Over 19,000 people affected by neurological conditions and 100 organisations back Neuro Taskforce petition
The Neurological Alliance continues to call on the government to back the one in six people the UK who have a neurological condition and improve workforce and services for the neurological community.
A delegation of people affected by neuro conditions, representatives from Alliance member organisations, and Alliance staff presented a petition to the Department of Health and Social Care on Monday 5 June 2023, calling on the government to create a UK-wide Neuro Taskforce to spearhead vital improvements in care and support for people affected by neurological conditions. The petition, signed by over 19,000 people, is a powerful call for change.
The petition was created in response to the The Neurological Alliance’s 2022 ‘My Neuro Survey’, a UK-wide survey completed by more than 8,500 people affected by neurological conditions. The results exposed significant shortfalls in mental wellbeing support, delays to accessing vital treatment and care and a lack of information and support at diagnosis.
A UK-wide Neuro Taskforce would make a real difference by making sure everyone affected by neurological conditions has access to the right care at the right time and the workforce to support them. It would provide a framework to support greater collaboration and sharing of best practice in the approaches taken to tackle problems common across all neurological conditions. Fundamentally, and most importantly, it would help to show that governments across the UK are listening to people affected by neurological conditions.
The message is clear: change is needed
Rebbecca Robinson, coproduction group member at The Neurological Alliance, who lives with multiple sclerosis (MS), attended the hand-in.
She said: “When my MS relapsed, I got through the worst of it. The neuro rehab services were brilliant. The occupational therapist (OT) saw me, the physio saw me. And the OT referred me to have some emotional support as she identified the impact the relapse was having on me. I’m so happy my GP has always listened to me and followed through. It has made me so happy the care I have received has been mostly positive but this is not the case or for all people or everywhere in the UK. For me, a Neuro Taskforce would mean that people affected by neurological conditions would know where to go for support and have access to the same level of care as I have, no matter where they are in the country.”
Georgina Carr, Chief Executive of The Neurological Alliance, said: “Despite affecting millions of people and costing billions of pounds, neurological conditions are too often at the back of the queue for funding, staffing and support. More than half of people who shared their experiences in My Neuro Survey had experienced delays to routine specialist appointments in the last year and a majority hadn’t been asked about their mental wellbeing by a healthcare professional in the past three years. The message from people affected by neurological conditions is clear – this must change.”
Highlighting real-life experiences
In addition to handing in the petition at the Department of Health and Social Care, The Neurological Alliance held a drop-in event for MPs in Parliament, which included a brand-new artwork created by the neurological community.
The photo mosaic features pictures of over 300 people affected by neurological conditions from across the UK. Each picture highlights the uniqueness of each person’s experience and needs. The image depicts hands holding each other to celebrate the unity and strength of the neurological community. Each person is unique and every person’s experience of the neurological condition is unique, and every person affected by a neurological condition needs to be able to access treatment, care and support when they need it.
Treatment, care and support at the right time
Georgina added: “We must not ignore the fact that one in six people live with a neurological condition and many are not receiving the care and support they need. There simply aren’t the workforce or services in place to provide it.
“We stand united with over 100 organisations and over 19,000 people in calling on the government to take immediate action. We urge governments across the UK to work together to establish a Neuro Taskforce to address these unacceptable gaps in care and support for people with neurological conditions and deliver real change.”
Dr Arani Nitkunan, Consultant Neurologist, said: “My colleagues and I see the devastating impact neurological conditions can have every day. Despite our best efforts to provide the best support for everyone, we are overstretched and overlooked by commissioners. Ensuring neurological conditions are tackled through a Neuro Taskforce would help us go further and mean that people with neurological conditions and services like mine are listened to at the highest forms of Government.”
The Alliance will continue to work with people affected by neurological conditions and our members to call on Government to Back the 1 in 6 and create a UK-wide Neuro Taskforce:
- We are continuing to engage with MPs, particularly those who have already pledged their support for a Taskforce, to provide the data and insight they need to back our calls for change.
- We will continue to highlight and share the experiences of people affected by neurological conditions, and their experiences of health and social care.
- We are working to secure a debate in parliament on neurological conditions and the workforce and services required to support the neurological community.
- We will work with people affected by neurological conditions, MPs, and policymakers to develop a practical framework to show what a Neuro Taskforce could and should look like in practice and how it could be implemented.
Thank you for choosing to back the 1 in 6 people living with a neurological condition in the UK, whether that’s by completing My Neuro Survey, sending in your picture for our community artwork, sharing our posts on Facebook, Twitter, Instagram and Linkedin, or giving your time, resources, experiences and expertise to support the campaign. Your support makes a real difference.
Watch this space for next steps and follow us on Twitter @NeuroAlliance for the latest news.