Cumbria Neuro meetings

Cumbria Neuro Alliance October Meeting

Invites have gone out to our next meeting at A Chance for Life Penrith.  Thursday 11th October at 10.30 am.

We are pleased to welcome Pat Newlove to the meeting to talk about Myaware

Myasthenia means muscle weakness

  • Myasthenia affects all ages and genders. It is treatable and can be brought under good control with medication. In some circumstances, it can be fatal.
  • It affects the muscles that let you move but not the automatic ones like your heart that you don’t have to think about. Your brain tells your muscles to work, but the message doesn’t get through.
  • Myasthenia gravisocular myastheniaand Lambert-Eaton myasthenic syndrome are autoimmune conditions whereas congenital myasthenic syndrome is caused by an inherited genetic fault

https://www.myaware.org/

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New Changing Places Toilet Carlisle

We were delighted to be invited to open the new Changing Places toilet in the offices of Cumbria CVS with Laura Cadman, CEO at Shaddongate Community Centre on Thursday 14 June 2018.

The facility is open Monday – Thursday 9am – 5pm and Friday 9am – 3pm.

We are pleased to be members of Cumbria CVS which offers us support in many ways.  If you are running a charity or Third Sector group it is really worth while joining.  Read more https://cumbriacvs.org.uk/

Changing Places toilets have been one of our Alliance priorities for the last 2 years and we have been working with a wide range of partners across the county to increase the provision.

Unhappily there is NO toilet open to the public anywhere in the National Park, YET!

You can read more www.changing-places.org/

Glenys Marriott, Chair of the Cumbria Neurological Alliance today opened the new Changing Places Toilet in the Cumbria CVS offices in Carlisle. Glenys outlined the work done in Cumbria by the Alliance to improve facilities for those residents and visitors who need special toilet facilities. She congratulated the CVS and Carlisle City Council for providing exceptional facilities and for ensuring that they were available to members of the public.
 Glenys said “Over a quarter of a 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.  This high quality facility is an indication of the respect which Cumbria CVS pays its clients, visitors and residents and we shall be pleased to signpost it to our members. Equity of access to appropriate toilet facilities is a human right and we are delighted at the care taken by the CVS to offer this provision”
Glenys was accompanied by Jane Brown from the CP Society and Maureen Arca, the parent of a daughter who needs such provision.
The Cumbria Neurological Alliance comprises all the major Neurological charities including MNDA, the MS Society, Headway South Cumbria, Headway North Cumbria, Epilepsy UK, Parkinson’s Disease, Myaware, Stroke NW and includes NHS, Independent and social care providers of services.

 

 

 

Next meeting Cumbria Neurological Alliance 14th June

The next meeting of the Cumbria Neurological Alliance will be on Thursday 14th June at 10.30 am until 1 pm at A Chance for Life, Penrith.
Unit 5/Hobson Court/Gillan Way/Penrith 40 Business Pk, Penrith CA11 9GQ
Please park over the road at the hotel as parking is now very tight outside the office.
This meeting is also the AGM so please consider if you would like to stand for the committee and drop me an email if you would like to at cumbrianeurologicalalliance@gmail.com

The Lake District Foundation

We’ve been following the Lake District Foundation on LinkedIn  – check them out at Nurture Lakeland, and I thought you would like to know more about them.

‘The Lake District Foundation works to ensure that the Lake District is a place where its prosperous economy, world class visitor experiences and vibrant communities come together to sustain its spectacular landscape, wildlife and cultural heritage. The Lake District Foundation was established in August 2017. Prior to this, under the name Nurture Lakeland, the organisation had been working for 23 years to increase fundraising from visitors and the tourism industry, and delivered sustainable tourism programmes and messages across Cumbria, gaining national recognition. We support the delivery of the shared aims of the Lake District National Park Partnership through innovative fundraising campaigns locally, nationally and internationally. We encourage partners to work together to ensure a coordinated approach to fundraising and income generation. Our influential and engaged board of trustees include senior leaders from: Cumbria Tourism National Trust Lake District National Park Authority Environment Agency United Utilities Local business and tourism organisations.’

https://www.linkedin.com/company/nurture-lakeland/

We hope that we can work with them to get the first public Changing Places toilet in the Lake District National Park, to enable people with disabilities to visit and enjoy the park with dignity.

 

We are passionate to make this happen and urge you to check out http://www.changing-places.org/

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.

You can download campaigns leaflet for more information.

 

Joni Mitchell MND Community Outreach Practitioner

We’ve had a very hectic 3 months so forgive this batch of updates.

We welcomed Joni Mitchell to the Alliance.  Joni is the new MND Community Outreach Practitioner for North Cumbria.  She is based at the Eden Valley Hospice, Durdar Road, Carlisle, CA2 4SD and can be contacted on Mondays Wednesdays and Fridays.

Mob: 07879634455 Tel: 01228 810801 joni.mitchell@evh.cumbria.nhs.uk 

Image result for MND

 

Thank you as 2017 draws to an end

We are already planning a weighty programme for 2018 but as 2017 draws to a close I want to thank our amazing committee and members who have turned out not just across Cumbria, but across the north of England, Greater Manchester and Cheshire to attend our meetings.  Support and attendance from Regional officers from the main neuro charities has been crucial to our work and I am delighted that they feel it is worth their long journeys to attend our meetings.

Those members who attend with long-term neurological conditions make all our endeavours worth while, and it is for them and the hundreds of others in Cumbria that we work to enhance services.  They keep us grounded and highlight what really matters to them.

