‘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. Iconclude that all expert rehabilitation (i.e., rehabilitation based on the biopsychosocial model of illness and input from a multidisciplinary expert team and is patient-centred, prioritising desired social outcomes as I have described on this site) is specialist. It is inappropriate to define one particular part of rehabilitation (i.e. inpatient rehabilitation for patients with challenging problems) as being a specialist. Such services are vital to meet the needs of their patients, but other services are equally specialist, with different areas of specialisation or expertise.
Table of Contents
Specialist v non-specialist
Using the word specialist before rehabilitation implies two rehabilitation classes, one specialist and one non-specialist. The way that the word ‘specialist’ is used in the UK generally differentiates in-patient rehabilitation services with medical input as being specialist from (typically) 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.
This distinction is not based on evidence.
Rehabilitation, as a service, involves a multi-disciplinary team. A single professional cannot be classified as delivering rehabilitation if they work in isolation. Teamwork, which means working as part of a defined team, is a central characteristic of effective rehabilitation. The multi-disciplinary team should include all professionals 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, considering the many factors that might be causing or exacerbating the problems and evaluating interventions across the biopsychosocial model. There is no reason to believe hospital patients have more complex issues than outpatients. When assessing and formulating the situation, the intellectual demands on the rehabilitation service 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 complicated because of the many more varied contexts faced – the patient’s home, their family, the lack of some equipment and so on.
Indeed, the care needs of inpatients are often more remarkable, but patients with equally great care needs may be seen in nursing homes and their own homes.
So, I conclude that the distinction between rehabilitation services based on their expertise, the care needs of the patients, and the treatments needed is not logical. Other rehabilitation services have different types of expertise, but both are important and valuable.
Specialist within rehabilitation.
The section above concluded that rehabilitation should not be described simply as specialist. This part considers how it might be used to indicate that the service has particular expertise in some part of the rehabilitation process. For example, it could specify in-depth knowledge and skills in using assistive technology or managing patients with brain damage and challenging behaviour. As it is self-evident that individual professionals and individual teams will be more expert at some things rather than other things, specialisation is inevitable.
However, it is essential to consider this a bit further. Many rehabilitation services have, within the service, people or teams with more expertise in one thing than others. For example, some neurological rehabilitation services may have someone who knows more about cerebral palsy in adults, post-polio syndrome, or treating writer’s cramp and dystonia. But this person uses their expertise in the context of the whole team. Team members will meet most patients’ needs without the extra knowledge. When needed, the person with the expertise will give advice and input to the rest of the team.
The service may gain a reputation as 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 more extensive service. In Oxford, the amputee rehabilitation team was part of the Oxford Centre for Enablement service until it was removed. The full service included people expert in assistive technology, acute and long-term neurology, out-patient, some out-reach services, chronic pain, etc.
Was the Oxford Centre for Enablement specialist, or not? And if so, what in?
When placed before rehabilitation, I conclude that the adjective, specialist is inaccurate in showing its expertise. If a service only has one area of expertise, it should be described as ‘a rehabilitation service specialised in ….’. More generally, rehabilitation services should express themselves as ‘rehabilitation services with particular expertise (or interest) in … a variety of things.’
Condition-specific rehabilitation
A third use of the term specialist is to 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 with the named disease; the other implication is that other services will not be competent at managing the condition and that all patients should go to the specialist service. This post was first published on January 1st 2021; I have since written a post on disease-specific rehabilitation that raises concerns about the principle of condition-specific rehabilitation. On behalf of the British Society of Physical and Rehabilitation Medicine, I have argued that specialist traumatic brain injury services with specific professionals are inappropriate.
This use of the term raises many vital 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 services provided 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 could fund and publish research showing the considerable needs of patients with the condition.
This usually leads to allocating resources based on something other than the needs of individual patients. A patient within the specialist service with relatively few needs may have them satisfied, while patients with more significant needs 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 particular expertise working in a service is not ‘allowed’ to see patients with other conditions needing their expertise, even if they can see such patients.
Given the few professionals available and many conditions wanting ‘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 disease 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 sure whether someone has any specific disease or damage within the brain. Leaving that uncertainty aside, it is impossible to know what is or is not included as acquired, and the term injury needs to clarify what is or is not included. 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 cost.
The difficulties in deciding who might or might not be seen within a long Covid specialist service are already becoming apparent, 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.
