One December 18th 2020 the UK National Institute for Health and Clinical Excellence (NICE) published its guidance on managing the long-term effects of COVID-19. (here) On re-reading it, they are in reality suggesting that everyone should have access to “integrated, multidisciplinary rehabilitation services“. They also state (correctly) that one cannot know who has actually had Covid-19, and that any troublesome symptoms may be related to Covid-19 infection, and that all symptoms must be taken seriously (it is sad but true that they need to say that), so really they are saying that any person with troublesome symptoms needs to be seen by an expert (note I am not saying specialist) rehabilitation service. Thus we should be pushing hard for this now – today. This post explores this issue a bit more. It was precipitated by a radio interview stating that people could not access services because the clinician seen did not believe the report of the patient. I will start from that point.
“They don’t believe me; they think I am making it up or imagining it.” Comments like this are frequently reported in newspapers, magazines and on radio by people who have problems after Covid-19. Although getting much publicity now, similar comments have been made, frequently, for many years by people with chronic fatigue syndrome, functional neurological disorders, fibromyalgia and other syndromes for which there is no identifiable causative disease. People with Covid-19 are just the latest in a long line. The number of people presenting, and the high profile to the pandemic may lead to a better understanding of this type of disorder and, more importantly, a more appropriate response in the health services and by healthcare professionals.
Why are patient reports discounted?
The explanation lies in the biomedical model of illness. The primary assumption made in this model is that every illness is caused by a disease, and the word disease in this model refers to a structural abnormality with a part of the body, otherwise referred to as pathology.
If this is taken as being axiomatic (i.e. is always true), then a difficulty inevitably arises when there is no demonstrable abnormality within the body. This might be extended to the absence of evidence that there ever has been any abnormality.
A slight variation on this problem is one on attribution. It may be that the patient’s experiences are not considered attributable to any known pathology. Someone who has known arthritis of the right knee who then presented with palpitations and shortness of breath could not have those symptoms attributed to the knee disease.
The faulty logic used by the by the healthcare system and some professionals is as follows:
- you tell me you have problems A, B, and C,
- I can find no evidence of any disease that causes people to have those problems,
- Therefore you are not having those problems.
I am painting a caricature of the healthcare professional – to an extent – but I do think that many people find it difficult to understand how someone can possibly have symptoms and problems that are normally associated with disease, and yet not have any disease. However careful they are in talking to the patient, it is likely that this difficulty shows, and is taken as disbelief.
The second reason the problem arises is that both the healthcare professional and, usually, the patient believe that any illness must have a specific, single ’cause’. Both probably think that single cause is a disease. And when no disease can be found, the professional often fails to give a credible explanation or, equally likely, the patient does not accept the explanation offered.
The solution lies in understanding and accepting the following:
- What a patient tell you is always true; it is what the patient has noticed and is experiencing;
- All symptoms and other illness problems are multi-factorial, in that many factors will influence their nature and severity;
- The process of recovery after an acute illness is not always quick, or uniform in its progess, and convalescence and recovery is part of many illnesses;
- Experiencing symptoms, and having illness without any known, demonstrable disease is common.
It is also important to emphasise that there are two aspects to the disbelief. The first, already considered, is a matter of believing the patient. However even this can be difficult for some people (both patients and professionals). A common example is the issue of ‘real pain’. I frequently hear professionals say words such as “Yes, I know that the patient has pain from [depression, work stress, anxiety about money etc], but it is not real pain“. What they mean, and should say, is that “This patient’s pain does not arise from tissue damage, but from his marriage breaking up, and the need to work overtime to pay off his debts, and his recourse to alcohol to reduce anxiety.“
The second is one of attribution or interpretation. The problem here is that the patient interprets the failure of the healthcare professional to accept their (the patient’s) attribution (usually to a disease) as being a rejection of their experience and problems, rather than as an alternative diagnosis.
The first step is to undertake a holistic assessment, based on the biopsychosocial model of illness, with particular focus on collecting information about:
- all the experiences and problems a patient has, in their own words;
- how they interpret these and what their beliefs are;
- the history of the development of the illness, including past medical illnesses;
- the social situation – work, family, finance etc.
In more complex cases, this assessment is likely to require several different professions.
The clinician or clinical team should then discuss, with the patient, their formulation and the areas of doubt and uncertainty that exist, allowing the patient to disagree, ask questions, and offer alternative formulations.
The NICE guidance
The NICE guidance states in paragraph 2.1 that patients more than four weeks after “suspected or confirmed Covid-19” should be assessed using “a holistic, person-centred approach. Include a comprehensive clinical history and appropriate examination that involves assessing physical, cognitive, psychological and psychiatric symptoms, as well as functional abilities.“. The guideline goes on to expand on that but it does not specify that an expert rehabilitation service would be the service most likely to be able to undertake this.
It then says, in paragraph 4.1 “After the holistic assessment, use shared decision making to discuss and agree with the person (and their family or carers, if appropriate) what support and rehabilitation they need and how this will be provided.“. Again, the guidance fails to make a most obvious point. Only an expert rehabilitation service can actually provide information on what “support and rehabilitation they need“. One would not ask a non-surgeon to discuss and recommend the surgery a person needed, nor would you ask a non-oncologist to recommend the chemotherapy or radiotherapy someone might need for their cancer, so why does NICE suggest it appropriate to ask a non-expert to say what rehabilitation they might need.
Later they discuss service organisation, and in paragraph 8.1 they say “Provide access to multidisciplinary services (these could be ‘one-stop’ clinics) for assessing physical and mental health symptoms and carrying out further tests and investigations. They should be led by a doctor with relevant skills and experience and appropriate specialist support, taking into account the variety of presenting symptoms.”
However NICE clearly believe that these multidisciplinary services are separate from rehabilitation because in paragraph 8.2 they say “Provide integrated, multidisciplinary rehabilitation services, based on local need and resources. Healthcare professionals should have a range of specialist skills, with expertise in treating fatigue and respiratory symptoms (including breathlessness). Additional expertise may be needed depending on the age and symptoms of the person.“
My interpretation of this set of recommendations is that NICE have no clear understanding of rehabilitation. Despite their recommendations about holistic assessment, which are quite sensible, and their recommendations about a range of interventions, which are also reasonable, they clearly consider rehabilitation much as they consider any drug treatment – something that is prescribed or recommended – without appreciating that expertise is needed to decide on the formulation of the situation and what is most appropriate.
A second feature of the guidance also reveals their failure to move away from the biomedical model of illness, with its emphasis on specific single diseases and syndromes, and single causes.
This fixation on specific single diagnoses and implied single causes is most obvious in relation to the label, Post-COVID-19 syndrome. The guidance refers in many places to the Post-COVID-19 syndrome. It is defined as “Signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.“
However, because clearly the 12-week delay before the syndrome can be diagnosed does not reflect clinical reality, they additionally define Long COVID as a label (or diagnosis?) for patient problems between four weeks and 12 weeks: “In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).” No diagnostic label is given to earlier symptoms.
Then, at the end, they set out research recommendations for research into risk factors for, interventions for, and prevalence of “post-COVID-19 syndrome” as if it is a single entity or phenomenon. This is in keeping with their approach to other syndromes such as chronic fatigue syndrome and fibromyalgia. NICE seem unable to recognise that these syndromes have no independent reality, and that the syndrome of each person will differ from the syndromes of other people who nevertheless have prolonged problems after Covid-19.
In summary, the details of the NICE guidance are (reasonably) sound. Unfortunately they have used a flawed model of illness, the biomedical model, and they write (and think) as if there are specific syndromes, each of which have a specific single explanation. They completely fail to acknowledge that the diagnostic label attached (post-COVID-19 syndrome in this case) includes a very heterogenous group of patients, each patient having their own combination of problems and needs. NICE also bases its guidance on a misunderstanding of rehabilitation – what an expert rehabilitation is, and what it does – and while defining the service needed, do not recognise that a service with the characteristics outlined already exists.
Rehabilitation services in the UK can and should capitalise of the recommendation made in this guidance, despite the failure of the guidance to give explicit recommendations for the involvement of expert rehabilitation services.
We should draw attention to paragraphs 2.1, 4.1, 8.1 and 8.2 and point out that they are inextricably linked and that each depends upon the others. Patients need to receive an effective (sufficiently expert to make few wrong decisions) and efficient (reducing onward referral and duplication) service as suggested in the NICE guidance. For this to occur, the guidance needs to be implemented through ensuring that all patients with ongoing problems causing concern to the patient areseen in an expert rehabilitation clinic, within an expert rehabilitation service.
Specialist Covid clinic, or not?
This has to be a politically-based decision, and while the money is focused on developing ‘specialist’ Covid clinics, then of course we should badge them that way. But there are some very important points to keep in mind.
Selection of patients, or not?
As the NICE guidance acknowledges – implicitly, not explicitly – it is not possible to prove or know whether of not someone has had Covid-19. It is also not possible, on any evidence-based clinical grounds, to identify individual symptoms or clusters of symptoms that define a condition as being unequivocally post-Covid or not post-Covid.
Therefore all attempts to impose invalid selection criteria on referral and acceptance should be resisted. If the patient, or anyone else, believes or suspects that the current problems have some connection with Covid-19, they should attend the clinic. Anything else is unfair and not based on better evidence.
Process special, or not?
As I have pointed out (here), there is nothing about patients who present after Covid-19 that is not also applicable to many other patients seen in rehabilitation services – except the association with Covid-19. Many other patients have, between them, a similar ranges of possible areas of tissue damage and dysfunction, a similar range of symptoms, a similar range of severities which are only weakly linked to measures of disease severity, and a similar range of uncertainty about prognosis. Moreover the range of potentially effective interventions is similar.
Therefore the process should be much as outlined in the NICE guidance: a full, multi-professional assessment, a formulation, and a person-centred plan with the plan and decisions being made in full collaboration and discussion with the patient. As described here.
Some realities to acknowledge.
It is quite predictable that a proportion of people attending and being treated will not have had Covid-19. For example, some will have had problems from before 2020, though they may have worsened.
It is also quite predictable that some of the patients could equally have problems that could easily fit into other similar diagnostic groups that are defined simply be symptom clusters – post-traumatic stress disorder, chronic pain syndrome, chronic fatigue syndrome, chronic anxiety etc. Many of the patients seen in a post-Covid clinic will differ little from patients seen in other rehabilitation clinics.
The service for people presenting with post-Covid symptoms should not reallocate patients into another equally vaguely defined, and equally difficult to prove diagnostic group. Each patient’s problems should be analysed and managed as they are. If some specific intervention is provided by another service, it should be used if possible without ‘playing the game’ of a new diagnosis. As NICE guidance recognises, individual patients are likely to need a variety of different interventions and, given the present disintegrated nature of rehabilitation services (see here), this will mean referral to other services and collaborative working.
Nonetheless, the patient should retain the post-Covid label because (a) that is what they believe, (b) all labeling of symptom clusters lacking obvious verifiable disease is invalid, (c) the patient needs continuing contact with one ‘lead’ service which will be the post-Covid rehabilitation service, and (d) the central need is to provide each patient with the bundle of treatments they need, not to fit them into arbitrary (and invalid) diagnostic groups.
In other words, we should move to a situation where services say, “we are good at helping these problems that a patient might have, and we will help the patient in collaboration with the other services they need” rather than saying “we only help patients with this diagnostic label“. The post-Covid service should remain the lead service.
The NICE guidance has implicitly recommended that all people with problems after Covid-19 need to be seen in expert rehabilitation services. It is likely that money and resources will support development of such services, labelled as post-Covid services. The absence of any valid diagnostic test or criteria means that there can be no selection criteria. The problems seen will all be familiar to expert rehabilitation services, and most individual problems will already have managements that are more-or-less effective, though some may be provided by services outside the rehabilitation services. Patients should be referred on to other services as needed to access help with specific identified problems, while retaining their ‘post-Covid-19’ label, and the expert rehabilitation service should retain lead responsibility. Once established, it will become a much fuller rehabilitation service which can continue when (!) Covid-19 is no longer so common.