Monday, 30 March 2020

Health condition does not equal Vulnerability does not equal Need for Support

Sorry - blog overload here. This will be a quick one. Again, because the statistics I know how to find more quickly are about people with learning disabilities, this is what I will focus on here. But, as Katie Clarke (@katietraining) has pointed out very forcefully, these are not issues specific to people with learning disabilities, with some nuanced differences they will apply to many groups of disabled people in similar situations. A collective response and push that unites people is most likely to make a difference.

As discussed in my previous blogpost, the government guidance on social distancing defines groups at 'increased risk of severe illness from COVID-19' in terms of age (70 or older), a set of individual health conditions, being pregnant, and/or a 'chronic neurological condition' where learning disability is specified as one of these conditions. There is also government guidance on 'shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19' ('shielding' involves at least 12 weeks of rigorous self-isolation) - people in this group are defined by a series of discrete medical/health conditions.

What do I think some of the consequences are of this for people with learning disabilities?
1) Although people with learning disabilities are more likely to be experiencing some of the health conditions associated with 'vulnerability', placing 1.1 million people with learning disabilities in England into a 'vulnerable' group in a blanket sense rather than on the basis of health conditions that people may have seems excessive.
2) Defining 'vulnerability' and 'extreme vulnerability' in terms of a set of individual medical conditions means that many people with learning disabilities with multiple health conditions (none of which individually are on the list) and need for 24-hour care support do not meet this 'extreme vulnerability' threshold while actually being at substantial risk in terms of the consequences of COVID-19.

Why does defining 'vulnerability' in this way matter?
1) Given the consequences of emerging guidelines about how disabled people may be treated by hospital services if they have COVID-19, many people are worried about identifying themselves officially as 'vulnerable' or 'extremely vulnerable'.
2) Being defined as 'vulnerable' in the government strategy may a factor that hinders people with learning disabilities from volunteering and helping others, which many people want to do and are in an excellent position to do.
3) To get 'extra support' if you are in self-isolation, you need to register with the government as a 'clinically extremely vulnerable person' (although to be honest many people will be trying to get support from their local communities to avoid their names being on such a register). And as I've outlined above, many people with learning disabilities who need this 'extra support', even on health grounds, will not reach the medically defined threshold for getting it.

I think the issue of who needs 'extra support' (or some help from other people - which we all do, all the time, in different ways) needs to be decoupled from whether a person has one or more specific medical conditions. Just a quick look at the range of living situations that people with learning disabilities are living in suggests that many people might want some different help (and might want to make a contribution), as the routines of daily life and connections with other people have changed so radically and many people with learning disabilities may for financial and being controlled reasons not have the kind of access to technology to connect regularly with other people and the world in general. Many families of people with multiple health conditions are working flat-out in caring for their family member, with diminishing and changing support teams as COVID-19 hits, while worrying about what will happen to their direct payments and other suspended rights to support when the Coronavirus Bill takes effect.

For example, just looking at the number of adults with learning disabilities getting long-term adult social care gives a sense of how many people and families might need 'extra support' that may not be due to a medical condition but absolutely needed to help people through while reducing the risk of a person getting COVID-19 in the first place. In 2018/19, well over a third (37%; 49,170 people) of all adults aged 18-64 with learning disabilities in England were living with their families. Almost a quarter of people (22%; 29,170 people) were in some form of supported accommodation and more people were in tenancies of various forms, where social care support may be limited anyway and particularly disrupted at the moment. Only 16% of working age adults with learning disabilities (21,150 people) getting long-term social care were living in residential care, which seems to be the main focus of government social care strategy concerning COVID-19. And this is not including the 17,045 adults with learning disabilities aged 65 or over getting some form of long-term social care, the likely much larger numbers of adults with learning disabilities not recognised as such by health or social care, the almost 70,000 children with learning disabilities in school, or the more than 30,000 children with learning disabilities who are looked-after children.

Within all these groups of people (and for most people, their families too), and for many more groups, there will be many people who whom 'extra support' will be essential to help people get through. I can't emphasise enough that a centralised state response to all these people is not necessary or even desirable - there are so many good local initiatives that are in a better position to include people. But people and families need urgent support now, that isn't dependent on reaching a 'medical' threshold, and that works with individuals to support people with what they need in ways that are flexible, anti-bureaucratic, reliable and reassuring. Health condition does not equal vulnerability does not equal need for support.

Saturday, 28 March 2020

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.







Monday, 23 March 2020

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.




Thursday, 23 January 2020

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.

Friday, 17 January 2020

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?