Potential risk factors for the impact of COVID-19 on health: People with learning disabilities

Potential risk factors for the impact of COVID-19 on health: People with learning disabilities

In this blogpost I want to set out some evidence related to people with learning disabilities and the potential impact of COVID-19 on people’s health. This is a separate issue from which factors might influence the likelihood of people with learning disabilities getting infected with COVID-19 – this blogpost is about the extent to which people with learning disabilities have co-occurring health issues that make the impact of COVID-19 potentially more serious.

The UK government has set out a list of groups which it considers to be at greater risk in terms of the potential impact of COVID-19 on people’s health, recommending that people in these group exercise social distancing and for some conditions self-isolation[1]. People with learning disabilities are included as a blanket group in this list as an example of a ‘chronic neurological condition’. There has also been more recent guidance[2] where “people defined on medical grounds as extremely vulnerable from COVID-19” have been advised to ‘shield’ themselves in self-isolation for 12 weeks – the list of medical conditions do not explicitly include people with learning disabilities as a blanket group.

How many people with learning disabilities are there in England?

People with learning disabilities as a whole are a big and very diverse group of people. The most recent estimate of the total number of people with learning disabilities in England, derived from 2015 figures and estimates[3], was almost 1.1 million people (1,087,100 people). Most people (930,400) were adults, with over three-quarters (77%) likely to be not known as such to health or social care services. In 2020 that overall number is likely to be bigger[4], although education and adult social care services have not kept pace with the increasing numbers and needs of some groups of people with learning disabilities[5].

In terms of people with learning disabilities recognised by services to the point of getting some form of meaningful support, in 2018 there were 67,765 children with an Education Health and Care Plan and a label suggestive of learning disabilities (Moderate Learning Difficulty – 28,241 children; Severe Learning Difficulty – 29,492 children; Profound Multiple Learning Difficulty – 10,032 children)[6].

In 2018/19 there were 133,575 adults with learning disabilities aged 18-64 and 17,045 adults with learning disabilities aged 65+ getting some form of long-term social care, a total of 150,620 adults. In 2018/19 a larger number of 297,174 people with learning disabilities of all ages were registered as a person with learning disabilities with their GP[7].

What are the potential risk factors for COVID-19 potentially having a greater impact on the health of people with learning disabilities?

There is still a lot of uncertainty about what might be linked to having a poorer reaction to COVID-19 if you catch it. It is also really important to say that we are talking about probabilities here for groups of people – it you are in a group at greater overall risk that does not at all guarantee that you will have a worse reaction to COVID-19 (and being in a low risk group does not guarantee that you will have a better reaction).

Based on the list of provided by the UK government in its social distancing guidance, what do we know about how common these risk factors are amongst people with learning disabilities?

Age – the general message seems to be that older people are more susceptible to COVID-19. Because of a range of factors, including how people with learning disabilities can be treated (or mistreated, or not treated) by health services[8], there are proportionally fewer people with learning disabilities in older age groups although (thankfully) the number of older people with learning disabilities has been increasing. For some groups of people with learning disabilities potential risk factors will be present either from birth or from an earlier age than the population generally, so younger people and those supporting them as well as older people should be getting the best support and healthcare.

There is also an emerging picture that more men than women are more likely to become more ill with COVID-19. A consistent international finding is that more men than women are identified with learning disabilities.

[Added 30/3/2020]. Finally, smoking appears to be associated with more serious consequences of COVID-19. Although good evidence on rates of smoking amongst people with learning disabilities is scarce, it appears that people with learning disabilities who are eligible for and using long-term social care support may be less likely to be smokers than the general population, whereas people with learning disabilities (including adolescents) who are less likely to be eligible for long-term social care support may be more likely to be smokers than the general population.

People with learning disabilities registered with GPs

From 2014/15, NHS Digital every year has been publishing information from around half of GP practices in England, comparing people with and without learning disabilities on what GPs record about people’s health and selected aspects of their treatment. Although geographical coverage is patchy, you can also get detailed information area by area[9]. Overall, it is important to say that this database is reporting that people with learning disabilities are 4 times more likely to die than people without learning disabilities of the same age and sex.

What does this database (and research, much of which is summarised by Public Health England here[10]) say about whether people with learning disabilities are more or less likely than other people to experience the risk factors associated with ‘vulnerability’ to COVID-19? Overall, the general pattern is that people with learning disabilities are more likely to experience a range of risk factors at younger ages than other people, but are less likely to be living long enough to experience risk factors or health conditions that are common amongst over-75s.

Respiratory conditions are obviously an important risk factor in relation to COVID-19. The GP database reports:

·         Asthma: overall 9.2% of people with learning disabilities vs 5.8% of other people, with asthma more common amongst people with learning disabilities in all age groups up to 64 years old.

·         Chronic Obstructive Pulmonary Disease (COPD): overall 1.2% of people with learning disabilities vs 1.8% of other people, but more common amongst people with learning disabilities in age groups 35-54 years.

It is absolutely crucial to note that respiratory diseases, particularly pneumonias including aspiration pneumonia, are possibly the leading cause of death for people with learning disabilities and are much more common amongst people with learning disabilities than amongst other people[11].

[Added 30/3/2020, after a prompt from Jane Bernal.] People with Down syndrome are more likely than people with learning disabilities generally to experience more serious consequences of respiratory infections.

