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  • 1. 18/10/2010 Draft Modernising Services for People with Long Term Neurological Conditions in Western Sussex Future provision of specialist services for longer-term healthcare for people with neurological conditions in Western Sussex The Future of Donald Wilson House June 2006 Comments to John Parsons Page 1 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 2. 18/10/2010 Draft Foreword Long-term neurological conditions have a significant impact on our communities: In Western Sussex there are approximately1: • 35,000 (1 in 6) people living with a neurological condition that has a significant impact on their lives, of which 28,000 are able to manage their lives on a day-to-day basis • 3,500 people are disabled by their neurological condition • 3,000 people care for someone with a neurological condition • 2,000 people (1% of the population) are diagnosed with a neurological condition every year. • 1,225 people require help for most of their daily activities • Approximately one third of disabled people living in residential care have a neurological condition Neurological conditions are the most common cause of serious disability and have a major, but often unrecognised, impact on health and social services: • 10% of visits to Accident and Emergency Departments are for a neurological problem • 17% of GP consultations are for neurological symptoms • 19% of hospital admissions are for a neurological problem requiring treatment from a neurologist or neurosurgeon. Mostly stroke, epilepsy, dementia, headache, head injury and multiple sclerosis. The National Service Framework for Long Term Conditions sets out a vision for the future pattern of care for neurological diseases and presents a good opportunity to re-design services in Western Sussex. Existing specialist services are provided from Donald Wilson House, on the St Richard's Hospital campus but the building is rapidly approaching the end of its useful life. An opportunity is therefore presented to re-build a modern facility as part of a re-designed integrated service to meet the needs of those with longer-term neurological conditions in line with the new vision. The proposals contained in this document outline plans to modernise health services for people with long-term neurological conditions in Western Sussex in the most effective way to meet the needs identified and ensure that the right kinds of services are available. Sara Weech Project Director and Director of Planning, Partnerships and Commissioning Western Sussex Primary Care Trust June 2006 1 Based on “a brief review of the numbers of people in the UK with a neurological condition”, The Neurological Alliance, 2003. The NHS does not collect this information. The figures quoted in this report are based on information provided by the Neurological Alliance and have been used by the House of Commons as the most reliable available. Comments to John Parsons Page 2 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 3. 18/10/2010 Draft Contents 1. What is this document about? 2. Who has been involved in the development of these proposals? 3. Background to the proposals 4. What do we want to achieve? 5. What are the options we have considered? 6. What is being proposed? 7. What are the implications arising from the proposals? a. Service users and carers b. Staff c. Resources 8. Having your say 9. Glossary of Terms 10. Distribution Appendices I – Project Team II – Stakeholders III - Existing Services IV - Needs Assessment V - Service Model (Best Practice) VI – Development Opportunities Supplements 1. NSF Standards 2. Good Practice Guide – Service Components 3. Neuro-Rehabilitation Providers – London and the South East of England 4. List of Neurological Conditions 5. Reference Costs 6. Rehabilitation Bed Survey 2005 Comments to John Parsons Page 3 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 4. 18/10/2010 Draft Modernising Services for People with Long Term Neurological Conditions in Western Sussex Future provision of specialist services for longer-term healthcare for people with neurological conditions in Western Sussex The Future of Donald Wilson House What is this document about? This document makes proposals to modernise services for people with long term neurological conditions living in the local areas covered by Western Sussex PCT including the towns of Arundel, Bognor, Chichester and Midhurst. The document describes why we are proposing to make changes, the different options for change we have considered, the preferred option being proposed, why we think this proposal will provide an improved service for people living in Western Sussex, the timescales for making changes and how we plan to engage people in the development of services. Who has been involved in the development of these proposals? These proposals are the result of discussions among key partners involved in the care of people with long term neurological conditions, including Western Sussex Primary Care Trust, the Royal West Sussex (St Richard’s Hospital) NHS Trust), West Sussex County Council Social and Caring Services and representatives of the community and voluntary sector. They have also been developed in discussion with the Western Sussex Longer Term Health Network, the West Sussex Acquired Brain Injury Forum and the Sussex Neurological Network. These groups involve a range of stakeholders including representatives from the above organisations and the community and voluntary sector. A project team and advisory group was established in April 2006 (see Appendix I) and a wide range of stakeholders has been consulted throughout the project (see Appendix II). A number of open space events about longer-term health have been organised in recent years, covering subjects including Acquired Brain Injury, Older Health, Younger Health and Carers. Views expressed at these events have been used to help shape these proposals. Background to the proposals The National Service Framework for Long Term Conditions sets out a vision for the future pattern of care for neurological diseases and presents a golden opportunity to re-design services in Western Sussex. Comments to John Parsons Page 4 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 5. 18/10/2010 Draft Existing specialist services are provided from Donald Wilson House, on the St Richard's Hospital campus but the building is rapidly approaching the end of its useful life. An opportunity is therefore presented to re-build a modern facility as part of a re- designed integrated service to meet the needs of those with longer-term neurological conditions in line with the new vision. Terms of Reference “to identify options to optimise the replacement of Donald Wilson House in the context of the National Service Framework and to make recommendations to Western Sussex Primary Care Trust by June 2006”. Strategic Context The local NHS is accountable for leading local progress against the standards included in the National Service Frameworks (NSFs). All NSFs contain standards relating to longer term care and carry the expectation that new service models will be designed and implemented in partnership with other statutory agencies and the community and voluntary sectors. Neurological conditions (including strokes) have a significant impact on the health of our communities and on the resources of local services. The Hurstwood Park Neurological Centre (currently based at Haywards Heath) provides a high quality specialist assessment and treatment service for traumatic and serious acute neurological cases across most of Sussex. The Wessex Neurological Centre (based at Southampton University Hospital) provides a similar service for the residents of Western Sussex. Existing specialist neuro-rehabilitation provision includes: • Acute rehabilitation: Hurstwood Park Neurological Centre (for most of Sussex) and the Wessex Neurological Centre (for Western Sussex). • Specialist rehabilitation: Sussex Rehabilitation Centre at Southlands Hospital and Donald Wilson House on the St Richard's Hospital campus in Chichester. • General rehabilitation: stroke units at local acute hospitals. Currently there is no community-based specialist neuro-rehabilitation, although local community rehabilitation teams have strong links with the hospital-based centres and units, including specialist occupational therapy and physiotherapy. Access to neuro-rehabilitation across the area is variable. A Sussex-wide (including Brighton & Hove) Neurological Network has been established to review the care pathway and service provision for neurological conditions. A Wessex Neurological Network is being established with a similar remit for the central south coast area. Comments to John Parsons Page 5 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 6. 18/10/2010 Draft Related Strategies It is important to set this proposal in the context of existing networks and initiatives (e.g. the Transforming Chronic Care Programme, The Future Ahead Programme for Acquired Brain Injury, Local Implementation Teams for Long Term Conditions, Child Health and Older People's Health, Valuing Independence and Independence_First (West Sussex strategies for Physical and Sensory Impairment and Acquired Brain Injury) and to ensure that any proposals for change are developed in way that promotes integrated care which is centred on the needs of individuals. Existing Services Donald Wilson House was built in the 1970’s to provide specialist services for people with longer-term neurological conditions, mainly from Western Sussex. Further details of existing services are included at Appendix III It has served our local community well over the years but the building is now approaching the end of its useful life. The St Richard’s Hospital site development plan includes proposals to re-build Donald Wilson House on the hospital campus and to dispose of the land on which it currently stands. Capital receipts from the sale of the land have been earmarked for the new building, which will provide a modern specialist facility for the next 30 years. What do we want to achieve? The Long-term (Neurological) Conditions National Service Framework (NSF) was launched in March 2005. The NSF aims to transform the way health and social care services support people to live with long-term neurological conditions. Key themes are: •independent living •care planned around the needs and choices of the individual •easier, timely access to services •joint working across all agencies and disciplines involved. The themes are presented in 11 quality standards: 1.A person-centred service 2.Early recognition, prompt diagnosis and treatment 3.Emergency and acute management 4.Early and specialist rehabilitation 5.Community rehabilitation and support 6.Vocational rehabilitation 7.Providing equipment and accommodation 8.Providing personal care and support 9.Palliative care Comments to John Parsons Page 6 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 7. 18/10/2010 Draft 10.Supporting family and carers 11.Caring for people with neurological conditions in hospital or other health and social care settings The principles of the NSF are also relevant to service development for other long- term conditions. This NSF is a key tool for delivering the government’s strategy to support people with long-term conditions outlined in the White Paper “Our Health, Our Care, Our Say” and the NHS Improvement Plan: Putting People at the Heart of Public Services. It applies to health and social services working with local agencies involved in supporting people to live independently, such as providers of transport, housing, employment, education, benefits and pensions. The new West Sussex Longer-Term Health Network is currently being established and is developing a local vision. The draft vision is as follows: An integrated longer-term health network should ensure that: •Up to date information about longer-term health and health services is freely and readily accessible to everyone in a form of their choosing and confidentiality of personal health information is guaranteed. •Access to emergency advice and/or treatment is available immediately and access to non-emergency advice and/or treatment is available within a defined maximum period. •Regular health screening and assessment is available to everyone. •A choice of practitioners and providers is available to everyone within easy reach of home/school/work and around the clock. •Health services are provided safely and all health practitioners are accredited and regularly updated. •Health and social care are provided as an integrated service (including case management) •Education, learning and employment support is offered to individuals, families and carers and longer-term health in the workplace is subject to specific standards. •Opportunities to influence decisions about health services and case management are readily and freely accessible to everyone. •“Gold Standard” end of life care is provided. What are the options we have considered? Six main options have been identified: 1. Do nothing 2. Replace Donald Wilson House “like with like” 3. Replace Donald Wilson House “like with like” and extend to full 7 day service 4. Replace Donald Wilson House with “vertical expansion” (i.e. with a greater range of specialist services) 5. Replace Donald Wilson House with “lateral expansion” (i.e. covering a wider geographical area) 6. Replace Donald Wilson House with “vertical and lateral expansion” (i.e. with a greater range of specialist services and covering a wider geographical area) Comments to John Parsons Page 7 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 8. 18/10/2010 Draft The advantages and disadvantages of each option are shown below: Options Advantages Disadvantages Option 1 Do nothing Not feasible, due to age of building and site development plan Option 2 Replace Donald Wilson House “like with like” Option 2a • Proximity to Specialist • None identified On the RWS campus Medical Services • Good links with acute wards • Community accessibility is reasonably good for Western Sussex residents • Ease of transition • Capital costs identified as part of site development plan • No change to current revenue costs Option 2b Bognor Bognor Elsewhere (NHS) • Richard Hotham Unit is • Worse access to acute Richard Hotham Unit, Bognor available for re-use specialty support Regis • Less central for Western Sussex Rehabilitation Centre, Sussex Shoreham Southlands • Environment – not purpose • Potential for financial built economies of scale • Would require significant refurbishment (Est. cost £250,000) • Would require re-negotiation with PFI contractor Southlands • Distance and access difficulties, esp for families/carers • Likely to increase demand for non-NHS placements • Lack of acute speciality support at Southlands • Environment – not purpose built Option 2c • Diversity of provision • Lack of alternative provision Elsewhere (non-NHS) • No known plans to develop new services within the non- statutory sector Option 3 Replace Donald Wilson House “like with like” and extend to full 7 day service • As Option 2 • Increased revenue • Earlier transfer of head investment required (Est: injuries and spinal cord £xxx) injury earlier from the acute wards • More effective use of acute beds • Reduction in high cost Comments to John Parsons Page 8 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 9. 18/10/2010 Draft placements Option 4 Replace Donald Wilson House with “vertical expansion” (i.e. with a greater range of specialist services) • As Option 2 • Increased revenue investment required (Est: £xxx) Option 5 Replace Donald Wilson House with “lateral expansion” (i.e. covering a wider geographical area) • As Option 2 • Increased revenue investment required (Est: £xxx) Option 6 Replace Donald Wilson House with “vertical and lateral expansion” (i.e. with a greater range of specialist services and covering a wider geographical area) Option 6a • As Option 2 • Increased revenue On the RWS campus investment required (Est: £xxx) The Business Case undertaken by the Royal West Sussex (St Richard’s Hospital) NHS Trust in March 2006 also considered a number of additional options that were discounted after detailed appraisal. These included: • Transfer to existing on-site accommodation Would require significant refurbishment costs (est. £500,000) • Refurbishment of existing building Would require significant building costs (est. £900,000) • Closure of existing service Would result in significant “bed-blocking” on acute wards, increased length of stay, MRSA risks and additional “placement costs” for longer term care • Re-provision of services through the Community Team Clinical severity of client group would not be suitable or affordable for community management What is being proposed? It is proposed that Donald Wilson House be re-provided using the existing service model on the St Richard’s Hospital campus. Capital receipts from the sale of the land have been earmarked for the new building, which will provide a modern specialist facility for the next 30 years. Further recommendations: Comments to John Parsons Page 9 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 10. 