Lived Experience Practitioners: The Most Valuable Resource the the NHS Isn’t Using?

Users of mental health services shaping their organisation and delivery.  It’s a bit of a mad suggestion isn’t it?  It’s like asking the passengers to fly the plane.  Like asking the prisoners to run the prison or maybe like asking the kids to govern the school.  Health services are staffed by experts and what possible value could there be in letting a patient have a say in what goes on?  We didn’t spend all that time getting our training for some uppity service user to come along and act like they know better.  That we label ‘grandiosity’.  Problem is the people who have actually tasted what we are selling know a great deal.

Keir is a Lead Therapist in an NHS Specialist Service and provides training, consultation and therapy around complex mental health problems through beamconsultancy.co.uk

One of the best sources of information is a randomised controlled trial.  Here we have something a tad less substantial – the bitter ramblings of a middle-aged welshman.  I’m going to take you through my history of working with lived experience practitioners and some thoughts about whether they should be a part of future mental health services.  

My first contact was with Lucy (@smile4wales).  A therapeutic community was being set up and when I joined the team Lucy was already there as the service user consultant.  I remember saying hello, dunking a biscuit in my tea and watching in horror as it dropped onto my shirt.  This set the tone for much of our working relationship…

I’d never worked with service users without offering them treatment before (not knowingly anyway, although having said that many of the NHS staff I come across would be diagnosable in another setting) and it was a bit weird to be in a team and in theory, equal.  It helped that Lucy and I were the least experienced members of the team and we were able to bond over “not knowing what the hell we were doing”.  One of the ideas around having a service user consultant in the Therapeutic Community was that it helped people engage in the group.  The Service User Consultant bridged the gap between the members and the staff.  What rarely got talked about was how it worked the other way too.  While something had obviously made people ask me to work in the TC, I was still very much in the Us/Them camp, with some fairly stigmatising ideas around people diagnosed with personality disorder that I’d picked up over the years.  Working in the TC with Lucy made it impossible to maintain that split and those views.  She became a colleague who supported me.  She validated me when I was frustrated and defended me when others were critical.  On the other side, she disagreed with me when she thought I was wrong, she voted against me when the group considered issues and she challenged me when I needed it.  Because she became a real person in my life and because I knew she shared a diagnosis with the people in the group the way I saw them changed.  The way I saw others in the whole service changed.  I would not be the practitioner I am today (for better or worse) without those years of working alongside Lucy.  We shared some painful experiences and we celebrated winning awards.  It was great that we became friends, and awful to see the organisation around her casually exploit her (who doesn’t want to wait 3 months to be paid your less than minimum wage income?).

Alongside her effect on me, thee was the magic that Lucy brought into the group.  Because she ‘had lived it’, she could challenge the members in ways the staff couldn’t.  Because she had lived it, she could validate in ways the staff couldn’t.  No member or visitor ever left without emphasising the impact that Lucy had on them and the group.  She had the skill and insight to use her experience in to help both staff and members respond in ways that were more helpful.  

Fast forward a few years and I found myself doing a masters degree in ‘personality disorder’.  The set up of the course meant that it was put together and taught in partnership with people with lived experience.  Again, this meant the course touched on areas that most wouldn’t, but also that the debates and teamwork came with heavy doses of a lived experience perspective.  These are easy to ignore when then they arrive in a complaining email.  They hit home a lot harder when delivered by your lecturers and peers.  

Around the same time as the MSc I started doing KUF awareness training.  This is a 3 day course that attempts to shift peoples views of ‘personality disorder’, moving away from a fixed diagnosis and looking more at how we see ‘the past in the present’, often how experiences of neglect and abuse have led to current difficulties.  One of the novelties of the KUF training is that it is always delivered by a lived experience trainer and professional trainer.  I’ve probably done over 100 days of this training but one day I wandered into a room in Cardiff where a Brummie woman was setting up a computer.  Hollie @hoppypelican delivered the training in a way that kept people amused and engaged.  She used her experience when it highlighted important issues and resonated with the material.  We did a few more sessions and I met her again at the British and Irish Group for the Study of Personality Disorder conference a year later.  I was on my own but Hollie and her clan looked after me during what could have been a fairly isolated experience.  We kept in touch and Hollie is my go to person for delivering training, thinking through issues and getting a second opinion.  I’ve worked with her to engage people that services had written off and to argue the case for reducing restriction.  The lived experience perspective when delivered in a way that can be heard moves people far more than my accounts of facts, figures and research.  Hollie does this exceptionally well and it’s great that I get to work with someone that I’ve become very close friends with.  

Problem is, not everyone has had my experience of working with LXPs.  (Brace yourselves everyone, this is the controversial bit).  I think what is often forgotten is that Lived Experience is not enough.  There is definitely a place for user involvement, there is definitely a place for getting a wide range of views but it is a fact that if you’re so angry you can only shout at people, no one will hear you and your views will be pathologised.  One of the clinicians I respect most in the world used to argue passionately against user involvement based on their experience of being in meeting with a service user rep with an axe to grind.  Yes we need to hear peoples anger.  Yes we need to give forums for anger to be expressed, but the role of the Lived Experience Practitioner goes beyond that.  It is not just telling your story, regardless of how people voyeuristically want to hear it. 

In my experience, a good LXP will have:

Experience of a range of mental health services

Experience of care delivered voluntarily and under compulsion

Thats like the core training but it isn’t enough.  To excel as an LXP:

In the same way that a clinician applies models, the LXP uses their experience to explain, inform and solve issues.

They express their views in ways that can be heard

They validate the views of others before challenging them

They recognise the complexity of the work 

They are in tune with their feelings and can express them in ways that are helpful

They can put up with a lot of shit and articulate it so it can be addressed.  

If you have people like this working in your organisation they will engage people who are hard to reach, they will stop staff enacting myths and stigma, they will ensure that service users are thought about, they will notice when staff are burning out, they will focus on the patients best interest and challenge defensive practice, they will tell you things you hadn’t considered and they will rub away much of the Us/Them dynamic in the service.  Hollie and Lucy are the best exemplars of all the above and I know there are others like them out there.  I am a better practitioner because of my work with LXPs and I don’t think we can do anything that would reduce stigma quicker than employing more of them. 

In an NHS that seems determined to incarcerate people hundreds of miles away if there’s a chance they could be blamed if something risky happens, we need people who can hold the patients interests at heart and make organisations listen.  After years of tokenistic user involvement lets make sure that the voice of lived experience influences all the decisions in our organisations.  We’ve been deaf to it long enough. 

I could not have written the above without many and varied influences of Hollie, Lucy, Becky, Jake, Sal, Jane, Tamar, Tania, Zoe, Sue, Jen, Mel, Tori, Julia, Kath, Lou, Cameron & Andy.   Please don’t ever judge the value of your input by what the NHS is prepared to pay you.

Keir is a Lead Therapist in an NHS Specialist Service and provides training, consultation and therapy around complex mental health problems through beamconsultancy.co.uk

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s