The Health and Care of People with Learning Disabilities dataset: Diabetes

Note: if you want to skip the graphs, go straight to the conclusions for a quick summary...

We've known for a long time about the health inequities experienced by people with learning disabilities. We know these health inequities are big, resulting in much earlier typical ages of death compared to other people, and we know that these health inequities cut across a wide range of health conditions.

This blogpost will summarise some recent information about people with learning disabilities with a diagnosis of diabetes. 

This blogpost is the second of a series going into a lot of detail using information from the 'Health and Care of People with Learning Disabilities' dataset, compiled by NHS England. Every year (going April to March), this takes information from GP information systems in England to produce statistics about the health and health treatment of people registered with a GP as a person with learning disabilities, often comparing them to the health and healthcare of people without learning disabilities. It's a brilliant source of information that isn't used as much as it should be. The interactive information tool is quite hard to get your head around but it does make it quite flexible - for many things you can look at how things are by age, sex, region and even more locally than that, and for most things you can look back over at least the last five years. The most recent information available covers April 2024 to March 2025, with updates usually released every year in December.

Before we start, there are a few cautions to bear in mind about this dataset. The biggest one is that the information only covers about 6 in 10 people registered with a GP (54.6%) - not all the companies that own the electronic information systems used by GPs allow their data to be used (!). So coverage across different parts of the country is really patchy. The second caution is that there are likely to be many people with learning disabilities who are not registered as such with their GP. A third caution is that the extent to which this dataset includes people with learning disabilities in inpatient units really isn't clear. Finally, it's really important to remember that all this information is based on what health systems and GPs record, which is likely to have its own biases, particularly when it comes to people with learning disabilities.

Type 1 diabetes

Type 1 diabetes is an autoimmune condition where the pancreas stops producing insulin. The body attacks the healthy pancreas cells by mistake which causes it to stop producing insulin which the body needs to regulate blood sugar. Type 1 diabetes often runs in families and you are more likely to develop the condition if a close relative has the disease. Unlike Type 2 diabetes, there is no link between being overweight or inactive and developing the condition.

In 2024/25, 0.8% of people with learning disabilities had a diagnosis of Type 1 diabetes mellitus, compared to 0.4% of people without learning disabilities. These percentages haven't changed much from 2017/18 (0.7% of people with learning disabilities; 0.4% of people without learning disabilities). [I know the graph looks odd in terms of changes over time for different groups, but I've checked it multiple times and it's a quirk of rounding numbers up or down].

In terms of sex (the term used in the dataset), slightly more girls/women (0.8% in 2024/25) than boys/men (0.7% in 2024/25) with learning disabilities had a diagnosis of Type 1 diabetes, a similar difference (0.5% vs 0.4%) to people without learning disabilities. 

In terms of age bands, there are higher rates of Type 1 diabetes amongst people with learning disabilities at all age bands up to 64 compared to people without learning disabilities, peaking at 1.0% of people with learning disabilities aged 25-34. From the age of 65 onwards people with learning disabilities are equally or less likely than other people to have Type 1 diabetes, with no-one with learning disabilities aged 75+ reported as having Type 1 diabetes (compared to 0.3% of people without learning disabilities).

Type 2 diabetes

The Health and Care dataset has very similar information about diagnosis of what it describes as non-type 1 diabetes mellitus, which I am taking to mean Type 2 diabetes. Type 2 diabetes is a condition affecting the pancreas which leads to disruption of the hormone insulin and high blood sugars. Risk factors include being overweight, inactivity, having a family history of diabetes, or being from certain ethnic backgrounds. If left untreated, diabetes can lead to uncontrolled blood sugar, poor circulation and consequent damage to feet (including amputations) and eye problems.

The graph below shows rates of non-Type 1 diabetes recorded for people with and without learning disabilities over time, from 2017/18 to 2024/25. Overall, the percentage of people with learning disabilities diagnosed with non-Type 1 diabetes has increased over time, from 6.7% of people in 2017/18, to 8.0% of people in 2024/25. There has also been a less steep increase for people without learning disabilities (from 4.7% of people in 2017/18 to 5.5% of people in 2024/25). Rates of diagnosed non-Type 1 diabetes overall are higher for people with learning disabilities compared to other people, with the gap widening over time.

Amongst people with learning disabilities, girls/women are more likely to be diagnosed with non-Type 1 diabetes (9.0% in 2024/25) than boys/men (7.4% in 2024/25). This is the opposite pattern to people without learning disabilities, where girls/women are less likely to be diagnosed with non-Type 1 diabetes (4.9% in 2024/25) than boys/men (6.1% in 2024/25).

In terms of age bands, there are higher rates of non-Type 1 diabetes for people with learning disabilities overall at all ages from 10 onwards, with 8.5% of people with learning disabilities aged 35-44 having a diagnosis of non-Type 1 diabetes compared to 2.2% of other people, and 15% or more of people with learning disabilities having a diagnosis of non-Type 1 diabetes from the age of 45 onwards. While rates of non-Type 1 diabetes are higher for girls/women with learning disabilities than boys/men with learning disabilities up to the age of 44, this flips from the age of 45 onwards.

Measuring blood glucose

The Health and Care of People with Learning Disabilities dataset also records how many people with a diagnosis of diabetes mellitus (Type 1 and Type 2) have had their blood glucose measured in the last 12 months (HbA1c), as a way of checking how well people are generally doing in managing their diabetes. This is a basic measure of how well health services are regularly monitoring people with diabetes - it doesn't say anything about how well people are managing their diabetes or what help people are getting beyond regular monitoring.

