National Neuro Alliance Manifesto

23rd May 2017

Neurological Alliance Manifesto published

We have published our Manifesto 2017: a call to action for neurology. We set out five calls for improving neurology services, based on what thousands of patients with neurological conditions have told us about their current experiences of navigating through the health service.

We are asking all parliamentary candidates to help us address these key issues for the millions of neurology patients in England:
1. Access to specialist care must be:
• a reality for all people with neurological conditions, from diagnosis to the end of life
• available across all care settings – in the home, in the community and in hospital

2. Primary care professionals must:
• provide a timely referral or diagnosis for people with neurological conditions
• sign-post patients to condition-specific information where appropriate
• be aware of key signs and symptoms indicating a neurological condition
• be supported with adequate medical school and on-the-job training regarding neurological conditions

3. Research into new and better treatments for neurological conditions must:
• receive ring-fenced UK Government investment and leadership to match the burden and full spectrum of neurological conditions
• be encouraged as part of an environment that promotes clinical trials in the UK

4. Decisions around treatments for people with rare and complex condition must:
• be taken in consultation with patients, their carers and voluntary sector groups
• not result in restrictions or rationing based on cost alone
• be considered by Parliament before being implemented – any decisions to restrict the availability of NICE-approved treatments should be taken by democratically-elected politicians

5. Mental health needs of those with neurological conditions must:
• be given particular consideration in the design and delivery of services
• be prioritised as part of the focus on parity of esteem for people with long term conditions

Read and download the manifesto here and please share widely.

 

Would you like to learn more about Digital Health?

The University of Cumbria is running two modules in Digital Health beginning September 2017.

The first is DIGITAL HEALTH: USE OF TECHNOLOGY IN HEALTH AND SOCIAL CARE, this provides an introduction to using technology in health and social care in a variety of settings.

 

The second is DIGITAL HEALTH: WORK-BASED PROJECT in which you will be supported and mentored to implement a work based project.

For more information on these courses, please click here, or if you are interested and would like to discuss the course further, then please get in touch with me. Please also forward this email to others who may be interested.

elaine.bidmead@cumbria.ac.uk

Why horses are my therapy

This Get Yourself Active Personal Experience Blog comes from Britta Francis who, despite having complex medical problems, has ridden a horse for most of her life. She says “I now ride for about half an hour, once a fortnight, which gives me a huge sense of achievement and enjoyment. Importantly, it also gives me the opportunity to socialise with like-minded people, and make new friends.” Read blog

DWP has 80% targets for refusing benefit reconsiderations as a Key Performance indicator

Ken Butler, DR UK’s Welfare Benefit Adviser said “That the DWP has an actual target for refusing benefit decision reconsideration requests is bad enough, but that it has set and exceeded a figure of 80% is appalling.” [Note there are no actual KPI targets for PIP, as yet, but refusals of PIP reconsiderations are high]. Read more

Eleven new disability research projects receive £1 million as DRILL calls for new bid

Eleven projects across the UK are the latest to receive between £39,000 and £150,000 each of previously awarded funding to explore aspects of how disabled people can live as full citizens in our society.

The projects, which include exploring employment opportunities, housing and social care services for disabled people, are the latest to be funded by DRILL (Disability Research on Independent Living and Learning) programme, a £5 million research scheme led by disabled people and funded by Big Lottery Fund.

The announcement coincides with DRILL’s call for new bids for funding, which is announced this week – it is looking to allocate another £1 million.

All DRILL projects are led by disabled people or people with long term health conditions, working in co-production with academics and policy makers.

The latest grants were approved by the DRILL Central Research Committee, which is chaired by Professor Tom Shakespeare. He said:

“Once again, a terrific set of applications to the DRILL scheme. The Research Committee are delighted to be able to support work about  adapted housing, autism, young disabled people, disabled parents and other important issues, from all parts of the United Kingdom. It’s particularly rewarding to see the strong new relationships which are emerging between disabled people’s organisations and university researchers.”

Sadly none in Cumbria but do check out the successful projects:

Find out more

Allerdale Branch of the MS Society Conference 14th May 2017

I was delighted to be asked to chair this education conference run by the Allerdale Branch of the MS Society.  There was an excellent turnout of over 70 members and the venue was the delightful Hundith Hill Hotel. http://hundith.com/

The programme included an excellent talk about the Brain Bank by Dr George Gveric from Imperial College.

You can read more at https://www.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bank

His presentation was followed by Dr David Footitt Consultant Neurologist from the Cumbria Partnership NHS Foundation Trust.  David was well known to the patients in the room and has been at the forefront of developing services for MS in Cumbria.

 

 

 

 

 

David described the choice of drugs currently available for people with MS and there were lots of questions afterwards.

Yvonne Booth from 10 in 10 an amazing fundraiser showed an inpirational video about her fundraising and her husband Duncan.

http://www.10in10.org.uk/

Do think about registering with 10 in 10 to raise funds for MS

Julia Walker spoke next about her work with Lake District Mobility.  Her project offers amazing access in the National Park to people with disabilities, and we are going to support her and work jointly on developing the range of Changing Places available.

http://www.changing-places.org/

https://www.facebook.com/lakedistrictmobility/

 Julia Walker

We finished the day with another inspiring talk about the Calvert Trust Kielder by Karen Diamond.

http://www.calvert-trust.org.uk/kielder/kielder

 

Contact details for Cumbria MS groups

We had a break for afternoon tea which was most delicious and time for lots of networking.

Many thanks to Hilary Windsor and all the team for inviting me, and we look forward to seeing you at our Cumbria Alliance meetings.

 

Public Health Alliance – 3rd Sector Representative needed – Cumbria

Received via Cumbria CVS

Please find attached details of the current vacancy for a third sector representative to sit on Cumbria’s Public Health Alliance.

The representative will join Sheila Gregory (Carlisle Mencap and Chair of the Public Health Alliance) in representing the third sector in Cumbria, through the Cumbria Third Sector Network and its various specialist networks.

–          Relevant Terms of Reference, person spec and role description

–          Application form

If you are interested, please complete the application form and email to jozib@cumbriacvs.org.uk by Friday 9 June 2017.

If more than one suitable application is received, the Cumbria Third Sector Network members (through specialist networks) will be asked to elect a representative.

PHA TSN App May 2017 (2)

Role Information PHA Third Sector Rep 2017

Theresa Westhead Huntington’s Disease

We were delighted to have Theresa come to speak to the Cumbria NA last week.  We had a large turnout of members at A Chance for Life in Penrith, and a lively discussion with Theresa afterwards.

Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease affects both men and women.

She is keen to make contact with people interested in the disease and can be contacted at  01942 864645 theresa.westhead@hda.org.uk  She covers Cumbria, Lancashire, Bolton & Wigan

You can see more at https://www.hda.org.uk/hd/what-is-hd