This latest blog will share some of my experience of supporting and facilitating the development of patient leadership in mental health through the South Essex Recovery College. It is an important story to be told about amazing people doing some great work. The patient leaders happen to have used secondary mental health services themselves but that’s not the story. It’s a more generic story about recovery, courage, hope and overcoming the dumb, stupid, uninterested and those who stand in the way of needed change. Yes I’m afraid my experience even at the top was that some of the senior people in the NHS and Local Government think they need to be in charge of recovery themselves and patients need professionals all the time.
I will provide a small part of the narrative here BUT it’s NOT MY STORY. It’s their story that I share with their permission as they develop their work. If I claim anything here it is that I saw a great group of people who wanted to change a bit of their world. I was keen to travel with them and open some doors hosting them for a while. I had a chance to do all of that and of course upset some power by supporting the idea that patients should lead this themselves without highly graded NHS project managers to supervise them. My reflections are tinged with a sense of sadness that I couldn’t stay to be part of the recovery college further development.
My bit of the story starts a few years ago when I joined my last Trust Board and I was approached by one of our Trust patient governors, a researcher at the University, one of our psychiatrists and a senior social worker. Quite a dynamic quartet of strong advocates for change! They plied me with tea and biscuits and pleaded for me to take an interest in their work on recovery. They expressed frustration that although they had been part of a national programme of work which had birthed many Recovery Colleges their work had not progressed very well. I listened, I offered to host one meeting of the steering group and discuss it with my CEO.
A Recovery College comes out of the concept of recovering your health but not necessarily completely to a previous state. Though many with mental health problems do recover completely others don’t so the focus is to recover your life and your control. No longer a victim but someone who is reflective, who has the ability to plan and build a life beyond illness. Someone who is not settling for the stigma or discrimination of accepting less.
So off we went and I began to facilitate as we held meetings which lots and lots of patients attended as did front line staff. We asked at each meeting for a PLEDGE. Asking people to think about what skills they can bring to the setting up of the college? Suggesting you can offer yourself even if it’s just making the tea and we will sign you up as a trust volunteer. We had tea makers, policy writers, web designers, graphic designers. People told their recovery stories and these were inspiring moving and challenging. This gave us a list of 40 or more volunteers and the trust volunteer office were fabulous getting people cleared to volunteer and trained. All we had spent at that stage was money on tea and biscuits and expense to attend meetings. The energy and agency in the room was amazing as I hosted these events.
Soon the leaders in the group emerged and they quickly co facilitated events with me. My role switched to mentoring in the background and opening doors by facilitating links with trust departments. So I got communications, volunteering, the CEO and his office, governance and operations on board very quickly. We spoke to those in power inside and outside the organisation and with a number of great local user led organisations to get support, minimise challenge and ensure we were not derailed, a few times we came close.
We set up a good old project structure as here I have a few technical skills. I chaired the project board and reported to Executive Team colleagues and Trust Board. Our recovery meets became the BIG recovery meets as so many people were now involved. We got the University to support us and we bid successfully for some service development/research funds. Because we deliver the ARUs post graduate priorities of research to improve health and well being, innovative education and user led.
So we developed our PID project initiation document, sent key patient leaders and staff off to St Georges to be trained at their Recovery College and got on with recruiting and thinking about course locations and design. And just before I left the trust in February we recruited the project lead on an NHS agenda for change contract (no small feat). Somebody with excellent project and technical skills for the job, welcomed and supported by people with lived experience because he is also a person with lived experience of mental illness himself. And in June they run their first course called BE YOU.
I’m so pleased and proud beyond words to have travelled with them for a while as I gained so much and learnt so much because here the boss is no leader the patient is and it’s as it should be.
So I will end with further thoughts on recovery, the Equality Act and mental health discrimination. This follows the media reporting around Megan Cox and Emirate Airlines decision to withdraw their job offer to her. I don’t know Megan’s medical history, I like most of you know her story as it is presented by her in the media. But, I do know if Emirates were based in our country and subject to the Equality Act then they would need as an employer to prove they have not discriminated against Megan. In the Act there are 4 ways she could have been discriminated against here with her mental health history. Is it direct discrimination stopping her employment? (Because she had a mental illness). Is it discrimination by association as she is well now but had an illness? Or is it perception discrimination worried about the risks someone with mental illness might pose on a flight? Or could it be indirect discrimination because someone else in Emirates air crew has had mental health problems and the organisation has not got the systems and support in place to deal effectively with staff with this condition.I know for a fact based on averages 1 in 4 of Emirates air crew will be today or have in the past suffered mental illness. Are they being supported and treated? Or are they hiding it for fear of a potentially discriminatory employer? Would I rather fly Emirates or fly with Megan if that’s the case? I’m with Megan here and I hope her career takes off with a much better employer.
Meanwhile perhaps the UK based airlines could think about up signing up as an organisation to
As finally said so brilliantly by Margaret Wheatley in 2010 and paraphrased here:
“Leadership rests on the illusion that someone can be in control. …. we need to abandon our reliance on the leader as hero and invite in the leader as host…….these leaders as hosts are candid…..they don’t know what to do…..its sheer foolishness to rely only on themselves for answers. But, they also know they can trust in other people’s creativity and commitment to get the work done. They know that other people, no matter where they are in the organisational hierarchy, can be motivated, diligent and creative as the leader, given the right invitation.”
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