Doreen’ s Story

Doreen Beddows - NHS Patient Experience (Written for her by husband Len)
www.scribd.com/doc/230217688/Doreen-s-Story

Part One Collapse and Hospitalisation Page 1

Part Two Elderholme Nursing Home Page 11
Part Three Evicted from Elderholme Page 13
Part Four Vale Court Nursing Home Page 21
Part Five The Next Twenty Years Page 22
Part Six The Covid Years 2020-2022 Page 26

In early morning of Saturday 19th June 1999 my wife Doreen collapsed. Her experience has been a microcosm of
the health services. She has had the best medical care anyone could receive anywhere in the world; over the years
she has been looked after by hundreds of different people at six locations who have given loving care. On the
other hand a small minority of administrative clinicians (NOT care and nursing staff for whom I have the
greatest respect) have shown complete indifference to her care and have then been protected by their health
service colleagues who should have made Doreen their first priority and not the defence of failed nursing
management. That failure ultimately lead to my wife being evicted from her home of eleven years.

Although I refer throughout to various legislation and NHS policies, I was not aware of all of these at the time,
although, obviously, the health service managers involved would have been - they just did not apply them. I was
also not aware of much that Elderholme Nursing Home themselves did and their reasons until the evidence started
to appear. It took them four years after the eviction before they put anything in writing. Their written statements
are shown in red within this article and I have included them as if they were made contemporaneously. Some of
the information is from NHS Reports only released much later after the events referred to. Fortunately that period
has passed and once again Doreen is in caring hands.

Nursing home experience is bound to be subjective and one person can receive the best service and
another the worst in the same location. Of the many nursing and care staff who have looked after
Doreen there has only been a handful that have shown no empathy to her situation. Most have
become firm friends and have really put themselves out to provide for Doreen’s needs. We are both
really grateful to them.

PART ONE - COLLAPSE AND HOSPITALISATION

Doreen has never really had a days illness in her life. She had high blood pressure and took tablets for it but it
didn't cause any real problems. She was very energetic, always on the go. She was a housewife with a large
house to look after - she was very house proud- and she also looked after our two grandchildren and our
niece's three children. She was forever running round after other family members. At 54 years old she still did
handstands against the lounge door. The previous week she was pushing our three year old grandson on the
swing in the garden and jumping up and holding on herself. I told her to act her age!

The following week she had back ache and I said that it served her right for going so mad with the kids. Her
friend later told me that when they were driving down to Birkenhead shops that morning Doe kept stopping
the car saying she felt sick .On the Friday evening she went to bed early because she was feeling unwell,
something she hardly ever did.We put it down to the back again.

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Four thirty am, Saturday 19th June 1999.Doreen wakes me up with the loudest screaming. She is clutching her
head and saying she has the worst pain ever. I ask her if I should give her paracetamol and she replies that it
shouldn’t be taken on an empty stomach! Never the less I try to give her a tablet but she involuntary spits it
out. She wants to be sick so I help her to the bathroom where she collapses to the floor, retching but unable to
vomit. I pull her back into the bedroom. She is throwing her legs at all angles and she says she thinks she is
having a stroke. I start to cry. Doreen’s last words to me are “Don’t get upset” then she lapsed into
unconsciousness. I could hear her tummy rumbling as if she was being sick but nothing was coming out. Her
teeth were jammed together. I tried to give her the kiss of life but I couldn't open her mouth .I now know that
I should have used her nose. I turned her on her side and called an ambulance.

In less than half an hour we were at Arrowe Park hospital a and e. I went to reception to check her in then
found my way to the serious injuries section. A nurse met me with a cup of tea in her hand. “I am afraid your
wife is critical and near the end. Her eyes are nearly closed with the internal pressure within her brain. Drink
this –I’ve put a lot of sugar in it”. “Can I see her?” I ask. She takes me to a side ward and explains that they
have placed her in an induced coma to alleviate her pain. She looks so relaxed. The nurse explains that they
are going to give her a brain scan just to confirm their prognosis but she says that even if she were to survive
she would be a vegetable. I agree that she would not wish that. The nurses are so considerate and their
calmness exudes confidence in their care. They take her off to the scanner and I went outside to the car park
and for half an hour continually prayed for her to recover but no one has given any hope that it is a possibility

Two years earlier I had been diagnosed with spontaneous DVTs, having had five blood clots, and was
placed on warfarin for life. Prior to her collapse, and unbeknown to me, Doe had confided to a friend that she
had been praying for her to be taken rather than me as she thought I would cope better. This happened to Doe
and I have had no dvts since. Godcedental?.......

Doreen is returned from the scan and the nurse tells me that their prognosis is confirmed. Doreen is placed in
Intensive Care to await the end. Our son and his wife arrive and we all sit round the bed in intensive care,
watching and waiting as nurses place tubes and monitors all around her and waiting for the end.

The telephone rings at the near by nurses station. A nurse asks will I speak to Walton Hospital. At a loss, I
listen as a surgeon introduces himself and explains that he had just called in the hospital to check his emails
and has seen Doreen’s scan, which is automatically forwarded to Walton for confirmation of brain injuries. “I
recognise the problem. I may be able to save her life. Do you want to let me try?” My earlier prayers are
answered. Yes, yes, yes. What other answer could be given. I pass the phone to the nurse and she starts
shouting instructions to get Doreen ready for an emergency ambulance through the Mersey Tunnel to the
Walton Centre. The staff start to extract all of the tubes and sensors which they had just finished setting up.
The duty surgeon comes in and tells the staff to put a move on. “I want this happening NOW!” I find out later
that there is a half hour delay because they are having difficulty checking her bloods. Doreen has a rare blood
group and since she was born had carried a card in her purse giving details in the case of an emergency. I had
forgotten all about it!

Relatives are not allowed in the ambulance so we decide that my son will go home to tell Doe’s mum and I
will collect my car and get across to Walton, hopefully ahead of the ambulance. Outside in the car park a
police escort awaits with an ambulance and I proceed ahead of it through the tunnel. The police have already
cleared one lane but I get through before the tunnel is closed.

Walton Neuro Hospital

I get to Walton Hospital having lost the ambulance. There is hardly anyone about. I wander from building to
building and eventually find someone who explains that I am at the old Walton Hospital – the neuro
department has moved to the new Walton Centre in Fazakerley, some miles away.

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When I eventually arrive and find out where to go a nurse tells me that the surgeon wants to see me. He
explains that they have already done an angiogram and the condition is more complicated than first thought.
Doreen has an arterio venous malformation (avm).

A brain avm is an abnormal connection between arteries and veins in the brain. It is believed that an avm
develops during foetal development but why it occurs in some and not others is not known. Whilst it is
congenital it is not necessarily hereditary.

The arteries taking blood to the veins in the brain normally pass through capillaries which slow down the flow
of blood. With an avm blood bypasses the capillaries and flows direct from arteries to veins. Blood rushes
quickly through the altered path because it is not slowed down by channels of smaller vessels. Surrounding
brain tissue cannot easily absorb oxygen from the fast flowing blood, causing damage to brain tissue resulting
in stroke like symptoms. Over time the body produces more arteries to supply blood to the fast flowing avm.
As a result the avm enlarges putting more and more pressure on the brain and extreme pressure on the walls of
the affected arteries and veins, which may rupture resulting in bleeding into the brain.

An avm is most critical between the ages of ten and forty. By middle age it is generally starting to reduce.
Doreen was fifty four – the critical period should have passed. A brain avm may not show any signs but on
looking back Doe always felt nauseas, suffered with high blood pressure, headaches and terrible pains across
her shoulders. I remember going with her to the doctors some time back because he did not seem to be getting
to the bottom of her ailments. He said “What do you expect – you’ re forty now. You are going to get aches
and pains.” I just thank God that Doe was not aware of the real problem and that it was not fatal earlier in her
life.

The surgeon explained that he would have to take out three large arterial roots from the brain so the chances
of success were very slim but without the operation she would certainly die in the next few hours. I obviously
gave permission and wished him good luck.

A nurse introduced herself. She said she was Doreen’s appointed one to one nurse whilst she would be in
intensive care and would be available to help with anything what so ever, both for Doreen and myself. I must
have looked a mess because she gave me everything to shave and shower with. It was eleven o’clock. The
nurse said that miracles happen at Walton. She said, believe me or not but this is true. A patient was riddled
with cancer. The priest came to give the last rites. The next morning the cancer had disappeared. There was no
explanation. Later that morning the church telephoned to say that the priest had died during the night.

Some of our close friends arrived to give their support. At six thirty the surgeon looked into the waiting room.
“The operation was a success, her life is saved for the moment. They are just putting her back together again.”
The relief was indescribable, but it was another three hours before the anaesthetist came into the room. “I
believe it was a success” I said. He looked perplexed.” I’m afraid not…the surgeon meant that he successfully
removed the pathology which was the size of an orange and more complicated than we thought so we are not
sure about the after effects.” Doreen was returned to the intensive care ward. I was surprised to see that she
had no bandages on. Her hair was shaved on one side of her head and a panel in her skull, about four inches
square, was kept in place with raised staples. She looked beautiful….just like a punk rocker! The doctor
explained that they may have to do a further operation tomorrow and until then she would be kept in an
induced coma. I sat with Doe until midnight then returned home.

On Sunday I went to Walton at visiting time but was told that there had been a flood of blood in the brain
cavity and she was in theatre again. This time it was five hours before she was back in the HTU. They had
placed a probe in her brain connected to a machine which measured the pressure within the brain. The
monitor read 19/20 and the nurse explained that it should read 15 but if it crept up to 25 another urgent

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operation would be needed. I sat watching the monitor. It was slowly increasing by the hour – 16 then 17 now
18.It dropped back to 17 then shot up to 19. By eleven thirty it was 24 then it fell to 23 and hovered between
the two for some time. It appeared to have stabilised at 24. In the early hours I went home and the night
nurse promised to call me if there was any further deterioration.

Monday visiting and the internal pressure had fallen to 20 so the immediate emergency was over. Doreen was
placed on a ventilator to help her breathing. She does not move at all. A monitor shows when the ventilator
takes over her breathing. Just when you think she is managing on her own the ventilator kicks in and hopes
are dashed again.

On Tuesday the doctors have decided to bring Doreen round from the induced coma. She starts to move
slowly as the drugs start to wear off. Then her movements become more definite. As they do her shoulders
start to shrug, faster and faster. She is pulling her left arm up towards her face which is not a good sign. She
pushes her right arm outwards – that is good. Her legs move slightly when prodded with a pen. She starts to
panic over her breathing. We watch her willing her to open her eyes. The nurses decide that it is too early to
stop the sedation and they induce the coma once again.

Even in the worst situations there is some humour. Whilst I was in the kitchen area two girls, six or seven,
asked me “Is that your wife in the HTU” I nodded. One said “Don’t worry…my granddad has been in there
since November and now he can breathe on his own!” Her granddad was in the next bed. He had a frame at
the bottom of the bed with two boards on it. One said LIKES and the other DISLIKES. On the likes board was
a picture of Manchester United. I pinned an Everton programme over the MAN U and he tried to shout
something but couldn’t say more than “a-a-a-r-r-r-g-g-g-h-h”

Wednesday and Doe is still in an induced coma. They do a tracheotomy to help with her breathing. Thursday
and every now and again Doreen is breathing on her own. At ten in the evening they turn the respirator off
and leave Doreen to breathe on her own through the trachea. A consultant anaesthetist tells us gently that there
is little hope of Doreen recovering enough to know who she is or undertake rehabilitation. She says that
Doreen will never be going home again. No one can be sure if she hears what is being said and cannot signal
– locked in – or whether she has lost all capacity. There is always hope.

By Friday Doreen has been breathing on her own for twenty four hours and sedation has been stopped. She
has no movement but reacts to pain. On Saturday she is moved from the HTU to another ward. She has
oxygen through the trachea. She has still to open her eyes. I feel that if she opens her eyes everything will be
ok. I ask the nurse if she will observe Doreen at midday on Sunday.

On Sunday at midday many of our friends pray at their different churches for Doe to open her eyes. When I
visit her at three I ask the nurse if she looked at Doe at midday. She says she was too busy. At six the nurse
attends to Doreen, then as she pulls the curtains back she says “Oh by the way….she has opened one eye.”
Prayers answered again!

There is little change over the next three days then on the Wednesday Doe caught a chest infection and is
treated with antibiotics.

Thursday none of the nurses will tell me anything. They say I must speak to the surgeon. I make an
appointment to see him Friday at midday. He is too busy to see me Friday. On Saturday the sister told me that
the avm was too complicated to operate on and it had been decided to move Doe back to Arrowe Park because
no more could be done for her. I said that the surgeon had told me that he had removed the avm. She went
away and eventually returned to say that there was a breakdown in communication somewhere and she had

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the wrong information. On Sunday another nurse told me that they had done a scan and Doreen had an
inoperable blood clot. I asked to see the surgeon.

On Monday the surgeon and his registrar came to Doreen’s bedside and explained that the original operation
was successful. Nothing had been left behind. There was no further blood clot. The files had been mixed up!
The scan was better than he had anticipated but he was disappointed that she was not coming round. He
thought that the hemispheres of the brain were in reasonable condition and doubted if there was mental
damage. He thought that she may well hear but be locked inside herself, paralysed. She was in no immediate
danger of not surviving but he couldn’t tell how long she would survive. Her problem was going to be
infections. We must keep trying to stimulate her brain. Meanwhile she would be transferred to Arrowe Park
where they could treat her infections. The surgeon explains that it was a difficult decision to operate knowing
the probable outcome but every time a procedure is carried out a little more is learnt.

Over the next few days Doe seems to move her pupils ever so slightly but mainly stares from the corner of her
eyes. She closes her eyes and sleeps during the night. She has a sleep awake pattern rather than sleeping all of
the time - this shows that she is not in a coma but the next best stage.

Arrowe Park hospital

Three weeks after her operation Doe is transferred from the

Walton Centre to Arrowe Park general hospital. Initially she
appeared to be distressed by the move but settled in
once she realised that she was safe. She had fits of coughing
and a lot of eye movement. The physios attempted to exercise
her. She was strapped to a board which was then pulled
upright so that she hung from it like a rag doll, her head down
on her chest. You could see her arm muscles tightening as she
tried to lift them but only succeeded in a slight movement.
Back on the bed she tried to lift her head off the pillow and
pressed my hand when I asked her. Nurses decide that
there was a definite response when they asked her questions and they placed a notice above her bed stating
that she blinked once for yes and twice for no. I asked her was our front door red (it was black) and she
blinked twice. At that time I had no doubt that Doe understood what was happening and was trying her best to
communicate.