The graph below shows what percentage of people have a diagnosis of diabetes and have had their blood glucose checked in the last 12 months, from 2017/18 to 2024/25. For people with learning disabilities in 2024/25, 8.1% of people had had their blood glucose checked - this is compared to the 8.8% of people with learning disabilities in 2024/25 with a diagnosis of either Type 1 or Type 2 diabetes. So most people with learning disabilities and diabetes, but by no means everyone, had had their blood glucose checked in the last 12 months. For people without learning disabilities in 2024/25, 5.4% of people had had a blood glucose test in the last 12 months, out of the 5.9% of people with a diagnosis of Type 1 or Type 2 diagnosis. 

For people with and without learning disabilities, the percentage of people getting a blood glucose test has increased over time. For people with learning disabilities, this is an increase from 6.8% of people in 2017/18 to 8.1% of people in 2024/25; for other people this is an increase from 4.7% of people in 2017/18 to 5.4% of people in 2024/25. This has been a steady year-on-year increase, except for a dip during the Covid-19 pandemic in 2020/21.

But as we've seen earlier on, the percentage of people with learning disabilities with a diagnosis of diabetes has also increased over time, and at a faster rate than for people without learning disabilities. This means that the gap between people with a diagnosis of diabetes and those with a blood glucose test has increased slightly over time for people with learning disabilities (the gap was 0.6% of people in 2017/18 compared to 0.7% of people in 2024/25). 

As we saw earlier, in relation to diabetes diagnoses, more girls/women with learning disabilities than boys/men in 2024/25 had had their blood glucose checked in the last 12 months (9.1% vs 7.5%). This is the opposite way round for girls/women vs boys/men without learning disabilities (4.8% vs 5.9% in 2024/25).

In terms of age bands, the age pattern of blood glucose checks closely mirrors the age pattern of diabetes diagnoses (particularly for the more common non-Type 1 diabetes) that we saw earlier, being much more common for people with learning disabilities at virtually all ages.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2024/25 a diagnosis of Type 1 diabetes was 1.6 times as common and a diagnosis of non-Type 1 diabetes 1.9 times as common among people with learning disabilities than you would expect. 

Conclusions

Both Type 1 and Type 2 diabetes are more commonly diagnosed amongst people with learning disabilities compared to other people, and are increasing faster over time. In 2024/25, around 1 in 11 people with learning disabilities had some form of diabetes diagnosis, compared to 1 in 17 people without learning disabilities.

These differences are biggest in almost all adult age groups.

Girls/women with learning disabilities are more likely than boys/men with learning disabilities to have a diagnosis of Type 2 diabetes and to have blood glucose checks - this is the opposite way round to the population of people without learning disabilities.

This dataset doesn't tell us anything about ethnicity and diabetes amongst people with learning disabilities, which we know is an important issue among people without learning disabilities.

Most (but not all) people with learning disabilities with a diagnosis of diabetes are getting a regular blood glucose check - this is increasing over time, but is not quite keeping pace with the increasing numbers of people with learning disabilities with a diagnosis of diabetes.

There are also a few things I want to say about this that will come up time and time again (if I ever get round to other blogposts about this dataset)...

1) I think this info shows the value of the huge effort involved in setting up regular health checks for people with learning disabilities, as long as they are done well. I suspect that annual health checks have been crucial in spotting diabetes (especially Type 2 diabetes) and in regularly monitoring people's diabetes, particularly among younger adults with learning disabilities.

2) However, while this monitoring clearly has important benefits for aspects of people's health, monitoring on its own is not enough. The evidence for weight management or physical activity programmes working well for people with learning disabilities is not brilliant, and we are not paying any attention to the 'causes of the causes' (in Sir Michael Marmot's phrase) like poverty and where people are living. 

3) I think the information about age is really important and is often overlooked. For diabetes (and for a whole host of other health issues) we see a clear pattern of health problems starting much earlier for more people with learning disabilities. Which is unlikely to be where GPs and health services are generally expecting to see, or be screening for, these health problems. It's also the case that among people without learning disabilities, many health conditions are most common at much older ages. Bluntly, many people with learning disabilities don't live that long, so overall figures across all age groups tend to minimise health inequities between people with and without learning disabilities.

4) Relating to the point just above, it's important to remember that although percentages of health issues like diabetes are more common amongst people with learning disabilities, in terms of absolute numbers of people they can be swamped by the numbers of people without learning disabilities. The Health and Care of People with Learning Disabilities dataset covers 55% of people in GP practices in England - scaling up figures from the dataset would mean there are just over 28,000 people with learning disabilities diagnosed with Type 2 diabetes in England, compared to 3.5 million people without learning disabilities. Easy to ignore in mainstream health services, or an easily manageable number of people for health services to pay attention to and make a big difference?

The Health and Care of People with Learning Disabilities dataset - how many people are taking mental health medications?

Note: if you want to skip the graphs, go straight to the conclusions for a quick summary...

For over 30 years, it's been clear that huge numbers of people with learning disabilities in England (and in other places too) are prescribed (told by their doctor to take) what are sometimes called 'psychotropic' drugs - drugs that are prescribed to change something about a person's mental state. Typically, these are drugs prescribed for reasons of 'mental health', although they might also be prescribed to change a person's behaviour. Recent research led by Sue Caton at Manchester Metropolitan University with co-researchers with learning disabilities has shown that people with learning disabilities are often not involved in decisions about what mental health medications they're taking (this link goes to a toolkit produced by the project that might help people get more involved in these decisions).

In England, NHS England and other organisations have been running the STOMP programme since 2016. STOMP stands for 'Stopping over medication of people with a learning disability, autism or both'. More recently STAMP ('Supporting Treatment and Appropriate Medication in Paediatrics) has been added by NHS England. Part of the aim of both these programmes is to reduce the number of people with learning disabilities and autistic people who are prescribed these drugs.

This blogpost will summarise some recent information about the percentages of people with learning disabilities being prescribed a range of mental health drugs. 

This blogpost will be the first of a series going into a lot of detail using information from the 'Health and Care of People with Learning Disabilities' dataset, compiled by NHS England. Every year (going April to March), this takes information from GP information systems in England to produce statistics about the health and health treatment of people registered with a GP as a person with learning disabilities, often comparing them to the health and healthcare of people without learning disabilities. It's a brilliant source of information that isn't used as much as it should be. The interactive information tool is quite hard to get your head around but it does make it quite flexible - for many things you can look at how things are by age, sex, region and even more locally than that, and for most things you can look back over at least the last five years. The most recent information available covers April 2024 to March 2025, with updates usually released every year in December.

There are a few reasons that I want to go into mind-numbing detail this time around (it's not ONLY that I like graphs). First, I'm not going to be doing these blogposts for ever, so I want to make the ones I do as full of information as possible for completeness. Second, I want to show what these kinds of datasets can do, in the hope that people will keep using them. Third, a recent 'consultation' has said that this is the last year that this dataset in this format will be produced. It will be replaced by something that might have more information and will cover all GP practices (a very welcome development), but will not have any way of directly comparing people with learning disabilities to people without learning disabilities (which is such a useful feature of the dataset as it stands).

Before we start, there are a few cautions to bear in mind about this dataset. The biggest one is that the information only covers about 6 in 10 people registered with a GP (54.6%) - not all the companies that own the electronic information systems used by GPs allow their data to be used (!). So coverage across different parts of the country is really patchy. The second caution is that there are likely to be many people with learning disabilities who are not registered as such with their GP. A third caution is that the extent to which this dataset includes people with learning disabilities in inpatient units really isn't clear. Finally, it's really important to remember that all this information is based on what health systems and GPs record, which is likely to have its own biases, particularly when it comes to people with learning disabilities.

'Severe mental illness' and antipsychotics

Antipsychotics are a set of drugs that are supposed to be prescribed for people with mental health issues with labels such as psychosis, which in GP-record world (along with some other mental health issues) are classed as 'severe mental illness'.

In 2024/25, 7.6% of people with learning disabilities were diagnosed with a 'severe mental illness', compared to 1.0% of people without learning disabilities. A clutch of research projects have shown that mental health issues such as psychosis might be more common amongst people with learning disabilities, but nowhere near to the extent that GPs are diagnosing severe mental illness, with the suspicion that some people with learning disabilities are getting this label to justify them being prescribed antipsychotic drugs for reasons essentially of attempted behavioural control. These percentages haven't changed much from 2017/18 (7.6% of people with learning disabilities; 0.9% of people without learning disabilities).

In terms of sex (the term used in the dataset), more girls/women (8.0% in 2024/25) than boys/men (7.4% in 2024/25) with learning disabilities had a severe mental illness diagnosis, while there was no difference amongst people without learning disabilities. 

In terms of age bands, substantially more people with learning disabilities are diagnosed with severe mental illness from an early age (e.g. 10% or more from the age of 35-44 onwards) than people without learning disabilities, peaking at 16.3% of people with learning disabilities aged 65-74.

Antipsychotics. Overall, in 2024/25 13.8% of people with learning disabilities were being prescribed antipsychotics, compared to 0.9% of people without learning disabilities. For people with learning disabilities, this was a reduction from 15.5% of people being prescribed antipsychotics in 2017/18 (there was no change over time for people without learning disabilities). 

Fewer girls/women with learning disabilities were being prescribed antipsychotics (12.9% in 2024/25) than boys/men with learning disabilities (14.3% in 2024/25). 

In terms of age bands, the percentage of people with learning disabilities prescribed antipsychotics increases sharply from the age of 10 - from the ages of 25-34 years onwards, more than 10% of all people with learning disabilities in 2024/25 were being prescribed antipsychotics, peaking at 23.5% of people aged 65-74.

From 2020/21 onwards, the Health and Care dataset has added information on people being prescribed antipsychotics when they don't have a diagnosis of severe mental illness or palliative care needs. In 2024/25, 8.2% of people with learning disabilities (6.9% of girls/women; 9.1% of boys/men) without a severe mental illness diagnosis were still getting prescribed antipsychotics, compared to 0.4% of people without learning disabilities or a severe mental illness diagnosis. The percentage of people with learning disabilities prescribed antipsychotics in the absence of a diagnosis of severe mental illness has reduced over time, from 9.3% of people in 2020/21 to 8.2% in 2024/25.

These prescriptions in the absence of a severe mental illness diagnosis also rise steeply for people with learning disabilities from an early age - 10% of adults with learning disabilities without a diagnosis of severe mental illness are prescribed antipsychotics by the age of 25-34.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2024/25 being prescribed antipsychotics was 14 times more common among people with learning disabilities than you would expect from general population prescribing rates; for those without a diagnosis of severe mental illness this rose to being 18 times more common.

