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Rehabilitation Matters

About all rehabilitation

‘Specialist’ rehabilitation services

The word, specialist, when preceding rehabilitation, concerns me. The natural corollary of adding the adjective is that there must be some other type of rehabilitation. What is that type? I will explore four aspects of specialisation (1-4), consider why the word is used (5), and then draw two conclusions (6, 7). The structure of this blog is given below; clicking on ‘here‘ takes you to directly to a part.

  1. specialist v non-specialist rehabilitation. here.
  2. specialist within rehabilitation. here.
  3. condition-specific specialisation. here.
  4. commissioning definition of specialist. here
  5. why else is specialised used? here.
  6. develop definition of rehabilitation service. here.
  7. a unitary service, with specialist expertise within it. here

Specialist v non-specialist rehabilitation.

The implication here is that there are two classes of rehabilitation. The way that the word, ‘specialist’ is used in the UK, generally differentiates in-patient rehabilitation services with medical input as being specialist, from (generally) other community-based or community hospital-based services which rarely have input from a doctor trained in rehabilitation input. By association, it also implies that patients seen outside the specialist service have less complex, or possibly less severe problems.

I think that this distinction is not based on evidence.

Rehabilitation, as a service, involves a multi-disciplinary team. A single professional, of any profession, cannot be classified as delivering rehabilitation if he or she works in isolation. Team-work, which means working as part of a defined team, is a central characteristic of effective rehabilitation. The multi-disciplinary team should include all professions needed to diagnose and manage the patient’s problems. This includes medical input, ideally from a doctor with expertise in rehabilitation.

A rehabilitation service takes a holistic approach to every patient, meaning taking into account all the different factors that might be causing or exacerbating the problems, and considering interventions across the whole of the biopsychosocial model. There is no reason for believing that patients in hospital have problems that are more complex than out-patients. The intellectual demands on the rehabilitation service, when assessing and formulating the situation, are the same in almost all services.

One might argue that inpatients have more complex treatment needs, but this is to conflate intensity with complexity. In many ways delivering treatment outside an inpatient unit is more complex, because of the much more varied contexts faced – the patient’s home, their family, the lack of some equipment and so on.

It is true that the care needs of inpatients are often greater, but patients with equally great care needs may be see in nursing homes and in their own homes.

So I conclude that the distinction between rehabilitation services on the basis of the expertise that they have and need is not logical. They have different types of expertise, but neither is more or less important or valuable.

Specialist within rehabilitation

The implication here is that a rehabilitation service has more expertise in some part of rehabilitation, such as the use of assistive technology, than is other aspects, such as managing challenging behaviour. It is almost self-evident that individual professionals, and individual teams will be more expert at some things rather than other things.

However, it is important to consider this a bit further.

Many rehabilitation services have, within the service, people or teams who have more expertise in one thing that other people within the service. For example, some neurological rehabilitation services may have someone who knows more about cerebral palsy in adults, or post-polio syndrome, or the diagnosis and management of writer’s cramp and dystonia. But this person uses their expertise in the context of the whole team. The majority of the patient’s needs will be met by team members without the extra expertise. The person with the expertise will, when needed, give advice and input to the rest of the team.

The service may gain a reputation as being expert in a condition, and indeed have that expertise, but this does not make the service uniquely and solely specialist in that condition.

More generally, teams with whole-team expertise in something are often placed within a larger service. In Oxford, the amputee rehabilitation team was part of the Oxford Centre for Enablement service until it was removed (irrationally, for political reasons). The whole service included people expert in assistive technology, acute and long-term neurology, out-patient, some out-reach services, chronic pain and so on.

Was the Oxford Centre for Enablement specialist, or not? And if so, what in?

I conclude that the adjective, specialist, when place before rehabilitation is not accurate in showing its expertise. If it truly only has one area of expertise, then it should be describes as ‘a rehabilitation service specialised in ….’. More generally, rehabilitation services should describe themselves as being ‘rehabilitation services with particular expertise (or interest) in … a variety of things.’

Condition-specific rehabilitation

A third use of the term, specialist, is to further qualify it with a condition. The current example is a ‘specialist long-Covid (rehabilitation) service’. The implication is that the service will only see people who have the named condition; the other implication is that other services will not be competent at managing the condition, and that all patients with the condition should go to the specialist service.