The physios did a lot of exercises with Doe and tried to ascertain which of her movements were intended and
which were reflex action. Her breathing became strained and she required oxygen. Her chest started to fill
with fluid and her lungs had to be suctioned. Before long she had a full blown chest infection and it was
touch and go for up to a week.

The Doctor on his rounds explained that as this was going to be a long term job, maybe the hospital was not
the ideal place and we should consider a nursing home or home care. I said that I would definitely want to
have her at home. He said that he would arrange for staff to train me on how to care for her. Meanwhile he
would not be seeing her every day so if I wanted to know anything I was welcome to take her file from the
ward filing cabinet and read up any comments. The ward manager said that I was free to visit anytime of the
day or night and that I would be fully involved in any decisions

I did everything from changing her, bed baths, even washing her hair and doing passive physio on her arms
and legs. I could ask her up to five questions and was happy that she was responding. I was shown how to

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insert a feeding tube up through her nose and down her throat (an NG tube). A nurse showed me how to suck
up a little liquid from the stomach through the tube and test it with litmus paper. If it turned red the tube was
in the acidic stomach juices. Feeding could start using a pump.

I was very tentative to start with and very slow. One evening the nurse said “ give it to me I’m in a hurry
tonight”. She changed the tube and went to connect it to the feeding bottle. I asked her (with my new found
medical knowledge!) if she was going to verify that the tube was placed in the stomach by testing with litmus.
She said she did not need to as she knew where she had placed the tube. I should have insisted but I was new
to this and did not have the confidence to insist. That evening after I left it appears that the tube had NOT
been placed in her stomach but in her lungs and the feed started going into her lungs causing congestion. It
was not until she was coughing her heart out that the nursing staff noticed. The following day I was met with
a shamefaced sister who told me that the NG tube had been filling Doe’s lungs with feed all night. She
became seriously ill with a high temperature and asphyxia pneumonia. I thought that she was going to die.

Doe recovered from the pneumonia but was ill again. One infection after another followed. They moved Doe
to a side ward on her own and explained that she had MRSA. No one told me what that entailed except that
visitors had to scrub up and wear aprons. I went on the internet and found out what we all know now. MRSA
is a hospital acquired infection. It is a bug that circulates in hospitals and is resistant to antibiotics, which
were having little impact on the MRSA but after two weeks Doe began to respond.

The physios increased their visits and it seemed that Doe would recover yet again. However when I asked her
questions now her blink responses were no longer specific. Her infection appeared to have destroyed what
little interaction she had. She is now biting her lips and grinding her teeth to such an extent that she has bitten
off small parts of her lower lip. She has a nebuliser through her trachea and occasional oxygen input.

I was asked to attend a meeting at one the following day to discuss Doe’s situation. The room was full –
maybe twelve people all with files and notes. I did not follow their conversation or understand what they were
discussing and before I knew it they all rose and left the room. The ward manager asked whether I had
understood what had been agreed and I had to confess that I didn’t. She said that we had just had a
multidisciplinary meeting and agreed to change Doe’s feeding regime from an NG tube to a PEG tube
(Percutaneous Endoscopic Gastrostomy tube ).This is a tube fitted through the chest wall into the stomach. It
is then connected through a pump to the bottle of feed. Apparently I had agreed to this. The operation was
carried out the following morning.

I visited the ward every day and sat with Doe from nine in the morning to nine at night. I helped with her
care and felt confident of being able to take her home. One morning when I arrived a gentleman was sitting
next to Doreen’s bed filling in forms. Apparently he was a doctor from the neuro rehabilitation unit and had
come to assess Doe. The nurse’s notice was above the bed suggesting Doe’s blinking responses and the
Doctor was encouraged by that. He said that there may well be a place for Doe at the rehab centre at
Clatterbridge in six to eight weeks if she could be stabilised by then. I asked the ward manager why she had
not told me that someone was coming to assess Doe and she said that she had not told me because she
considered it to be a formality, and that Doe would be rejected as beyond help. She did not want me to be
upset so had not told me. I have since learnt that the doctor who did the assessment was a locum as the
rehabilitation doctor was on leave. The decision to offer a place may well have been different but the locum
wanted to give her the best opportunity.

Doe’s breathing was causing some concern. An anaesthetist called in and said that he was going to insert a
different tracheotomy. He was quite rude and abrupt and did not prepare Doe in anyway but just extracted the
present one leaving the gaping hole pumping out fresh blood. He tried to insert another one but it was too

6
large and he had to go away and find a smaller one. This fitted thank goodness. Doe was really upset,
appearing to be in tears and frightened.

Neuro Rehabilitation Centre

Eventually a place was offered to us for a three week assessment at a specialist neuro rehabilitation unit in
Clatterbridge hospital. Doreen was moved there in September, three months after her operation. When we
arrived they immediately put Doe to bed and asked me to leave. I told them that I was fully involved in Doe’s
care and I explained in medical terms what Doe had suffered from. The nurse asked if I was a doctor and I
said no, I was just repeating the notes from her file. They reluctantly allowed me to help. This objection to
my involvement continued until all staff became aware that I did know how to help constructively and I was
not just being difficult.

Nothing happened in the first week. In the second week they got her up in to a chair and then tried to stand her
up. She just collapsed like a rag doll. They laid Doe on a board, fastening her hands and feet with straps. The
board was then tilted until upright. Doe’e head fell forward and once again she just hung there unable to make
any positive movement. During the third week nothing was done for her and then in the fourth week I had a
meeting with the consultant doctor, the physiotherapist and the OT. The doctor, whom I had not yet met,
opened the conversation by saying that they had completed their assessment and said "Your wife is in a
continuing vegetative state . There is nothing we can do for her. We shall stop the physio and just give her
passive attention." Talk about no bedside manner.....I don't think that he even knew where the bed was!

The routine at the rehabilitation unit was different from the previous three months spent in a hospital
environment where I was free to visit from nine in the morning until nine at night. Weekday visiting was now
from five pm only as the other residents received physio during the daytime. When I arrived each evening
just after five, most of the residents would be having their evening meal and sometimes I would find Doe in
her chair facing the wall next to the TV, as if she had just been pushed out of the way. She nearly always
looked distressed, partly because she wore a neck brace which seemed to squash into her face. I would take it
off as soon as I arrived and she appeared to calm down.

They got Doe up in the morning then put her back to bed at twelve, getting her up again at five until nine pm
or so. I would help to put her back to bed at nine and one evening I retrieved the hoist and took it to the room

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in readiness to transfer Doe. A male nurse came in and went to take the hoist for another patient. I hung on to
it saying it was Doe’s turn. He pulled it away from me and I pulled it back. We had a tug of war until he
agreed to help me put Doe back to bed first.

One evening Doe was vomiting and I was finding it hard to keep her upright and clear her mouth so I rang the
emergency bell. No one came. On my way out I looked in to the nurses station and told them. The nurse said
“oh, we heard the bell but as it was Doreen’s room and as she can’t press the bell we presumed it was a
fault”!

This could be a typical response to Doe’s condition. Some people make an immediate judgement that she does
not know what is happening and can therefore be ignored. She had a cyst on her lower back and I went with
her to the Hospital to see a consultant. He took out a scalpel and was about to cut into the cyst. I asked him
why he had not given Doe a local aenesetic first. He said “they don’t feel pain”! I replied that Doreen DID
feel pain and he said “well I’ll give her a local if you want”. This just illustrates how difficult it can be to
convince those involved to treat all patients with understanding and not make general conclusions that affect
care. It also demonstrates why I needed to be so closely involved in her care.

Doe was not able to retain a normal catheter so it was decided to insert a supra pubic catheter. This was done
under general anaesthetic and a tube inserted through the tummy and into the bladder. The tube floats on the
bladder taking away excess urine, out of the body via the tube which is connected to the usual bag. The
surgeon who performed the operation then showed me how to change the tube by extracting it from the body
and carefully inserting the replacement. This caused considerable discomfort for Doe and quite a bit of trauma
(in other words – blood!) because the skin starts to grow round the tube and it has to be changed every few
weeks.

I had become used to reading through Doe’s medical file whenever I wanted whilst she was in the hospital.
Here in the rehab unit, I expected the same freedom but the Doctor refused to let me see it. I had to make an
application to the health authority and wait whilst they made lengthy enquiries. After a month or so I was
given permission to read the file. On the first page, written on the day that we arrived at the unit, someone had
written in large letters across the page DNR. I asked what it meant and the doctor explained that my wife was
not to be resuscitated should she suffer a relapse. I was horrified. I said do you mean to say that if she
collapsed again you would do nothing to help her. The doctor replied that it would not be beneficial to
resuscitate her. I asked why then had they bothered to operate on her when she was so near death at the
beginning. After all that trauma, to say nothing of the cost, why should they give up now? He agreed to amend
the file by removing the DNR .

When I arrived one evening the consultant told me that Doe had contracted pseudomonas and maybe it would
be better to stop her feeding and let her go. If I had not seen the file and had the DNR removed I doubt that I
would have even been consulted. I had never even heard of such an infection, let alone decide to end it all.
Apparently it is a fluorescent bug that eats MRSA for breakfast ! These hospital acquired infections are
proving almost as dangerous as the original complaint. He said that this bug was almost totally resistant to
antibiotics so the treatment they would have to follow had violent side effects which could permanently
damage the heart, liver and kidneys. I said that I did not understand how they could consider ending her life
when she had only been in rehab a short while and had only had three hours exercises at the most during that
time. I commented on how the trachea was not being handled with sterile attention which would not help
infection and there were dirty cloths left in the sink and used pads left in a bag in the room. I said that the
exercise routine which he had introduced was not been carried out. I said that Doreen was responsive but no
one reacted to it. He asked me to accompany him to Doe’s room and asked me to speak to her so that he could
see the reaction. Doe was just having suction so she was upset and her response was not convincing. The
consultant agreed to post a large notice on the room wall giving full details of the programme of stimulation

8
which would be continued. He said that they would take out the tracheotomy tube and see if Doe could cope
with her oxygen levels. In the end the meeting went from ceasing all treatment for Doe and letting her go to
following a more intense course of treatment! It would appear that instructions made by the consultant were
not always followed by the nursing staff if they considered them futile. When I returned later the trachea tube
had not been removed as planned because the nurses did not want any complications over the coming
weekend!

After trying several different antibiotics the pseudomonas was controlled and Doe gradually recovered. Over
the next twelve months there would be a pattern of one infection after another interspersed with bouts of
vomiting and struggling to breathe. Doe would panic but as time wore on she became more adjusted to what
was happening and her anxiety decreased. When the tracheotomy tube was removed, the infections decreased
and emergency measures became less necessary.

During this time I continued to visit Doreen every evening and weekend afternoons. I went in one evening and
the nurse met me at the door and told me that Doe had an accident during the previous night. I asked why no
one had telephoned me and she said that they wanted the duty doctor to examine her first. I went in to see
Doe. She had a very large black eye with bruising all around it. Apparently she had been found with her head
on the metal side rail and must have slipped off the pillows on to the rail. Imagine her knowing she was
moving towards the rail and being unable to stop herself. I considered that the pillows had been too high and
that had been the cause. The doctor said that she had a fit and that had been the cause.

I continued to receive training in attending to Doe’s needs with a view to taking her home. The physios
showed me how to insert a suction tube through Doe’s tracheotomy and down into her lungs then connect it to
a pump and clear the mucus. The matron showed me how to judge the insertion by “feeling” through the tube
and just stopping before the floor of the lung was reached. With great care you could reduce the discomfort.
As the tube went in Doe would retch but somehow I was able to overlook that and continue with the tube until
her chest was clear.

Not long before Doe was ill, I had taken her to a and e because she had sliced her finger when cutting a
cauliflower. The doctor opened the wound to clean it and I went to faint. He left Doe and took me outside for
fresh air. As the patient, Doe was not too happy with the attention given to me instead of her! The
tracheotomy, which had not been removed earlier as promised, was becoming problematic and needed re
inserting quite often. One day the tube came out when Doe coughed. The hole was gaping open pumping out
blood and I had to keep the site open with a pair of scissor like instruments and reinsert the tube. I would
never have guessed that I could perform such procedures. The days of fainting over the sight of blood had
long gone!

Where to next?

After twelve months in rehab Doreen had stabilised to a fair extent but still needed care 24/7. It was realised
that there was no more that the hospital could do and that rehabilitation was unlikely to make much
difference to the prognosis. The plan was for Doreen to come home with a care package. I was totally
involved in Doe’s care and trained in every aspect of looking after her so that she could return home. She
would, of course, require close attention from District Nurses and NHS carers. Nurses and social workers
visited our house and agreed that it was large enough to accommodate Doe and all of the necessary
equipment. The Hospital tried to arrange such care but Community Nursing would not guarantee that they
would always be available when needed as they were too busy to guarantee arrival times and Doe need
turning and medication every four hours. The doctors then decided that the amount of care needed could not
be arranged by home visits of the local home care team. The consultant would not authorise care at home
because of the safety aspect arising from her unpredictable needs. She would have to go in to a nursing home

9
and I would have to pay the fees myself. I said that if I could not take my wife home then I was not going to
pay for her to be nursed elsewhere. Social Services and NHS argued back and forth as to who was
responsible. Eventually I found out by my own research about continuing health care.

When all of this started I was not aware of the structure of the health service. I thought the NHS was run by
the Government and whatever instructions they issued had to be followed by the entire NHS. Nothing could
be further from the truth. Apparently when the NHS was formed in 1948 each area had its own health
authority and they were never legally combined into one organisation. The Government can advise the
various areas as to how they should proceed, but they cannot compel them to. There was a court case known
as the Coughlin decision which basically decided that the NHS had a duty to provide continuing patient care
under certain criteria. Health and Local Authorities had a legal duty to work together to arrange such care so
that patients do not fall between gaps in service. No treatment should be refused because of uncertainty about
funding. The NHS sent out a circular to all areas setting out guidance on how this legal requirement should be
applied. Apparently the NHS will fully fund patients who meet certain criteria which illustrates that their
primary reason for going into care is a matter of health. Obviously Doreen was such a case.

