It’s World Mental Health Day on October 10th 2018.

Mental Health is an issue extremely close to my heart. Like the 1 in 4 people in the UK will at some point in their lives, I have had my own mental health experiences and difficulties, although fortunately I have been able to access services that enable me to lead a 'normal' and fulfilled life. But for many people with learning disabilities who experience mental health problems, this is not the case. According to the Foundation for People with Learning Disabilities, between 25% and 40% of people with learning disabilities experience mental health problems; higher than the national average for those who do not have learning disabilities. This is a huge proportion. Yet many of this 25% - 40% are not accessing the vital mental health services available who could support people to improve their mental health. Often, those people with learning disabilities who have mental health problems are misdiagnosed as a characteristic of their learning disability. This gross error undoubtedly leads to further anguish and the continued development of an individual’s mental health issues.

People with learning disabilities have a higher rate of associated health conditions than those who do not have learning disabilities. In fact, they are about 2.5 times more likely to have physical health problems, which generally receive more accurate diagnosis and treatment. We need to reach a parity of support between physical health and mental health services for people with learning disabilities. (Source - http://disability-studies.leeds.ac.uk-Health-FI-main.pdf )

Simultaneously, many people with learning disabilities who have been diagnosed with mental health problems have not had their diagnosis reviewed for long periods of time. Whilst many people with learning disabilities have access to annual health reviews, mental health check-ups are often excluded from this assessment. This leads to an exclusion of re-assessment (as well as initial assessment). One of the consequences of this can be unnecessary long-term medication use. For example, there have been countless incidents of people being prescribed anti-psychotic drugs for years without the medication being re-assessed, and without exploring other options for treatment such as positive behaviour support. NHS England described this as “over-medicating” after a report that was published in July 2017 estimated that nearly “35,000 people with learning disabilities are being prescribed strong anti-psychotic medication without justification” (Source: http://www.theguardian.com/social-care-network/2015/jul/21/learning-disabilities-medication-pbs ). Too often has medication been the safety net for what is deemed to be ‘challenging behaviour’.

So, what needs to happen?

Most importantly, organisations need to sign up to the STOMP initiative (Stopping the Over-Medication of People with Learning Disabilities, Autism, or both). The STOMP initiative aims to stop the over-use of psychotropic medication which has been prescribed in order to manage someone’s behaviour. Walsingham Support are currently signed up and have created an action plan to support the reduction in over-medication.

Mental health checks need to be included as part of an individual’s annual health check, at the very least. The same level of focus needs to be paid to mental health as physical health. With anywhere between 25%-40% experiencing mental health problems, this is an omission of care on a huge level. Medication used for mental health problems need to be regularly reviewed to ensure that individuals are not prescribed these long term leading to dependency, if it is not necessary. Whilst GPs may generally review medication once a year, some over-medicate when an individual’s behaviour is seen to be ‘challenging’ by others, or when it is assumed that an individual with a learning disability cannot partake in cognitive behavioural therapy.

Mental health services and learning disability services need to communicate and work together to provide holistic support to an individual. The roles and responsibilities of mental health and learning disability professionals needs to be clearly defined. Mental health services are legally required to make reasonable adjustments for people with learning disabilities, to enable them to access the services they need.

Services need to ensure that the support given is personalised, beginning with the assessment, through to specialist interventions and treatment, and ending with regular reviews. They should also ensure that they work with individuals and their circle of support so that care and treatment is person-centred.

We need to reach a point in time when people with learning disabilities are able to receive the same level of personalised support that I was able to receive in my time of need, in order to achieve their potential and live a fulfilled life.

Dominique Richards Personalisation Office