18/10/2010 Draft Extended Opening to a 7-day Service • The potential to extend to full 7-day opening should be explored further as part of the review of acute bed occupancy. If there is sufficient evidence that acute bed day costs can be reduced by more than the cost of extended opening then this should be considered as a development at that stage. Continued Transfer to Community-based Care • Links with community and primary care teams should be further strengthened to ensure that optimum care is provided in community settings and that beds at Donald Wilson House are used to maximum efficiency. Philosophy of Care • Services provided at Donald Wilson House should be viewed as part of an “integrated care pathway” for longer-term neurological conditions, in accordance with the full range of standards set out in the National Service Framework. • Managers and clinicians at Donald Wilson House should fully participate in the longer-term health network for West Sussex (and contribute their expertise to the Neurological Networks for Sussex and Wessex) with the aim of integrating clinical services with other statutory and non-statutory (community and voluntary service) provision, centred on the needs of the individual. • Patients, Carers and Community and Voluntary Sector representatives should be more fully involved in all future service developments at Donald Wilson House. What are the implications arising from the proposals? Implications for service users and carers Service users and carers would benefit from a safer and more modern environment and would have a greater say in future service developments under these proposals. Implications for staff Existing staff would transfer to the new building with no change to their existing terms and conditions of service under these proposals. Resources The cost of provision at Donald Wilson House compares favourably with published Reference Costs: Published reference costs (for NHS Cost of provision at Donald Wilson and Non-NHS provision) for 2005 House (2004/5) £180-386 per day £189 per day for 2004/5 Comments to John Parsons Page 10 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 11. 18/10/2010 Draft Income and expenditure for 2004/5 Income & Expenditure 2004/5 £’000 Income 1,245 Direct Costs (668) Indirect Costs (197) Overheads (215) Depreciation (42) Rate of Return (45) Sub total of expenditure (1,166) Net Income/(expenditure) 80 Further information to follow, including: • Service Agreement price for existing service: • Cost of extension to full 7 day service • Comparison with Richard Hotham Unit (PFI) • Impact of Payment by Results (to be completed by Kevin Ross) Supplemetary information Cost Effectiveness Can severely disabled patients benefit from in-patient neuro-rehabilitation for acquired brain injury? http://jnnp.bmjjournals.com/cgi/content/extract/77/5/570 The evidence for the cost-effectiveness of rehabilitation following acquired brain injury http://www.rcplondon.ac.uk/pubs/ClinicalMedicine/0401janfeb/0401_jan_ed3.htm Having your say Comments are invited on these proposals. To respond to this consultation you can write to us at: Longer Term (Neurological) Conditions Consultation Western Sussex Primary Care Trust Amberley Building 9 College Lane Chichester PO19 6FX Or email: enquiries@wsx-pct.nhs.uk Comments may also be made via the website at www.westernsussexhealth.com/dwh We would also be pleased to meet with local groups of patients, carers and voluntary sector organisations. If you would like us to present our proposals to you, please contact us on 01243 770794 or email enquiries@wsx-pct.nhs.uk . Glossary of Terms Neurological Disorders that affect the central nervous system (brain, brainstem and cerebellum), the peripheral nervous system (peripheral nerves - cranial nerves included), or the conditions Comments to John Parsons Page 11 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 12. 18/10/2010 Draft autonomic nervous system (parts of which are located in both central and peripheral nervous system). National Service This is a Government document that lays out clear standards for the care and treatment of people with long-term conditions which must be adhered Framework for to within areas covered by Primary Care Trusts. Long Term (Neurological) Conditions Primary Care Trust The PCT is responsible for the planning and securing of health services and improving the health of the local population. (PCT) Private Finance A scheme that enables private (non government) finances to fund public service projects. This usually means private companies provide the capital Initiative (PFI) for building projects and the NHS leases back the facility over a period of time. Stakeholder An individual or organisation with an interest in the subject. Stakeholders can be organisations such as local authorities or individuals such as people who use services or local residents. Integrated Care An integrated care pathway (ICP) is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with a specific Pathway condition or set of symptoms move progressively through a clinical experience to positive outcomes. Distribution This document will be distributed to statutory and voluntary organisations with an interest in long-term neurological conditions in Western Sussex (including people who use these services). The local authority Health Scrutiny Committee and the Patient and Public Involvement Forums of Western Sussex Primary Care Trust and West Sussex Health and Social Care NHS Trust have been briefed on this development. More information is available on the website at www.westernsussexhealth.com/dwh This document can be provided upon request in different formats for people with special needs. Please contact us on 01243 770794 or email enquiries@wsx- pct.nhs.uk. You can also access the document on the Western Sussex Primary Care Trust’s website at www.westernsussex.nhs.uk. Western Sussex Primary Care Trust (PCT) takes responsibility for most of the planning and provision of health care for local people and has responsibility for managing almost all the health funding for the local population. The PCT serves a population of over 185,000 people living in Chichester, the Manhood Peninsula, Bognor Regis, Arundel and the five villages, and the area north of the Downs, including Midhurst, Petworth and Loxwood. Comments to John Parsons Page 12 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 13. 18/10/2010 Draft APPENDICES AND SUPPLEMENTS Comments to John Parsons Page 13 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 14. 18/10/2010 Draft Appendix I Project Team Role Name Notes Programme Director Jayne Boyfield Acting Director of Adult Services and Longer Term Health, Western Sussex PCT - replacing Jill King from 08 May 06 Project Director Sara Weech Director of Planning, Partnerships and Commissioning, Western Sussex PCT Project Manager John Parsons Service development Manager, Western Sussex PCT Project Adviser Helen Horswell Clinical Leader for Longer Term Neurological Conditions, Western Sussex PCT Project Accountant Kevin Ross Commissioning Finance Manager, Western Sussex PCT Advisory Group Primary Care Helen Horswell Clinical Leader for Longer Term Neurological Conditions, Western Sussex PCT Medical Specialist Margaret Rice-Oxley Consultant Physician, St Richard’s Hospital Rehabilitation Specialist Raylene Fastier ABI Specialist Mark Searle ABI Co-Ordinator, West Sussex Psychology Specialist Veronica Bradley Public Health Specialist Jane Taylor Public Health Specialist, Western Sussex PCT Social & Caring Services David Underwood Clinical Pathways Specialist Helen Sampson Provider Services Nick Fox Director of Planning, Royal West Sussex (St Richard’s Hospital) NHS Trust Community & Voluntary Sector Marie O’Brien Community representative, West Sussex ABI Network Expert Patient Lindsey Steer Community representative, West Sussex ABI Network Comments to John Parsons Page 14 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 15. 18/10/2010 Draft Appendix II Stakeholders Ref Contact Address Notes 1 Individuals Jayne Boyfield Jayne.boyfield@aaw.nhs.uk Dr Imogen Stephens Imogen.stephens@wsx-pct.nhs.uk Simon Hammans Simon.hammans@rws-tr.nhs.uk Jane Goldingham Jane.goldringham@westsussex.gov. Project Manager, Direct uk Payments & Individual Budgets Simon Thomas Hurstwood Park simon.thomas@bsuh.nhs.uk MS Nurse DWH Sue Wood Sue.wood@westsussex.gov.uk Louise Hughes Louise.hughes@wsx-pct.nhs.uk 2 Organisations Western Sussex PCT www.westernsussex.nhs.uk Royal West Sussex (St Richard’s Hospital) NHS Trust www.rwst.nhs.uk Sussex Partnership NHS Trust www.sussexpartnership.nhs.uk Sussex Ambulance Service www.sussamb.nhs.uk Adur, Arun & Worthing PCT(T) www.healthinaaw.nhs.uk Horsham & Chanctonbury PCT www.hcpct.nhs.uk Mid Sussex PCT www.mspct.nhs.uk Crawley PCT www.crawleypct.nhs.uk E Hants PCT www.easthampshirepct.nhs.uk Portsmouth City PCT www.portspct.nhs.uk N Hants PCT www.bvhpct.nhs.uk Sussex Specialist Commissioning Sarah Jones www.healthinaaw.nhs.uk/index.cfm? page=10158 Surrey & Sussex SHA www.surreysussexsha.nhs.uk Carole Mattock West Sussex County Council www.westsussex.gov.uk WSCC Health Scrutiny Committee www.westsussex.gov.uk/ccm/naviga tion/your-council/scrutiny-and- select-committees/health-scrutiny/ Chichester District Council www.chichester.gov.uk Arun District Council www.arun.gov.uk Comments to John Parsons Page 15 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 16. 18/10/2010 Draft 3 Partnerships West Sussex PSI/ABI Policy & Development Group Sue Wood Healthier Chichester www.protopage.com/chichester Arun Health & Social Care LPG West Sussex Adult Services Partnership David Underwood 4 Networks Sussex Neuro Network AAW appointing new www.westernsussexhealth.com/neur Bob Deans Manager o Amanda Fadero Wessex Neuro Network Sue Wight www.suht.nhs.uk/index.cfm? Programme Manager - Long Term articleid=221 Conditions & Unscheduled Care Telephone: 02380 725571 Julie Pearce Associate Clinical Director/Lead Nurse Hampshire & Isle of Wight Strategic Health Authority Telephone: 02380 725445 Mobile: 07884 473463 Mark Satchell LTCNet (West Sussex) protopage.com/longtermconditions LTCNet (Western Sussex) ABINet www.protopage.com/abiprogramme Epilepsy Network www.protopage.com/epilepsy Sussex ABI Forum www.sabif.info End of Life Care Network (Western Sussex) www.protopage.com/endoflife Western Sussex Transport & Access Network Julian Hart www.protopage.com/transport 5 Community & Voluntary Sector MS Society www.mssociety.org.uk/about_us/aro und_the_uk/sussex_surrey/chichest er_bog.html Headway www.headway.org.uk/GroupsBranch es/default.asp? step=4&groupsBranchesid=61 SCOPE http://www.scope-west- sussex.org.uk Rosary Cottage Marie O’Brien www.rosarycottage.com BIRT Camilla Herbert www.birt.co.uk/index.asp UKABIF Comments to John Parsons Page 16 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 17. 18/10/2010 Draft www.ukabif.org.uk Stroke Association www.stroke.org.uk/information/local _services_directory/south_east/inde x.html St Wilfrid’s Hospice www.stwh.co.uk Chichester & District CVS rmcgarva@chichester-cvs.org.uk Directory of Community www.chichester-cvs.org.uk and Voluntary Groups 2005 http://www.rwstgp.org.uk/ globalsite/Chichester_CVS_ Directory_2005.pdf Arun CVS hilary.spencer@btconnect.com www.arun.gov.uk/cgi- bin/a2zshow.pl? qtype=ID&qstring=74 Comments to John Parsons Page 17 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 18. 18/10/2010 Draft Appendix III Existing Services Donald Wilson House is a 12-bed unit, based on the St Richard’s Hospital campus, providing specialist rehabilitation for people with neurological conditions or complex needs. The unit enables patients to reach their optimum function and achieve best quality of life as they perceive it. The interdisciplinary team works closely together with patients and their families to achieve realistic patient-centred goals with the aim of returning the patient home and integrating back into community life. The patients autonomy is respected and they are encouraged to make decisions and choose direction in life where possible. We work closely with family, carers and community services to facilitate co-ordinated service on discharge to community care. Referrals are accepted from general practitioners and medical consultants on behalf of West Sussex communities for those who are between 16 and 65 years of age and require specialist rehabilitation. The following services are provided: • Acute rehabilitation refers to people who do not need to be in an acute medical or surgical ward but are still likely to be needing the investigative and specialist resources of an acute general hospital (and therefore need to be on an acute hospital site) (6 beds available) • Post-acute rehabilitation refers to people who do not regularly need the services of an acute hospital but who continue to need intensive specialist rehabilitation and are not yet ready to move back home or to an intermediate rehabilitation unit or to a long-term residential unit (6 beds available) • Out-patient rehabilitation refers to people who are living at home and attending a rehabilitation department or unit for specific programmes of rehabilitation therapy and treatment) • Vocational Rehabilitation The following professional services are provided as part of a multi-disciplinary team: • Chiropody/Podiatry • Clinical Neuropsychology • Dietetics • Occupational Therapy • Orthotics/Prosthetics • Physiotherapy • Rehabilitation Medicine • Social Work • Specialist Nursing • Speech and Language Therapy • continence advisor • Pharmacy • Stroke Support Worker Compare with service components Admission Criteria (Post Injury): • Patients can be admitted 1-2 weeks after injury • Patients can be admitted 2-6 weeks after injury • Patients usually admitted 6-12 weeks after injury • Maximum length of time in years after injury that patient can be admitted: no stipulation on max number of years post injury Eligibility for nursing care – the unit will accept patients who have: • nursing requirements • a requirement for 24 hour nursing care • ongoing neurological disease or dementia • little or no motivation to return to employment and/or independent living • persistent vegetative state/minimally responsive state • no functional understanding of language Comments to John Parsons Page 18 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 19. 18/10/2010 Draft • cognitive impairment • psychiatric problems • challenging behaviour • severe physical disability Additional services include: • Medico-legal assessments/reports undertaken • Training placements available for qualified staff (Professions accepted: Doctors) • Training placements available for undergraduate students (Professions accepted: Nurses, • Occupational therapists, Physiotherapists, Speech and Language Therapists) Client Group Monophasic illness • Stroke • Traumatic Brain Injury (TBI) • Spinal Chord Injury (SCI) • Soleus (SOL) • Encephalitis • Guillain-Barré Syndrome • Neuropathies • Multiple Fractures • Amputees Progessive diseases • Multiple Sclerosis • Parkinson’s Disease • Cerebral Palsy • Myopathy/Dystrophy • Spina Bifida Current Pathway • Admission to DWH • Full MDT assessment, goals identified – treatment starts • Home visit • Train family – 24 hr approach • Visit home • Weekend leave • D/c from in pt, start day pt (approx x3 per week) • ↓ day pt, ↑ productivity/leisure (eg work, CRT, day centre, clubs) Neurology Pathways • Epilepsy • Pain Clinic • Headache • TIAs and strokes http://www.rwstgp.org.uk/site/neuro/ssg.html Western Sussex Referral website - www.rwstgp.org.uk/index.html Length of Stay Average Length of Stay (days) Progressive Monophasic Total 2000 Average 17 56 39.3 Comments to John Parsons Page 19 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 20. 18/10/2010 Draft Range 3-83 4-211 3-211 2003 Average 15 36 25.8 Range 3-86 1-234 1-234 2004 Average 19.8 24.9 24.9 Range 1-180 1-465 1-465 http://www.westernsussex.nhs.uk/library/Rebuild%20DWH.ppt Primary Diagnosis Codes used for HRGs A34 and S31 Icd10Primary Description HRG A34 G819 Hemiplegia, unspecified 485 R298 Other spec symptoms signs involv nervous/musculoskel systs 51 G919 Hydrocephalus, unspecified 26 G939 Disorder of brain, unspecified 7 G912 Normal-pressure hydrocephalus 1 Total 570 Icd10Primary Description HRG S31 R418 Oth/unsp sympt & signs involv cognitive funct & awareness 150 R410 Disorientation, unspecified 146 Total 296 Comments to John Parsons Page 20 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 21. 18/10/2010 Draft Appendix IV 1 Needs Assessment There are 10 million (1 in 6) people in the UK living with a neurological condition that has a significant impact on their lives. For Western Sussex this equates to approximately 35,000 people. Someone in the UK is diagnosed with a neurological condition every minute. This adds up to 600,000 people (1% of the UK population) a year. For Western Sussex this equates to approximately 2,000 people. Approximately 350,000 people require help for most of their daily activities This will include most people with motor neurone disease (MND), many of those with primary and secondary progressive multiple sclerosis (MS) and other progressive neurodegenerative conditions, those with severe brain injuries, people who have had a serious stroke (including brain haemorrhage) or those who have advanced dementia. For Western Sussex this equates to approximately 1,225 people Over one million people are disabled by their neurological condition They may need help with some daily tasks and are likely to be out of full time employment. This figure includes most people with congenital conditions, such as cerebral palsy, those who have recently had a brain injury or illness, those who have had a stroke, some people living with MND, MS, Parkinson’s disease and forms of dementia. It also includes some of those with epilepsy or migraine. For Western Sussex this equates to approximately 3,500 people. Over eight million people are affected by a neurological condition, but are able to manage their lives on a day-to-day basis This figure includes a number of people living with MS, Parkinson’s disease and many more rarely diagnosed conditions, people recovering from stroke or head injury, people with essential tremor and other motor difficulties. It also includes many people living with migraine and chronic tension-type headache and many of those managing their epilepsy. Many of the people affected in this way will already have experienced an acute phase of their illness and often live with pain, the side effects of medication and the possibility that their condition could worsen, in some cases catastrophically or fatally, at any time. They will often need to adapt their lifestyle that can have an adverse effect on their quality of life. Though these people will often be in employment and with caring responsibilities of their own, there will be periods of time when they may need to be cared for or require help to carry out their daily activities; when they are unable to work or to carry out their lives to the full. For Western Sussex this equates to approximately 28,000 people. Neurological conditions are the most common cause of serious disability and have a major, but often unrecognised, impact on health and social services • 10% of visits to Accident and Emergency Departments are for a neurological problem • 17% of GP consultations are for neurological symptoms • 19% of hospital admissions are for a neurological problem requiring treatment from a neurologist or neurosurgeon. Mostly stroke, epilepsy, dementia, headache, head injury and MS. Each year 200,000 children have an acquired brain injury 30% of the people attending accident and emergency departments for head injury are children of 15 years and under About one quarter of people aged between 16 and 64 with chronic disability have a neurological condition For Western Sussex this equates to approximately 31,500 people. Approximately one third of disabled people living in residential care have a neurological condition However, most neurologically disabled people are not in residential care, but live at home, usually cared for by relatives. Approximately 850,000 people in the UK care for someone with a neurological condition Carers often have to sacrifice their own work or leisure time. For example, family caregivers provide on average between five and 12 hours of care per day to people with moderate and severe MS. Partners caring for someone with Parkinson’s disease are 40% less likely to get out of the house at least once a week or to take a holiday than their peers. Carers’ health is often compromised – about half suffer physical injuries such as a strained back and half experience stress-related illness. Carers may be all Comments to John Parsons Page 21 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 22. 18/10/2010 Draft ages. Whilst many carers are elderly, a significant number of children and young people are carers of people with neurological conditions. For Western Sussex this equates to approximately 3,000 people. 1 Based on “a brief review of the numbers of people in the UK with a neurological condition”, The Neurological Alliance, 2003. The NHS does not collect this information. The figures quoted in this report are based on information provided by the Neurological Alliance and have been used by the House of Commons as the most reliable available. Comments to John Parsons Page 22 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 23. 18/10/2010 Draft Appendix V Service Model (Best Practice) Service Components (see Appendix III) An ideal unit • On acute site but separate • A bit like a house, bedrooms away from day area. • Quiet • Contented families do not feel “waiting for rehab” • Allows team to start rehab on the acute wards before transfer and prevent avoidable complications, and frequent input to acute wards by consultant in rehabilitation medicine and team • Frequent need for investigations/ procedures requiring acute surgeons help eg suprapubic catheters • Oxford rebuilt their unit on the acute site as a weekly count of bedblockers showed many were neurological and to move into slightly less acute beds but on the acute site would save £750,000 a year • Previously it had been stand alone on the outskirts of Oxford and had to be very medically stable before transfer • This allows more relaxed MRSA policy • Harrowlands was too remote and could not recruit Consultant sessions or keep psychologist? Could miss remedial complications e.g. Hydrocephalus Care Pathway 1. Onset 2. Awareness 3. GP Visit 4. Referral 5. Consultation 6. Diagnosis 7. Treatment and management (Getting the Best from Neurological Services, Neurological Alliance, 2003) References 1. A Review of UK & International Frameworks for Longer Term Care - NHS Institute for Improvement & Innovation:http://www.institute.nhs.uk/NR/rdonlyres/039D50E5-207B-43A0-AA4E-F92E9638A95C/0/ Reviewofinternationalframeworks.pdf 2. NHS Networks – Long Term Conditions - http://www.networks.nhs.uk/3.php 3. Supporting People with Long Term Conditions - http://www.dh.gov.uk/assetRoot/04/09/98/68/04099868.pdf 4. Self Care – A Real Choice: Self Care Support – A Practical Option - http://www.dh.gov.uk/assetRoot/04/10/17/02/04101702.pdf 5. Getting the Best from Neurological Services, Neurological Alliance, 2003 - http://www.neural.org.uk/pages/online_ordering/GettingtheBestfromNeurologicalServices.asp 6. Action on Neurology - http://www.natpact.nhs.uk/uploads/2005_Apr/Action_On_Neurology.pdf 7. NICE - http://www.nice.org.uk/page.aspx?o=dg.cns 8. Self Help UK - http://www.self-help.org.uk/selfhelp.cfm 9. Change Agent Team - http://www.changeagentteam.org.uk/index.cfm?pid=318 NELH NatPact Google Scholar Scottish Needs Assessment Programme Northumberland Linden Lodge, Nottingham Leicester Brain Injury Comments to John Parsons Page 23 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 24. 18/10/2010 Draft Comments to John Parsons Page 24 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 25. 18/10/2010 Draft Appendix VI Development Opportunities Ideas for Future Developments (from MDT staff at DWH) 1. All inpatient beds to become 7 day to improve throughput from acute beds and to assist in managing crises. 2. Potential for therapy services to expand to provide a limited weekend service for inpatients. 3. Development of a triage system for community/LTC patients that are identified as needing admission to MRO clinic. MDT to have triage outreach service pre-admission – may delay discharge from DWH e.g. equipment needs, carer training, adaptations 4. MDT outpatient clinics – linked to MRO neurology and disability clinics. Using the effective model of the Parkinson’s Disease clinic for other LTCs such as MS. One-stop assessment and review clinic to assess patients changing needs and ensure timely intervention by the MDT. Potential for therapists to inreach from community. 5. MDT therapy outpatient service – to enable optimum management of patients with LTCs, preventing crises and admission, and ensuring timely provision and access to expert treatment and advice 6. Resource/facility for support groups e.g MS Society, ABI group. Raise profile – access to MDT – potential to generate income 7. “Guest appearance” clinics e.g. continence adviser, orthotics, benefits advisers 8. Relatives clinics for daypatient and outpatient carers/families 9. Team base for neuro-therapy teams, inreaching to acute wards and outreaching to community. Comments to John Parsons Page 25 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 26. 18/10/2010 Draft Supplement 1 NSF Standards - Long Term Conditions NSF Standards Assessment 1. A person-centred service People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves. 2. Early recognition, prompt diagnosis and treatment People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible. Specialist Services 3. Emergency and acute management People needing hospital admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities. Rehabilitation 4. Early and specialist rehabilitation People with long-term neurological conditions who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist settings to meet their continuing and changing needs. When ready, they receive the help they need to return home for ongoing community rehabilitation and support (‘home’ in this context means the place where the individual chooses to live, which may be their own accommodation or may be a residential or care home). 5. Community rehabilitation and support People with long-term neurological conditions living at home are to have ongoing access to a comprehensive range of rehabilitation, advice and support, to meet their continuing and changing needs, to increase their independence and autonomy and help them to live as they wish.‘Home’ in this context means the place where the individual chooses to live, which may be their own accommodation or may be a residential or care home. 6. Vocational rehabilitation People with long-term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support, to enable them to find, regain or remain in work and access other occupational and educational opportunities. 7. Providing equipment and accommodation People with long-term neurological conditions are to receive timely, appropriate assistive technology/ equipment and adaptations to accommodation to support them to live independently, help them with their care, maintain their health and improve their quality of life. Maintenance 8. Providing personal care and support Health and social care services work together to provide care and support to enable people with long-term neurological conditions achieve maximum choice about living independently at home. Health and social care services work together to provide care and support to enable people with long-term neurological conditions achieve maximum choice about living independently at home. 9. Palliative care The framework was established by a Macmillan GP facilitator at John Taylor Hospice in Birmingham and has now been rolled out across the UK as part of national policy. The GSF improves the supportive palliative care of people towards the end of their life, and is used by primary health care teams to optimise the care provided for people living in the community, so that most care is delivered at home or to people attending GP surgeries. It is now being piloted in care homes and will be piloted in community hospitals in the future. It is being used increasingly with people who have long-term conditions. The facilitator is willing to share a number of resources. 10. Supporting family and carers Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right. 11. Caring for people with neurological conditions in hospital or other health and social care settings People with long-term neurological conditions are to have their specific neurological needs met while receiving care for other reasons in any health or social care setting. Comments to John Parsons Page 26 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 27. 18/10/2010 Draft Supplement 2 Good Practice Guide – Service Components (National Service Framework for Long Term Conditions) Acquired brain injury • Skilled, efficient paramedical services • Knowledgeable, skilled hospital emergency services • Easy access to skilled neurosurgical advice and intervention • Acute/sub-acute residential interdisciplinary rehabilitation service • Direct support, education and guidance for carers from acute to community • Access to provision for severe behavioural disorders • Access to provision for people who are slow to respond • Access to provision for those in a persistent vegetative state • Non-residential interdisciplinary rehabilitation service • Access to specialist vocational rehabilitation and support • Community-based assessment and review service, including provision for slow-to-resolve mild injuries • Community-based long-term management service for those with persistent severe deficits, including skilled care and a variety of options for supported living • Respite care • Links with mental health services Motor neurone disease • Links between primary care, neuroscience centres and local neurology providers for referral and rapid access to diagnostic tests • Prompt easy access to skilled neurological advice and intervention • Specialist assessment and review service • Prompt and ongoing access to rehabilitation in the community • Co-ordination of care and single point of contact for information • Direct support, education and guidance for carers from initial presentation and throughout the course of the condition • Timely access to specialist interventions, e.g. non-invasive positive pressure ventilation (NIPPV), gastrostomy as appropriate • Rapid provision of equipment and adaptations to accommodation to meet rapidly changing needs • Rapid provision of personal care packages with skilled carers, including intensive long-term provision • Hospital emergency and acute services equipped to meet neurological needs if admitted to hospital • Access to respite care • Access to palliative care Parkinson’s disease • Links between primary care, and local neurology/care of older people with expertise in Parkinson’s disease and tertiary neurology providers for referral, diagnosis and treatment • Prompt easy access to skilled advice and intervention • Co-ordination of care and single point of contact for information • Direct support, education and guidance for carers from initial presentation and throughout the course of the condition • Referral and ongoing access to rehabilitation in the community • Local specialist assessment and review service including regular review of medication • Timely access to specialist interventions for symptom management, e.g. neurosurgery, gastrostomy as appropriate • Provision of equipment and adaptations to accommodation to meet changing needs • Provision of personal care packages with skilled carers, including intensive long-term provision • Hospital emergency and acute services equipped to meet neurological needs if admitted to hospital • Access to respite care • Access to palliative care Epilepsy • Links between primary care, local neurology providers and specialist neuroscience centres for referral, access to assessment, shared care and prescribing • Prompt easy access to skilled neurological advice, diagnostic investigations and ongoing management • Specialist assessment and/or review service appropriate to needs of particular groups with epilepsy, e.g. individuals with learning disabilities • Knowledgeable, skilled hospital emergency services, particularly for recurrent seizures and status epilepticus Comments to John Parsons Page 27 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 28. 18/10/2010 Draft • Timely access to surgical interventions as appropriate • Single point of contact for information, and co-ordination of care as needed, including during transitions such as adolescence to adulthood • Direct support, education and guidance for carers from initial presentation and throughout the course of the condition • Provision of training in all health and social care settings in the management of epilepsy • Access to appropriate supported living, long-term residential care and respite care delivered by appropriately trained personnel for particular groups with epilepsy Multiple sclerosis • Links between primary care, local neurology providers and specialist neuroscience centres for prompt referral, access to diagnostic tests and treatment • Prompt easy access to skilled neurological advice and intervention • Specialist assessment and review service, e.g. for disease-modifying drugs, treatment of relapses • Direct support, education and guidance for carers from initial presentation and throughout the course of the condition • Single point of contact for information, and co-ordination of care as needed • Prompt initial and ongoing access to rehabilitation in inpatient facilities and the community as needed • Timely access to specialist interventions, e.g. spasticity management, gastrostomy, as appropriate • Hospital emergency and acute services equipped to meet neurological needs if admitted to hospital • Provision of equipment and adaptations to accommodation to meet changing needs • Provision of personal care packages with skilled carers, including intensive long-term provision • Access to appropriate long-term care facilities and respite care with appropriately trained staff • Access to palliative care Spinal cord injury • Skilled, efficient paramedical services • Knowledgeable, skilled hospital emergency services • Prompt access to skilled spinal cord injury advice on multi-system management and initial care • Prompt access to acute spinal cord injury centre (SCIC) with comprehensive interdisciplinary rehabilitation service • Direct support, education and guidance for carers from acute to community • Provision for graded discharge from residential rehabilitation service • Non-residential interdisciplinary rehabilitation service • Access to specialist vocational training • Assessment and ongoing review service based in SCIC or in the community on an outreach basis as appropriate • Hospital acute services linked to SCIC and staff supported to meet neurological needs if admitted to hospital with another medical problem • Community-based long-term management service for those with persistent severe deficits, including skilled care and a variety of options for supported living • Respite care with appropriately trained staff Comments to John Parsons Page 28 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 29. 18/10/2010 Draft Supplement 3 Neuro-Rehabilitation Providers – London and the South East of England Sussex Rehabilitation Centre http://www.nhs.uk/england/hospitals/showhospital.aspx?id=RDRSX http://www.southdowns.nhs.uk/index.cfm?request=b1003022&action=showServiceDetail&service=125 Priory Unsted Neuro-rehabilitation Centre, Godalming, Surrey http://www.prioryhealthcare.co.uk/Find-a-centre/Facilities/Priory-Unsted-Neuro-rehabilitation-Centre Royal Hospital for Neuro-Disability, Putney, London http://www.rhn.org.uk The Children's Head Injury Service Address: Chailey Heritage Clinical Services Beggar's Wood Road North Chailey Nr. LEWES East Sussex BN8 4JN Harley Reed Consulting Ltd Address: 51 Havelock Road Hastings East Sussex TN34 1BE Priory Health Care Egerton Road Address: 18 Egerton Rd Bexhill on sea East Sussex TN39 3HH Donald Wilson House Address: Rehabilitation Unit St Richards Hospital Spitalfield Lane Chichester West Sussex PO19 6SE Priory The Vines Address: Innhams Wood Crowborough East Sussex TN6 1TE Swanborough House Address: Swanborough Drive Brighton East Sussex BN2 5PH Headway Hurstwood Park Address: Headway House Jackies Lane Newick Lewes East Sussex BN8 4QX Lishman Brain Injury Unit Address: Maudsley Hospital Denmark Hill London SE5 8AZ Oxford Centre for Enablement Address: Windmill Road Oxford Oxon OX3 7LD Phoenix Rehabilitation Centre Address: Royal Hospital Haslar Gosport Comments to John Parsons Page 29 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 30. 18/10/2010 Draft Hampshire PO12 2AA Wolfson Neurorehabilitation Centre Address: Copse Hill Wimbledon London SW20 0NQ Dorset Brain Injury Service Address: Brain Injury Service Poole Hospital Longfleet Road Poole Dorset DT1 2RD Community Neurorehabilitation Team, South West Kent PCT Address: Intermediate Care Centre Sevenoaks Hospital Hospital Road Sevenoaks Kent TN13 3PG Neurological Rehabilitation Unit, London Address: National Hospital for Neurology and Neurosurgery Queen Square London Greater London WC1N 3BG Neuro-rehabilitation services East Kent Address: Buckland Hospital Coombe Valley Road Dover Kent CT17 0HD Donald Wilson House Address: Rehabilitation Unit St Richards Hospital Spitalfield Lane Chichester West Sussex PO19 6SE Bradley Unit Neurorehabilitation Service Address: Woking Community Hospital Heathside Road Woking Surrey GU22 7HS Royal Hospital for Neuro-disability Address: West Hill Putney London SW15 3SW Blackheath Brain Injury Rehabilitation Centre Address: 80-82 Blackheath Hill London SE10 8AB Peartree House Rehabilitation Address: 8a Peartree Avenue Bitterne Southampton HANTS SO19 7JP The Children's Trust Address: Tadworth Court Tadworth Surrey KT18 7RY Comments to John Parsons Page 30 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 31. 18/10/2010 Draft Headway Dorset Address: Tridale Bungalow, Fourways Constitution Hill Road Poole Dorset BH14 OPZ Harley Reed Consulting Ltd Address: 51 Havelock Road Hastings East Sussex TN34 1BE Priory Unsted Park Neuro-rehabilitation Centre Address: Munstead Heath Road Godalming Surrey GU1 1UW East Kent Hospital School Service Address: City View Franklyn Rd Canterbury Kent CT28PT Priory Health Care Egerton Road Address: 18 Egerton Rd Bexhill on sea East Sussex TN39 3HH Headway Head Injury Support, East Kent Address: Headway House The Sustain Centre Ethelbert Road Canterbury Kent CT1 3NG The Regard Partnership Address: The Annexe Wren Park 10 Salmons Lane Whyteleafe Surrey CR3 0AL Defence Medical Rehabilitation Centre, Headley Court Address: Epsom Surrey KT18 6JN Shelley Park Neuro Care Centre Address: 32 Florence Road Boscombe Bournemouth Dorset BH5 1HQ Priory The Vines Address: Innhams Wood Crowborough East Sussex TN6 1TE Raphael Medical Centre Address: Hollanden Park Coldharbour Lane Hildenborough Tonbridge Kent TN11 9LE Comments to John Parsons Page 31 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 32. 18/10/2010 Draft Swanborough House Address: Swanborough Drive Brighton East Sussex BN2 5PH Headway Hurstwood Park Address: Headway House Jackies Lane Newick Lewes East Sussex BN8 4QX Milestones Neurorehabilitation Clinic Address: 39A South Avenue Egham Surrey TW20 8HQ CHOICES Brain Injury Service Address: Unit 4 11 Mowll Street London SW9 6BG Team Medical Solutions Address: 169 High Street Southampton Hants SO14 2BY Comments to John Parsons Page 32 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 33. 18/10/2010 Draft Supplement 4 List of Neurological Conditions A • Acquired Epileptiform Aphasia • Acute Disseminated Encephalomyelitis • Adrenoleukodystrophy • Agenesis of the corpus callosum • Agnosia • Aicardi syndrome • Alexander disease • Alpers' disease • Alternating hemiplegia • Alzheimer's disease • Amyotrophic lateral sclerosis (see Motor Neurone Disease) • Anencephaly • Angelman syndrome • Angiomatosis • Anoxia • Aphasia • Apraxia • Arachnoid cysts • Arachnoiditis • Arnold-Chiari malformation • Arteriovenous malformation • Asperger's syndrome • Ataxia Telangiectasia • Attention Deficit Hyperactivity Disorder • Autism • Auditory processing disorder • Autonomic Dysfunction B • Back Pain • Batten disease • Behcet's disease • Bell's palsy • Benign Essential Blepharospasm • Benign Focal Amyotrophy • Benign Intracranial Hypertension • BFPP • Binswanger's disease • Blepharospasm • Bloch-Sulzberger syndrome • Brachial plexus injury • Brain abscess • Brain injury • Brain tumor • Spinal tumor • Brown-Sequard syndrome Comments to John Parsons Page 33 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 34. 18/10/2010 Draft C • Canavan disease • Carpal tunnel syndrome (CTS) • Causalgia • Central pain syndrome • Central pontine myelinolysis • Centronuclear myopathy • Cephalic disorder • Cerebral aneurysm • Cerebral arteriosclerosis • Cerebral atrophy • Cerebral gigantism • Cerebral palsy • Charcot-Marie-Tooth disease • Chiari malformation • Chorea • Chronic inflammatory demyelinating polyneuropathy (CIDP) • Chronic pain • Chronic regional pain syndrome • Coffin Lowry syndrome • Coma, including Persistent Vegetative State • Congenital facial diplegia • Corticobasal degeneration • Cranial arteritis • Craniosynostosis • Creutzfeldt-Jakob disease • Cumulative trauma disorders • Cushing's syndrome • Cytomegalic inclusion body disease (CIBD) • Cytomegalovirus Infection D • Dandy-Walker syndrome • Dawson disease • De Morsier's syndrome • Dejerine-Klumpke palsy • Dejerine-Sottas disease • Dementia • Dermatomyositis • Diabetic neuropathy • Diffuse sclerosis • Dysautonomia • Dysgraphia • Dyslexia • Dystonia E • Early infantile epileptic encephalopathy • Emoism syndrome Comments to John Parsons Page 34 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 35. 18/10/2010 Draft • Empty sella syndrome • Encephalitis • Encephalocele • Encephalotrigeminal angiomatosis • Epilepsy • Erb's palsy • Essential tremor F • Fabry's disease • Fahr's syndrome • Fainting • Familial spastic paralysis • Febrile seizures • Fisher syndrome • Friedreich's ataxia G • Gaucher's disease • Gerstmann's syndrome • Giant cell arteritis • Giant cell inclusion disease • Globoid cell Leukodystrophy • Guillain-Barré syndrome H • HTLV-1 associated myelopathy • Hallervorden-Spatz disease • Head injury • Headache • Hemifacial Spasm • Hereditary Spastic Paraplegia • Heredopathia atactica polyneuritiformis • Herpes zoster oticus • Herpes zoster • Hirayama syndrome • Holoprosencephaly • Huntington's disease • Hydranencephaly • Hydrocephalus • Hypercortisolism • Hypoxia I • Immune-Mediated encephalomyelitis • Inclusion body myositis • Incontinentia pigmenti • Infantile phytanic acid storage disease Comments to John Parsons Page 35 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 36. 18/10/2010 Draft • Infantile Refsum disease • Infantile spasms • Inflammatory myopathy • Intracranial cyst • Intracranial hypertension J • Joubert syndrome K • Kearns-Sayre syndrome • Kennedy disease • Kinsbourne syndrome • Klippel Feil syndrome • Krabbe disease • Kugelberg-Welander disease • Kuru L • Lafora disease • Lambert-Eaton myasthenic syndrome • Landau-Kleffner syndrome • Lateral medullary (Wallenberg) syndrome • Learning disabilities • Leigh's disease • Lennox-Gastaut syndrome • Lesch-Nyhan syndrome • Leukodystrophy • Lewy body dementia • Lissencephaly • Locked-In syndrome • Lou Gehrig's disease (See Motor Neurone Disease) • Lumbar disc disease • Lyme disease - Neurological Sequelae M • Machado-Joseph disease (Spinocerebellar ataxia type 3) • Macrencephaly • Megalencephaly • Melkersson-Rosenthal syndrome • Menieres disease • Meningitis • Menkes disease • Metachromatic leukodystrophy • Microcephaly • Migraine • Miller Fisher syndrome • Mini-Strokes Comments to John Parsons Page 36 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 37. 18/10/2010 Draft • Mitochondrial Myopathies • Mobius syndrome • Monomelic amyotrophy • Motor Neurone Disease • Motor skills disorder • Moyamoya disease • Mucopolysaccharidoses • Multi-Infarct Dementia • Multifocal motor neuropathy • Multiple sclerosis • Multiple system atrophy with postural hypotension • Muscular dystrophy • Myasthenia gravis • Myelinoclastic diffuse sclerosis • Myoclonic encephalopathy of infants • Myoclonus • Myopathy • Myotonia congenita N • Narcolepsy • Neurofibromatosis • Neuroleptic malignant syndrome • Neurological manifestations of AIDS • Neurological sequelae of lupus • Neuromyotonia • Neuronal ceroid lipofuscinosis • Neuronal migration disorders • Niemann-Pick disease • Nonverbal learning disorder O • O'Sullivan-McLeod syndrome • Occipital Neuralgia • Occult Spinal Dysraphism Sequence • Ohtahara syndrome • Olivopontocerebellar atrophy • Opsoclonus myoclonus syndrome • Optic neuritis • Orthostatic Hypotension • Overuse syndrome P • Paresthesia • Parkinson's disease • Paramyotonia Congenita • Paraneoplastic diseases • Paroxysmal attacks • Parry Romberg syndrome Comments to John Parsons Page 37 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 38. 18/10/2010 Draft • Pelizaeus-Merzbacher disease • Periodic Paralyses • Peripheral neuropathy • Persistent Vegetative State • Pervasive developmental disorders • Photic sneeze reflex • Phytanic Acid Storage disease • Pick's disease • Pinched Nerve • Pituitary Tumors • PMG • Polio • Polymicrogyria • Polymicrogyria, bilateral frontoparietal • Polymyositis • Porencephaly • Post-Polio syndrome • Postherpetic Neuralgia (PHN) • Postinfectious Encephalomyelitis • Postural Hypotension • Prader-Willi syndrome • Primary Lateral Sclerosis • Prion diseases • Progressive Hemifacial Atrophy • Progressive multifocal leukoencephalopathy • Progressive Sclerosing Poliodystrophy • Progressive Supranuclear Palsy • Pseudotumor cerebri Q R • Ramsay-Hunt syndrome (Type I and Type II) • Rasmussen's encephalitis • Reflex sympathetic dystrophy syndrome • Refsum disease • Repetitive motion disorders • Repetitive stress injury • Restless legs syndrome • Retrovirus-associated myelopathy • Rett syndrome • Reye's syndrome S • Saint Vitus dance • Sandhoff disease • Schilder's disease • Schizencephaly • Septo-optic dysplasia • Shaken baby syndrome • Shingles Comments to John Parsons Page 38 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 39. 18/10/2010 Draft • Shy-Drager syndrome • Sjogren's syndrome • Sleep apnea • Sleeping sickness • Sotos syndrome • Spasticity • Spina bifida • Spinal cord injury • Spinal cord tumors • Spinal muscular strophy • Steele-Richardson-Olszewski syndrome, see Progressive Supranuclear Palsy • Spinocerebellar ataxia • Stiff-person syndrome • Stroke • Sturge-Weber syndrome • Subacute sclerosing panencephalitis • Subcortical arteriosclerotic encephalopathy • Sydenham chorea • Syncope • Syringomyelia T • Tardive dyskinesia • Tay-Sachs disease • Temporal arteritis • Tethered spinal cord syndrome • Thomsen disease • Thoracic outlet syndrome • Tic Douloureux • Todd's paralysis • Tourette syndrome • Transient ischemic attack • Transmissible spongiform encephalopathies • Transverse myelitis • Traumatic brain injury • Tremor • Trigeminal neuralgia • Tropical spastic paraparesis • Trypanosomiasis • Tuberous sclerosis U V • Vasculitis including temporal arteritis • Von Hippel-Lindau disease (VHL) W • Wallenberg's syndrome • Werdnig-Hoffman disease Comments to John Parsons Page 39 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 40. 18/10/2010 Draft • West syndrome • Whiplash • Williams syndrome • Wilson's disease Y Z • Zellweger syndrome Top of the Document Comments to John Parsons Page 40 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 41. 18/10/2010 Draft Supplement 5 Reference Costs NHS Reference Costs http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPo licyAndGuidanceArticle/fs/en?CONTENT_ID=4133221&chk=TxHkqo NHS Costing Manual http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/FinanceAndPlanning/NHSCostingManual/fs/e n Service Agreement price for existing service: (from RWS Summary Report 21/03/06) 2004/5 Days £ Adur, Arun and Worthing 253 47,817 Western Sussex 3,432 648,648 Border practices 213 40,257 Horsham & Chanctonbury 9 1,701 Crawley 4 756 TOTAL 3,911 739,179 = £189 per day Actual 2004/5 £1,182,382 = £302 per day 2005/6 (+5.3%) £1,245,048 = £318 per day National Average Costs (2005) NHS £180-386 per day Non-NHS £152-320 per day http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPo licyAndGuidanceArticle/fs/en?CONTENT_ID=4133221&chk=TxHkqo NHS Reference Costs NHS Trusts Interquartile Range of Unit No. of Service No. of National Costs Data Inpatient Rehabilitation Service Average Lower Upper Submissi Code Labels Occupied Unit Cost Quartile Quartile ons Beddays £ £ £ RH10A Stroke Patients : Adult 243,233 213 175 281 54 RH11A Brain Injury Patients : Adult 62,417 395 262 430 39 RH11C Brain Injury Patients : Child 1,090 473 504 642 2 RH12A Other Neurological Patients : Adult 108,517 280 211 377 39 RH12C Other Neurological Patients : Child 177 211 144 212 3 RH20 Elderly Patients 702,398 172 165 237 55 RH30 Other Patients 251,268 221 176 301 56 PCTs Interquartile Range of Unit No. of Service No. of National Costs Data Inpatient Rehabilitation Service Average Lower Upper Submissio Code Labels Occupied Unit Cost Quartile Quartile ns Beddays £ £ £ RH10A Stroke Patients : Adult 141,961 211 186 235 35 RH11A Brain Injury Patients : Adult 10,721 337 193 309 21 Comments to John Parsons Page 41 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 42. 18/10/2010 Draft RH12A Other Neurological Patients : Adult 51,664 253 210 309 25 RH20 Elderly Patients 1,454,217 184 157 214 86 RH30 Other Patients 318,342 202 175 255 44 NHS Trust/PCT Combined Interquartile Range of Service No. of National Unit Costs No. of Data Inpatient Rehabilitation Service Average Lower Upper Submission Code Labels Occupied Unit Cost Quartile Quartile s Beddays £ £ £ RH10A Stroke Patients : Adult 385,194 212 175 263 89 RH11A Brain Injury Patients : Adult 73,138 386 213 388 60 RH11C Brain Injury Patients : Child 1,090 473 504 642 2 RH12A Other Neurological Patients : Adult 160,181 271 209 343 64 RH12C Other Neurological Patients : Child 177 211 144 212 3 RH20 Elderly Patients 2,156,615 180 157 219 141 RH30 Other Patients 569,610 210 175 271 100 http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPo licyAndGuidanceArticle/fs/en?CONTENT_ID=4133221&chk=TxHkqo Comparison with non-statutory sector Interquartile Range of Service No. of National Unit Costs No. of Data Inpatient Rehabilitation Service Average Unit Lower Upper Submission Code Labels Occupied Cost Quartile Quartile s Beddays £ £ £ RH11A Brain Injury Patients : Adult 3,184 320 299 366 8 RH11C Brain Injury Patients : Child 144 608 608 608 1 RH12A Other Neurological Patients : Adult 793 255 219 281 2 RH20 Elderly Patients 16,412 185 173 197 3 RH30 Other Patients 4,662 152 153 299 5 http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuida nceArticle/fs/en?CONTENT_ID=4133221&chk=TxHkqo Top of the Document Comments to John Parsons Page 42 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254
  • 43. 18/10/2010 Draft Supplement 6 Rehabilitation Bed Survey 2005 http://www.bgsnet.org.uk/Mar06NL/8_rehabilitation.htm The BGS Council in England became anxious during the middle of 2005, that many trusts were closing rehabilitation beds in response to financial pressures. To assess the extent of the problem a survey was performed. There has been a major reduction in NHS rehabilitation bed numbers with more than half of respondents (52%) citing finance as the reason for closure. There were only 5 trusts who were going to re-provide NHS rehabilitation beds elsewhere in either the acute hospital or in a new build. 1399 (18.2%) of the 7688 rehabilitation bed have closed in the survey period with slightly more of the community rehabilitation beds closing despite that being considered to be an excellent setting for intermediate care. 58% of the closures were permanent. The increase in residential intermediate care beds in the districts surveyed does not get anywhere near to the numbers of NHS rehabilitation beds closed, even when combined with the creation of transitional care beds for care home waiters and delayed discharge patients. The majority of residential rehabilitation beds have been established in residential care home settings (6 / 10) with nursing home settings less common (3/10) and one non acute hospital site has provided a setting for intermediate care. Very few medical sessions have been provided to cover the intermediate care beds. Only 15 GP sessions, 4 junior doctor sessions and 5 consultant PAs were reported to cover the 10 new intermediate care sites in the survey. Transitional care for care home waiters was only established in 2 districts in a nursing home setting. There has been an increase in consultant geriatricians’ presence on acute medical units. It is recognised in the BGS in England that a number of Acute physician posts are being filled by geriatricians. In contrast however, there was only a small increase in the number of consultant geriatrician sessions being deployed in Intermediate care. The cover there is usually being provided by GPs. Many rehabilitation beds that have closed may not have provided particularly intensive rehabilitation, particularly if therapy resources were limited. The widespread closure of rehabilitation beds could potentially have released the therapy time from those wards to augment the therapy provided to patients in the remaining care of the elderly beds. There was, however no evidence that this was happening as the 21% of sites who achieved increased therapy provision to the remaining beds was matched by 18% who, despite the rehabilitation bed closures, suffered a reduction in the therapy provision to the other rehabilitation patients. The results of the survey were used in a Dept of Health discussion with Ian Philp to highlight to both Ian and ministers, our concern regarding the diminishing provision of rehabilitation facilities to older people. There is real fear that this trend will continue unchecked under the Payment by Results policy unless the tariffs set for the rehabilitation treatments of older people reflect the need for comprehensive assessment and treatment. James Barrett Chair BGS England Council Comments to John Parsons Page 43 of 43 John.parsons@wsx-pct.nhs.uk 01243 770794 or 07899 956254