The moment had finally come to make our way to Portcullis House. Some of the security staff had swapped over, so there was still some novelty about a Mermicorn-haired person strolling in. We made our way though security... and my big bag set the alarm off. Yup, those pink pliers were finally picked up. I started explaining why the hell I had a set of pink crafting pliers to a highly bemused security guard. He obviously didn't feel that they passed much of a risk to anyone as he didn't confiscate them.
We announced our arrival to reception and sat down in the waiting area, watching as various people entered to collect their visitors. Most of the time they had a slightly blank look on their face as I'm guessing for the most part they were fetching people they were meeting for the first time. I noticed that Mel was creased up laughing. Apparently one man had appeared, looking rather lost as he struggled to locate his visitors. He saw a couple of us and started making his way towards us with a big smile on his face. Then he spotted my Mermicorn haired self sat by Mel, realised we were together, and thought... no.... these are not my people. Apparently the smile disappeared pretty sharpish, promptly replaced by Mel's laughter.
After a while a blond haired man appeared who seemed younger than most of the others we had seen. He looked a bit friendlier than the last guy who had approached us - and asked we were here to see Norman. We finally got to enter the hallowed restricted area, complete with trees, leather covered benches and the subsidised coffee kiosks we'd been eyeballing earlier before we realised they weren't going to happen and headed to the pub instead. No cheap coffee on leather seats though, we were whisked through to the far end where we made our way to the office that Norman was meeting us in. It was set up theatre style, so between the six of us, we decided to arrange a circle for us to sit in. It was a really symbolic touch - all of us had previously had links with Emergence CIC, and delivering training with groups in circles, conversing on an equal footing between facilitators and students, was a big part of what we did. The circle felt so right.
Norman entered the room and apologised for a mix up which had meant that our arrival hadn't initially been announced, which meant we would have 45mins to meet. He started the introductions and then handed over to me to carry on. I felt like a deer in the headlights for the first few minutes, and then something clicked and I went with the agenda I'd written the night before.
I started with our purpose for meeting:
To explore whether legislation could be developed to ensure that public funds allocated to develop Public & Patient Involvement (PPI) are jointly or solely controlled by the groups they are intended for.
We then set the scene to explain the current issues:
1. PPI funds are being majority controlled by generic (non lived experience) decision makers
Norman wanted to check what we were referring to in terms of PPI funding, so I explained that we were talking about the overall range of public funding allocated to service user involvement/engagement in mental health, to include NHS, research and third sector funds. Our issue was that the decision making of how money was spent was being controlled by a vast majority of organisations that were not lived experience led, by people in generic posts, rather than people in Lived Experience Practitioner roles. They were not sharing this decision making with the mental health community by employing up within decisin making posts or working on a partnership basis with organisations that were led by us.
2. User-led organisations are becoming extinct
I highlighted that 150 User-Led Organisations who had been members of National Service User Network (NSUN) had closed in the last year. I mentioned that we had prepared an information pack which gave more information on this, and Dr. Sarah Carr, who is the acting chair of NSUN, was able to provide more information about this.
3. PPI funding for research is disproportionately allocated to generic researchers/ organisations vs. Service User Researchers & User-Led Organisations
Sarah tackled this question, and was able to refer to some of the research she had done with Professor Peter Beresford and Professor Diana Rose for their co-authored paper highlighting that service user researchers rarely made decisions about what was researched and how it was researched, and were rarely given control of funding. As such they had very little power in deciding the research agenda and being able to build an evidence base that would provide insight into areas of practice that people with mental health conditions wanted to be prioritised.
4. Generic organisations are not employing LXPs beyond entry level posts
We gave some of our own case studies of this. I briefly gave my own experience of dropping two pay bands to work in the NHS and in seven years being unable to progress and use my taxpayer funded qualification because of my LXP status.
Hollie then gave the example of dropping four pay bands after working nationally as a trainer with a service user-led organisation to work as a Peer Support Worker within the NHS. She described the impact of the work, which had not implemented a supportive structure, adequate supervision, or prepared the team to work with Peer Support Workers. This, combined with her experience of discrimination had led to her becoming unwell and having time off sick. Hollie had worked for years as a Lived Experience Practitioner for a service user led organisation delivering staff training and never had a mental health relapse. The stress of working within the NHS post had led to the first of several admissions to hospital. Her sickness levels led to a disciplinary procedure being triggered. Tired of fighting, feeling humiliated and ashamed, she resigned.
Hollie's experience is one that has haunted me for a long time. I have not described it in a way that adequately does it the justice that Hollie could and it is her story to tell, so I would encourage you to read this yourself in her blog. She gave a talk in 2018 at BIGSPD which is where I first heard the talk and came away feeling sick having heard it, as I had not been aware of the full extent of the issues at the time. I felt shame and guilt for not being able to support her - although I couldn't have realistically done this. However, one area I do feel guilty about is that prior to the development of the PSW posts I flagged up the need for support, supervision and team preparation to the person in charge of developing the strategy for this. I was ignored and not allowed to join the steering group developing this. I decided to not pursue this as it wasn't an area I was responsible for, and it was already draining me having to fight for the area I worked in. I told myself it wasn't my circus or my monkeys. The guilt I feel is that for once I didn't fight, and I later saw someone I care about become hurt. Part of having that experience is what adds to what I joke about as being sheer bloody minded or stubborn. The driving force is actually closer to caring deeply about not seeing others hurt, or a burning desire to fight inequality and discrimination. The burning desire isn't about the fight, its about preventing the hurt.
One thing we didn't have time to cover in our meeting with Norman was what happened after Hollie left. Myself and Hollie had initially met with commissioners and alongside service users presented co-produced ideas (based on research and case studies) about avoiding out of area placements for people with complex mental health needs. This proposal had fallen on deaf ears and none of the ideas had been actioned. After Hollie left, she was able to take some of these ideas and develop them in a freelance capacity for work with Beam Consulting. A co-produced way of working has been welcomed by commissioners working in other areas and Hollie now works as a Band 8 Service Lead elsewhere. The learning here is that when Hollie was working within environments which provided adequate support within their structure, she worked to a high level and did not relapse. The combination of not being adequately valued or supported was what had led to her relapse, not any individual fault on her part.
Valuing and supporting us in the way we tell you is needed will help us much more than half baked schemes getting us 'back into work' like the recent idea to provide us with 'mental health coaches'. If you haven't first prepared the organisations and teams we work with to accept us, work with us as equals and be flexible within their systems - the most skilled and talented mental health coach out there would not be able to compensate for the gaps in the foundation.
5. LXPs who work freelance are vulnerable to exploitation
One way of circumnavigating the red tape of NHS organisations is to employ LXPs on a freelance basis. This model is used in some areas and in theory should be a good option to do this. However, freelance workers do not have the same rights as employees and are vulnerable to exploitation. The current barriers to LXPs to control their own funding means that there are very few opportunities for them to work strategically, with more highly skilled LXPs available than there are posts for them. Whilst the posts exist, they are instead reserved for generic role, which would mean a move away from their discipline.
We provided a case study of an LXP who had worked as an employee within an NHS team. She had been employed in a Band 6 post through a service user led organisation. The organisation closed, after succumbing to austerity cuts. The NHS team realised the value of the work that was being done, and after a period of time renegotiated her returning on a freelance basis. The level of work was banded at a Band 7b role. The team were happy with the work completed, as they had been prior to her rehire on a freelance basis. Towards the end of her contract, they appointed a new Service Lead. The Service Lead happened to be the LXP's previous therapist. Despite the LXP having completed therapy and not yet completed her freelance contract, the decision was made for her not to return to her prior place of work due to her former therapist working there. When her former therapist applied for the post, they knew that their previous client currently worked there on a freelance basis. Having no employee rights, she could not appeal the decision, despite having worked with the team for several years. Her post had been one of very few specialist LXP posts in the country at a senior banding. Service Leads posts are commonplace in all NHS Trusts. However, the LXP post was sacrificed in order to make way for a clinician who could have applied for a post in any number of nearby Trusts.
Norman asked if we had any examples of LXPs being employed effectively within NHS Trusts. We think he may have done his own homework, because we had Mel on hand, prepped to provide her case study of working within an organisation as a Peer Lead, developing adequately banded posts, support and supervision for Peer workers, which has recently been featured in the Guardian.
