National Neurological Alliance

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.

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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:

NNAG

  • 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

 CRG

    • 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:
http://www.legislation.gov.uk/ukpga/2014/4/contents/enacted

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 Fiona.tate@neural.org.uk 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:

http://www.telegraph.co.uk/news/2017/05/14/political-parties-urged-commit-reversing-nhs-drug-rationing/

 

Going the Distance Report update

Going the Distance

The up-dated version of the Neurological Alliance ‘Going the Distance report’, first published in 2014, will be launched at the Community Neurology 2017 event in June. The NA has teamed up with Sue Ryder for the 2017 version of this report, which will include their analysis of the extent to which neurology is prioritised in the 44 STPs.

Copies of the new Going the Distance reported will be shared with all members next month.