As I have written elsewhere, I conclude that rehabilitation services specialised in particular conditions should not be promoted. Most of the expertise most patients need is generic across many diseases, and if specific knowledge in a state is necessary (and it certainly will be required), 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. This is not to deny that expertise in conditions is unnecessary; it is, but one does not need exclusive condition-specific service to deliver expertise to those who need it.
Commissioning definition.
In the UK, a fourth complication concerns those who fund healthcare services and the definitions they use to determine what they will or will not invest. 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); 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.”. Then it 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.”
The commissioning document drew heavily on material written by Professor Lynne Turner-Stokes and published by the British Society of Rehabilitation Medicine (BSRM) as it used to be called. The content of her document in 2014 (Rehabilitation for Patients in the Acute Care Pathway Following Severe Disabling Illness or Injury: BSRM Core Standards for Specialist Rehabilitation) set commissioning in the context of all types of rehabilitation needed, including a reference to specialist community rehabilitation services.
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 situation 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 specialist services translates into paying for expensive services and 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 term ‘as opposed to’ precisely implies that these services have less (or no) expertise, which is untrue.
As a consequence of this, other people such as local commissioners (in the NHS), many clinicians, some people working in a 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.
The commissioning process and terminology have further complicated the term specialised. It refers to expensive, low-volume services, but when applied to rehabilitation, the description 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. In the UK context, one reason for using the word is to emphasise that a service offers more than therapy. A historical equivalent is a distinction that evolved between people who offered the public healthcare, such as ‘barber surgeons’ or herbalists, and doctors. Slowly, a professional group was defined, and a portfolio of ‘special’ knowledge and skills with accompanying professional standards of practice was developed.
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. Anyone can state that they offer rehabilitation – and many people and services do. The word specialised has come to be used as signifying the rehabilitation practice outlined elsewhere on the website. It contrasts a commitment to rehabilitation based on multi-disciplinary teamwork and a holistic approach against rehabilitation comprised of therapy delivered by anyone from a single person to a few people from 1-2 different professions offering specific interventions only.
I conclude the term specialist, when applied to rehabilitation, should be used to distinguish between services that offer a genuinely 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 understand the holistic approach needed, but the service must deliver a more holistic service. In practice, in the UK, it is mainly used to describe expensive inpatient rehabilitation services.
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 defining a service as 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.
Rehabilitation has had difficulty in establishing itself for many reasons. It does not apply to any particular disease or group of conditions; 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 started in 2007, and it is for doctors.
The recent overhaul of specialist training in medicine was accompanied by identifying 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 results (see the curriculum here), and they can be used to define what is unique about rehabilitation. With minor changes, a set of high-level characteristics that could identify any professional with 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 professionals 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;
- can deliver all four of the standard, 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 legal and ethical considerations.
As an aside, I note that an organisation 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 sentiment 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 consider the quality of the rehabilitation in terms of the structures, processes and outcomes. So it cannot identify a service as offering rehabilitation. Moreover, the organisation looks process-driven, and only large organisations can take on the bureaucratic burden of accreditation.
I conclude that the UK needs to develop an agreed and validated means of identifying individuals from any profession with 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 a service as 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 appropriately organised, 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 critical 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 adapted to particular historical, political, and practical circumstances. They have no underlying logical or coherent organisation. Consequently, they are genuinely chaotic – without form. There is waste, duplication, and delay while people move from service to service; gaps where many people cannot have their needs met; often failure to collaborate as different organisations are involved; no one is taking responsibility for meeting patients’ needs. The chaos has recently been well illustrated with 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, there must be teams and people who develop particular knowledge and skills. This may be about a disease, impairment, or 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 good grouping such that almost all requirements of that group can be met from within the team. No patients from outside the group will need access to the expertise within that group’s team.
The proposed solution is for all services delivering rehabilitation, including those currently funded by Social Services, to coalesce into a single rehabilitation service responsible for providing its services wherever 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 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 rehabilitation areas and learn much more quickly from real experts. Second, a significant proportion of people with generic skills could work in the areas that needed them most.
The bringing together of these services would significantly improve the quality of services. It would greatly increase the opportunities for learning and teaching and 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 or attending defined ‘programmes’. But with mutual trust and openness, this is a manageable obstacle.
More resources will also be needed in the long term. Still, to achieve that, the government has to (a) fund a much greater number of students in all healthcare professions and (b) fund the NHS at a level comparable to most other European countries. It should also increase the proportion given to rehabilitation. Third, it must develop a 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 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. (see here)
