When the Unacceptable Becomes the Norm: Choosing a Care Home in the 21st Century

When the Unacceptable Becomes

the Norm:

Choosing a Care Home

in the 21st Century

Bill Lawrence

Copyright © 2017 Bill Lawrence

The moral right of the author has been asserted.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.

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Contents

Foreword

Chapter 1 Introduction

Section 1

Choosing a Care Home

Chapter 2 Our Own First Experience

Chapter 3 Guides to Choosing a Care Home

Chapter 4 Catering and Staffing Issues

Chapter 5 Unasked Questions and Beyond

Section 2

One Family’s Care Home Experience

Chapter 6 The Early Years

Chapter 7 The Middle Years

Chapter 8 The Final Years

Chapter 9 Safeguarding

Section 3

The Care Home Experience in the Media

Chapter 10 What the Media Said, 2011-2015

Chapter 11 Recommendations and Conclusions

Foreword

Some years ago a very dear cousin in New York, the multi-millionaire founder of a successful advertising agency, said to me that the hardest thing he had ever had to do was to place his mother in a care home for the last years of her life. In the fullness of time, I found those words to be only too true when I also had to place my mother into residential care. That was the start of years of struggle by my wife and I to keep her safe and well. She was in her mid nineties when she entered the home and over a hundred when she left it for the last time for her final hospitalisation. In this book I hope to use our long experience within the general context of the innumerable examples of the failings of care homes for the elderly in this country, as reported in the media in recent years, to offer practical guidance to anyone who finds themselves in the now commonplace situation of looking for a suitable care home for their loved one.

While at the home, my mother celebrated her one-hundredth birthday. For the many family and friends, who came from as far away as Australia and the USA, it was a wonderful occasion complete with a birthday card from the Queen and the presence of the local mayor; but she was also a statistic. The 2011 Census showed that she was one of 291,000 people aged sixty-five and over in England and Wales who were resident in care homes. More significantly still, she was one of 172,000 aged eighty-five and over. Scotland and Northern Ireland bring the UK totals to 320,000 and 190,000 respectively. The eighty-five-plus age group is the fastest growing in the UK, many of them living in residential and nursing homes. For the future, an article in the Mail Online on 11th May 2011 estimated that the number of care home places would need to rise by 82% by 2030.

Be that as it may, there can be no doubt that in recent years there has been ever increasing concern expressed in the media about the shortcomings of care homes for the elderly in the UK. The Daily Telegraph, for example, carried a story on 18th June 2011 headlined ‘100,000 elderly and disabled people in failing care homes’. The opening paragraphs of that report form the background to the story told in this book.

More than 100,000 elderly and disabled people are living in care homes that fail to meet basic minimum standards of quality or safety…

Nearly a quarter of adult care homes in England are currently failing to comply with at least one of the essential standards required by law…

The care home regulator, the Care Quality Commission (CQC), has disclosed that 4000 out of 18,000 homes have been judged ‘non-compliant’ on at least one of the sixteen new minimum standards. The number of residents living in these failing homes is believed to be at least 100,000.

There was nothing new about that story; three years earlier, on 5th May 2008, the Mail Online carried a story headlined ‘5,000 complaints a month over care home abuse fears’. It reported that the then Government care home inspection body, the Council for Social Care Inspection (CSCI), had received 1043 complaints in the six months to March 2008. It was estimated that local councils were receiving 60,000 such complaints every year.

The Daily Telegraph article quoted Michelle Mitchell, charity director of Age UK, who said ‘older people being placed at risk by poor quality homes not complying with standards is unacceptable’. That word ‘unacceptable’ will crop up a lot in this book. In the same article, Ros Altmann, then director general of Saga and later Baroness Altmann, minister of pensions, said it was ‘a disgrace’ and ‘this country does not treat elderly care seriously enough’. Little notice was taken and four years later, on 9th August 2015, The Observer commented on a scathing report by the chief inspector of adult social care in England which described the system as ‘broken’ and carers as ‘demoralised’. The regulator was receiving more than 150 allegations of abuse of the frail and elderly every day. Locally, the story was no different. In May 2014 the Bridport and Lyme Regis News reported that sixty-nine homes in Dorset had been told to improve by the CQC while on 21st November 2015 the Sunday Post quoted ‘official reports of elderly and frail people being mistreated’ in Scottish care homes more than doubling between 2011 and 2014.

There are 18,000 care homes in the UK. The aim of this book is to exemplify the systemic failings of residential care for the elderly through the experience of one family with one care home over six years, and with the various agencies which inspect, monitor and regulate care homes. We were able to keep my mother safe within a system that simply didn’t place ‘caring’ very high on its agenda. But what a colossal struggle it was, taking up an overwhelming proportion of our time, when we were both in our seventies, and an enormous expenditure of physical and mental effort; and this when the whole idea had been to turn to twenty-four hour residential care when my mother’s physical and mental deterioration meant that we were no longer able to look after her in her own home as we had for the previous twenty years.

Not even the most basic things could be taken for granted. We dealt with layer upon layer of resistance: a residential care home for the elderly which put standards of care nowhere, but instead revolved around saving money; a care home owner, the corporate culture of which couldn’t accept that it was anything other than perfect, and would lie and place the blame anywhere but on itself when anything went wrong; a local authority which commissioned most of the places in the home but which lost people in the system and was more concerned with avoiding blame, keeping in with care home providers and putting down anyone who went to it with a complaint; and, a national inspectorial system, which changed over time, but was always reluctant to listen to ordinary people with first-hand experience.

Nor did anything change between the events described in this book and the subsequent three years over which it was written. Thus, for example, on 14th October 2014 the Care Industry News website reported ‘Thirty-six per cent of abuse of vulnerable adult allegations happen in care homes’. This was based on local authority investigations in 2013/14 and involved 35,810 allegations. A month later, on 10th November 2014, the BBC News Wales website reported that the older people’s commissioner for Wales had said that ‘care home life was unacceptable’, that word again. She added ‘many people living in care homes have an unacceptable quality of life and quickly become institutionalised’. She described care homes as places of ‘irreversible decline’ where residents were unable to do things that mattered to them. Most damning, the report found that residents’ ‘personal identity and individuality rapidly diminishes and they have a lack of choice and control over their lives’.

These failures are not unique to the UK. On 19th November 2013 The New York Times carried an article entitled ‘A Watchful Eye in Nursing Homes’ which detailed abuse in homes from Oklahoma to New Mexico, from Texas to New York and from Ohio to Pennsylvania and New Jersey. A few months earlier, on 30th July, abc News covered a congressional report which was headed ‘Elderly Abused at 1 in 3 Nursing Homes’ in the USA. There had been over nine thousand instances of abuse in 5283 homes in two years. Problems included ‘untreated bedsores, inadequate medical care, malnutrition, preventable accidents, and inadequate sanitation and hygiene’, every one of them reported repeatedly in the British media. Also in the USA, the legal organisation Justia quoted a report by the National Center on Elder Abuse that one nursing home patient in twenty had suffered abuse. More specifically, the Star Tribune reported on 21st February 2013 that two deaths in a nursing home in Minneapolis had resulted from neglect, while in Ontario, Canada, CTV London reported that ‘abuse and neglect in long-term care homes (was) widespread’. There had been 1500 cases in northern Ontario alone over the previous four years.

Across the Channel, a French friend had to move his father from a home in Burgundy because of abuse and neglect, which included stealing from residents, to one nearer his own home in Paris so that he could keep a careful eye on him. Donna Leon’s book Quietly in Their Sleep revolves around financial abuses in Italian care homes. This happens in the UK too. BBC Devon on 16th December 2015 carried a story about a care home manager who had been jailed for stealing more than £25,000 from residents, while on 30th March 2016 the Mirror Online reported that the manager and deputy manager of a care home in Cheshire had misappropriated residents’ funds for their own purposes.

In Australia, on 27th September 2013, The Sydney Morning Herald reported that a care home nurse was being investigated by the Nursing and Midwifery Tribunal of New South Wales and the police for abusing elderly residents. Again in Sydney, The Sunday Telegraph reported in May 2010 an undercover investigation which described residents at two homes ‘living in hell’. The homes advertised ‘superior aged-care personal support and respect for the elderly’, but in fact residents were ‘being fed cold and inedible food, left sitting in urine and faeces and subjected to cruel and at times inhumane treatment from overworked and under-resourced carers (and) being mistreated and left to die inside sterile, cold and smelly aged-care facilities’. More recently, The Australian reported on 16th February 2015 that ‘residents… have been bashed, abused, starved and stripped of pain-relief morphine patches in a culture of neglect and concealment’ at a home in Brisbane. At a home at Tauranga, Consumer New Zealand reported in July 2013 two incidents relating to personal hygiene and misapplication of medication. Nearer to home, a recent report from the Irish Republic on the IrishHealth Pro website begins ‘Elder abuse is the hidden shame of Ireland’s caring industry’. There are scores of such stories to be found on the internet, all sounding so very familiar to British ears.

That is not to say that there are no good care homes, although I suspect from my own experience that they are all too few and more likely to be run by charities rather than commercial enterprises. All the evidence is that far too many homes are either poor or indifferent. I can only testify to what my wife and I experienced for ourselves, and what I found out through my own research. None of it is the subjective invective of malcontents and troublemakers, although that is how we were portrayed by my mother’s care home, its owners, the national inspectorial bodies and the local authority, at least until we had so persisted over weeks and months and years that they were forced to listen. Everything in this book relating to my mother’s care home is based on correspondence, minutes of meetings, our own photographic record, conversations with staff, other residents and their relatives, diaries which I kept whenever things seriously threatened my mother’s well-being, and notes which I made after any major incident. Everything relating to the care home sector in recent years is based on my own research and on the voluminous evidence to be found in the media and on the internet. One of the few positives in this story is the zeal shown by the media in exposing the shortcomings of care homes for the elderly. Their campaigns have been splendid even if those in authority seem to have done little about the problems which are so graphically revealed.

Chapter 1

Introduction

It is a rare privilege to still have your mother alive when you reach the age of seventy-five; that was my good fortune. My mother nearly reached 102, and for the last twenty-five years of her life my wife and I cared for her, and also for my father until his death at the age of ninety-one. She lived through both world wars and grew up in the East End of London in the difficult inter-war years. She raised two small children single-handed during the Second World War while my father was serving in the army. She worked hard after the war helping my father run his business and well deserved the reasonable comfort that brought them. By the time she reached her nineties she was suffering from numerous ailments but still enjoyed a good quality of life. Even after she was diagnosed with dementia, at the age of ninety-three, she was still able to communicate with other people; until the very end of her life many people meeting her for the first time had no idea that she suffered from dementia.

This book is about the last six years of her life, when it was necessary for her to be in a care home. This period turned out to be the most stressful my wife and I have ever endured. It certainly wasn’t meant to be like that, in fact the very opposite. This book is written as a guide and a warning to others who have to place an elderly loved one in residential care. Writing it was the suggestion of the American cousin, who I quoted in the first paragraph of this book. He was very fond of my mother and just couldn’t believe what we told him about how difficult it was to keep her safe in a care home. If the price of liberty is eternal vigilance, so too is the price of ensuring the safety and well-being of a loved one in a home. I was once told by a very experienced senior district nurse that every care home resident needs a powerful advocate if they are to survive. No truer words have ever been spoken. I had no real idea what he meant when he first said it, but I learnt the hard way once my mother was in a home.

This isn’t a tale of physical or mental abuse. In some ways it is easier to deal with such extremes. They are often picked up by the media, they are on everybody’s lips and action has to follow if only because of the blaze of publicity. Such homes may well be closed; if not, it is easy for people to avoid them like the plague. There may well be criminal charges and custodial sentences. At the very least the main culprits are likely to be dismissed or lose their professional registration. No one at my mother’s home was beaten or physically abused to my personal knowledge, although an appalling case of fatal neglect occurred during the time my mother was there which I knew nothing about until years later. A few staff did sometimes speak inappropriately to residents, but there was no regular pattern of verbal abuse. There was, though, a pattern of carelessness, refusal to follow guidelines and regulations, neglect, low standards, obsession with paperwork, mean-minded cost cutting, poor communication and, above all, absence of care.

I even wondered sometimes if I was trapped in the parallel universe of a science fiction novel or, perhaps, Alice’s Wonderland. My mother’s care home was a world in which nothing quite happened as it did outside. In which, for example, letters and emails were neither acknowledged nor answered; in which people who were not present at something knew far more about it than you did, even though you were there; in which investigators of complaints never interviewed the people involved; in which the staff at the home could contradict themselves over and over again, or assure you that black was white, without the slightest embarrassment; in which any shortcoming of the home was always your fault, never theirs; in which a concerned relative must never criticise any malpractice because that might make staff nervous; and, in which senior management could assure you to your face that something was true even though you had written evidence of them saying the exact opposite.

All this was compounded by managers at the home treating residents’ relatives as at best a nuisance or, in our case, as enemies to be lied to and misled if ever we raised a concern. The culture was one of saving money at all costs and at the expense of elderly people who were often using their life savings to pay for their residence, usually having to sell the homes they had worked hard for all their lives, as my mother had to. Food standards were poor to start with and became steadily worse. Staff were paid minimum wages, so that they often stayed as little time as possible and turnover was high. There were always staff shortages, which became worse over time. Staff/resident ratios deteriorated. Staff numbers were reduced drastically. Those staff who remained, often had to work a sixty-hour week to make up for high turnover and shortages, even though it could only lead to tired people making mistakes. They also had to work such hours to make any kind of living wage. Most carers tried their hardest, and did their best, but they were too few. Where we did see naturally caring dispositions, and in the circumstances that was surprisingly often, they were all too frequently overwhelmed by overwork and bullying by managers concerned to reduce costs. We also observed staff who were almost totally idle, imposing greater work loads on those who were willing.

We experienced all this for six years. What was unique was how much time we spent in the home. For the first three years we visited my mother every day. When we later moved, some distance further away, we had to reduce that to every other day, though we visited more often when necessary. This meant that we visited over 1500 times, never for less than an hour, most often for two or three hours, and sometimes for much longer. We spent three to four thousand hours there. Allowing for sleep time that is six to eight months. No other outsider spent even a fraction of that time there and it provided us with a unique insight into what happened on a daily basis. An external senior manager responsible for the home visited one day a month; it would have taken over forty years to spend as much time at the home as we did in less than six.

When things were particularly difficult I kept a diary and took photographs. We got to know other residents, and to observe how they were treated. We also got to know staff; sisters, nurses and carers, cleaners and laundry staff, activities staff, office staff, maintenance staff, gardeners and staff in the kitchen. All talked to us freely. We had enormous sympathy for the difficulties they faced. This book is a distillation of that experience. At the cost of immense stress, we managed to ensure that mostly my mother’s care was acceptable, but with some notable exceptions. Most residents had few, if any, visitors. They came for an hour and had neither occasion nor opportunity to see what was really going on. Visitors usually sat in the main lounge and had a cup of tea with a resident, typically at the weekend. They were discouraged from coming at meal times, were never there when residents were got ready in the morning, and saw little of the life of the home. We, on the other hand, spent most of our time with my mother in her room and were there at all times of the day. Without a devoted advocate, residents will become victims of poor practice and neglect, sometimes benign and sometimes not. We saw plenty of neglect and tried our hardest to ensure my mother did not suffer from it. Some of the poor practice we observed did endanger the well-being of residents. We never personally saw the worst instances of what can happen, but what we did see showed us just how easily it could occur.

Very often when we told people about what we had seen at the home, they expressed disbelief or amazement. ‘But what about the government inspectors?’ people would ask and I would answer: ‘Just remember Baby P, Winterbourne, Mid Staffordshire Hospital and the Old Deanery nursing home.’ We dealt with both the CSCI and its successor the CQC. The first made as many excuses for the home as the home made for itself; the second refused even to talk to us; they didn’t deal with complaints from individuals. When an inspector did visit the home, the inspection might consist of one person spending from 8 a.m. to 4.30 p.m. in a home with over a hundred residents in several units. Very little was inspected other than paperwork. To my knowledge no inspector ever spoke to a relative; they certainly didn’t speak to us, and we had complaints galore on file. Then, at the very last, we turned to the local authority, which had totally neglected its duty of care to my mother for years, only to find that they had lost all record of her. We talked to social workers more concerned to find excuses for the home’s shortcomings than to investigate them, and senior adult social care staff who ignored a damning portfolio of photographic evidence.

This book is a warning of what can happen to your loved one if you take what a care home says about itself at face value. Buildings may resemble four-star hotels. Managers can sound caring and concerned. Flowers in the lobby and pictures on the walls do not constitute a caring environment. Websites can paint a glowing picture and walls can be hung with framed examples of unexceptional corporate mission statements. In our experience all these may conceal a toxic reality. Over the years we saw many letters and cards posted on the home’s notice boards, praising the home for what it had done for the writer’s loved one. Invariably, they were from people who rarely actually visited the home; products of a guilty conscience, perhaps. Let me repeat; the price of reasonable treatment for your loved one in a care home is eternal vigilance and a readiness to complain whenever necessary. Nothing less will do.

Dealing with any organisation at the sharp end day in and day out for years provides an insight into its culture which no management consultant, however expensive their hourly rate, will ever achieve. Not the least of my disappointments derived from the fact that neither the home nor its owners took any notice of observations and suggestions from the people who experienced problems and shortcomings at first hand. Might one suspect that they would have been much readier to listen to a consultant who cost tens of thousands of pounds?

This book is divided into three sections. The first describes how badly prepared I was to choose a residential care home for my mother and what my wife and I came to realise were the things we should have looked for in the first instance. Against the background of the many guides to choosing a care home, I explore their limitations and offer advice on what to really look out for, based both on our own experience and on analysis of the numerous recent media reports of the shortcomings of care homes for the elderly. The second section describes our own experience in detail. Because there was never a time when we were not under pressure, the second section is largely written as a continuous narrative. There was