Celebrating achievements across the neuro community
As we publish our annual report, we reflect on the Alliance’s activities in the last financial year (July 2020 – June 2021), celebrate achievements from across the neurological community, and look to the future.
It’s been a year like no other – the neuro community continues to face extreme challenges, exacerbated by soaring NHS waiting lists, inadequate staffing in many areas of neuroscience, unwarranted variations in care throughout the country and a limited awareness of the real-life impact of neurological conditions.
Working together, making the case for change
Yet real change is happening – thanks in no small part to the commitment and hard work of our members organisations.
Increasing the involvement of people with neurological conditions
We listened to and shared the experiences of more than 1,600 people with neurological conditions, using their experiences to understand the impacts of the pandemic in the summer of 2020 and call for services to restart.
Together with FND Hope UK, UKABIF and the Migraine Trust, we spoke to more than 35 people affected by neurological conditions about what they think good care looks like. And now their feedback is being used to develop optimum pathways of care across neuroscience.
And we launched a new app – NeuroLifeNow – with the Brain and Spine Foundation making it possible for people with neurological conditions to share their experiences of care, providing real-time evidence of the impact of the pandemic on people and services.
We collected, analysed and published evidence, providing valuable insight in three key reports:
- June 2021 – Lessons Learnt from Covid-19 – with the National Neurology Advisory Group.
- November 2020 – Out of the Shadows – What needs to change for people with rare neurological conditions.
- July 2020 – Restarting services for people with neurological conditions.
Increasing the national profile of neurology
We made sure that people with neurological conditions and organisations supporting them were represented at a policy-making level, by:
- Acting as a representative on, and making recommendations to, NHS England and NHS Improvement, including the clinical reference group for neuroscience and national elective care recovery taskforce.
- Co-chairing the National Neuroscience Advisory Group.
- Supporting and encouraging positive changes to the f new NICE Quality Standards for suspected neurological conditions.
- Hosting a joint All Party Parliamentary Group (APPG) meeting, and providing a space for people with neurological conditions to directly share their experiences with Parliamentarians.
- Widening our reach in Westminster Parliament, working directly with more than 50 MPs and Peers.
Supporting local action to improve neurological services
- Meeting online with Regional Neurological Alliances every six weeks.
- Facilitating a Chatham House discussion on “Will ICSs improve treatment, care and support for people with neurological conditions”, encouraging free and frank discussion and vital information sharing.
- Supporting the South London Operational Delivery Network to plan, develop and improve services across the area.
These are just some of our collective achievements in the past year. You can download our full annual report here.
Looking to the future
We continue to campaign for change, focusing on the priorities set by our members and people affected by neurological conditions:
As of 25 October 2021, we’ve begun #MyNeuroSurvey, our national survey of people with neurological conditions, and we will use the results to lobby the UK Government, policymakers and the NHS for better services for people with neurological conditions. We’re going to work closely with people affected by neurological conditions to reflect on the findings, and support them to campaign for the change to health and care they would like to see.
Importantly, we will continue to put equity, diversity and inclusion at the heart of what we do. This will include a focussed literature review looking at health inequalities amongst people with neurological conditions, and consider our own recruitment practices too.
Finally, we will lobby for NHS and care reform to work for people with neurological conditions, and in particular work with people with neurological conditions to understand what they would like to see from the forthcoming cross-governmental Acquired Brain Injury and neurological condition strategy.
Together, we will achieve our collective mission
Thanks to the hard work of people with neurological conditions, our member organisations and the wider neurological community, we are one step closer to making sure everyone affected by a neurological condition can access high quality care and support to meet their needs at every stage of life, whoever they are and wherever they live.
In spite of the challenges of this year, we have a lot to celebrate. Share your achievements and highlights from the year with us using the hashtag #NeuroCelebration on Facebook, Twitter and Instagram.