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Awareness is just the start

By tonydavid, on 9 October 2020

World Mental Health Day 2020 poster by Mental Health Foundation

World Mental Health Day 2020 poster by Mental Health Foundation

The 10th October 2020 is World Mental Health Day. This marking of the calendar was launched in 1992 by the World Health Organisation and has become well established. The UK Charity, the Mental Health Foundation proposed a regular awareness week (occurring in May – 18th to 24th this year), back in 2001. Time to Talk day was 6th February 2020, following Blue Monday – 20th January – spuriously claimed to be the most depressing day of the year. In fact, there are mental health days or weeks for fathers, mothers, men and women in general, children (3rd– 9th Feb) and many more – helpfully gathered on the website: therapyforyou.co.uk/post/mental-health-calendar.

It would be easy – and wrong – to be cynical about all this. Wrong because awareness should be the first step towards understanding – for those who are ignorant or unduly frightened by mental illness. Greater awareness in the minds of politicians, philanthropists and scientists should lead to more research and better funding for services. Above all, greater awareness should replace prejudice and stigma with realistic appreciation and empathy. However, as with many anti-stigma initiatives, this can have unintended consequences (watch my talk on this for last year’s World Mental Health Day). In the case of awareness days and weeks – it can lead to complacency and apathy. A better response is to try and propel the agenda forward from awareness to deeper understanding and most important of all, action.

One undeniably positive consequence of greater awareness is the empowerment of people with lived experience of mental health problems to not only tell their stories in their own words but also to become an essential part of “the solution”. I put that in inverted commas to indicate clearly that there is certainly no simple or single solution to mental illness or disorder but that research – from basic science to clinical care to public policy – is the driver towards such an ideal.

The UCL Institute of Mental Health (IoMH) is lucky to have on its advisory board a number of highly qualified and motivated  individuals who are able to use their experience of being patients (let’s not say ‘users’) and carers within the psychiatric care system. Here Jackie Hardy and Jason Grant share some thoughts prompted by World Mental Health day.

Nothing about us, without us

I have welcomed being involved in the IoMH and some mental health research with UCL looking at COVID19 and its impact on people’s mental health during this exceptional period in history. The research really has tried to involve Lived Experience Researchers in all pieces of the work, which I have so welcomed. It will be good when some of the papers around this come out.

Being involved has meant I have felt part of something and can share my lived experience in helping to shape things.

Right now we live in uncertain times and I feel mental health services are due an overhaul and have been for a long time. Despite statutory services asking people with lived experience of mental distress, and carers, their views, the same medical model still seems to exist. I would like to see the social model of disability embraced, along with a model of peer support, designed and delivered by people with lived experience of mental distress. Unless you have been there you really cannot know what it is like. The right model of peer support has the person leading their discovery journey – I prefer this term, as ‘recovery’ is pressure; so many of us discover a lot about ourselves, but may never truly recover, as it can be very up and down, as life has its events.

Mental health services should be holistic, looking at the whole person and their whole life and be ‘person centred’. We are all unique individuals, so please do not try to put a square peg in a round hole. Such support needs to be joined up with health professionals and our support network (if we have one, if not ask peers if they can help link the person in to a support network).

If peer support can be person centred, why cannot statutory services? If you do not know how, then please, please talk to us – “nothing about us, without us”, is a term regularly used.

One place to start is NSUN https://www.nsun.org.uk/ – they are: “a network of people and groups living in England who have and do experience mental distress and want to change things for the better.” They can help with research, decide on what should be researched by reaching out to their network of people. I would like to see more lived experience researchers, along with us receiving funding, leading in research and on papers. We can work and learn together.

Change is long overdue, so this is my personal plea for a change.

Jackie Hardy

From Patient to Peer-Support Worker

In the summer of 2015, I had a psychotic episode whilst travelling in Brazil and ended up walking around for three days without sleeping. As I had no insight at the time, I thought that it was just a bad experience and thought nothing more of it. I even went travelling again in Europe a month later where I experienced another psychotic episode. This time I was taken to a psychiatric hospital in Prague and my family had to come and get me out of the country.

I still wasn’t entirely sure what was happening and resolved to not go travelling again for a while. Unfortunately for me, I had another psychotic episode and ended on a section 136 (brought into hospital as an emergency) in Eastbourne Hospital. After being admitted onto the ward for a couple of days, I was then transferred to Meadowfield in Worthing. At this point, I finally realised that it was my mental health that was causing me all of the problems that I was facing and I was determined to do something about it.

I made sure that my time in hospital was spent doing as many activities as possible, from mindfulness, art classes, playing basketball and badminton, walking around the grounds, and even making paper birds using origami.

I was discharged after 10 days into the care of the Crisis Team who referred me to the Early Intervention Service.

I had support for a couple of months then was transferred to Glasgow services as I decided to go back to university. When I returned to Sussex, my care continued for just over three years. During that time, I was able to receive support from a care co-ordinator, participated in various research studies, attended groups and meetings within the Trust, and managed to gain insight around my signs, symptoms, what to do in a crisis and how to manage my condition.

Just to clarify, psychosis is a condition which affects the mind. It changes the way you think, feel, and behave. Some may lose sense of reality and fall into their imagination. Psychosis can occur when drug misuse is an issue and as a reaction to extreme stress or trauma. Psychosis can happen to anyone and like any other illness, it can be treated.

In March of 2020, I interviewed for the position of peer support worker within the same Early Intervention Service that I went through and was successful in securing the role. It took a little while to finally get into post, due to the pandemic and remote working, but I have been working part time since August.

For those that don’t know, Early Intervention is a community-based service for people aged up to 65 years old who are experiencing their first episode of psychosis. The idea is to help people have a positive first experience of mental health services, to reduce symptoms and support recovery, to support the family/carers and involve them as much as possible, and to use evidence-based treatments for psychosis.

The team consists of doctors, nurses, social workers, occupational therapists, psychologists, pharmacists, and peer support workers (of which I am the first in the team). My role is to provide an element of hope based on my recovery, resilience, and self-determination. I will also be able to help others navigate the service and signpost people to other peer activities within the Trust like working-together groups, recovery college, and people participation.

Jason Grant

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