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.

The post Update from our Chair: the year ahead appeared first on The Neurological Alliance.

People living with neurological conditions across the UK and Ireland are being asked to take part in the largest neurological survey to help improve vital services and support.

The Neurological Alliance – a leading coalition of over 90 charities working to transform quality of life for people with neurological conditions – runs My Neuro Survey every two years to gain invaluable insights into care, treatment and support across the country. This year, for the first time, we are launching a new survey looking at the experiences of friends and family of people affected by neurological conditions too (also known as “informal carers”).

Partnering across the UK and Ireland

The Neurological Alliance (England) has partnered with The Neurological Alliance of Scotland, The Neurological Alliance Wales, The Northern Ireland Neurological Charities Alliance, and, for the first time, The Neurological Alliance of Ireland and Revealing Reality, a social research company, to produce the surveys.

Why is having your say important?

One in six people have a neurological condition – a condition that affects the brain, spine and/or nerves. There are over 600 neurological conditions, including dementia, ataxia, migraine, epilepsy, Tourette syndrome, Parkinson’s, multiple sclerosis, motor neurone disease and cerebral palsy.

The survey – which had over 8,500 responses in 2021/22 – asks questions about daily life, mental wellbeing, diagnosis, treatment and support, and access to research.

Your experiences help to build an accurate picture of the quality of treatment, care and support for people with neurological conditions. They will help show where access to and quality of care is good, and where it is lacking or could be improved. Previous survey results have been used to improve services in hospitals, develop new specialist centres, support business cases for new healthcare professionals and spark debate in Parliament.

Georgina Carr, CEO, The Neurological Alliance, said:

“Everyone’s experience of life with a neurological condition is unique, and that’s why we want as many people as possible to fill in the My Neuro Survey. We know that people across the country are not always able to access the right treatment and support, and the costs of living crisis has made the impact of neurological conditions even greater. It has never been more important to make your voice heard.

“The more responses we receive, the more effective we can be in campaigning for change and improving care and support for people with neurological conditions across the country. We believe everyone should have access to quality, joined up neurological care, whoever they are, wherever they live.”

How do I take part?

There are three ways people can fill in the surveys:

• Online, through this link
• By requesting a paper copy:
  • In the UK, requesting from the Neurological Alliance (England) by calling +44(0) 1923 882 590 (standard network rates apply) and leaving a voicemail, or emailing survey@neural.org.uk
  • In the Republic of Ireland, requesting from the Neurological Alliance of Ireland by calling +353 (0) 86 1216957 or emailing advocacy@nai.ie
• By phone by calling Revealing Reality on +44(0)20 7735 8040 (standard network rates apply). Please also call Revealing Reality if you would like to complete the survey in a language other than English or Welsh.

Thank you!

The post We want you! My Neuro Survey is now open appeared first on The Neurological Alliance.

Thanks to your support, we’ve made some great progress towards improving support for people affected by neurological conditions, but we’re not stopping there.

Here are some of the things you’ve helped to achieve through the #BackThe1in6 campaign so far. Please help to keep that momentum going!

Achievements so far

• Together, we’ve made the neurological community heard in Parliament, sharing experiences of treatment, care and support with MPs and policymakers.
• In 2021/22, over 8,500 people shared their experiences in My Neuro Survey, building a picture of treatment, care and support for people affected by neurological conditions throughout the UK.
• We use this evidence to call upon the government to create real change and improve workforce and services for everyone affected by neurological conditions.
• 19,049 people signed the #BackThe1in6 petition for the one in six people living with a neurological condition in the UK, and calling on governments to establish a Neuro Taskforce.
• 1,468 people invited their MP to the petition hand-in event, reaching 556 MPs.
• 22 MPs attended the Parliamentary drop-in event, many because they had received letters from constituents asking them to attend. These MPs and many more also received a briefing, giving them vital evidence to make the case for change.
• 300+ people sent in their #PicsForThe1in6. Together, these pictures formed the community video portrait highlighting the neurological community, which was then shown in Parliament.
• 20 parliamentary questions informed by the campaign have been have been tabled so far, and one House of Lords debate.
• 26+ pieces of press coverage were generated about the campaign.
• Almost 1,000 people asked their future MPs to become Neuro Champions before the 2024 general election, and to commit to speaking up for the neurological community in Parliament.
• Together, we reached 2,222 candidates in 451 constituencies.
• And 11 Neuro Champions have been elected to Parliament.

