Mental Health Awareness Week 2023
by Alice Struthers, Programme Director, Neurological Alliance of Scotland
This Mental Health Awareness Week (15 – 21 May 2023) we want to focus on everyone who lives with a neurological condition, many of whom struggle with their mental health.
There are an estimated 600 neurological conditions, many of which are rare and difficult to diagnose. Some, like multiple sclerosis, epilepsy and ME are fluctuating, so people live with a sense of not knowing when they might have a relapse or have a seizure, or if they are in a relapse, when they might start to feel better. Some neurological conditions are life-long, like cerebral palsy, spina bifida and muscular dystrophy, all of which cause disabilities that also have a huge impact on families and care givers. Some, like dementia, Motor Neurone Disease and Parkinson’s are degenerative and rob the person of their independence, mobility and mental cognition over time.
Despite the differences in how these neurological conditions present, they all impact the brain, spine and/or the nervous system. Many cause problems with muscles, balance, co-ordination and strength as well as brain fog and fatigue. We know that people with neurological conditions often report being perceived as having a drug or alcohol problem, which adds to the sense of isolation.
Everyone with a neurological condition faces unique challenges - but the uncertainty of living with a long term and unpredictable health condition often causes anxiety. And this can make physical symptoms even worse. For many people, this spiral of distress and despair can seem never-ending.
Another common thread with neurological conditions, is that all too often there is no treatment available. Where this happens, people must ‘learn to live’ with their condition, and access rehab services if they can fight their way through the system (or pay for it privately, if that is an option).
For conditions that have treatment, like epilepsy, medication to control seizures can have side effects which can affect mood and mental wellbeing.
So, it is understandable that the mental wellbeing of anyone with a neurological condition should be a priority for care givers, the NHS and government policy.
And yet, 67% of adults surveyed for the Patient Experience Survey 2021/2 reported that their mental wellbeing needs were not being met at all, or to a small extent only. For some reason, despite the clear pressures that impact someone with a neurological condition, only 45% of adult respondents to our survey said they had been asked about their mental wellbeing by a health or social care professional in the last three years. Why are these conversations not happening?
It is likely because neurological conditions are extremely complex, and we don’t yet have effective ways of managing them. Our NHS is underfunded, neurologists and mental health staff are in short supply and the social care system is collapsing. We need a new approach to supporting people living with a neurological condition to support their mental health.
This Mental Health Awareness Week, we want to encourage anyone with an unaddressed mental health issue to ask for help – to start those difficult conversations and to get onto the pathway to accessing support. We want to encourage everyone to reach out to friends, family and colleagues with a neurological condition, to start a conversation about how they are coping.
And for anyone with a known mental health issue, know that you are not alone - our member charities have wonderful resources to help you navigate your way through the complexity of living with your condition. Please do reach out, or ask a friend or family member to reach out to one of our charities on your behalf.
Neurological charities can do so many practical things to take the pressure off you, from helping with applying for benefits to loaning equipment to help with your disability – as well as wellbeing support where there is capacity.
It is certainly difficult for everyone with a neurological condition to access psychologists, mental health nurses or emotional support via the NHS. But our member charities, along with Scotland's carers centres, offer a range of practical and wellbeing support that can help make things easier in difficult times.