Cumbria Neuro meetings

NEW Neuro Drop in Centre Barrow – next meeting

Watch the new page – we are planning a new weekly drop in centre at Hindpool Community Centre Barrow in Furness

Thanks to Local GP Dr Farhan Amin and Lesley Graham Public Health Locality Manager with Cumbria County Council we are being supported to start a new regular drop in session.

Our partners include Headway South Cumbria, Parkinson’s UK, The MS Society, Cumbria Partnership Trust’s ABI team, Epilepsy UK and Louise Chance at A Chance for Life.  We hope to include more neurological charities as we develop, but anyone living with a neurological condition will be welcome

 

Initial planning meeting with Shirley Mickalak, Lesley Graham, Glenys Marriott, Christine Wilson, Jan Waddington, Chris Wilson and Vivienne Rogerson

If you are interested in helping or just want to know more, join us at 10.30 am Thursday 12th October at

24 Nelson Street Barrow in Furness LA14 1NF

Please contact me if you would like to be involved:

 

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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.

 

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

Join us tomorrow – Thursday 11th May Penrith

10.30 am A Chance for Life Penrith 5 Hobson Court Gillan Way Penrith Business Park Cumbria CA11 9GQ
Remember that parking is difficult – so try across the main dual carriageway at the North Lakes Hotel Ullswater Rd, Penrith CA11 8QT
We have a really full agenda tomorrow starting with an informal talk from Theresa Westhead  about Huntingdon’s Disease.  Plenty of opportunity to ask questions.
 
This is followed by Faye Spedding, Neuro rehab case manager North of England Specialised Commissioning Team NHS England
There will also be key colleagues from Headway UK present to meet with local representatives at the end of the meeting.
Do remember to register for all our updates on our website at
 Please pass the invite to others you feel will be interested.

Notice of May meeting – AGM

Our May meeting will include our AGM and we hope as many members as possible will be able to attend. We run entirely on the good will of people with an interest in neurological conditions and meet 8-10 times a year, mostly open meetings with speakers.

The AGM meeting will include 

  • Confirmation of minutes of the AGM 2016
  • Chair’s annual report
  • Accounts 2016-2017
  • Formation of committee for 2017-18

If you are interested in joining the committee please either email cumbrianeurologicalalliance@gmail.com or complete the attached form

 

 

 

Rehabilitation – let us know if you have problems accessing services

Why is rehabilitation important?

The aim of rehabilitation is to help you regain your former skills where possible, and compensate for skills lost, to the best of your ability. When you are living with a neurological condition, undergoing rehabilitation can be a key factor in determining your quality of life. It is therefore important that you have access to appropriate equipment and to appropriate health and social care professionals, as necessary. Such professionals may include speech and language therapists, occupational therapists, physiotherapists, neuropsychologists, clinical psychologists, rehabilitation physicians, orthotists and care managers.

You may benefit from rehabilitation in hospital or at home and at any stage of your condition. However where an acute or emergency episode has occurred, as for example with head injury, the greatest progress is often achieved over the following two years. In such cases a speedy referral to rehabilitation services is important. Rehabilitation usually ceases when it no longer produces sufficiently marked changes. However,sometimes rehabilitation is needed to prevent things getting worse. Although it may not achieve measurable improvement, it is still worth while.

You should be reassessed regularly or as necessary, especially if your condition is changing. You may have to ask and keep asking either your GP or specialist for this to happen. This reassessment can be carried out by a rehabilitation physician, by your hospital or community rehabilitation team. The way this service is organised, and the procedures for referrals and assessments, varies throughout the country.

In Cumbria we have been involved in two reviews of neurological rehabilitation services.  The first has been county wide, including the CCG and the Cumbria Partnership Trust.  The second is a review of specialist rehabilitation across Lancashire and South Cumbria.

Please let us know if you have experienced problems accessing rehabilitation.

Changing places, changing lives

At our February 2017 meeting members agreed to make the lack of changing places with a hoist and bench in Cumbria a priority.

Sometimes you just need to change one thing to open up a world of possibility…

Over a 1/4 million people need Changing Places toilets to enable them to get out and about and enjoy the day-to-day activities many of us take for granted.

The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.

To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.

We know there is provision at the Kendal Leisure Centre and in Carlisle at the YMCA.  Other private provision is at the Calvert Trust, Keswick, the Firefighter’s Charity in Penrith and one is planned for Copeland in 2017.

 

Read more and help us get better provision in Cumbria http://www.changing-places.org/

Tell us if you know of anywhere else providing this provision in the County.