Month: May 2017

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

Universal Credit concerns

Work and Pension Committee highlights serious concerns with Universal Credit to Minister: The Work and Pensions Committee has written to Damian Green highlighting a number of serious concerns about how Universal Credit is operating in practice, and saying that the practical operation of Universal Credit must be an urgent priority for the Department following the General Election. Read more

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Co-producing technology: harnessing digital solutions for social care

Message from our Founder – Liz Ashall-Payne

Co-producing technology: harnessing digital solutions for social care: The report is based on a recent workshop, which explored how people who use services contribute to technological design and are changing the delivery of social care.

The Cumbria Neurological Alliance is in discussion with Liz Ashall-Payne to see how we can support the work of ORCHA

https://www.orcha.co.uk/

ORCHA is the Organisation for the Review of Care and Health Applications. Their main purpose is to carry out independent and impartial reviews of health and care related apps and to present this information clearly through thewebsite and professional platforms. They use a clinically and academically validated framework to thoroughly assess apps and present the results in an easy to search app database.

Live platforms make it easy to find relevant apps by category or keyword, and the relevant apps reviewed are summarised with two main scores – Value and Risk, as well as identifying key functions of the app.

This scoring and function system makes it easier for you to identify and compare the best apps for your needs, so you can achieve the best outcomes, with a better understanding of possible risks, to support your health and wellbeing needs or goals.

ORCHA powered clinical platforms can provide tailored functions to professionals to help find and recommend apps to their patients to enhance treatment plans.

By working with healthcare, the government, and developers, it is ORCHA’s mission to help deliver improved visibility of better and safer apps.

Watch this space!

Changes to PIP and Motability users

The Government has announced that disabled people who are turned down for the enhanced mobility rate of Personal Independence Payment and lease a vehicle through the Motability scheme will be able to keep their cars for longer. DR UK is concerned that these changes won’t help disabled people who have long waiting times for appeals in their local area. Read more