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.
Monday 30 March 2020
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.
[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.
[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.
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.
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