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.