The NA are pleased to report that the overall picture was very positive.
- 93% of respondents either very satisfied or satisfied with membership
- Top three benefits of being members, according to respondents, are:
- Information about policy developments via newsletters, webinars and meetings
- Opportunity to affect public policy through involvement in consultations
- Raising the profile of my organisation/the condition my organisation represents through being part of a collective neurological voice
National Neuro Advisory Group updates
The NNAG is an initiative to bring together those in positions of leadership within neurosciences in order to drive forward initiatives/action to improve outcomes for patients living with neurological conditions. Read more here. Sarah Vibert is Co-Chair of NNAG, alongside Prof Adrian Williams Chair of NHS England’s Neurosciences Clinical Reference Group, and The Neurological Alliance funds the part-time NNAG project manager role (Hannah Verghese).
The most recent NNAG meeting was held on 2nd May. The meeting included presentations from the National Stroke Programme and the National Dementia Access Task Force.
A new sub-group of the NNAG focusing on care planning is undertaking research into the existence and benefit of positive care planning activities for neuro patients.
They will use the Neuro Alliance patient survey results to support their work.
Specialised commissioning neurosciences transformation project
The Neurological Alliance has been invited to sit on the expert advisory group which will provide overall steer to NHS England’s specialised commissioning neurosciences transformation project. Members attended the first expert advisory group meeting, at which an overview of the project and progress to date on each of the six workstreams was given: the neurosurgery workstreams – brain tumours (elective pathway), pituitary (low volume pathway), subarachnoid haemorrhage (emergency pathway), and the neurology workstreams – MS, epilepsy, neuro-immunological conditions.
Work will be undertaken to determine whether these can be scaled up, with the aim of defining an optimum neuro-wide model. Additional work from any other additional pathways in other condition areas will be taken into consideration. The neuro-wide model will be tested across a local footprint to refine it. Following this, tools will be developed to enable the model to be implemented via regional specialised commissioning teams (years 3-5 of the programme of work). Other outputs will include guidance on pathways, revising the new service specifications as needed, and the provision of best practice examples. Any changes to the provision of specialised neurology services will also be made during the implementation phase.
We welcome the following newest members and supporters of The Alliance:
- Matthew’s Friends
- Ring 20 Research and Support UK
- SMA Support Trust
- Teva UK
A reminder to read this excellent report from the Neurological Alliance
To mark the start of Brain Awareness Week, The Neurological Alliance published a new report; Neuro Numbers 2019. An update to the 2014 publication, Neuro Numbers highlights that the number of neurological cases has now reached at least 14.7 million in England. This equates to more than one in six people living with one or more neurological conditions.
The NA is using this new data call for greater prioritisation of neurology by the health and care system to ensure the needs of this growing patient group are met. As well as the latest prevalence data, Neuro Numbers also brings together all the latest pan-neurological data that is available for England.
This shows that the number of people being admitted to hospital with a mention of a neurological condition has increased by 24% over the five years to 2016/17.
You can read our new report on our website, along with a news story about the need for decision makers to address the issues being highlighted by neurology data and intelligence.
Read Sarah Vibert’s blog about the need for more and better data.
T: 01923 882590 M: 07903376720
The Neurological Alliance www.neural.org.uk
Follow us on Twitter: @NeuroAlliance
Two new patient reps have been elected to sit on the National Neuro Advisory Group, for a period of two years: Chris James, Director of External Affairs at the Motor Neurone Disease Association, and Chloe Haywood, UK Acquired Brain Injury Forum Executive Director. They replace Genevieve Edwards, the MS Society’s External Affairs Director, and Val Buxton, from Parkinson’s UK, who had come to the end of their terms.
The most recent rare diseases subgroup meeting included a Q&A with Adrian Williams, Chair of the Neurosciences Clinical Reference Group.
Topics discussed included how the barriers to telehealth/virtual appointments for people with rare diseases can be overcome (include tariff based objections), and ensuring the draft neurology service specification will result in services that meet the needs of patients with rarer conditions. This includes the possibility of using the spec to ensure neurologists signposting patients to appropriate information. Other recent activities for the group include contacting benefits assessment providers about information for assessors on rare neurological disease, and exploring how to support The Genetic Alliance’s work.
The National Neuro Alliance has been notified of proposed changes to NHS England’s specialised commissioning clinical reference groups. These include reducing the number of clinical representatives – removing regional representation – and reducing the number of patient public voice reps (from 3 to 2, except in exceptional circumstances).
There is also a proposition to merge the specialised pain CRG into the neuroscience CRG.
The NA responded to the consultation, raising concerns about the the potential dilution in patient voice, the reduction in clinical input across both pain and neurosciences, and the increased workload that would result from the merger.
The National Neurological Alliance submitted a brief response to the Committee’s Drugs policy: medicinal cannabis inquiry, based on new medicinal cannabis policy position (as discussed at the most recent policy group and Board of Trustees meetings). The response highlighted our concerns in this area, and our hopes that new treatments will be brought forward in future, if that is what the evidence supports.
Louise Chance from A Chance for Life and Glenys Marriott attended this regional meeting in Leeds led by Sarah Vibert, together with
- Bolton Neuro Voices Barbara Tew, Marie Oxtoby, Ian Flint and Susan Pattison
- YHANO Ruth Stockdale
It was a useful meeting and we covered a wide range of topics including the latest figures of the patient survey. A big thank you to everyone who contributed to this in Cumbria, including clinicians who kindly undertook to share the survey in out patient clinics.