No one told me anything about funding and I only found out about continuing health care from the internet. I
telephoned the local NHS Wirral Health Authority and asked them to send me the funding criteria brochure. I
received their four page leaflet. After reading it I telephoned to make further enquiries and asked for the CHC
department. The person at the other end asked if I was Mr. Beddows. Alarm bells rang – how would they
know it was me? (this was before digital phones).Eventually a gentleman came on the telephone and said that
“we don’t do continuing health care funding.” Their four page leaflet had said that they would only fund
patients who needed to see their consultant every week and if this was not necessary then they were not ill
enough for funding. Whilst there were 1700 such patients in neighbouring West Cheshire Health Authority,
there were none in Wirral. I asked West Cheshire for their criteria and it was over sixty pages long and was a
copy of the official NHS handbook. It stated that anyone in a continuing vegetative state such as Doreen was
to be funded. Wirral had modified theirs to exclude most of the official criteria including vegetative state.
When I went back to Wirral NHS with this observation they said that they were not funding her as Social
Services were responsible. They appointed a social worker for Doreen but then said that she was a health care
patient and the NHS should fund her. Apparently the NHS and Social Services have monthly meetings where
they discuss such cases and for twelve months Doreen’s funding was passed from one to the other without
resolving the disagreement. Meanwhile I refused to take Doreen out of hospital until they either agreed on
funding or allowed me to take her home. Wirral Health were ignoring the legal decision of the Court and
guidance from the NHS.

I went to see our MP but after some useless initial enquiries he wrote to say that he could not help as he was a
member of the Wirral Health Hospital Board! The consultant said that he could not help with prognosis to
assist my claim, because it would be going against his employers.

I made telephone enquiries to the Health Information Service who put me on to the Health Services
Ombudsman. They referred me to Merseyside and Cheshire Health. They suggested that I speak to the
National Health Executive in Leeds .I also spoke with the NHS Public Enquiry Office, the NHS Funding
Office, and the NHS Joint Health and Community Unit. All were aware of the Coughlin case but none had the
authority to compel Wirral Health to apply their legal responsibilities.

Doreen was to be fitted for a special wheelchair and I attended the wheelchair centre at St Catherine’s
hospital. Whilst we were waiting to be seen I got chatting to the cleaner and I told her about our funding
problem. She pointed to a building over the way and said that is where the chief executive has his office. She
said that she spoke to him every morning when he was parking his car. She offered to telephone him and see
what was going on! When she did so he could not come to the ‘phone. At least she had tried. Following her

10
lead I wrote to him and asked him, as chief executive of Wirral Health, to make a decision on my wife’s
funding. I received a letter on Monday morning to say that he would visit my wife at one that same afternoon,
giving me little opportunity to prepare. I met him at the rehab unit front door and he remarked that he had
never been in this unit – “back of beyond isn’t it?” Just then the unit manager came out of his office and asked
who it was that I was talking to. I told him and he said “That’s my boss. Do you mind if I join you?” Neither
of them knew each other. We went in to see Doreen.

Doreen had her badly injured eye after banging her head on the bed rail, her feed was running through the
pump into her chest and she looked in a sorry state. I asked the chief executive to look at my wife and say
that he honestly thought that she was not ill enough to warrant funding. He replied that he wasn’t a doctor!
The following monthly meeting kicked the matter into touch again.

Doe has splints on her arms and legs and a brace on her neck. She has a problem with too much saliva, and
is receiving passive physio two or three times per week. There is no consistent response from her and she is
often agitated. She bites her lower lip continually. We are stuck in limbo with no one able to make a decision
as to where we go from here.

Finally I spoke to someone in NHS Complaints office in Leeds. She said off the record that the only way to
get anywhere was to sue the NHS and to check my house insurance because it may well include legal costs. I
did as she suggested and sure enough there was some cover available. They advised that I would have to
apply to the Court for a judicial review of Wirral Health’s decision not to provide funding. They advised
making a negligence claim against the NHS but I did not want to do that at this time because I did not feel
that it was right to blame the NHS. That was before I had twenty years of dealing with their administration !

Even though vegetative state was a listed qualifying item in the NHS continuing care criteria – Wirral had
deleted it from their very slim version of criteria. In the words of Wirral NHS’s chief executive - "we don't do
continuing care on Wirral". After many telephone calls I eventually found a solicitor who was prepared to
take the NHS to court because they were not following their own policies and, based on the Coughlin case,
they had a legal responsibility to provide continuing care. They were so sure that case law would provide a
positive outcome that they had found a QC who was willing to act free of charge. I passed this information
onto the Health Authority along with the threat of involving the newspapers. It had taken twelve months and
the threat of a QC who was prepared to act pro bono, before Wirral NHS agreed to reconsider funding
Doreen’s continuing care. Within a week I had received a letter confirming that the local hospital would pay
for my wife’s care from their budget for the neuro centre. Even then they were not committing themselves to
calling it Continuing health care funding! Doe was one of the first, if not the first, patient to be funded on
Wirral. How many people were being nursed at home with no help from the powers that be?

During these elongated discussions I used to take Doe for a walk pushing her chair around the Clatterbridge
hospital grounds. In a far corner was Elderholme Nursing Home which, although an independent charity, is on
the Hospital site. I would stop there and often one of the nurses would come out and speak with me. She said
that they would keep Doe on their waiting list. They even sent staff over to the rehab unit to learn about Doe’s
needs and agree the care required. As soon as the NHS agreed funding in writing I packed all of Doreen’s
things into two plastic bags, put them on her knees on the wheelchair, and pushed the chair across the hospital
grounds to the nursing home. It was October 2000 , sixteen months after the initial operation.

PART TWO - Elderholme Nursing Home

The staff were welcoming but that first evening was horrific. Doe’s room faced a brick wall three feet from the
window. The room seemed dark and unwelcoming. The pillows on the bed were more like cushions, very small.
Near the sink were torn up towels to use as facecloths. When it came to bed time we faced a problem. The hoist

11
sling which had been used to place Doe in her chair belonged to the hospital and had been removed from
underneath her before we left. Now days I would know how to manage to place another sling behind her back
and manoeuvre it under her bottom. For some reason no one thought about trying that. Instead we attempted to
physically lift her from the chair onto the bed. Four of us eventually achieved our objective but at a lot of
distress both to Doe and to ourselves! It was explained that most people were allocated the room we were in
when they first arrive until a more pleasant one becomes vacant. Within days the matron showed me another
much brighter room overlooking the central garden She asked me whether that was suitable and when I
confirmed that it was she said that she would get it redecorated, ready to move in shortly.

The matron asked me if I would mind changing Doe’s GP from Bebington Practice to the nearer one at
Willaston as they had crossed swords with the GPs there and Willaston visited a lot quicker. I agreed as neither
one was mine anyway.

We carried on going to the church chapel on Sunday mornings and I would often do the reading or give a small
talk. Most afternoons I would wheel Doe around the hospital grounds. Sometimes we would go along the
footpath across the fields to Thornton Hough or Brimstage.

At the beginning one or two staff did not like my involvement in Doe’s care. I was told that my presence
stopped them from stimulating Doe with conversation .I agreed to give it a try. However I went in the room the
following day when they were attending to Doe and they had the radio blaring and were laughing and joking
with each other – not with Doe. There can only be one form of stipulation at a time for Doe to be able to
participate so to be talking over the radio would only confuse her. There were no further problems with my
involvement after that.

Elderholme had a superb reputation with excellent nursing and care staff. I helped with all of my wife’s care
and therefore worked closely with most of the staff. I received a lot of help and advice from Elderholme’s
experienced staff, with several SENs and a hands on matron. Care was excellent and the Home provided a
happy atmosphere between everyone involved for many years. I acted as secretary for the relatives group
between 2001 and 2005 and then was vice chair of another residents and relatives group from 2006 to
2009.During this time I helped organise dances, darts competitions, car boot sales and other activities involving
residents, relatives and staff. Together we raised over £20k. I was happy with Doreen’s care and did not want
her to be moved from her home of eleven years. However the circumstances described in Part Three explain
how she came to be evicted.

The eviction was caused by complaints which I made about the integrity of Elderholme management. At various
times they….

12
1) attempted to restrict my involvement in my wife’s care by telling my wife’s GP that I had instructed staff that
they could not contact him without my permission. This was totally untrue.
2) after I had said that my wife was not receiving sufficient fluids they obtained an unnecessary reduction in my
wife’s fluid input by telling the dietician that she was passing too much urine when they knew this to be untrue.
3) informed my wife’s GP that they had received complaints from NHS clinicians that I was interfering in my
wife’s care when no such complaints had been made
4) asked the Continence Service to remove my wife’s catheter which was against the advice of the urological
consultant and when they refused informed my wife’s GP that I had stopped them from removing it, which was
totally untrue.
5) informed Wirral Social Services Safeguarding that I had made a comment about a shotgun saying that I would
kill myself and my wife which was untrue and that I had left a telephone under my wife’s back, which had
marked her, in order to trick them which was untrue
6) sent “copies” of a letter to my wife’s MP and GP, Wirral Social Services, Safeguarding, CQC, the NMC, the
NHS and Merseyside Police purporting to be a copy of one sent to me which was a forgery
(Forgery Definition: The making of a false document knowing it to be false with intent that it should be used or acted on as genuine to the prejudice of
another.)
7) acted in an aggressive manner towards me witnessed by my wife’s GP

The full details of these complaints can be seen at www.scribd.com/doc/343771600/Statements-Comparisons-2017

The organisations who are supposed to protect the interests of patients who cannot speak for themselves, all
failed to follow their own policies and did not meet expected standards of care. The level of care in a nursing
home is highly dependent on the matron in charge. Just because a person is an excellent nurse, it does not
necessarily mean that they will be a good manager. Doreen has been nursed in care homes under the management
of seven different matrons, and only one of them was classed by CQC inspectors as “requiring improvement”.

PART THREE - EVICTED FROM ELDERHOLME

Elderholme has always had a shortage of care staff because of a mistaken belief that NHS guidelines were
exceeded. However they neglected to take in to account the specific needs of particular residents when
calculating the staff numbers. They have always been penny pinching. I brought in my own pillows because
they were short. There was a constant shortage of prescribed items - I used to wander the main hospital trying
to beg catheter night bags! On one occasion there was no tape available to secure a dressing so cellotape was
used! Everyone accepted this and staff shortages because the Home is a charity and was, as we thought, short of
money. The Staff worked extra hours and put themselves out because they considered that they were valued by
the residents, who they put first. Staff seldom left. Problems started when an extension was built for Social
Services’ use but without a written contract. The extension was built with the intention that Social Services
were going to staff the new unit. Once it was built and this fell through the directors refused to take on
additional staff until the new unit was full. Staff became stretched to the limit and care schedules fell by the
wayside. The Matron handled all of the doctor’s visits and was very hands on. When a relative came to visit she
could tell you immediately what the latest was on the patient. Often she would be the only RGN on duty. She
continually asked for an assistant matron but the Directors procrastinated. Communication between the
directors and the Matron became almost non existent. The directors pleaded poverty but it later became
apparent that in fact the home had over £400,000 in the bank and had never lost money since it opened.

When the CSCI (later the CQC) report said that the home's medicines records were inadequate and care plans
needed improving the Directors finally agreed to an assistant to the matron. An applicant for the assistant role
offered the world but insisted on being made matron. The directors, with their usual complete lack of loyalty,
accepted this demand, despite the fact that the residents and staff were very happy with the way the existing
matron dealt with them and her only failings were due to the Trustees refusing to provide assistance for her. She

13
was demoted and replaced with the new applicant in 2006. The Home was then in turmoil for nearly two years.
According to their accounts the number of staff at Elderholme was 36. Two years later under the new manager
the staff was 84. If the former matron had been given the same number of staff then there would not have been
problems with the paperwork.

The new matron was given a free hand to alter what ever she wanted and she set about changing almost every
thing in the home. There may have been a problem with paperwork but there was no problem with care before
she came but she upset so many people that they left. Turnover in two years was over 80 people – some only
stayed two or three weeks. Originally there were seven SENs who were the back bone of the care system and
had the respect of the staff. All but one of these left having been told that
“ CSCI said SENs were not allowed any more!” Anyone who showed any superior knowledge was presented as
not supporting the new matron and encouraged to leave. Matron brought in her own new staff but these were
mainly inexperienced or newly qualified. The extent of nursing knowledge decreased and the respect between
nursing and care staff deteriorated. The former matron continued as an RGN and I never heard her say anything
disparaging about the new management but the new matron told the directors that she was undermining her so
they asked her to leave. The new matron stayed in her office as she wanted to be a "Manager" not a hands on
nurse. She hardly went on the floor. Her assistant also concentrated on office work. There was, therefore, no
hands on management. Carers managed their own work load and the nurses to whom they reported lacked the
experience to manage the team. Experienced care workers left in droves because the matron would not allow
discussion of her orders and many carers had been employed with no experience placing a greater workload on
the older ones.

There was a continuing shortage of staff available to help due to organisation rather than overall numbers.
Because of the problems and complaints and the matrons attitude, staff felt constantly under pressure which is
why there was such a high staff turnover. The Matron held a relatives meeting in October '06 in which the she
was so besieged with complaints that she vowed never to have another meeting again - and she never did.

Elderholme is a charity. The Trustees asked relatives to form a properly constituted residents and relatives
group.We formed FARE (Friends and Relatives of Elderholme) and a Mr. Liversedge was elected chairman
and I was elected vice chairman. The Board accepted our committee and we met with the Trustees, Matron and
General Manager on many occasions. FARE only presented generalised observations based on points raised by
the 36 members and mainly concerned lack of prescribed items, cleanliness, staff shortages and staff unrest. The
Board insisted that specific complaints could only be made by the individual concerned. However whenever a
relative made such a complaint Matron would refer it to staff with comments like "Another FARE moan to deal
with!" when in fact it had not come from FARE but from an individual.

Mr Liversage and myself, representing FARE and Elderholme’s Directors attended a meeting with the area
manager at CSCI, who told the Directors that they were not dealing with complaints in a satisfactory manner or
managing the Home for the benefit of the residents. CSCI upheld the main relatives’ generalised complaints
during their inspections. Elderholme’s chairman promised that he would personally over see all complaints
through to a conclusion. To give the Matron her due she would always give a written extensive reply to
complaints but did not seem to be able to put her remedies in to practice. In August 2008 the Matron left at
short notice. When they had bad CSCI reports about medicines the Board blamed the first matron but she had
been managing the home with only 36 staff and the Board would not authorise an assistant! When the next
Matron left she was blamed for the high staff turnover and the large number of complaints. It appeared that
everyone was at fault except the Directors.

In 2008 another new Matron was employed. Her aim was to reduce staff turnover and stop complaints. The
matron’s first step was to disband the relative’s group FARE from whom, she was informed, the majority of
complaints arose. She issued notice to evict the FARE chairman’s mother, a resident in her nineties, because,

14
they claimed, her son was “upsetting staff”. I went to see the Matron and the General Manager to intercede on
Mrs Liversage’s behalf. They would not change their mind.When Safeguarding prevented the eviction due to
her advanced age, Mr. Liversedge had his visitation rights restricted by the Home. I offered to disband the
relative’s group if the Home would lift the restrictions on Mr Liversage. The matron agreed that she would so
we closed down FARE and distributed the remaining funds by way of gifts to the residents. After we had done
that, the matron changed her mind and refused to lift Mr Livesage’ restrictions.