Norman asked about another NHS trust which has achieved an outstanding rating recently. Whilst we knew of the Trust, it does not as far as we were aware employ LXP senior posts, although it states that it welcomes lived experience from all staff. Whilst this should be the case for all staff, we stated that LXPs were a discipline which necessitated the use of this directly within a role, which was not true of other disciplines, many of which use models that actively discourage any form of self discloure and maintain a distinct barrier between service user and clinician. Mel mentioned that one of the issues with the current barrier to career progression is that we are losing some very talented people to either generic/admin posts or retraining to work within other disciplines. This means that we lose talent and our discipline is struggling to grow, develop, and offer a real additional choice to service users, because a handful of people trained beyond entry level posts cannot sustain this.
I have since speculated that Norman may have understood this before we responded, as he referred to the role of LXPs as culture change and breaking down 'othering' and barriers between 'us' and 'them'. Whilst this may not sound like rocket science, it is in actual fact a concept that a lot of people cannot grasp, and often takes a long time for people to process and understand this in practice. Culture change is slow and the reflection and mentalizing needed to recognise this and 'see' it is not something that can be taught on a powerpoint slide. Yet Norman just slipped it in as though it was common knowledge. It really isn't. I should know, I've been trying to communicate this for seven years, using various tactics to educate or influence. I've tried subtle and I've tried wrecking ball. I've tried various areas inbetween. How the hell do we clone people who 'get it' and get them into decision making posts???
^^^***Oh yeah.... that is what we are currently fighting to do....!!!***^^^
6. There is no protective and/or professional development body that LXPs can currently join
We briefly mentioned the need for this, and that the barrier of starting one being that LXPs were not currently paid enough to afford professional subscription fees. It is a chicken and egg scenario. We need something to set standards and rights for us, but in order to do that need to have the equal pay of our colleagues to pay the membership fees to fund this. The background information to this included some of the research myself, Mel Ball and Fiona Stirling had done in understanding LXP issues, as well as the idea we proposed of an LXP professional body in 2018.
Our Proposal:
We decided to aim high with what we wanted
Legislation or conditions applied to all public spending on PPI to ensure that these are at least equally controlled by the groups they are intended for. Funding would be allocated user led organisations or initiatives, or to organisations who employ LXPs at decision making levels or partner with user-led organisations.
Prioritisastion/ Positive action taken to divert some PPI funds toward developing a body to support and protect Lived Experience Practitioners
Understand the scale of the issue: FOI Request to all NHS Trusts & main recipients of PPI funding (ie Mental Health charities, research organisations) requesting:
Total spend on PPI
Percentage of this used to fund staff salaries
Breakdown of spend on generic & LXP posts.
Details of LXP posts: Banding and salaries
So, how did Sir Norman Lamb respond...?
After hitting Norman with our proposal, we were interested in his take on things. He was obviously knowledgeable in his understanding of this area. However, the thing that had struck me most was the way he responded to hearing the snippets of experiences of discrimination we had faced. He did appear genuinely apalled, beyond lip service or placating words.
The good thing is that he was honest. The present political shitshow - with uncertainty and Brexshit going down - is not one where any legislation changes will be made in a hurry, even if they have been proposed by five self-proclaimed #Mad people including a Pink Pliers Wielding Mermicorn rocking up to Parliament. That one will have to just go into the #ToDo later pile. I am certain that at some point, equality legislation will have to catch up to #MentalHealth, and when it does, we will be there to cheer it on.
Norman was supportive, and has offered to write letters to relevant Ministers in charge of health. Sadly in this precarious climate we all acknowledged that people in cabinet posts were subject to change within the near future. He also suggested writing a letter to the Director of #NHSEngland. He has encouraged us to keep liaising with him and his research team. We left extra packs containing the evidence base we had gathered to support the case studies we gave, alongside a copy of our proposal.
We won't be smashing through legislation like a wrecking ball, but that ball has now started rolling and we are excited to see where it may lead, and what ripple effects it will have.
Watch this space....
#Mad #Activism #Lobbying #Westminster #MentalHealth #PostPersonalityPioneers #LivedExperiencePractitioners #SirNormanLamb #LegislationChange
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