One of the major risk factors for aspiration pneumonia is dysphagia (problems with swallowing), which is not on the government’s list of ‘vulnerabilities’ but is common amongst people with learning disabilities and increases with age. GP recording of dysphagia amongst people with learning disabilities is improving but still only stands at 5.8% of people, where research suggests a much higher rate of around 14%[12]. Related health issues that are not in the government list but are an issue for many people with learning disabilities are constipation (GPs report this for 13.1% of people with learning disabilities, but research suggests much higher rates of constipation, and unrecognised constipation can have fatal consequences) and Gastro-Oesophageal Reflux Disease (GPs report this for 9.8% of people with learning disabilities).

Another major set of risk factors concerns the heart and circulatory system. The GP database reports:

·         Heart failure: overall 1.0% of people with learning disabilities vs 1.0% of other people, but heart failure is more common in people with learning disabilities in all age groups up to age 74 years.

·         Coronary heart disease: overall 1.1% of people with learning disabilities vs 2.8% of other people, largely because CHD is far more common amongst older people.

·         Hypertension: overall 9.8% of people with learning disabilities vs 12.8% of other people, but hypertension is more common amongst people with learning disabilities aged 25-54 years.

·         Stroke or Transient Ischemic Attack: overall 1.6% of people with learning disabilities vs 1.6% of other people, but stroke or TIA is more common amongst people with learning disabilities of all ages up to age 74 years.

Again, circulatory diseases are a leading cause of death amongst people with learning disabilities[13].

A range of other ‘vulnerabilities’ including the following, as reported by the GP database:

·         Type 1 diabetes: overall 0.8% of people with learning disabilities vs 0.4% of other people, more common amongst people with learning disabilities up to the age of 74 years.

·         Non-Type 1 diabetes: overall 7.0% of people with learning disabilities vs 4.8% of other people, more common amongst people with learning disabilities at all ages.

·         Cancer: overall 1.6% of people with learning disabilities vs 2.8% of other people, but more common amongst people with learning disabilities at all ages up to age 44 years.

·         Chronic Kidney Disease: overall 2.9% of people with learning disabilities vs 3.0% of other people, but CKD is more common amongst people with learning disabilities from age 25 to 74 years.

·         Being seriously overweight: in the government guidelines a Body Mass Index of 40+ is stated as a ‘vulnerability’ factor. The GP database only reports on people with a BMI of 30+ - this reports 37.5% of people with learning disabilities with a BMI of 30+ vs 30.1% of other people, with these BMIs more common amongst people with learning disabilities at all ages up to 54 years.

Although definitions vary, it is clear that ‘multimorbidity’ (experiencing more than one long-term health condition) is much more common amongst people with learning disabilities, beginning at much earlier ages than the general population.

People with profound and multiple learning disabilities in England

Although there is much less evidence than there should be, it is clear that people with profound and multiple learning disabilities are much more likely to experience the risk factors for susceptibility to COVID-19 than other groups of people with learning disabilities. In England, this is estimated to be 10,969 children in schools[14] and 18,925 adults[15].

The kind of information I’ve described above from GPs is not available specifically for people with profound and multiple learning disabilities, and even international research evidence on the health of this group of people is lacking. A review of the international research evidence[16] could not always produce overall estimates of health conditions because the research evidence was too diverse, but it reports the following for people with profound and multiple learning disabilities:

·         21% of people with profound and multiple learning disabilities experience respiratory disease.

·         30% of people with profound and multiple learning disabilities experience dysphagia.

·         Much higher rates of cardiovascular health problems and hypertension.

Issues that are particularly important for people with profound and multiple learning disabilities, such as tube feeding and much higher rates of epilepsy[17] (which is much more common in people with learning disabilities generally compared to other people, with GPs reporting 17.3% of people with learning disabilities experiencing epilepsy compared to 0.6% of other people), are not listed as ‘vulnerability’ factors but are likely to be really important for this group of people.

COVID-19 and people with learning disabilities – redressing an injustice or making it worse?

The evidence is clear that people with learning disabilities are more likely to experience a range of health conditions associated with a greater likelihood of a more severe reaction to COVID-19 infection. Even when overall rates of a particular health condition are similar between people with and without learning disabilities, people with learning disabilities are more likely to be experiencing these conditions are earlier ages. There are also particular groups of people with learning disabilities at particularly high risk of having a poor reaction to COVID-19.

Extensive research also shows that people with learning disabilities, as a group, experience systematic inequities when it comes to health – both in experiencing the social and economic conditions likely to result in poorer health, and in the (non-)response of health services to people’s health needs[18]. Now, when it really matters, there is an opportunity to begin to redress this injustice. Is everything possible being done to support people, families and support services such that the risk of COVID-19 infection is as low as possible? And if people do contract COVID-19 is everything being done to ensure that people and families are properly informed and supported to make decisions, starting with the assumption that health services will do everything they can to treat people? I among many, many others are concerned that scarcity of health services (itself the consequence of political choices) is potentially being used, in the cloak of clinical prioritisation, as a rationale for further discrimination against ‘vulnerable’ groups, including people with learning disabilities. Time to step up and show we’re better than that.

