“If you apply lived experience as lived expertise, it can be used to improve mental health care.”
As Head of Empowerment and Social Inclusion at the Mental Health Foundation and a long term service user himself, David Crepaz-Keay, leads on all the organisation’s service user empowerment and self-management related work. We sat down with him to find out more about how he works to embed self-management as a tool for mental health service improvement, the role peer support and “lived experience” play in the quality of the patient experience and why we need to take more risks in healthcare:
What is your role at the Mental Health Foundation (MHF)?
I am the Head of Empowerment and Social Inclusion at the organisation. My original focus was on service user and carer involvement in mental health services. Over time the organisation has become much bigger, and is now involved in all areas of care provision. My role is to build on the experiences of people who have used mental health services and harness them to improve care and wellbeing across the UK population.
So, to an extent, you view service users as experts by experience?
A lot is said about service users being experts by experience. At MHF we take the view that experience doesn’t, in itself, constitute expertise, but there are certain steps along the way that can. If you harness lived experience and apply it as lived expertise, it can be used to both improve care and make the county’s mental health better in general.
How did you come to be a part of Mental Health Foundation
Before I was on staff, I was an active service user. Back in the 80’s the Mental Health Foundation funded “survivors speak out”, a national organisation run by and for people who had used mental health services. I was one of them, and through my involvement in an MHF funded organisation, I was able to sit on steering groups for them, and gradually got involved in more and more. Eventually, they were looking for someone to lead service user and carer involvement. That was 12 years ago and I am still delighted to have got that role.
Describe a typical day in your working life?
There is almost never a typical day.
Some days I might go to an organisation and run staff outreach activities and all-staff presentations. Other times, I use MHF’s expertise to shape and influence other people’s work. Currently I am supporting a number of academic research projects supporting universities to make sure their research is informed and influenced by service user and carer expertise.
MHF are keen to promote the importance of good mental health and the role wellbeing plays in that, and I’m due to speak at a seminar on personal wellbeing. Quality wellbeing is not evenly distributed across society, or easily accessible to all. Some groups find it easier to achieve than others. If you are unemployed and socially isolated it is harder to achieve quality wellbeing than someone with more stimulation and social connections.
From your experience as a service user and your work to date, what would you say are the most prevalent and urgent issues in mental health care today?
I think discrimination is still an important one, that and its link to wellbeing.
Understanding the disadvantage experienced by people with a psychiatric diagnosis starts and ends with discrimination. Mental health patients are known to have a shorter life expectancy, but diminished mental health isn’t actually what kills people, it’s the relationship to physical health and wellbeing. Without treatment, symptoms can impact people’s ability to work and understand dietary boundaries. In extreme cases leading to poverty, poor diet, malnutrition, excessive drinking etc.
Whether you have a clinical diagnosis or not, your wellbeing is key to mental health. An individual can be completely free of psychiatric symptoms but still experience poor mental health when their wellbeing is fragile. And on the reverse side, even without clinical diagnosis, someone can improve their mental health by nurturing their wellbeing.
Having a purpose can improve your health and wellbeing – that is broadly known. But some groups are less likely to do those things – including those with mental health issues. Giving those people the same chances in life as others should be a priority.
“That means the best quality health care and access to an education. So they are as likely to be, and have as many opportunities to be in work as possible.”
Do you have any thoughts on the best way to ensure these opportunities?
People who use mental health services are seen as being or having a problem that other people can treat. Our view is people can do more to help and treat themselves and each other. Self-management and peer support seem to be effective in improving people’s wellbeing, as with challenging discrimination.
If you think about it, for a long time our workforce was predominantly men and huge parts of society, (women) were denied the opportunity to work. In 2016 while sexism is being tackled, society still seems to think disabled people, including those who experience mental ill-health and those with learning disabilities are not capable of doing the same roles as others. A misguided and costly misconception. At present we are an untapped resource society is not using effectively. It’s not just about providing clinical treatment for mental health problems. It is about taking an asset based approach and encouraging people to see the mentally ill – myself included, as having something to offer. Rather than seeing them simply as a problem that needs to be solved.
