Yesterday I blogged about all of the personal experiences I'd had, along with noticing those of others, that had motivated me to email Sir Norman Lamb to set up a meeting. Today I'm going to focus on the magic that happens when you combine forces with others too.
I received the email confirming we could meet just after I'd had a colossal mood crash. It was pretty bad, and I'd needed to get my meds adjusted. Just as the medication had kicked in, I'd been struck with the most evil tonsillitis bug I've had since childhood. I'm taking full on, white tonsils. Anyone who lives with a chronic mental health condition will know that as out mental health deteriorates, so does our physical health. I knew that I was burnt out, partly due to the additional recent effort over the last few months to campaign for #equality for #LivedExperiencePractitioners.
This is where delegation and support from others helps. I had sent a background email with links and papers to Norman's researchers, which I forwarded on to the individuals I had approached to attend the meeting with me. I had approached:
Professor Peter Beresford: Basically the Godfather of Lived Experience Practitioners. He has literally written the book(s) on including lived experience within service improvement, whilst openly using his own lived experience within his work. I hadn't met Peter, but we have spoken on the phone and we regularly interact on Twitter. Of particular interest to me was the fact that he was currently campaigning against the closure of service-user led organisations, alongside Shaping Our Lives and NSUN (National Service User Network). He could provide the knowledge and arguments from the service user led organisations perspective.
Dr. Sarah Carr: Sarah is a Researcher who works from an experiential lens, who has recently joined Birmingham University as a Senior Fellow in Mental Health Policy. She has published work critiquing the lack of funding for service user led research, with funds for Public & Patient Involvement in research instead being given to projects which are not led by service user researchers. Sarah is also the acting chair of the board for NSUN, which is also campaigning against the closure of user-led organisations. I had met Sarah once, but from Twitter interaction I could see that she also had a strong online presence and was vocal in critiquing and sharing areas of concern for LXPs.
Sue Sibbald: Sue is a Peer Specialist and freelance consultant who works within the NHS and had also previously worked with Norman Lamb on the Personality Disorder Consensus Statement, which was launched in Westminster. Knowing that Sue had previously worked with Norman, and that he would have an active point of reference of what a Lived Experience Practitioner is capable of doing at a strategic level, was the catalyst in me choosing to email him. Sue had always spoken highly of him and as her legacy of working with him had paved the way for the approach, it was a no-brainer to approach her too. Sue also has a strong online presence, and actively advocates for LXP equality in her Tweets.
Sheena Dean: Sheena is a freelance LXP consultant who works at a senior banding (7b) within NHS services, after being employed within a similar role by Emergence CIC prior to its closure. She does specialist work within Personality Disorder, including staff supervision and complex case formulations. She is also one of the founders of Post Personality Pioneers, a group I am part of, and facilitates the award-winning LXP supervision model we are developing. Sheena is also vocal in her campigning for LXP equality, and is in the process of setting up two LXP conferences within the next 6/7 months.
Melanie Ball: Melanie is a Peer Lead working within the NHS, who was recently featured in The Guardian. Mel is also a rare example of an LXP who is employed directly within the NHS at a senior banding (7). She previously worked with Emergence CIC, then Rethink, before moving on to her recent NHS post. Melanie is in the process of developing more senior posts for LXPs, as well as ensuring that Peer Support Workers within her Trust work at an appropriate banding and have adequate supervision. Mel has also worked on the Lived Experience Practitioners Research Study with myself and Fiona Stirling, which we presented at BIGSPD (British and Irish Group for the Study of Personality Disorder) in 2018. Mel is also active on social media in advocating for LXP equality.
Hollie Berrigan: Hollie is a freelance consultant who also works with Beam Consulting as a Lived Experience Lead (Band 8 equivalent). She currently works with service users with complex mental health issues to prevent out of area placements and teams to ensure that the necessary support to do this is in place. Hollie also delivers training, and previously worked with Emergence CIC and then the Institute of Mental Health as a National KUF Trainer. Hollie has an extremely strong online presence. She used to write a popular blog, and is known for her opinionated, hilarious and straight talking Tweets on Mental Health and LXP equality.