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[1] https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

[2] https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

[3] https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015

[4] http://www.research.lancs.ac.uk/portal/en/publications/estimating-the-need-for-social-care-services-for-adults-with-disabilities-in-england-20122030(e694bcdf-2ea9-4968-93d6-0d2e44ff3bb7).html

[5] https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england

[6] https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england

[7] https://digital.nhs.uk/data-and-information/publications/statistical/quality-and-outcomes-framework-achievement-prevalence-and-exceptions-data/2018-19-pas

[8] http://www.bristol.ac.uk/cipold/

[9] https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2018-to-2019

[10] https://fingertips.phe.org.uk/profile/learning-disabilities

[11] https://www.researchgate.net/publication/320257634_Early_death_and_causes_of_death_of_people_with_intellectual_disabilities_A_systematic_review  

[12] https://fingertips.phe.org.uk/profile/learning-disabilities

[13] https://www.researchgate.net/publication/320257634_Early_death_and_causes_of_death_of_people_with_intellectual_disabilities_A_systematic_review  

[14] https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england

[15] https://eprints.lancs.ac.uk/id/eprint/26131/1/CeDR_2009-1_Adults_with_PMLD_in_England.pdf

[16] https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12296

[17] https://fingertips.phe.org.uk/profile/learning-disabilities

[18] http://www.instituteofhealthequity.org/resources-reports/a-fair-supportive-society-summary-report

http://www.bristol.ac.uk/cipold/

COVID-19, people with learning disabilities, and NICE Guideline 159 on critical care

Excuse me for this extremely hastily written blogpost - hope some people will find it useful.

NICE (the National Institute for Health and Clinical Excellence) has just produced a rapid guideline for health professionals on what to do about critical care for people with the COVID-19 coronavirus. Among other things, NICE write clinical guidelines that everyone in health services in England are supposed to follow, so a guideline on this is a big deal. Its basic premise is that there will be a shortage of critical care (intensive care) services in the face of the number of people with COVID-19 who would ordinarily use them, so the guideline is to help health professionals make decisions about who to admit to critical care or not. Horrible, horrible decisions for a health professional to have to make - although these decisions are having to be made due to a shortage of sufficient services and health professionals.

The guideline NG 159 is relatively short and is available here, and in this post I want to quickly outline some potential implications for people with learning disabilities if they get COVID-19 and need to go to hospital (of course, many people, even if they get COVID-19, won;t need hospital treatment and will recover).

The starting point of the guideline is that "On admission to hospital, assess all adults for frailty, irrespective of age and COVID-19 status. Consider comorbidities and underlying health conditions".

'Frailty' is an idea that has typically grown around older people generally and people with dementia specifically, where the purpose is to try and predict who will be more likely to experience things like hospitalisation and rapid deterioration in their health from a set of 'markers', although there is apparently little consensus between measures or markers of 'frailty'.

It is not clear to me (even if people coming to hospital with COVID-19 will be mainly older people) why frailty is the essential thing to assess people for - there are fundamental ethical issues here which others are much better placed than me to comment on.

In this more limited post, there is really no evidence that any frailty measure is applicable to adults across the age range, including people with learning disabilities. [And there no mention in the guideline on children - while the assumption may be that few children with COVID-19 will potentially need critical care the potential health impact on children with learning disabilities and multiple health conditions is not yet clear. Hospitals need to be ready and prepared for this eventuality].

And the consequences of the blanket application of a frailty measure in these circumstances for people with learning disabilities worry me greatly.

First, the scale that NICE says should be used is the Clinical Frailty Scale, developed for people with dementia, that has 9 levels (see below). This Scale strongly assumes that there is a progressive course of dementia, combining (in quite subjective ways) judgements of physical fitness, cognitive functioning, the kind of support people need, and physical health problems into these levels.

This is, to say the least, profoundly unhelpful when applied to any group of disabled people with long-term impairments and particularly unhelpful when applied to people with learning disabilities who by definition have some issues with learning certain types of things. For example, on this scale I think anyone with profound and multiple learning disabilities would at best be rated 7 (Severely Frail) on this scale. And perhaps pretty much any adult with learning disabilities who has jumped the eligibility hurdle for long-term adult social care support (around 150,000 people in England alone) - and maybe all children with severe or profound multiple learning difficulties with an EHCP (around 40,000 children in England) - would be rated at best as 5 (Mildly Frail)?

In these guidelines, what you score on this scale (being rated by health professionals not routinely working with people with learning disabilities, working in conditions of extreme pressure, when we know that mainstream hospitals are not routinely reasonably adjusted to provide equally effective healthcare for people with learning disabilities) really, really matters.

Section 2 of the guideline (Admission to critical care) is where the main work of the guideline is done. After completed and recording the Clinical Frailty Scale score, the health professional should "Discuss the risks, benefits and possible likely outcomes of the different treatment options with patients, families and carers using decision support tools (where available) so that they can make informed decisions about their treatment wherever possible)." Questions:
1) As far as I can see, none of the materials linked to are designed for use with people with learning disabilities, and there are no references to making reasonable adjustments to this process.
2) Given people's circumstances it is possible that a person with learning disabilities may be admitted to hospital without a member of their family allowed to be with them, and paid carers may be filling in and not know the person well.
3) Capacity is not even mentioned here.
4) The person is likely to be greatly distressed at this point.

