Meeting: IPG Date: 6 th March 2013 Item: 20/13 (ii) NORTH OF SCOTLAND PLANNING GROUP Project Initiation Document Including Criteria for a Regional Approach Clinical Facilitator - Neuromuscular Author: Emma Condon Date: 21/02/13 Version: Version 3.0 1
Contents 1. Document Control...3 2. Background...4 3. Key Vision / Aims and Objectives...4 4. Criteria to Determine the Appropriateness of a regional Approach...5 5. Project Scope (and any exclusions)...7 6. Expected Outcomes...7 7. Roles and responsibilities...7 8. Outline Project Plan...8 9. Project Budget...8 10. Key Stakeholders and Types of Communication...8 11. Risk Register...8 12. Equality & Diversity Impact Assessment...9 13. Guidelines for Completion of Project Initiation DocumentError! Bookmark not defined. 14. Glossary... Error! Bookmark not defined. 2
Please refer to Section 13 Guidelines for Completion of the Project Initiation Document and Glossary, Section 14. 1. Document Control Key Personnel Title: Author: Approver: Owner: Clinical Facilitator - Neuromuscular Emma Condon Clinical Facilitator = Neuromuscular Ken Mitchell Programme Manager Peter Gent Interim Director North of Scotland Planning Group Version History Version Date Summary of changes Changes marked v1.0 28/01/13 N/A N/A V2.0 11/02/13 V3.0 21/02/13 Filename and Path Distribution - TBC Name Division
2. Background The Cross Party Group on Muscular Dystrophy undertook a review of the service provision in health and social care for neuromuscular service users in Scotland and commissioned the Mackie Report. Around the same time, the Scottish Muscle Network also commissioned a review on neuromuscular services in Scotland: Review of current health services for neuromuscular service users in Scotland (Craigforth Report, 2010) commissioned by the Scottish Muscle Network. Inquiry into access to specialist neuromuscular care and social care in Scotland (Mackie Report, 2010) commissioned by the Muscular Dystrophy Cross Party Group (CPG) - http://www.muscular-dystrophy.org/assets/0001/9335/mackie_report.pdf A commitment was made to the Cross-Party Group that the Mackie Report recommendation, to increase the capacity of Neuromuscular Care Advisors (NCAs) and embed them as regional NHS posts, would be implemented. Within Scotland, there were two NCAs, funded on a part-time basis by the Muscular Dystrophy Campaign (0.8 wte in West of Scotland and 0.5 wte to cover the South East and North of Scotland). The Scottish Government agreed to provide funding to support a 2 year project of enhanced NCA provision whereby each of the three regions within NHSScotland would have a single whole time equivalent NCA resource. Within the project an evaluation would be conducted to assess to what extent that level of resource and its remit could support neuromuscular patients and their families across Scotland in a range of key areas set out by SGHSC. Funding was made available from April 2012 31 March 2014. 3. Key Vision / Aims and Objectives The vision / aim of the Neuromuscular service may be ; To support, enable and promote safe, efficient, effective, timely and person centred care for people / families / carers and the workforce in relation to Neuromuscular conditions for the North of Scotland. Objectives: 1. To establish a Neuromuscular Steering Group. 2. To be a named point of contact for specialised neuromuscular advice, information and support to patients/ families / carers and the workforce. 3. Scope current and agree and develop future neuromuscular pathways, standards and clinics from birth, paediatrics, transition, adult to end of life. 4. Create neuromuscular educational training to assess needs and delivery of training to the workforce needs. 5. Support paediatric and adult Neuromuscular clinics across the North of Scotland. 6. Develop and build on innovative models of neuromuscular service care e.g. telecommunication
7. Develop data recording systems to support audit. 8. Develop a business case to sustain a Neuromuscular Regional Project Manager Role SUCCESS CRITERIA Development and implementation of Logic Model evaluation framework Contribution to NSD evaluation framework 4. Criteria to Determine the Appropriateness of a regional Approach NoSPG Criteria Questions to determine the appropriateness of a Regional Approach Can this service be/continue to be provided within a Board area? Can local Boards support any changes necessary to support the service? To what extent will a regional approach sustain continued delivery in the North? Why is a regional approach geographically relevant? (i.e. access, costs, use?) Should this be a national service? Will any Board(s) in the NoS be differentially advantaged / disadvantaged by this service? Are there any other ways that needs/outcomes might be addressed other than a regional service? No Yes Full extent EAST/WEST in post No No Previous option paper (prior to post being filled) Critical Mass What critical mass (minimum number of patients to meet sustainability and quality/clinical requirements) is required to support this service? TBC Could this service be provided locally by means of a local networked approach? Is this service a specialised or categorised as a tertiary service? Is there capacity potential within the region, which will support delivery for the whole region? No Specialised Yes
Is there evidence that the service is clinically effective? Yes - TBC Patient Impact What is the expected health gain to either individual patients or the population? Increased / Quality of Life What will the health impact of not providing this service locally? Disadvantaged / decreased equality How will a regional approach contribute to The Quality Strategy outcomes? Person centred, effective, efficient, safe, equitable, timely How will a regional approach minimise risk? A/A Will the risks be increased or decreased by a regional approach? If increased, how could these be managed? Decreased Workforce Is the workforce available to deliver the solution to the issue? Is there a different and more effective way of using the clinical workforce? What would be the education and training needs? What clinical leadership is required? What disciplines need to be involved? Yes - partial Yes Yes needs assessment At all levels All Could roles be adopted by other locally based staff? Yes - Vision Are there accreditation issues?? Resources (Finance, equipment or facilities) What resources and investment are required to set up and sustain the service? How will a regional approach provide best value/cost effectiveness? Are there areas for disinvestment? What savings, substitutions and efficiencies will be put in place? KM note? What are the potential funding sources??
5. Project Scope (and any exclusions) The scope of this review is focussed on (particular services or Health Boards). This will include: Includes NoSPG Highland, Grampian, Tayside, Orkney, Shetland and the Western Isles Includes clients with a Neuromuscular condition See Appendix 3 Includes paediatrics and adults Excludes west and east Regional Planning Groups 6. Expected Outcomes This is described within the logic model framework attached at appendix 1 7. Roles and responsibilities Project Sponsor Mr P Gent Interim Director North of Scotland Planning Group Project Lead Mr Ken Mitchell Programme Manager Acute & Workforce Project Manager Mrs Emma Condon Clinical Facilitator Neuromuscular Steering Group Ken Mitchell Emma Condon - Deborah Wright - Ann O Hara Katherine Sutton Helen Gregory Gillian Hall Chair Clinical Facilitator/Project Manager Local Authority Representative NeScan representative AHP representative Primary Care representative Adult/Secondary Care Representative Work Team Ken Mitchell Emma Condon - Marie Gardiner - Chair Clinical Facilitator/Project Manager Clinical Facilitator Neonatal
8. Outline Project Plan Summary of major milestones and/or attachment of Gantt chart at Appendix 2 9. Project Budget Scottish Government have provided 2 year pilot funding to support the development of the role 10. Key Stakeholders and Types of Communication (Under Development) Requires to be developed Key Stakeholders Role/ Title Type Of Communication 11. Risk Register Requires to be devleoped Function/Activity: Date of risk review: Compiled by: Reviewed by: Date: Date: Reference The Risk Owner The Risk What can happen and why? (event and reasons) What can happen? (consequences) Identifying existing control Effectiveness and implementation of existing controls Analysis Likelihood Consequences Level of risk Response And Action Review Date
12. Equality & Diversity Impact Assessment Required to be completed
