Introduction to Staffordshire Neurological Advocacy Project Steve Searle

STAFFORDSHIRE NEUROLOGICAL ALLIANCE LTD is a company limited by guarantee No: and a registered charity No: Our Mission is To work for the relief of those persons who are receiving or have received treatment for a neurological condition and their families and carers And To advance the education of the public in all matters concerning neurological conditions

1. Working group developing quality neurology audit tool (2008) 2.Task and Finish working party SSPCT undertaking audit using this tool (2009) 3.South Staffs Neurological Alliance formed (2011) 4.Encouraged by Cabinet Member Matthew Ellis, extended remit to cover all Staffs and Stoke on Trent, forming the Staffordshire Neurological Alliance (SNA) 5.Held meeting on quality neurology during which patient stories were at the forefront Chronology of SNA development

A view from the edge My husband has had Parkinson's Disease for just over 10 years and he also has Parkinson's dementia. I have been trying for some years to get better care and have decided that the best thing to do is move from Staffordshire. Kinver is so isolated from Staffordshire services. I have been offered 3 days a week day care at Wombourne for which we pay, whilst in Dudley there is currently 7 days a week care which is free. He sees a consultant in a Dudley hospital and there is a Parkinsons Nurse in Dudley but there are far more patients than she can help. My husband has been in hospital for the past 6 weeks after a severe dementia episode. It has been a real struggle to get assessments for the care he needs as his condition is so variable and although I have obtained 2 weeks enablement I felt it was very grudgingly given. The options seem to be that then he comes home and I just struggle on or he goes into a care home

Power of Patient stories A commissioning manager from Seisdon CCG attended and asked for details of issues in Kinver Rehabilitation Service tender produced and Service set up at New Cross Hospital Wolverhampton

UPSTREAM Prompt diagnosis Adequate neurologist cover  Use of GPSIs Early referral to specialised physio /OT/SLT Availability of Specialist Nurses Parkinson’s MS Epilepsy All services as near to patient as possible

DOWNSTREAM Better social and economic functioning Reduced falls Reduced demand for out of hours GP services Reduced A&E attendances Reduced unplanned hospital admissions Improved quality of life for those living with conditions and those caring for them

KEY SERVICE DEVELOPMENT PRIORITIES (as at 2010) There has been a need demonstrated for a neurological network across SSPCT to be established which could address some of the communication difficulties mentioned above Greater consistency required with continuing care assessment and provision across the trust, and relevance to specific conditions Better information directories required to improve knowledge for service users and clinical staff

National Audit Office: Services for people with Neurological Conditions December 2011 POOR PERFORMANCE IN IMPLEMENTING National Service Framework (nowhere fully met) LACK OF PERSONAL CARE PLANS MAJOR GEOGRAPHICAL VARIATION IN ACCESS TO AND QUALITY OF SERVICES EMERBENCY HOSPITAL ADMISSIONS OFTEN NOT UNDER NEUROLOGISTS

THE INVISIBLE PATIENT Neurological Alliance January % had to see GP 5 times or more before referral 40% waited 12 months plus from initial symptoms to referral Only 26% of CCGs assessed prevalence and usage Only a third of CCGs included patients in decision making Only a third actively seek feedback about services they commission

CURRENT SNA OBJECTIVES Seek provision integrated from diagnosis to death Remove the waste inherent in fragmented commissioning help commissioners save and reallocate funds to prevention/ care in the community

Why This Programme? SWOT analysis: Need to increase capacity Need to plan succession

Initial Training TUESDAY 12 TH MAY ROSE THEATRE RUGELEY