Part two: “We will never find a cure for mental illness – but we won’t stop trying”
In part two of our interview David Crepaz-Keay, Head of Empowerment and Social Inclusion at the Mental Health Foundation, shares what motivates him as both a service user and mental health opinion former, the value of Recovery Colleges in supported recovery and how his work is informing care improvement.
What do you feel has been the accomplishment you are most proud of?
The work that I have done around peer support and self-management in general. Leading the development of an intervention that has made a significant improvement to people’s lives is an amazing feeling.
As someone who has lived with a diagnosis, and often been told that schizophrenics don’t have anything valuable to offer society, having an opportunity to demonstrate the opposite, is indescribable. Being able to show people like me that they don’t have to live the life of a mental patient, matters most to me. I’m fortunate enough to be able to fulfill my potential. Not all do – in fact very few get the opportunity to. I’m driven by the fact that every day thousands of people receive a life changing mental health diagnosis, and for a lot of them, those life changes are not good. I want to see a world where getting a diagnosis isn’t a life sentence. A world where you can live with, and live well with a mental health condition.
“Every day thousands of people receive a life changing mental health diagnosis, and for a lot of them, those life changes are not good. I want to see a world where getting a diagnosis isn’t a life sentence. A world where you can live with, and live well with a mental health condition.”
What are your long term hopes for the peer and self-management initiative?
Well, it is early days for us. It has taken a while for us to develop and evaluate an effective model that works.
While we aren’t yet working in statutory services – to date our projects have mainly been implemented in community settings, we are working with a number of organisations to develop programmes in clinical environments.
Now we at the stage commissioners should be commissioning it, and delivering it.
That’s what we want to see next. The research side has been great, allowing us to understand who it is working best for. There is plenty more work to do, but we are confident it could be rolled out more widely in the future.
Are you aware of any changes in care practices that have come about as a result of your research and support programmes?
Our work in Wales has directly contributed to peer support and self-management becoming part of the Welsh NHS mental health strategy. We’ve worked closely with the government to embed practice there and facilitate service user and carer forums. The fifty participants involved have become a direct voice for mental health patients in Wales and influencing service provision in the region.
How do you think your work to improve understanding of self-management and peer support in mental health can be used more broadly, to improve NHS and statutory services?
I think if mental health services are to become more sustainable it’s essential.
Historically we used to have services on which people were 100% dependent. For people to function at their best, they have to be good at working with and alongside other people.
From being contained within a system, to moving on through community care, to encouraging people to look after themselves, our key word is inter-dependence.
“From being contained within a system, to moving on through community care, to encouraging people to look after themselves, our key word is inter-dependence.”
A key life goal for most people is independence, but we are all part of a complicated interdependent community, so the goal to be completely self-sufficient doesn’t reflect reality. From family life, through to train drivers, to coffee shop baristas, to be successful in any area we need to know how to work with and support others.
Independence is a natural human instinct. A stepping stone towards being able to contribute and support others, and also, to be supported by them. But it should not be the entire goal, interdependence should be.
We will never find a cure for mental illness – but we won’t stop trying. In the meantime we want to support people to improve their lives by managing their own conditions better.
My father has diabetes, a condition we have made huge steps forward in, mainly because of self-management. As a child, I remember his condition being managed for him. Every six months consultants would make adjustments to his treatment plan, based on their observations and recommendations. These days, people – including my Dad, manage their condition independently on a daily basis. They take their own bloods, make lifestyle adjustments, create an exercise regime, monitor and administer their own medication.
They still need, and see consultants, but mostly to monitor long term effects of their condition, not their day to day lifestyle. Having this control makes a massive difference to their quality of life and this is what we are trying to achieve in mental health.
“We will never find a cure for mental illness – but we won’t stop trying. In the meantime we want to support people to improve their lives by managing their own conditions better.”
Supported recovery is as much a part of mental health care as hospital admissions, what role do you think Recovery Colleges can play in the success of the care process?
They should be the bridge between community and secondary specialist services. We are not so good at managing mental health in those transition periods.
When something in life drives you mad, you end up in hospital. But once there, no one in the hospital is dealing with the issue that put you there. They are treating symptoms, not root problems. So when you leave you hospital and go back to the life you had, the problems are still there, and you end up in the same situation.
If nothing is done to break the cycle, the chances are history will be repeated, and mental health readmissions go through the roof.
Recovery Colleges can massively help that transition process, supporting people to have the skills and abilities needed to build life resilience and learn to cope with the life they lead.
What are your project goals for the next 12 months?
My big challenge is doing more to engage men in their mental health. Evidence supports what I’m about to say – so I can say it, a lot of men are known to be poor at health seeking and are not into talking about things.
When people get really badly affected by mental ill health, the worst case scenario is suicide, and men of working age are the group most at risk of this.
The first step, is always the hardest and in this case that’s trying to break the long term culture of silence. It is about people leading by example, and getting more men talking about how mental health issues affect them. The role of the workplace is really important in this as are opinion formers, like sporting role models. Men you perhaps wouldn’t expect to discuss their mental health, but they are.
If you compare the public profile of breast and prostate cancer, you wouldn’t believe that the incidence is almost identical. The main reason being, that one affects women and the other men. Women are more used to talking about health, men need to learn from that. The classic stereotype is that English men do not talk, it’s not the done thing. That needs to change. There has been some fantastic work around prostate cancer in recent years, and that’s basically what we want to do for mental health.
What inspires you?
It’s what people can achieve when they get it right. I’ve seen people do amazing things when they work collectively. People who could easily just accept the cards they are dealt and behave like a stereotype. People who get on, and do all the things they “can’t” or “should not do. I thrive on discrediting preconceptions and challenging how those people are treated. Mental health has a huge amount to learn from the broader disability movement e.g. ParaOlympics. Those inspiring role models that challenge the status quo are needed in mental health.
“I’ve seen people do amazing things when they work collectively. People who could easily just accept the cards they are dealt and behave like a stereotype. People who get on, and do all the things they “can’t” or “should not do. I thrive on discrediting preconceptions and challenging how those people are treated. Mental health has a huge amount to learn from the broader disability movement e.g. ParaOlympics.”
I actually think it is important to acknowledge and understand that we are progressing. Patient experience means something now, it didn’t 20 years ago. In the 1980s there really were no patient experience related organisations like Picker.
The 1990 Health & Community Care Act enshrined this idea of patient involvement, and was a landmark step forward. Prior to that it was thought of as a very difficult subject. There is still stigma, it’s a subject that has to be discussed regardless now and we are getting much better at talking about it.
MHF and the like, worked to change how people thought about mental health service users, and to get more mental health services provided in community settings. Patient experience itself just was not a thing, but it’s a huge thing now. That is important. It’s not all doom and gloom.