Then, the critical care team will discuss whether to admit the person to critical care or not if...
"where the CFS score suggests the person is less frail (for example the score is less than 5) [the for example is doing a lot of work here], they are likely to benefit from critical care organ support and they want critical treatment, or..."
"the CFS score suggests the person is more frail (for example the score is 5 or more), there is uncertainty regarding the likely benefit of critical care organ support, and critical care advice is needed to help the decision about treatment".

People with learning disabilities are unlikely to come out of these discussions with the critical care team well, given the CFS predisposes people to be rated as being frail and the greater likelihood of people being acquiescent to suggestions put to them by health professionals in a position of authority at a time of great stress.

Then, if you get through that, health professionals should "Take into account the impact of underlying pathologies, comorbidities and severity of acute illness on the likelihood of critical care treatment achieving the desired outcome".

How will a health professional make this accounting? Well, if they're going on government guidance on social distancing for COVID-19 they will notice that people with learning disabilities are already listed as a 'chronic neurological condition' and therefore part of a group "who are at increased risk of severe illness from coronavirus (COVID-19)" and therefore should be "particularly stringent in following social distancing measures". Does this then mean that all people with learning disabilities by definition have an "underlying pathology"? And it is the case that various groups of people with learning disabilities are more likely to have relevant health conditions such as respiratory health problems, heart problems and diabetes. Will this tilt health professionals away from thinking that critical care treatment is likely to achieve the desired outcome for people with learning disabilities?

Assuming that this means you won't get critical care, what happens to you? The next step according to the guideline is to "Support non-critical healthcare professionals to discuss treatment plans with patients who would not benefit from critical care treatment or who do not wish to be admitted to critical care." Note that from an irrelevant assessment of frailty and an assessment of potential risk factors we are now at the point of apparent certainty about "patients who would not benefit from critical care treatment." And as I mentioned earlier, will people with learning disabilities be assertive enough in this situation to demand critical care for themselves?

Health professionals should also "Sensitively discuss a possible 'do not attempt cardiopulmonary resuscitation' decision (with all adults with capacity) and CFS score suggestive of increased frailty (for example of 5 or more)." There is no mention of what should happen with people without capacity, or of reasonably adjusted ways to discuss these issues with people.

Finally in Section 2, health professionals should "ensure that when treatment outside critical care is the agreed course of action, patients receive optimal care within the ward". What 'optimal care' consists of is not specified.

There is more to the guideline that I won't go into here, but the general direction of travel that stacks the deck against people with learning disabilities is reinforced and replicated throughout. This guideline is not fit for purpose for people with learning disabilities.


UPDATE: NICE have issued the following 'clarification' about this guideline.

This is welcome - it will be important to know what (if anything) the CFS will be replaced with. It is also vital to understand what NICE plans for other groups of disabled people (and in fact, anyone who isn't an older person). Most of my questions in the blogpost about how the guideline will operate in practice, and their implications for how people with learning disabilities are treated (or not) remain.

One more heave? Autistic people, people with learning disabilities and inpatient units (again)

As report after report documents the experiences of autistic people and people with learning disabilities in ‘specialist’ inpatient units across various parts of the UK, the policy response in England has gone down the route of a ‘taskforce’ for children and young people, and all adults having their ‘care’ reviewed in the next 12 months, with both of these processes overseen by independent chairs. As has been widely pointed out, the focus of both these initiatives on case reviews as a mechanism for getting people out of inpatient units is not new – various iterations of government and NHS England policies such as Transforming Care have had exactly the same focus for at least 8 years.

We also know that NHS England have already gone through at least one major push to move people out of inpatient units, in the lead-up to the ‘end’ of a/the Transforming Care programme in March 2019. In this blogpost I want to go through some of the statistics collected by NHS Digital to see what we can learn from this previous major push by NHS England – what happened, and what might the consequences be?

To begin with, let’s look at the overall numbers of autistic people and people with learning disabilities in specialist units over time. The graph below is taken directly from the report using Assuring Transformation data (collected from commissioners, which they can update retrospectively, and on a relatively restricted set of ‘specialist’ inpatient services compared to another dataset, the MHSDS) up to December 2019.

In this graph, the grey line shows the number of people who commissioners reported straight away were in inpatient units. This shows a very gradual decrease over time, with no apparent acceleration towards the ‘end’ of Transforming Care in March 2019. The blue line adds in people who commissioners reported were in inpatient units retrospectively (so someone in an inpatient unit in March 2019 might only be reported to NHS Digital in June 2019, bumping up the numbers for March 2019 later on). In the left-hand side of the graph, where enough time has passed for commissioners to hopefully report everyone, there is a consistent gap between the grey line and blue lines. Towards the extreme right-hand end of the graph it looks like there is an accelerating decrease in numbers, but I think that is because commissioners haven’t yet reported everyone they’re going to find retrospectively, so the number of people in the blue line for recent months will increase as more people are found/reported by commissioners.

What might we see if there was a concerted push to get people out of inpatient units? To start with, people in inpatient units should be having regular reviews (remember, this is the mechanism in the new announcements that is supposed to trigger people leaving inpatient units). The graph below shows the time since people’s last review for people in inpatient units, from March 2015 to September 2019. There is some evidence of a push on reviews in March 2019 (the end of Transforming Care), with more people having more recent reviews, but by September 2019 it looks like the time since last review is drifting back to its usual level.  

