National Neurological Alliance

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/

 

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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.

National Neuro Alliance Manifesto

23rd May 2017

Neurological Alliance Manifesto published

We have published our Manifesto 2017: a call to action for neurology. We set out five calls for improving neurology services, based on what thousands of patients with neurological conditions have told us about their current experiences of navigating through the health service.

We are asking all parliamentary candidates to help us address these key issues for the millions of neurology patients in England:
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

Read and download the manifesto here and please share widely.

 

APPG on Primary Care and Public Health

The All Party Parliamentary Group (APPG) on Primary Care and Public Health is holding an “inquiry into Managing Demand in Primary Care: the case for a National Strategy”. A call for evidence has been issued, with a deadline for submissions of 3 April 2017.

Details are available online: http://www.pagb.co.uk/content/uploads/2017/02/Call_for_evidence_Final.pdf

The Migraine Trust will be submitting a response and the Alliance is currently drafting a submission.

Case studies required for the National Neurological Alliance

Mental health report

As neurological conditions relate to the brain and nervous system, there is an increased complexity in the interaction between physical needs and broader emotional, cognitive and mental health needs. We have been working on a report examining the different aspects of living with and accessing treatment for mental health conditions if you also have a neurological condition. The draft report is being finalised and will be published later this year.

However, case studies would be a very useful addition to the report – can you please let me know if you have a case study for possible inclusion? Stories covering the following – either a positive story outlining where neurology patients have received good support to meet their mental health needs or a negative story, high-lighting the consequences of difficulties in accessing support for mental health – would be helpful.

For example:

  • Provision of good quality information and support which has enabled prevention and/or self-management
  • Access to therapeutic interventions or treatments which take account of the underlying neurological condition
  • Access to regular screening for emotional, cognitive and mental health needs
  • Working with a neuropsychiatrist or receiving a neuropsychiatric assessment

Contact Elaine.Cooper@neural.orguk

 

House of Lords – follow up to the January debate

Update from the Neurological Alliance

‘In following up the House of Lords debate on the progress the government has “made in improving neurological services in England”, called by Baroness Gale, we have secured a meeting with Lord O’Shaughnessy, Parliamentary Under Secretary of State at the Department of Health, on 4 April. We also have a pre-meeting with Baroness Gale and will be briefing her and some of the other peers who spoke at the debate in advance of the 4 April meeting.  We will update on the outcome of the meeting with the Minister in our next newsletter.

For those who may have missed the debate, the transcript is available online, as is our

briefing note.’

VCSE Health and Wellbeing Programme

The Neurological Alliance has submitted a bid to join the VCSE Health and Wellbeing Alliance.

The bid was submitted jointly with the Neurological Alliance pan neurology member, Sue Ryder. This is a new programme to enable the Department of Health, NHS England and Public Health England to work together with voluntary, community and social enterprise organisations to “drive transformation of health and care systems to promote equality and address health inequalities and help people, families and communities to achieve and maintain wellbeing.” The outcome will be reported at end of March.

New Patient Experience survey report published

The Neurological Alliance has published the new patient experience survey report “Falling Short – How has neurology patient experience changed since 2014?

The full report is available http://neural.org.uk/updates/278-New-Neurological-Alliance-patient-experience-report-2017

This is a follow up to the “Invisible patients” report published by the Alliance two years ago. The headline findings show that patient experience has become worse since 2014 across all key measures, including time taken to diagnosis, access to specialists and experience of on-going care.

This is, however, balanced by the encouraging signs for neurology in terms of emerging new national initiatives.  The report calls for all parts of the health system to work together to ensure that by 2018 we can report a turnaround in patients experience, with all people with neurological conditions accessing the care they need and deserve.

 

STP level NHS RightCare data

Published in December 2016, “Where to Look” packs for Sustainability and Transformation Plan (STP) footprint areas are available on the NHS England web site. They contain data from the CCG Commissioning for Value Where to Look packs, published in October 2016, but collated at STP footprint level. The info in the packs includes headline opportunities, improvement opportunity tables and pathways on a page showing how CCGs in each STP differ from their peers.

You can check out Cumbria plans here: