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:


NICE needs your help!

Message from NICE:

“The National Institute for Health and Care Excellence (NICE) is doing an important research project to understand the perceptions and experiences of our users. We would like to know what you think of us as an organisation, including how we operate and how you keep updated with our work. 

The results will be presented to our Board and by sharing your views you will play a part in shaping our products and services. Your feedback will be valued and appreciated.

To take part, we ask that you complete this short survey, which should take approximately 10 minutes, by Friday 5th May 2017. All responses will be completely confidential and remain anonymous in any reporting. 

If you have any questions about the survey, please contact

Thank you in advance for your contribution. 


Audience Insight Team National Institute for Health and Care Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom

Email: Web: NICE


Any personal data sent to NICE will be used for the purpose of conducting surveys and related user research to improve NICE services. The data may be passed to third parties in accordance with the Data Protection Act 1998 in order to carry out associated work. The information you provide will be treated in confidence and will only be disclosed as required by law including, but not exclusively, the Freedom of Information Act 2000.”


Dont forget to comment NICE Parkinson’s Quality Standard

Topic engagement on the NICE Parkinson’s disease quality standard is now open

The topic engagement exercise on the Parkinson’s disease quality standard opened 5 days ago. The topic overview published describes core elements of the quality standard and NICE are inviting you to share what you consider to be the 5 key areas for quality improvement in this area.

Please note this is not a consultation on the draft quality standard; there will be a consultation on the draft quality standard on 2 August 2017.

To submit your suggested 5 key areas for quality improvement please visit the topic webpage:

Topic page

NICE encourages you to register as a stakeholder. Comments received from non-registered organisations and individuals are not summarised in the briefing paper presented to the committee but are included as an appendix. These comments are not made available on the NICE website. However, if they result in changes to the quality standard this is recorded in the committee meeting minutes.

Responses must be submitted to by 5pm on 20 April 2017.


NICE updates


Neurology clinical guideline

NICE has now published the final scope and equality impact assessment for the forthcoming NICE guideline on suspected neurological conditions, along with the stakeholder comments that were received during consultation and NICE’s responses to these comments. These include comments from the Neurological Alliance and a number of member organisations. All documentation is available on the NICE website. If you would like to be involved in the further development of this guideline but have not yet registered as a stakeholder, you can do so via the link at the top of the page.


MND quality standard

NICE has now concluded its consultation on the draft motor neurone disease quality standard. The draft standard is available to view here.


Falls prevention

NICE has opened an engagement exercise into its forthcoming quality standard on falls prevention. The documentation and comments form are available here. This exercise will contribute to shaping the draft standard which will then go through a consultation process.

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.