You can also see in the graph below that, over time, steadily more people in inpatient units have been the subject of Care and Treatment Reviews (CTRs), introduced to try and bring both commissioner and independent voices into the decision-making process about people leaving inpatient units, although again there be evidence of a slight drift backwards after March 2019.

 Are these reviews having an impact on people getting a planned date for transferring out of the inpatient unit they are in (bearing in mind that a transfer may be to another inpatient unit, which I’ll come to later). The graph below shows that after a real dip in 2016, over half of people in inpatient units had a planned transfer date, although that has again dipped back to under half in September 2019, six months after the end of Transforming Care.

If someone does have a planned date for a transfer out of an inpatient unit, how soon are they expected to move? The graph below shows the time to the planned transfer for people in inpatient units. I think there is real evidence here of a push towards shorter times to planned transfers in the two years before the end of Transforming Care in March 2019, although again there has been a drift backwards since. It’s also worth noting that this push seemed to have little impact on the proportion of people whose planned transfer was overdue  - this has stayed pretty steady over time.

So far we’ve evidence of a push happening towards the end of Transforming Care in terms of more recent reviews and CTRs and more people with shorter times to planned transfers, although some drift backwards once the foot was taken off the pedal. What do we know about how good the planning was for these planned transfers and whether they are likely to be successful? One thing we can look at is whether councils are aware of the person’s planned transfer. The graph below shows that over time fewer and fewer councils (less than half by September 2018) were aware of the person’s planned transfer, and also that by September 2019 commissioners didn’t even know if councils were aware or not for over 40% of people with a planned transfer.

Another marker of the quality of a transfer plan in the statistics is the range of people who have agreed a person’s transfer plan. As the graph below shows, over time the proportion of transfer plans that have been agreed by the person themselves, by a family member or carer, by an advocate, by the service provider’s clinical team, or by the service commissioner (!) has plummeted over time (with a particularly steep drop from September 2018 to March 2019).

So there was a push in terms of reviews and planned transfers, but some suggestion that these pushed transfer plans might be cutting corners. What was the impact of this push on the number of people actually moving out of inpatient units, and where were people going? The graph below shows the destinations of people transferred from an inpatient unit, in blocks of a year from October 2015 to September 2019. In terms of overall numbers the picture is positive, with more people year-on-year moving to community settings, particularly the family home ("with support", although many families report not getting the support they need). Overall, fewer people (although still 20% of all people transferred in 2018-19) were being ‘transferred’ directly to another inpatient unit or hospital.

If there are more people being transferred out of inpatient units, why are the overall numbers of people in inpatient units not changing very much? The graph below provides much of the answer – over time more and more autistic people and people with learning disabilities are going into inpatient units. Almost a quarter of these ‘admissions’ (22.4% in 2018-19) are actually people being moved directly from another inpatient unit or hospital. More than 1 in 10 (10.9% in 2018-19) people going into an inpatient unit had come out of one less than a year before, although the number of people being re-admitted is reducing over time. For two-thirds of people coming into an inpatient unit (66.7% in 2018-19) it is likely to be their first time.

Two final questions. First, did this push have any impact on the length of time people spend in inpatient units? The graph below shows the average length of time people have spent in their current inpatient unit, and also the average length of time people had spent continuously in some form of inpatient unit (including being transferred directly from one to another). As the graph shows, while the average amount of time people have spent in their current inpatient unit has dropped slightly (to 2 years 6 months in September 2019) the average amount of time people have spent continuously in inpatient units has not changed at all (5 years 5 months in September 2019), as a result of people being moved around the inpatient system. In September 2019, 12% of people had been in their current inpatient unit for 5 years or more and 36% of people had been continuously in inpatient units for 5 years or more.

The final question is whether this push had an impact on the number of people in inpatient units who, according to their care plans, didn’t need to be there? The short answer, according to the graph below, is no. For around four years, around 30% of people in inpatient units (28% in September 2019) are recorded in their care plans as not needing inpatient care, with the number of people experiencing delayed transfers of care slightly drifting upwards over time.

So what do I think are the lessons we can learn from the kind of ‘push’ that has already happened at least once, towards the end of Transforming Care in March 2019, and that policy announcements say are going to happen again?

1) Such a push can have an impact on reviews being done, and notional transfers being planned, although the system drifts back to its usual ways of working once the foot is taken off the pedal.

2) Such a push might cut corners when it comes to planning and organising sustainable transfers out of inpatient units that will result in people being well supported and moving towards a fulfilling life.

3) Such a push appears to have no impact on the number of people being moved around the inpatient service system, the lengths of time people are staying in inpatient services, or the number of people in inpatient services who according to their care plans don’t need to be there.

4) Such a push does result in more people moving out of inpatient units, although the sustainability of their living situations once out is unclear and a substantial proportion of people are being readmitted to inpatient units within a year of leaving.

5) Such a push has no impact on what appears to be increasing numbers of people being admitted to inpatient units, and little impact on the number of people in inpatient units as a whole.

Based on this evidence, the new initiatives announced in late 2019 are unlikely to have the transformative effect claimed for them.

Disability benefits statistics: update

I’ve been very remiss with blogposts, and due to a lack of time and headspace I’ve been providing updates on statistics relating to people with learning disabilities in very occasional tweet threads.

Rather than spend ages agonising about writing proper, considered blogposts, I thought over the next month or so I’d try and get some of those tweet threads into quick blogposts so at least the information will be in one place and people can refer to them if they wish to.

