Disease-specific rehabilitation
Over the years, I have heard people advocating strongly for specialist rehabilitation services for people with stroke, multiple sclerosis, traumatic brain injury, motor neurone disease, Huntington’s disorder, and many other specific diseases. I have also heard people advocating specialist services for people with behavioural disorders (whatever that might be), memory and cognitive disorders, chronic pain, amputations, etc. This reflects a natural wish for every patient to be seen by an expert in their problem. In this blog post, I explore the reasons for these wishes, the difficulties associated with these desires, and the way forward. I suggest that rehabilitation follows medical specialisation that occurred between 1980 and 2010, a trend that became unsustainable. We should plan a better way to give each person excellent service, not dependent on extreme specialisation. The whole blog post is summarised in this MindMap.
Table of Contents
In about 1990, I gave a talk on stroke at a meeting organised by the Stroke Association for people with stroke and their families. I suggested that stroke patients would best be seen in neurological rehabilitation services. One young woman aged about 30 years objected, saying, “People who have had a stroke don’t want to be with a whole lot of old people. They want a specialised stroke service.” She was surprised to learn that the median age of stroke patients was about 75 years. She wanted a service to support someone with domestic, social, childcare, and employment activities.
Introduction
It is both fortunate and unfortunate that spinal cord injury rehabilitation was such a spectacular success. Between about 1938 and 1958, the early pioneers of spinal injury management developed an effective rehabilitation programme centred on the service taking responsibility for everything from as soon as possible after the injury until the patient died. Many centres undertook spinal surgery in the acute phase and other surgical procedures such as skin debridement, tendon transfers and bladder surgery.
Several developments occurred. Some spinal centres broadened their scope to take patients with spinal cord damage from other causes. In the UK, other centres had insufficient beds to meet demand, and consequently, patients either waited months or were seen in neurological rehabilitation centres. Lynne Turner Stokes and colleagues found that this now accounts for nearly one-third of all patients. Furthermore, general wards have become so deskilled that patients with spinal cord injury are at risk of problems when admitted with other conditions.
Stroke is another condition where specialised services are advocated. In contrast to spinal injury rehabilitation, the research evidence in favour of the effectiveness of specialised stroke units is overwhelming. There is also reasonable evidence for an early supported discharge service provided that the service has adequate resources and a coordinated multiprofessional team, and patients must be selected.
These two examples have encouraged other patient groups to request dedicated expert services. I will discuss some problems making this an impractical idea, likely to disadvantage and harm many patients. This MindMap summarises the arguments.
Generalisation from research.
Rehabilitation research suffers the same problem as most medical research; the population studied does not represent all patients. Some trials only consider patients with a first-ever clinical stroke; others may exclude patients expected to die or who are comatose; some have age limits; and so on. The patients not studied nevertheless had problems due to stroke and needed rehabilitation, and their issues will differ systematically from those in the studied population.
One particular group of stroke patients are disadvantaged by the research evidence, younger patients who were previously employed or active domestically, socially, or in other ways, including undertaking childcare as a parent or grandparent. Almost all stroke services fail to meet the needs of a significant minority (15%) of patients.
The Early Supported Discharge research illustrates other problems. First, patients not meeting the criteria may still need rehabilitation after discharge from the early discharge service, and no late specialised stroke service exists. As commissioned, early supported discharge is usually time-limited, but this is inappropriate for some patients with complex unmet needs.
Further, research may select certain patients or exclude others even though the excluded patients might benefit as much. Research trials usually only provide a service for a limited time. Commissioners looking to limit access (to reduce expenditure) may specify whom services may see based on the criteria used in the research, thereby creating a group of people with unmet needs.
Average needs and individual needs.
Services specialised in a patient group, however defined, will focus on the needs of most patients. But every group will have outliers whose problems are more (or less) complex than the central 95%. Within some groups, such as patients with stroke, there may be well-recognised subgroups whose problems are significantly different. I have already mentioned one group, the 15% of younger patients. Within stroke, patients surviving subarachnoid haemorrhage are usually quite different, with features more typical of traumatic brain damage.
