North Wales Neurosciences Review Implementation

Neuro-Rehabilitation Workstream

1. Purpose

The purpose of this report is to outline the preliminary work that has been conducted to date to develop the neuro-rehabilitation workstream of the North Wales neurosciences review. This has included a series of meetings with stakeholders to build understanding of the current neuro-rehabilitation care pathway, help define the key issues and explore perspectives on these issues. This has been used to inform the development of a project initiation document (PID). The PID describes how the schedule for this workstream will ensure the timescales for the overall neurosciences project are met. The phase 1 report on the current service will be delivered by March 31st 2009. The phase 2 report will be delivered by 30th April 2009 in line with the overall neurosciences review implementation schedule.

2. Gathering Intelligence

In order to develop a robust project plan, a series of meetings have been held with stakeholders by the project lead and project manager, to gather information on the existing pattern of services, to identify key issues that need to be addressed in order to improve neuro rehabilitation services to implement the Steers review recommendations, and to develop the project plan.

A series of meetings have been held with the following individuals and centres:

Dr Carolyn Young, Walton Centre for Neurology and Neurosurgery

Dr Colin Pinder, Clatterbridge Hospital Neuro-Rehabilitation Unit

Dr Rudi Coetzer, North Wales Brain Injury Team

Dr Matt Makin, Palliative Care Consultant

Mr Kevin Thomas, MND Association

Dr Bob Rafal, University of Bangor

A meeting with the ‘Steers’ review team took place on 13th February and the opportunity was taken to understand the team’s thinking about the perceived needs for N Wales and models of future service provision that could be considered from England.

A further meeting with Dr Anne Chamberlain (Steers Review Member) and clinical colleagues in Leeds has been organised for 6th March 2009.

A number of individuals (appendix1) have been indentified with particular interest and expertise in this area of work and it is intended to hold 2 stakeholder meetings in March and April to sign off the Project plan, further develop current knowledge of services, needs and identify the gaps, and develop options for the development of services to meet the identified need. A final meeting is planned for July to agree the final report for submission to the Project group

  1. Neurorehabilitation

3.1 Prevalence

A study by Drs Elliston and Rodgers in 1996 identified 242 people at that time in N Wales who had suffered significant brain injury. (Representing only 25% of the expected number predicted from national rates)

A study in 1997 by the All Wales Steering Group (Severe head injuries rehabilitation) estimated that there were some 1,000 survivors of brain trauma with long term disabilities living in the North Wales community.

Bob Rafal (2002) estimated that from all three DGHs some 35-45 patients per annum could access an N Wales Rehabilitation Unit with lengths of stay in the range of 6 weeks to 3 months.

3.2 In Patient Care

The Walton Centre provides a limited rehabilitation service for patients admitted and treated through to their service and provides a service for all types of acquired brain who can benefit from its service including trauma, tumour, infection, younger stroke patients and neurological conditions.

The service is commissioned by HCW.

Table 1 Contract value and activity

Contract Value / Contract Baseline Activity / Actual Activity
2008/9 / £18,946 / 38 bed days / 6 bed days to month 9
2007/8 / - / 91 bed days / 22 bed days
2006/7 / - / 91 bed days / -

The Clatterbridge Hospital provides a service for referrals from North Wales Trusts and the Countess of Chester. The service is commissioned by Flintshire LHB on behalf on N Wales.

Table 2 Contact Value and Activity

Contract Value / Contract Baseline Activity / Actual Activity
2007/8 / £390,884 / 13 patients / 938 bed days / 7 patients, 227 bed days

For all Welsh patients discharged from the Clatterbridge service since 2001/2 (65 patients), average length of stay was 63 days (ranging from 7 days to 427 days). Further information is provided in appendix 2.

Criteria for admission for rehabilitation from Clatterbridge:

  • be medically/surgically stable
  • the WNRU consultant considers that, at the time of assessment a formal structured rehabilitation programme at WNRU has the potential to improve the patient's functioning.
  • have specific goals for rehabilitation

neurological conditions can include:

  • brain injury from any cause e.g. trauma, infection, after neurosurgical intervention and other cerebrovascular event
  • patients with multiple sclerosis and other demyelinating conditions
  • patients with acute demyelinating polyneuropathy
  • patients with intracranial tumours who are currently neurologically stable
  • patient with spinal cord injury from medical cause

In the three North Wales DGHs the following arrangements are in place for ABI patients;

  • Wrexham Maelor Hospital-No dedicated rehabilitation beds for ABI. Patients admitted to 20 bed stroke rehabilitation ward for intermediate rehabilitation.
  • Glan Clwyd Hospital-No dedicated ABI rehabilitation beds for ABI. Patients managed by orthopaedic service.
  • Ysbyty Gwynedd-No dedicated ABI rehabilitation beds. Patients managed on Tegid ward by stroke rehabilitation team. A number of community hospitals have consultant beds and these are also used for continuing rehabilitation of ABI patients.