Depression and anti-depressants

The Health and Care dataset has very similar information about GP diagnosis of depression and the prescribing of anti-depressants.

Overall, the percentage of people with and without learning disabilities diagnosed with depression has increased over time, for people with learning disabilities (15.9% in 2024/25, up from 14.6% in 2020/21) and for people without learning disabilities (14.7% in 2024/25, up from 13.6% in 2020/21). Rates of diagnosed depression overall are higher for people with learning disabilities.

Amongst people with learning disabilities, girls/women were more likely to be diagnosed with depression (20.0% in 2024/25) than boys/men (13.2% in 2024/25). In terms of age bands, from the ages of 25-34 years onwards, more than 15% of people with learning disabilities had a diagnosis of depression, peaking at 25.5% of people aged 55-64.

Anti-depressants. Overall, in 2024/25, 22.4% of people with learning disabilities were being prescribed anti-depressants, compared to 11% of people without learning disabilities. Girls/women with learning disabilities were more likely to be prescribed anti-depressants (27.2% in 2024/25, compared to 14.6% of girls/women without learning disabilities) than boys/men with learning disabilities (19.4% in 2024/25, compared to 7.5% of boys/men without learning disabilities). 

In terms of age bands, from the ages of 18-24 years onwards, more than 15% of people with learning disabilities were being prescribed anti-depressants, peaking at 34% of people aged 55-64.

The Health and Care dataset has also been reporting on people being prescribed anti-depressants when they don't have a diagnosis of depression. In 2024/25, 12.4% of people with learning disabilities without a diagnosis of depression were being prescribed anti-depressants, compared to 4.4% of people without learning disabilities or a diagnosis of depression. For both groups, this had increased slightly since 2020/21 (11.6% of people with learning disabilities without a diagnosis of depression; 4.3% of people without learning disabilities or a diagnosis of depression). Again, this was more common for women with learning disabilities without a diagnosis of depression (13.7% in 2024/25) than men (11.5%). 

In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities but with no diagnosis of depression were being prescribed anti-depressants, peaking at 17.3% of people aged 65-74.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2024/25 being prescribed antidepressants was twice as common among people with learning disabilities than you would expect from general population prescribing rates; for those without a diagnosis of depression this rose to being 3 times more common.

Benzodiazepenes

Benzodiazepenes are a type of 'sedative' - they slow down the body and mind and are prescribed for acute anxiety or sleep problems, and it is recommended that they are not prescribed for more than four weeks at a time. The percentage of people with and without learning disabilities being prescribed benzodiazepenes is decreasing over time. In 2024/15, 6.1% of people with learning disabilities were being prescribed benzodiazepenes (down from 7.6% in 2017/18) compared to 1.4% of people without learning disabilities in 2024/25 (down from 2.4% in 2017/18). 

Amongst people with learning disabilities, in 2024/25 similar percentages of women with learning disabilities (6.4%) and men with learning disabilities (6%) were being prescribed benzodiazepenes.

In terms of age bands, more than 5% of people with learning disabilities from the age of 25 onwards were being prescribed benzodiazepenes.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2024/25 being prescribed benzodiazepenes was 5 times as common among people with learning disabilities than you would expect from general population prescribing rates. 

Conclusions

Many more people with learning disabilities than other people continue to be prescribed mental health medications, often without a relevant mental health diagnosis. Nearly 1 in 4 of all people with learning disabilities registered with GPs are on antidepressants, and 1 in 7 people with learning disabilities are on antipsychotics. 

While STOMP and STAMP initiatives might be having some impact on reducing the number of people being prescribed antipsychotics and benzodiazepenes, the increasing numbers of people being prescribed antidepressants is threatening to cancel out any of these gains. 

People with learning disabilities, compared to people without learning disabilities, are particularly likely to be prescribed mental health medications in the absence of a matching mental health diagnosis. This isn't news, but it doesn't stop it being a scandal.

There are also some big gender differences amongst people with learning disabilities, with little sign of these gaps closing over time. Women with learning disabilities are more likely to be prescribed antidepressants and than men with learning disabilities,  and it's the other way round for antipsychotics.

Significant numbers of people with learning disabilities are being prescribed these drugs at much earlier ages than people without learning disabilities (often in relatively early adulthood) for potentially longer periods of time. This is really worrying, given what we know about the side effects of many of these drugs over time, their addictive properties, and their potential impact on how they make people feel.

From the Health and Care dataset. we don't know how many people with learning disabilities are being prescribed more than one mental health drug, although a research project in Jersey suggested that almost a quarter (23%) of people with learning disabilities were being prescribed two or more mental health drugs. 

We also don't know any more how many people with learning disabilities in inpatient units are being prescribed these types of medications. 

The reductions in antipsychotic prescriptions show what can be achieved with concerted, consistent, targeted effort over many years, but also just how big the gap continues to be between people with and without learning disabilities. The increases in antidepressant prescriptions show what happens in the absence of such effort - for all the government talk about reducing health inequalities, the general way that societies and health services operate is taking existing horrendous inequities and making them worse. 