So, to kick off here is a very quick blogpost about disability benefit statistics, with figures mainly up to February 2019. All these figures are obtained from the excellent DWP Stat-Xplore online tool. I’m going to talk about three disability benefits here:

1) Disability Living Allowance. The Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs. Disability Living Allowance (except for those born before 9 April 1948 and those aged under 16 at the time of application) is being replaced by Personal Independence Payments. The DLA consists of two components which are assessed and paid separately, a Care Award (paid at higher, middle and lower rates) and a Mobility Award (paid at higher and lower rates).

The Department for Work and Pensions (DWP) provides quarterly information on Disability Living Allowance (DLA), that can be disaggregated for adults with ‘learning difficulties’ in England. The DWP definition of ‘learning difficulties’ includes ‘learning difficulties’’ (an old generic code still used for pre-2008 cases before more detailed sub-categories were introduced), ‘Down’s syndrome’, ‘Fragile X syndrome’, ‘learning disability – Other/type not known’, ‘Autism’, ‘Asperger syndrome’, and ‘Retts disorder’². This definition is broader than other government departments’ definitions of the population of people with learning disabilities.

2) Attendance Allowance (AA), which is paid to disabled people over the age of 65 to help with personal care. This can be paid at two rates to reflect the level of care required, and in the statistics uses the same broad definition of ‘learning difficulties’ as the DLA statistics.

3) Personal Independence Payment (PIP); a benefit for adults with sickness and/or disability replacing the DLA, but with some important differences. Information on the PIP is available on a monthly basis for adults with learning disabilities, under the category ‘Main Disabling Condition/Psychiatric Disorders/Learning Disability Global’, and for autistic people under the label ‘Main Disabling Condition/Psychiatric Disorders/Autistic Spectrum Disorders’.

In this blogpost I’m trying to get a sense of how many people with learning disabilities and autistic people (I’m assuming that the broader category of ‘learning difficulties’ is mainly these two groups of people) have been getting some form of disability benefit over time. To help with this, I’ve looked at four broad age groups: children and young people (age 0-17 for DLA); younger working age adults (age 18-44 for DLA; age 16-44 for PIP); older working age adults (age 45-64 for DLA and PIP); and older adults (age 65+ for DLA, PIP and AA). The graphs include people getting payment for the benefit concerned, and are either people with ‘learning difficulties’ (DLA and AA) or, separately, people with learning disabilities and autistic people (PIP).

What do we find? The first graph shows how many children and young people with ‘learning difficulties’ received DLA (the only one of these three benefits where children and young people are eligible), from May 2012 to January 2019. The graph shows a steady increase in the number of children and young people with ‘learning difficulties’ getting DLA, with if anything a faster rate of increase in recent years, up to 208,584 people in January 2019.

The next graph below shows information for younger working age adults (aged 16 or 18 to 44), from May 2012 to February 2019, and includes both the DLA and the introduction of the PIP. As more and more people transfer from DLA to PIP there is a rapid decrease in the number of younger working age adults with ‘learning difficulties’ getting the DLA, and similar rises in the number of people with learning disabilities and autistic people getting a PIP. The grey line in this graph shows the combined total of people getting one of these disability benefits. This shows that year-on-year increases in the number of people getting some form of disability benefit slowed down and then stalled from 2017 onwards. By February 2019 189,847 younger working age adults with learning difficulties, learning disabilities, or autistic younger working age adults, were getting either DLA or PIP.

 The third graph, below, has the same information for older working age adults with learning difficulties aged 45-64. This graph also shows a rapid decrease in the number of people getting DLA from 2012 to 2019, with a sharp rise in the number of people with learning disabilities getting PIP but relatively few autistic people getting PIP. The combined total for this age group shows a much slower rate of increase for people getting either disability benefit, with increases stalling by 2018. By February 2019 60,517 older working age adults with learning difficulties, learning disabilities, or autistic older working age adults, were getting either DLA or PIP.

The final graph has information on the number of older people with ‘learning difficulties’ (DLA, AA) or older people with learning disabilities or autistic people (PIP) getting one of these disability benefits. The number of older adults with learning difficulties getting AA is relatively small and has gradually declined from 2012 to 2019. As with older working age adults, sharp increases in the number of older people getting DLA is accompanied by a sharp increase in the number of older adults with learning disabilities getting PIP but relatively few older autistic adults getting PIP. Overall, the number of older adults with learning difficulties, learning disabilities or autistic older adults getting one of these disability benefits has steadily increased from 2012 to 2019, but the rate of increase has slowed over time. By February 2019 18,359 older adults with learning difficulties, learning disabilities, or autistic older adults, were getting either DLA, AA or PIP.

I’m very happy for others to make more informed interpretations of these statistics than me, and I’m very happy to people to tell me about errors I have made in putting together the information for this blogpost. From my limited understanding of the statistics in these graphs, a couple of things leap out at me:

1) The increasing numbers of children and young people with ‘learning difficulties’ getting DLA is in sharp contrast to the number of adults of all ages getting some form of disability benefit. Is this because autistic children are more likely to be recognised and deemed to be eligible for DLA? And what happens when these children and young people grow up and have to go through the process of transfer to PIP?

