Neurology Update: Managing Symptoms in the Community

WHY ? Good evening, thankyou . I was a GP for 20 years in Freshwater, stopped practising 4 years ago because my husband has a long term neurological illness. Most of those I have met have had major struggles to find help on the Island and across Hampshire. Personally the only person my husbands neurologist put me in touch with locally was a part time Charity paid Care Advisor covering 3 large counties- she made a massive difference, yet was outside the NHS. It makes a huge difference when a trusted professional recommends a source of support, if not a formal referral. Individuals are terrified of the future , of meeting people that means accepting that future, even a difficult death.(eg hospice or psychiatric care) When they decline a referral, or peer support it also blocks their family from knowing that professional experience and support. Even within the NHS there are massive gaps. Access within NHS depends on having the right illness and living in the right place

Prevalence on Isle of Wight of LTNC 2011 (CCG via Vision) 2015 ( Public Health via Eclipse) Epilepsy 960 (QOF) 2003 (coding ?) Parkinson’s 421 435 MS 309 358 Brain injury 80 (est via rehab) 427 (coding ?) Spina bifida - 177 Hydrocephalus 128 MND 20 44 Myasthenia 37 52 HD 13 32 Musc dystrophy 4 48 Ataxia <5 PSP 15 CMT 30 There are no national or regional databases of neurological diagnoses Over 350 conditions, some common , some rare ,most complex and long term Comments on some of the most common in brackets are my own reflection. I attended the IOW End of Life Strategy last Monday- a partnership of CCG , IOW Trust , EMH and other partners . Leaders and Chief executives were present. Integration and partnership working was discuss, in line with the principles of My Life a Full Life.. DOCUMENT BUT access depends on “ having the right condition” Most neurological conditions are not the result of lifestyle choices which take up huge resources.

Practical help exists outside the NHS WHAT? Island Neurological Network is mainly virtual ( no regular resources) HNA neurology booklet on-line www.hantsneural.org detailed and up to date How? Existing peer support groups Learn from each other by sharing relevant local information in various formats with individuals, families and professionals. Drop in support groups around localities -2016 Volunteers in out patients? Practical help exists outside the NHS Island Neurological Network is an umbrella organisation of 10 separate peer support groups. Most are Island branches of national charities. We are a sub group of Hampshire Neurological Alliance . Sadly many professionals are unaware also of who can be that experienced peer support, even Consultants and GPs and social workers who have worked locally for years are unaware. ( Myself and Dawn Cousins ) How do you know what you don’t know ? We would like your views on the possibility of volunteers in outpatients being available to support signposting to patients. They could be present on the day of diagnosis, or available a few weeks later as questions arise and there is a long wait for follow up. There is no intention to give medical advice – merely where to find support , in a similar way to the Blind Society in outpatients or Macmillan at the John Cheverton Centre. As we are a charity- we have a donation pot at the door. Contributions towards cost of supper means more resources for those affected. We look forward to learning from colleagues across primary secondary and tertiary care- that is the reality of neurological services.