National Neurological Alliance

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

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 )

As always, we want to thank Louise Chance at A Chance for Life for her unstinting contribution to both the Alliance and Headway groups.

We have regular and valuable advice and correspondence from Jozi Brown at Cumbria CVS and strongly recommend 3rd sector groups become members.

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

(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.



If you would like to join us just drop me a line at  

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

With best wishes for a Peaceful Christmas

Glenys Marriott

Chair Cumbria Neurological  Alliance

Image result for peaceful christmas


Appointment of Neurological Alliance Chief Executive – Maternity Cover

Appointment of Neurological Alliance Chief Executive Maternity Cover
We are delighted to have appointed Joe Korner as maternity cover for our Chief Executive Sarah
Vibert.  Joe has worked in the charity sector for over 30 years, including as Director of External
Affairs at the Stroke Association for ten years until 2015.

Joe’s time at the Stroke Association saw the charity win important campaigns such as the creation of a National Stroke Strategy; the creation of acute stroke units across the country; and the FAST (Face, Arm, Speech, Time)
advertisements raising awareness of stroke symptoms.

Joe starts at the Alliance on 15 January, and will be at the AGM and December policy group meeting. We will share contact details shortly.

National Neuro Advisory Group & Clinical Reference Group

14th November 2017

The NA patient group met with Professor Adrian Williams, National Neuro Advisory Group Chair and Clinical Reference Group chair and  Jackie Kemp, lead commissioner for adult neurosciences. There was a tight agenda including:


  • NICE guideline on suspected neurological conditions in primary care
  • Clinical leaders away day feedback and key messages
  • Programme management
  • Condition specific workstreams update
  • Data subgroup
  • Rehabilitation and Stroke National Plan


    • Neurosciences specifications
    • National Service Review
    • Condition specific commissioning policies

More details to follow shortly.

NA – Department of Health and ministerial meetings

From Sarah Vibert National NA

“• Our recent meeting with the Department of Health raised some important points. The Department
representatives stated that the only priority at present is to maintain momentum on the
reconfiguration and integration/transformation agenda. On discussions around STPs, the Department
acknowledged that STPs need better engagement with patients, but feel that they can be rolled out
without any further legislation.

• We have also recently met with Lord O’Shaughnessy. At the meeting we highlighted the importance
of maintaining momentum with the new NNAG leadership model, but ensuring this is properly
resourced to deliver real change for patients. We discussed the lack of commissioner engagement in
neurology and the need for proper patient engagement in the forthcoming national review of
neurosciences, as well as ensuring clarity of commissioning responsibilities through the new
neurology service specification. Finally, we spoke about the lack of data and need to better resource
the system to ensure data can support service improvement.”

The Lobbying Act

From Sarah Vibert National Neuro Alliance

“In August we signed an open letter to the Civil Society minister, Tracey Crouch, on the Lobbying Act,
alongside over 100 other organisations.

Details of the Act can be found here:

Unfortunately, the Government has
rejected the recommendations in the letter and the Lobbying Act will remain unchanged.

Continuing Health Care funding for neurology patients

From Sarah Vibert

“Access to continuing healthcare (CHC) funding is increasingly becoming an issues for neurology
patients. We are therefore taking CHC as the discussion topic for our next policy group meeting on
13th December. Our speakers at the meeting will be Jim Connolly, National Director for CHC at NHS
England, and also Matina Loizou, Chair of the Continuing Healthcare Alliance.”


National Neuro Advisory Group and Neurosciences Clinical Reference Group update

From Sarah Vibert
“The next patient group meeting with Professor Adrian Williams, Chair of NNAG and the Neurosciences
Clinical Reference Group, will take place from 14:00 – 16:00 on 14 November 2017, London

Jacquie Kemp, lead commissioner for specialised neurosciences will also be in attendance at this meeting to discuss the updated neurology service specification. Please email if you are planning to attend.”


Specialised Healthcare Alliance (SHCA) update

A number of members of the SHCA, including the Neurological Alliance, co-signed a letter to urge the three main political party leaders to reverse the recent NICE access to treatment reforms and guarantee that any future reforms will be considered by Parliament before being implemented. The letter was finally issued as an open letter to all the party leaders and published in The Telegraph.

Sarah Vibert, chief executive, Neurological Alliance, said: “Politicians from all sides should pledge to rethink these damaging proposals. It is completely unacceptable that patients with neurological conditions risk being denied access to treatment solely on the basis of cost.”

The Telegraph article can be found here: