The Alliance Neurological Programme and Neurological Alliance of Scotland – Lived Experience of Neurological Conditions Survey | 04 March 2018

 


By Ewan Dale, Trustee, ME Association.

Scottish Neurological Services Survey 

As part of the development of “Scotland’s Action Plan for Neurology”, The Alliance and The Neurological Alliance for Scotland are asking patients and carers to participate in an online survey:

Lived Experience of Neurological Conditions Survey

This survey is for all conditions which present with recognisably neurological symptoms, whether or not these are accepted or catered for in current neurological services.

“This is your opportunity to make a difference for people with neurological conditions such as Multiple Sclerosis, Epilepsy, Parkinson’s Disease, Huntington’s Disease, Motor Neurone Disease, Cerebral Palsy, ME, Migraine, Stroke, and Brain Injury. And if your neurological condition is not on this list, please still take part. We need to hear from a wide range of people with neurological conditions.

 

“Now is the time for neurological conditions to take the limelight. The Scottish Government is developing an Action Plan for Neurological Conditions. The Alliance, in collaboration with the Neurological Alliance of Scotland, is gathering and leveraging the powerful voices of people like you within the neurological community.

 

“We are seeking to shape the priorities for this upcoming action plan, and for that we need to hear from you. This survey aims to understand what your priorities are for the care and support you receive.”

The online survey is quite long, but can be completed in stages, and changes and corrections can be made before submitting your responses.

Disclosure of any personal details is optional, so participation can be anonymous. Anyone choosing to respond may benefit from noting down their responses separately before copying them to the online pages.

It could be tempting to try to include all the history of your personal illness, and all the various campaigning issues. However, it may be more judicious to (e.g.) concentrate on the worst aspects, and summarise the continuation, repetition and undue scale of issues over the years, to try to make the most impact.

As ever, this survey will go to a mix of clinicians, civil servants and patient organisation representatives, who have various responsibilities for delivering the current neurological and related service provisions across NHS Scotland.

Our responses will be amongst the whole range of responses from across all neurological conditions, whether remitting/relapsing, and/or life-threatening. So we need to make impact on our own behalf, but also for common cause.