2) It looks to me like fewer adults of all ages are eligible for PIP than have been eligible for other disability benefits in the past, so previous increases in the number of adults getting some of disability benefit (which you would expect from population predictions of the number of adults with learning disabilities) have stalled in all adult age groups. It might be worth mentioning here that according to DWP statistics, since the introduction of PIP, 8.1% of PIP applications related to people with learning disabilities and 32.6% of PIP applications related to autistic people that have been ‘cleared’ by the DWP PIP process have been disallowed post-referral due to ‘failing’ the assessment.

3) Where are the middle-aged and older autistic people? Whereas identification might be more comprehensive and improving for children, young people, and younger working age autistic adults, identification of older autistic people (certainly to the point of being eligible for a disability benefit) does not seem to be improving at anything like the same rate.

Overall, if population predictions are correct there should be more people with learning disabilities and more autistic people of all ages over time becoming eligible for a disability benefit. The figures here suggest that while we are still seeing this for children and young people (where PIP does not apply), we are no longer seeing it for adults of any age. What are the consequences of this for all those people who should be getting a disability benefit to help them flourish, both now and in the future?

Social care statistics and adults with learning disabilities - 2018/19 update

For various reasons it’s been a long time since I’ve had the time and energy to blog – apologies (either for the length of time since the last one or for writing one now, depending on your preference). This morning I’m off for the kids’ half-term and they won’t get up until lunchtime, so I thought I’d treat myself (yes, I’m aware how that sounds…). NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England, and this blogpost updates previous posts to include information for 2018/19.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most information is collected only on people getting ‘long-term’ social care. Most of the information for 2018/19 can be found here and here.

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been 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. For most of these categories there is also equivalent information from 2009/10.

The first graph below show the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2018/19 (bearing in mind the change in data collection between 2013/14 and 2014/15), and also the number of adults aged 18-64 in residential or nursing care.

This graph shows that adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time, and is now the second most common vehicle for long-term social care support. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2018/19 they still represented 19% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total (including 15 people who were identified as receiving long-term social care in prison) 133,575 adults with learning disabilities aged 18-64 were getting long-term social care in 2018/19, an increase of 7.5% in the four years from 2014/15.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available), using the same vertical axis as the graph above for ease of comparison.

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to gradually increase over time while the number of adults getting council-commissioned community services only continues to decrease. The number of older adults with learning disabilities in both residential care and nursing care continues to increase, representing in 2018/19 39% of all older adults with learning disabilities getting long-term social care.

In total (including another 15 people who were identified as receiving long-term social care in prison) 17,045 adults with learning disabilities aged 65 or over were getting long-term social care in 2018/19, an increase of 17.0% in the four years from 2014/15.

It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. The graph below shows the units for residential and nursing care for adults with learning disabilities aged 18-64 (from 2009/10) and for older adults (from 2014/15). It is really important to remember that these costs (which should more property be termed fees) are not adjusted for inflation.

In 2018/19 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,523 per week, compared to the next most expensive £1,233 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,316 per week, compared to the next most expensive £917 per week for people needing support with memory and cognition. Residential care for adults with learning disabilities aged 65+ was an average £1,033 per week, compared to the next most expensive £626 per week for older people needing support with memory and cognition. Finally, nursing care for older adults with learning disabilities was an average £836 per week, compared to the next most expensive £697 per week for older people needing support with memory and cognition.

It is also extremely likely that more adults with learning disabilities could do with social care support than are currently getting it. Although there are no longer any national statistics that directly address this issue, there are a couple of ways to think about it.

First, the information I’ve quoted so far shows that even in the last five years the number of adults with learning disabilities getting social care support has continued to increase. However, the increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support according to population projections. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2019 there would be 169,551 adults with learning disabilities needing social care support, compared to the 150,620 adults actually getting long-term social care support in 2018/19.

Second, although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2018/19. In terms of what was happening in 2018/19, 3,300 adults with learning disabilities (95% of whom were aged 18-64) came to social services as new clients. Of these, 13% (430 people) were identified as having no needs and therefore requiring no services, and very few (10 people) were identified as self-funders. By far the most common response from social services was to signpost people to universal services or other forms of non-social care support (2,110 people; 64%). Relatively few people (160 people; 5%) went on to get some form of low level or short-term support from social care, with slightly more people (255 people; 8%) going on to get some form of long-term social care support. Very few (35 people; 1%) declined a service that was offered. Over time, there seems to have been a steady increase from 2014/15 to 2017/18 then a particularly sharp increase to 2018/19, almost wholly accounted for by signposting to universal services or other non-social care support. 

Different people I respect have different views on the desirability or otherwise of the patterns shown here – for some it shows social care busily trying to fend off people coming to them for help, for others it shows that social care services are getting better at finding ways to support people retain their independence as citizens without sucking them into the maw of potentially overbearing long-term social care services which people don’t need and might end up being actively unhelpful. Whatever the interpretation of this information, it does show a sharp increase in the number of adults with learning disabilities trying to get some form of social care support.

