To the new Prime Minister, on behalf of the one in six

07/09/2022

National political leadership to improve services for people affected by neurological conditions has never been more critical. With a new Prime Minister in post, and ministerial changes afoot, the Government has an opportunity to back the one in six people living with a neurological condition in the UK and bring about much needed change.

We need…

In listening to people affected by neurological conditions and our membership, it’s clear what we need to see from our new Prime Minister:

Urgent action to address the cost-of-living crisis

People affected by neurological conditions are among those hardest hit by the current cost-of living-crisis. Access to financial support to manage the extra costs of living with a neurological condition has never been more important.

Nearly 3 in 10 adults who responded to our UK-wide survey of people affected by neurological conditions, My Neuro Survey, did not agree that they had enough money in their household to manage well. 2 in 10 did not agree that their household had enough money to get by.

My Neuro Survey was conducted between October 2021 and February 2022. Since then, inflation and the cost of energy have continued to soar, making the financial situation for many significantly worse and disproportionately impacting those with disabilities and long-term conditions, including people with neurological conditions.

People with neurological conditions who claim both means-tested benefits – like Universal Credit or Employment and Support Allowance (ESA) – and disability benefits – Personal Independence Payments (PIP) or Disability Living Allowance (DLA) – will receive a series of additional cost-of-living payments totalling at least £1200 per household this autumn.

But benefits, which are such a vital lifeline to so many people as they deal with the extra costs of living with a neurological condition, are nowhere near keeping up with inflation. This must change.

In addition, the voluntary sector is experiencing a surge in demand, as more people are having to choose between heating or eating – an unacceptable choice. The voluntary sector has experienced huge losses in income, staff and volunteers as a result of the COVID-19 pandemic. Now they need urgent support to help cope with extra demand. Earlier this month, we joined ACEVO and many other organisations in signing a joint letter calling on government to provide targeted financial support for those charities and voluntary organisations that are on the frontline of supporting people through the cost of living crisis.

A Neuro Taskforce to tackle common problems across the UK

As of June 2022, more than 255,000 people in England are waiting for either a neurology or neurosurgery appointment on the NHS. That’s an 85% increase since June 2020.

4 in 10 respondents to our survey of people affected by neurological conditions told us their mental wellbeing needs were not being met at all. More than half of adults and 6 in 10 children and young people told us they had experienced a delay to their routine appointment with a specialist. 4 in 10 respondents to our children and young people’s survey said they hadn’t had an appointment with a specialist nurse but would like this. Delays to treatment and care can be lifechanging.

Reduced waiting times, access to treatment and support at diagnosis and beyond

Responses to My Neuro Survey highlighted many common challenges in improving access to treatment, care and support for the 1 in 6 people in the UK who live with a neurological condition. There are currently a variety of initiatives that seek to address shortcomings in treatment, care and support for people affected by neurological conditions. These include the planned UK wide Acquired Brain Injury strategy, the Scottish Government’s Framework for Action on Neurological Care and Support, a new quality statement and operational plan for neurological conditions in Wales, an ongoing Neurology Review in Northern Ireland, the NHS Scotland Centre for Sustainable Delivery Neurology workstream, the NHS England and NHS Improvement neuroscience transformation programme and the Getting It Right First Time (GIRFT) adult neurology, stroke and neurosurgery reports. A Neuro Taskforce would help to coordinate such initiatives, support their implementation and share learning across systems.

We call upon our new Prime Minister to exercise their leadership and make this happen

A Neuro Taskforce would provide a framework to support greater collaboration and sharing of best practice in the approaches taken to tackle these common problems. It would build on similar policy approaches in health and care, such as the recent Rare Disease Framework and associated implementation plans. Fundamentally, and most importantly, it would help to show that governments, including the new Prime Minister, are listening to people affected by neurological conditions.

We know that the new Prime Minister’s in-tray will not make for easy reading, but we stand ready to work with government to deliver the much-needed improvements in service and support that are so long overdue for the one in six people living with a neurological condition in the UK today.

You can read our letter to the Secretary of State for Health and Social Care here.