Thank you

None of this would have been possible without the support of our member organisations and everyone affected by neurological conditions around the UK.

Next steps

Together, we will keep campaigning for change until everyone affected by neurological conditions gets the right care, treatment and support at the right time. Please make your voice heard and complete My Neuro Survey 2024 now. Thank you.

The post What has the #BackThe1in6 campaign achieved so far? appeared first on The Neurological Alliance.

Parliamentary support has never been more needed

The #NeuroChampion campaign argues that support from future MPs has never been more crucial. Neurological conditions are the leading cause of disability worldwide and affect 17,000 people on average in a UK Parliamentary constituency.  

Access to the right care, treatment and support is critical – the right care at the right time means people can stay healthy and live well for longer, whether this means being able to complete day-to-day tasks, being able to socialise, or staying in education and work. But in My Neuro Survey 20% of adults affected by neurological conditions reported waiting more than a year from seeing a GP to seeing a neurologist.

The campaign also argues that ensuring people with a neurological condition access the right treatment, care and support at the right time could save the UK economy £30 billion a year and improve millions of lives.

The #NeuroChampion campaign is supported by Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance,

Take part

The #NeuroChampion campaign aims to gather public support and influence prospective parliamentary candidates (PPCs) to commit to using their voice to improve treatment, care and research now and in the future.

The Neurological Alliance encourages everyone to participate in the campaign by contacting their local parliamentary candidates through the campaign’s e-action. This easy-to-use tool allows people to write to prospective parliamentary candidates in their area and invite them to pledge their support as a #NeuroChampion.

As Neuro Champions prospective parliamentary candidates are asked to pledge their support for the neurological community and use their voice and influence to improve treatment, care and support for millions of people in the UK who live with a neurological condition.

Georgina Carr, Chief Executive of The Neurological Alliance, said:

“Neurological conditions can affect anyone at any time. 1 in 6 people in the UK live with one or more neurological condition. But there simply aren’t the workforce or services to provide the support they need. This must change, for everyone. With your support, future MPs and the next government have the power to achieve this. Please join the neuro champion campaign and write to your parliamentary candidates now. Together, we are a strong voice for change.”

Take action now

To take part in the campaign, please visit the #NeuroChampion website and follow the instructions to send a message to your local candidates.

Pledge support

If you are a prospective parliamentary candidate, you can find out more about becoming a a #NeuroChampion and pledge your support now.

The post Neurological Alliance launches #NeuroChampion campaign ahead of UK 2024 General Election appeared first on The Neurological Alliance.

The guidance is important, as it sets out key areas of activity for the health service, and what services will be measured against nationally. For people affected by neurological conditions and members, the guidance provides a steer on what areas the NHS see as important to change or improve.

The targets

The guidance includes more than 30 targets for the health service, including many that are relevant to services for people affected by neurological conditions:

• Improve community services waiting times with a focus on reducing long waits
• Eliminate waits of over 65 weeks for elective care as soon as possible and by September 2024 at the latest (except where patients choose to wait longer or in specific specialties)
• Increase the proportion of all outpatient attendances that are for first appointments or follow-up appointments attracting a procedure tariff to 46% across 2024/25.
• Improve patients’ experience of choice at point of referral
• Improve performance against the headline cancer 62-day standard to 70% by March 2025
• Improve performance against the 28 day Faster Diagnosis Standard for cancer to 77% by March 2025 towards the 80% ambition by March 2026
• Increase the percentage of cancers diagnosed at stages 1 and 2 in line with the 75% early diagnosis ambition by 2028 
• Increase the percentage of people that receive a diagnostic test within six weeks in line with the March 2025 ambition of 95%
• Establish and develop at least one women’s health hub in every ICB by December 2024, working in partnership with local authorities Mental health
• Increase the number of adults and older adults completing a course of treatment for anxiety and depression via NHS Talking Therapies to 700,000, with at least 67% achieving reliable improvement and 48% reliable recovery
• Increasing the dementia diagnosis rate to 66.7% by March 2025
• Ensure 75% of people aged 14 and over on GP learning disability registers receive an annual health check in the year to 31 March 2025
• Reduce reliance on mental health inpatient care for people with a learning disability and autistic people
• Continue to address health inequalities and deliver on the Core20PLUS5 approach.