Identifying patients admitted to the three DGHs is problematic and a search was undertaken of patients with the following diagnostic codes.

Table 3 Diagnostic Codes for ABI

Diagnosis / ICD10 Code
Traumatic brain injury / SO6.0 to SO6.9
Intracerebral Haemorrhage / I61.0 to I61.9: I62.0 to I62.9
Anoxic Brain Damage / G93.1
Meningitis / G00.0 to G00.9; G01; G02.8; G03.0 to G03.9
Encephalitis / G04.0 to G04.9; G05.0 to G05.8
Cerebral Aneurysm / I67.1
Subarachnoid Haemorrhage / I60.0 to I60.9

The table in Appendix 3 shows patients admitted in 2007/8 to Wrexham Maelor, Ysbyty Glan Clwyd and Ysbyty Gwynedd with the above diagnoses and with a length of stay greater than 30 days.

The data indicates that there were 64 patients in total with a combined length of stay of 4299 bed days. On the assumption that all these patients would be appropriate for admission to an in-patient neuro-rehabilitation unit, this unit would require approximately 11 to 12 beds.

Note that this analysis is preliminary only. Further work will be conducted to provide a more accurate estimate of need for neuro-rehabilitation. Some of the patients in this sample may not be appropriate for admission to a neuro-rehabilitation unit. It is also possible that some patients may be discharged to community hospitals prior to 30 days and thus not captured in this data.

3.3 Community Brain Injury Service

The North Wales Brain Injury Service provides a multidisciplinary community based service of low intensity, long-term rehabilitation to individuals of any age with moderate to severe acquired (non-progressive) brain injuries including trauma, cerebro-vascular accidents, tumours, CNS infections and younger stroke patients.

Table 4 New Referrals between 1st January 2008 and 31st December 2008

Total referrals received / 174
Total appropriate referrals (accepted) / 163
Total non-appropriate referrals (not accepted) / 11
Of the appropriate referrals:
TBI referrals / 59
Non-TBI (e.g. stroke, tumour, infection) / 70
Not yet coded / 34

Table 5 Staff Establishment (Feb 2009)

Professional Group / WTE
Neuropsychology / Consultant Neuropsychologist (Head of Service) / 1
Neuropsychologists / 3
Psychology / Clinical psychology trainees / 1
Assistant Psychologists / 2
Neurology / Consultant Neurologists / 0.8
Neuropsychiatry / Consultant Neuropsychiatrist / 0.2
Physiotherapy / Physiotherapist / 1
Technical instructor / 1
Occupational Therapy / Occupational Therapists / 1.78
OT students / 0
SLT / SLT / 1
Social Worker / Social Worker / 1
Social worker student / 0
Medical / Registrars/Medical students / 1
Admin / Admin manager / 1
Admin and reception / 1.6

3.4 Key Issues Identified

The key neuro rehabilitation issues identified to date include:

  • The need to map the current pathway for patients discharged from the Walton Centre many of whom are discharged to the care of DGHs rather than to a neuro-rehabilitation service able to meet their needs
  • The need to map/describe the service provided by DGHs to acquired brain injury patients, to quantify this services in terms of patient case mix and resource
  • The need for an agreed definitions set for key terminology relating to the neuro-rehabilitation pathway
  • The need to develop a neuro-rehabilitation care pathway for North Wales, including the key interfaces with other services (e.g. neuro-psychiatry, palliative care, acute care)
  • Quantifying the need for neuro-rehabilitation, and capacity required to meet that need, is not straight forward. There is no specific code for neuro-rehabilitation. Patients are spread across many different locations within the DGHs. A triangulation approach is required that utilises diagnostic coding, academic research into incidence of ABI, and the views of clinicians to help verify estimates. Preliminary data is included above.

4. Palliative Care

The work stream will focus on the needs of patients with ‘rapidly progressing neurological diseases’ and the interface with ‘neuro rehabilitation’.

The main clinical condition in the above is Motor Neurone Disease (MND), Multiple Sclerosis (MS) and Parkinson’s disease (PD).

Applying figures quoted in Jader (Jader, L. An Overview of Neurological Disorder in Wales. Neuroepidemiology 2007; 28: 65-78) for Wales to North Wales 2007 population estimates, it is estimated that there are at least 664 cases of multiple sclerosis, 40 cases of motor neurone disease and 1063 cases of Parkinson’s disease in North Wales. Tables and Figures Nos 1, 2 and 3 in Appendix 4 show average numbers of deaths per year in North Wales Counties and across Wales for these three diseases for the period 1996-2006.

For MND diagnosis typically occurs at the Walton Centre for Neurology and Neurosurgery. 6 monthly neurology outpatient appointments continue at Walton unless patients seen at local DGHS by visiting Consultant.

The Walton Centre has an established multidisciplinary clinic for newly diagnosed patients with MND providing assessment and advice following diagnosis, including Specialist Nurse, Physiotherapist, OT, S&LT, Welfare Rights and MND Association Regional Care Development Adviser.

An informal multidisciplinary team has been established in the former Conwy & Denbighshire NHS Trust area since 2006. Cases are discussed on a bi-monthly basis, identifying future needs and timely, sensitive intervention. St David’s and St Kentigern’s hospices provide day care.

In the former NE Wales Trust area the majority of patients with rapidly progressing MND are referred to Specialist Palliative Care Services. Nightingale House Hospice offers day care and out patient therapy assessments.

Gaps in Current Service Provision include:

  • Delays in diagnosis
  • Fragmentation of services
  • Duplication of referrals
  • Assessment and provision of equipment
  • Inequitable access to services (specialist advice and equipment)
  • Respite and home care
  • Communication between agencies
  • Coordination and anticipatory care
  • No Systematic care plan

Following discussion with Dr Makin and Kevin Thomas it became clear that a detailed process mapping exercise to understand the journey for MND patients has been produced.

The key opportunity for the workstream is to develop a pathway for patients with rapidly deteriorating neurological conditions and the interface with rehabilitation services.

5. Continuing Health Care

Where patients have a ‘primary health need’ the NHS is responsible for funding their health care wherever it is met. There are a number of patients with acquired brain injuries that the NHS is funding their care in private institutions. An analysis of the number, costs and type is being prepared by the 6 N Wales LHBs.

Conwy LHB funds placements at the following institutions:

i) Hafod y Green – Nursing home providing long term care for Acquired Brain Injury clients. Currently 6 clients, 4 joint funded with CCBC.

ii) Eithinog (Leonard Cheshire Disability) (Dual registration care home for Acquired Brain Injury clients). Currently 11 patients, 4 jointly funded with CCBC.

Total Conwy LHB projected costs in 2008/9 £507,376.

6. Project Arrangements

6.1 Project Manager

Luke Archard, Assistant Commissioner for Long Term Conditions and Neurosciences, Health Commission Wales, has been allocated a day a week by Health Commission Wales to provide project management support to Wyn Thomas, project lead.

6.2 Project Initiation Document

A PID has been developed for the neuro-rehabilitation workstream. The document outlines specific objectives for the neuro-rehabilitation workstream as follows:

  • To identify and acquire the key service data and information required to develop and evaluate a range of options for the organization and delivery of neuro-rehabilitation services for North Wales.
  • To develop a long list of options for the organization and delivery of neuro-rehabilitation services for North Wales.
  • To develop and apply a criteria for evaluating the long list of options in order to select a short list for full option appraisal.
  • To conduct an option appraisal and to identify the most appropriate model for the provision of neuro-rehabilitation services for North Wales.
  • Develop a pathway for the care of patients across North Wales with rapidly progressing neurological diseases e.g. motor neurone disease
  • To identify the key issues relating to the interfaces between neuro-rehabilitation and other services, including acute care for head injured patients, neuro-psychiatry services, continuing care and palliative care, and to address these within the option appraisal.

A series of meetings of the neuro-rehabilitation workstream Project Board will be held to direct the work. These meetings will be combined with workshops. The key actions to be achieved in each project meeting are set out below:

Key Actions
Meeting 1 (March 2009) /
  • Finalise and agree Project Initiation Document
  • Agree Project Board ToR
  • Agree work plan and timescales. Establish leads and terms of reference for project working groups to develop the products.
  • 1st draft phase 1 report discussed. (To be signed off virtually by Project Board by March 31st).
  • Hold workshop to identify current patient pathway and service gaps

Meeting 2 (Week beginning 13th April 2009) /
  • Workshop to develop the long list of options for phase 2 report. Selection of short-list. (Phase 2 report completed following this meeting. Signed-off virtually by Project Board by 30 April 2009)
  • Develop and agree criteria and weighting system for option appraisal to inform 3rd phase report
  • Agree date and format of option appraisal workshop (to be held in June)

Meeting 3 (Week beginning 6th July 2009) /
  • Discuss and agree 3rd phase report (product 3)
  • Discuss and agree costed implementation plan (product 4)

7. Appendices

Attached are preliminary data and information to feed into the phase 1 report.

