Month: February 2016

Next Meeting – Wednesday 9th March 2016

Do join us on Wednesday 9th March 2016 at Penrith Methodist Church Hall

Tim Evans and Elspeth Desert Cumbria Partnership Trust will update members on the progress made in reviewing neuro services in Cumbria

(10.30 start with presentation at 11 am – 2pm)

This is an important meeting to update us on the progress of the neuro-rehab review for  Cumbria.    If you are unable to attend please send your views to


Pubic Accounts Committee – Services to people with neurological conditions: progress review inquiry

Public Accounts Committee (PAC) neurology services review recommendations were published yesterday 26th February 2016 and are waiting Government response.

Cumbria Neurological Alliance supports fully these recommendations.

View the response at

Progress report is ‘wake up call’ over support for neurological patientsPublic Accounts Committee publishes report on state of support for neurological patients

In summary it is a very positive report for neurology – in that they recognise the ongoing neurology issues, they have made some strong recommendations and they will review neurology services again.

Some key quotes from the report: 

  • “Neurological conditions are not a priority for the Department of Health (the Department) and NHS England, and we are concerned that the progress that has been made may not be sustained.”
  • “Services for neurological conditions are not consistently good enough, and there remains wide variation across the country in access, outcomes and patient experience.”
  • “Diagnosing neurological conditions takes too long, services in hospitals are variable and local health and social care services are often poorly coordinated.”

PAC recommendations:

  • NHS England should retain the role of national clinical director for adult neurology.
  • NHS England should set out by April 2016: how it will use the new commissioning for value data packs to help clinical commissioning groups improve neurological services and reduce the variation in services and outcomes; and how it will then hold clinical commissioning groups to account for their performance in this regard.
  • The Department should report back to us [the PAC] by April 2016 setting out how it plans to link health and social care data, including a clear timetable for when it expects care data to be fully implemented across the NHS.
  • NHS England should set out clearly by April 2016 which neurological services are specialised services to be commissioned by NHS England and which services should be commissioned locally by clinical commissioning groups.
  • The Department should confirm how it is measuring performance against the objective that everyone with a long-term condition should be offered a personalised care plan. NHS England should set out a timetable for meeting the objective and the Department should hold NHS England to account for achieving this timetable.
  • NHS England should report back to us by April 2017 on what it has done to make best use of the available neurologists and reduce the variations in access, including through re-designing services and making more use of other clinical staff, particularly specialist nurses.

The PAC quote the Alliance as using four million people as our neurology figure. This isn’t quite correct as the figure of course is much larger than this but they seem to keep out the headache and migraine numbers from their figures which we disagreed with.

14 Dec 2015 – Services to people with neurological conditions: progress review – oral evidence | PDF version (347 KB) Opens in a new windowHC 502 | Published 30 Dec 2015

Evidence given by Arlene Wilkie, Chief Executive, Neurological Alliance, Paul Morrish, Consultant Neurologist and adviser to the National Neurology Intelligence Network, and Dr Geraint Fuller, former President of the Association of British Neurologists; Dame Una O’Brien, Permanent Secretary, Department of Health, Simon Stevens, Chief Executive, Sir Bruce Keogh, National Medical Director, and David Bateman, National Clinical Director for Adult Neurology Conditions, NHS England (at 4.30pm).



UKABIF Manifesto

UKABIF has launched its third Manifesto, ‘Life After Brain Injury: Children, Young People and Offending Behaviour’, to raise awareness and improve services for those with Acquired Brain Injury, which aims to identify young people who are ‘at-risk’ of offending and keep them out of the Youth Justice System. More information is available here.

Multiple sclerosis advisory panels

The MS Society is creating advisory panels to inform its positions on public policy, and is looking for people with specific expertise or insight into the areas of health, social care, medicines, welfare or employment policy. Panel members will need a willingness to contribute their knowledge and insight into services and support that is relevant to people with MS. More information about the roles can be found here:

Specialist service Newcastle and Gateshead

Advocacy Centre North has recently launched a specialist service for people with neurological conditions in Newcastle and Gateshead. The Northern Neurological Alliance is supporting this service by providing training to the advocacy service staff.  More information, including how to refer, can be found here:

Primary care and neurology project

Update from the Neurological Alliance newsletter

To follow up the findings of our report, The Invisible Patients: Revealing the state of neurology services, which showed excessive waits for patients from their first presentations at primary care to accessing specialist care services, we carried out a survey and a roundtable discussion with GPs and other health care professionals to examine this part of the pathway in more detail. A survey of 1,001 GPs found some striking findings including:

  • 85 per cent of GPs in England were either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral of a patient to seeing a consultant neurologist.
  • The majority of GPs in England (59 per cent) feel that the local services and systems in place mean that people with neurological conditions frequently do not receive a timely diagnosis.

We are currently working on a report summarising the findings of the survey and discussion, and setting out some recommendations for improving primary care links to neurology services. We expect to be able to circulate it in the coming weeks.

NICE guideline on general neurology

Earlier this month NICE consulted on the scoping document for its general neurology guideline, following consultation workshops in December. The Cumbria Neurological Alliance’s view is that this should be a symptoms-based guideline, not excluding any particular neurological conditions. We now await the publication of the consultation response before engaging as stakeholders with the development of the guideline itself. Interested members can register as stakeholders via the NICE website to receive updates and engagement opportunities throughout the guideline development.