Social care finances and adults with learning disabilities - 2024/25 update

The Department of Health and Social Care have recently released their annual tranche of statistics concerning social care for adults in England (these were previously published by NHS Digital, then NHS England until this year). This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2024/25 figures. While the underlying information used seems to be the same, there have been changes this year to how the information is extracted (from individual records of people drawing on social care) and how the information is reported. This has led to improvements in some aspects of the information made public about adults with learning disabilities (particularly in information about people aged 65+), but less specific information sometimes being reported.

I have written a blogpost on the 2024/25 employment figures contained in the social care statistics, and one on how many adults with learning disabilities were drawing on social care in 2024/25. This third blogpost in the trilogy will focus on social care finances relating to adults with learning disabilities in 2024/25.

Question 1: How much money are councils spending on social care services for adults with learning disabilities?

The two graphs below show gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2024/25, broken down by categories of spending. One graph is on spending for adults with learning disabilities aged 18-64, and one for adults aged 65+ - it is really important to notice that the scales for the two graphs are very different (much more is being spent related to adults aged 18-64 than for adults aged 65+). It is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation, which as we enter a time of high inflation is going to be even more important to take into account. However, using 2014/15 as a baseline (there had already been big real-terms cuts to social care budgets by this point), the graphs also include lines of what expenditure would be if social care expenditure was increasing in line with inflation, using adult social care inflation figures from the previously available and invaluable PSSRU publication Unit Costs of Health and Social Care, and more recently from Kings Fund reports on social care.

 

A couple of observations. Overall, from 2014/15 to 2024/25, social services expenditure related to adults with learning disabilities continued its upwards trajectory in absolute terms, despite there being two years during the height of the Covid-19 pandemic when the number of people getting social care reduced. For adults with learning disabilities aged 18-64, expenditure increased at a compound annual growth rate of 5.9% per year, from £4.4 billion in 2014/15 to £7.8 billion in 2024/25. This represents 67% of all social care expenditure related to adults aged 18-64. For adults with learning disabilities aged 65+, expenditure increased at a compound annual growth rate of 6.9%, from £540 million in 2014/15 to £1.1 billion in 2024/25. This represents 8% of all social care expenditure related to adults aged 65+. Across both age groups, social care expenditure related to adults with learning disabilities represents 36% of all adult social care expenditure.

For both adults with learning disabilities aged 18-64 and adults with learning disabilities aged 65+, increases in expenditure ran ahead of inflation. This indicates local authorities trying to protect these budgets, while at the same time falling short of what would be needed given projected increases in the population of adults with learning disabilities needing social care support. It’s also important to remember that this social services expenditure includes expenditure from people’s own pockets in the form of client contributions (of which more later).

The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on supported living continues to increase and has now substantially overtaken spending on residential care - these two are by far the largest components of social care expenditure to support adults with learning disabilities. These are also the two categories of social care spending showing the biggest recent increases, although higher inflation means that most categories of social care spending are increasing in absolute terms (even if not in real terms) after some years of relatively flat spending.

 

 

Question 2: How much are people paying for social care in 'client contributions'?

When looking at the figures above on expenditure, it is important to remember that this is gross current expenditure - it does not take account of any income that might be coming into local authorities providing social care services. One source of income is 'client contributions' - money for social care support that is paid by people drawing on social care support or those close to them.

The two graphs below show the amount of income received by local authorities in client contributions for different types of social care support, for services for adults with learning disabilities aged 18-64 and for adults with learning disabilities aged 65+. As with the earlier overall expenditure graph, using 2016/17 as a baseline the graphs also include lines of what expenditure would be if client contributions for social care only increased in line with inflation.

For both adults aged 18-64 and adults aged 65+, the biggest types of client contributions were for residential care and contributions under the 'fairer charging' regimen and its successors. Also for both age groups, client contributions over time have increased faster than inflation, particularly in recent years. The compound annual growth rate for client contributions for adults with learning disabilities aged 18-64 in absolute terms is 7.4%, from £307 million in 2016/17 to £542 million in 2024/25. For adults with learning disabilities aged 65+, the compound annual growth rate in client contributions is 8.9%, from £66 million in 2016/17 to £129 million in 2024/25. This means that 8% of all social care expenditure related to adults with learning disabilities comes from client contributions.

Question 3: Are services charging more over time?

Unit costs (how much money services charge per person per week) for residential care and nursing care for adults with learning disabilities continued their upward trend in 2024/25 for adults aged 18-64, with a period of relatively little change in unit costs being replaced by big year-on-year increases partly related to increased inflation. For adults aged 18-64, the average cost to local authorities of residential care was £2,224 per person per week and nursing care £2,058 per person per week. Unit costs were cheaper in 2024/25 for adults aged 65+ compared to adults aged 18-64 (£1,441 per person per week in residential care; £1,319 per person per week in nursing care), with unit costs. It is worth noting that unit costs are higher for these services for adults with learning disabilities aged 18-64 than for any other group of people getting social care. 

 

Summing up

Social care spending for adults with learning disabilities reported in 2024/25 seems to accelerate longer-term trends, with increases just above inflation, continued increases in spending on supported living, and both supported living and residential care being the biggest types of social care spending. Big increases in inflation have had a huge impact on the increasing costs of social care services for adults with learning disabilities. Client contributions also continue to rise much faster than inflation year-on-year, as do unit costs. 

