Tools and guidance

The full UK ROC dataset represents the inpatient rehabilitation subset of the Long-term Neurological Conditions dataset. 

It comprises demographic information and processes data for each admitted case episode together with the Rehabilitation Complexity Scale (as a measure of rehabilitation needs) and at least one of an agreed set of outcome measures

The following tools were developed and validated during this research programme:

Parameter	Measurement Tools
Needs for rehabilitation	The Rehabilitation Complexity Scale (RCS-E) The Patient Categorisation Tool (PCAT)
Inputs provided to meet those needs	The Northwick Park nursing Dependency Scale (NPDS) The Northwick Park therapy Dependency assessment (NPTDA) The Medical Activities Assessment (MAA)
Outcomes Gains in independence Reduction of care needs	Neurological Impairment Set (NIS) The UK Functional Assessment Measure (UK FIM+FAM) The Northwick Park Care Needs Assessment (NPCNA) Goal Attainment Scaling (GAS)
Cost efficiency	The time taken to offset the initial costs of rehabilitation by reduction in the cost of ongoing care needs, as estimated by the Northwick Park Care Needs Assessment (NPCNA)

All of the tools are free and available to all participating sites.

Details of the tools themselves and scoring manuals are available in the respective websites.

Scope and design

The programme evolved though a time of great change in the NHS. The Health and Social Care Act 2012 introduced the most radical re-organisation and restructuring of the commissioning / funding in the NHS up to that time. Commissioning for specialised services (including specialist rehabilitation) was centralised to NHSE.

To ensure that the developments kept abreast of the radical changes in NHS policy and commissioning, we worked closely throughout the programme with policy developers in successive iterations of:

• Specialised commissioning - subsequently NHS England
• Monitor - subsequently NHS Improvement,
• The Casemix team in NHS Information - subsequently NHS Digital

Costing methodology and Weighted bed day currency

At the outset of the programme, the then Department of Health had accurate data on the costs of specialist rehabilitation. As part of the development of Payment by Results (PbR) a set of Healthcare Resource Groups (HRGs) had been developed for rehabilitation (Chapter V), but costing under this classification was hampered by the lack of ICD diagnostic codes and OPCS Procedure codes to identify rehabilitation activity.

Refence costs were known to be highly inaccurate and did not reflect the differential costs of managing patients with more complex needs.

Instead, the programme develop a costing methodology to identify the costs of rehabilitation at patient level, and a complexity weighted bed day (WBD) currency based on serial (fortnightly) recordings of the Rehabilitation Complexity Scale (RCS-E).

The WBD currency was mandated for specialist level 1 and 2 rehabilitation services in the PbR guidance for 2013/14 and a set of indicative tariffs was included. The document below explains how the currency would be implemented

The weighted bed day currency for specialist rehabilitation (PDF)

Publications describing this development are listed below:

Turner-Stokes L, Sutch S, Dredge R. Healthcare tariffs for specialist inpatient neurorehabilitation services: rationale and development of a UK casemix and costing methodology. Clinical Rehabilitation. 2012;26(3):264-279. doi:10.1177/0269215511417467

Turner-Stokes L, Bill A, Dredge R. A cost analysis of specialist inpatient neurorehabilitation services in the UK. Clinical Rehabilitation. 2012;26(3):256-263. doi:10.1177/0269215511417469

Turner-Stokes L, Sutch S, Dredge R. Healthcare tariffs for specialist inpatient neurorehabilitation services: rationale and development of a UK casemix and costing methodology. Clin Rehabil. 2012 Mar;26(3):264-79. doi: 10.1177/0269215511417467. Epub 2011 Oct 4. PMID: 21971751.

This programme evolved though a time of great change in the NHS. The Health and Social Care Act 2012 introduced the most radical re-organisation and restructuring of the commissioning / funding in the NHS up to that time.

The programme built on work that had been under development in Australia during the preceding decade through the Australian Health Services Research Institute and the Australasian Rehabilitation Outcomes Centre (AROC)

At the end of the programme in 2015 the programme had developed:

• A fully validated set of tools to measure needs, inputs, outcomes and cost-efficiency at patient level.
• A clear picture of where the specialist rehabilitation services were provided in England, and the additional resource requirements for managing patients with more complex needs.
• A casemix and costing model for specialist rehabilitation, including a novel commissioning currency in the form of a multi-level weighted payment model based on serial Rehabilitation Complexity scores
• The UKROC national clinical database had been established and data from over 20,000 case episodes has been collated

A final programme grant report was submitted to the NIHR in 2015. The views expressed in the report are those of the authors and not necessarily those of the NIHR or the NHS. 

• 2015 Executive Summary (PDF)
• 2015 Full Report (PDF)

The primary outcome was an analysis of outcomes and cost efficiency of specialist rehabilitation in a six-year cohort comprising 5739 patients with complex neurological disabilities resulting from a range of conditions

• Turner-Stokes L, Williams H, Bill A, Bassett P, Sephton K. Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: a multicentre cohort analysis of a national clinical data set. BMJ Open. 2016 Feb 24;6(2):e010238. doi: 10.1136/bmjopen-2015-010238. PMID: 26911586; PMCID: PMC4769383.

Subsequent publications have examined the extent of savings in the cost of care when extrapolated over a lifetime.

• Turner-Stokes L, Dzingina M, Shavelle R, Bill A, Williams H, Sephton K. Estimated Life-Time Savings in the Cost of Ongoing Care Following Specialist Rehabilitation for Severe Traumatic Brain Injury in the United Kingdom. J Head Trauma Rehabil. 2019 Jul/Aug;34(4):205-214. doi: 10.1097/HTR.0000000000000473. PMID: 30801440; PMCID: PMC6687405.

The full UK ROC dataset represents the inpatient rehabilitation subset of the Long-term Neurological Conditions dataset. 

It comprises demographic information and processes data for each admitted case episode together with the Rehabilitation Complexity Scale (as a measure of rehabilitation needs) and at least one of an agreed set of outcome measures

The tools that were developed and validated in the course of this programme were as set out in the table below.  

The main output of the programme was the establishment of the UK Rehabilitation Outcomes Collaborative (UK ROC) national clinical registry for specialist rehabilitation in England.

The registry now systematically collates patient level data on needs inputs and outcomes (including cost-efficiency) from all 75 specialist inpatient rehabilitation units in England.

The costing model and commissioning currency developed in this programme is still used by NHS England to pay for in-patient specialist rehabilitation.

The programme has demonstrated that specialist inpatient rehabilitation is one of the cost-efficient interventions in healthcare, with average life-time savings in the cost of ongoing care amounting to between £670k - £1m per patient in the course of their lifetime. 

Project team

Programme Steering Group

• Professor Lynne Turner-Stokes (King's College London and Northwick Park Hospital)
• Prof Richard J Siegert (Auckland University of Technology and King’s College London)
• Prof Kath Eager (University of Wollongong)
  
• Dr Robert Dredge (Keele University)
  

Co-applicants

• Prof Derick Wade (Oxford Centre for Enablement)
  
• Prof Paul McCrone (Institute of Psychiatry, King’s College London)
• Prof Charles Wolfe (King’s College London)
  
• Virginina Jordan (Health and Social Care Information Centre)
• Kellie Blane (NHS England)
• Barbara Howe (NHS England)
• Stephen Sutch (John Hopkins University)
• Stephen Cole (Health and Social Care Information Centre)
• Gareth Dear (Health and Social Care Information Centre)

Principal Research Team

• Keith Sephton (Northwick Park Hospital)
• Heather Williams (Northwick Park Hospital)
• Alan Bill (Northwick Park Hospital)
• Diana Jackson (King’s College London)
• Dr Roxana Vanderstay (King’s College London)

Patient and public involvement

• Ann and Steve Harris (Chairs of the PPI Group)
• The Buckley Family (PPI Group)
• The Macaffey Family (PPI Group)
• Norman Keen (Clinical Reference Group for Specialist Rehabilitation)
• Jayne Pye (Clinical Reference Group for Specialist Rehabilitation)

Department of Health, NHS England, HSCIC

• Peter Howitt (Department of Heath PbR team)
• Adebayo Adekalyoaja (HSCIC)
• Chris Foster McBride (HSCIC)
• Paula Monteith (HSCIC)

Australasian Collaborators

• Frances Simmonds (Australasian Rehabilitation Outcomes Centre (AROC))
  
• Tara Stevermuer (AROC)
• Prof Barbara Singer (University of Western Australia)
• Prof Fary Khan (Royal Melbourne Hospital)
• Prof Natasha Lannin (La Trobe University)
• Kristylee Sharp (Brightwater Group)
• Karla Seaman (Brightwater Group)