Why do you think peer support and self-management are so important to effective healthcare provision and service user recovery?
It’s about building support networks, and learning to manage the day to day stresses of life outside of hospital treatment.
One of the key issues for us is making people aware that even those in work can be affected by mental ill health. As part of our outreach work in this area, we often work with companies to create a more mental health aware workplace environment. This includes seminars and staff workshops that encourage dialogue and organisational development, building resilience within organisations.
On the whole, having a job is good for your mental health. Granted it has its stresses, but broadly speaking the workplace is an important part of people’s lives, and stress can affect your ability to manage your mental health. A supportive company can be the difference between people managing challenging circumstances and not doing so.
What do you see as the key pillars of effective self-management / What tools do service users need to self-manage their care and conditions?
The approach we take is very much about goal setting and problem solving. We’ve found many of the people we work with do not understand setting and working towards concrete goals. Particularly those who experience low self-esteem or crisis at key developmental stages.
For example, everyone knows your teenage years play an integral part in your personal development. They are a crucial and often painful time when you learn social skills, transition to adulthood and learn the importance of setting goals and achieving milestones. If mental health affects you during formative periods of your life, you won’t develop them fully.
“As a teenager, I was diagnosed with schizophrenia amongst other mental health conditions. At a time when your average individual is developing key social and developmental skills, I was dealing with a completely different set of problems. When that happens, you can lose confidence and withdraw, no longer thinking about setting these important goals.”
As a charity, the Mental Health Foundation tries to facilitate that action for them, getting people to relearn those goal setting and decision making skills.
Mental health services don’t tend to proactively encourage people to set these goals – particularly the more risk averse. We know that involvement is an essential component of person centred care. For example, a clinician knows that if followed, their recommendations will lead to positive results and support their professional reputation. However, allowing self-management of care isn’t always successful and can lead to reputational damage for the doctor involved. I appreciate it’s a leap of faith not all professionals are willing to take – even if it’s needed. If you behave in a risk averse way, you are less likely to be criticised – no one gets in trouble playing it safe.
The key to success is acknowledging no two individual’s goals are the same. We ask them “how do you want your life to be?” and support them to set their own goals around whatever those aspirations are.
Where does peer support fit into this model?
The challenge we have is getting people to be more ambitious, Having your achievements acknowledged by others makes you feel good.
Like weight loss, you are much more likely to achieve a goal, if you articulate it, or involve others. It’s what makes Weight Watchers, Slimming World and even Alcoholics Anonymous so successful – great examples of peer support and goal setting.
By inspiring others with their story and encouraging them to achieve their own goals, peer support can help someone channel their experience and turn it into expertise. Some of our projects are with single parents used to working as a one man team. In our workshops you see examples of them supporting each other in ways they couldn’t do alone.
2015 Community Mental Health Survey found lack of service user involvement to be a key barrier to the delivery of effective person centred care, *with more than two in every five respondents stating that they were not involved as much as they wanted to be in agreeing their care or in general care discussions. What do you think could be done to make mental healthcare more person centred?
I find it baffling that it isn’t. If you think about how much patient experience data is collected and available, we have a good understanding of what needs to happen, but are not doing it. Not taking the next steps, and applying this knowledge, is a baffling waste of time.
Sometimes in life we do things as a force of habit, rather than through evidence. It is one of the key things holding us back in healthcare. As I mentioned earlier about risk averse cultures, there is a degree of trepidation about giving service users back control of their life. Clinicians are worried what might happen if they aren’t completely in the driving seat of treatment.
Not all risks are bad though. Reasonable risk taking is essential in many areas and in this instance, needed. We are holding back people’s lives and it is having a massive impact on how people live and learn- or do not learn, to apply their day to day decision making.
The only way to prevent the cycle from continuing is to move away from the blame culture e.g. whistleblowing etc. No matter how well intended or thought through, things will always go wrong at some point, but that doesn’t need to ruin someone’s career. We need to start thinking about encouraging and rewarding positive practice innovation. Applauding services for reasonable risk taking, and being prepared to try something new. If things go wrong we learn from it, and celebrate when they go right.
In part two of our interview David 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.