Long-term neurological conditions present a complex interaction of physical, cognitive, communicative and psychosocial problems which cause disability for more than a million people in the UK. Rehabilitation services help to keep people out of acute hospitals and support them in the community or in their own homes, while optimising autonomy and quality of life.
The government’s National Service Framework for Long-Term Conditions, published in 2005, emphasised the need for lifelong, person-centred care and for specialist rehabilitation services, both in hospital and in the community. Until recently, however, there has been relatively little investment in research to understand the rehabilitation needs of this group or cost-effective services to provide for them.
People with complex neurological disability have widely diverse goals for rehabilitation, requiring input from different disciplines and different types of service. Accordingly, they have widely different needs for services, against which the adequacy of service provision must be judged.
Unfortunately, these needs are poorly recorded and largely unreported through current NHS information systems, so the Department of Health has little information about needs for rehabilitation within this group or about how well they are met. This problem is not unique to the UK, but represents a challenge for clinical outcomes research across the world.
The Cicely Saunders Institute at King’s College London leads a national programme for health services research in rehabilitation, the UK Rehabilitation Outcomes Collaborative (UKROC), funded by the National Institute of Health Research. The programme has developed novel tools to record met and unmet needs, and has built up a national clinical register – the UKROC database – to collate information on needs, inputs and outcomes for every patient admitted to specialist rehabilitation services in England.
The British Society of Rehabilitation Medicine (BSRM) is a key collaborator. Findings published from this programme over the last decade include the demonstration that even the most severely disabled patients make gains in independence through specialist rehabilitation that reduce their long-term care needs, providing substantial economic benefit to society.
On average, the cost of the initial rehabilitation programme was offset by savings in the cost of ongoing care within just 16 months, leading to an average saving in lifetime care costs of £1,475,760. This makes specialist rehabilitation one of the most cost-efficient areas of healthcare provision in the NHS.
A strong body of evidence from around the world now demonstrates that early intensive rehabilitation following illness or injury is associated with better functional outcomes and earlier return to independence.
Specialist rehabilitation is one of the most cost-efficient areas of healthcare provision in the NHS
Standards published by the BSRM recommend the early involvement of consultant specialists in rehabilitation medicine within the trauma and acute care pathways to initiate specialist rehabilitation as an integral component care within the major trauma centres and neuroscience networks.
A personalised specialist rehabilitation prescription, which describes the patient’s needs for rehabilitation and makes recommendations for ongoing care, should travel with the patient as they progress along the pathway towards recovery. Within the rehabilitation unit, individualised goal-setting guides the programme to ensure that the priorities of the patient and their family remain the central focus for rehabilitation delivered by a specialist multi-disciplinary team.