Medical services responded rapidly to the very obvious, severe acute challenge of increasing numbers of people severely ill with Covid-19. The challenge to rehabilitation services is likely to be ten times as big, given that long-covid arises after less severe acute illness as well as after severe illness. Yet, despite the longer lead time which should allow preparation, there is virtually no forward planning. Why not?
A charitable person would say that health services are so overwhelmed that there is no spare resource (time, people etc) to give even a brief thought to rehabilitation.
Others, looking back at the history of rehabilitation, would say that this is what always happens. The excuses vary, but all arise from a much lower level of public concern about disability than about death.
Winston Churchill, who our current first minister wishes to emulate, said “Those who fail to learn from history are doomed to repeat it.“. I will help Mr Johnson (and his colleague, Mr Hancock) by setting out how we can avoid the slowly approaching but hugely threatening epidemic of long-covid.
I will start by setting out some axioms that applied to the acute phase, and apply to the rehabilitation phases. I will then suggest that, just as happened in acute medical services, we should immediately, and without further bureaucratic ado, reorganise services into a single rehabilitation service, just as medical services formed a single acute medical service spanning specialities, professions and organisations (including social services, often forgotten).
The main difference is that the reorganised service will continue to see other people needing rehabilitation; sadly but inevitably, most other acute services were severely curtailed.
Axiom 1. Covid-19 has no unique features.
There are no clinical features of Covid-19 in either the acute or the long-term phases that render it unique. Indeed, the NHS has managed the acute phase so well precisely because patients with this type of problem had previously been seen. The only unique feature is the sheer number of patients. The individual features, the combinations of problems, the differences in severity seen, the variation between patients, both in their acute phase and in their recovery phase, are all seen in many other illnesses.
Axiom 2. Long-term sequelae are not unique.
Long-term problems are commonly seen after many acute illnesses. Specifically, the long-term consequences of severe illness and immobilisation are well known. Further, in many conditions the recovery phase can last many months, sometimes two or three years, before it is either complete or stops.
Axiom 3. The dissociation between acute and long-term severity is common.
The relationship between the severity of the acute illness and the subsequent long-term problems is weak in many conditions. This is particularly seen after trauma, notably head injury, but is also seen in many other conditions. While some of the factors underlying this variability may be known in some instances, in general it is not known why this variability arises. But it does, and Covid-19 is no different.
Axiom 4. Convalescence is the forgotten phase.
Convalescence, “the time recovering from an illness or medical treatment” (OED), was an acknowledged phase of many illnesses 50 years ago. Patients still pass through this phase. Many patients need simply to recover their fitness, endurance and stamina naturally, increasing the amount they do as they recover. Sports men and women are well aware of the need to allow recovery to occur. An expectation of a rapid recovery after acute illness leads to the perception that recovery is abnormal. However, the time it takes to recover is long, particularly after a prolonged time immobile, in people who were not fit, and in people who are aged over 60 – 70 years.
From these axioms, I conclude that a service is needed that will monitor change and recovery, reassuring people when it is progressing satisfactorily, advising people how to progress their activities, and intervening when needed to increase the speed or extent of recovery.
Its main activities will be:
- assessing people, to check that there are no specific problems needing investigation, in case they are arising from an unrelated cause or a specific unrecognised complication from covid (e.g. cardiac damage);
- educating patients, particularly about the nature and cause(s) of their problems, realistic expectations, and about self-management of their own illness;
- education their family (people closest to them) about the same matters;
- providing specific interventions, tailored to the person’s needs if or when these are needed. These will cover a huge range of interventions (as is common in all rehabilitation);
- arranging care and support, if needed.
In the acute crisis, it was rapidly recognised that many clinicians working in many different services and specialities could, more-or-less easily, be educated rapidly to help manage patients.
There are very many clinicians with expertise in areas of rehabilitation scattered throughout many services in many organisations, as illustrated in this figure. This patchwork lacks any coherent basis, and has evolved locally in most areas driven by perceived need, enthusiastic individuals, political pressures, and (sometimes) actual clinical need.
The health service needs to react as it did to the acute medical needs. Now, immediately, it needs to reorganise. Not without any thought, but bypassing the usual cumbersome processes and procedures. In contrast to the acute crisis, this crisis will affect many organisations outside acute health services: mental health services (already hugely affected through indirect harm to people without Covid-19); social services, employment services, voluntary sector services, education services etc.
Re-organisation needs as its goal the formation of a single rehabilitation services with:
- its own separate budget, and the freedom to move financial resources around between different parts of the rehabilitation service according to need;
- all staff being employed by the service, who can allocate their work according to the need at the time;
- the expectation that it will be involved with patients needing their expertise in any and all setting from intensive care to end-of-life palliative care, especially including nursing homes;
- protocols to ensure and, more importantly, allow collaborative working with other services – acute medical and surgical services, mental health services, palliative care services, social services (all aspects) etc;
- a contracting system that does not specify particular interventions, but focuses on rehabilitation as a multi-disciplinary team activity with a wide range of possible interventions.
The outline goal is illustrated here and here, and is set out in much more detail with fuller explanation and justification here and here.