Advocating for Rehabilitation
Policy decisions are political. Policy and politics derive from the same root, polis (city in Ancient Greek) and concern organisations. The question is, what organisation represents rehabilitation in the UK? Rehabilitation is a multiprofessional team activity, but no multiprofessional organisation advocates rehabilitation. We have one explicitly multiprofessional organisation, the Society for Research in Rehabilitation, but it is not usually involved in any policy consultations and does not actively advocate for rehabilitation. This page discusses how rehabilitation is represented and the severe consequences of not having a powerful lobby group. It introduces a section of the site that looks at some organisations that contribute as far as possible. I suggest forming an overarching Society for Rehabilitation, perhaps by expanding and formalising the Community Rehab Alliance, as it is already multiprofessional and influential.
Table of Contents
Introduction
Public services—services provided to the public and, ultimately, funded by the public—need resources, not just money for people and goods but less tangible resources such as time and attention devoted to their organisation, research, education, and training. Perceived needs and public concerns influence resource allocation, and these are both affected by data and opinions from respected individuals and, more powerfully, respected organisations. People and organisations are characterised publicly as representing a profession or group of patients. No rehabilitation profession or group is coming together as ‘rehabilitationists’. Thus, rehabilitation has little influence.
Discovering multiprofessional rehabilitation societies is a challenge! Most UK and European societies with Rehabilitation in the title concern Rehabilitation Medicine and mainly represent doctors; the Society for Research in Rehabilitation is a notable exception. In the United States, the American Congress of Rehabilitation Medicine states it “is truly interdisciplinary — uniting all members of rehabilitation teams from around the world.” Its mission is “of IMPROVING LIVES of those with disabling conditions, ACRM curates and disseminates world-class interdisciplinary rehabilitation research”. It does not mention advocacy; it may play a minor role in US healthcare.
Thus, the national representation of rehabilitation in the UK is like the rehabilitation services: patchy, ill-coordinated, and ineffective despite some high-quality areas. We need to develop a single point of contact for all rehabilitation matters.
Who has an interest in advocating for rehabilitation?
Many professions are interested in rehabilitation because they are part of multidisciplinary teams. The list extends beyond traditional physiotherapy, occupational therapy, and speech and language therapy. Indeed, most professions will be assisting in rehabilitation, albeit only occasionally, and many professions already have a substantial role to play, including:
- Orthotists, prosthetists, clinical engineers
- Orthopists, ophthalmologists, optometrists, vision rehabilitation workers
- Clinical psychologists, educational psychologists, counsellors
- Nurses, doctors, dieticians, podiatrists
- Social workers
- Audiologists,
- Art, Music, and Drama therapists
Within medicine (i.e. doctors), the recognised speciality is Rehabilitation Medicine, but many other specialities include rehabilitation as part of their training, including:
- Psychiatry, both in psychiatric rehabilitation and learning disability psychiatry
- Geriatrics and paediatrics
- Neurology, Stroke Medicine
- Sports and exercise medicine
The professional organisations for each of these professions will advocate for rehabilitation to some extent. However, they may have a limited sphere of interest circumscribed either to a disease, condition, or profession. Externally, people will inevitably consider their views biased towards their profession or condition.
Many Societies and Associations have an interest in rehabilitation, either generally or from a particular perspective. Examples include:
- British Association of Cardio Pulmonary Rehabilitation (BACPR)
- British Society of Physical and Rehabilitation Medicine (BSPRM)
- Community Rehab Alliance
- Society for Research in Rehabilitation
- British Geriatric Society
- British Association of Chartered Physiotherapists in Limb Absence Rehabilitation (BACPAR)
- Vocational Rehabilitation Association
- British Association of Sport Rehabilitators (BASRaT)
This is only a proportion of the professions, groups, and formal Societies interested in rehabilitation. It illustrates the challenge the Department of Health or NHS-England faces when they want rehabilitation input into a national working party developing rehabilitation policies.
Why is a single rehabilitation organisation needed?
The straightforward answer is, “Just look at how little healthcare attention and resources are directed at rehabilitation!” This answer makes some assumptions I addressed in an editorial in 2015, Rehabilitation – a new approach. Part one: the problems. Then as now, some people might argue that there is no need for more rehabilitation.
Is rehabilitation beneficial?
For many years, people argued that there was no evidence that rehabilitation led to benefits, and many still believe that. I summarised the evidence of benefit in my 2015 article. More recently, I demonstrated the benefit of rehabilitation in an article in 2020. Three articles analysed data from the UKROC database to show the cost-effectiveness of in-patient rehabilitation for people with complex neurological disabilities, people with multiple sclerosis, and people with spinal cord injury. Trials now demonstrate cost-effectiveness, for example, for the ‘Take Charge’ intervention after stroke.
Are resources inadequate?
Other people argue that there are adequate resources. This question is not quickly answered because it is impossible to determine resources devoted to rehabilitation as services are disorganised, diffuse, have many different names, and often lack expertise.
In the 2015 article, I produced much evidence supporting my contention that resources are insufficient. In 2019, the Final Audit Report of Specialist Rehabilitation for Patients with Complex Needs Following Major Injury concluded:
The report highlights a shortage of Specialist Rehabilitation beds across the country and estimates that approximately 330 additional beds are needed to meet the shortfall in capacity and relieve pressure on the acute services across the country
However, the findings also demonstrate the cost-efficiency of rehabilitation following major trauma with mean net lifetime savings in the cost of ongoing care amounting to over £500,000 per patient, so long-term savings would rapidly offset any investment in additional beds to the NHS.
The recent British Geriatric Society publication Reablement, Rehabilitation, Recovery says in the Executive summary, “Many older people are currently excluded from rehabilitation services because of restrictive access criteria, limited capacity or postcode lottery. Systems must act now to address this inequity.”
How could a single organisation advocate for rehabilitation??
Reports have been calling for more and better-resourced rehabilitation services for at least 40 years—my whole professional lifetime—without success. During the last 40 years, almost all medical specialities have burgeoned. When I was in Bristol, there were two neurologists; there are now 34. Over the same period, the number of rehabilitation doctors has grown from one to about five.
One main difference is that neurology had a strong, unified, uniprofessional lobby that delivered a single, consistent, coherent message.
In contrast, rehabilitation did not have a professional society until 1984, when it became a recognised speciality in 1994. The medical rehabilitation society has not yet achieved a single, consistent message. For example, it changed its name in 2022, which will further confuse policymakers, civil servants, and probably many doctors.
Second, many other professions are actively involved in rehabilitation as equals. Indeed, some people equate rehabilitation to physiotherapy, and many people do not accept doctors as having any role to play.
Third, there are still internal debates about the meaning of rehabilitation and what it is. This has an impact; the name of the speciality is not agreed, and some names suggest different ideas about the nature of rehabilitation
Thus, rehabilitation’s failure to gain the attention of senior healthcare managers and policymakers and attract adequate resources from commissioners and politicians may be due to the inability to provide others with a clear, consistent vision of what rehabilitation is and how it helps. Policymakers and commissioners can, therefore, choose the version of rehabilitation that suits them at the time. Moreover, other healthcare system parts may choose other versions, adding to the chaos.
The advantages of a single organisation to represent rehabilitation are:
- The rehabilitation community must discuss and agree on a consistent description of rehabilitation, its scope, purpose, and process.
- The risk of interprofessional rivalry and competition is reduced
- Other people, organisations, and parts of the health service have a single organisation to contact when seeking information and advice on rehabilitation.
- The risk of other organisations shopping around for the opinion or information that suits them best is reduced.
- Patients and patient-based organisations concerned about rehabilitation have a single organisation able to support them.
- It could organise and validate academic training in rehabilitation as an area of professional practice added to an existing healthcare professional qualification.
One cannot be sure that the existence of a single organisation will improve advocating for rehabilitation. Still, our failure to progress over decades when other specialised services have progressed suggests the current lack of an organisation is ineffective.
The next steps in advocating for rehabilitation.
Many professions, people, and organisations have an interest (stake) in rehabilitation as providers, users, or funders. Only a tiny proportion of them are discussed on pages associated with this page. We need to consider our goal before considering how to reach it.
One option is to form an umbrella organisation, with the members being other organisations, not individuals. One example is the Neurological Alliance, “England’s leading coalition of organisations and professional bodies supporting people with neurological conditions.” It has over 90 associated organisations and its mission is “to ensure public policy in health reflects the realities of living with a neurological condition.” It has been successful, for example, in founding the National Neurosciences Advisory Group to advise NHS-England between 2016 and 2022.
Another good example is the Community Rehabilitation Alliance, an informal coalition of over 60 organisations hosted by the Chartered Society of Physiotherapy. It has produced national best practice standards. Its weaknesses are that it has no formal organisation or standing and is mainly interested in community rehabilitation.
A second option is to have a membership organisation open to all professions, patients, and families. This is less likely to be influenced by politically more potent organisations and would reflect rehabilitation’s multiprofessional and holistic nature. It would be more challenging to develop.
The compromise is to have an organisation with both organisational and individual members. One early goal would be to increase individual membership, particularly for people who achieve additional academic qualifications based on material accredited by the Society.
Conclusion
Healthcare emerged as a professionally based activity in the seventeenth century, as the scientific revolution began to produce relevant evidence. Over the first 300 years, the main focus was identifying, diagnosing, and treating specific diseases. As it progressed, the need to consider the consequences of disease became more apparent. The name rehabilitation was attached to this aspect of healthcare in the Great War (1914-18), but it was unrelated to any individual disease and involved many professions. It lacked the scientific evidence base associated with disease-focused healthcare. Thus, it has always been less potent at advocating for resources. Over the last century, significant advances in rehabilitation science have been made, but not in its representation. The only influential multi-professional organisation is the American Congress of Rehabilitation Medicine; there are no similar organisations of significant size or influence in the UK. Contact me if you are interested in moving forward.