  • Appendix 1 proposed project board membership
  • Appendix 2 estimated number of patients with ABI admitted to North Wales DGHs in 2007/8. Implications for capacity of a neuro-rehabilitation unit for North Wales.
  • Appendix 3 Data on patients discharged from Clatterbridge.
  • Appendix 4 Data on MND, MS and PD patients across N Wales

Appendix 1

Proposed Board Members

Name / Role in project / Organisation / Position
Wyn Thomas / Chair of Project Board and local commissioner / Conwy LHB / CEO
Dr Rudi Coetzer / Expertise in neuro-rehabilitation and knowledge of current North Wales service / North Wales Trust / Consultant Psychologist North Wales Brain Injury Service
Dr Bob Rafael / Expertise in neuro-rehabilitation and knowledge of current North Wales service / University of Bangor / Professor of Clinical Neuroscience and Neuropsychology
Iwan Bonds / Financial oversight / NHS Trust / Management Accountant
Dr Giles Harborne / Expert in neuro psychiatry and knowledge of current North Wales service / North Wales Trust / Chief of Staff (Mental Health Services)
Dr Nigel Martin / Palliative Care / Nightingale House Hospice / Asst medical Director
Iain Mitchell / Expert in therapy services and knowledge of North Wales / North Wales Trust / Director of Therapy Services
Pam Lewis / Expert in therapy services and knowledge of North Wales / North West Wales NHS Trust / Head of Therapy Services
Lowri Welnitschuk / Continuing Care / North West Wales NHS Trust / Senior Nurse
Angela Jones / Palliative Care / North West Wales NHS Trust / Senior Nurse
Ian Langfield / Service Group Commissioner / HCW / Commissioner for Neurosciences
Dr John Hindle / Expertise in rehabilitation and Parkinson’s disease / North West Wales NHS Trust / Consultant
Brian Pickles / Planning expertise and links with Llandudno Hospital project / Conwy LHB / Project Manager Llandudno Hospital Review
Helen Spellman / Voluntary sector expertise and head injury services / Leonard Cheshire Disability / Head of Acquired Brain Injury Division
Huw Thomas / Patient and Public perspective / N/A / Retired CEO GHA
Professor Peter Madison / Expertise in rheumatology and rehabilitation / NWW Trust / Retired Consultant Rheumatologist
Dr Martyn Bracewell / Expertise in neuro rehabilitation / University of Bangor / Senior Lecturer
Chris Jones / Patient and Public perspective / Conwy CHC / Chief Officer
Professor Carolyn Young / Independent expert in rehabilitation medicine / Walton Centre for Neurology and Neurosurgery / Consultant in Rehabilitation medicine
Dr Colin Pinder / Independent expert in rehabilitation medicine / Clatterbridge Hospital, Wirral NHS Trust / Consultant in Rehabilitation Medicine
Dr Jenny Thomas / Independent expert in rehabilitation medicine / Rookwood Hospital, Cardiff and Vale NHS Trust / Consultant in Rehabilitation Medicine
Dr David Abankwa / Independent expert in rehabilitation medicine / Abertawe Bro-Morgannwg University NHS Trust / Consultant in Rehabilitation Medicine
Kevin Thomas / Patient perspective / Welsh Neurological Alliance / North Wales Care Development Officer
Luke Archard / Project Management Support / HCW / Assistant Commissioner for Neurosciences

Appendix 2

Year / Admissions
2001-2 / 1
2002-3 / 11
2003-4 / 10
2004-5 / 13
2005-6 / 8
2006-7 / 10
2007-8 / 3
2008-9 / 14
Grand Total / 70

Admissions of Welsh Patients to Clatterbridge NRU 2001/2 to 2008/9

Diagnoses of Welsh patients admitted to Clatterbridge NRU between

2001/2 and 2008 /9

Diagnosis / Number of Patients
Brain Stem Infarct / 1
Cerebellar infarct / 1
CVA/TBI / 1
GBS / 2
Hydrocephalus, syringomyelia / 1
Hypoxic Brain injury / 1
ICH / 10
ICH, Hydrocephalus, antiphospholipid syndrome / 1
Meningioma / 1
MS / 5
Peripheral Neuropathy / 1
Post. Fossa epidermoid cyst / 1
SAH / 6
Spinal cord Contusion / 1
Spinal cord infarct / 1
Spinal cord tumour / 1
Stroke / 3
TBI / 27
Not recorded / 5
Grand Total / 70

Appendix 3