In 1980 I started a three-year project, a large (n = 700+) controlled clinical trial investigating whether a community stroke rehabilitation team would reduce the use of hospital resources. My results found no effect. Twenty years later, I was still interested in community rehabilitation and, with Pam Enderby, published the results of a survey she undertook. We concluded, “Community rehabilitation in the UK is currently characterized by small, often short-term teams with poor identity and the term has no clear or consistent meaning.” My accompanying editorial reviewed what community rehabilitation was, a question.
I further elaborated on in 2003 when my concluding solution was, “We should work towards a network of rehabilitation teams, some specialized in specific diseases or interventions, and some in longer-term involvement with patients in the community with special emphasis on increasing social participation and ensuring good support. At all times, we should balance the advantages of delivering the service in the patient’s home against the obvious problems concerning practicality and the equitable use of scarce specialist staff time.” A further 20 years on, community rehabilitation is again being promoted. This post considers what the term encompasses and why no progress has occurred over 40 years.
Table of Contents
Preamble – what is community rehabilitation?
I have already discussed the nature of rehabilitation and the characteristics of an expert in rehabilitation elsewhere on this website. I will discuss how community rehabilitation is distinguished from – what?
The main contrast is between rehabilitation delivered in acute hospital settings, including outpatient departments, and rehabilitation provided in all other locations. However, there is an insidious further contrast between specialist and all other rehabilitation, including community rehabilitation. I have discussed the use of the term specialist rehabilitation in an earlier blog post.
In this post, I use the term community rehabilitation to refer to all rehabilitation delivered to a patient in any setting outside a hospital. I do not distinguish who pays for the service, where the service administration is based, or which organisation manages the service. Specifically, this description includes all rehabilitation delivered by Social Services and any rehabilitation provided in community hospitals or care homes.
The central common feature is that the patient is either living in the setting or is there because they cannot go home until care or suitable accommodation is available.
History of community rehabilitation.
Why has community rehabilitation not developed over the last 40 years? I will review the history because it usually reveals why problems remain unresolved.
Rehabilitation, returning people to productive activities, has always been important to armies. The First World War sparked a broader interest, still in the context of war injuries but not only focusing on returning a soldier to fighting. In the 1920s, doctors developed a speciality termed Physical Medicine, which did rehabilitation, although the term was not used until 1940. The doctors were in hospitals, albeit the service was often delivered on an out-patient basis. The UK specialism started in 1943.
Thus, from an early stage, rehabilitation was (a) specialist, not expected of most doctors and (b) based on hospitals, not in the community. Rehabilitation fitted itself into the predominant biomedical healthcare model, setting itself up as something only specialists could do. Specialisation was associated with medical techniques such as ultrasound, electrical stimulation, injections etc.
Although this specialisation was started by doctors, from the early stages, therapists became involved initially as a part of the Physical Medicine service (e.g. Physical Therapists) with specialist knowledge and skills.
In the second half of the twentieth century, the specialisation of healthcare services had become quite extreme, with many subspecialised services within organ-specific specialities. Rehabilitation was no exception, with musculoskeletal rehabilitation, cardiac rehabilitation and, more recently, neurological rehabilitation with various subspecialties such as neurobehavioural rehabilitation.
General Practice was the only speciality – and it is a speciality – that retained and emphasised the importance of a holistic approach which, unfortunately, did not include a focus on disability and rehabilitation.
Then, early this century, the UK General Medical Council recognised that specialisation had progressed too far in a publication, The Shape of Training. As the population’s lifespan increased, most patients had multiple diseases, and the number of acute specialist services made integrated care difficult. Geriatricians became specialists in multimorbidity and also, initially, in rehabilitation. Since about 2000, geriatricians have been moved from their prominent role in rehabilitation to a vital role in providing acute medical care for emergency admissions.
In summary, once the need to help people with long-term disabilities lead a full life was recognised as part of healthcare, doctors and others started to carve out a hospital-based specialist service with identifiable interventions that only they could do. Thus, even though most people with long-term disabilities lived outside hospitals, the services were in hospitals.
Community rehabilitation now.
The overwhelming feature of rehabilitation delivered outside a hospital is the same as it has been for decades. It is a chaotic patchwork of small services, each with few staff and little expertise, often short-lived. I have discussed this in a previous blog and in published articles.
The chaos is manifest by, for example, differences and changes in:
- The names used for similar services;
- The criteria for acceptance for similar services;
- Different, arbitrary fixed times that a service can be involved;
- The absence of any coherent relationships between services such that a patient may fit the criteria of no service or several services within a locality;
- The funding and commissioning arrangements and the organisation responsible (Health, Social Services, charities etc.)
There is rarely any formal link with the hospital services and gaining support in complex cases is difficult. There is rarely a link with other services involved with the person, such as social services.
The proposed solution is always the same – signposting, case managers, neuro-navigators, and other similarly-termed people. This solution fails to acknowledge that there is often no available service, or the service has such limited resources or funding that it cannot meet the person’s needs.
