Not giving a shit

This is a quick post in response to the heartbreaking inquest for Sally Lewis, which George Julian has been assiduously reporting on in her blog https://www.georgejulian.co.uk/  Sally died as a result of the consequences of prolonged constipation, which despite Sally's 'support' service Dimensions knowing was an ongoing issue for her (and her GP flagging this up to people in the service), almost no-one working with Sally on a daily basis bothered to take seriously. The coroner reported a conclusion of gross neglect, which as those following George's reporting work will know is all too rare when it comes to the deaths of people with learning disabilities.

A final insult to the family is that they are having to crowdfund to pay for legal representation at Sally's inquest, while Dimensions have the funds to pay for lawyer after lawyer - if you have the resources, please consider a contribution https://www.crowdjustice.com/case/justiceforsally/  

In this post I'm just going to provide a short set of links to relevant evidence about constipation and people with learning disabilities, which has been around for some years now. 

1) At least one third of adults with learning disabilities are likely to be experiencing long-standing constipation at any one time, based on research directly assessing constipation.

2) In 2021/22, only 13.1% of people with learning disabilities in England registered with a GP were recorded by their GP to have had diagnosed or treated long-standing constipation in the previous five years - this figure has hardly changed from 2017/18 (13.3%).

3) Richard Handley died from the consequences of chronic constipation in 2012 - his inquest did not take place until 2018. He is by no means the only person with learning disabilities to have died as a result of constipation.

4) Amongst people with learning disabilities, long-standing constipation is one of the most common causes of being taken to hospital in an emergency.

5) Research has reported that over 25% of people with learning disabilities received a repeat prescription for laxatives in one year, compared to 0.1% of people without learning disabilities.

6) Beyond laxatives, there is little research on how to effectively help people with learning disabilities with long-standing constipation, and the evidence there is says that laxatives aren't always that helpful.

7) There is virtually nothing on how supported living and residential care services can support people with learning disabilities to live lives that reduce the chances of long-standing constipation, such as engaging in physical activity and eating healthier diets.

8) In 2019, NHS England identified constipation as a priority for action for people with learning disabilities following a LeDeR report identifying 12 people with learning disabilities dying as a result of constipation. Constipation leaflets were published in 2019, but have not been updated since.

9) In 2016, the Public Health England Learning Disabilities Observatory produced reasonable adjustments guidance (including an easy-read introduction) concerning constipation and people with learning disabilities. Funding for this Observatory stopped in 2019 and this guidance has not been updated since.

10) There are no NICE clinical guidelines relating to constipation and people with learning disabilities.

It's clear there's no reason for services not to know that constipation can be a serious problem for a lot of people with learning disabilities, and that the consequences of long-standing constipation can be fatal. It's also highly revealing that there's very little evidence about helping people live their lives in ways that would make constipation less likely, rather than prescribing laxatives. And it says something quite fundamental that nothing designed to seriously and practically address constipation amongst people with learning disabilities has been sustained. As a very wise colleague and friend said to me recently, how can you make people give a shit?

How many people with learning disabilities are prescribed mental health medications? Numbers from the 'Health and Care of People with Learning Disabilities' dataset

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.

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 simply summarise some recent information about the percentages of people with learning disabilities being prescribed a range of mental health drugs. It mainly uses information from the 'Health and Care of People with Learning Disabilities' dataset, compiled by NHS Digital (now merged into a mega 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 (to Sub Integrated Care Board level, it that floats your boat), and for most things you can look back over the last five years or so. The most recent information available covers April 2021 to March 2022, with updates usually released every year in December.

There are a few cautions to bear in mind though. The biggest one is that the information only covers about 6 in 10 people registered with a GP (59.2%). This is because the information is collected from the electronic information systems that GPs use, and one of the companies that own the electronic information system used by a lot of GPs wanted to charge too much money for it 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 - this is even more so for autistic people with registration with their GP as an autistic person (recognising that some people don't want to be registered with their GP in these ways). 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 2021/22, 7.5% of people with learning disabilities were diagnosed with a 'severe mental illness', compared to 0.9% 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 2021/22; up from 7.8% in 2017/18) than boys/men (7.2% in 2021/22, down from 7.4% in 2017/18) with learning disabilities had a severe mental illness diagnosis, while there was no difference amongst people without learning disabilities. In terms of age bands, from the age of 35-44 years onwards, more than 10% of people with learning disabilities had a diagnosis of severe mental illness, peaking at 15.8% of people aged 65-74.