Key target on outpatient follow-up dropped

NHS England has dropped their previous target to cut outpatient follow ups by 25 per cent, which is welcome news. Instead, this is being replaced by a target based on the ratio of all outpatient attendances compared to those which are “pathway completing”. The new national target is specifically to “increase the proportion of all outpatient attendances… attracting a procedure tariff [ie complete a patient’s pathway] to 46 per cent across 2024-25”.

Outpatient efficiencies will be driven by “transformation approaches, including patient initiated follow-up (PIFU) and remote monitoring… We will spread and scale the further faster approach to support this, sharing learning and actions in key specialties”. Neurology and Geriatric Medicine are included in the Further Faster programme. The recommendations are linked to the Getting It Right First Time (GIRFT) approach.

Workforce increases to be justified

The guidance also asks trusts to review and justify their staffing increases over the last four years, saying there must now be a drive to “consolidate” services and workforce. Integrated care boards are expected to work with acute trusts to complete a full analysis of current productivity compared to that in 2019-20 and put in place improvement plans.

There is a shortage of specialists for services for people affected by neurological conditions. We will be urging NHS England and Trusts to ensure any improvements to the workforce in recent years are not lost through this measure.

Focus on mental health and primary care

The guidance has once again focussed on mental health. In particular, every Integrated Care System (ICS) should ensure that people with mental health needs, including children and young people, are explicitly included in the plans to recover services.

Every Trust is also expected to have a designated lead for the primary–secondary care interface, and Integrated Care Boards (ICBs) should “regularly review progress” on how secondary care services, including neuroscience services, are working with primary care.

You can find out more about key NHS England workstreams related to neuroscience here. If you have any questions about these, or on the new operational guidance, please contact us  (info@neural.org.uk)

The post NHS England Operational Planning Guidance for 24/25 published appeared first on The Neurological Alliance.

443 million years of healthy life lost

Researchers calculated the overall “burden” of neurological conditions, using Disability Adjusted Life Years (DALYs) – a time-based measure that combines years of life lost due to premature mortality and years of life lost due to time lived in “states of less than full health”, or years of “healthy” life lost due to disability.

In Western Europe, the ten conditions that accounted for the greatest nervous system DALYs in 2021 were migraine, stroke, dementia, diabetic neuropathy, autism, nervous system cancer, epilepsy, neurological complications due to preterm birth, neonatal encephalopathy and spinal cord injury.

The research found that neurological conditions were responsible for 443 million years of healthy life lost due to illness, disability, and premature death (disability-adjusted life years) in 2021, making them the top contributor to the global disease burden, ahead of cardiovascular diseases.

Collectively, neurodevelopmental and paediatric conditions were estimated to account for almost a fifth of the total neurological burden worldwide, equivalent to 80 million years of healthy life lost in 2021.

An opportunity to revolutionise care

The study will support the World Health Organization’s Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022–2031 (IGAP) which aims to reduce the impact and burden of neurological conditions and improve the quality of life of people with neurological conditions. You can read more here.

The UK is signed up to this Plan as a member of the WHO. To date, no assessment has been made of the UK’s delivery against its recommendations.

The research also follows new evidence from the Economist Impact Unit, which confirmed neurological conditions account for more than £96 billion annually in the UK. Importantly, with the right treatment and support, costs could be reduced by more than £30 billion.

Georgina Carr, Chief Executive, said:

“This groundbreaking research underscores the urgent need for action. Together, we can reduce the impact of neurological conditions across the globe and here in England. With the backing of over 19,000 individuals and 100 organizations, we are steadfast in our call for the UK Government to establish a Neuro Taskforce. This Taskforce would serve as the catalyst for addressing these challenges and revolutionizing services and support for the 1 in 6 people with a neurological condition. Most significantly, it would signal the Government’s responsiveness to the needs of the 1 in 6 individuals living with a neurological condition.”

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The latest action plan builds on the 2021 UK Rare Disease Framework and previous plans published in 2022 and 2023 with a continued focus on four priority areas:

• Faster final diagnoses
• Increased awareness among healthcare professionals
• Better co-ordination of care
• Improving access to specialist care, treatment and drugs

Alongside a progress update on the 29 actions set out in previous plans, the 2024 action plan includes 7 new actions aligned with the priority areas above.

We were pleased to support the development of the latest action plan as members of the England Rare Disease Action Plan Patient Advisory Group. This included attending a series of meetings and providing feedback on earlier drafts to the Department of Health and Social Care, informed by consultation with our rare conditions members.

