Suicide survivor Steve Gilbert describes how plans around the new Mental Health Act stand to benefit people of colour.
December 2018 is set to go down as a momentous month in British history, with parliamentarians voting next week on whether to accept a deal on leaving the European Union provisionally agreed by the Prime Minister. The publication of recommended changes to the Mental Health Act was brought forward a week, to avoid a clash. This was to give another piece of history the best chance of being realised.
Theresa May's government progressed two of its recommendations to the beginning of the legislative process within hours of receiving them. She had vowed to improve responses to mental health challenges at the very start of her premiership. The journey towards a choice and trust based crisis care system has now started, and can be resumed and finalised in law when the dust settles on the December 11 Brexit poll. Whatever happens in politics through this winter, we now have certainty that things will progress on mental health legislation within months, rather than years.
The Mental Health Act is something that many of us don't need to think about day-to-day. But any one of us could need to one day - and we all want to be able to trust in services, to feel we will be protected if and when that's what we need. Steve Gilbert has amplified this collective voice within his role in the independent review this past year. He has been the figurehead representing a tapestry of patients who have been through mental health hospitals; also the figureheard reflecting a range of perspectives from the African and Caribbean community specifically.
We meet on Wednesday, the day a year's work is finally distilled and shared with the press and other media. It is an emotional day. A profound sense of responsibility and opportunity has been carried all year. It is a day of release and optimism.
'It's not difficult to talk about race'
The British media remains shamefully lacking in diversity. There are no black journalists at the press conference launching the report. Only two out of around 30 questions address the inequality of outcomes for BAME and particularly black African Caribbean patients: four times more likely to be sectioned; longer-detentions than those for non-black patients - there is an endless list of statistics in truth.
Steve fields one question on this topic and references the "lack of support in the community". Community means a variety of things in mental health conversations and Mental Health Today wonders how this is heard by today's audience. He's not making a comment on austerity. He's talking about BAME communities not being served or responded to in culturally appropriate ways.
One of the primary ideas of the recommendations is for service providers and commissioners to be required to demonstrate how they've performed their pre-existing legal duty to serve all of the communities in their region. Racial discrimination exists in mental health care. This plays out through skewed risk assessments and narrow cultural insights. It has been even worse, and that is why we now have Seni's Law requiring police to wear cameras in mental health settings.
One reporter invites Steve to call out racism in the NHS. I imagine he has been prompted to do this most weeks this year. He sees discrimination and the form it takes. He would rather focus on building something though. Unlike the majority of journalist he'll encounter this month, he comes from a community that "needs change" - not a headline.
"It’s a challenge to find the right balance in terms of what is deliberate and not deliberate [discrimination]," he tells Mental Health Today later, at the start of an hour-long conversation in the now deserted auditorium at the Royal Society of Medicine. "You can [choose to] say that an organisation is just flat-out ignorant, is part of a community that has very high levels of ethnic minorities and that therefore they should really know how to serve - and when they are not addressing the needs of the community you could argue that there is a case for taking punitive action against that organisation. Or you can balance that against being more compassionate and saying, they simply just don’t know what to do. It's not difficult to talk about race - but it's that that's quite difficult to balance. And then so is thinking about what’s required for progress."
Earlier this year, BAME campaigner Patrick Vernon told Mental Health Today, "if we get the law right for black people, we get it right for everyone." The government hasagreed to implement two recommendations that it feels will get things right for everyone, and in turn address the "burning injustice" of BAME over-representation in compulsory detention. Is that approach the same thing or a different thing? (For those who haven't heard, the two immediate changes relate to being legally protected to shape/challenge your treatment, and to nominate which relative can advocate for you when you are too ill to communicate.)
Patrick will be publicly sharing his reaction to the Mental Health Act shake-up at a workshop event in Brixton tonight. Suman Fernando, a BAME author (and former psychiatrist), Tweeted today the government have "kept race off the agenda" by only implementing two recommendations, arguing the "hostile environment" is alive and well.
"Does calling something out, in and of itself, lead to progress, or do you need to do something else," Steve had earlier told Mental Health Today. "Do you need to try to understand what the behaviours are? What the challenges are? And that’s not about letting people off the hook. If you’re the Chief Exec of a Mental Health Trust you have legal obligations and moral obligations to do better by the communities you serve."
