King’s researchers have been working to identify those in need of specialist rehabilitation, define their individual needs and tailor their care. Their work is helping the NHS to improve the lives of patients and commission its rehabilitation services cost-effectively. As a result, thousands of patients with severe disabilities are benefitting from specialist inpatient rehabilitation closer to their home and families.

This paradigm shift in specialist rehabilitation has been made possible by nearly two decades of research from a team led by Lynne Turner-Stokes, Professor of Rehabilitation Medicine at the Cicely Saunders Institute in the Faculty of Nursing Midwifery & Palliative Care. Lynne and her team at King’s - Professor Richard Siegert, Dr Stephen Ashford and Dr Mendwas Dzingina – conduct their programme of research through widespread collaboration with clinicians and researchers in the UK and around the world.

Medical advancements mean that NHS professionals are better than ever at saving the lives of those with profound neurological illness or injury. Sadly, some of these patients require care for the rest of their lives. This essential care can cost £3-4 million per patient over the course of a lifetime.

Counting the cost of complex care

In 2001 when the King’s project began, the NHS had no systemic information to record and identify patients requiring complex rehabilitation. Rehabilitation services had traditionally not received the attention, research, and funding that front-line services had. Consequently, there was minimal understanding of both how many patients needed complex rehabilitation and how best to evaluate their care. As a result, NHS commissioning of care was not tailored to an individual’s specific needs and instead used a ‘one size fits all’ approach.

While aware that there was insufficient capacity to meet demand, the NHS could not quantify the shortfall or begin to cost a business case to address it.

With rehabilitation resources stretched, Lynne and her team at Northwick Park Hospital and King’s College London saw the need for a national source of data to match individual patients with their specific rehabilitation requirements. In this way, services could be tailored early so that long-term care costs could be reduced and cost-savings implemented and measured.

They began to develop a system to evaluate the cost-efficiency of rehabilitation. They conducted an initial proof-of-principal study of 300 patients with acquired brain injuries which found that highly dependent patients with the most complex needs were the most cost-effective group to treat, which reflects their higher needs for care and so higher starting care costs. The study proved that it was essential to match rehabilitation to the complexity of patients' needs to achieve the best possible outcome.

Helping specialist rehabilitation across the globe and beyond hospitals

Professor Turner-Stokes then secured funding to set up the UK Rehabilitation Outcomes Collaborative (UK ROC) in partnership with international collaborators in the US, Australia and New Zealand. They developed simple tools that could be used during routine practice to measure: a patient’s need for rehabilitation; the types of care required; and the outcome and its cost-efficiency. The information the team gathered was incorporated into the UK ROC database so that all cases of patients admitted to specialist inpatient services in England were recorded. The UK ROC research found that the findings from the initial proof-of-principal study held true and could be replicated across other conditions in addition to acquired brain injury.

The team’s analysis of over six thousand patients showed that the initial costs of rehabilitation (averaging £37k) were offset in just 18 months by savings in the ongoing costs of care. Highly dependent patients were once again the most cost-effective group to treat, with rehabilitation costs off-set in just over 14 months. The team’s eight-year economic analysis of patients with traumatic brain injury showed that specialist rehabilitation led to average lifetime savings of £666k per patient. The research demonstrated clearly, that despite greater resource requirements, treating patients with complex rehabilitation needs early provides value for money for the NHS.

Historically, the cost of treating a patient is derived from their case-mix classification. But the case-mix classification is based on diagnosis, which is a poor indicator of rehabilitation costs. King’s research team developed a case-mix payment model which considers patients' needs based on a Rehabilitation Complexity Scale. In doing so, they have been able to develop a costing methodology which allows for fair payment for purchasers and providers and is also sensitive to patients needs as they change over time.

The project initially focused on in-patient rehabilitation, but the team have since developed an equivalent tool for community-based rehabilitation. The Needs and Provision Complexity Scale (NPCS) provides a direct-cost measure of met and unmet needs for rehabilitation and social support in the community. In a cross-London study, the NPCS highlighted significant gaps in the provision of community services. Lack of investment in rehabilitation and patient support during the first year after discharge from hospital drove up costs to the NHS in the longer term. Failure to provide rehabilitation and support services in the first year (on average £4.1k per patient) led to increased dependency and excess care and accommodation costs, amounting to much more (on average £14.6k). This suggests that appropriate investment in community rehabilitation services could save the NHS money to the tune of approximately £10k per patient per year.

The work continues

Thanks to the research, rehabilitation services have been brought to the forefront of NHS planning. It has proved influential at both clinical and policy level and has changed the way rehabilitation services are commissioned and provided in the UK. Since 2013, the tools developed by the team have been mandated by NHS England to collect data on every patient admitted for specialist inpatient rehabilitation in England. UK ROC is now commissioned to provide data for care commissioning and quality improvement by NHS England too. The data provides quarterly benchmarking on quality and outcomes for all specialist rehabilitation services. As a result of the research, capacity and access to rehabilitation has been increased for the most vulnerable group of patients.

Since 2017, the UK ROC database has become a clinical registry, collecting identifiable data that allows us to track individual patients along their pathway of care. A national clinical audit was commissioned by the Health Quality Improvement Partnership, which link data with the Trauma Audit and Research Network (TARN) to track patients with complex needs following major trauma to find out if they received the rehabilitation they required. The findings identified a shortage of Specialist rehabilitation beds across England and demonstrated the extent of cost savings to the health and social care system that could be made by increasing the service capacity. Recent work with the National Post Intensive Care Rehabilitation Collaborative has developed and validated tools to improve access to rehabilitation for patients leaving intensive care units

The work continues to influence policy and practice around the globe. The World Health Organisation (WHO) Guidelines for Rehabilitation rely on the team’s evidence for cost efficiency, and other countries are now looking to adopt the research to support their provision of complex rehabilitation services. The tools have been translated and validated into several languages, including Danish and Italian and are being used internationally. Most recently, the team’s costing algorithm for savings in community care has been adapted to demonstrate cost-efficiency in Australia.