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.
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 Shift.ms
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.