Creating a greater understanding

Eric likes to keep busy. He plays Scrabble twice a week, along with chess, dominoes, and badminton to keep fit, and he also has a 20-year-old son who has just finished university that he enjoys spending time with.

His life is full and his outlook positive. And yet Eric has lived with a severe mental health condition for more than 30 years.

At 16, he was diagnosed with schizophrenia.

“I went into the Royal Edinburgh Hospital and I was put in an adults’ ward because I had an old head on young shoulders – or so I was told! I fitted in pretty well, although it was pretty traumatic for seven weeks. I came out and I stayed on medication for about two and a half years. And for about 18 months I stayed in bed and slept for about 21 hours a day. The rest of the time I just lay there. I didn’t really realise at the time but, looking back on it, it was pretty awful,” he recalls.

The following years were punctuated by disruptive periods of ill-health. However, Eric is matter-of-fact about his experiences.

“It’s just the course of my life. The hard times are hard but the older I got, the hard times became easier in that I had been through it before and knew what to do.”

His diagnosis was later amended to schizoaffective disorder – a mental disorder characterised by psychosis and mood disorder. He says it is “disappointing” when, after an extended period of feeling well, he starts to notice the tell-tale signs. Over time, however, he has learned to manage his condition and stresses that those who experience severe mental ill-health can, with the right support and treatment, lead full and active lives.

“I’ve got a consultant psychiatrist and a GP and I can pick up the phone and make an appointment at the drop of a hat and I’ll be listened to. They’ve got files – thick, thick files to look back on. So it’s OK. I try not to use them unless I have to. I try to sort it out myself first if I can. But if I can’t, then I call for help. My medication keeps the voices and hallucinations away – I’ve not hallucinated audibly or visually in two years. I just try and be careful. The tendency could be to overdo things as you get on a crest of a wave and get higher and higher. So although I like to keep busy, I do have to be careful that I don’t overdo it because then you come down with a clatter.”

Last year he joined the board of Support in Mind Scotland, a charity that works to improve the wellbeing and quality of life of people affected by serious mental illness. He had been involved as a volunteer with some of its services but says he wanted to do more, and thought it would help to have another service user’s perspective on the board.

 Education and employment are two issues that Eric is particularly keen to progress. During a period of good health he returned to further education to study history – a favourite subject from his school days – and made various ventures into the world of employment, including as an office manager and a gardener. However, at the age of 25, after another period of ill-health, Eric’s GP informed him that he no longer needed to work.

“That hurt. It was quite demoralising. And for a long time after that I went round in circles looking for help. I would go to employment agencies, get knocked back. I would go to the job centre and they would look at my medical history and say there is not much hope.”

Eric valued his short experiences of education and employment, and wishes they could have lasted longer.

“I think there is a lot of wasted potential among people with mental health problems in employment and education. I’ve always felt that I missed out and would’ve liked to do more.”

More flexibility in education, greater understanding amongst employers, and further efforts to tackle stigma would be an important start, he says. He expresses his frustration at persistent, negative media stereotypes about conditions such as his, pointing out that he has “never been violent in my life”.

“I know a lot of other people who are in the mental health system who are not violent. They are more likely to do themselves some damage than do someone else some damage, and it is usually through neglect because they cannot look after themselves and they are not being looked after.”

Stigma is one of the biggest dangers those with a severe mental health condition face, explains Frances Simpson, chief executive, Support in Mind.

"What happens is the people who are affected are afraid to come forward, so even though families tell us that they were aware of their relative’s behaviour being unusual, strange, worrying or frightening from really quite a young age, it is not diagnosed and they aren’t getting treatment until the first episode of psychosis in late teens and twenties... It is stigma that stops families coming forward. It is stigma that stops people asking for help.”

Early intervention can make an important difference. One per cent of the population will have a diagnosis of schizophrenia at some point in their lives, with 80 per cent aged between 16-30 on first diagnosis. While 20 per cent will recover within five years, 65 per cent will have fluctuating problems for decades.

Last year, an independent commission in England that had been established to review how outcomes for people with schizophrenia and psychosis could be improved called for a “radical overhaul” of the current system of care. While it focused on experiences south of the border, Simpson points out that many of the findings outlined in the commission’s ‘Abandoned Illness’ report could also apply to Scotland. For example, it points out that people with conditions such as schizophrenia still die 15-20 years earlier than other citizens, and impresses the importance of combating defeatist attitudes and raising awareness that substantial recovery is achievable for most people. On a practical level, it also recommends greater partnership and shared decision making with service users, improved training and awareness for practitioners, and better access to psychological therapies like CBT.

As a follow on to this work, Support in Mind has begun inviting key experts to look more closely at the situation in Scotland. The panel will hold its first meeting later this month and will be tasked with considering what practical policies could be taken forward. Furthermore, Simpson says the organisation has also been working with a research team from the University of Central Lancashire to examine carers’ experiences of forensic services, which assess and treat people with major behavioural, mental health problems and learning disabilities in a range of secure health facilities and the community. The study is due to be completed in October and Simpson hopes some good practice examples will emerge from it.

“If you can imagine, supporting someone with severe mental illness is difficult enough because you are dealing with mental health law, you are dealing with tribunals, you are dealing with psychiatrists and all sorts of people that most of us don’t have any contact with. You have to learn a lot very quickly,” Simpson explains.

“Well, in forensic services there is that added dimension of criminal justice services. You are also in a very regulated environment, very restricted, and families and carers can feel even more excluded. They don’t know what is going on, they don’t know what their rights are. They are given very little information and can feel that they are just part of a system. And yet they are the people who know the most about the person who is in that system.”

She is also eager for the organisation to engage in the next phase of the ‘see me’, anti-stigma campaign. Last month the Scottish Government announced a joint investment with Comic Relief of £4.5m to tackle stigma and discrimination in Scotland. The three-year programme will be launched at the beginning of November and will be delivered in partnership by the Scottish Association for Mental Health (SAMH) and the Mental Health Foundation (MHF).

Isabella Goldie, head of Scotland, MHF, says ‘see me’ has been “world leading” in raising awareness of mental health problems. However, she adds that the focus now is to move from awareness-raising to sustainable behaviour change. The next phase will seek to take what has been learned about what works nationally and embed it locally, and so, Goldie says they will be working with communities to support them to develop change networks. Crucially, she says the programme will also ensure that those with lived experience are at the heart of its anti-stigma work, and as such, they will be seeking to connect more widely with those who have had experience of mental ill-health, but may not describe themselves as a service user.

“I think the big story with this is we do want to connect much more with people who have a lived experience. And really, for us, this next stage is a bit of a rallying call,” she says.
“We are using the term ‘social movement’, and it is true enough because really what we want to do now in this next stage is get to the point where employers, schools, healthcare professionals, housing, welfare representatives, all see this as being their business. So it is a programme of connecting people together.”

Simpson says ‘see me’ “created a framework and a context in which it was OK to talk about mental health”, and so reasons that it is “understandable” that it didn’t have a greater focus on severe mental health conditions early on. However, ten years on and with this important groundwork in place, she believes the environment is now right for it to push the boundaries and work to dispel myths around conditions such as schizophrenia.

They are people who can recover. They are people who, with the right interventions and support early on, can live full lives like everybody else,” she says.

“But it has to be about encouraging people to come forward early and ask for help. Because that is what the evidence tells us. The evidence tells us that intervening early and putting that intensive support in at an early stage leads to dramatic improvements in outcomes for individuals, and potential economic savings to the country as well.”