Access to mental health support

The Alliance has previously raised concerns about the lack of actions to improve access to mental health support for people with rare neurological conditions. We know that some people with rare neurological conditions, including Huntington’s Disease, are refused access to mental health support due to their neurological condition.

We welcome the action taken by NHS England to remind Integrated Care Boards (ICBs) and providers that mental health services should not exclude anyone as a result of their neurological diagnosis. There is also a requirement for all new and revised NHS England service specifications to consider a person’s psychosocial needs and ensure coordinated mental health support.

We will continue to closely monitor the situation regarding equity of access to vital mental health services and support for the neurological community, including people with rare neurological conditions.

Transition from paediatric to adult services

Action to improve the transition process from paediatric to adult services for people affected by rare conditions were included in the 2023 action plan. This is a vital issue for many young people affected by rare neurological conditions and those who support them. Findings from My Neuro Survey showed that 84% of young people in England were not offered a named worker to support the transition to adult services, but would find this helpful.

Following a public consultation, NICE published an update to the transition quality standard including a new statement on the need for a “co-ordinated transition plan”, developed by all relevant services together with young people and their families or carers, setting out when and how their care will move to adult services. The Alliance supported the new statement in our consultation response. However, we know that many services do not provide transition support as recommended by NICE.  This must change.

Rare Diseases Quality Standard

Agreed standards of care are really important in driving improvements and tackling variation in health and care services. Through the work of the UK Rare Diseases Forum, a group set up to inform and support the delivery of the Rare Disease Framework and national action plans, an Independent Advisory Group was established to scope a potential quality standard for rare diseases.

Quality standards are developed by the National Institute for Health and Care Excellence (NICE) and set out what good looks like for specific services and include clear actions to improve care and track performance.

We’re pleased to have been invited to support this work as members of the Steering Group. We will work with our rare conditions member organisations to ensure any potential rare diseases quality standard delivers for people affected by neurological conditions.

New actions for 2024

New actions included in the Rare Disease Action Plan for England from 2024 include:

• Implement “networked models of care” for people with rare diseases. This will help people affected by neurological conditions and professionals access specialist expertise is available, whilst allowing people to be treated and cared for as close to home as possible
• Map and measure the geographic spread of people  accessing highly specialised services. Highly specialised services are delivered in a small number of expert centres, usually no more than three, and have small caseloads (usually no more than 500 people). The mapping will build on previous data from 2020.
• Developing a genomics communication skills resource to support the training of healthcare professionals in conversations about genetic testing.
• Developing the specialist genomics workforce through the Genomics Training Academy (GTAC)
• Develop a funding mechanism that should encourage centres to undertake whole body scans on individuals with rare genetic conditions, resulting in a predisposition to developing cancer prematurely
• Review the effectiveness of the Innovative Devices Access Pathway (IDAP) pilot in supporting access to medical devices, including diagnostics, for people living with rare conditions.
• Publish and disseminate a health inequalities toolkit, to support people working within highly specialised services to reduce health inequalities.

Ensuring the plan delivers for people affected by rare conditions

Delivering on the actions and priorities of the Rare Disease Framework and Action Plan is more important than ever. People with neurological conditions, particularly rare neurological conditions, are waiting too long for support. At the same time, the way in which NHS and care services for people affected by neurological conditions are planned and provided is changing.

 We will continue to work with the Department of Health and Social Care and engage with system partners to ensure that these changes work for our community, including our rare disease community.

We also need to see action from government to address the chronic shortages facing the neuro workforce. Without significant increases in the number of healthcare professionals, or action to more equitably distribute specialist knowledge across the country, the necessary improvements to services and support for people with rare neurological conditions will be undeliverable.

It is vital that the UK Rare Disease Framework and national action plans deliver meaningful improvements in treatment, care and support for people affected by rare neurological conditions.

We need to see action to improve indicators and metrics for assessing if and how this work is improving outcomes and experience, developed with people affected by rare conditions and those who support them.

The post Unpacking the 2024 England Rare Disease Action Plan  appeared first on The Neurological Alliance.

This week new research from the Economist Unit, sponsored by Roche, found that neurological conditions cost at least £96 billion annually – and that these costs could be reduced by more than £30 billion, if care was improved, and existing options for treatment and care were implemented consistently across the UK.

I spoke at the parliamentary launch of the report, The value of action: mitigating the impact of neurological disorders in the United Kingdom, this week. The Neurological Alliance is continuing to call on the Government to establish a Neuro Taskforce without delay.