With people with learning disabilities and those close to them paying more and more in 'client contributions' (two thirds of a billion pounds in 2024/25), is scarce public and personal money being spent in the best ways? Why do so few people with learning disabilities own their own homes, when people are charged so much to effectively rent a place that is all too often, as George Julian documents here, dangerously awful? Why is so much professional time (and money) being spent on fending off and humiliating people who might need a little bit of help now and again in the name of eligibility, rather than investing in people to help them get the most out of life? I do worry about writing this kind of blogpost now, when the hills are alive with pernicious cries of 'overdiagnosis' and 'burden' on councils. and people with learning disabilities are increasingly being erased in blanket policy and service formulations of neurodiversity. Spending less isn't any kind of solution - working with people with learning disabilities and those close to them to spend it better is.

How many adults with learning disabilities in England are getting social care services - 2024/25 update

The Department of Health and Social Care have recently released their annual tranche of statistics concerning social care for adults in England (these were previously published by NHS Digital, then NHS England until this year). This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2024/25 figures. While the underlying information used seems to be the same, there have been changes this year to how the information is extracted (from individual records of people drawing on social care) and how the information is reported. This has led to improvements in some aspects of the information made public about adults with learning disabilities (particularly in information about people aged 65+), but less specific information sometimes being reported on specific kinds of social care services people are using.

I have written a blogpost on the 2024/25 employment figures contained in the social care statistics, and I will be writing one on the 2024/25 information about social care finances.  This blogpost is about what the statistics say about how many adults with learning disabilities were drawing on social care in 2024/25. 

Question 1: How many adults with learning disabilities were getting access to social care in 2024/25?

From 2014/15 to 2023/24 the types of long-term social care support people get were grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. The way this is reported has changed a bit in 2024/25, with in effect the two categories of direct payment (direct payment only and support via personal budget partly including a direct payment) being lumped together. Importantly, a category of ‘unknown’ has been added, where a local authority does not appear to know what form of long-term social care support a person with learning disabilities is getting. 

The first graph below shows the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support at some point during the year from 2014/15 to 2024/25, the number of adults aged 18-64 in residential or nursing care, and the number of adults aged 18-64 getting an unknown form of long-term social care (this is new for 2024/25, and represented by an orange square in the graph).

This graph suggests that some trends have been consistent from 2014/15 to 2024/25 for adults with learning disabilities aged 18-64, while other trends have been less consistent over time.

The number of people in residential care has continued to reduce year-on-year from 26,975 people in 2014/15 to 20,070 people in 2024/25. The number of people in nursing care gradually dropped from 2014/15 (1,265 people) to 2023/24 (1,000 people), but increased in 2024/25 (1,075 people). Overall, although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2024/25 they still represented 15% of all adults with learning disabilities aged 18-64 getting long-term social care.

The number of people getting social care in the form of direct payments (at least in part) increased from 2014/15 (34,845 people) to 2019/20 (44,875 people), dipped for two years coinciding with the height of the Covid-19 pandemic (to 44,195 people in 2021/22), and has since resumed its rise to 46,130 people in 2024/25. 

The most common form of long-term social care support recorded is the council-managed personal budget (the extent to which many of these feel any different to council-commissioned community services is debatable), which continued to increase fairly steadily over time (from 49,150 people in 2014/15 to 62,350 people in 2023/24). An apparent sharp drop to 56,060 people in 2024/25 matches almost exactly the number of people (5,955 people) newly classified in 2024/25 as getting an ‘unknown’ form of long-term social care. It is unclear to me why local authorities don’t know what long-term social care they are commissioning, and also why it seems that they were previously counting them as council-managed personal budgets.

Finally, while the number of people getting council-managed community support decreased substantially from 2014/15 (12,000 people) to 2020/21 (4,900 people), there have been big fluctuations since (currently recorded as 7,910 people in 2024/25).

In total 137,200 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2024/25. While there have been steady trends of increasing numbers of adults with learning disabilities getting long-term social care from 2014/15 to 2019/20 and from 2021/22 to 2024/25, from 2019/20 to 2021/22 during the height of the Covid-19 pandemic there were two years of decreases in these numbers. 

The second graph below presents the same information for adults with learning disabilities aged 65+. Because the number of people with learning disabilities aged 65+ using social care is much smaller compared to people aged 18-64, I have used a different vertical scale.

 

The number of people aged 65+ in residential homes (5,425 people in 2014/15) increased substantially up to 2018/19 (5,850 people), and with some minor fluctuations has remained at a similar level up to 2024/25 (5,875 people). With the exception of two years of decreasing numbers of people aged 65+ in nursing homes from 2018/19 to 2020/21, the number of people has increased year-on year from 670 people in 2014/15 to 920 people in 2024/25. For adults with learning disabilities aged 65+ getting long-term social care, 35% were getting this care in the form of residential or nursing care.

People aged 65+ getting long-term social care in direct payments at least in part increased year-on-year from 2014/15 (1,125 people) to 2021/22 (1,850 people) and has fluctuated since then (currently 1,690 people in 2024/25). 

As with adults aged 18-64, the most common form of long-term social care support recorded for adults with learning disabilities aged 65+ is the council-managed personal budget, which continued to increase fairly steadily over time (from 5,920 people in 2014/15 to 9,855 people in 2023/24). Again, an apparent sharp drop to 8,915 people in 2024/25 matches almost exactly the number of people (830 people) newly classified in 2024/25 as getting an ‘unknown’ form of long-term social care.

Finally, the number of people getting council-commissioned community support has decreased steadily over time from 2014/15 (1,430 people) to 2023/24 (685 people), although there was a sharp increase in 2024/25 (1,220 people).