Norman's researcher was able to liaise with the seven of us to find a date that most of us could make. Once this was set, we decided to meet remotely using Zoom for a preparation meeting. By this point I was delirious, had lost my voice and was languishing in bed, so the trusty Sheena Dean took over to finalise a date and time to meet.
Only four of us could make the Zoom remote meeting. I Zoomed in from my bed and managed to croak my way through. The four of us that were able to meet all knew each other well - we were all members of the Post Personality Pioneers, had regular supervision together and had presented the supervision model we were developing at BIGSPD this year, where we were presented for an award. Between us we discussed how we would approach the meeting.
One of the difficulties was that from our knowledge of the service user community, we knew that it was disparate, fragmented and people often worked in isolation and had different viewpoints. We wanted to present an overview of themes that affected the people who work to change and develop services within the community - but there was often a tension between activists, people work in service user led organisations and those who worked on the 'inside' - within NHS, academic or third sector organisations but in LXP posts.
We felt it was important to try and present something that we could all agree on, and that would benefit the different factions within the movement. We didn't want a solution that excluded any group.
If we demanded all money was controlled by activists or service user led groups, this could lead to LXPs only working 'outside', and set back some of the work being achieved within large organisations. Part of us working openly within these organisations is challenging the 'us and them' culture, a visible reminder to our colleagues that we are humans too. It also works the other way - it helps us to see clinical staff as human, and understand the organisational pressures that can lead to stigma or bad practice. Working together helps to prevent this.
However, if we posed a solution that favoured LXPs working within generic organisations, there was the danger of service user led organisations becoming extinct - which is currently on the cards, thanks to the legacy of austerity. As Mel said, she views her work within the NHS as vital, but regards service user led organisations as her 'True North' that she can refer to, in order to check and keep her understanding of service user issues current. We needed as solution that was 'and + as well', not 'either/or'.
The common theme that united us all as LXPs working inside, outside or as activists was a lack of access to or control of the millions of pounds worth of Public & Patient Involvement funds that is set aside to 'involve' us. Grassroots activist groups struggle to get funding, Service User Led organisations struggle to get funding or equally partner on projects with generic organisations. LXPs working within generic organisations reach a concrete ceiling, where they are not employed within strategic or decision making posts. If there were legislation or conditions applied to funding to ensure that these had to be allocated either to service user led projects/organisations, or co-produced at a decision making level. We used the term co-production in its original usage, denoting power-sharing. We felt that this would be determined by generic organisations partnering with a user-led organisation or demonstrating that they employed LXPs to work at decision-making/strategic level within these projects.
As we prepared, we tried to keep in mind our three colleagues who could not be there, and I briefly outlined why I had asked each of them and the unique insight each had. Mel was able to structure the meeting into notes which she sent round after the meeting.
We had decided that we needed to provide a background of what the issue was, list our proposals to solve this, and then ask if Norman was willing to support us and what support or signposting could be provided.
After the meeting, we communicated via email and those who couldn't attend the prep meeting provided extra input. The good news was that we appeared to have pitched it right. Sue Sibbald was not going to be able to make the meeting with Norman, but she was abe to give us some insight into her previous work with him, which helped us to feel confident that he would be supportive and have a good understanding of the issues we were bringing. Peter Beresford was also unable to attend, but gave us links to his recent work on the subject and was extremely supportive of the work we were doing. Sarah Carr was also able to provide references and was happy that the general message was in line with the work she was doing, and that she was happy with the meeting prep.
I spent the week beforehand desperately trying to get over the bug I had - drinking my weight in honey & lemon/tea, scoffing painkillers and antibiotics like smarties. I wasnt quite right the day before but got checked out and assured that I was n longer contagious, so I wouldn't be a walking infection bomb if I went to Westminster the next day. It was the first day I felt up to doing much, so in the evening I took Mel's notes, crafted an agenda and wrote a background information document that included some of the references mentioned by Peter and Sarah, as well as ones I had collated. What started as just 'putting together an agenda' at 9pm became a five hour task that finished at 2am. I emailed over the pack to Norman's office and the rest of the collective, and prayed that I'd got the essence of everything into the pack.
The next day I got suited and booted, armed myself with pharmaceuticals and Strepsils, and headed onto the train, which became an office where I put the packs together into trademark pink folders. I'd brought the 'Post Personality Pioneers' rosette with me as I reckoned it would be good fr a photo opportunity... and good luck, if I'm honest. We had all worn them at BIGSPD and good memories were attached to them. I had a necklace I loved that needed repairing, so I had taken along my crafting kit to sort it out on the train. Finally I did the most important thing of all... started my make-up on the train and finished it in Euston toilets! It is amazing how when you paint on a face you just feel so much better. I was no longer the sick person of the last two weeks, I had my armour on and was ready to meet my fellow warriors.
We were all excited and anxious, texting and WhatsApping furiously. I'd kept them up to date with my train shenanigans, and Hollie pointed out that security may not look kindly on a bag full of pliers, even if they were pink. I am already a little infamous for carrying bags that contain the most random things possible... cue much 'extracting the urine' from everyone as they speculated on whether I would make it through the security check.
I was the first to arrive at Westminster. I was gutted to find there were no decent coffee shops to sit in, so I sat and did a bit of mindful meditating on the park wall outside the tube station. Mel arrived next, and we went to Portcullis House. I wasn't quite expecting the level of security there. It was like being at an airport. Scratch that, it was like going into a high security prison. Bag scanned, belts off, through a body scanner, search, then past two men with very large guns (even high secure prison doesn't have that).
I think I amused security. The unicorn hair caught everyone's eye. I suppose Theresa May et al don't really rock every colour of the rainbow in one unnatural coloured hairdo. When they asked me what was in my bag, I think I responded 'I don't know', which cracked Mel up. 'You can't say that when there are blokes with guns!' she laughed. I'd thought she was joking, until I got to the end and saw them. Fortunately the pliers somewhere deep inside my bag didn't set off any alarms.
We had planned to go in, sit, have a coffee and prepare for the meeting. Annoyingly, visitors can't go into the plush middle bit with seating, tables and coffee/food kiosks. It was a 'restricted area'. However, you can go up to the waiting area, which is upstairs, and basically a balcony with a glass barrier and seating, where you can peer down into the restricted area and go as green as the leather seats up there as you watch them sip (subsidised?) coffee. We decided that we didn't want to spend the next few hours doing that and braving the vending machine coffee, so decided to head out and sit in the nearby pub instead.
The pub was definitely the better choice, and we were soon joined by Sarah, Hollie and Sheena. I handed out the packs I'd put together and was relieved that everyone felt that they were representative of what we'd planned. We went through the agenda and decided who could best speak to each section, with me chairing the discussion. It was definitely a better choice than the waiting area in Portcullis, as we were able to calm our nerves and sit at a table with a beverage of our choice, which was much more preferable than sitting on benches facing a glass barrier with a vending machine coffee.
I have to say, my heart swelled up during that pre-meet. I looked round the table and saw colleagues who all work in different areas. Sarah had not met the others before. i wasn't the only person to have been struggling over the last couple of weeks - each of us had been battling various things, and yet we were all here, supporting each other and pulling together. I felt so proud of everyone. Then as, the time came to move back to Portcullis House for the actual meeting, I felt the nerves hit. This was an incredible opportunity for us all to bring an issue that was affecting a huge group of people - many of whom we would never meet - to a very high level. We only had an hour to get our points across. I didn't want to fuck up. There was only one take.
So... how did the meeting go? Did the pink pliers make it past security twice in a row? Tune in tomorrow for Part 3 (which is also blog 3 of my 7 day blogging challenge) to find out!!!
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