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

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December meeting at A Chance for Life Penrith

There was an excellent turnout for this important meeting and we were pleased to welcome people with neurological conditions, colleagues from Newcastle Hospitals, the main neuro charities, community therapists and consultant neurologists.
We received a presentation of the proposals for specialist neuro rehabilitation in North Cumbria and unanimously agreed to respond to Stephen Eames CEO at North Cumbria Hospitals Trust and Cumbria Partnership Trust.
We are pleased to see this piece of work being given priority and look forward to being able to co-produce the new strategy.
The response was also shared with Jackie Daniel CEO University of Morecambe Bay Hospitals Foundation Trust and Andrew Bennett CEO Morecambe Bay CCG, as the content is equally important for services in the south of the County.
I was delighted to receive this  message in response from Jackie
Dear Glenys,
Thank you for copying me into this.  I can confirm that we are fully committed to supporting the priorities and plans for specialist neuro-rehabilitation.  It is really good to see the progress you have and continue to make.”
There has been a great deal of development in the last couple of months and we are delighted to have started the Cafe Neuro in Barrow.  This is our new neuro drop in centre supported by our joint neuro charities.  We have had the first 3 sessions and last Thursday reviewed what we had learned.  We have started an excellent open access room with a range of information available – do drop in to the Hindpool Community Centre to see what is available.

Dan Rattigan, new post with NHS England

Dan Rattigan, policy group vice chair for the National Neuro Alliance, has left the MS Society to become Senior Policy Manager – Mandate Partnerships and Accountability at NHS England.

Dan Rattigan

We look forward to working closely with Dan and you can read more about him at https://www.linkedin.com/mynetwork/invite-sent/dan-rattigan-9b995b59/?isSendInvite=true

Disability Rights Handbook out now

New Stroke Strategy for Morecambe Bay

I was delighted to contribute to the launch of the new stroke strategy for Morecambe Bay and I spoke about the role of the 3rd sector in preventing stroke and supporting families and patients after stroke.

The Bay Wide Stroke Prevention programme launched earlier this month at Café Ambio, near Crooklands. The programme has been launched by Bay Health and Care Partners to bring partners together to help to reduce the number of strokes across the Bay by 50%.

This ambitious project follows in the footsteps of good practice developed in West Yorkshire and will focus on five key areas: Prevention, Detection, Protection, Management and Recovery.

The launch outlined the Stroke Prevention Programme and also sought insight from those with expertise in preventing strokes from occurring, managing strokes when they do occur and helping stroke survivors to recover. The 60 experts participated in table discussions to begin the implementation of the programme across the
Bay.
A key focus of the programme will be communicating how we can all reduce the risk of stroke across the Bay . The social media statistics surrounding the launch showed that more than 122,000 Twitter accounts were reached by
tweets from the launch. (You can see my tweets about the event on our links page)

If you would like more information around stroke prevention please visit the website at

http://www.bay-widestrokeprevention.co.uk/page.aspx?ID=26

or get involved on Facebook @Baystrokeprevention and Twitter @bay_stroke

Glenys Marriott presenting 3rd sector role

From Disability UK – UNITE

Free Unite Magazine

 

Disability Rights UK is pleased to announce that we are working in conjunction with UNITE Magazine.

Events 2018

• Encephalitis Conference, 4 December 2017 in London.
• Next steps for NICE: funding, quality and adoption, 11 January 2018 in London.
• Improving access to medicine: pricing, regulation and implementing the Life Sciences Industrial
Strategy, 1 March 2018 in London.
• 21st World Congress on Neurology and Therapeutics, March 2018 in London. The theme will be
Exploring the Recent Innovations and Novel Therapies in Neurology and Neuroscience.
• 7th International Conference on Brain and Neurological Disorders,10 – 12 April 2018 in
Amsterdam.
4th World Congress on Rare Diseases and Orphan Drugs, 11 – 12 June 2018 in Dublin.
• 3rd International Conference on Paediatric Neurology, 20 – 21 September 2018 in Lisbon.

 

2018 Healthcare Science Awards

This month NHS England opened the applications portal for their Healthcare Science Awards.
For the 12th year running, this award celebrates the developments being made by healthcare
scientists in their services across the NHS. To apply or to find out more click here.

https://www.engage.england.nhs.uk/survey/2018-healthcare-science-awards/

The deadline for applications is 22 December 2017.