Does the number of people who have a medical condition or a disability dictate the size of charities that support them? 2
Executive summary
Research for this report, A Healthy Audience, looks at the relationship between the number of people with a particular medical condition or disability and the size of the largest charity supporting those affected. Here are the main findings from the report.
Some conditions have millions of sufferers 1 . There are 34 million people with high cholesterol, 17 million with irritable bowel syndrome (IBS) or other digestive conditions and 16 million with high blood pressure to name but a few of those with high numbers. Indeed, the report identifies 15 conditions with over five million sufferers.
Some conditions have just a handful of sufferers. At the other end of the scale, there are many conditions with just a few thousand sufferers. It is estimated that 2,500 people live with Rett Syndrome and 5,000 with motor neurone disease. There are many more conditions that our study does not include.
The size of charities supporting the conditions varies enormously. The smallest charity in our study had a turnover of 316,000 and the largest a turnover of nearly 500 million; a 1000-fold difference. More interesting (and saddening) is that two of the three most prevalent conditions (back pain and IBS) had two of the smallest charities, National Back Pain Association and CORE, in our study. The third smallest was the Migraine Trust, tasked with supporting eight million sufferers.
There is no simple relationship between numbers of sufferers and size of charity. Any charity that hoped that sheer numbers of people with a condition would guarantee them an income will be disappointed when they see the results. There is no simple linear relationship between the two; more people does not equal more money. There is a non-linear relationship showing that conditions with an intermediate prevalence do best. This is a sort of Goldilocks relationship; those with not too many and not too few tend to do best financially.
Income per person with a condition. So we did the maths and worked out the income per person for each condition in our study. The differences are eye-watering, truly eye-watering. The lowest income per person was 2p and the highest was 2,543; a 127,000-fold difference. The causes raising the most per person living with the condition are motor neurone disease, cystic fibrosis and cancer in children and young people. At the other end of the scale, conditions like back pain and IBS raise very little per person.
Explaining the differences in income per person. We cant explain all the differences in our figures. There are some patterns that we can tease out: Cancer has an emotional pulling power all of its own. People support cancer charities and are moved by cancer in a way unlike any other condition Children and young people move people as well. Deaf children do better than deaf adults. So children with cancer combine two very powerful emotional forces.
1 We know sufferer is not an ideal term, but it serves as a useful shorthand 3
We can explain who does well more easily than who does less well. The economic arguments of the impact of back pain, IBS or migraines are compelling, as the human cost is strong. However, these conditions are often invisible. The reason these charities fare less well financially is perhaps that they have millions of sufferers, but not many people die.
Is the number of people who die from a condition important then? Intuitively, it would seem that the number of people who die from a condition must be important. But things arent that simple. We found no significant correlation between mortality rate and income per person. So while cancers tend to have a high mortality rate, children and young people with cancer have a better survival rate than many other conditions. It may be the perception that people may die, rather than the reality. And of course, for many of these conditions nobody dies at all, but the income per person still varies enormously.
What else might explain our findings? Levels of income from government or government-funded research or the standards of treatment from the NHS might also explain our findings, but we have not been able to research these variables.
Six things charities should do to maximise support. We identify six actions for charities supporting people with a particular medical condition:
Identify their case for support why they need peoples help? Identify key audiences is income likely to come from sufferers, their families or the wider public? Work out the mechanisms for support the way that somebody supports a charity should tie in with our first two points Copying other charities is often a good way to test new ideas about what works and what doesnt - though jumping on the bandwagon may not be Raise your profile - if nobody hears anything about a condition, its not surprising if it raises little money. Great comms is the midwife of great fundraising Be ambitious - trustees and staff need to be hungry for growth and change. Without that, nothing is possible
It would be easy to look at some of the data from our research and become despondent about how little a charity raises for a cause. We see it as the opposite. There is little that is pre-determined about the size of charities. There are those with low and high numbers of sufferers that do well. There are those with low and high mortality rates doing well.
The potential for charities that support medical conditions or disabilities to do more and do better is huge, and the role models they have to learn from are numerous.
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Section 1: Introduction
A frequent cry from medical and disability charities is our problem is that not many people suffer from our condition. 2 This worry reflects the belief that the fewer people affected by a condition, the lower the income of its relevant charities. In this report we will investigate the relationship between numbers and income and attempt to determine whether low prevalence of a condition is a valid reason for a charity to be condemned to be small in size.
In other words, does the number of people living with a particular condition determine the size of a charity that tackles that condition? It makes logical sense to agree with this statement. The argument is that the more prevalent an illness is, the bigger the charity should be, since higher prevalence means that more people are touched by the condition, and so more people will be aware of the condition and more people will be willing to donate, and to raise money and awareness. Size, the hypothesis says, is a precursor to fundraising success. Our goal is to test that hypothesis.
How life-threatening or serious a disease is may also be worth considering. Are charities concerning conditions with a high mortality rate more likely to raise greater amounts than those focused on less serious conditions? That is, is the mortality rate a determining factor in charity success, alongside simple prevalence and the income raised per person with the condition?
In order to investigate the connection between the prevalence of a health condition and the size of a related charity, we have chosen just under 50 health conditions to examine in detail. This list includes the majority of the more serious and prevalent health problems, ranging from shorter-term illnesses such as meningitis, to long-term conditions like sight loss. Cancer is included as all cancers, alongside separate categories for the more prevalent individual cancers such as prostate cancer, lung cancer and breast cancer. We have also included childrens cancer and young peoples cancer since the associated charities are prominent in the sector. For a more detailed discussion of the data and its sources, see the appendix.
2 This report will use the term condition inclusively, to refer to any medical illness or disability. 5
Section 2: What is the relationship between charity size and the prevalence of a medical condition?
First lets take a look at the raw data we have obtained to see whether or not there is a link between the prevalence of a condition and the size of the charity that deals with the condition. To establish the prevalence of each condition we have obtained figures from a range of sources. For full details of these sources and discussion of the types of data, see the appendix below.
Table 1 shows the prevalence figures for each condition. For the vast majority of conditions we have found estimates of the number of people currently living with that condition, however for a small number of conditions (shown in italics), we have had to include the number of new cases each year (the incidence).
The most common condition we have included is high cholesterol, which is estimated to affect two thirds of the adult UK population, followed by Irritable Bowel Syndrome (IBS) and back pain, both estimated to affect around a third of UK adults. High blood pressure, mental health problems and obesity follow not far behind. The rarest conditions we have included here are cancer among children and young people, though it should be noted that these figures are for the number of new cases diagnosed each year, rather than the total numbers of children and young people living with cancer. Just 2,500 people are estimated to live with Rett syndrome, appearing third from the bottom.
Table 1: Prevalence figures for each condition
Condition Number Condition Number High cholesterol 34,000,000 STIs 482,696 Irritable Bowel Syndrome (IBS) 17,000,000 Deafblindness 250,000 Back pain 17,000,000 M.E. 250,000 High blood pressure 16,000,000 Stroke 152,000 Mental health problems 12,750,000 Parkinson's 127,000 Obesity 12,750,000 Problematic births 123,800 Old age 10,500,000 Crohn's 115,000 Raynaud's syndrome 10,000,000 Multiple Sclerosis 100,000 Hearing loss 10,000,000 HIV/AIDS 96,000 Arthritis 10,000,000 Muscular dystrophy 70,000 Migraine 8,000,000 Breast cancer 50,285 Skin disease and cancer 8,000,000 Deafness in children 45,000 Asthma 5,400,000 Lung cancer 43,463 Diabetes 3,750,000 Prostate cancer 41,736 Lung conditions 3,000,000 Blood cancer 28,345 Coronary heart disease 2,300,000 Cancer among children and young people: 0-24 26,548 Cancer 2,000,000 Gynaecological cancers 19,630 6
Sight loss 2,000,000 Teenager cancer: 15-24 16,612 Eating disorders 1,600,000 Brain tumour 9,156 Learning disability 1,500,000 Cystic fibrosis 9,000 Dementia 800,000 Motor neurone disease 5,000 Autism 700,000 Meningitis 3,200 Epilepsy 500,000 Rett syndrome 2,500 Glaucoma 500,000 Those in italics are new cases per year rather than number living with the condition; see appendix for further information.
For each health condition, we have collected data on the leading charity (defined in terms of total income) working in that area. See the appendix below for further discussion on this decision, as well as the data source.
For a small number of charities it was not straightforward to pick a single condition, whilst there is inevitably also some overlap at times. For instance, the British Heart Foundation (BHF) is concerned with cardiovascular disease, which includes all diseases of the heart and circulation including coronary heart disease (angina and heart attack), heart failure, congenital heart disease and stroke, whilst it also covers conditions such as obesity and high cholesterol which increase the risk of heart disease. Therefore, the BHF not only has overlap with the Stroke Association, but it is also difficult to know what prevalence figures best to use, particularly as they vary greatly. Two thirds of UK adults are estimated to have high cholesterol and a quarter to be obese, whilst just 2.3m people are estimated to suffer from coronary heart disease. Moreover, there is inevitable considerable overlap between these groups.
Meanwhile, Core (formerly the Digestive Diseases Foundation) is concerned with gut and liver disease. We have selected Irritable Bowel Syndrome (IBS) to represent their work, since it is the most prevalent digestive disorders condition that cannot be self managed (more prevalent problems e.g. indigestion, reflux arent considered as illnesses in their own right).
In terms of overlap, it is important to note that cancer is included as an aggregate as well as some of the most common types of cancer. For the sake of our analysis, we will assume that those giving to Cancer Research UK (the leading charity working on cancer) have made a decision to support everyone with cancer rather than an individual type of cancer.
Table 2 ranks these charities in order of their total income, whilst also showing the proportion of their total income which is voluntary, and the associated condition.
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Table 2: Income raised by each charity, ranked by total income
Charity Total income () Total voluntary income () Proportion of income that is voluntary 3
Selected condition Cancer Research UK 492,627,000 350,080,000 71% Cancer The British Heart Foundation 249,893,000 92,610,000 37% Heart conditions, incl. high cholesterol, obesity Mencap 200,597,000 19,080,000 10% Learning disability Age UK 167,655,000 50,050,000 30% Old age RNIB 111,598,000 64,450,000 58% Sight loss National Autistic Society 90,488,000 7,960,000 9% Autism Sense 78,354,387 11,100,000 14% Deafblindness Alzheimer's Society 71,008,000 41,120,000 58% Dementia Arthritis Research UK 40,224,000 23,720,000 59% Arthritis Action on Hearing Loss 37,533,000 12,130,000 32% Hearing loss Anthony Nolan Trust 31,910,436 5,970,000 19% Blood cancer The Stroke Association 30,587,000 16,660,000 54% Stroke MIND 29,899,000 790,000 3% Mental health Multiple Sclerosis Society 28,919,000 23,430,000 81% Multiple Sclerosis Diabetes UK 27,834,000 21,790,000 78% Diabetes Prostate Cancer UK 23,330,000 23,170,000 99% Prostate cancer Parkinson's UK 21,923,000 18,860,000 86% Parkinson's CLIC Sargent 21,240,258 18,180,000 86% Cancer among children and young people Terrence Higgins Trust 20,343,000 4,940,000 24% HIV/AIDS National Deaf Children's Society 20,009,140 18,320,000 92% Deafness in children Breakthrough Breast Cancer 18,077,000 14,010,000 78% Breast cancer The National Society for Epilepsy 17,081,000 2,780,000 16% Epilepsy Brook Advisory 15,271,603 1,480,000 10% Sexual health Teenage Cancer Trust 12,998,788 10,540,000 81% Teenage cancer Motor Neurone Disease Association 12,715,265 11,290,000 89% Motor neurone disease Cystic Fibrosis Trust 10,426,000 10,120,000 97% Cystic fibrosis Asthma UK 7,519,000 7,080,000 94% Asthma British Lung Foundation 6,375,679 1,960,000 31% Lung conditions Muscular Dystrophy Campaign 6,306,000 5,810,000 92% Muscular dystrophy Roy Castle Lung Cancer Foundation 5,227,741 1,490,000 29% Lung cancer
3 Using data from Charity Financials 8
The Brain Tumour Charity 4,933,807 3,100,000 66% Brain tumour Tommy's 4,066,203 2,570,000 63% Problematic births Meningitis Trust 3,196,946 2,210,000 69% Meningitis Crohn's and Colitis UK 2,770,510 1,120,000 40% Crohn's The Eve Appeal (Gynaecology Cancer Research Fund) 1,706,000 1,660,000 97% Gynaecological cancers B-eat 1,112,578 400,000 36% Eating disorders British Skin Foundation 1,102,128 940,000 85% Skin disease and cancer International Glaucoma Association 923,143 784,400 85% Glaucoma Action for M.E. 689,333 536,900 78% M.E. Raynaud's and Scleroderma Association Trust 512,695 355,200 69% Raynaud's syndrome Rett Syndrome Research Trust UK 509,351 253,500 50% Rett syndrome The Migraine Trust 497,752 420,831 85% Migraine National Back Pain Association 496,521 183,617 37% Back pain Core 316,290 201,697 64% IBS
Is there a correlation between income and prevalence?
A quick glance at the figures suggests that there is no obvious relationship between income and prevalence. The conditions affecting the most people are represented by both high income and low income charities (from BHF to the National Back Pain Association and Core), whilst charities working on conditions with the lowest levels of prevalence also have a range of income levels (for instance CLIC Sargent has an income of 21m, whilst Rett Syndrome Research Trust UK receives just 509,000).
To establish whether there is a statistically significant correlation between the prevalence of each condition and the total income of the corresponding leading charity, we conducted statistical tests on the data. Since we have included two different types of figures for prevalence, we ran these tests including all conditions, and again excluding the 11 conditions for which we only had incidence figures. The results were remarkably robust, with no changes after dropping these 11. 4
4 Likewise, no difference was found whether BHF was included with prevalence figures for high cholesterol or coronary heart disease as its representative condition. 9
Chart 1: the relationship between prevalence and total charity income
Chart 1 shows the relationship between charity income and prevalence. To make this visually easier to present (given the extreme diversity in income, as the biggest charity CRUK is over 1,500 times bigger than the smallest charity Core), both prevalence and total income are shown in logarithms. The dotted lines with purple labels provide benchmark values for both axes (vertical for prevalence, horizontal for income).
We found that there is no statistically significant linear relationship between the prevalence and the size of the leading charity working in that area. The blue line is the linear regression line which, by its flatness, indicates the lack of a relationship. Finding this, we investigated the possibility of a non-linear relationship (by running a non-linear regression) and noticed a hump shape in the data shown by the red line. It appears that, on average, charities working on conditions with an intermediate prevalence receive more income than those working on conditions with extremely low or high prevalence. Although not particularly strong, this relationship is statistically significant (at the 5% level for the sample of prevalence only, r- squared = 0.14; and at the 10% level for the full sample; r-squared = 0.08).
We also investigated (using multiple regression) whether the inclusion of mortality rates changed the relationship we detected in any way, and found no substantive difference. This pre-empts the lack of a statistically significant relationship between mortality rates and income discussed below. x-axis: Prevalence (in logarithms)
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Section 3: What is the charity income per person?
Using the figures for total income of the leading charities working on particular conditions and for the prevalence of each condition, we can calculate an estimate of how much money each charity raises per individual with that condition. This shows us the fascinating results of table 3, revealing the richest and poorest per capita illnesses and disabilities in the UK charity world.
The results show a huge variation in the income raised per person across the charities examined. At the top of the table, the leading childrens cancer charity raises over 13,000 per child diagnosed with cancer each year, whilst the leading charities for IBS and back pain are raising just 2p and 3p per person with the condition.
Table 3: Total income raised by the leading charity working on each condition per person with condition
Leading charity Selected condition Total income per person with condition Total income Prevalence Motor Neurone Disease Association Motor neurone disease 2,543.05 12,715,265 5,000 Cystic Fibrosis Trust Cystic fibrosis 1,158.44 10,426,000 9,000 Anthony Nolan Trust Blood cancer 1,125.79 31,910,436 28,345 Meningitis Trust Meningitis 999.05 3,196,946 3,200 CLIC Sargent Children and young people with cancer 800.07 21,240,258 26,548
Teenage Cancer Trust Teenage cancer 782.49 12,998,788 16,612 Prostate Cancer UK Prostate cancer 558.99 23,330,000 41,736 The Brain Tumour Charity Brain tumour 538.86 4,933,807 9,156 National Deaf Children's Society Deafness in children 444.65 20,009,140 45,000 Breakthrough Breast Cancer Breast cancer 359.49 18,077,000 50,285 Sense Deafblindness 313.42 78,354,387 250,000 Multiple Sclerosis Society Multiple Sclerosis 289.19 28,919,000 100,000 Cancer Research UK Cancer 246.31 492,627,000 2,000,000 Terrence Higgins Trust HIV/AIDS 211.91 20,343,000 96,000 Rett Syndrome Research Trust UK Rett syndrome 203.74 509,351 2,500 Parkinson's UK Parkinson's 172.62 21,923,000 127,000 Mencap Learning disability 133.73 200,597,000 1,500,000 National Autistic Society Autism 129.27 90,488,000 700,000 Roy Castle Lung Cancer Lung cancer 120.28 5,227,741 43,463 11
Foundation The British Heart Foundation Coronary heart disease 108.65 249,893,000 2,300,000 Muscular Dystrophy Campaign Muscular dystrophy 90.09 6,306,000 70,000 Alzheimer's Society Dementia 88.76 71,008,000 800,000 The Eve Appeal Gynaecological cancers 86.91 1,706,000 19,630 Royal National Institute for the Blind Sight loss 55.80 111,598,000 2,000,000 The National Society for Epilepsy Epilepsy 34.16 17,081,000 500,000 Tommy's Problematic births 32.84 4,066,203 123,800 Brook Advisory Sexual health 31.64 15,271,603 482,696 The Stroke Association Stroke 27.81 30,587,000 1,100,000 Crohn's and Colitis UK Crohn's 24.09 2,770,510 115,000 Age UK Old age 15.97 167,655,000 10,500,000 Diabetes UK Diabetes 7.42 27,834,000 3,750,000 The British Heart Foundation High cholesterol 7.35 249,893,000 34,000,000 Arthritis Research UK Arthritis 4.02 40,224,000 10,000,000 Action on Hearing Loss Hearing loss 3.75 37,533,000 10,000,000 Action for M.E. M.E. 2.76 689,333 250,000 MIND Mental health 2.35 29,899,000 12,750,000 British Lung Foundation Lung conditions 2.13 6,375,679 3,000,000 International Glaucoma Association Glaucoma 1.85 923,143 500,000 Asthma UK Asthma 1.39 7,519,000 5,400,000 B-eat Eating disorders 0.70 1,112,578 1,600,000 British Skin Foundation Skin disease and cancer 0.14 1,102,128 8,000,000 The Migraine Trust Migraine 0.06 497,752 8,000,000 Raynaud's and Scleroderma Association Trust Raynaud's syndrome 0.05 512,695 10,000,000 National Back Pain Association Back pain 0.03 496,521 17,000,000 Core IBS 0.02 316,290 17,000,000 Those in italics relate to income raised per new case diagnosed each year, rather than per person living with the condition
It is true that for each charity this figure will represent research, care or treatment in different proportions; Cancer Research UKs income per person will be more for the amounts of money spent towards research for the treatment of future sufferers, whilst the figure for Brook Advisory will more likely indicate the amount of money that is spent on direct care for patients in sexual health clinics.
It is also important to recognise that the amount raised per person is likely to be higher for conditions for which we have only incidence figures (estimating the 12
number of new cases a year) compare to conditions for which there are estimates of the total number of people living with the condition.
Table 4: Total income raised per person, categorised by income band
Total income raised per person with condition All conditions Conditions with incidence figures Over 1,000 3 1 100 - 999.99 18 5 10 - 99.99 10 3 1 - 9.99 9 0 Under 99p 6 0
Given the differences, it is perhaps more appropriate to consider the charities for which we have only incidence figures separately, and compare like with like. Table 5 shows income per person categorised by type of prevalence data.
Table 5: Total income raised per person, categorised by type of prevalence data
Total income raised per person living with condition Total income raised per person diagnosed with condition each year Leading charity Total income per person with condition Leading charity Total income per person with condition Leading charity Total income per person with condition Motor Neurone Disease Association 2,543.05 The Stroke Association 27.81 Anthony Nolan Trust 1,125.79 Cystic Fibrosis Trust 1,158.44 Crohn's and Colitis UK 24.09 Meningitis Trust 999.05 CLIC Sargent 800.07 Age UK 15.97 Prostate Cancer UK 558.99 Teenage Cancer Trust 782.49 Diabetes UK 7.42 The Brain Tumour Charity 538.86 National Deaf Children's Society 444.65 The British Heart Foundation (high cholesterol) 7.35 Breakthrough Breast Cancer 359.49 Sense 313.42 Arthritis Research UK 4.02 Roy Castle Lung Cancer Foundation 120.28 Multiple Sclerosis Society 289.19 Action on Hearing Loss 3.75 The Eve Appeal 86.91 Cancer Research UK 246.31 Action for M.E. 2.76 Tommy's 32.84 Terrence Higgins Trust 211.91 MIND 2.35 Brook Advisory 31.64 Rett Syndrome Research Trust UK 203.74 British Lung Foundation 2.13
Parkinson's UK 172.62 International Glaucoma Association 1.85
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Mencap 133.73 Asthma UK 1.39
National Autistic Society 129.27 B-eat 0.70
The British Heart Foundation (coronary heart disease) 108.65 British Skin Foundation 0.14
Muscular Dystrophy Campaign 90.09 The Migraine Trust 0.06
Alzheimers Society 88.76 Raynaud's and Scleroderma Association Trust 0.05 Royal National Institute for the Blind 55.80 National Back Pain Association 0.03 The National Society for Epilepsy 34.16 Core 0.02
Looking at the left side of Table 5, the top four charities, each raising over 500 per person living with the condition, are concerned with motor neurone disease, cystic fibrosis and cancer among children and young people. These are followed by NDCS, Sense, the Multiple Sclerosis Society and CRUK. On the other side of the table, which contains those conditions for which we have only incidence figures, the Anthony Nolan Trust and Meningitis Trust are at the top of the chart, both raising close to 1000 per person.
Why does the income per person differ so much?
The comparatively high figures raised by CLIC Sargent and the Teenage Cancer Trust seem likely to, at least partly, reflect the emotional pulling power exerted on the public by the combination of children and cancer. Indeed, a high proportion of CLIC Sargent and the Teenage Cancer Trusts income is voluntary: 86% and 81% respectively. Similarly the National Deaf Childrens Society (NDCS) is the next highest (raising 445 per child) and 92% of its total income is voluntary.
A direct comparison between Action on Hearing Loss and NDCS indicates a strong preference for donations towards young peoples charities, with 445 raised per deaf child compared to 3.75 per person with hearing loss. It is possible that it will be more expensive to support deaf children, since they will need greater levels of support for school and education, but this factor perhaps does not explain the 441 difference.
All credit to all charities which are able to raise substantial sums for those they exist to help and nothing should take away from their success in doing so. Every condition considered here is of course deserving of support from donors and stakeholders, since all cause discomfort, physical and emotional trauma, and in many cases death.
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Perhaps the really interesting and important question is not why do some charities do so well, but why do some do so poorly in terms of raising income per person with the condition?
Examining the lower end of the per capita scale, why is back pain so low on the list, given that it can cause chronic levels of pain and even disability? Indeed, back pain is one of the most costly conditions for which an economic analysis has been carried out in the UK, say Maniadakis and Gray in their report for The economic burden of back pain in the UK. 5 They affirm that this finding concurs with reports on back pain from other countries too. Back pain may suffer in the charity sector for lacking the emotional pulling power that other conditions have. Its image as a mundane condition may be partly to blame for its lack of better funding. It may also reflect low levels of awareness of the National Back Pain Association compared to other health charities, and perhaps the fact that people suffering from back pain are unlikely to even consider that there might be a charity working in this area that they could donate to.
Like back pain, irritable bowel syndrome (IBS) is estimated to affect roughly one in three of UK adults. However, Core, the charity for digestive system disorders, is raising just 2p per person living with IBS. The BHF deals with a similar variety and range of conditions to Core: the BHF treats heart problems like high cholesterol, coronary heart disease or heart failure, and Core is concerned with digestive problems ranging from constipation and gallstones to liver and stomach cancer. As discussed above, deciding which condition best represents BHFs work was difficult, however even if we take the condition with the highest prevalence, BHF raises 7 per person with high cholesterol, nearly 400 times as much as Core raises per person with IBS. Yet high cholesterol affects two thirds of British adults, twice as many as are affected by IBS.
It is likely that Core, like the National Back Pain Association, also suffers from the low emotional pulling potency of its condition. The idea of supporting a digestive system disorder charity that is concerned with diarrhoea and indigestion might not be so easy to stomach. Even though many digestive system disorders are not life- threatening, Core asserts that one in eight deaths in the UK is linked to diseases of the gut, liver and pancreas. It is important to value the secondary causes of death as well as the primary ones, in order to significantly reduce mortality rates.
The Migraine Trust has little money at its disposal per sufferer (6p) so it is worth asking whether sufferers of migraine might deserve more attention and support. According to a report by Shapiro and Goadsby, migraine is the least publicly funded of all neurological illnesses relative to its economic impact. 6 An estimated 25 million days are lost from work or school because of migraine. 7 There is currently no cure for the condition, and recommended treatment is often only to take painkillers, or other medicines which lesson the intensity of symptoms rather than treat the causes. Perhaps more money injected into migraine charities could help with research for treatment, and provide more care for those who are worst affected.
5 Maniadakis N, Gray A., The economic burden of back pain in the UK, Global Health Outcomes 2000 Jan;84(1):95-103. 6 http://www.migrainetrust.org/key-statistics 7 http://www.migrainetrust.org/key-statistics 15
Migraine is poorly funded both in the public and charity sectors then, as we have seen in our own investigation and in the report mentioned above. It is a silent invisible disorder, taking its sufferers away to recover in dark, quiet and private areas. This unsociable image may be a factor reducing the conditions claim to greater funding. People may perceive that nothing can be done for individuals who suffer from it.
It is clear that neither the number of people who suffer from a condition nor the economic cost of a condition can provide a straightforward explanation of the size of the charities that support them.
Our next step is to look at some other factors which might explain what drives the size of charities working on different medical conditions and disabilities. This will take us to investigate the potential influence of the proportion of people who die from a condition the mortality rate.
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Section 4: Is mortality rate important?
Out of the many factors which could affect the size of a charity mortality rate, expense of treatment, role of NHS, emotional pulling power, visibility, awareness and nature of condition as a secondary cause we will examine the first of this list to see if it directly impacts the size of a healthcare charity. We have chosen this factor to investigate since it is one of the most quantifiable.
Mortality rate data
So does the mortality rate of a health condition impact the size of its charity? Table 6 shows the mortality rate for each condition per 100,000 of the total population of England and Wales in 2011 using data provided by the ONS. For further information about the source of this data and methodology, see the appendix.
Table 6: Mortality rate for each condition, alongside total income raised per person with condition (ranked by mortality rate per 100,000 population)
Condition Number of deaths Mortality rate per 100,000 population Total income per person Condition Number of deaths Mortality rate per 100,000 population Total income per person Cancer 143,181 255.2 246.31 HIV/AIDS 192 0.3 211.91 Cardiovascular diseases (heart and circulation diseases) 139,706 249.0 108.65 (coronary heart disease) Crohn's 170 0.3 24.09 Lung conditions (respiratory diseases) 67,690 120.7 2.13 Muscular dystrophy 100 0.2 90.09 Dementia 37,762 67.3 88.76 Cystic fibrosis 97 0.2 1,158.44 Stroke 35,977 64.1 27.81 Meningitis 75 0.1 999.05 Lung cancer 30,148 53.7 120.28 Autism 0 0.0 129.27 Blood cancer 11,059 19.7 1,125.79 Back pain 0 0.0 0.03 Breast cancer 10,395 18.5 359.49 Deaf- blindness 0 0.0 313.42 Prostate cancer 9,671 17.2 558.99 Deafness in children 0 0.0 444.65 Gynaecological cancers 6,804 12.1 86.91 Eating disorders 0 0.0 0.70 Diabetes 4,893 8.7 7.42 Glaucoma 0 0.0 1.85 Skin disease and cancer 4,145 7.4 0.14 Hearing loss 0 0.0 3.75 Problematic births 4,044 7.2 32.84 High cholesterol 0 0.0 7.35 Parkinson's 3,710 6.6 172.62 IBS 0 0.0 0.02 Brain tumour 3,479 6.2 538.86 Learning disability 0 0.0 133.73 Teenager cancer (ages 15-24) 282 3.9 5,871.18 M.E. 0 0.0 2.76 17
Motor neurone disease 1,933 3.4 2,543.05 Migraine 0 0.0 0.06 Arthritis 1,607 2.9 4.02 Old age 0 0.0 15.97 Children's cancer (ages 0-14) 233 2.4 13,275.16 Raynaud's syndrome 0 0.0 0.05 Multiple Sclerosis 1062 1.9 289.19 Rett syndrome 0 0.0 203.74 Asthma 1,041 1.9 1.39 Sexual health 0 0.0 31.64 Epilepsy 937 1.7 34.16 Sight loss 0 0.0 55.80 Mental health 711 1.3 2.35
Cancer comes up as the biggest killer (255 per 100,000), followed closely by heart and circulation diseases (249), and then some way behind lung conditions (121), dementia (67), stroke (64) and lung cancer (54).
The 9 individual cancers listed (including skin cancer, group with skin disease) all appear within the top twenty conditions with the highest mortality rates. Interestingly, given the higher amounts raised by their representative charities, young peoples and child cancer have the lowest mortality rates of all the different types of cancer (3.9 and 2.4 respectively). 8 This is a further indication of the powerful emotional pull of childrens diseases combined with cancer, which is capable of conjuring great amounts of support for the cause.
For many of the conditions the mortality rate is zero nobody dies from hearing loss or ME. The mortality rate is a limited measure as does not take into account the fact that certain conditions may reduce ones life expectancy. It is not always straightforward to determine whether or not a particular condition can be said to be the direct cause of death (e.g. mental health or eating disorders). Eating disorders did not appear in the ONS data, and thus we have given this condition a rating of 0, although it is likely that some of the deaths grouped under mental health for instance could be attributed to eating disorders. For instance, it has been argued that 1 in 10 of those with eating disorders die from the condition, generally due to organ failure or suicide. 9 Conditions such as old age were not included in the data and whilst it is inevitably an unavoidable natural cause of death in many situations, we have included it here as 0. It is important to be aware of these limitations when it comes to interpreting the results.
Looking at the table, there appears to be no obvious relationship between income raised per person and the mortality rates. The ten conditions with a mortality rate of over 10 in 100,000 raise anything from 1,126 per person diagnosed with blood cancer each year, to 2.13 per person living with a lung condition. Meanwhile, charities working on non-mortal conditions raise anything from 445 per deaf child (NDCS), to 2p per person with IBS.
Like child and young peoples cancer, deafness in children also has a fairly large amount of money per sufferer relative to the mortality rate, proving again that
8 As discussed in the appendix below, the mortality rates for children and young peoples cancer were calculated per 100,000 of the population of the corresponding age. 9 http://www.eatingproblems.org/epseffect.html 18
young peoples illnesses attract high levels of support. However it is also true that a mortality rate is not the most reliable factor to go by for hearing loss since it is not a fatal condition but causes severe disadvantages in other areas. Nevertheless, as discussed above, NDCS raises 441 more per deaf child than Action on Hearing Loss raises per deaf person, showing a strong preference for young peoples charities.
The Cystic Fibrosis Trust raises 1,158 per person with cystic fibrosis despite its mortality rate of just 0.2 per 100,000 of the population. The expense of technology used in treatment and care will be an important factor in driving up the income per person. Plus the fact that there is not yet a cure suggests that some proportion of the income per person would go towards research for treatment for future sufferers.
If we accept that the mortality rate for eating disorders should not be zero, and instead closer to 1 in 10 of those with the condition, it should be asked why just 70p is raised per sufferer by the leading charity in this area. It seems that one factor that reduces the amount of money available per person with an eating disorder could be lack of awareness of the acute dangers of having this condition. B-eat and other charities are engaged in projects to raise awareness of eating disorders impact on mortality, but it seems that more could be done. Perhaps if these figures were more widely known, the public would support the cause and its associated charities more.
No statistically significant correlation between mortality rate and income per person
We ran statistical tests to determine whether there is a correlation between the mortality rate of a condition and the total income of the leading charity working in that area, as well as income per person (so taking into account prevalence figures). The tests showed that there was no statistically significant relationship between mortality rates and income, in contrast to the prevalence analysis above. Recognising that 15 of the 45 conditions have a mortality rate of 0, we ran the tests both including and excluding these conditions, and there was no difference to the finding.
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Conclusions
Our investigation has found that the picture is far more complicated than we thought. There is neither a simple relationship between prevalence and income, nor between mortality rates and income. Instead, we found that on average, charities working on conditions with an intermediate prevalence receive more income than those working on conditions with extremely low or high prevalence.
It seems clear that a range of factors, including those which are less easily quantifiable than prevalence and mortality rates, are likely to influence the size of healthcare charities.
The importance of government income Many of the charities in our research have substantial levels of government income, most notably Sense and Mencap. So the size of these charities is not driven by the level of their ability to bring donated income, but their ability to bring in income from local or central government by delivering services on their behalf.
The role of the NHS It is also important to consider the role of the NHS as opposed to charities in providing the necessary resources for the treatment and support of patients. Might this factor impact the size of a health charity? Perhaps charities whose conditions are well treated or researched by the state have lower incomes, as the state is seen to be filling the need. Perhaps a related factor determining the size of a healthcare charity is the need for long-term care, rather than treatment, which the NHS cannot wholly provide given its limited resources.
The emotional power of a condition Some health conditions have a greater emotional pull than others. It is certain that cancer has a high emotional appeal due to its image amongst the public. The emotional power of children with a disease or disability influences the money that gets injected into the cause these conditions come up trumps in terms of the income available per person, and when measured in relation to mortality rates. It seems that other conditions are less appealing, and suffer from this consequently. Although debilitating, widespread or bad for the economy, some conditions do not get the funding they necessarily deserve. Conditions such as digestive system disorders or back pain lack a certain level of emotional pulling power, which is an obstacle preventing them from becoming bigger. In our culture cancer is seen as a serious life-threatening condition, whilst back pain might be perceived as unserious - it might be played down or treated with a stiff upper lip. How we measure emotional pulling power is hard to determine!
The visibility and public awareness of conditions Some health conditions are more physically visible than others, which might impact the size of a charity concerned with the condition. Some disabilities, for example, have many recognisable outward manifestations, such as mobility problems. Conditions such as mental health problems are much harder to spot.
Awareness is another important factor which might affect the size of a charity. People have been aware of conditions such as hearing loss and blindness for 20
centuries, with RNIB being set up in its original form in 1868 and RNID (now Action on Hearing Loss) in 1911, whilst problems such as eating disorders have only entered the national consciousness in more recent years. Knowledge about these conditions is likely to be much lower, therefore, and this might be a limiting factor on the expansion of healthcare charities. Charities supporting more newly recognised conditions have had less time to grow.
The potential seriousness of conditions It should be noted that mortality rate is not a perfect measure of the seriousness of a condition, since not only are there difficulties in determining the mortality rate for all conditions (see appendix), but it does not take into account conditions which increase the risk of mortality, for instance by causing a more dangerous illness. Therefore it is particularly complicated to determine what influence the potential seriousness of conditions such as high cholesterol or old age might have on the level of income raised for these groups.
The effectiveness of a charity For all the influence of these various factors, it is hard to escape one other potential explanation. Namely, that some charities just dont do justice to the size or severity of the condition they represent. When there are millions of people affected by a condition and yet the main charities that champion a condition only raise pence per person it is hard not to conclude that they must do better. When there are 5.4 million people with asthma and 8 million with migraine and the charity that represents the former is over 15 times bigger than the one that represents the latter, its hard not to draw conclusions about charities punching below their weight.
So what should medical and disability charities be doing to maximise their income and impact?
So what should a charity do to maximise its income and impact on those people it exists to help if it is raising just pence per person? Here is our list of areas in which it needs to deliver. Work out its case for support. Every medical or disability charity needs to be clear why people will support it. Is it because they have the condition, or because they know somebody who does, or because they just think its a terrible illness or disability? Its not enough to say There are lots of us. Support us. Identify and understand the key audiences. Swift on the heels of a case for support is the identification of a key audience or audiences. For a small charity in particular simply saying everybody is hopelessly unfocused. The smaller the charity, the more its need to be focused on who the key audiences are. Once that is clear, the charity needs to understand them. What do they want? What do they feel about the condition? What motivates them? Set out the mechanisms for support. Many (small) medical and disability charities are obsessed with membership schemes. Yet very few membership schemes raise much money (i.e. profit) for the charity and many cost more than they earn. Membership is the fundraising equivalent of the bowler hat once in vogue but now outdated. People tend not to join membership organisations any more. Whatever is chosen as a support mechanism, make sure it fits the audience and is as good as it can be. 21
Copy other charities. There is no shortage of organisations whose work can be examined. All their accounts are on the Charity Commission website. All charities can be mystery shopped. There is virtually no limit on the number of ways that a charity can get inspiration and ideas from the success (and failure) of others. Raise your profile. Many charities have raised their profile using the media and social media. Write reports on the economic impact of your condition. Gather case studies to demonstrate the individual impact a condition can have. Cultivate relationships with influential people who have the condition and who might be able to raise the charitys profile (or money). The key thing to remember is that it isnt only paid-for advertising that raises profile, indeed it rarely is. Be ambitious. If our research inspires organisations to grow then it will have served its purpose. Far too many charities spend their time explaining why they are small and pointing to the recession, rather than developing a strategy to make them bigger. One thing is for sure, if nobody in an organisation, neither the staff nor the trustees, are hungry for a charity to grow and do better, it will almost certainly continue to be mediocre.
And finally
As with all speculative research, this work represents only the beginning of an interesting line of research. It would be fascinating to analyse the costs required to care for or treat, rather than just the income raised, for each sufferer of a health condition. What is the cost of treating a child with cancer? What is the cost of helping someone with an eating disorder? Or with a migraine? It would also be pertinent to find out what the NHS spends on these conditions, and to compare this with that spent by charities. How does the spending of the NHS differ across health conditions either by the cost of treatment or the amount invested in research?