This use of the term raises many important concerns about equity and the use of resources, categorising patients, and the absence of services for some people. Services that are for particular conditions generally have more resources given to them than for ‘generalist’ services. They will usually have a patient-group associated with them, a group with power able to advocate on their behalf. The patient-group might even be able to fund and publish research showing the considerable needs of patients with the condition.

This usually leads to an allocation of resources that is not based on the needs of individual patients. A patient within the specialist service with relatively few needs may have them satisfied, while patients with greater need but not having the specific condition may get nothing. It particularly disadvantages people with rare or ‘unpopular’ conditions.

Moreover, at a smaller level it might mean that a clinician with a particular expertise working in a service is not ‘allowed’ to see patients with other conditions needing his or her expertise, even if he or she has the capacity to see such patients.

Given the very small number of professionals available, and the large number of conditions using for ‘specialist’ services, this is a real problem For example people suggest services solely for patients with stroke, traumatic brain injury, Parkinson’s disease, multiple sclerosis, functional neurological disorders, chronic fatigue syndrome, long Covid, ankylosing spondylitis, children moving into adulthood, motor neurone disease – the list is endless.

Much of the pressure to have ‘specialist’ rehabilitation services for named conditions arises from the (shameful) inadequacy of rehabilitation services. People with a condition want to ensure that they get rehabilitation. Rather than campaigning for better rehabilitation services, they campaign for condition-specific services.

A further problem arises in categorising patients. Two examples illustrate this.

There are, or were, services for people with ‘acquired brain injury’. It is not always easy to be certain about whether someone has any specific disease of or damage within the brain. Leaving that uncertainty aside, it is not possible to know what is or is not included as acquired nor is it clear what is or is not included by the term injury. I have spent hours in funding discussions wasting time on these words, at great expense, when no-one doubted the patient’s need but, equally, no-one wanted their budget to pick up the expense.

The difficulties in deciding who might or might not be seen within a long Covid specialist service are already becoming clear, and the NICE guidance just published will fuel arguments about this. More generally, any service ‘specialised’ in a syndrome with no definite pathological basis that can be used to define a patient unequivocally will lead to arguments.

I conclude, as I have written elsewhere, that rehabilitation services specialised in particular conditions should not be promoted. Most of the expertise needed by most patients is generic across many conditions and, in as far as specific expertise in a condition is needed (and it certainly will be needed), then having one or more people within a rehabilitation service will meet that need. Condition-specific service waste expertise and resources, and disadvantage many people.

Commissioning definition

A fourth complication, in the UK at least, concerns those who fund healthcare services, and the definitions they use to determine what they will or will not fund. The NHS funds ‘specialised services’ which are defined thus: “Specialised services support people with a range of rare and complex conditions. They often involve treatments provided to patients with rare cancers, genetic disorders or complex medical or surgical conditions.” 

The NHS commissions ‘specialist rehabilitation’ (at present) and the description can be found here. The document says commissioning concerns “Specialised Rehabilitation for patients with highly complex needs. It concerns the tertiary and specialised rehabilitation for patients as opposed to secondary or local community rehabilitation.” and then says that “Specialist rehabilitation is delivered by a multi-professional team who have undergone recognised specialist training in rehabilitation, led /supported by a consultant trained and accredited in rehabilitation medicine (RM) or neuropsychiatry in the case of cognitive / behavioural rehabilitation(2). Services are identified on the basis of complexity of their caseload.” and, yet further on it says “‘Tertiary specialised’ rehabilitation services (Level 1) are high cost / low volume services, which provide for patients with highly complex rehabilitation needs following illness or injury, that are beyond the scope of their local general and specialist services.”

Clearly the people writing this (in 2013) wanted to hedge their bets, and have a way out, because they have included definitions covering:

  • how rare a condition is;
  • how complex a condition without explaining how complexity is measured;
  • the nature of the service providing the service:
    • the multi-disciplinary team is involved;
    • high cost and low volume of service.

The (sad) reality is that commissioning of specialist services really translates into paying for expensive services, and it is not directly related to having particular expertise in any other way. Nevertheless, the minimising of the expertise of other services is stark in the phrase ” … specialised rehabilitation for patients as opposed to secondary or local community rehabilitation.” The phrase, ‘as opposed to’, precisely implies that these services have less (or no) expertise, which is simply untrue.

As a consequence of this, other people such as local commissioners (in the NHS), many clinicians, some people working in so-called level I service providing commissioned specialist rehabilitation, patients and probably the public all often assume that other rehabilitation services are non-specialist, which they interpret to mean second rate, having no expertise, not worth commissioning.

I conclude that the commissioning process and terminology has further complicated the use of the term specialised. It is referring to expensive, low-volume services but the description, when applied to rehabilitation, has seriously demeaned the other services such that many are no longer being funded or supported.

Why is specialised used?

Referring to a service as specialised alters how it is perceived. One reason for using the word, at least in the UK context, may be as a way of emphasising that a service offers more than therapy. An historical equivalent is the distinction that evolved between people who offered the public healthcare, such as ‘barber surgeons’ or herbalists, and doctors. Slowly a professional group was defined, developed a portfolio of ‘special’ knowledge and skills with accompanying professional standards of practice.

At present there is no method to identify that a service has expertise in rehabilitation as an activity based around a multidisciplinary team and having a holistic approach. Any one can state that they offer rehabilitation – and many people and services do. The word, specialised has come to be used as signifying the practice of rehabilitation outlines elsewhere in the website. It is used to contrast a commitment to rehabilitation based on multi-disciplinary teamwork and a holistic approach against rehabilitation comprised of therapy delivered by anything from a single person to a few people from 1-2 different professions offering specific interventions only.

I conclude that in practice, in the UK at least, the term specialist, when applied to rehabilitation, is being used to distinguish between services that offer a truly holistic approach, including the range of interventions needed when taking a holistic approach, from services based on a few people from one or two professions offering a limited range of interventions. Professionals working in the ‘incomplete’ service may well understand the holistic approach needed, but the service cannot deliver a holistic service.

Identifying rehabilitation services

The first step needed to improve rehabilitation services within the UK is to agree on a working definition of a rehabilitation service. The difficulty has two components: defining rehabilitation as distinguished from other aspects of healthcare; and then defining a service as being distinct from other services. Neither of these difficulties is insuperable. Indeed the existence of specialities within healthcare shows it has been done many times. For example. cardiology is a specialist area of healthcare, and cardiac services are a specialist set of services. This speciality is based on disease, but other services such as radiology, or pain services are based on interventions and symptoms respectively.

Rehabilitation has had difficulty in establishing itself for many reasons. It does not apply to any particular disease or group of diseases; it does not apply to any separate symptom or group of symptoms; it is needed by very many patients seen in very many services, and these patients receive ‘incomplete’ rehabilitation; it does not have any single profession uniquely identified with it and providing it. In other words, the need for rehabilitation is everyone’s problem, but no-one’s unique interest. The only specialist professional recognition of rehabilitation that exists started in 2007, and it is for doctors.

The recent overhaul of specialist training in medicine was accompanied by the identification of a small number of high-level outcomes that trainee doctors have to achieve in their speciality. These high-level outcomes are unique to the speciality. Rehabilitation medicine has eight such outcomes (see the curriculum here), and they can be used to define what is special about rehabilitation. With minor changes, a set of high-level characteristics that could identify any professional as having expertise in rehabilitation have been published. They are discussed on this website here.

It would not take much work to convert the capabilities into a definition of the characteristics that would define a service as offering rehabilitation. A suggested set of six characteristics are that the service:

  • bases all its clinical processes, record keeping, quality control processes, and service goals on the biopsychosocial model illness;
  • bases all clinical work upon a multidisciplinary team which includes professions with expertise in rehabilitation, and which can from its own (team) resources assess and treat at least 80% of the problems presented;
  • works collaboratively across all boundaries with other services ad organisations involved with their patients;
  • is able to deliver all four of the common, generic rehabilitation interventions – exercise, practice at activities, education and self-management training, and psychosocial interventions;
  • develops and documents comprehensive rehabilitation plans for each patient seen, with appropriate use of goal setting as part of the planning;
  • accepts responsibility for managing the many issues arising from clinical uncertainty, and from legal and ethical considerations.

As an aside, I note that there is an organisation that accredits rehabilitation facilities – the Commission on Accreditation of Rehabilitation Facilities (see here). This organisation does take a broad view of the conditions that rehabilitation covers, a view I would support. However, its focus is on service quality and processes and, as far as I can see when searching its website (which is not easy!), it does not actually consider the quality of the rehabilitation in terms of the structures, processes and outcomes. So it cannot really identify a service as offering rehabilitation. Moreover, the organisation seems very process-driven, and only large organisations could take on the bureaucratic burden of being accredited.

I conclude that the UK at least needs to develop an agreed, and validated means of identifying individuals from any profession as having specific expertise in rehabilitation, just as doctors do now. At the same time, the UK NHS needs to develop a working definition and means to identify that a service is a rehabilitation service, distinct from offering a limited range of therapies or other interventions.

Delivery of rehabilitation expertise

The second step to improving rehabilitation in the UK is one I put forward recently. I suggested that the disruption caused by Covid-19 could be used to re-organise rehabilitation on a logical, coherent basis to give the whole population high quality services. In the article, I suggest that existing resources devoted to rehabilitation would, after being organised properly, deliver much better rehabilitation to many more people needing rehabilitation.

A series of drawings may help illustrate the argument:

  • the current chaotic ‘organisation’ (totally unorganised) of services delivering parts of rehabilitation – here.
  • the important observation that rehabilitation spans six different types of boundary, making categorisation or separation impossible – here.
  • the ‘internal structure’ of an ideal, fully integrated and comprehensive rehabilitation service – here.
  • how this service would be integrated within and work in parallel with other healthcare services – here.

Current services have evolved in response to particular historical, political, and practical circumstances. They have no underlying logical or coherent organisation. Consequently they are truly chaotic – without form. There is waste, duplication, delay while people move from service to service; gaps where many people simply cannot have needs met; often failure to collaborate as different organisations are involved; no-one taking responsibility for meeting the needs of patients. The chaos has recently been well illustrated in relation to rehabilitation after trauma. Another study found that, after stroke, patients take varied pathways through the network of services.

Any attempts to partition rehabilitation services will inevitably fail, because patients never fit categories well and the holistic nature of rehabilitation means that boundaries cannot be drawn. There are no natural fault-lines that divide people. The most damaging current categorisation is between ‘mental health’ and, presumably, ‘physical health’ services.

Yet, within rehabilitation, it is essential that there are teams and people who develop particular knowledge and skills. This may be about a disease, or an impairment, or indeed about any area of assessment and treatment. But these skills will not map onto each other, nor will they map onto any coherent group of patients. Each patient’s needs are unique.

There is therefore a dilemma: each patient should see the most appropriate and expert people for their situation, but collectively the needs of patients do not lead to any reasonable grouping such that almost all needs of that group can be met from within the team, and no patients from outside the group will need access to the expertise within that group’s team.

The solution proposed is for all services delivering rehabilitation, including those services currently funded by Social Services, to coalesce into a single rehabilitation service responsible for delivering its services wherever they are needed. As rehabilitation should start as soon as the person develops any disability, this means working in parallel with other health services. This contrasts with current practice, where many patients only receive rehabilitation after their medical care – rehabilitation is in series, not in parallel.

The need for expertise is met by teams or individuals within the whole rehabilitation service having expertise which can be called on easily and rapidly when needed. Within a service there would be no artificial boundaries. The actual organisation of teams would evolve and change in response to changing needs etc.

It is also important to note two things. This arrangement allows anyone from any profession to gain experience across all areas of rehabilitation, and to learn much more quickly from real experts. Second, there would be a significant proportion of people with quite generic skills who could work in the areas that needed them most.

The bringing together of these services would greatly improve the quality of services. It would greatly increase the opportunities for learning and teaching, and it would offer a much better ground for collaborative research into rehabilitation. It would also, once complete, significantly reduce waste and increase efficiency. It would require a new, more ‘relaxed’ form of commissioning because patients would not be following predefined pathways, nor would they be attending defined ‘programmes’. But with mutual trust and openness, this is not an insurmountable obstacle.

I am sure that more resource will also be needed in the long-term, but in order to achieve that the government has to (a) fund a much greater number of students in all healthcare professions and (b) to fund the NHS at a level comparable to most other European countries. It should also increase the proportion given to rehabilitation. Third, it needs to develop a logically coherent, sound and fair way to fund social care.

I conclude that without a complete re-organisation of rehabilitation service, abandoning the current organisation which just reflects history and politics, and designing an organisation on some comprehensive and coherent framework, patients needing rehabilitation will never receive a good service. The framework must be the biopsychosocial model combined with the evidence-based characterisation of rehabilitation put forward. (see here)

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