Having failed to remove the chair of the relative’s group from the Home, the new matron turned her attention to
myself as vice chair. The matron resented my close involvement in my wife’s care and my position in FARE.
She told me that she had never worked in a care home where relatives spent so much time in it. As she had failed
to remove Mr Liversage through Safeguarding’s intervention, she decided to change tack and ask my wife’s GP
to restrict the time that I spent with my wife. The GP explains that in order to persuade him to come to a meeting
the matron told him: GP: “HW informed me that Mr Beddows had instructed her that his permission was
required before they could contact me” Matron: “ I never made the statement to GP that Mr Beddows’ permission
was required before staff could contact the GP”. Both myself and the GP confirm that she did so and repeated the
claim at the meeting on 12th May 2009. It was the reason that the GP agreed to a meeting.

When he arrived at the Home the matron and certain nurses met with him. The nurses left and I was called in.
The GP and the matron repeated to me what had been discussed. I had always attended appointments with my
wife’s consultants and specialists and I would report back to the Home and agree with them the way forward.
This had always worked but the new matron considered that her judgement over ruled that of the NHS
clinicians. The Urology Consultant reviewed the catheter and said that it should be retained. The matron
disagreed with his decision and asked the Continence Service to remove the catheter. They had refused so the
matron told my wife’s GP that I had stopped the removal.
GP: “HW informed me that the specialist nurse from the Continence Service had complained that she wanted to
remove Mrs Beddows’ supra pubic catheter and that Mr Beddows had stopped her” Matron: “GP is
inaccurate and misleading. I did not say this to GP”. Both myself and the GP confirm that she made this
comment to the GP in front of me at this meeting on 12th May 2009. In the NHS Wirral Letter dated 11th July
2011 the Head of the Continence Service confirms: “Mr Beddows did not try to stop it being removed.” By
telling the GP that I had stopped the removal the matron hoped that he would over rule the continence specialist
nurse and have the catheter removed. He told the matron that the supra pubic catheter was in my wife’s best
interests.

After I had commented that my wife was not receiving the right amount of fluids Elderholme had asked the
Nutrition and Dietetic Service for a reduction in fluids just to “prove” their neglect was correct. In order to ensure
that they obtained the reduction they told the dietician that my wife “ had been passing too much urine” despite
the fact that Elderholme did not monitor urine output. I was not aware of this deception until the dietician herself
told me a month later. Passing too much urine can be a sign of something more serious, so I asked nursing staff
for details. No one knew anything about such a problem and everyone denied having reported such to the
dietician. The GP writes in his statement “It is confirmed that Elderholme informed the Dietetics department that
Mrs Beddows was passing too much urine. I have no record that Mrs. Beddows was passing too much
urine.”Elderholme Matron: I can state that we never had or raised a concern that Mrs Beddows was passing too
much urine. NHS Wirral Letter dated 11th July 2011 from Head of the Nutrition and Dietetic Service, (Doc 1) :
“The records show that Elderholme’s RGN contacted the Service on 3rd March, concerned about Mrs Beddows’
fluid intake .... the RGN felt that this was too much as there was a high urine output.” Elderholme were not
being truthful at this meeting.

At the meeting the matron told the GP that made she had received complaints from NHS clinicians that I was
interfering in my wife’s care. The meeting continued. GP: “I was also told that the dietician had made
complaints that Mr. Beddows was interfering in the care of his wife”.Matron:“The many specialist nurses that

15
visited Mrs Beddows often made verbal complaints to Elderholme staff about Mr Beddows’ behaviour/demands
etc”. No such complaints had been made. The NHS Head of the Dietetic Service and the Head of the
Continence Service, the GP and the NHS CHC Manager have since confirmed in their letter (NHS Wirral Letter
dated 11th July 2011) that none of their staff had made any complaints about me. Elderholme were not being
truthful.

The matron was becoming exasperated that the GP was not believing her accusations. She was annoyed that
she had failed to convince him to restrict my involvement. He states “I was unhappy with the meeting as
(matron) addressed Len in a very aggressive manner.” The matron responded: “I was not aggressive, only
assertive in my manner”. The real intention of the meeting can be seen from the matron’s later statement: “Mr
Beddows did not know how close he came to being asked to leave”.

She then started to make more outrageous statements. GP: “Heather Ward complained to me that Mr. Beddows
was insisting on his wife being checked every hour. Mr. Beddows said that it was in the care plan but was not
always done” Matron: “The care plan required by Mr Beddows was not approved by a consultant or external
professional”. The NHS Physical and Sensory Disability Reviewing Officer reviewed clinical care and
approved the care plan annually. The 2009/2010 reviews show that hourly recorded checks were required in
Plan 7: “Check Hourly for pain and discomfort” Elderholme were not being truthful.

After the meeting the GP wrote to me with a copy to the matron. He suggested that if the matron objected to a
part of the care plan she should hold a review with all the NHS clinicians specified. Instead, the matron or
member of staff under her management and control, removed the appropriate page and destroyed it. Hourly
checks were no longer in the care plan. This was contrary to all UK Government Minimum Standards and NMC
policies on correct procedures for maintaining clinical records. NHS regulations state that if a care plan is
altered it should be done in such a way that allows the original still to be read.

Elderholme wrote to me to say that they considered checking when medication was given ie four times per 24
hours was sufficient. GP: “I have seen the letter from Elderholme written sometime after the meeting in which
they suggest that checking Mrs. Beddows when giving her medication four times per 24 hrs. is considered
regular enough. In my opinion a patient in Mrs. Beddows’s condition in a bed with detachable side rails is at
risk and checking four times per 24 hrs is insufficient”. Matron: “GP is incomplete, inaccurate and therefore
misleading. Never has this suggestion been made and is refuted by all qualified staff. We find what GP has
written baffling and totally untrue. May we see the letter that we have purportedly written.” The suggestion is
in Elderholme’s letter dated 23rd December 2010 and a copy is in NHS records. Elderholme were not being
truthful.

In her Independent Review of Health Aspects of Clinical Care of Mrs Beddows at Elderholme, February
2013 ,the Clinical Lead for NHS Merseyside concluded that: “the nature, intensity, complexity and
unpredictability of her care needs means that she requires regular monitoring every hour. The care plan for Mrs
Beddows should not be altered without a formal review of her care needs.” and in her Final Report the Head of
CHC / Complex Care for Cheshire and Merseyside CSU concluded that: “ there is evidence that the matron said
“will always check hourly” however there is no evidence that this was acted upon. Elderholme should not have
altered the care plan without a review of Mrs Beddows’ care needs by the GP or Consultant; evidence clearly
indicates that this happened. Elderholme therefore failed to deliver the care package as prescribed by the NHS
and from the GP’s perspective presented a risk to Mrs Beddows’ safety.”

Later on, although I had made it clear in an Advance Care Plan that I was not in agreement with issuing a Do
Not Attempt Resuscitation order, the matron asked my wife’s GP to sign one. GP: On 5th September 2011 I was
visiting Elderholme when HW asked me to countersign a “Do Not Attempt Resuscitation” form for
Mrs.Beddows. I asked her if she had discussed the implications with Mr Beddows and when she confirmed that

16
she had I signed the form. Matron: “At no point did Dr ask me if I had discussed this with Mr Beddows. Because
of Mr Beddows antagonism towards me I would not have raised this matter with him”. On 24th August 2011,in
the dining room about 3pm, the matron told me that she was getting DNARs signed for all residents following a
disagreement she had with the ambulance service. I reminded her that I did not want such an authority signing
for Doreen. This decision was entered in an Advance Care Plan and recorded within the care plan itself.
Therefore the matron’s statement is incorrect. Afterwards the matron told me that the DNAR had been signed I
told her that I was not in agreement with it and she replied that it was a clinicians’ only decision. This
contravened section 8 of the Human Rights Act .

Following the meeting my wife’s GP sent me a letter with a copy to Elderholme, in which he wrote:
I can confirm that I never thought for one minute that you were was not acting in the best interest of your wife. I have
known you for a long time and we have got on extremely well and I fully appreciate your concerns for your wife and have
absolutely no criticisms of this. I respect the attention that you have continued to give your wife over such a long period of
time and are continuing to want the very best for her.
Dr.Meyer

I made a complaint to Elderholme about this lack of integrity by the matron in giving false information to my
wife’s GP, and I explained why that information was incorrect. I made no complaint about the standard of care.
Elderholme refuted my complaint, saying that I was always questioning nurses, and suggested that if I did not like it I
should move my wife elsewhere. I told them that I did not accept their response. Despite my asking over several
months for a satisfactory explanation to the matron’s behaviour I was given no meaningful help to resolve
matters. They considered my explanations to be vexatious complaints which they refused to resolve over a two
year period. I did not believe that one clinician should lie to another. The NHS Duty of Candour calls for the
NHS and Independent Providers “to be open and transparent and encourage candour, openness and
honesty at all times”.

Elderholme would not investigate my complaint satisfactorily. The numerous different services who I approached
to help me resolve these concerns deliberately failed to do so. The Care Standards Act 2000 set out the
requirements that nursing homes must abide by. The care plan and complaints policies are important parts. They
are meant to be enforced by the Care Quality Commission (CQC). I approached them for help to enforce the
care plan but they said that they do not deal with individual complaints and “did not see a role for themselves in
the matter.” The NHS had the overall responsibility to resolve these matters under the National Framework for
Continuing Care Commissioning. They wrongly denied responsibility. Social Services, who arranged the
contract of care on behalf of the NHS, and Elderholme as a registered provider to the NHS in respect of my wife,
also had a responsibility under the Local Authority Social Services and National Health Service Complaints
(England) Regulations 2009. They all had a responsibility to log my complaint and investigate, none of them did
so. Each said it was the other party’s responsibility.

With all of this confusion I asked my wife’s MP to advocate on her behalf and she made a complaint to the
Nursing and Midwifery Council (NMC) about Elderholme’s lack of integrity. My concerns were not about the
standard of care per se, but that Elderholme, as an independent provider to the NHS in respect of my wife, failed
to ensure that its matron had followed the NHS Duty of Candour. The NMC asked Elderholme for their
explanation. Elderholme categorically refuted everything. The NMC accepted Elderholme’s repudiation without
any evidence, and, ignoring their own Code of Conduct, said that said that there was insufficient evidence to
proceed. They declined to investigate, despite the numerous examples of disregard to the NMC Code of
Conduct. The Matron made a complaint to her employers that she felt victimised by my actions. She claimed that
I had harassed and intimidated her because of the complaint to the NMC. Elderholme decided to evict my wife
because, they claimed, an irretrievable breakdown in the relationship between myself and the Home. This
“breakdown” was only perceived by the management of the Home and not by myself or the staff who actually
performed my wife’s care and with whom I had a good friendly relationship after so many years. Within three
years of the new matron’s arrival she had caused my wife to be evicted from her home of eleven years.

17
Before I was told about the eviction, the matter was referred to Safeguarding (consisting of the officers of the
NHS and Social Services who had refused to resolve matters earlier, as well as a Police Officer). They
authorised the eviction without allowing anyone to speak on my wife’s behalf. The Mental Capacity Act 2005
states that when any meetings are held to discuss a change of residency there must be an advocate, such as a
Deputy appointed by the Court of Protection, present to speak on behalf of the resident. I am my wife’s Deputy
but I was not allowed to attend their meetings, I was not even told that they were happening. I did not find out
what had transpired until six years later when I obtained the records through Freedom of Information.

The records show that Elderholme’s matron told the meeting that I “had made a comment about a shotgun saying
that he would kill himself and his wife”. Once Safeguarding had agreed to the eviction, Elderholme wrote a letter
to me setting out their reasons for the eviction. At the bottom of the letter they had listed that carbon copies had
been sent to the MP, Wirral Social Services, Safeguarding, CQC, the GP, DASS Complaints, the NMC, the NHS-
CHC and Merseyside Police. However, as I found out under the Freedom of Information, Elderholme did not
send these people true carbon copies – instead they had doctored the “copies” and added additional reasons for
evicting my wife which were not in the letter sent to me. One of these repeated the previous accusation writing
“His threat of violence to his wife witnessed by our visiting physiotherapist”. I have never threatened my wife
with violence. Both letters can be seen at www.scribd.com/doc/222292287/Elderholme-Eviction-Letter
Elderholme had purposely mislead Safeguarding participants including Merseyside Police. The additional
paragraphs also claimed that I had made multiple unreasonable demands and complaints, was a vexatious
complainant, behaved unreasonably, and interfered with care judgements made by clinicians. They said that I had
victimised, intimidated and harassed the matron. The evidence shows otherwise. There is no doubt that these
false statements influenced Safeguarding into agreeing the eviction without full investigation.

The Mental Capacity Act 2005 also states that all decisions made on behalf of a person with no capacity must be
made in their best interests. Following the meetings my wife’ GP informed Safeguarding that eviction was not in
my wife’s best interests but Safeguarding ignored his advice and my wife was evicted just before Christmas 2011,
and I was left to find a new home with no help from either the NHS or Social Services.