In terms of the living situations of adults with learning disabilities, from 2009/10 councils have provided a detailed breakdown on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – i.e. for almost everyone living with family. In 2018/19 this applied to 49,170 people, 37% of all working age adults with learning disabilities getting long-term social care, with numbers rising rapidly (up 10% in the four years from 2014/15). The number of working age adults in some form of supported accommodation, according to these figures, has been rising rapidly but seems to be stalling in 2018/19 at 29,170 people (22% of working age adults getting long-term social care support). The number of people in residential care, after a consistent decline over a number of years, again seems to have stalled in 2018/19 at 21,150 people (16%), while the relatively small number of working age adults with learning disabilities in nursing homes remains fairly static at 1,045 people (1%). The number of people in some other types of support, such as tenancies and shared lives arrangements, has fluctuated from 2014/15 to 2018/19 with few consistent upward or downward trends over time.

In 2017/18 I reported a small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. In 2018/19 this had reduced again to 1,195 people – it is unknown what this substantial fluctuation is about. And the figures reported by social services don’t include most adults with learning disabilities in inpatient services - councils only recorded 405 people in these places in 2018/19, with their reported numbers continuing to drop over time. This number is far fewer than the 2000-3500 number of people reported in NHS Digital statistics recorded by health commissioners or providers – whilst most of the people with learning disabilities in inpatient services will not be directly funded by social care these figures do cast considerable doubt on the reality of policy aspirations to pooled funding and the readiness and willingness of social care services to support people to come out of these places.

Finally, it is important to note that for 6,185 working age adults with learning disabilities getting long-term social support their living situation was unknown to the local authority providing the support – this number had been decreasing but increased again in 2018/19.

How much money are councils spending on social care services for adults with learning disabilities? The graph shows this gross expenditure from 2014/15 to 2018/19, broken down by age band and categories of spending, although it is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years.

A couple of observations. Overall, the amount of social care funding for adults with learning disabilities continues to increase in absolute terms, from £4.98 billion in 2014/15 to £5.82 billion in 2018/19, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.7%) is spent on long-term support rather than short-term support. Third, despite absolute increases in most categories of expenditure (not adjusted for inflation), in 2018/19 there were small absolute reductions in both short-term and long-term ‘other’ community social care support. Finally, social care spending on residential and nursing care for adults with learning disabilities still represents 35.8% of all social care expenditure on adults with learning disabilities.

I know this blogpost is turning into something of an epic (it might be a while before I find the time to post again) but there are two final important issues I want to quickly cover before I finish.

The first of these is variation across local authorities, otherwise known as the postcode lottery. Whatever you choose to look at in terms of social care for adults with learning disabilities, there is massive variation across local authorities in how many adults with learning disabilities they are supporting, what kind of support people are getting, and how much local authorities are spending. Two examples (these are using 2017/18 data, but the picture is the same every year I’ve looked at it) – the number of adults with learning disabilities getting long-term social care support and gross expenditure on social care for adults with learning disabilities. Because local authorities can be very different in how many people live in their area, I have converted these to rates per 100,000 local population.

In the graph below, each bar represents a local authority, arranged from lowest to highest. In the authorities to the left of the graph, they are providing long-term social care for around 200 adults with learning disabilities per 100,000 of everybody in the local adult population. Towards the right-hand end of the graph, this is getting up to 500 people per 100,000 local adult population or in a couple of extreme cases up to around 650 people per 100,000 local adult population.

The next graph has a similar format, but it’s about social care spending on long-term social care for adults with learning disabilities per 100,000 local population. Again, depending where you are living, your council could be spending three times as much per head on long-term social care for adults with learning disabilities than the council next door.

There are good reasons to expect some variation across local authorities in both the number of people with learning disabilities needing social care (things like area deprivation will make a difference) and therefore social care spending, but these variations seem much bigger than that.

The final thing I want to mention is the point that Neil Crowther has made in his recent synthesis review of evidence on deinstitutionalisation throughout Europe – that the statistics I’ve talked about here mainly report on the number of people using, and spending on, specialised services of various kinds. There is much less information about how people experience their lives, and whether people have the opportunity to exercise their rights and live their lives how they want. The final graph below is from the other set of social care statistics released yesterday, the Adult Social Care Survey. This is a major exercise conducted via local authorities every year to survey thousands of adults using long-term social care to gain exactly the kind of information that Neil discusses. The graph below shows the percentage of adults with learning disabilities getting long-term social care in the survey (at least 17,765 people) reporting on their quality of life, how satisfied they were with the services they were getting, how good their health was generally, and about if they felt anxious or depressed on the day. The graph also has comparative information from adults with physical support needs and adults with mental health needs who responded to the survey.

The survey is very carefully designed and conducted, including an easy-read version available to anyone who wants it. I think this graph shows that there are unavoidable limitations to conducting a survey in this way to get this kind of information. First, people with learning disabilities report everything as being much better (this is true across pretty much all the questions in the survey) than other people, which I can’t help thinking is because far more people with learning disabilities get help to complete the survey than other groups. For example, 47.3% of people with learning disabilities completing the survey had help from a care worker, compared to 15.8% of people with physical support needs and 35.2% of people with mental health support needs. Second, for the most part levels of satisfaction etc are pretty high and are not changing much over time. There is a long strand of research suggesting that people adapt to their circumstances, even if their circumstances don’t look great to an outsider, and I am worried that using high levels of satisfaction as the most important indicator of ‘success’ will hide poor (or absent) support and the constrained lives that many people may be living.

I hope that this blogpost is useful in giving an overview of the latest social care statistics as they relate to adults with learning disabilities. Apologies for its epic length – at least I can guarantee that there won’t be another one coming along for a while!