Neurological Alliance 2017 Manifesto: A call to action for neurology

Posted on 25 May 2017

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The Neurological Alliance - a collective voice for organisations working to make life better for people in England living with neurological conditions - has produced a Manifesto that sets out five calls to all parliamentary candidates for improving neurology services.

Tourettes Action is a member of The Neurological Alliance, and we are in full support of their Manifesto which sets out 5 calls to improve neurology services in the NHS.

The Manifesto is based on a survey of thousands of patients with neurological conditions, addressing their current experience of navigating the health service.

You can read the full Neurological Alliance Manifesto here.  Below is a summary of the five calls to action:

1. Access to specialist care must be:
• a reality for all people with neurological conditions, from diagnosis to the end of life
• available across all care settings – in the home, in the community and in hospital

2. Primary care professionals must:
• provide a timely referral or diagnosis for people with neurological conditions
• sign-post patients to condition-specific information where appropriate
• be aware of key signs and symptoms indicating a neurological condition
• be supported with adequate medical school and on-the-job training regarding neurological conditions

3. Research into new and better treatments for neurological conditions must:
• receive ring-fenced UK Government investment and leadership to match the burden and full spectrum of neurological conditions
• be encouraged as part of an environment that promotes clinical trials in the UK

4. Decisions around treatments for people with rare and complex condition must:
• be taken in consultation with patients, their carers and voluntary sector groups
• not result in restrictions or rationing based on cost alone
• be considered by Parliament before being implemented – any decisions to restrict the availability of NICE-approved treatments should be taken by democratically-elected politicians

5. Mental health needs of those with neurological conditions must:
• be given particular consideration in the design and delivery of services
• be prioritised as part of the focus on parity of esteem for people with long term conditions

This Manifesto (among many other patient groups) is representing people living with Tourette Syndrome.  If you agree with the calls to action and want to see the next government take action on these key issues here is how you can get involved:

You can help inform parliamentary candidates of the key issues for people living with Tourette Syndrome (TS) by contacting your local parliamentary prospective candidates (PPCs).  Inform them of your experience and how TS affects your daily life.  Let them know how you think the health service could be improved to better support people living with TS.  There will also be opportunities to talk to candidates in person at canvassing events in the lead up to the general election.

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