1. Neurological services - developing a way forward Rob Morrison Chair of Engaging Communities Staffordshire and Chair of Healthwatch Staffordshire

2. Where are we today? 12.5 million patients in UK have a significant neurological disorder More than 4.8 million are permanently disabled by their condition 700,000 neurological admissions per year Neurological conditions account for:- 17% of all GP consultations on average 10% of all A&E visits 19% of all hospital admissions 33% of people living in residential care £4 billion of the NHS budget

3. Neurological Alliance Findings – National Study – Invisible Patient 2015 31% of respondents had to see their GP 5 or more times before being referred to a specialist 39% of respondents had to wait a year from first noticing their symptoms to seeing a specialist 58% of respondents have experienced problems in accessing services 71% of respondents have not been offered a care plan It is proven that waiting for a proper diagnosis can lead to long term conditions being developed which timely diagnosis could have contained Many of the re-admissions to hospital could be avoided with early diagnosis

4. Strategic Issues Key findings from NA Study the Invisible Patient Only 14% of CCGs had made an assessment of Neurological needs Only 20% of CCGs had made contact with NHS England about commissioning Only 38% of CCGs had made attempts to integrate services Association of British Neurologists – Commissioning toolkit shows:- 1 in 55 of population has a long term neuro. Condition ( 20,000 in Staffs % S-o-T?) 25% of Parkinson’s Disease patients have never seen a specialist nurse UK average 1 consultant per 100,000 population Target is 70,000 In USA the figure is 22,000!

5. Common neurological conditions which account for 70% of new referrals Strokes and TIA’s Headaches including migraine Epilepsy Dementia Congenital neurological problems including cerebral palsy Parkinson’s Multiple Sclerosis Polyneuropathies and mononeuropathies Traumatic brain injuries Functional symptoms

6. Why have Healthwatch Staffordshire decided to organise a project group to drive improvement? Working with Staffordshire Neurological Alliance we knew things were happening Progress slow and not consistent across the County and Stoke on Trent Commissioning policies have changed – CCG’s from 1 st April 2015 The health and social care economy is severely challenged Neurology in spite of the numbers of patients hasn’t been high on the agenda The total system isn’t working effectively and there is an appetite for change

7. What are our objectives as a group? Establish the current position on commissioning and delivery of neurological services Establish any changes to commissioning policies and delivery of services Establish what a successful service would look like Establish what is working well in Staffordshire Establish benchmark data and good practise from other parts of the UK and the Strategic Clinical Networks

8. What have we done? Established a group of commissioners, providers, clinicians and most importantly patients We’ve met twice with more meetings planned We’ve established an information sub group to collect accurate statistics for Staffordshire and Stoke-on-Trent

9. Next steps Produce accurate data to establish true position in Staffs and Stoke-on-Trent Establish by comparing with national data if we have any particular issues Produce a business case by the Summer to place neurology as a higher clinical priority with GP’s via the Quality Outcomes Framework process Try to inform the Sustainable and Transformation Planning process However….if services elsewhere haven’t been reviewed, improved and integrated more effectively this may have the unintended outcome of diagnosing more patients but increasing waiting times. Gather patients opinions and views of services via surveys

10. Conclusions This is not an easy issue to solve!! However, our project now has the support of key organisations that want to see a difference and improvements There is a lack of coherent business intelligence to inform decisions (at national level as well) which we want to address We are seeking to work with others to gain support in developing a “joined up” solution to neurological care Patient involvement is crucial