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In the letter signed by charities including the Huntington's Disease Association, the Neurological Alliance, Epilepsy Action, The Migraine Trust, The Brain Charity, Motor Neurone Disease Association and many more. We have asked for:
By joining forces we are united in our fight for improved access to mental health services for people affected by a neurological condition.
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,