Adding signposting, case managers and the like to the current chaos is simply a placebo; it raises expectations but is ineffective. It pleases no one.
Two problems need addressing:
- Specialisation. I think it is fair to say that most people consider community rehabilitation non-specialist, not requiring any specific knowledge or skill. This is associated with low status.
- Status. Community rehabilitation services have low status, and the professionals working in them are given low status compared to the ‘specialist hospital service’.
- Service organisation. There is no community rehabilitation service. Many small services work in the community without coherent organising principles underlying them.
- Support. People working in the community rarely have any expert clinical support that could follow free access to specialist hospital teams, such as advice on the nature of a disease, the use of a drug, or the cause of a new clinical problem.
- Collaboration. Existing services work in isolation. Collaborative working with a specific patient is common, but cooperation between services is minimal within Health and between Health, Social Services, Education, and Employment.
Specialisation and Status.
Specialisation and status are closely intertwined. Specialisation depends on the specific knowledge and skills associated with the activity. In this case, what does someone practising community rehabilitation need to know or be skilled at that is not necessary for other rehabilitation settings?
All rehabilitation aims to enable someone to live in and be part of their local community, encompassing people, organisations, and structures such as available public transport and buildings. Anyone working in the community must acquire information about all aspects of the locality such as which pubs or cafes are accessible to the person, how to get to the cinema or club with their problems and resources, who runs the food larder and where it is (given that poverty and poor nutrition are common), and so on.
Most training of healthcare professionals is based in the hospital system, which means that most healthcare professionals are used to and dependent on all the resources available in hospital settings and the dedicated space available. In the community, this environment is missing, and the patient’s location constraints all activities. This is, of course, a great strength of community rehabilitation because all activities are in context. The professional must adapt their techniques to the environment while adhering to the essential principles underlying effective rehabilitation.
In contrast to hospital settings, community settings usually include family and friends who, in hospital, can be excluded if wanted but cannot be excluded (or ignored) at home. This is a strength, and the expert in community rehabilitation is skilled in educating and engaging family and friends in the rehabilitation process, including obtaining information from them and their help in encouraging the patient.
Community rehabilitation must be a team activity with a similar range of professions, including doctors specialised in rehabilitation. However, in contrast to hospital-based practice, the team is not nearby when a patient is being seen. Thus, each team member needs to have a broader range of knowledge and some skills in each of the other professions. Each professional must be confident in knowing when they can assess and manage something and when they need help.
Furthermore, a community team must have a weekly meeting to discuss their whole caseload and ask for advice or help. This means that the professionals must be skilled at sharing information about patients and listening to and giving advice to other team members. This ability to work collaboratively and efficiently without the frequent and easy contact experienced in the hospital extends to working with members of other teams and organisations. A hospital team may be self-sufficient, and team members do not need this skill.
This expertise could be systematised and recognised in two or three Capabilities in Practice. The practitioner would have recognised expertise, which will significantly enhance their status. This would be a similar process to the proposed credentialing for doctors, which is being developed (slowly) by the UK General Medical Council (GMC) so that doctors can be certified as having extra expertise to their existing speciality expertise.
Service organisation: support and collaboration.
It is widely recognised that the NHS, in common with many organisations, practices ‘silo working’ in isolation from other closely related services.
Politicians and managers regularly call for “an end to silo working” without realising that they are directly responsible for it. Each service is given a fixed budget and criteria for who may access it, when, for what, and for how long. Therefore, politicians and organisational managers define silos. They should not be surprised that clinical staff work in them; the financial rules are as effective as walls in isolating services.
The disintegration of NHS services also reaches its extreme in the community, where a vast number of small services are funded in different ways with different criteria and often working in other organisations. The miracle is how well it works, usually when a manager ignores the rules and prioritises patient well-being and common sense.
Politicians and managers also call for and say they support patient-centred care and services. Again, this is at complete variance with their actions through commissioning and in other ways where they propose separate services. The only way to achieve patient-centred care is through having holistic services that all work within a single framework.
Unfortunately, hospitals and the community are the two most pervasive and long-lasting silos. Although community rehabilitation can undoubtedly be significantly improved, unless the wall between hospital care and community care is dismantled (destroyed would be a better word), community rehabilitation will never reach its true potential. This also requires dismantling the artificial and impossible separation of ‘social’ care from ‘health’ care in terms of research and reality.
Two examples will suffice. Early supported discharge of patients after stroke is effective in research and practice. However, when implemented, many restrictions are often placed around services, so patients may not receive them. Those who do are usually transferred to other services rather than completing their rehabilitation with the original team.
The second example is the introduction of separate services for people with long-Covid. This is yet another independent service where the criteria are imprecise, so patients may be excluded despite being suitable for the rehabilitation offered. Furthermore, though almost all patients are in the community, most services are based in and delivered in hospitals.
Rehabilitation teams who deliver most of their services in the community need free, unfettered access to hospital-based specialist services for advice and, rarely, for additional support. The advice might be from a medical team about a disorder or from a rehabilitation team about the patient’s rehabilitation, such as their suitability for an intrathecal baclofen pump.
The corollary is collaborative working, particularly with inpatient rehabilitation services, which must be two-way; community services need access to hospital expertise, and hospital services need easy access to the expertise of community services. One prominent example is when transferring care from the hospital to the community. The community team may need to spend time in the hospital with the hospital team, learning about the patient’s needs and informing the hospital team about the patient’s locality and home.
Less obviously but more crucially, when a patient known to a community team is admitted to a hospital, they should visit as soon as possible to pass on all they know about the patient’s previous state, personal priorities, and social and physical environments.
Discussion – synthesis
I hope that I have established that:
- Community rehabilitation covers all services delivered outside an acute hospital, including the outpatient service.
- The many rehabilitation services delivered in the community are small, not part of any coherent service organisation, often short-term, with limited accumulated wisdom.
- Community rehabilitation requires unique capabilities that are not needed in hospitals.
- Credentialing this expertise would improve the expertise and status of community rehabilitation.
- Community services work in isolation because commissioners, politicians, and organisation managers give them small budgets with strict specifications and criteria, preventing patient-centred and collaborative working.
- The most significant separation is between hospital and community services.
Anyone who does not believe points (b) to (d) should spend time in team meetings in an acute hospital and team meetings in the community and follow a patient as they pass around the so-called system, which is not a system but chaos. Discussion about finding and accessing social care, rehabilitation input, funding etc., takes a significant and, at times, a considerable amount of time.
I have suggested above that the fundamental problem is not that clinical services work in silos; the real problem is that politicians, the Department of Health and Social Care, and senior managers of health and social care organisations have built management silos and placed teams within them. Weak incentives to work ‘outside the box’ cannot overcome the intense pressures exerted to stay within the box.
The second fundamental problem is that no one in a high leadership position in health or social care has any interest in, knowledge of, or responsibility for rehabilitation, which is perceived as an unnecessary service requiring no expertise (even in hospital). If it is considered necessary, rehabilitation is avoided by stating that it is someone else’s responsibility – the Level One specialist service, Social Services, Community services etc.
Leadership matters. Professor Sir Keith Willett, who led the work developing Major Trauma services in the UK, made rehabilitation central to all services. Unfortunately, some Trauma Centres used the considerable money attached to services for rehabilitation to support surgical and medical services. Nonetheless, his effort has transformed trauma rehabilitation, although further progress is needed.
A third problem relates to using words and our overwhelming desire to categorise and define everything. People feel that specialisation – having expertise in a topic – necessitates separation. The obvious example is the actual separation of stroke rehabilitation and spinal cord injury rehabilitation from other rehabilitation services. Another example is the frequently expressed wish to have specialist services seeing only patients with multiple sclerosis, traumatic brain injury, chronic fatigue syndrome, Long-Covid etc.
In practice, having particular expertise within a general service is possible. Most neurology or cardiology services will have a doctor or specialist nurse who is an expert in, for example, epilepsy or ischaemic heart disease but is still a part of and integrated into the full service. Developing and retaining expertise does not require separation.
The drive for categorisation leads to supposed definitions of chronic fatigue syndrome, fibromyalgia, chronic pain, and long-Covid so that the person can attend the ‘correct’ specialist service. In practice, these four conditions overlap and are often indistinguishable. More importantly, the clinical needs of these patients overlap by at least 90%. If a patient has an unusual feature, they should see the person most able to help, regardless of the diagnostic label.
Community rehabilitation – suggested solutions.
My suggested solutions are as follows.
For every locality (say 300,000-500,000 people), a named person must be responsible for rehabilitation services delivered in all settings. The data collected, if any, must be the same regardless of a patient’s location or service delivery. The analysis must be at the level of the population.
There should be a single budget for rehabilitation services across all settings, with indicative budgets for services to different groups, services, and services. Nonetheless, all transfers of care and responsibility should occur without any financial consequences for the parties involved in the transfer. The services should always consider what is best for the patient.
To facilitate this, the staff should be employed by an overarching organisation to work in any setting. An individual will have a base and likely spend most of their time working in one geographic and clinical area. However, if necessary for a patient, the person should be able to work elsewhere. Also, if, over time, the pattern of services changes, then staff need the flexibility to move without changing jobs.
Within this overall service, individuals would have or develop expertise in particular areas such as a rare disease (e.g. muscular dystrophy), an unusual treatment (e.g. use of environmental controls), or assessing a specific problem (e,g spasticity) and so on. These people would be available to the whole service.
The service, as a service, would be involved as needed at all stages – acutely, mid-term and long-term. These ideas are expanded in other papers I have written.
Conclusion.
I started this post by discussing community rehabilitation and how it might be improved. I have finished making two suggestions. First, community rehabilitation is an area of expertise that needs credentialing recognition. Second, although community rehabilitation is an important area, it is not separate from the whole of rehabilitation and must be a part of an integrated rehabilitation service for the whole community. This will only occur if there is a director of rehabilitation responsible for all rehabilitation services for a locality and with authority to achieve a locality-wide, integrated service with no internal boundaries impeding patient-centred care.