Even within the main group, the variation in severity can be considerable. Consequently, the rehabilitation resource needed will vary, but many services only offer fixed packages.
Within conditions such as multiple sclerosis, the vast range of potential impairments and severities is so large that it is impossible to describe an average patient or set out a coherent set of needs that might encompass 50% of all patients. Some patients with multiple sclerosis mainly have spinal cord dysfunction and might appropriately be seen within a spinal injury service. In contrast, others with severe movement disorders might gain from the expertise of a Huntington’s disorder service.
Changing priorities over time.
The primary needs of most patients evolve with time. In the early phases, there is a focus on disease diagnosis and disease-specific treatment. Fairly quickly, the focus moves on to impairments, and within weeks or months, functional activities are recognised as mattering more. Finally, most people reach a stage in their adaptation where social matters are most important.
The speed of this journey differs significantly according to the disease, the person’s characteristics, family influences etc. Nevertheless, within a few months to a few years, most people recognise the importance of social activities and social roles. As the patient moves down their path to the future, their needs become less determined by the disease or condition and more determined by local factors – family, friends, geography, economic factors, etc.
Thus, disease-specific expertise is needed less over time, and the need for socially-focused rehabilitation support increases. Nevertheless, fluctuations or relapses may occur in many conditions, and sometimes attention should return to the disease or its associated impairments. Fortunately, many people have acquired considerable expertise in their disorder and can manage these fluctuations also.
Disease-specific rehabilitation - for every disease?
If you can argue for a single specialised service for any disease or condition, you can make the same argument for every other illness. Every disease has something unique, identifying it as a separate disease, and that can always be put forward as a reason. There are several counterarguments.
While each disease has something unique, it will share much in common with patients with different diagnoses affecting the same organ and, after a while, with patients with any illness. In almost every case, the amount shared in terms of limitation on bodily structures and physiological functions and limits on activities will hugely exceed any unusual limitations associated with the disease. Thus, the existence of something unique in terms of primary features is countered by the much greater number of secondary consequences shared with patients with other diagnoses.
Secondly, within a population of people with any disease, there are always spectrums in all features, such as the clinical features that predominate, the severity of any particular loss, and the combination of features a single patient possesses. In many cases, the rehabilitation clinical needs of a patient with a disease will have more in common with patients with other diagnoses than those with the same diagnosis. For example, patients with a subarachnoid haemorrhage are classified as having a stroke but are often more closely matched to patients with traumatic brain damage.
Conversely, in a population with the same diagnosis, there will always be people with unusual needs who need something not provided within a disease service. For example, a small but significant number of patients after a stroke will require vocational rehabilitation, a service rarely included in a stroke service.
Third, many patients do not have a definitive diagnosis, or their diagnosis is disputed, and they may be excluded from a service well-suited to their needs. Patients with a functional disorder often fall into this category.
Last, there is the obvious problem of thousands of identified diseases. Having a rehabilitation or medical service devoted to each one would be impractical. There is no rational way to choose which diseases should have a specialist and exclusive service. Even spinal cord injury rehabilitation, which for many years was moderately self-contained as a service, now has to draw on other services such as District Nursing, Wheelchair services, and plastic surgery services.
In summary, the problems associated with diagnosis-specific rehabilitation services include:
- Duplication of clinical expertise across many services,
- A significant proportion of people with the diagnosis need expertise not available within the service,
- Border disputes when people have two or more diagnoses,
- Many patients cannot access a service that meets their needs because they need the diagnosis (or the diagnosis is disputed), and there is no service for them.
This leads to the following:
- Inefficient use of scarce resources,
- Patients suffering delays due to onward referrals or disputes about responsibility,
- The opposite of patient-centred, needs-led care.
Accessing disease-specific expertise - a solution
I doubt anyone would plan and organise rehabilitation services as they are now organised. Indeed, they are not organised. They exist and can be described, but no rational framework underlies the situation.