Unlike the figures for adults with learning disabilities aged 18-64, there is a continuous year-on-year upward trend in the numbers of adults with learning disabilities aged 65+ getting long-term social care, from 14,570 people in 2014/15 through to 19,455 people in 2024/25. 

However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. The statistics also have snapshot figures on the number of people with learning disabilities getting adult social care at the end of each financial year, which we can compare to the number of people getting social care at some point during the year. The graph below shows this information for adults with learning disabilities aged 18+ (combining the figures for people aged 18-64 and people aged 65+), from 2014/15 to 2024/25. In 2020/21 and 2021/22, there is a clear reversal in the upward trend, before this resumes up to 2024/25.

There is also the question of whether the number of adults with learning disabilities getting long-term social care is increasing in line with projected increases in the number of adults with learning disabilities needing social care. The graph also includes projected numbers of adults with learning disabilities requiring social care support, taken from population projections published in 2012 and baselined for 2014/15. There are two projections using dashed lines - the dark blue dashed line is the number of adults with critical or substantial needs only, and the light blue dashed line is for the number of adults with critical, substantial or moderate needs. 

As the graph shows, up to 2019/2020 the number of adults getting long-term social care was just about keeping pace with the projected numbers of adults with critical or substantial needs (which is drawing the eligibility hurdle really quite high), but by 2024/25 the gap between the number of people projected to need social care and those actually getting social care was around 13,700 people. The gap is even greater if you take the projected number of adults with learning disabilities with critical, substantial or moderate needs (a gap of around 26,600 people in 2024/25).

Question 2: Where are people with learning disabilities living?

The headline social care statistics only report the living situations of people living in residential care and nursing homes, which I’ve covered above. Up until 2023/24, more detailed information was hidden away on where local authorities think adults with learning disabilities aged 18-64 getting long-term social care were living (see this past blogpost for an analysis of this information). In 2024/25, the way this information has been made available has changed quite a lot. The good news is that this information is now available for adults with learning disabilities aged 65+ as well as people aged 18-64. The bad news is that they have collapsed the detail of where people are living into four categories that to my mind feel pretty meaningless:

• Living at home or with family - supported (includes people living in approved premises for offenders, shared lives, sheltered housing, supported accommodation)
• Living at home or with family – unsupported (includes mobile accommodation, owner occupier, settled mainstream housing with family or friends, tenant, tenant with a private landlord)
• Not living at home – supported (night shelter, temporary accommodation, other temporary accommodation, refuge, rough sleeper, staying with family or friends in the short term)
• Not living at home – unsupported (prison, care home, nursing home, healthcare)

For what it’s worth, the graph below shows the information using these collapsed categories for people with learning disabilities aged 18-64 from 2014/15 to 2024/25. How this is more useful in understanding what kinds of places people are living in, and how things are changing over time, is beyond me.

 

For people with learning disabilities aged 65+ (for whom we only have information for 2024/25), the equivalent figures are:

• Living at home or with family – supported. 8,000 people
• Living at home or with family – unsupported. 4,650 people
• Not living at home – supported. 6,180 people
• Not living at home – unsupported. 85 people
• Living situation unknown. 545 people

Question 3: What do adults with learning disabilities think about the social care services they're getting?

At the same time as the publication of the 2024/25 social care statistics, information from the latest Personal Social Services Adult Social Care Survey for 2024/25 was also released by the Department of Health and Social Care. This is administered by councils to thousands of adults making use of social care services every year, and asks (in carefully developed and tested standard and easy read formats) a range of questions about people's experiences of social care services and about people's wellbeing and health.

The graph below presents responses to four questions in this survey from 2014/15 to 2024/25 for adults with a primary care need of learning disabilities. 

Overall, over 40% of people with learning disabilities report that their quality of life is at least very good, with this staying fairly stable over time except for a dip in 2020/21 (during the height of the Covid-19 pandemic) and levels returning to where they were before the pandemic by 2023/24. Around 75% of people with learning disabilities report that they are at least very satisfied with the services they get (the red line), with a temporary rise in 2020/21 (again potentially pandemic-related) and a return to pre-pandemic levels and possible a very gradual further decrease over time to 2024/25 (the 74.5% of people with learning disabilities reporting this in 2024/25 is the first time this figure has gone below 75% from the start of the current survey in 2014/15).

For self-rated general health (the green line), just over 70% of people with learning disabilities reported themselves to be in at least good health from 2014/15 to 2021/22 (through the height of the Covid-19 pandemic). However, since then the percentage of people reporting themselves to be in at least good health has started gradually dropping, standing at 67.8% of people in 2024/25.

Finally, from 2014/15 to 2017/18 just under half of people with learning disabilities rated themselves as not anxious or depressed. In 2018/19, there was an unexplained large jump in this figure for people with learning disabilities (though not for other groups of adults using social care) to just around 63% of people, where it was stayed ever since except for a dip in 2020/21. 

Although I haven’t reported the figures in detail in this blogpost, it’s worth mentioning that in this survey people with learning disabilities generally report a consistently much more positive experience than adults using social care with physical support needs or mental health support needs. The higher positivity of people with learning disabilities may be a genuine difference - it may also partly be a function of different question formats (people with learning disabilities are more likely to answer easy read format questions than other groups), and partly because people with learning disabilities were more likely to get help to answer questions, particularly from care workers, than the other two groups.

It’s also worth mentioning that the general lack of change in these ratings over a decade when things have got harder for a lot of people getting social care and including the COVID-19 pandemic, reinforces other research suggesting that these kinds of questions can be relatively insensitive to changes in people's circumstances.

Question 4: Are adults with learning disabilities equally likely to get long-term social care support wherever they live in England?

We regularly hear about the postcode lottery when it comes to all sorts of education, health and social care services across England. We also regularly hear about how there are real inequities in health and life expectancy depending on the relative affluence of the areas people live in. [we don’t appear to hear about these things regularly enough to do anything meaningful about it]

The two graphs below are a really simple way to get a handle on this, one graph for people with learning disabilities aged 18-64 and one for people aged 65+. Each tiny vertical bar is the number of people with learning disabilities in a particular council getting long-term social care per 100,000 people in the total population (to adjust for different councils having different numbers of people), then they’re just arranged from lowest to highest.

The graphs can have some extremes at each end because some councils (such as the City of London or the Isles of Scilly) are very unusual compared to most councils. Even taking this into account, both graphs show that you are much more or less likely to get some form of long-term social care support depending on where you live.

For adults with learning disabilities aged 18-64, there is wide variation in how likely you are to get long-term social care. Even knocking off the 5 most extreme councils at each end, you are more than twice as likely to get long-term social care in St Helens (587 people per 100,000) than you are in Ealing (263 people per 100,000). Of the bottom 10 councils, 9 of them are in London. Of the top 10 councils, 8 of them are in the north of England (spread across Merseyside, the North West and the North East).

It's also the case that there are many fewer adults with learning disabilities aged 18-64 getting social care than are registered with their GP as a person with learning disabilities. The mid-ranking councils in this graph are providing social care to 383 adults with learning disabilities per 100,000 people overall. Information from GP practices (from the Quality and Outcomes Framework) says that 590 people of all ages per 100,000 people overall are registered as a person with learning disabilities, and other information from GPs backs this up with more specific information for people with learning disabilities aged 18-64.

For adults with learning disabilities aged 65+, there is also wide variation in how likely you are to get long-term social care, although it is worth mentioning that the proportion of older adults with learning disabilities getting long-term social care is overall much lower than for adults aged 18-64. Some of this might be due to the brutal fact that people with learning disabilities don’t currently live as long as other groups of people (another inequity that we regularly hear about with little seeming impact on the fundamental action required). It might also be partly because some older adults with learning disabilities end up being identified as having a different ‘primary care need’ as they age and so are not visible in these statistics as people with learning disabilities.

Even knocking off the 5 most extreme councils at each end, you are more than three times as likely to get long-term social care in Liverpool (359 people per 100,000) than you are in Hampshire (112 people per 100,000). Of the bottom 10 councils, 8 of them are substantially rural counties (possibly where more affluent people tend to retire to, thus increasing the general age profile of the population). Of the top 10 councils, 7 of them are cities in the Midlands and North of England and 3 of them are in London, where the general age profile of populations may skew younger.

It's also the case that there are many fewer adults with learning disabilities aged 65+ getting social care than are registered with their GP as a person with learning disabilities. The mid-ranking councils in this graph are providing social care to 186 adults with learning disabilities per 100,000 people overall. Information from GP practices (from the Quality and Outcomes Framework) says that 590 people of all ages per 100,000 people overall are registered as a person with learning disabilities, and other information from GPs backs this up with more specific information for people with learning disabilities aged 65+.

Summing up

While the number of adults with learning disabilities getting long-term social care in England has started to increase again after drops in numbers during the height of the Covid-19 pandemic, the gap between how many people are likely to need services and how many people are actually getting services continues to widen. Many fewer adults with learning disabilities are getting long-term social care than are registered with their GP as a person with learning disabilities.

For adults with learning disabilities aged 18-64, pre-Covid trends in how people are getting their services seem to be continuing, with at least some use of direct payments and council-managed personal budgets continuing to increase, and residential care continuing to decrease, although there are recent upticks in the number of people in nursing care and getting services directly commissioned by the council. Worryingly, it seems that for a lot of people the council commissioning their social care doesn’t know how they are getting this social care.

For adults with learning disabilities aged 65+, there are some signs that longer-term trends are starting to be reversed. Council-commissioned personal budgets continue to increase, although direct payments may be starting to decrease and services directly commissioned by the council may be starting to increase. The number of people in residential care and in nursing has generally flatlined in the past decade, although there are signs that the number of people in nursing care is increasing. As with adults with learning disabilities aged 18-64, for adults aged 65+ it seems that for a lot of people the council commissioning their social care doesn’t know how they are getting this social care.

In a large survey collected by councils, Covid-era changes in how adults with learning disabilities reported their quality of life, satisfaction with services, anxiety/depression and general health have overall been quite temporary. Although these questions are quite insensitive to change, there are some signs that people are reporting their general health to be gradually getting worse since the Covid-19 pandemic.

As has always been the case, there are big variations across councils in how likely adults with learning disabilities are to be getting long-term social care. There are a lot of complicated reasons for this, but it is not right that depending on where you live you can be two or three times more likely to get long-term social care than if you lived in a different council area.

The way the information is reported has changed, with some new information for people with learning disabilities aged 65+ but a lot less detail on what kinds of places people are living in, to the point that (at least to my eyes) some of this information is pretty meaningless.