1. Parkinson’s and Other Movement Disorders – MOVE-hIT 12.6.15

2. MOVE-hIT: Improving Quality of life in Parkinson’s MOVE-hIT Executive Board Commissioners supported by Neurological Commissioning Support Movement Disorders Education Movement Disorders Research BNSSG Core Service Delivery Regional Advanced Treatment Services Patient & Public Involvement Industry Involvement Third Sector Involvement

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7. Some key points Good and notable practice: –Dedicated and experienced staff across the statutory services & in acute settings –Examples of good and notable practice However: –There is a lack of strategic planning, coordination and absence of data utilised for service and population planning. –Services often work in isolation and are not ‘joined up’ –There are long waiting lists for follow up –Integration is not apparent except in a few area –Monitoring of patients currently variable depending on location the result of which is emergency hospital admissions –GP’s require more education to know when to refer and who they can manage

8. Headlines Not one patient seen in the review had a care plan Integrated assessment are rare and there are a lack of integrated care pathways Problems with record sharing between health & others (particularly social services & mental health). Confusion from patients around where to get information particularly following diagnosis – much of the information is given by Parkinson’s UK but patients felt much of the infromation has negative connotations High value placed on a single number for contact

9. Headlines Services work well for those that are in the service but not in all locations Weston S-M is a cause for concern More information is needed at diagnosis with a contact number “What do we do after diagnosis”? Review and follow up is diminishing ‘its easier to care for people already in the system’ Referral criteria needed for GP’s so they know who and when to refer More equitable provision of specialist nurses needed to cover the community and care of the elderly patients

11. Headlines Staff say they can undertake specialist rehabilitation work, but the acute ward environment facilities are insufficient for doing this effectively Rehabilitation is not fully commissioned and often depends on where patients live A secondary to primary care discharge pathway and policy to support sustainable rehabilitation would be useful.

12. Headlines Rehabilitation services need to be developed as a matter of urgency in some areas alongside an integrated care pathway that is agreed by all professionals and services involved in care Proactive management – more proactive management of patients could prevent deterioration keeping patients in a maintenance phase for longer, stopping isolation and decline Better access to self-care programmes and information not all rehabilitation has to be part of health care A key worker system to improve the co-ordination of care

13. Headlines Staff say there are not many avenues for accessing vocational rehabilitation There is some signposting but its not comprehensive and social services more likely to give advice on stopping rather than remaining in work Patients and staff both wish this type of information could be accessed via GP’s

14. Headlines Concerns about the lack of age appropriate day and residential care for younger people Staff have problems getting fully funded continuing care and feel that patients are missing out on social support Stronger links to social services to guarantee integration

15. Headlines Concerns were raised about ensuring there are clear pathways for palliative care, including the triggers for starting palliation, for example by following the Gold Standards Framework for everybody with a neurological condition There are training needs particularly for non-specialist staff and care homes, on managing a person’s end-of-life care needs. Parkinson’s cited as challenging Ensure patients are included on GP end-of-life registers

16. Headlines Professionals felt that carers could not choose the extent of their caring role & the kinds of care they provide. There is an urgent need to provide more explicit information about caring Minimal knowledge of carers being offered a written care plan (of their needs as carers) Respite opportunities should be mapped so they are more explicit particularly thinking about younger carers needs

18. Total bed days for primary or secondary diagnosis of Parkinson’s - 2009/10 to 2012/13 DRAFT - NOT FOR CIRCULATION

19. Top ranked comorbidities April 2009 to March 2013 when Parkinson’s is the secondary diagnosis NHS Bristol CCG, NHS North Somerset CCG and NHS South Gloucestershire CCG ICD-10 CODE Primary diagnosis with a secondary diagnosis of Parkinson’sCount Cost £ [N390]Urinary tract infection, site not specified206503,655 [R54X]Senility156204,530 [R55X]Syncope and collapse107102,755 [J181]Lobar pneumonia, unspecified97137,209 [C509]Malignant neoplasm of breast, unspecified8932,675 [S720]Fracture of neck of femur88560,189 [H251] Senile nuclear cataract8161,463 [J22X]Unspecified acute lower respiratory infection6597,454 [C900]Multiple myeloma6433,238 [J189]Pneumonia, unspecified58100,609 [R074]Chest pain, unspecified5837,539 [J690] Pneumonitis due to food and vomit4589,291 TOTAL1,114£1,960,607 DRAFT - NOT FOR CIRCULATION

20. Headlines There are issues with patients admitted to non- neurological wards with regard to staff understanding of the condition Introduction of an admission alert system was highlighted There is scope for Parkinson’s training to be rolled out across non-neurological settings including to GP’s and care homes

21. Population Risk Profiling Disease progression 21 -100% - Low relative Risk Prevention and Well Being Promotion 6 -20% - Moderate Relative Risk Supported Self Care 0.5 -5% High Relative Risk Disease Management 0 – 0.5% Very High Risk Case Management

22. Priorities from NCS Information – clear navigation for advice and information about services and care. Information needs to be streamlined so that clearer materials are available to both professionals and patients. It is essential that patients are given clear, appropriately timed information both at diagnosis and to support self-management GP referral triage – so that the right people see a neurologist Risk profiling – so that complex patients are identified earlier and proactive case management is introduced Pathways – clear care pathways, roles, and responsibilities, and referral routes are needed for professionals to work efficiently and improve patient pathways Self management – Greater support to promote self-management, independence, and lifestyle should be provided at the earliest stage possible and throughout the continuum of the disease.

23. Parkinson’s Disease How could the service quality improve? Extended weekday/weekend cover to improve access to services Clinics coordinated with neurology and care of the elderly consultants 6 monthly reviews for all patients Outreach –Increase in Community Based Clinics –Education groups Education and awareness courses for GPs, Residential Homes, etc