Dr Conor Maguire Consultant, NHS Lothian Chair, Lothian Parkinson s Forum

Transcription

1 Dr Conor Maguire Consultant, NHS Lothian Chair, Lothian Parkinson s Forum

2 I am a GERIATRICIAN Training: General Medicine Neurological conditions Cognition memory clinics Falls Multi-organ involvement of illness Leadership of multidisciplinary teams

3 Why is Parkinson s important in Scotland? Why the Standards are important What makes an ideal service? How should a service be run? What is missing from the Standards?

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5 Scotland: Population 5,186,500 Prevalence:140 per 100,000 (MND 2.5/MS 203) 7,000 people with IPD Annual incidence of 13 per 100, newly diagnosed cases annually Prevalence & incidence are age related Average age at diagnosis: mid-60 s 2-3% of the population aged > % of the population aged > 85

6 Local GP Practice 6,611 patients 6 GPs

7 Prevalence of Disease Hypertension 1,034 Asthma 369 Heart Disease 306 Kidney Disease 272 Diabetes 220 Parkinson s Disease 23 Each GP will see 1 new diagnosis PD every 2 years

8 PD is a UNIQUE condition Myriad of Motor and Non-Motor features Diagnosis of PD remains predominantly clinical.

9 True interface of Neurology Medicine for Older Adults Allied Health Professionals Psychiatry / Psychology General Practice Support Agencies An Ideal Service needs to play on the strengths of each of these disciplines

10 Diagnostic error is common Error rate of up to 50% (community-based study) 30-40% of cases may remain undiagnosed Diagnosis difficult in the elderly 10% of the institutionalised elderly

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12 A person-centred pathway Early detection / recognition Easy and clear referral pathway

13 Early specialist opinion Early multidisciplinary assessment Involvement of Support Bodies throughout process Easy access at all times to PNS/specialist

14 Continuity of care from diagnosis onwards Neurologists & Geriatricians with a specialist interest would work together Timely review The right person in the right place at the right time Physician / Nurse / AHP SALT / Pain team / Psychiatry / Psychology / Other disciplines (SW)

15 No discrimination based on geographical area

16 There must be a STAKEHOLDER GROUP in each Board Area Specialists MOA/Neuro/Psychiatry PD Nurses Patient Group AHP Board Representation

17 Variable - Pockets of excellence Has tended to be personality-dependent Lack of access to adequate AHP expertise Lack of PD Multidisciplinary teams Not always a seamless journey Many undiagnosed and lost to follow-up

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19 Identifying people with Parkinson s in the community Education of Doctors / Nurses / AHP staff Review of people in care homes Identifying those lost to follow up Access to GP computerised data

20 A clear pathway of care from the time of initial detection Clear to GP Clear to patient How to achieve? Clear referral guidelines Ref Help Guidelines include refer untreated Fixed time for 1 st appointment

21 GP Direct Referral pathway: Age / Comorbidity considered NEUROLOGY M.O.A.

22 Definition of a PD specialist A Neurologist? OR a doctor who has been formally trained in PD and who attends regular education in PD (BGSMDS)? Definition of the expertise of all health care professionals

23 Should the Parkinson s nurse work autonomously, with a consultant, in a team?

24 After diagnosis: The patient, carer and GP should have a clear pathway of future care Follow-up: Minimal: Annual by Consultant In between / ad hoc by PDNS There should be a linked computer system for GP/Hospital

25 Neurologists Difficult diagnostic dilemmas M.O.A. Consultants Complex stages of the illness / Co-morbidities Multidisciplinary team approach General Practitioners

26 GPs need to be educated in what they can manage well! Useful aspects of the disease to assess in primary care: General well-being BP Night time mobility Hallucinosis Pain Sleep issues Sexual dysfunction Drug adverse effects Constipation Urinary symptoms Depression

27 There should be an early assessment after diagnosis by: PDNS to discuss diagnosis Physiotherapy to discuss mobility issues Pharmacist to discuss medications? And OT SALT DIETETICS Etc depending on need

28 There should be ONE CONTACT NUMBER for patients / carers Parkinson s Nurses should have direct access to consultants in area and booking for clinics

29 SECONDARY CARE INITIAL ASSESSMENT NEUROLOGY P.N.S. M.O.A. SPECIALIST A.H.P. REVIEW SHARED CARE PATHWAY WITH PATIENT AND G.P. DENTAL / SPECIALTY REHABILITATION PSYCHOLOGY / PSYCHIATRY / PHYSIOTHERAPY O.T. S.A.L.T. DIETETICS & SOCIAL CARE INVOLVEMENT OF SUPPORT GROUPS

30 There needs to be easy access to Specialist psychology Specialist psychiatry joint clinics? Palliative care

31 ADMISSION TO HOSPITAL: Any admission of PWP should generate an automatic referral to the PNS and patient s specialist Any person should have the right to take their own PD medication Education of staff in management of specific problems should be obligatory Nurses / AHP / Pharmacists / Doctors

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34 Summary

35 1. GPs/Community teams need to be skilled in recognising symptoms and aware of need for immediate referral including those not currently being followed up Every person, irrespective of age/co-morbidities would be entitled to be linked into the pathway of care Do not forget people in Care Homes & lost to follow up

36 2. Each NHS Board area would have a Pathway of Care easily accessible from the community (e.g. GP making appointment)

37 Summary 3. Each NHS Board area would have sufficient specialists and Parkinson s Nurse Specialists to allow patients to be seen rapidly and reviewed in fixed time periods. Being a neurologist or MOA consultant is not enough! Specialists must work together / interact

38 4. There must be sufficient therapists with a skill in the management of PWP in each geographical area specialist multidisciplinary teams (PT/OT/SALT) e.g. Lee Silverman / cueing techniques

39 5. The PWP is given a clear outline of the care that will be provided for the duration of their illness Single point of contact Next appointment at time of present appointment Booklet outlining a care agreement and who to call about what and when

40 6. There is easy access at all times to : NAMED Expertise in Neurosurgery Psychiatry Psychology

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