Update from our Chair: the year ahead

06/08/2024

Cath Stanley, Chair of Trustees

July represents the start of our new business year at the Alliance. This year, it coincides with the arrival of a new government. In my role as Chair of The Neurological Alliance’s Board of Trustees, I wanted to set out what both things mean for our work in the year ahead.

Before looking forward, it’s worth taking a moment to look back.

Neuro Champions in Parliament

Like many, we were somewhat surprised by the timing of the recent general election. We were able to react quickly and with the support of you, our members, and our fabulous coproduction group we launched the #NeuroChampion campaign. This called on prospective parliamentary candidates to pledge their support to improve workforce and services for people affected by neurological conditions in the next Parliament.

Almost 1,000 people supported the campaign contacting over 2,200 candidates in 451 constituencies across the UK. Together, we ensured that neurological conditions were included in discussions during the election campaign and that prospective MPs understand the impact of these conditions.  Leading to the need for action to improve treatment, care and support for the one in six people living with a neurological condition in the UK.

Thanks to your support,11 Neuro Champion MPs were elected to Parliament, providing a strong voice for change.

Delivering change in the new Parliament

In the year ahead, we’ll be working with them and the wider neurological community, and continuing to push for much needed improvements in services and support for people affected by neurological conditions.

This includes our ongoing call for a UK-wide Neuro Taskforce to provide the framework necessary to deliver real change, an ask that we highlighted in a letter to party leaders ahead of the General Election, backed by 36 Alliance member organisations.

The new Labour government has committed to delivering 40,000 more NHS appointments a week to reduce waiting lists. In the run-up to the general election, we were interested to hear the now Secretary of State for Health and Social Care talk about what bringing down waiting times would mean for neurology appointments, and his stated aim to fund 62,000 extra neurology appointments per year. Hear the conversation on the Movers and Shakers podcast.

Together we’ve been raising the issue of long and growing waiting lists for our community with successive Health Secretaries and this commitment is very welcome. As ever, the devil will be in the detail, and we’ll be working with members, professional bodies and others to ensure the government delivers on this pledge.

A bigger and better My Neuro Survey

We have just launched  the next iteration of our national neurological patient experience survey – My Neuro Survey. Previous survey data has been used to inform service improvement in the NHS and to underpin our national influencing activities, most recently the #BackThe1in6 campaign. We’re working hard to ensure this year’s survey is bigger and better than ever and provides strong evidence to inform and support our collective work.

As well as building on the success of our first children and young people’s survey, we’re excited to be developing a survey specifically for carers of people affected by neurological conditions. This year’s survey will also be rolled out in the Republic of Ireland for the very first time, with the support of the Neurological Alliance of Ireland. We really want to increase the diversity of respondents, making sure we are capturing the experiences of our whole community and further strengthening our collective voice for change. Please do continue to support the survey as you have done so brilliantly in previous years. The survey runs until 22 November 2024 – we will be able to share the results with you before Summer 2025.

Supporting NHS transformation

The NHS neuroscience transformation programme is entering a vital stage, as Integrated Care Boards (ICBs) will receive responsibility for commissioning of many services for people affected by neurological conditions from April 2025. The new adult neurology service specification and neurorehabilitation service specification are also due to be published before April 2025. We will continue to play an active role in the transformation programme as a member of the Programme Board and member of the adult neurology clinical reference group (CRG). We will continue to ensure that the needs of people affected by neurological conditions are represented in these processes.

We’re stronger together

In looking ahead to what’s in store over the next year, together we’ve ensured that neurological conditions are moving up the list of priorities in the NHS, in Parliament and in the new government. I can’t thank you, our members, and the neurological community enough for all your support to date – we simply couldn’t do this without you.

It’s clear that we’re in for another incredibly busy year but with your support, I’m very excited about what we can achieve. We’re stronger together.