"From the point of view of the black community, in the back of our mind, going to hospital is potentially somewhere where you’re going to be over-medicated, where you’re going to be in for a very long time and actually, you might lose your life."
"Even though the clinician or the person you’re talking to may have the best of intentions, if you’re from the black community, it’s safe to say you may have that in your head. You may have that in your head based not just on the collective memory of the black community, but also your own experiences if you’ve had poor experiences or poor interaction."
Steve told us he hoped that implementation of a quarter of the independent review's recommendations would be taken up by the government. Many of the point do not call for legislative changes. Rather, they relate to providing a vision where services are shaped by their communities through adopting what the review team have called a "competency framework".
"We’re starting off with mental health providers, developing something that is already in development within the NHS called the patient-carer race equality framework. That would relate to not only in-patient but also community settings. A really key element of that, is patients and carers from that community being included from the outset in developing those services. Some of these are certainly not quick wins but they would result in services that are more appropriate and would better address the needs of ethnic communities."
A total ban on police cells is mentioned in the review recommendations because "if you’re black and you’re in contact with the police during a mental health service, there have been too many occasion when things have gone badly in police custody." That's actually been legislated for recently also, and now needs to be more comprehensively adhered to.
"There were still 400 police detentions last year. So it’s important that police cells are not deemed a place of safety, but rather a S136 located within a mental health site."
We also discuss some of the practical day-to-day fears that accompany (or surface following) detention. How will this record on my medical notes affect my travel insurance; my driving licence; my life insurance...
Advocacy, choice and service development
Attention turns to mental health advocacy now, through securing funding in the pre-Christmas NHS long-term plan for an opt-out advocacy system bolstered by a larger supply of advocates from diverse backgrounds. "Sometimes the subtleties around needs and social norms… if you look through service documents you’ll see things around eye contact but actually that might not be the default for someone from that community."
"Having someone advocate for you that understands you is really important and that helps you to have your views heard. And not just heard, the thing that we’re putting in place through Advance Choice Documents ensure your views are recorded and then a clinician having to say why, if they have not followed that, why not. That’s important for everybody but some of these things are particularly important for ethnic minorities."
"These recommendations in effect create a pathway to show an organisation what it needs to do in order to improve and develop services that specifically serve your community."
"It’s not about this generic kind of idea of what a black person is or needs. The needs of the black community in Sussex may be very different to the needs of the black community in Manchester. It wasn’t our job to create the framework but it was our job to think about what it contained."
"As part of the Equality Act there is the public sector equality duty which is around the obligations which are on our public services. It’s really about helping them achieve that, pay 'due regard' to that. The framework helps them work towards that."
"People might be expecting us to say 'training, training, training'. Actually training can make you really aware of something but not give you the skills to do things differently. A lot of these skills, staff already have, but it’s about how we use them for ethnic minority groups."
"There’s a growing understanding that talking therapy is so important. It might not be just that you want to see a black therapist. What this is about long-term is a more rounded approach to therapy in this country rather than one that’s very, very Euro-centric, one that has more latitude. Just as how for some people talking therapy is right or arts therapy is right, actually having more difference in the way we deliver talking therapies is so important too... At an individual level this is an agreement between the metnal health trust and the community. So this isn’t a one-size fits all."
The vision delivered by the Independent Review Team is transformative and has been broadly, though not universally, saluted as outlining a destination of where we should be; where we should actually already be. Steve paid tribute to everyone involved in what has been a modern, consultative review, already recognised as a model for future legislative analysis.
"I'm genuinely very emotional about it and it goes off to the wide world now. What I’d like is for people to take responsibility for it. Find the thing that you really believe in and let’s get behind that."
"I can’t speak highly enough of everyone involved, but particularly the service users and carers. For every single response we’ve had, that’s a person who was going into their experience and analysing it to try to find an answer that helps with this review. That’s what we need to respect. All the people who came along to the workshops, everyone who came to the focus groups, everybody that emailed, everybody that engaged on social media – that is someone’s experiences. Everybody on the review panel has been really moved by those experiences, everyone has been respectful of those experiences. It gives this a level of credibility far beyond anything I’ve ever been involved in before."