As Chief Executive of the Alliance, I believe that implementing the Neuro Taskforce has the potential to have a massive impact on people affected by neurological conditions as it will set out a framework showing how to provide care that meets people’s needs, makes efficient use of resources and addresses economic challenges.

Here is what I spoke about.

Hear a radio interview about the report:

Meet Sarah and Mohammad

Sarah (not her real name) was diagnosed with Parkinson’s a few years ago after experiencing problems with her sleep and a slight tremor. In her words, she was “passed from pillar to post for two years in search of a diagnosis”. She told us that she hadn’t been able to access physiotherapy when she needed to. She believes that has cost her her ability to walk.

Mohammad (not his real name), lives with his wife and two children. His son lives with a rare form of epilepsy. Mohammad’s son now lives with PTSD due to his seizures, and has just turned 16. Mohammad told us that his son has now been passed from  paedatric to adult neurology services, but as he isn’t 18, they won’t accept him. That means his son, together with his father and family, is left with no one to help.

These experiences, which are based on stories shared with the Alliance, are similar for thousands of people across the UK.

12,000 people waiting more than a year for answers

1 in 6 people in this country live with a neurological condition. In fact, it is highly likely,  that everyone in the UK knows someone with a neurological condition or has one themselves.

Here at the Neurological Alliance, we bring together organisations to work together to bring about much needed improvements to treatment and support for everyone affected by a neurological condition.

Over 90 organisations working together to address common challenges

Our member organisations support hundreds of thousands of people affected by neurological conditions every year, and invest millions into research. There is so much in common in terms of the challenges we face and the changes that are needed for everyone living with a neurological condition – there is a common need to, improve access to healthcare professionals who have knowledge and understanding of neurological conditions and how they can affect life,  improve access to comprehensive support right now and drive research into better support and treatments in future.

It is in all of our interests to make sure that when something goes wrong with our nervous system (neurological conditions can affect not only the brain, but the spinal cord and nerves too: our whole nervous system), that we can access the right treatment and support in a timely way. The report is yet another reminder of the importance of that, not just for an individual, but for society too.

Yet for too many people, they do not access the right support when they need it most.

Cutting waiting lists improves lives

Parliamentarians often talk of the need to cut waiting lists. Let’s consider this from the perspective of neurology and neuroscience . More than 12,000 people throughout  England have been waiting for more than a year to be seen by an NHS neurologist or neurosurgeon.

In our most recent patient experience survey, one in five people told us they had to wait more than a year from being referred by their GP to seeing a neurologist.

Imagine that: waiting for more than 12 months as your condition changes or worsens. 12 months of missing out on treatment which could improve your life or even save it.

Better for people with neurological conditions, better for everyone

The report confirms that we have some way to go. The economic cost of neurological conditions is at least £96 billion – that is more than the education budget, and three times the defence budget.

It also confirms that we can improve. If we optimised care, we could slash the direct and indirect costs by more than £30 billion.

Some systems are providing excellent support now

One person with MND told us in  My Neuro Survey that “they had won the postcode lottery”, because the NHS in their area have been exemplary in ‘joined up’ thinking and support. They had support co-ordinated by their MND nurse, GP and neurology specialist and it included occupational therapy, adaptations, speech and language therapy, wheelchair services, dietetics, physiotherapy, and respiratory support.

If we can provide comprehensive support for one person, why can’t we do that for everyone?

This is what we as The Neurological Alliance are campaigning for.

The time for change has never been more pressing

The pipeline of treatments for many neurological conditions is extremely promising – new treatments for dementia and myasthenia gravis are within reach. Investment in MND research means there is a real prospect of changing the conversation between neurologists and people with MND from palliative care to available treatments and, ultimately, a cure.

But, investment and success in research will not translate into improvements in quality of life if we don’t act now.

And  we already have lots of treatments, interventions and support that could help now. But they are out of reach for many people.

That is why we are continuing to call on all UK government to  establish a Neuro Taskforce to set out a framework to improve treatment care and support people affected by neurological conditions.

Our calls for change are not new

More than 19,000 people and 100 organisations have called on Government to establish a ‘Neuro Taskforce’ a dedicated group tasked with setting out plans for improvement, and lessons from areas that are providing timely support. Nine months on from handing in the petition, and Government has not answered this call.

Government can and must do better

Answer our calls and establish a Neuro Taskforce, as has been established in other specialty areas.