Appendix 1 Neuromuscular (NM) Regional Project Manager - Logic Model Evidence base Needs assessment Inputs (resources) Outputs (activities) Outcomes (short, intermediate and long term) Neuromuscular Regional Project Manager Programme Manager Administration Support NoSPG. IT, e- health, facilities, equipment 1. To establish a Neuromuscular Steering Group. 2. To be a named point of contact for specialised neuromuscular advice, information and support to patients/ families / carers and the workforce. Efficient integrated planning and communication of NM services Maximised quality of person s experience, community awareness, well being and independence Improved, patient, family, carer, workforce experience and delivery of NM services Established NM steering group Improved health and well-being NESCANN members 3. Scope current and agree and develop future neuromuscular pathways. standards and clinics from birth, paediatrics, transition, adult to end of life. Develop the role within adult NM services Improved NM Condition Management Equitable Neuromuscular client group 4. Create neuromuscular educational training to assess needs and delivery of training to the workforce needs. Agreed pathways and referral routes Timely Published research, standards, guidelines Workforce Funding for Neuromuscular Project Manager and set up costs Integration to NoSPG, HEAT, Board outcomes and targets 5. Support paediatric and adult Neuromuscular clinics across the North of Scotland. 6. Develop and build on innovative models of neuromuscular service care e.g. telecommunication 7. Develop data recording systems to support audit. 8. Develop a business case to sustain a Neuromuscular Regional Project Manager Role Improved equity of access to services Engagement of patients, families, carers and workforce in NM planning Increased workforce awareness of NM regional project manager role and build on knowledge and skills Augmentation of NM databases Reduction in travel times and cost Improving and implementing NM standards of care / research Improved NM outcome measures Sustainable models Patients, families, carers and workforce are empowered in enabling NM self management Improved access and co-ordination of NM services Person centred Efficient Effective
Appendix 2 Appendix 3 - List of the commonest neuromuscular disorders Safe Muscular dystrophies Congenital muscular dystrophy Congenital muscular dystrophy with central nervous system involvement (Fukuyama muscular dystrophy) Duchenne muscular dystrophy (DMD) Becker muscular dystrophy (BMD) Emery-Dreifuss (scapuloperoneal muscular dystrophy) Facioscapulohumeral muscular dystrophy Autosomal recessive childhood dystrophy resembling DMD/BMD Ocular muscular dystrophy Oculopharyngeal muscular dystrophy Limb-girdle muscular dystrophy Myotonic disorders Myotonic dystrophy (Dystrophia myotonica, Steinhart s disease) Congenital myotonic dystrophy Myotonia congenita (dominant type Thomsen, recessive type Becker) Paramyotonia congenita Chondrodystrophic myotonia (Schwartz-Jampel) Pseudomyotonia Neuromyotonia (continuous muscle fibre activity Isaacs) Congenital Myopathy Central core disease Mini core disease Multi core disease Nemaline myopathy Myotubular (centronuclear) myopathy Fibre-type disproportion
Non-specific myopathy Mitochondrial myopathies Defects of mitochondrial substrate utillisation Defects of the respiratory chain Defects of energy conservation and transduction Lipid storage myopathies (metabolic disorders) Carnitine deficiency Carnitine palmityl transferase deficiency Myoadenylate deaminase deficiency (Inherited) metabolic disorders Glycogen storage disease of muscle Type I (von Gierke s disease) Type II (Pompe s disease acid maltase deficiency) Type III (Cori Forbes debrancher enzyme deficiency) Type IV (Anderson brancher enzyme deficiency) Type V (McArdle phosporylase deficiency) Type VI (Tarui phosphofructokinase deficiency) Familial periodic paralysis Hypokalaemic Hyperkalaemic Normokalaemic Myotonic period paralysis Inflammatory myopathies Infective myositis Autoimmune myositides Dermatomyositis Junevile dermatomyositis Polymyositis
Polymyositis in association with collagen or connective tissue disease Inclusion body myositis (IBM) Eosinophilic myositis Granulomatous myositis Myositis in sarcoidosis Polymyalgia rheumatica Spinal muscular atrophies Severe SMA (Werdnig Hoffman disease type I) Intermediate SMA (Type II) Mild SMA (Kugelberg Welander disease type III) Adult spinal muscular atrophy X-linked bulbospinal neuropathy Hereditary and idiopathic peripheral neuropathy Hereditary motor and sensory neuropathy (HMSN) Specifically: Type 1a (also known as Charcot-Marie-Tooth (CMT) or peroneal muscular atrophy) Type 1b (also known as Charcot-Marie-Tooth (CMT) or peroneal muscular atrophy) Type II (also known as Charcot-Marie-Tooth (CMT) or peroneal muscular atrophy) Type III (Dejerine Sottas disease) Type IV (Refsum s disease) Type Ix (x-linked) Inflammatory and autoimmune neuropathies Acute post infective polyneuropathy (Guillain Barre syndrome) Chronic inflammatory demyelinating peripheral neuropathy (CIDP) Serum neuropathy Disorders of the neuromuscular junction Myasthenia gravis Myositis Ossificans Progressiva (MOP)