We aim also to support our clinical colleagues, who care deeply about the work they do, and bring their expertise to our meetings so we can solve problems together.  We have been pleased to support Dr Jitka Vanderpol with her groundbreaking work on headaches and the addition to our committee this summer of Consultant Neurologist David Footitt has been an added bonus.

Dr David Footitt Consultant Neurologist Cumbria

We have spent 6 long years gathering information, working in partnership and making neurological services our priority.  We now feel on the cusp of something very exciting and believe that the needs of people living with a neuro condition might finally be prioritised and addressed.  Stephen Eames CEO NHS in North Cumbria and CEO Jackie Daniel UHMBT and Andrew Bennett Morecambe Bay CCG and in South Cumbria have received our response on how specialist neurological rehab. should be structured and we are keen to work closely with them to co-produce new strategies http://www.bettercaretogether.co.uk/

Co-production, co-operation and critical friendship are our aims.

The TLAP National Co-production Advisory Group says the following about co-production:

‘Co-production is not just a word, it is not just a concept, it is a meeting of minds coming together to find shared solutions. In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them. When co-production works best, people who use services and carers are valued by organisations as equal partners, can share power and have influence over decisions made’.

(See also https://www.england.nhs.uk/blog/david-mcnally/ )

As always, we want to thank Louise Chance at A Chance for Life for her unstinting contribution to both the Alliance and Headway groups. http://www.achanceforlife.co.uk/

We have regular and valuable advice and correspondence from Jozi Brown at Cumbria CVS and strongly recommend 3rd sector groups become members.  https://cumbriacvs.org.uk/

Our latest venture – Cafe Neuro in Barrow is underway and like all new ventures we are learning as we go, but I do hope that anyone living with a neurological condition will feel able to come and join in. We have appreciated the help we have received from Dr Farhan Amin, Furness GP and Lesley Graham Public Health Manager to get this started.  You can find our programme at https://cumbrianeurologicalalliance.wordpress.com/new-neuro-drop-in-centre-barrow/

(Above) Barrow planning meeting for Cafe Neuro with representatives from Headway, MNDA and MND Care Centre at Lancashire Hospitals Trust, MS Society, Stroke UK, Cumbria University, CPFT Parkinson’s Disease, A Chance for Life, Furness Carers and UHMBT.

The Cumbria Neurological Alliance is pleased to be a branch of the National Neurological Alliance which is the only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition. Together we work with our member organisations to campaign nationally and locally to ensure better services and outcomes for all those with a neurological condition. http://neural.org.uk/

 

 

If you would like to join us just drop me a line at  cumbrianeurologicalalliance@gmail.com  

Our diary dates for 2018 are on this website and we look forward to making great progress in 2018.

https://cumbrianeurologicalalliance.wordpress.com/programme/programme-2018/

With best wishes for a Peaceful Christmas

Glenys Marriott

Chair Cumbria Neurological  Alliance

Image result for peaceful christmas

Next meeting Cumbria Neurological Alliance Thursday 9th November

You are invited to the next meeting of the Alliance on Thursday 9th November 2017 10.30 am – 1 pm

Chance for Life Ltd 5 Hobson Court Gillan Way Penrith Business Park Cumbria CA11 9GQ

(Telephone: 01768 891709 in case of emergency or to book disabled parking)

 

AGENDA

  1. Welcome and introductions.
  2. Apologies
  3. Presentation by Tracey Thompson MND Association
  4. Update on NA business
  • Barrow Drop in Hub
  • Invoices for NA membership
  • Website and Twitter update – discussion re Facebook

5.  Update on review of Specialist Rehab Steering Group Lancashire and South Cumbria

6.  Feedback on ICC groups in Cumbria

7.  Programme for 2018 and diary dates

8   Any other business

 

Barrow neuro drop in sessions update

Barrow planning meeting

Members of the Cumbria Neurological Alliance are developing a neuro drop-in centre for people living with a neurological condition, their families and carers. It will be based in the Hindpool Centre, Barrow in Furness.

Charities and specialist neuro therapists working across South Cumbria came together this month to plan the programme which starts on 2nd November. The first groups will be hosted by Parkinson’s UK, Headway South Cumbria and the MND Association.

Dr David Footitt Consultant Neurologist said “I was delighted to hear that Cumbria Neurological Alliance has been able to secure support to run regular drop-in sessions at the Hindpool Community Centre. Whilst patients and carers affected by some of the commoner neurological conditions benefit from local support groups, too many people feel isolated by their condition and unable to link with others facing similar challenges. There are many common experiences shared between people with Neurological conditions. This initiative provides people with the opportunity to share, support and learn from one another whilst enjoying social interaction and a range of activities. This concentration on a core of well-being, supporting independence and maintaining social contacts is key to improving outcomes for my patients. I trust that we in the NHS will be able to support it to succeed and flourish.”

Dr David Footitt Consultant Neurologist Cumbria

The initiative has been supported by Dr Farhan Amin, GP and member of the Morecambe Bay CCG and Les Graham public health locality manager with Cumbria County Council.

Check out the programme https://cumbrianeurologicalalliance.wordpress.com/new-neuro-drop-in-centre-barrow/barrow-neuro-dropin-centre-programme/

Enquiries to Glenys Marriott Chair Cumbria Neurological Alliance at cumbrianeurologicalalliance@gmail.com Twitter @cumbrianeuro

Colin from the ABI team with Christine and David Wilson from Headway South Cumbria

 

David Schofield

 

The team from BIRT Barrow

More photos to come!

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: