Many people are interested in rehabilitation and rehabilitation services: patients, families and friends of patients, employers, social services, patient support organisations, healthcare providers and commissioners, Department of Health and Social Care, politicians, most healthcare professional organisations and the general public. Yet, no single leading organisation represents rehabilitation, for example, politically or in setting standards. Each person or group looks after its sphere. Recently the Community Rehabilitation Alliance formed as an ad hoc group, but it is interested in only one part of rehabilitation. Here I consider why we need a representative organisation and how we might develop one.
Rehabilitation is a problem-solving process carried out within a framework based on a multi-professional team’s biopsychosocial model of illness that aims to optimise a person’s social functioning. It is, necessarily, centred on both the patient’s situation and on their goals. This process requires a bespoke package of care for each patient. At the same time, rehabilitation services are commissioned for patient groups and geographic areas, with often little concern about the needs of individual patients, which will usually span several or even many different commissioned services. No person or organisation ensures that the rehabilitation needs of the population are met comprehensively, without gaps or barriers.
Individual organisations who have a concern about rehabilitation for their patient group, such as people with a particular condition or specific treatment need will contact commissioners or providers when they identify a problem of interest. They will also suggest a solution to satisfy their needs. The suggestions made may be at the expense of other patient groups.
Commissioners and providers will, in turn, receive advice or requests from a range of interested groups, often making quite different and sometimes contradictory suggestions.
This situation follows from the decision in 1948 to expect each area of healthcare specialisation to take responsibility for the rehabilitation of its patients. Spinal cord injury services are an example of a service, the orthopaedic spinal trauma service, taking responsibility for patients presenting to a disease-centred service. The spinal cord injury service also is an example of the problems that arise. For example, patients with non-traumatic spinal cord damage, such as a vascular accident, malignant tumour, or transverse myelitis, were often excluded from spinal cord injury rehabilitation despite having identical clinical features to other patients seen in the service.
The absence of any national attention to rehabilitation has had two consequences over the decades.
The first consequence was that a host of separate rehabilitation services developed, sometimes quite similar, resulting in a patchwork of services, each with its own rules and priorities. Often patients who had a rare disorder and patients who had more than one disorder could not access a service,
The second was the lack of any substantial support for rehabilitation because the same organisation was responsible for both acute care and rehabilitation. Their primary interest was with acute diagnosis and specific, disease-based treatment. Therefore, when resources are limited, acute care always received more resources; rehabilitation has a lower priority.
Over the last twenty years, it is unsurprising that many reports have highlighted the need to improve rehabilitation services through better organisation and giving more resources.
The change started after the realisation that major trauma services needed reorganising. The NHS commissioned specialist inpatient rehabilitation services on a national basis in each country in the UK. This change was associated with the development of the UK rehabilitation outcome collaborative (UKROC), which collected information, although only from England. The commissioning of rehabilitation for patients with complex disabilities has improved rehabilitation for people after trauma and other patients, but the commissioned services are insufficient to meet the need. (here)
Covid-19, with its longer-term post-infection consequences, has, like trauma, highlighted the lack of any coherent commissioning and organisation of rehabilitation services. (here) None of the problems seen after Covid-19 is new. It is the combination of issues that stresses the existing services. This problem has affected many people before Covid-19. It is the sudden large numbers that have drawn attention to the inadequacy.
Last, the commissioning context is (supposed to be) changing. Integrated care systems (ICS), covering health and social care, “are new partnerships between the organisations that meet health and care needs across an area, to coordinate services and to plan in a way that improves population health and reduces inequalities between different groups.” However, there are few details about how they will work, there is no legal foundation because no parliamentary Act has been passed, and most systems are simply in development.
One change is likely. NHS England plans to stop commissioning specialist rehabilitation services nationally. Responsibility will pass to Clinical Commissioning Groups and, in due course, to Integrated Care Systems. The services funded by NHS England are expensive, and individual commissioners may not have any patients needing the costly service at the time of transfer. If they stop paying, the service may well have collapsed financially when faced with a patient needing specialist inpatient care.
Commissioners know very little about rehabilitation. They seem to pay even less attention to it in comparison with acute care services. This ignorance is unsurprising considering the political pressures to treat acutely ill patients and reduce waiting lists in the face of inadequate resources. The Department of Health and Social Care does not provide any good national support to Clinical Commissioning Groups.
It is unrealistic to expect commissioning organisations to acquire the knowledge and understanding of rehabilitation needed to commission effectively. As will be explained later in this section, each area will have its patchwork of unconnected services, many not even labelled rehabilitation services. It will take a person or small team at least a year to develop a reasonable understanding of local services and to develop good relationships with the many separate providing organisations. Unfortunately, the management of NHS services changes so frequently that it will usually be disbanded by the time a team has the necessary understanding.
Within an area commissioned by a Clinical Commissioning Group, there may not be any pre-eminent rehabilitation service to speak on behalf of all rehabilitation. Even if there is, the other rehabilitation services may not trust the lead service to represent all services fairly. Consequently, no commissioning group has access to any expertise locally.
A similar situation appertains nationally. There is no organisation representing rehabilitation. One might expect the Department of Health and Social Care or NHS England to be responsible for holding expertise in rehabilitation. Sadly neither organisation has such expertise to support local commissioners.
Yet there is a desperate need for an organisation which:
- has expertise in rehabilitation, especially in relation to services providing rehabilitation across the whole spectrum of services, interventions, and conditions
- is trusted by all services providing rehabilitation to represent their service fairly in any advice given or discussion had
- is trusted by commissioners to give accurate, honest and unbiassed information and advice
- always takes into acccount the views and experiences of patients, families, and others using or involved with rehabilitation services, especially social services
One might call this organisation the UK National Rehabilitation Community.
The UK National Rehabilitation Community
The term, community, is used in this sense: “the condition of sharing or having certain attitudes and interests in common“. [Oxford English Dictionary] The shared attitudes and interests relate to rehabilitation. A formal organisation is needed to represent all people interested in rehabilitation, including (obviously) the patients and families who need rehabilitation.
Establishing people and organisations who are interested in rehabilitation may appear simple. It is not, because many people and organisations undertaking rehabilitation do not identify themselves as undertaking rehabilitation. Indeed some deliberately use other names such as enablement or intermediate care, to show that they are not undertaking rehabilitation. However, their goals, processes and actions are indistinguishable from rehabilitation.
I have therefore set up this section of the website to list and describe organisations that might have an interest in belonging to a broader community of organisations and people. They might, in due course, collaborate in other spheres, such as education and training, advising commissioners and providers, developing research ideas that cross multiple specialities, representing views of patients and other users of rehabilitation services, and more besides.
The community is potentially huge. At present, I have divided the community into two sections. The first sub-section concerns national professional organisations interested in rehabilitation. The second sub-section discusses national organisations representing users of rehabilitation services, primarily patients.
Each sub-section has its own introductory page before listing the individual organisations.
National professional organisations
National user (patient etc) organisations
This page has set out a case for a community of national organisations that have an interest in rehabilitation. The premise is that rehabilitation is currently not organised, under-resourced, and lacking any political power to overcome these issues. The argument is that setting up a formal group, a community of all organisations, will create an association that will have the political and intellectual power needed to initiate changes in the organisation of services, and to ensure that healthcare resources are allocated appropriately between acute and rehabilitation services. The remaining pages in this section give more detail and supporting information.