In 2013 Social Services produced a report which concluded that, “Mr Beddows was not a signatory to the
contract so contractually Mrs Beddows should not have been evicted for the perceived behaviour of her
husband”. Social Services admitted that they had failed to follow their own Safeguarding procedures and the
eviction should not have gone ahead without a proper investigation of Elderholme’s accusations. Safeguarding
failed to safe guard my wife. It took until 2019 for Social Services to process my GDPR rectification request,
when they accepted that their records contained fifty two incorrect statements, mainly by Elderholme and the
Safeguarding Team who had supported the decision to evict my wife. See the Social Services Report at
www.scribd.com/doc/226717785/DASS-Report-Elderholme-Evict-Doreen-Beddows

After the eviction I asked the NHS to investigate the circumstances. The NHS issued a “Clinical Review of
Care of Doreen Beddows at Elderholme” and concluded that “clinical care for Mrs Beddows at Elderholme
Nursing Home was compromised and fell below expected standards. Furthermore the Continuing Care Team
failed to follow expected standards in respect of its responsibilities and duties in respect of Mrs Beddows.” A
later Final Report concluded that Elderholme had failed to deliver the care package prescribed by the NHS,
presenting a risk to my wife’s safety. The Report also concluded that I was only insisting on the care described
in the care plan, and the NHS had failed to resolve my complaints as they should have done. Both the NHS and
DASS had failed to follow their own policies and guidelines to rectify the failure by Elderholme to meet
expected standards of care. Both apologised and I accepted their apologies in writing and I considered the
matter closed. See NHS Clinical Investigation Report at www.scribd.com/doc/226717371/NHS-Clinical-
Report
and the Final Report at www.scribd.com/doc/226717601/NHS-CCG-Final-Report

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In 2015, over twelve months after the Final Report was completed and published, and I had accepted it in
writing, Elderholme disputed the findings. They demanded that the NHS-CCG withdraw the Reports, writing:
“Elderholme seeks: withdrawal of the report and an acknowledgment that damage has been done to the
reputation of Elderholme and our matron manager and suitable recompense for that damage.” The Final
Report had brought together the evidence of the Head of the Nutrition and Dietetic Service, the Head of the
Continence Service, the Manager of the CHC department, NHS Merseyside Clinical Lead, the Clinical
Quality Lead from the CSU, CHC Head of Complex Care, and my wife’s GP. The Final Report was the result
of their investigations which they had reached on the basis of NHS records including CHC Annual Reviews,
and Elderholme’s clinical records. They had not relied on my statement. Their findings were viewed in light
of NHS policies including the National Framework for Continuing Care Commissioning, Care Planning and
Case Management, Supporting People with Long Term Conditions – Commissioning Personalised Care
Planning, NHS Record Keeping, Local Authority Social Services and National Health Service Complaints
(England) Regulations 2009, National Minimum Standards C30, the NMC code of conduct no.44 and the
Mental Capacity Act 2005. The NHS Wirral CCG’s Chief Officer, a CCG Governing Body GP and the
CCG’s Director of Quality & NHS Patient Safety, over ruled all of those contributing clinicians listed above,
on the basis of “evidence” from Elderholme. They ignored the forged copy letter and the false threat of
violence and the extensive investigations by so many experienced clinicians; they ignored NHS own policies
and their own records and meekly accepted false statements from Elderholme. They wrote about the Final
Report: “Elderholme has refuted this and provided evidence to demonstrate that it cannot be substantiated
due to some examples of material inaccuracies and conclusions which are not wholly substantiated by the
evidence.”

I asked both Elderholme and the CCG for copies of this new “evidence”. They refused to let me see it. I applied
to the Commissioner for Freedom of Information who decided that all of the documentation was the personal data
of myself and my wife and ordered the CCG to release Elderholme’s “evidence” to me. The Commissioner also
confirmed that as it was our personal data we were at liberty to place it on the internet if we so wish. It took the
CCG nearly two years to comply. When I eventually obtained this “evidence” it became apparent that Elderholme
had made false statements to Safeguarding and others that I had threatened my wife with violence and had
circulated a letter which they claimed was a copy of one sent to me but was no such thing. That the NHS allowed
such complete lack of integrity by one of their registered providers illustrates how far the NHS has disregarded
their own standards. NHS Wirral CCG’s Chief Officer, a CCG Governing Body GP and the CCG’s Director of
Quality & NHS Patient Safety, over ruled their own clinicians and policies under Elderholme’s threat of seeking
damages. They met with Elderholme and accepted all of their evidence. They did not interview me or ask me for
any evidence before issuing the retraction report. The reasons given by the CCG for issuing the Retraction Report
are bogus. For example they state “there is no evidence that the need for hourly checks were ever documented as
part of a clinical assessment of Mrs Beddows’ needs.” However the NHS’ own Physical and Sensory Disability
Review officer made clinical reviews annually and her Reports from 2008 onwards confirm that hourly checks
were required and were written in the formal care plan. These Reports prove that the CCG were knowingly
making a false statement in order to appease Elderholme. The NHS Annual Clinical Reviews of Clinical Needs
can be seen at http://www.scribd.com/document/390650412/NHS-Annual-Reviews0002 .

Overall Elderholme circulated a falsified document, made false accusations against me and the GP, gave
incorrect information to the dieticians, neglected to monitor urine, gave the GP false information which would
have been detrimental to my wife’s care, and was aggressive. They did not record their decisions as required
under the Mental Capacity Act 2005 or handle complaints according to The Local Authority Social Services and
National Health Service Complaints (England) Regulations 2009. They altered a care plan without following the
proper procedures as in the National Framework for Continuing Health Care Commissioning, Care Planning and
Case Management or the NMC code of conduct clause 44.They asked the GP to sign a Do Not Attempt to

19
Resuscitate authority knowing that it was without my agreement contrary to Article 8 of the Human Rights Act.
The NHS and Social Services have apologised. Elderholme have repudiated all of it. The NHS had final
responsibility for my wife’s care. That care was sub contracted to Elderholme Nursing Home. When the Home
demonstrated a complete lack of integrity which reflected on my wife’s care, the NHS and Social Services
refused to resolve matters. Both parties were represented on the Safeguarding committee but failed to meet their
obligations under the Mental Capacity Act when they refused to allow anyone to speak on my wife’s behalf. The
nursing home, the NMC, CQC, the NHS PCT and then the NHS CCG, Adult Social Services, Safeguarding, and
the PHSO are all there to protect the health and safety of patients who are at risk, and assist people with no
capacity such as my wife. Through ignorance or a determination to protect each other, all parties failed in their
purpose. These organisations in fact ignored policies and statutes intended to protect patients and their relatives.
More important than the complaint, or indeed the eviction itself, is that there continues to be a failing health
services complaint system that on paper is there to protect people with no capacity, but in reality gives all of their
support to the perpetrators rather than the patient – in this case one with no mental capacity. There is a culture
throughout that demonstrates that these organisations will do everything that they can to protect their colleagues
in care. It is typical of the institutional indifference exercised by those in authority who pretend to offer quality of
care and protection to people at risk but in reality ignore their own guidelines, policies and even legislation.

There are no “lessons to be learnt” from this elongated experience. All of the policies, statutes and Frameworks to
protect patients with no capacity such as my wife, are all in place - they were just ignored on purpose because
they conflicted with the ulterior motive of those involved. If each party concerned had applied those policies then
the whole matter would not have happened. The NHS Duty of Candour calls for the NHS and Independent
Providers “to be open and transparent and encourage candour, openness and honesty at all times”. NHS
Wirral CCG failed to meet that duty. Of course the original problem was Elderholme’s lack of integrity and
management failings. In their inspection reports from 2012 up to as recently as 2019 CQC state that Elderholme
management “requires improvement” and mentions a lack of understanding of the 2005 Mental Capacity Act. So
nothing changes and the NHS, through its arrogant, toxic culture of systemic disregard for both the truth, the law
and their own stated policies makes its priority not to ascertain the facts but to protect its colleagues in care from
any criticism. NHS administration destroys all the good work carried out by the vast majority of practising
clinicians. You may think, well this was a long time ago. Unfortunately two ladies from our church have
experienced almost exactly the same circumstances, seeing their very ill husbands evicted from nursing homes for
complaining. On both occasions neither were invited to Safeguarding discussions.

More detailed information and evidence referred to can be seen at:

www.scribd.com/doc/343771600/Statements-Comparisons-2017
and to see why the complaint process took so long see
www.scribd.com/document/234508123/Complaint-Process
www.scribd.com/document/251161043/Documentary-Evidence
www.scribd.com/doc/222292287/Elderholme-Eviction-Letter
www.scribd.com/doc/226717371/NHS-Clinical-Report
www.scribd.com/doc/226717601/NHS-CCG-Final-Report
www.scribd.com/doc/343138980/CCG-Elderholme-Responses-to-Final-Report
www.scribd.com/doc/226717785/DASS-Report-Elderholme-Evict-Doreen-Beddows
www.scribd.com/document/390650412/NHS-Annual-Reviews0002.
www.scribd.com/document/390650323/Hourly-Checks-Evidence
www.scribd.com/document/343138119/Elderholme-s-TIMELINE-of-Complaints

Christmas Day 2010

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PART FOUR - Vale Court Nursing Home

We changed nursing homes in 2011 and the events leading up to that are detailed later in Part Two. With no help
from the NHS or Social Services, and after visiting half a dozen homes, we found a room at Vale Court Nursing
Home in Whitby, Ellesmere Port. We moved on 6th December 2011.Since moving home the clinical review
which Elderholme would not co-operate with has taken place and Doreen has had her medication reduced, is
more alert and has received intensive therapy from an NHS neuro rehabilitation consultant. She has received her
first review in fourteen years from both OT and Physio departments. Checking hourly, which was considered
unnecessary by Elderholme, is routine for ALL residents in bed at her new home. Vale Court has an excellent
caring staff who have looked after Doreen since 2011. I am involved in her care and this has presented none of
the problems that Elderholme management caused.
I take Doreen home on Thursdays as ever and we have joined St.Thomas’ church near by where they have made
both us very welcome. After my experiences at Elderholme I have deliberately withdrawn from most Home
activities and Doreen and I tend to keep to ourselves.All nursing homes were closed to visitors on 13th March
2020 because of the covid 19 pandemic. Doreen and I have been separated for the first time in twenty one years.
This is bound to have repercussions to our relationship in the years to come if either of us survive.

PART FIVE - The Last Twenty Years

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Doreen’s medical situation has been more or less the same since 2000 irrespective of her location. Her care has
been provided in nursing homes and during that time she has experienced a repetition of similar problems
interspersed with periods where she has been quite settled and in good health. She comes home for a few hours
once per week and I take her for walks in the grounds and local parks in her chair. We go to church every
Sunday. Since she first went into hospital two of her friends visited regularly and looked after Doe’s eyebrows
and facial hair. Her hairdresser, another friend, also comes every other month and cuts her hair. I had not met
any of these people prior to Doe’s illness but they continue to visit twenty years later. I would help bath Doe
and wash her hair then give her a blow dry and facial. When we washed her hair in bed she would raise her head
off the pillow. She also murmurs or hums a lot, sometimes for up to an hour, as if trying to talk. I would
murmur back to her and she appeared to respond to that. She throws her head forward a lot and spasms with her
arms. I ask her to blink a lot for yes rather than one for no or two for yes, because that was too specific for her
to understand. It sometimes works although you could never be entirely convinced. She sleeps quite a bit but
does have a sleep- awake pattern which demonstrates that she is not in a coma but in a state of very low
awareness.

I was originally told that Doreen may have locked in syndrome, in which she is aware of everything but cannot
communicate in any way. People often ask me whether she knows me. I think that she recognises me as someone
who holds her hand, helps her and caresses her face to get her to sleep and such like but anything else is difficult
to be sure of. It does not matter if she does not know me – I know her. A couple of years after Doe took ill, her
mother went into a care home with dementia. I would take Doe to visit her and neither would know who the other
was. Doe’s mother eventually passed away and although I took her to her funeral, she did not make any sign that
she knew what was going on. Doreen absolutely loved children. Before she became ill she knew that our daughter
in law was expecting a baby girl and she was over the moon. Now she was ill, the baby was born and brought into
the neuro centre to see Doe. Doe did not appear to give any indication that she was looking at her grandchild. If
she could show any sign that she was aware it would have been then. After that I knew that she would not be
recovering.

Stimulation seems to have little effect. She reacts to loud sudden sounds, such as a door banging or someone
screaming. If I hold a photograph in front of her then move it slowly round to her right, her eyes, and sometimes
her head, will follow the picture. If I ask her to blink a lot in answer to a question she will sometimes do that. If
you touch her tongue with garlic or with a drop of water she shows no reaction to either and to all intents and
purposes she seems to notice very little. She can however show her distress to pain or severe discomfort but it
is often difficult to ascertain where the pain is. As she can’t tell you what the problem is, it’s a case of checking
everything trying to find the reason. Initially she would grind her teeth and bite her lower lip to such an extent
that she chewed off large parts of it. Her teeth are now ground down almost to gum level which means that oral
care often results in bleeding. I take her to the dentist every six months just to see if any thing is apparent that
may cause her pain.

The physio believes in positioning rather than exercising and has done away with the arm splints with no
apparent detriment. Doe sometimes has unexplained cuts and scratches on her face and arms. Her arms are
generally quite relaxed but occasionally she makes involuntary movements with her arms but when they cross
each other she may spasm, digging her nails into her skin until she had drawn blood. On occasion, if left in an
inappropriate position, she scratches her face very deeply causing quite a bit of damage to her cheek or
eyebrows. Her legs are stiffer than ever and she has “moon boots” to help support her ankles and stop them
from drooping. We stopped using her neck brace, adjusting her chair to keep her head balanced. However this
meant that she would throw her head forward quite a bit. I tried tying a nylon round her head and tied to the
headrest but the matron told me that it wasn’t allowed as it would be considered as a restraint. It would be some
years hence before head supports were allowed if described as “training head bands”! The band which connects
the headrest to the head round the forehead is loose fitting. The idea is that when Doe feels her head coming

22
forward and the band stops it she will let her head return. After several years it does work. We also did away
with the chair’s breast plate which was often pulled too tight into her chest leaving indentations.

Doreen is, of course, nil by mouth and receives her feed through the tube called a peg. It pumps in 2000 mls
over a ten hour period during the night. When Doreen moved from the hospital her feed also changed to a
different one. She was often subject to projectile vomiting with no warning. This would also happen when she
was given water. It was decided to dilute the feed with the water input and this appeared to help. She also had
medication to reduce vomiting, although the problem continued if she was moved - such as hoisting her out of
or into bed - too quickly before and after feeding or medication. In hospital she had also had flavoured drink
additives which she invariable coughed up. When these were stopped that also helped. Water input was also
increased beyond normal levels because of the osmosis effect with her three per week enemas. Doreen’s hair
and nails grow at a great rate. Her complexion is generally good with few wrinkles and her hair still has little
grey in it.

On one occasion Doreen had her original peg tube changed under a general anaesthetic which necessitated a
trip to Arrowe Park. It was replaced with one which can be changed by deflating a balloon. They called me in
to recovery because they were not sure if she had come round or not because of the way she normally presented.
The peg tube would sometimes block and other times be pulled out perhaps during dressing. If there was
difficulty in either getting the peg out or inserting a replacement then a trip to a and e was made. In the earlier
years there was a specialist nurse at the hospital who worked wonders with pegs. They were quite a regular way
of treating patients in those days. When we first went into Elderholme there were over twenty peg fed patients.
However the NHS made a decision not to insert pegs unless made necessary through cancer – what happened to
those patients who could no longer take food normally? This reduction meant that experience of changing peg
tubes all but disappeared within hospitals. We were in a and e one Christmas Day and they had no spare pegs as
stock had been transferred to the community and they were on holiday. I went to several local hospitals and
eventually found one with a peg tube. In Wirral care home nurses can change pegs but in West Cheshire they
had to be changed in hospital because there had been an accident in the past and a patient had died after a peg
had been changed incorrectly in the community. Another example of how different areas within the NHS
operate different procedures. In 2019 a new kind of peg was introduced – one which only need changing every
twelve months. It takes two specially trained clinicians from the hospital to change it but it has worked very
well with much fewer problems.