Let’s finally prioritise the needs of the 1 in 6 with a neurological condition. It is too costly for all of us, if we don’t act now.

Read more about the report here.

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Implementing existing interventions would reduce the economic impact of neurological conditions

According to the report published this week, The value of action: mitigating the impact of neurological disorders in the United Kingdom, implementing existing interventions, including preventative care, therapeutic treatment and rehabilitation, would significantly reduce the economic impact of neurological conditions. But the lack of an overarching strategy, insufficient staffing and expertise and inadequate access to care mean this potential saving is not currently being realised. The fragmented approach to care means people are often unable to access the diagnosis, treatment and support they desperately need.¹

The report estimates the direct costs of just ten neurological conditions to health systems in the UK, as well as the indirect economic burden of lost productivity for people affected by neurological conditions and their friends and family.

Affecting millions and costing billions

The report found that in 2019, the aggregate estimated cost came to 4.3% of GDP or £96bn. The real economic cost is likely larger, given there are more than 600 different neurological conditions. Of the costs considered in the calculation, roughly half (53%) come from the “indirect” cost of lost time in potential employment. This could be avoided with the right treatment, care, financial and employment support.

Renewed calls for a Neuro Taskforce

The Neurological Alliance, together with the MS Society, Parkinsons UK, Epilepsy Action and the Association of British Neurologists, met in Westminster to mark the launch of the report, and renew calls on MPs to support the creation of a Neuro Taskforce.

In 2023, more than 19,000 people and 100 organisations signed a petition calling on the UK Government to establish a Neuro Taskforce, which would set out a clear plan to improve care for people affected by neurological conditions. Once established, the Neuro Taskforce will provide the framework to implement efficient and coordinated care that meets people’s needs and addresses economic challenges.

Georgina Carr, Chief Executive of The Neurological Alliance, said:

“Despite affecting millions of people and costing billions of pounds, too often people affected by neurological conditions are unable to access the services and support necessary to meet their needs.

“With over 19,000 people and more than 100 organisations, we continue to call on UK Government to work together to establish a Neuro Taskforce. The Taskforce would provide the framework to address these challenges and transform services and support for the 1 in 6 people with a neurological condition. Most importantly, it would show that Government are finally listening to the 1 in 6 living with a neurological condition.”

Learn more about the parliamentary launch of the report and the action we are taking here.

Notes to editors

References

1. The Economist Impact Unit. The value of action: mitigating the impact of neurological disorders in the United Kingdom Findings report. https://impact.economist.com/perspectives/health/value-action-mitigating-impact-neurological-disorders-united-kingdom Feb 2024.

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Access the pathways here.

The pathways set out what good treatment, care and support looks like. This includes treatment and support for people who may be experiencing the first symptoms of a neurological condition, right through to people who have lived with a condition for a long time.

Setting out good care, supporting commissioning

The new optimal clinical pathways in epilepsy, neurological autoimmune diseases, neurogenetics and rehabilitation are part of a suite of optimal clinical pathways. They set out what good care looks like and support the commissioning of quality services for people with neurological conditions, locally and nationally.

 Other optimal clinical pathways in the suite include:

• functional neurological disorder
• headache and facial pain
• movement disorders
• traumatic brain injury
• motor neurone disease

Access the pathways here.

Pathways for multiple sclerosis, neuromuscular conditions, mental health in neurological conditions and transition from children’s to adult services are also in development.

The suite of optimal care pathways have been developed by the neurological community, with the support of NHS England and the National Neurosciences Advisory Group (NNAG).  NNAG stopped meeting at the beginning of 2023.

The optimal clinical pathways were developed by clinicians including neurologists, and people affected by neurological conditions, and supported by the Association of British Neurologists (ABN) and patient groups.

What next

These optimal clinical pathways are being published at a critical time, as Integrated Care Boards (ICBs) are preparing for their new responsibilities as commissioners of many neuroscience services.

The pathways can be used to improve local services to meet the needs of the population and deliver efficiency savings across the system.

The pathways allow clinical directors, service managers, local commissioners, the voluntary sector, people affected by neurological conditions and  anyone with an interest in improving services to assess the availability of key services in their area and identify gaps in provision.

The pathways are designed to support local services to develop plans to address gaps in provision for people affected by neurological conditions, improve care, and support everyone to access the right treatment and care at the right time.

We are urging NHS England, commissioners and providers to use these pathways, and we will be promoting them throughout the year.

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