This chaos arises for several reasons:
- A piecemeal development as individuals and specialities saw a need and managed to attract resources to develop a new service, leading to the chaos illustrated here;
- The dominance of the biomedical framework within healthcare for over 100 years and still now;
- The lack of any reasonable alternative framework until the biopsychosocial model of illness was developed in 1977;
- The variety of agencies (e.g. health, Social Services) and organisations within those agencies (e.g. hospitals, care homes, community services) involved.
On the other hand, we must start from here, however unsatisfactory the present arrangements are because the many interested parties will never agree upon wholesale reorganisation.
Our guiding principle should be to centre everything upon the person, to be person-centred. And a critical part of this principle, highlighted in a major review, is that organisations must accept and act on the declaration.
Our starting position is that patients needing and receiving rehabilitation will, as a group, require input from the following:
- Many different services are managed by
- Many other organisations funded by
- Many other sources, with
- Different understanding of rehabilitation, and
- Different criteria for accepting responsibility, and
- Different priorities, and
- Different processes for accepting and managing people who are referred.
The first step is for someone to accept responsibility for improving services and to start the process. Given that the problem is related to healthcare, the most appropriate organisation in the UK NHS would be the Integrated Care Board (in England) and the equivalent in other countries. The Board is responsible for the Integrated Care Service to its population.
The next step is to compile a compendium of all services that provide significant rehabilitation input to patients, regardless of their provenance. This will be a gradual, incremental process; it would be best to start with healthcare services.
This will then allow the crucial step of forming a rehabilitation network comprising all organisations and services used by patients needing rehabilitation or able to meet their rehabilitation needs. This network would eventually need its governance structure. This will also be a gradual, incremental process.
The network has two vital roles.
The first is to maintain an accurate, comprehensive, and regularly updated register of all services providing rehabilitation services to the local population; this register will include services outside the locality, but they should be a part of the network as far as possible. The register should consist of some agreed standard data about each member. It should also specifically identify individuals or services that have disease-specific expertise.
The second vital but challenging role is to agree on standard systems for:
- Making and accepting referrals
- Sharing information
- Transferring responsibility for aspects of patient care
- Contacting and collaborating with an expert in another service about an uncommon need arising in the service with primary responsibility.
These systems need to:
- Minimise bureaucracy and delays
- Avoid (preferably) or minimise the need for funding agreement, and ensure rapid response systems for agreeing on funding if needed.
- Always prioritise the patient over the system and the service; if a service is the most appropriate one able to meet most of the needs, it should be agreed,
- Possibly have a way of identifying a lead service with responsibility for a patient at any particular time; it might often be the General Practice.
This arrangement overcomes the difficulty of a person with a particular diagnosis not having available disease-specific input when needed. For example, if a patient with Huntington’s disease is seen in a neurological rehabilitation care home, the care home could find a suitable expert to advise on the best approach to manage the chorea.
The referral system could be based on the Rehabilitation Prescription, first developed for rehabilitation after major trauma but is now widely used.
Visual representation.
For anyone who likes diagrams, I illustrate the main features here.
Many small services provide an aspect of rehabilitation in any locality.
The group of people associated with a patient extends well beyond a single lead rehabilitation team.
A person-centred approach would be easier within a collaborative network without bureaucratic or financial barriers.
And the outline MindMap is here.
Conclusion
Diagnosis-specific rehabilitation services should not be developed, even for common conditions. They are proposed to ensure the selected population receives rehabilitation explicitly tailored to patients’ needs. However, the diagnosis does not determine much of a person’s rehabilitation needs, and exclusive services must refer many patients to other services. Access to expertise in the disease is better achieved by enabling barrier-free assistance from a relevant expert when needed, which will be rare. Instead, we should develop comprehensive rehabilitation networks that will act as a register of all services and expertise available to the locality and establish procedures to allow seamless collaborative care and transfer of care. This will require considerable effort to set up but will likely increase effectiveness and efficiency once it is developed.