At twenty past ten one evening the night nurse, telephoned me to say that she had called an ambulance to take
Doe to the Countess. Apparently the balloon had blocked and the nurse was concerned that some feed may have
aspirated (taken her feed into her lungs instead of her stomach) and this can cause pneumonia. We got into a
and e at eleven. The duty doctor was not au fait with changing pegs as they are seldom called on to do so these
days, especially at night. A nurse helped him by reading out the instructions. He tested for the ph level in
stomach fluid and was concerned that it was too high. He called the registrar then the ward manager from the
gastro enteritis ward. The Home later told me that Doe was on Lansoprazole to reduce the amount of acid in the
stomach and that is why there was a high ph level! It was shown on the medical records which had accompanied
Doe to the hospital. Why did doctor in a and e not read the notes? At one fifteen the nurse said that Doe was
clear to go and she would call an ambulance to take her back to the Home. At six am the ambulance still had
not come. Doe was asleep and comfortable so I decided to go home and leave them to transfer her back to the
Home. At ten thirty the next morning I telephoned the Home to check if Doe was back ok. The nurse checked
the room and said no she wasn’t. I returned to the hospital. No one had given Doe any feed or fluids for over
36 hours. At about three o’clock in the afternoon the nurse asked me when I had been told that an ambulance
had been booked. I told her at one fifteen this morning. She asked who told me and I replied a and e. Apparently
both the hospital and the ambulance service had no record of a booking. One arrived at four - fifteen hours later
and took us back. It was a private ambulance –from Manchester.

23
There were similar hospital visits with catheter problems. Doreen had been fitted with a supra pubic catheter
which enters the bladder through a stoma in the belly. This was inserted as part of a continence management
exercise and was considered the best option for her. It did cause problems however if it became blocked with
bladder debris. It also need changing every three months or so, by which time the skin had grown around it
which made extraction and replacement a painful experience for Doe. It could take up to twenty minutes to get
the tube out and maybe a similar time to insert the new one. This was because Doe would tense her tummy
muscles which closed the stoma .One had to wait for her to relax. Other times when she was relaxed the tube
would exit and re insert without problems. This difficulty was due to Doreen’s neurological condition but it
frightened some nurses who thought they had done something wrong when changing it for the first time. On
occasion when it seemed impossible to re insert the tube, I would have to take Doe to a and e.

One typical occasion was when the nurse could not get the old catheter out and had arranged an ambulance and to
go to casualty at Arrowe Park. We got there at three and the reception nurse said that we should have arranged to
have Doreen admitted to a specialist ward. I said that the nurse at the home could not get it out. "so they sent her
to us" she said sarcastically, and none too pleased. After two hours a doctor took the catheter out. He had some
trouble but eventually succeeded. He kept pushing it in. I said that at the home we marked the tube to show how
far in it went. He said nothing. No urine came through so he poured in 250 mls with a syringe but still no success.
He waited half an hour and still none but he said that we could go back and not to worry as it couldn’t have gone
anywhere else because there was no where else the tube could have gone. We got back to the home just gone six
and were putting Doe back. Julie was washing her back when she said "What's this? "It was the catheter. It had
come right through her bladder and out of the uterus. The balloon meant to keep it inside was blown up on her
outside. The surgeon was wrong – it could go somewhere else! The Home’s nurse had to change it herself after
all.

On the next occasion a guy from the theatre came to a and e and I explained the problem to him. I said that if he
could get it out there would be no problem in getting it in again. This proved to be the case. I said that I hope he
did not mind if I checked that the new catheter had not come out of the urethra. He said not at all - he was glad
of all the help that he could get because he was from ENT and seldom worked at this end of the body! At
another time I accompanied Doe to the theatre where the urologist enlarged the stoma and inserted a larger sized
catheter hoping to stop some of the blockages. Doe did not have an anesthetic and you could see that the
procedure was hurting her. Afterwards the nurse brought me a cup of tea and piece of toast, as if it were me that
had been the patient! The urologist gave me precise instructions for the catheter regime but when I pass this on
to the Home I am told that they know what to do!

Infections are another fairly regular occurrence. They appear around the sites of both the peg and the catheter
tubes. The most dangerous for her are chest infections which can continue for long periods. There was a
disturbing occasion when the GP examined her when she as passing blood a lot and he suspected a cancer. She
recovered after a course of anti biotic. At another time she had a skin cancer on her nose. She sometimes has
panic attacks which resembled petit mals, and which leave her struggling for breath. After a year in the Home
Doe had what appeared to be a stroke. The GP took me to one side and said that he feared that the end was near,
certainly within the next twenty four hours and did I want her to go into hospital. I said that I was happy with
the nursing at the Home and was content for her to be left in the Home. I sat with Doe until eleven in the
evening when I had a strange peaceful feeling and was convinced that she was not in danger any more. She
was settled and calm. She did not appear to be panicking. I returned before eight the next morning. The GP
came at ten and said that he had fully expected a call this morning to tell him that Doe had passed. He had come
in to sign the death certificate! He was delighted with her condition and felt that she would now recover. For
the next few days she had difficulty breathing in a regular pattern. Her colour had returned. She had a relapse a
couple of days later and the GP had to be called back because her breathing was stopping for long periods and
was then very shallow. She then got a chest infection and a further uti then contracted thrush in her mouth. She

24
seemed to be constantly having courses of antibiotics. She was making a lot of saliva which she could not
swallow and would have coughing spasms which distressed her.

Sometimes when she is having a panic attack she shows a lot of distress and gasps for breath. She clenches
her teeth tightly which prevents her from breathing properly. I have to force her mouth open until she realises
that she can breathe again. Another chest infection had to be treated with a nebuliser. She passed a tremendous
amount of saliva and had medication to dry her mouth. However this eventually caused constipation in her
upper chest with being too dry. Everything was trial and error with Doe not being able to tell us anything. Doe
had a boil like lump near to her catheter site. A nurse tried to burst it which left a gaping hole. That wound
continues to cause problems sixteen years later – it has never healed.

One Sunday I had taken Doe to church. She was murmuring quite a bit and was restless. After the service she
seemed drained and listless and I knew that something was not right. I hurried back to the home by which time
Doe was grey and showed her to the nurse who said to get her back to bed asap. Doe was struggling to breathe,
panicking and in spasm. Her fists were clenched and she was keeping her mouth tightly shut preventing her from
breathing properly. Her hands were becoming black and her feet also. Irene rang the doctor. Doe had a
temperature but felt cold so the nurses decided to call the paramedics.

They arrived quickly and asked how long Doe had been like that. I said an hour meaning she started to be ill an
hour ago. He shouted "This lady is having a grand mall seizure and you have left her like this for an hour! Who is
in charge? Why haven't you given her oxygen? He was speaking into a radio link to the hospital saying "Grand
Mal fit for over an hour no oxygen. Trying to insert diazapan." He tried again to insert an i.v.f line in the arm but
couldn't. He asked me if it was all right to inject rectally and I said of course. He then asked me who I was. When
I said the husband he said that he should not have been discussing the medical side in front of me. Doreen was
transferred to an ambulance trolley, given oxygen and wheeled out to the ambulance.

At Arrowe Park hospital they gave Doe an ECG and blood and urine tests. She also had a chest x-ray which
showed that the chest infection was not very bad at all. It appears that she has a bladder infection. They gave her
oxygen and stabilized her giving her paracetamol to bring down her temperature. They decided to keep her in for
a few days until the infection had been identified and to control her temperature. It really looks as though she did
not have a seizure as such but a rigour which is like a fit and is caused by a sudden change in body temperature
such as happens with an infection. We moved onto ward 33, where we were back in 1999, and sister Tracy Orr
was still in charge. She gave me a hug of welcome. I had to return to the Home to get Doreen's drugs and her
food. They took several blood tests to ascertain the level of carbamazepine in her blood. She had this drug
regularly to prevent epilepsy. Maybe there was too much thus giving symptoms of a fit. Doe was more awake,
coughing quite a bit. After four days in hospital Doe was discharged with antibiotics to continue. They had
transferred her from the bed by pat slide .An ambulance took her back to the home. When Chris came to set up
her feed we found that her peg had come out. It must have caught on the pat slide .I helped Chris put in a new
peg. It had come out earlier because the stoma had started to fill in. A size 14 was used instead of an 18.Doe slept
ok after that. End of another episode. There were similar ones at different periods over the following years.

One of the many problems faced by relatives of care home residents is the differing instructions given by the
different nurses/clinicians. For example the CQC inspector said that Doreen must have padded bumpers placed
over her bedrails to prevent her feet slipping between the rails. Later, after they had been placed, another said that
the bumper shielded Doe’s vision when prone in bed and therefore deprived her of sensory rights. It leaves the
relative in the middle.

I can understand why nursing home staff are sometimes exasperated with relatives, but it is a two way street.
Not all relatives are the same….but neither are all staff. If I were to give one piece of advice it would be that
relatives and staff should agree a care plan which includes the wishes of the resident as expressed by their

25
relative and an honest opinion of the staff member as to what the Home can actually provide. Expectancy has to
be realistic. One to one nursing is not possible even though some homes say that it is in their brochures. This
means that there has to be some leeway by all parties.

Over the twenty years so far there have been many worrying times when the end has seemed very close but
Doreen has always pulled through. She always had a very determined character and she manages to overcome
all the obstacles placed in front of her. This makes me think that she really does know what is happening.
However in March 2020 we had covid and everything changed.

PART SIX - The Covid years 2020/21

MARCH ‘20

On 12th March I had taken Doe home for the afternoon as I always did on a Thursday. When we got back her
breathing was bad. Antibiotics were prescribed for a chest infection. The following day, I received a telephone
call from the Home to say that visitors were banned from the Home because of the covid situation. For the past
twenty one years I have visited my wife for a minimum of six hours every day. I have been totally involved in
her care. It had been her birthday on 10th March and her cards still decorated the walls. Why the decision to
close had to be done without any notice and ten days before the official lockdown, has never been explained
but is indicative of a general apathy by nursing homes towards visitors.My first reaction was to ascertain the
validity of the Home’s decision, as after all staff were going in and out as normal so there was no apparent
difference in the risk factor. As my wife is a Continuing Health Care patient, I called the CCG only to be told
that it was up to the Home. That was not legally true because the CCG remained responsible for my wife’s care
and have to ensure that her best interests are provided for. I pointed out to them that this development was
threatening my wife’s right to a family life and closure was a deprivation of social contact. I asked Public
Health and they said that they had not given any instructions that Homes had to close but again said it was up to
the Home. I approached Safeguarding but they said it was not an issue for them. By the end of the afternoon it
became apparent that no one was going to help me to clarify the situation.

The following day an agency nurse called me to say that she was concerned about a wound that my wife
suffered next to her supra pubic site. I explained that it was an old problem and told her how it was usually
treated. Doreen had an eye appointment booked for the following week at the Countess Hospital because of an
infection. The Home called me to say that they had cancelled it because of covid. On the day of the cancelled
appointment the Home telephoned me to say that my wife’s eye was really bad and they had booked an
emergency ambulance to take her to hospital. I got another call to say that they could not get Doe’s wheelchair
into the ambulance and would I go to the Home and go with her in a taxi. When I arrived with a taxi it took
considerable manoeuvring and the assistance of the ambulance man and the driver to get the chair into the taxi.
A planned visit cancelled then became an emergency and an emergency ambulance can’t accept a wheelchair.
After seeing the consultant and obtaining a prescription for three months supply of antibiotics I took Doe in her
chair out to the taxi rank. Three taxies came and went refusing to accept the chair. Eventually we got back to the
Home and I had to leave Doe at the door.

APRIL ‘20

No one from the Home called me and then I found out by accident that they were allowing face time telephone
calls to residents and this had been going on for over a week. On 5th April I gave it a try. A member of staff
called me back in the afternoon. Doreen was asleep in bed when she would normally be up in her chair. I was
told that they were only getting her up every other day. I insisted that this change and they go back to getting
her up every day. I carried on trying to make weekly facetime calls over the next months. Calls had to be pre

26
booked but of thirty attempted facetime “visits” between April and September, eleven were either cancelled or
no staff available to hold the ‘phone. Of the remaining nineteen occasions Doe was asleep throughout the call
on twelve occasions. That leaves only seven calls in six months that I could actually try to make eye contact
with her.

MAY ‘20

In May Doe needed antibiotic cream applied on a

lump which had appeared on her forehead. I was told
that Doreen had an “episode” the previous day and
there was concern over how to calm her. I explained
that sometimes Doe would clench her lips so tightly
that she could not breathe. The longer she did this
the more desperate she becomes and one has to
force open her mouth to show her that she can still
breathe. As she realises this she starts to calm down
and returns to normal breathing. It can be quite
frightening for someone who does not know her.
Staff are not so au fait with how Doe can present
because I used to be with her so much and I would
deal with such problems as they arose without staff
becoming aware. No one had called me until the
following day.

JUNE ‘20

Fathers’ Day
This lack of familiarity became apparent again when the
headrest on Doreen’s chair required repair. She has a second
one in reserve but instead of using that staff kept Doreen in bed
for over ten days. I went to the Home and repaired the headrest
but it still was not used. The assistant manager made a referral
to Safeguarding that I was insisting that they use cellotape on
the headrest when I had made no such comment. How could I
insist on anything when I was not even allowed in the Home?
Safeguarding said it was not an issue for their involvement. I
was not aware of this exchange until six months later. I spent
most of June on the telephone and email trying to co-ordinate
repairs to my wife’s wheel chair between the NHS, the repair
company, the Home and the two suppliers of parts. Constant changing of staff made this
exercise extremely frustrating, particularly as it would not have been necessary had I still
been allowed to visit.

