National Neurological Alliance

Progressive Supranuclear Palsy

The PSP Charity has moved to;

Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN

 T: 01327 322410




Next meeting 14th February

Here comes the Agenda for the next Neuro Alliance meeting on Thursday 14th February 2019 at 10.30 am – 1 pm

Unit 5/ Hobson Court/Gillan Way/Penrith 40 Business Park, Penrith CA11 9GQ

We are delighted to welcome Ramona Duguid Director of Integration at North Cumbria Integrated Health and Care System who will give us an update and presentation on integration across North Cumbria

This will be followed by Kath Wood Welbeing Regional Contracts Manager  who will give a presentation on Independent Living Service

Other items include Barrow Café Neuro, Changing Places toilets – Update on Carlisle Sands Centre, and another reminder about the National Neurological Alliance – Patient survey.  The survey has been available from 17 October via or

If you haven’t completed the survey already, please do, it is vitally important

Next Meeting Thursday 14th March at  A Chance for Life Penrith


New member of National Alliance Spotlight YODP

The National Alliance is delighted to welcome Spotlight YODP, who were approved as members at the November board meeting. Spotlight YOPD aim to be the go-to organization for people with young onset Parkinsons – providing or enabling access to information and support for those diagnosed at a younger age (under 50).

Strategic link with National Voices forged

The National Neuro Alliance’s Chief Executive Sarah Vibert has been elected as a trustee of National Voices. In this role Sarah will help set the direction of National Voices, and will be well placed to ensure coordination and collaboration between The Neurological Alliance and National Voices on topics of mutual strategic importance.

Congratulations Sarah!

NA Patient experience survey Closes 17th January!!

The patient experience survey will remain open until 17 January. We’re still asking member organisations to promote it across as many communications channels as possible – this is what ensures the best response rates. See more, including comms materials and a survey link, on our webpage on the survey.

The NA team are also in the process of approaching neurology services across England about the roll out of our ‘in clinic’ survey from January.  So far the response from clinicians has been very positive. The NA team attended the Association of British Neurologist’s Services Committee meeting where we took the opportunity to seek their support in engaging clinicians.

National Neurological Alliance website

“New website launched
The new website is up and running. As well as an updated look reflecting our new brand, new features include pages on the National Neuro Advisory Group (which The Alliance co-chairs) and the Neurology Intelligence Collaborative (for which The Alliance provides the secretariat).

A new resource library includes all of our latest documents as well as external publications and data resources.

  • We would be happy to host members’ reports on our resource library – please get in touch.
  • We’re looking for blogs by members. These can be copies of blogs originally published elsewhere – again please get in touch. “

Neurological Alliance AGM – new trustees elected

On 21 November three new trustees were elected to the Board of The Neurological Alliance:

  • David Martin, Chief Executive, MS Trust
  • Pamela McKensie, Director of Neurological Services and Scotland, Sue Ryder
  • Amanda Swain, Vice Chair, UK Aquired Brain Injury Forum (UKABIF)

Three trustees stood down:

  • Ruth Ingledew, Chief Executive, Myaware
  • David White, Chair, Cavernoma Alliance UK
  • Alice Doyle, Chief Executive, The Brain and Spine Foundation.

Notification of NA online patient experience survey launch 17 October

Important update from the Neurological Alliance – we shall be joining in and circulating the survey!

“We’re excited to announce that the Neurological Alliance’s third biennial patient experience survey will be launched on 17 October, and will be open until 17 January. Our patient experience survey is unique in gathering the views of people with neurological conditions across England about their experience of health and care services. As with our previous surveys, we will use the results to advocate for improved care for people with neurological conditions. Below are some details about the survey, what we use if for, and why it’s worth your effort to promote it.

Benefits of actively promoting the survey to your community

  • Deliver a rich source of data on neurology patients‘ experience
  • Influence the future quality of neuro health services and social care
  • Receive a report of your individual condition’s aggregated results

What do I need to do?

Please consider undertaking the following steps to help promote the survey:

  • Reserve space for information about the survey in your outward communications with your community taking place October – January.
  • Identify a good location(s) to place a poster about the survey.
  • Use the forthcoming comms toolkit to support you in your promotion activities.

What are the benefits for my condition community of promoting the survey?

By promoting the survey you will aid the collection of data used to advocate on behalf of all people with neurological conditions. We will also give you the aggregated results specific to your condition community. So the more you promote the survey, the better the understanding of your own condition community’s experiences you will gain. The results from previous patients experience survey have been used in many ways including:

  • Making the case for continued national leadership for neurology in order to drive much needed improvement in services, which resulted in the National Neuro Advisory Group being set up.
  • Presenting to the National Neuro Advisory Group, which result in them deciding to prioritise care planning and communication with patients.  This work is now being fed into work on the long term plan for the NHS.
  • Highlighting the particularly poor experience of people with co-morbid mental health, cognitive or emotional needs.  This informed our 2017 publication Parity of Esteem for People with Neurological Conditions and lead to the Neurological Alliance developing a programme of work on mental health and neurology

 Is the survey the same as before?

This will be the Neurological Alliance’s third biennial Neurology Patient Experience Survey. We previously ran the survey online only, gaining over 7,000 responses in 2016. For 2018/19 we’re running the online survey as usual. But we are additionally using a new clinic-based methodology, to enable us to achieve a more representative sample of people with neurological conditions, and increase our response rate. This will take place early in 2019. The Neurological Alliance is working in partnership with Quality Health to deliver the 2018/19 survey. Quality Health has significant expertise in this field, being the largest provider of patient and staff surveys to the NHS in the UK.”

Katharine McIntosh

Senior Policy and Campaigns Adviser |The Neurological Alliance   Follow us on Twitter: @NeuroAlliance   Join us on facebook 

National Alliance team changes

New alliance team.  Sarah Vibert our national CEO started maternity leave and we welcomed Katharine McIntosh, new Senior Policy and Campaigns Adviser on 2nd January and Joe Korner,  Sarah’s maternity cover on 15th January.

As agreed at the September meeting, we will now have two face to face national meetings each year (in March and September, spit by northern/southern regions), and also four conference calls each year in between face to face meetings.

You can read more about the national Neurological Alliance at

215 Vauxhall Bridge Rd, Kensington, London SW1V 1EJ Phone020 7584 0635

We are the Cumbria Branch and we’re always delighted to have more members.  Drop me an email to



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

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