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Appendix: methodology and data sources
Prevalence
To gauge the prevalence of a particular condition we carried out desk research, obtaining figures from a number of websites run by charities and organisations such as the NHS working in the relevant areas (listed below). For the vast majority of conditions we have found a figure estimating the number of people currently living with that condition. Inevitably these figures are all estimates since there is no fully comprehensive data collection method, and it is often possible to find significantly varying estimates. We have sought to ensure that all statistics used are from up to date and credible sources.
For a smaller number of conditions, we were unable to find estimates of the number of people living with that condition so have instead included the number of new cases each year (the incidence). This is the case for individual types of cancer, meningitis, problematic births and STIs (shown in italics in the table below). To some extent this reflects the differences in terms of the on-going effects of living with conditions such as dementia, hearing loss or motor neurone disease, in contrast to shorter-term conditions such as meningitis or STIs, however it is inaccurate to suggest that there are never longer-term effects of these diseases, nor that the charities working in these areas are not concerned with individuals who were diagnosed in past years.
Prevalence of each condition, ranked by number Condition Number Notes Source High cholesterol 34,000,000 Estimated that 2 in 3 adults in the UK have high cholesterol (estimated 51m adults) http://heartuk.org.uk/files/u ploads/documents/HUK_me mberapplicationform_1.pdf Irritable Bowel Syndrome 17,000,000 Estimated that up to 1 in 3 of the UK adult population (estimated 51m) experience IBS symptoms at any one time. http://www.corecharity.org.u k/conditions/irritable-bowel- syndrome Back pain 17,000,000 Estimated that back pain affects around 1 in 3 of the UK adult population each year (estimated 51m adults) http://www.rnoh.nhs.uk/clini cal-services/integrated-back- unit/active-back-programme High blood pressure 16,000,000 Estimated number of people in the UK with high blood pressure http://www.bloodpressureuk .org/microsites/kyn/Home/M edia/Factsandfigures Mental health 12,750,000 Estimated that 1 in 4 British adults experience at least one diagnosable mental health problem in any one year (estimated 51m adults) http://www.mentalhealth.or g.uk/help- information/mental-health- statistics/UK- worldwide/?view=Standard 23
Obesity 12,750,000 Estimated that just over 1 in 4 adults in the UK are obese (estimated 51m adults) http://www.nhs.uk/condition s/Obesity/Pages/Introduction .aspx Old age 10,500,000 Estimated number of people aged over 65 in the UK http://www.parliament.uk/b usiness/publications/researc h/key-issues-for-the-new- parliament/value-for-money- in-public-services/the- ageing-population/ Raynaud's syndrome 10,000,000 Estimated number of people with Raynaud's in the UK http://www.raynauds.org.uk / Hearing loss 10,000,000 Estimated number of people in the UK with some form of hearing loss (including 800,000 who are severely or profoundly deaf) http://www.actiononhearingl oss.org.uk/your- hearing/about-deafness-and- hearing-loss/statistics.aspx Arthritis 10,000,000 Estimated number of people in the UK with arthritis http://www.nhs.uk/condition s/Arthritis/Pages/Introductio n.aspx Migraine 8,000,000 Estimated number affected by migraines in the UK http://www.migrainetrust.or g/factsheet-men-and- migraine-10916 Skin disease and cancer 8,000,000 Estimated number of people living with a skin disease in the UK http://www.britishskinfounda tion.org.uk/AboutUs.aspx Asthma 5,400,000 Number of people in the UK currently receiving treatment for asthma http://www.asthma.org.uk/a sthma-facts-and-statistics Diabetes 3,750,000 Estimated number of people with diabetes in the UK (2011), including an estimated 850,000 who may have diabetes but have not been diagnosed http://www.diabetes.org.uk/ Documents/Reports/Diabetes -in-the-UK-2012.pdf Lung conditions 3,000,000 Estimated that over 3 million people live with Chronic obstructive pulmonary disease (COPD - a collection of lung diseases) in the UK, of which only about 900,000 have been diagnosed http://www.nhs.uk/Condition s/Chronic-obstructive- pulmonary- disease/Pages/Introduction.a spx Coronary heart disease 2,300,000 Estimated number of people in the UK living with coronary heart disease http://www.bhf.org.uk/resea rch/heart- statistics/morbidity/prevalenc e.aspx Cancer 2,000,000 Estimated that just over 2m people live with or beyond cancer in the UK in 2008 (331,487 new cases in the UK in 2010) http://www.cancerresearchu k.org/cancer- info/cancerstats/incidence/pr evalence/ 24
Sight loss 2,000,000 Estimated number living with sight loss in the UK (including 360,000 registered as blind or partially sighted) http://www.rnib.org.uk/abou tus/research/statistics/Pages /statistics.aspx Eating Disorders 1,600,000 Estimated number affected by an eating disorder in the UK http://www.b- eat.co.uk/about-beat/media- centre/facts-and-figures/ Learning disability 1,500,000 Estimated number of people with a learning disability in the UK http://www.learningdisabiliti es.org.uk/help- information/Learning- Disability-Statistics-/ Stroke 1,100,000 Estimated number of stroke survivors living in the UK. (152,000 strokes in the UK each year) http://www.stroke.org.uk/sit es/default/files/Stroke%20st atistics.pdf Dementia 800,000 Estimated number of people living with all forms of dementia in the UK http://www.alzheimers.org.u k/infographic Autism 700,000 Estimated number of people with autism in the UK http://www.autism.org.uk/a bout-autism/myths-facts- and-statistics/some-facts- and-statistics.aspx Epilepsy 500,000 Estimated number living with epilepsy in the UK http://www.jointepilepsycou ncil.org.uk/about/about_epil epsy.html Glaucoma 500,000 Estimated number living with the condition in the UK http://www.nhscareers.nhs.u k/features/2011/june/ Sexual Health 482,696 Number of new STI diagnoses in the UK in 2009 http://www.fpa.org.uk/facts heets/sexually-transmitted- infections#OtEOdKftI3EvszF 8.99 Deafblindness 250,000 Estimated number of deafblind people in the UK (2010) http://www.sense.org.uk/co ntent/how-many-deafblind- people-are-there M.E. 250,000 Estimated number living with the condition in the UK http://www.bupa.co.uk/indiv iduals/health- information/directory/c/hi- chronic-fatigue-syndrome Parkinson's 127,000 Estimated number living with the condition in the UK http://www.parkinsons.org.u k/content/what-parkinsons Problematic births 123,800 Between 2012-2013, there were 39,800 miscarriages that led to a hospital stay; there are an estimated 4,000 stillbirths in the UK each year; around 80,000 babies are born each year in the UK needing specialist hospital care http://www.tommys.org/pag e.aspx?pid=383; http://www.nhs.uk/condition s/stillbirth/Pages/Definition.a spx; http://www.bliss.org.uk/med ia-centre/facts-and-figures- 2/ Crohn's 115,000 Estimated number living with the condition in the UK http://www.nhs.uk/condition s/crohns- disease/pages/introduction.a spx 25
Multiple Sclerosis 100,000 Estimated number living with the condition in the UK http://www.nhs.uk/Condition s/Multiple- sclerosis/Pages/Introduction. aspx HIV/AIDS 96,000 Estimated number of people living with HIV in the UK http://www.nat.org.uk/HIV- Facts/Statistics/Latest-UK- Statistics.aspx Muscular dystrophy 70,000 Estimated number living with the condition in the UK http://www.nhs.uk/condition s/Muscular- dystrophy/Pages/Introductio n.aspx Breast cancer 50,285 Number of new cases in the UK in 2011 http://www.cancerresearchu k.org/cancer- info/cancerstats/incidence/co mmoncancers/ Deafness in children 45,000 Estimated number of children with hearing loss in the UK http://www.ndcs.org.uk/abo ut_us/ndcs/ http://www.actiononhearingl oss.org.uk/your- hearing/about-deafness-and- hearing-loss/statistics.aspx Lung cancer 43,463 Number of new cases in the UK in 2011 http://www.cancerresearchu k.org/cancer- info/cancerstats/incidence/co mmoncancers/ Prostate cancer 41,736 Number of new cases in the UK in 2011 http://www.cancerresearchu k.org/cancer- info/cancerstats/incidence/co mmoncancers/ Blood cancer 28,345 Number of new cases in the UK in 2011 http://leukaemialymphomare search.org.uk/news/resource s-press/facts-about-blood- cancers Children and young people with cancer 26,548 Estimated number of people aged 0-24 living with cancer, based on the number of people diagnosed with cancer in the period 1991-2010 and alive at the end of December 2010. http://www.ncin.org.uk/view ?rid=2493 Gynaecological cancers (uterine, ovarian, cervical, vulval, vaginal) 19,630 Number of new cases in the UK 2010 http://www.cancerresearchu k.org/cancer- info/cancerstats/types/uterus / .../ovarian .../cervix .../vagina-and-vulva-cancer Teenager cancer 16,612 Estimated number of people aged 15-24 living with cancer, based on the number of people http://www.ncin.org.uk/view ?rid=2493 26
diagnosed with cancer in the period 1991-2010 and alive at the end of December 2010. Brain tumour 9,156 Number of new cases in the UK in 2011 http://www.cancerresearchu k.org/cancer- info/cancerstats/incidence/co mmoncancers/ Cystic fibrosis 9,000 Estimated number living with the condition in the UK http://www.patient.co.uk/he alth/Cystic-Fibrosis.htm Motor neurone disease 5,000 Estimated number living with the condition in the UK http://www.nhs.uk/Condition s/Motor-neurone- disease/Pages/Introduction.a spx Meningitis 3,200 Estimated number of cases per year in the UK http://www.meningitis.org/fa cts Rett syndrome 2,500 Estimated number of females affected in the UK http://www.neural.org.uk/st ore/assets/files/20/original/N euroNumbers.pdf
Charities
To ascertain the size of the selected charities we have used their most recent annual total income, as published in the charitys most current financial history on the Charity Commission website (as of December 2013). This is an effective guide since it demonstrates the annual resources available to the charity and indicates the scale of their work.
We have focused on the amount raised by the leading charity concerned with each condition. The leading charity was defined in terms of highest total income, as retrieved from the Charity Commission register. For most conditions there is a clear market leader, for instance Asthma UK, Diabetes UK, National Back Pain Association. Even though there are clearly numerous charities working on cancer, including big charities such as Macmillan Cancer Support and Marie Curie Cancer Care, Cancer Research UK nevertheless dwarfs all of them (raising over 3 times the amount of total income of Macmillan or Marie Curie). However one notable exception is breast cancer, where there are a number of charities of considerable size; for instance whilst Breakthrough Breast Cancer is the largest charity in this area, Breast Cancer Care and Breast Cancer Campaign raise more between them than Breakthrough. By focusing on only the leading charity this analysis is unable to investigate further the variation in number of charities, and their size, working on each condition. This limitation is potentially an area for future research.
Mortality rates
We have calculated the mortality rate of each condition for England and Wales, using the Office of National Statistics Mortality Statistics: Deaths Registered in England and Wales (Series DR), 2011. 10 The data available made it more
10 http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77- 277727; Also accessible via the Guardian Datablog: 27
straightforward to use mortality rates for England and Wales, and although it would have been preferable to use UK rates (since the prevalence figures are for the UK), it is unlikely that there is significant difference between mortality rates in England and Wales and in the UK overall. The most important thing was to ensure that when we compare mortality rates with each other that we are comparing like with like, thus we have ensured that all mortality rates included in the comparison are for England and Wales.
We have calculated the rate per 100,000 of the population of England and Wales, using the 2011 Census total population figure of 56.1m, 11 and for child and young peoples cancer 9.9m and 7.3m respectively. 12 For problematic births, the estimated number of stillbirths (see prevalence figures), was added to the number of maternal deaths.
Nevertheless it is not straightforward always to determine whether or not a particular condition can be said to be the direct cause of death (e.g. mental health or eating disorders) and not all conditions appear in this dataset (e.g. eating disorders or old age). The ONS dataset for instance groups deaths due to drug use; schizophrenia and mood affective disorders under mental and behavioural disorders.
Finally
Whilst analysing our results in this investigation, as well as making general conclusions about healthcare charities, it is important to take each health condition into consideration separately, since each differs in nature, as do the charities that deal with them.
Despite all these precautions we dont imagine we will always get it right. So if you think you have more accurate date on either our data for prevalence, mortality or income please let us know. Alternatively if you just want to tell us you found our research woefully inadequate or stunningly insightful, Joe Saxton is your man (email Joe Saxton on joe.saxton@nfpsynergy.net or give him a call on 07976 329212).
http://www.theguardian.com/news/datablog/2012/nov/06/deaths-mortality-rates-cause- death-2011#data 11 http://www.ons.gov.uk/ons/rel/mro/news-release/census-shows-population-of-england- and-wales-is-over-56-million/censusengwalnr0712.html 12 Table P01 2011 Census: Usual resident population by single year of age and sex, England and Wales http://www.ons.gov.uk/ons/publications/re-reference- tables.html?edition=tcm%3A77-257414