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Neuro Charities Team Up

10 October 2023

On World Mental Health Day, we have joined forces with over 50 UK charities to highlight how people affected by a neurological condition struggle to access mental health services. 

In a joint letter to the Secretary of State, we have asked for:

  • Reviewed eligibility criteria for NHS Mental Health Trusts

  • Specialist training and support for clinicians

  • More specialist mental health staff and services for people living with neurological conditions

Dear Secretary of State,

We are writing to you as representatives of charities supporting people affected by neurological conditions.

Ahead of World Mental Health Day we want to highlight the challenges people living with neurological conditions are facing in relation to their mental health.

This year’s theme is 'mental health is a universal human right.' However, this right is being denied to some because of the type of condition they live with. One in six people in the UK live with a neurological condition and mental health issues are common. In the Neurological Alliance Neurological Patient Experience Survey 2021 (My Neuro Survey), 81% of respondents said their neurological condition affected their mental wellbeing.

Despite this commonality, many are being denied access to mental health services and this is happening across the country. Even if a person with a neurological condition experiences common mental health issues - such as anxiety or depression - clinicians may not refer them for mental health services simply because of the nature of their illness and some who are referred are refused access.

In the same survey, 60% of respondents said their mental wellbeing had not been asked about by a health or social care professional within the last three years. In a recent survey of healthcare professionals, the Huntington’s Disease Association found that 60% of patients were denied access to mental health services because of having Huntington's disease.

Of those who were denied access to mental health services, over a quarter of respondents said this was because Huntington's disease is a neurological condition/organic brain disorder (28%). Over a fifth said it was because the disease is not seen as a condition with mental health symptoms (21%).

These findings align with those of the Neurological Alliance, where in their Neurological Patient Experience Survey 2021, 61% of respondents said they would have found counselling helpful, but it had not been offered as a treatment. Similarly, 62% would have found neuropsychiatry helpful but it had not been offered to them.

We are keen to ensure that this is stopped. Neurological conditions often have both physical and mental symptoms and limiting patient access to mental health services is worsening mental health. Those denied access to services are more likely to end up in crisis situations - such as emergency hospital admissions, being sectioned or are at increased risk of harm to themselves or others.

In the short term, the government and NHS England have a critical role to play in ensuring that people living with neurological conditions - as well as their carers and families - are eligible to access mental health services when mental health symptoms are present. This includes reviewing eligibility criteria for NHS Mental Health Trusts.

In the medium term, as there is a lack of understanding about how mental health symptoms affect people living with neurological conditions, NHS England should provide specialist training and support to clinicians.

In the long term, there should be more specialist mental health staff and services for people living with neurological conditions. There are centres of clinical excellence, such as The Barberry in Birmingham. These services could be used as models for driving up standards in mental health support across the country.

We look forward to hearing from you.

Yours sincerely,

Cath Stanley, CEO of the Huntington’s Disease Association

Georgina Carr, CEO of the Neurological Alliance

Sarah Cuthell, CEO of MyAware

Simon Bull, Chief Executive of CMTUK

Vanessa Martin, Chair of Children Tumour Trust

Victoria Wareham, Director of Operations and Development for Dystonia UK

Phil Lee, CEO of Epilepsy Action’s Chief Executive

Rebecca Middleton, Chief Executive and Founder of Hereditary Brain Aneurysm Support

David Martin, CEO of MS Trust

Karen Cockburn, Charity Director for Nerve Tumours UK

Helen Evans, CEO of Cavernoma Alliance UK

Kripen Dhrona, CEO of the British Polio Fellowship

Austin Willett, CEO of Different Strokes

Emma McNally, CEO of Tourettes Action

Dan Knowles, CEO of Brain Tumour Research

Rob Music, CEO of The Migraine Trust

Caroline Morrice, CEO of Gain Charity

Doctor Julian Spinks, Chair of RLS-UK

Debbie Abrams, Membership Secretary of RLS-UK

Sara Hunt, CEO of the Alex The Leukodystrophy Charity

Alexandra Holden, CEO of Overcoming MS

Julie Fountain, CEO of Matthew’s Friends Ketogenic Therapies Charity

Steve Webster, Founder and CEO of FND Dimensions

Andy Barrick, Deputy CEO of the Multiple System Atrophy Trust

Paul Spaven, Chair of Trustees of the Neuro Therapy Network

Vicky Burford, Chair of Trustees for PANS PANDAS UK

Pippa Sargent, CEO of The Brain Charity

Lesley Pope, Chair of The Independent Neurological Providers Alliance

Juliet Tizzard, Director of External Relations for Parkinson's UK

Dr Jenna Moffitt, Consultant Clinical Neuropsychologist for the British Psychological Society

Sue Millman, CEO of Ataxia UK

Nick Meade, Director of Policy of the Genetic Alliance

Alex Massey, Head of Campaigning, Policy and Public Affairs, Motor Neurone Disease Association

Adine Aonis, Chair of the Association of Chartered Physiotherapists in Neurology (ACPIN)

Marc Smith, CEO of the Brain and Spine Foundation

Claire Eldred, Director of Dravet Syndrome UK

Rebecca Packwood, CEO of PSPA

Chloe Hayward, Executive Director of UKABIF

George Pepper, CEO of

Helen Matthews, CEO of Cure Parkinson’s

Trudy Morgan, Chair and Founding member of Glut1 Deficiency UK

Shelly Williamson, Chair of IIH UK

Sophie Muir, Chair of Trustees, Timothy Syndrome Alliance

Clare Joy, Chair of CSF Leak Association

Tony Thornburn OBE, Chair of Behçet’s UK

Richard J Davenport DM FRCP Edin, Consultant Neurologist at NHS Lothian

Many of the centres in our network offer individual counselling services with a qualified therapist. Centres also provide peer support in the form of social groups and activities, where you can meet with others experiencing similar challenges and who understand what you are going through.

Visit our centre directory to search for support in your area > 

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