Antipsychotics. Overall, in 2021/22 14.5% 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 15.8% 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 (13.9% in 2021/22, down from 14.4% in 2017/18) than boys/men with learning disabilities (15.0% in 2021/22, down from 16.2% in 2017/18). In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities in 2021/22 were being prescribed antipsychotics, peaking at 25.3% of people aged 65-74.

More recently, 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 2021/22, 9.1% of people with learning disabilities (7.8% of girls/women; 9.9% of boys/men) without a severe mental illness diagnosis were still getting prescribed antipsychotics, compared to 0.5% of people without learning disabilities or a severe mental illness diagnosis. 

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 being prescribed antipsychotics was 15 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, at a slightly higher rate for people with learning disabilities (14.5% in 2021/22, up from 13.2% in 2017/18) than people without learning disabilities (13.7% in 2021/22, up from 12.5% in 2017/18).

Amongst people with learning disabilities, girls/women were more likely to be diagnosed with depression (18.4% in 2021/22, up from 16.8% in 2017/18) than boys/men (12.1% in 2021/22, up from 10.7% in 2017/18). In terms of age bands, from the ages of 25-34 years onwards, more than 10% of people with learning disabilities had a diagnosis of depression, peaking at 22.9% of people aged 55-64.

Anti-depressants. Overall, in 2021/22, 21.2% of people with learning disabilities were being prescribed anti-depressants, compared to 10.7% of people without learning disabilities. Girls/women with learning disabilities were more likely to be prescribed anti-depressants (26.0% in 2021/22, compared to 14.2% of girls/women without learning disabilities) than boys/men with learning disabilities (18.1% in 2021/22, compared to 7.2% of boys/men without learning disabilities). In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities were being prescribed anti-depressants, peaking at 31.8% of people aged 55-64.

For a longer period of time, 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 2021/22, 12.0% of people with learning disabilities without a diagnosis of depression were being prescribed anti-depressants, compared to 4.5% of people without learning disabilities or a diagnosis of depression. For both groups, this had increased since 2017/18 (11.0% 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 (13.6% in 2021/22) than men (10.9%). 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 16.7% of people aged 55-64.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 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.

Other mental health drugs

The Health and Care dataset also reports on other types of drugs used to affect people's mental health or behaviour.

Benzodiazepenes are a type of 'sedative' - they slow down the body and mind and are prescribed for anxiety or sleep problems . In 2021/22, 7.1% of people with learning disabilities were being prescribed benzodiazepenes (down from 7.6% in 2017/18) compared to 1.8% of people without learning disabilities (down from 2.4% in 2017/18). 

Amongst people with learning disabilities, in 2021/22 more women with learning disabilities (7.6%, down from 8.1% in 2017/18) than men (6.8%, down from 7.2% in 2017/18) were being prescribed benzodiazepenes. In terms of age bands, more than 10% of people with learning disabilities between the ages of 45 and 74 were being prescribed benzodiazepenes.

Epilepsy drugs are used to help control seizures, but can also be prescribed to affect someone's behaviour. In 2021/22, 4.9% of people with learning disabilities without an active epilepsy diagnosis were being prescribed epilepsy drugs (down from 5.5% in 2017/18) compared to 2.4% of people without learning disabilities or an active epilepsy diagnosis (stable over time from 2017/18). Amongst people with learning disabilities without an active epilepsy diagnosis, in 2012/22 more women (5.6%) than men (4.4%) were being prescribed epilepsy drugs. 

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 being prescribed benzodiazepenes was 5 times as common among people with learning disabilities than you would expect from general population prescribing rates. In 2021/22, being prescribed with epilepsy drugs without an active epilepsy diagnosis was twice as common for people with learning disabilities than you would expect.

Conclusions

These statistics drawn from over half of all people registered with a GP in England, with all their caveats, clearly show that people with learning disabilities continue to be disproportionately prescribed mental health medications, often in the absence of a potentially relevant mental health or other diagnosis. While it might be argued that the STOMP and STAMP initiatives are having some impact on reducing the number of people being prescribed antipsychotics, benzodiazepenes and epilepsy drugs, the increasing numbers of people being prescribed antidepressants is threatening to cancel out any of these gains.

There are also some big gender differences amongst people with learning disabilities, with little sign of these gaps closing over time. And worryingly, 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, significant numbers of people with learning disabilities are being prescribed these drugs at much earlier ages than people without learning disabilities for potentially longer periods of time.

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 how many people with learning disabilities in inpatient units are being prescribed these types of medications. Finally we don't know much about what people with learning disabilities and those close to them think about these medications and what impact they have on people's lives - a new research project with co-researchers with learning disabilities is going to ask exactly these questions.