JULY ‘20

On 8th July I got my first opportunity to visit Doreen in the Home’s reception area. On the
morning of the visit I got a call from the Home to say that the visit had to be cancelled

27
because her chair was still not fixed. There are other types of chair within the Home and
eventually I persuaded them to use one of these at my risk. I had to sit two metres away from
her with people coming and going through reception. I could not attract her attention and
when I stood up the member of staff who accompanied Doe told me to keep away from my
wife. This from a person who was probably more at risk of passing on infection than I was
who had been in isolation since March. I can’t tell you how painful it is to be told to stay
away whilst someone who hardly knows her is right next to her. Doe was asleep and from
two metres away I could not make any contact with her. Three weeks later I was allowed
another visit, this time just outside the main door. Doe opened her eyes now and again but
they looked dull and disinterested. I went to adjust her head rest and was told to step away.
We had twenty minutes before I was told that time was up. It’s as if Doreen is theirs and not
my wife. I was rather upset by the whole episode. The visits were arranged between long
periods when the Home was closed due to covid outbreaks, mainly amongst the staff.
On this visit I was told by the attendant that staff had told her to tell me that they had cream
for Doe’s mouth. I said I did not know about her mouth – I only knew that she had an eye
infection. The attendant said “oh maybe it was her eye then”. I called Vale Court and spoke
to the nursing assistant who said Doe had oral thrush and they had cream for it. I said that no
one had told me. I said that I want to know when this sort of thing occurs. The assistant
manager phoned me back and apologised. She said that Doe’s mouth had been very dry so
they had spoke to the GP’s surgery who said to stop the patch that controlled saliva and make
it PRN. Doe has had that medication for twenty years when she was making so much saliva
she was choking yet no one had informed me that it was now stopped. The nurse said they
were keeping Doe’s head up and she now had a pink mouth and they would monitor it. She
assured me that I would be informed in future. I sent an email to Deputy Manager at Vale
Court asking them to ensure Doe’s arms are resting on the arm rests when she is in the chair.
I said that I wanted to be advised in future when the GP is called.
Despite this request later on in July Doe had a rash on her tummy and the Doctor prescribed
antibiotic cream. She then had a course of antibiotics because of a lump. Later she had
bleeding from a catheter site wound and poisonous exudate. None of these matters were
reported to me. I was no longer receiving copies of the care plan notes. After twenty one
years of being in daily involvement I had in effect been isolated from my wife’s care. I only
found out about these incidents when I saw the care plan months later. The care plan actually
stated “Len continues to receive a daily telephone call with an update of Doreen’s health and
wellbeing” when this was just not true. I repeatedly asked for copies of the care plan via
email but this was not done.

AUGUST ‘20

The Home is still closed due to covid cases and facetiming

on the phone could not be arranged due to staff shortage. I
was asked to give permission for Doe to have a covid test.
It proved negative.
During August there were further problems with the
wheelchair headrest. The headrest was not supplied by the
NHS because they said that the chair was only required
for mobility. I had supplied the headrest myself. It had
been used for over ten years and was a training tool in that
when Doe’s head came forward and touched the
headband, she would realise and let her head drop back to

28
the rest. It was not a restraint and did not stop Doe’s head from coming forward onto her
chest when she really wanted it to. However now the Home claimed that when her head was
on her chest her breathing was threatened and the deputy manager said she must stay in bed
again. They were being totally over the top – her breathing was not a problem over the past
ten years so why now? I eventually bought a different head band to fit the new headrest and
normal service was eventually restored.

In July I had discussed the lack of visiting with my wife’s neuropsychologist who had
assessed Doe in 2014 and he wrote a letter giving his opinion that Doreen was in danger of
slipping into atrophy and he recommended that I be allowed to visit her in her room without
social distancing for a minimum, of two hours every day so that I could stimulate her in the
same way as I used to do before lockdown. I asked the Home management for a meeting to
discuss the lack of visits and on 12th August we had a meeting. I told them that this
prolonged lack of contact with Doreen was not in her best interest and I should be allowed
close contact. I showed them the letter from the consultant but was told that the Home’s
insurance prevented visits during the present covid situation but they would ask CQC and
would also arrange for someone to give Doe exercises. How ridiculous that I cannot see Doe
– the Home has further covid cases – but a stranger can come in and do exercises.

At a later meeting the Home told me that they had spoken to Public Health England and CQC
who had both said that visits without social distancing, as requested by the Consultant, were
not allowed. The Home, however, were going to acquire a visiting pod – a small porta- cabin
with a glass partition in the middle separating resident from visitor – and I would be allowed
a half hour visit once per week sitting two meters distance and separated by glass. I said that
this was not what the Consultant had recommended and I would apply to the Court of
Protection for a decision as to what would be in Doreen’s best interests, ie non social
distancing during more regular in person visits. The Home were not adverse to this course of
action.
As my wife is an NHS Continuing Health Care patient the Home informed the CCG. They
raised no objection but appointed a large firm of solicitors to represent Doreen, the NHS and
the Home at the Court of Protection. As the Court case was about Doreen’s best interests and
not a claim against the NHS as such, the NHS lawyers offered to represent me as the
Applicant also. There were half a dozen detailed forms to complete and Court fees to be
paid. I attached the consultant’s letter and confirmation that I had advised the Home about the
matter. On 24th August we received notification that there would be a telephone hearing for
directions on 8th September.

On the 29th August I finally had another visit with Doreen over a month since the last one.
The new pod had arrived but Doe’s chair would not fit in so we met in the reception area. She
slept all the way through my fifteen minute visit and I could not attract her attention from two
metres away, not helped by people walking through reception all the time.

SEPTEMBER ‘20

On 3rd September I was allowed a fifteen minute visit within the “pod”. I sat one side of the
glass wall and Doreen was brought into the other side but her chair was too long and so she
sat partly outside. The infrequent outside visits that had been allowed were not meeting my
wife’s needs or my own and all had similar negative results.

29
On 8th September we had the first Court Appearance which was conducted over the telephone
on a party line so we could all hear each other. As Doreen is a continuing health care patient
her care remains the responsibility of the NHS area where the illness first started and that
does not change even if one moves to a different area. As we used to reside on the Wirral,
their CCG remains responsible. Therefore attending the hearing were the lawyers, the legal
departments of both Wirral and West Cheshire councils (who are responsible for visiting
policies and infection control within their borough, and the NHS lawyer, the nursing home
and myself.

It was a fairly short hearing – about an hour. The first issue was that the Home had made an
application some months earlier, to Social Services for them to issue a Deprivation of
Liberty Declaration (DoLs) which would prevent me from taking Doe out of the Home. I
couldn’t anyway because of covid. An over zealous assistant manager had decided that
because Doreen had side rails on her bed (as she had done since 1999) they considered that
this represented a deprivation of her liberty and they needed official agreement to this.
Because the original illness was in Wirral, the Wirral Council had to handle the Home’s
application for a DoLs order. However, several months later they had not responded to the
application. (it is doubtful if bedrails alone represents a deprivation of liberty which was
probably the reason for Wirral not responding.) As the order was still outstanding, the WBC
solicitor was also asked to attend.The judge said that he wanted this matter clarifying before
proceeding further. Because the Home was in West Cheshire the local Council were also
represented by their solicitor. The CCG’s solicitor acted for the Home as well. She also
kindly helped me. Wirral Council were ordered to provide a statement to the Court regarding
the DoLs application and how it was to be determined. I had to provide a copy of the Court
of Protection Order appointing me as my wife’s Deputy. He asked the West Cheshire Council
and the Home to produce their visiting policies. He also asked the Home to advise how they
could facilitate my visits and if not why not. He also wanted to see a dynamic risk
assessment. Other documents relating to Doreen’s care and medical history were also
requested. All of this had to be completed before a further hearing on 7th October.

Wirral Borough Council Deprivation of Liberty department wrote to me to apologise for

having ignored the Home’s original DoLs application. I pointed out to them that I did not
support such an application as bedrails hardly represented a threat to my wife’s liberty. If
such an order were granted it could mean that the Home could prevent me from taking my
wife out of the building. The council appointed an independent GP to assess Doreen. Because
of covid this assessment was to take place over the internet with a video link assisted by the
Home’s member of staff who had made the DoLs application.

The Assessor wrote: “Mrs. Beddows can be awake and open her eyes but she shows no
awareness of self or environment. There are no sustained purposeful or voluntary
behaviours. There is no comprehension or emotions and no purposeful or voluntary
behaviour. DB can open her eyes but there is no focus or tracking of objects or persons.”
He was of the opinion that she is now in a permanent vegetative state.
Before the pandemic Doreen’s Consultant neuropsychologist classed Doe as being in a
minimally conscious state. His Report states inter alia: “there was a differentiating response
to the instruction to open and close eyes for both right and left: there was a tracking
response and frequent consistent localising and focusing and tracking of people movement
around the room. The specific responses to stimuli are indicative that Mrs. B has the
potential to show positive signs across the MCS spectrum. Movements of the right eye have
been shown to be relatively consistent across assessment.”

30
The effect on Doreen because I had been prevented from visiting her each day and providing
stimulation was that she had gone from being minimally conscious to permanently
vegetative. From having a tracking response she had deteriorated to having no tracking. It
was obvious that Doreen was slipping further into atrophy as feared by her consultant.

The Deprivation of liberty application was rejected by the assessor who decided that
vegetative and similar states were pure disorders of the brain and not mental disorders within
the meaning of the Mental Capacity Act. Doreen did not have a mental disorder – she had a
disorder of the brain following an operation so she did not “qualify” for such an order and the
Doctor refused to issue one.He concluded that a DoLs could only be issued in regard of a
person with a mental disorder.

OCTOBER ‘20

We had an internet Team meeting with the Home,the local Council and the NHS’s lawyers,
to discuss the case and prepare for the next Court appearance. The Home’s assistant manager
said that Doe presented as she had always done but I said that was not what Dr Sood on
behalf of WBC’s DoLs authority. She said “Oh ,erm..Yes” .The Home were concerned about
daily visits so I suggested that we could start with twice per week for a trial period.The Home
said that other relatives would be upset but both the lawyers and the Council said that there
had to be separate visiting plans for each resident according to their needs. The Home said
that they were still awaiting advice from their insurance company. We also had a discussion
on who actually tells the Home to close when there is an infection. Everyone was surprised to
find that it was an infection control nurse at Cheshire and Wirral Partnership NHS Trust
(CWP) .

Our next Court appearance by telephone again, was on 7th October when all of the relevant
evidence was produced . The Home confirmed that their public liability insurance allowed
for visitors during covid if done according to the Government Guidance. They asked for a
further three weeks with which to come up with a risk assessment if visiting went ahead.
They asked if I would mind if Doe was moved to a room across the corridor next to the fire
door entrance, then I could come in without passing any other rooms. I agreed.

The following day I was allowed a half hour visit in the pod, my first since 3rd September.
Doe was awake and looked towards me through the glass but showed no sign of recognition.

On 14th October the Home phoned me to say that Doe had a bruised finger. I said maybe she
had been lying on it after being turned. Twenty minutes later they called again to say that
Doe was going to hospital because she had breathing problems and the ambulance men were
there and did I want to go with her in the ambulance. I got there in ten minutes. They brought
Doe down and the ambulance man said that they thought she had sepsis. He said he was
annoyed with the Home because they had no one to go with Doe and he did not think that this
infection had only just started. It appears she had dark orange urine a raging temperature and

31
low oxygen levels. They took Doe into the Red Zone in and e and I waited about two hours
whilst they looked after her. I was then called into the Red Zone and the Doctor spoke to me.
She had changed the catheter and taken a sample of the gunge in it. They had started
antibiotics and were giving her fluids. She had oxygen as well but was off it when I got to see
her. They gave Doe a chest x-ray and also x-rayed her finger. It was not just a bruise but
really swollen and discoloured but the doc said it was not broken. They want to know what
had caused the infection and took covid swabs. They will keep her in for 24 to 48 hours but I
will not be able to visit. They said that I should not really have been in the Red Zone but I
was there until eight o’clock when they took her to the ward .

The following day Doe had aspirated again and had a rigour .They were treating the bladder
infection but now say the infection is on her chest so they are changing the antibiotic and see
how that works out.A covid test proved negative but she has infection in her blood, chest and
bladder. She is on a drip of antibiotics. She occasionally needs oxygen. I was not allowed to
visit but a family support group arranged for me to see Doe through Skype. She looked
uncomfortable, with her head falling off the pillow and her face covered in dried saliva. She
had an oxygen tube in her nose. I could not make any contact with her.

After two weeks in hospital Doe still had sepsis in her urine but she was returned to the
Home with an nhs nurse going in daily to administer the antibiotics. The NHS nurse had
tried to put the canula in for the continuing antibiotics but could not get the needle in so they
were awaiting a doctor to come and have a try. I don’t know why they did not leave the
canula in from the hospital. Eventually they managed to place one in her heel.
When Doe first went into the hospital they had changed her catheter. She has a supra pubic
which goes through a stoma in her tum. It is held in place by a balloon. She had been
bypassing in hospital and continued to do so once returned to the Home. After two days back
in the Home they called me to say that the catheter inserted in hospital was put in incorrectly
and instead of the balloon floating on the bladder it was protruding through the vagina – that
was the reason she had been bypassing for two weeks. Why had this not been noticed before?
The Home did not want to change it themselves because of the bladder infection. I said it
was straight forward – just empty the balloon and pull the catheter back through the bladder
but they would not do it and called an ambulance. Later the Home called me and said she
wanted to assure me that everything was under control. I said that I did not know how no one
had noticed the balloon outside the body when they were washing her. They did not know. I
asked had she found out how the finger had been damaged and they did not know that
either..

At twelve the hospital called me and said did I want to sit with Doe. I went down to and e
and sat with her in a side ward. The Doctor whom I had saw when we were in the hospital
last week came to see me and said that the she had changed the catheter. She was the one who
put it in. She said that the balloon sometime comes out like that when the muscles force it
out. That has never happened in 21 years. The only time it had happened was when it was
changed in Arrowe Park and the doctor had not measured the tube and had pushed it through
the bladder and out again. We had not realised this until back at the Home when they came to
wash her. The doctor now said that they were not happy with the ECG reading. It was not
right and they could keep Doe in for observations and tests to find out the reason and decide
on a medication. However they did not advise it because of covid and the danger of further
infections. I agreed that we should let nature take its course. I returned home at four thirty
when the ambulance came to take her back and Doe went back to the Home. I called the
Home later and we discussed the ECG. The discharge letter mentions T lines as being the

32
problem. Although at the Hospital I had been allowed to sit in the covid area and also in a and e I
was not allowed to visit Doe in the Home.

On 30th October we had another meeting over internet with the lawyers and people from the
Home and Council. Visiting will be allowed for three one hour slots each week but the Home
is closed at moment due to an infection.

NOVEMBER ‘20

On 3rd November 2020 we had a Team meeting at nine thirty and agreed what had been
decided. We then had the final telephone Court appearance at ten thirty. It took just fifteen
minutes for the Judge to agree to sign off the agreement and he issued
the Final Order. It stated: It is in DB’s best interests to have non-socially distanced contact
with LB, whilst all other infection control measures are observed, in accordance with the
dynamic risk assessment of VC. IT IS ORDERED PURSUANT TO SECTION 16 OF
THE MENTAL CAPACITY ACT 2005 THAT:
1) The third respondent (The Home) shall ensure that the dynamic risk assessment
remains in accordance with the relevant legislation relating to care home visiting
during the Covid-19 pandemic.
2) The applicant (me) shall comply with the terms of the dynamic risk assessment as
they apply to him.
3) The first respondent (Cheshire West and Chester Council) shall continue to provide
local Director of Public Health guidance relating to visiting in care homes during the
Covid-19 pandemic to the third respondent in accordance with Government
Guidance, and offer assistance to the third respondent in relation to the dynamic risk
assessment if requested to do so.
Review
4) The third respondent (The Home) shall keep under review, on at least a monthly
basis, the dynamic risk assessment in relation to visiting between LB and DB.
5) If a change to the dynamic risk assessment is made which renders it more restrictive
on visiting arrangements between LB and DB, and that increase in restriction is not
related directly to revised legislation, local Director of Public Health Guidance or
Government Guidance regarding visiting in care homes, the third respondent (The
Home) shall inform the first (the Council) and second respondents (NHS CCG) of
this. They shall agree between them which public body will bring the matter before
the Court for a review. If there is no agreement between them, a joint application
shall be made.
The Home agreed to move my wife to a room adjacent to the fire escape door so that I could
access her room without passing through any other parts of the building. The whole
procedure had taken three months.
Having received the Court Order I emailed Infection Control to ascertain the position with
visiting. They did not reply but asked the Home to call me. I was told that the Home was
closed due to a covid outbreak. There is none upstairs but both residents and staff are infected
downstairs. The Home asked me to speak to CQC as they were doing an inspection over the
internet!

33
I called Vale Court several times asking if I could see Doreen on facetime but they said that
they were too busy with poorly people. On 15th November I was able to facetime her for five
minutes. She did not seem to recognise me at all. I then got a call
to say that Doe had tested positive for covid but did not appear to have any symptoms.

Four days later I called Vale Court who said that Doe was still not showing any symptoms.
The first ones are loss of taste and smell but you would not know if that had happened to
Doe. I asked what the doctor had said and it was they would treat each symptom as it
occurred. They promised to call me if there were any further developments.

I reminded them to check out the peg change which is due on 10th December. Last December
Doe had a new kind of peg inserted which lasts for twelve months but need two clinicians
from the hospital to change it. The Home said that the hospital dietitian cannot come in to the
Home yet and that Doe cannot be covid tested again for sixty days because she would still
test positive. It was now a month since the Court Order had been issued but I still had not
been able to visit Doe.

DECEMBER ‘20

Eventually on 2nd December, after five months of legal argument, I was finally allowed to
visit my wife for the first time since 3rd September’s fifteen minute visit in the pod. I went to
the Home for three and after a temperature check in reception I went round the back to the
fire escape door where they let me in and gave me ppe to wear. I went in my wife’s room to
hold her hand and comfort her for an hour. She looked at me quizzically with no sign of
recognition. She used to track my movement around the room with her eyes but she no longer
does this. I did some exercises with her hands and arms and brushed her hair which was in
knots. She had cuts on four fingers where someone had cut her nails too low. Her face had a
lot of dry skin hanging off it. Otherwise she seemed well but not a lot of contact. She was
probably wondering who I was. She has now moved to a room next to the fire escape which
has been decorated and all of her pictures hung on the walls. I stayed for an hour and left her
in her room. I found it strange and felt more like a visitor than the home from home it used to
be. I found that two hours was enough for the time being. The fire door became stuck so I
started to enter through the main door and be escorted in the lift and a long the corridor. I
visited a further eleven times during December, including Christmas Day, gradually
increasing visits from an hour to two hours. Over the month I located much of Doreen’s
equipment which was missing – her battery charger, hand protectors and the bag from her
chair for example. Doe was beginning to take more notice of me and become more of her old
self.

Then on 31st December the

Manager called me to say
that the Home is closed as
our area was entering
lockdown again and as we
are in Tier 4 Government
Guidance prevented
visiting inside the Home.
This third lockdown is
authorised until the end of
March 2021.

34
I sent an email to the Home detailing how I thought the rules still allowed some leeway and
asked them to take it up with infection control.

JANUARY ‘21

On 5th January they changed Doe’s peg which only has to be done annually. It should have
been done on 10th December ’20.There is a total lockdown but on 14th and 21st January I was
able to visit Doe in the pod for fifteen minutes. She was awake but I don’t think that she
could see me through the glass. Doreen had her first covid vaccination. Infection Control had
said no visiting inside is allowed. I told the Home that I would email Public Health England
to ask them whether Doe was an exceptional circumstance to allow visiting.

FEBRUARY ‘21

During February there were several exchanges of emails and telephone calls as I sought to
obtain copies of Doreen’s care plan notes as called for in the Court order. I wasn't even told
that she had the vaccination until I called myself to verify and then the person I spoke to was
not sure. No one called me to say the peg had been changed - ( How it went and did Doreen
react?) I have had no communication regarding her situation since 18th December.
The care plan states “Doreen's husband and he would like to be kept up to date with any
changes in regards to Doreen's health/condition” and “Doreens husband continues to
receive a daily phone call” but it wasn’t happening. When I got a copy of the care plan
during the Court discussions I could see that there were several entries that I should be kept
informed but this did not happen. For example It was only now that I found out that in July /
August last year Doe had Chloramphenicol eye drops and antibiotic Flucloxacillin for an
infected cyst .

I had one visit for fifteen minutes in the pod separated by glass and I delivered a dozen
(plastic) red roses and a card to Vale Court and handed them in to Kay for Doe on
Valentine’s Day.Doreen’s GP sent me a letter addressed “To whom it may concern” in which
he confirmed that Doreen’s situation was such that there may be a sudden crisis in her
condition thus complying with the NHS definition of end of life. On 12th February I sent this
to the Home asking for permission to visit as per Government Guidance as end of life visits.
Despite several follow up calls it was the end of February, when the Government announced
that visiting could resume, that the Home said that I could visit in March.

MARCH ‘21

Visiting re commenced during the first week of March.

I would visit on Monday, Wednesday and Friday
afternoons for an hour at a time. I would take a lateral
test at Home before each visit and a pcr test once per
week. I would gain access through the fire door at the
back of the Home, reaching Doreen’s room via the fire
escape stair well. When the fire door became wedged
closed I started to gain access through the main door
and be accompanied in and out via the lift

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APRIL ‘21

As time progressed I was allowed to use the pass code to gain access and make my way to
Doreen’s room via the lift on my own. The length of visits slowly increased as Doreen
became more used to me again and started to brighten in her demeanour. I also found it
strange to be staying for longer visits. During March the Government Guidance had
suggested the idea of each resident having an essential care giver who would be allowed
access at any time, for any length of time, whether there is a covid outbreak or not and be
involved in all aspects of care. An ECG would join the staff cohort for pcr weekly tests as
well as taking lateral flow tests regularly. I asked the Home to confirm me as an ECG .

MAY ‘21

I was still visiting for shorter periods but now on four days
instead of three. We spent some time in the garden when the
sun permitted. Our son and his wife visited for the first time
since Christmas 2019.

JUNE ’21 to NOVEMBER ‘21

The Home confirmed my appointment as an ECG and my visits were slowly increased until I
was going in every day. We were sitting out in the sunshine and enjoying ourselves more like
pre covid times. We had a review with the NHS Continuing Health Team who confirmed their
agreement to my total involvement in all aspects of Doreen’s medical and personal care. The
Home agreed.

DECEMBER ‘21
On Friday 10th December 2021
An agency nurse said that during the night Doe had passed a lot of blood and he had asked
the practice nurses to visit. There were similar episodes during the day. It then transpired that
the practice had sent a former Vale Court carer -unqualified – to call in. The agency nurse
was quite laid back about it saying it was only haemorrhoids and said he thought that the
carers were overly concerned. He must have passed this sentiment on to the representative
form the Practice who relayed it to the practice who then said it could wait until Monday. I
was unhappy with that. The Practice Nurse could not come again on the Monday but said

36
they will come tomorrow. The agency nurse who was on Friday said I told you it was ok (he
didn’t). The practice nurse did not come in on the Tuesday or the Wednesday. I asked the
nurse to insist that the GP visit. Eventually the practice nurse did visit herself, five days after
the original episode. Apparently what is happening with Doe is melena - the passage of
dark tarry stools containing decomposing blood that is usually an indication of bleeding in
the upper part of the digestive tract. The practice nurse said that there was little that could be
done in view of Doe’s condition. A further four days later, on 19th December at seven in the
morning I get a call from Vale Court to say that they have called the ambulance service
because Doe is struggling to breath, has a raging temperature and mottled skin. The one
eleven doctor calls in. Aggressive antibiotics are required as it appears to be sepsis. She needs
to go to Hospital. I followed the ambulance but could not go into a and e, only stay in the
waiting room. I waited from eleven until four o’clock with no one telling me anything.
Eventually I spoke to the receptionist who checked on the computer and said that Doe was
waiting to see other doctors but a bed had been reserved on ward 47.I went home and at
seven received a call from the hospital asking me for the settings for the pump which is used
to feed Doe. On Monday Doe was moved to ward 49 and then on Thursday moved again to
ward 42 as they are clearing 49 for covid patients. Doe has a blood transfusion as she has low
haemoglobin and antibiotics are continuing on a drip. She is quite weak. After two weeks in
hospital during which I had been allowed a one hour visit four times, they gave Doe a CT
scan. The next day, New Years Eve, I was called to the ward to see a doctor and ward
manager. They told me that the CT scan had showed an aggressive cancer in the bowel on the
left hand side. It had been there for a long time and was steadily closing the bowel off so that
she would not be able to open her bowels and her stomach would become distended. She
could not stand the length of time she would be under anaesthetic for an operation to remove
the bowel and a camera would likely cause even more damage than the cancer. She had
weeks maybe months left. She cannot go back to Vale Court at the moment because they have
a covid outbreak and have said that there must be a ten day break. The ward manager has said
that I can visit for an hour per day.

JANUARY 2022
Vale Court agreed that Doe could return despite their covid outbreak and I passed this on to
the ward on 2nd January. However she was moved to ward 41 the following day and due to a
mix up she was not returned to Vale Court until the 5th January. She was then isolated for 14
days but I could still visit her every day as normal. The discharge notes said that she was
returned for “conservative symptomatic management of the tumor with the family’s
agreement”. They had decided that they would not operate as Doreen had little chance of
recovering from such an operation. A week after returning to the Home I was praying for
Doreen when it came to me to query the hospital’s decision not to operate. I had a
conversation with the GP practice and told them that I would like them to ask the hospital to
operate on Doe in view of the fact that their choice to operate 22 years ago should mean that
they should at least try. Apparently the cancer is in the Sigmoid area which is lower down the
bowel and is where I had camera examination myself which was not too bad. Later in the
week the GP practice called to say that they would not do as I asked and said that I should
speak to the hospital myself. I called the Countess and got the email address to get a message
through to the consultant. On the 17th January the Lead Consultant Gastroenterology agreed
to meet me at the hospital. We had a half hour discussion.The problem is not that they can’t
operate but that it is doubtful that Doe could stand it and if she did would she survive during
recovery. Chemo is certainly out- they would not do that for her. She will discuss with the
surgeon about the possibility of inserting a stent to bypass the tumour. They cannot tell how
long before the tumour blocks off. When Doe vomits rather than digesting her feed will be

37
the first sign. The lady consultant was very understanding and helpful and assured me of her
help if I needed anything in the future. She later confirmed in a letter to the GP, that placing a
stent through the tube as I had suggested, would have the same probable outcome as an
operation, so was not viable.

Three or four days later I was told that the GP had stopped authorising Doreen’s enemas.
Apparently they had a patient with the same problem and the enema had ruptured the bowel.
I was not happy with that decision and said that I would email the consultant.She called me at
ten thirty the next morning to say that she would speak to the GP and tell them that she wants
the enemas to continue. Up until the end of January the enemas had good result with no
further melena. It has been a month since we found out about the cancer and Doe appears to
be just the same as always.

FEBRUARY 2022
Throughout February Doe had twice weekly enemas, all with good results and no melena.
She slept all of the time with only occasional opening of her eyes then going back to sleep.
She showed increasing facial signs of pain and received paracetamol to alleviate. I have made
an appointment at the dentist for 3rd March to ascertain if the pain could be associated with
her teeth rather than the cancer. I continued to visit her every day for at least six hours and
helped with her baths.

MARCH 2022
I took Doe to the dentist – the
two years. There is no apparent
giving her pain so the pain she is
of her cancer. She is awake a lot
been increase to 20 mls four
pain but as time goes on the signs
passed through her feeding tube –
first time she had been out for nearly
reason why her teeth should be
expressing must be from the effects
more now and her paracetamol has
hourly. Initially this alleviated the
of pain – particularly when fluids are
are more frequent.

APRIL 2022

Great grand daughter Evie visits for the first time

38
MAY – DECEMBER 2022
The enemas have generally worked with trauma only showing a few times over this period. The paracetamol
seems to have helped with the pain during the day but she continued to experience pain about five minutes after
the feed started.In late December started to give one co-codamol with half a dose of paracetamol just before
feed and this has worked for two nights on the run so is maybe the solution. Otherwise Doe appears to be
holding up well. To avoid constipation the cocodamol was changed to straight codeine with the paracetamol.

JANUARY – APRIL 2023

Doe has fallen into a more regular pattern of paracetamol every four hours and codeine prior to feed. She was
showing some pain in the afternoons so she now has codeine with the paracetamol at midday and at five. To
help further a dieticians rereview introduced setting up two bottles to run together, one with feed the other with
water, to dilute the feed within the feeding tube before it enters Doe’s tummy. This has reduced the pain still
further. Because of the ceasing of covid mask wearing Doe has had her first major chest infection since covid
began. She has had two courses of antibiotics. She had her covid booster in April. She is continuing with
enemas twice per week and there has been very little sign of blood for a long time. So much for the “matter of
weeks” prognosis given at the hospital sixteen months ago. The photo shows Doe on her birthday on 10th March
'23

MAY – OCTOBER 2023

It is now 22 months since Doe was declared as on end of life,given

only weeks to live! The pain relief appears to be working. She has
had further chest infections and two courses of anti biotics but,
apart from her distressed coughing bouts, she continues to prove
the doctors wrong again.

39