One of the joys of living with slightly different wiring to whatever is considered 'normal' is that I'm rather persistent if I can see that something is important. Yup, even if most other people can't see it...!!! I think I may have the nickname 'Tenacious T' in one organisation I work with. This is the start of a serious of blogs that will take you through how that quality of sheer bloody-mindedness took me from individual struggles to noticing the wider patterns of discrimination and banding together with some inspirational people to take this to Parliament offices. This blog will just give you the background of what motivated me to send the initial 'could we meet?' email to Sir Norman Lamb
I am one of many Lived Experience Practitioners who has a 'split personality' work-wise. I in a low-banded NHS post part-time, with no career prospects in my discipline, despite having completed a Department of Health & Ministry of Justice funded MSc that cost taxpayers over £40k. Whilst my clinician colleagues with the same qualification have gone on to lead service design and work at strategic banding posts (Band 8 and above), develop Mental Health services abroad and actively use the MSc in the way it was intended - to train leaders in our field, I've remained stuck within my NHS employment. However, within my freelance work, I am treated and respected as the consultant I am trained to be, working on equal terms with fellow trainers, researchers or delivering other consultancy. The disparity between the two is stark, and navigating the two working worlds
The reason why I'm not able to do this within the NHS? I'm a Lived Experience Practitioner - working in posts that include actively and openly using insight from living with a chronic mental health condition and use of services to inform the work I do. In other words, if you are audacious enough to openly work whilst mad... you will be actively kept in the place of the Mad 'other', because the boundaries between the presumed 'sane' staff and service users is sacred and must not be broken.
Whilst this may sound like a histrionic rant, it is based on my experience. I did not hold this opinion when I first moved to an NHS position from working as a Marketing professional and then into service user involvement as a Lived Experience Practitioner (LXP). I was confident that I was a professional, I had a degree and post-graduate qualifications. It would be no problem stepping into an organisation with 4000 staff and working a couple of bands below my usual work - I would use it as a stepping stone to progress. Seven years later, including a Masters of Science award in the discipline I work in - I'm stuck. No career prospects - or a way of using the publicly funded education within the services it was intended for. When I recently applied for a Band 8 post to strategically lead the development of the personality disorder pathway (basically what I'd spent the last five years training to do on the publicly funded MSc), my application could not even be considered because I was not a clinician registered with a professional body. I go beyond the CPD requirements of most professional bodies in terms of education and remaining up to date in my field, however, as an LXP, there is no professional body I can join. We don't have one! I'm guilty of working whilst openly mad, so that door is firmly shut. My only option to work at this level is to work privately delivering consultancy, and this is exactly what most LXPs who have completed the MSc have done. Whilst I do this on a part time basis, the bloody-minded, stubborn side has kept me within the NHS, determined to make a point that this needs to change.
We all know that the NHS is strapped for cash, has undergone brutal cuts due to austerity. But did you know that millions of pounds are currently spent on Patient and Public Involvement (PPI)? Activists working from the 60's through to the 80's campaigned so hard to be part of decision making within services they used that they started to be heard. In 2012 the government response 'Liberating the NHS, No Decision About Me Without Me' was published. PPI money is allocated within the NHS, large mental health charities, research organisations. The issue we face is that the PPI money is not going to partnerships with service user led organisations, service user led initiatives, or even Lived Experience Practitioner posts within these organisations. The few LXP posts that exist are generally are voluntary or extremely low paid bands.
As an example, one Trust spends £750k on PPI, the bulk of that spent on staff salaries. A fraction of the money is spent employing a handful of part time Peer Support Workers at a Band 2 post. That is the same banding as domestic staff who clean our buildings. Some of the Peer Support Workers have BSc modules in their discipline, yet they are valued as less than general Health Care Assistants working within Band 3 posts. The rest of the funding is spent on generic staff posts ranging from Band 4-8 to 'engage' service users, which do not require either lived experience of mental health conditions or even qualifications in working within this discipline. What sort of message does this give to people with Mental Health conditions, or staff who have mental health conditions that they often have to keep quiet about?
I've seen highly qualified individuals having to choose between moving disciplines and take generic 'admin' type posts or traditional clinical posts or stay caged within their present post. Some stay because they see that LXPs offer a vital piece within the service jigsaw that other disciplines can't offer. But I see these people, some previously social workers, teachers, trained in law... or else insanely talented at what they do from their Lived Experience apprenticeship. I see them caged, feel their pain and distress at not being able to effect culture change because the decision making posts are occupied by people working from a 'generic' lens. I feel it because I am one of these people.
I have probably tried every tactic in the book to influence change. This included over-achieving and excelling in order to actively demonstrate what could be done if only things were different. I've worked on the development of services and strategy, achieved a Masters of Science award within my discipline, won awards for work and being very vocal about the need for change. I remember watching a documentary where a statistician worked out how much harder a Black person would have to work to overcome obstacles to being a Prime Minister than a White person. But within the NHS, working harder, being better, achieving more... none of this has worked.
There has also been the fight to develop as an LXP. The fully funded MSc I was accepted onto needed to have organisational support. I had applied 4 times, without the necessary support, so could not be accepted onto the course. The excuse given was that someone else within the team was doing the course and I had to wait for them to to complete the course. By the fourth application, the person had completed their course, but support was still denied. I was able to get support from Emergence CIC instead. Bizarrely, I was asked by the Service Lead of the service that worked in to not do the course, to defer for a year, when I would be given organisational support from my NHS Trust. I refused, because I knew the funding would not last forever. I was then told that I had to attend work every Thursday for a weekly team meeting - Thursday being the fortnightly course date. Historically I had only attended half of the tam meetings, as I was one half of a job share. The request seemed unreasonable, however I knew that I would be facing disciplinary action if I did the course and missed any future meetings. I was forced to put in a grievance, as I was concerned that I could end up being sacked. I won the grievance, and returned to work, able to do my job and stay on the MSc, which I was doing in my own time. I found out that the main reason the manager did not want me to do the MSc was because they felt that my Banding was too low to have such a qualification. From that, I would assume that the promised organisational support would have never materialised, and I could have missed an opportunity I could never have otherwise afforded. But the price of fighting was very high. The stress led to a breakdown and being off work for six months. In that time I could not do my self employed work, and I needed the help of a support worker. At one point were so bad that she had to access a food bank for me. I also had the feelings of utter shame from explaining to my tutors why I was struggling so much. It felt like confessing to domestic violence. Like a battered wife or child, I wanted my employer to support me, not hurt me. I wanted to feel proud of where I worked. Instead I felt like I was being disloyal, or a bad person.
Over seven years, nothing has changed in terms of opportunities for career progression. I've seen talented people leave, one Band 2 peer support worker left to go on to work privately as a Band 8 service user lead, working with commissioners in a different area. It seems as though we can be tolerated if we aren't working within organisations, but if working within, we have to be kept down.
This year I have started regularly attending Board Meetings, specifically to ask a public question regarding equality, spending and career development of Lived Experience Practitioners. The purpose is to ensure that these issues are heard and minuted within official documents. It ensures that when issues regarding equality or working conditions for Lived Experience Practitioners happen, we can demonstrate that these issues were brought to the attention of decision makers and were known. Even if the issues are not acted upon, just asking the question achieves something.
The ideal is that the questions will be taken seriously and changes will happen. Change often takes a while, so while I'm not holding my breath, I'm hopeful that individuals are listening and becoming curious enough to educate themselves on these issues. I'm hoping that they will see more than a lone crazy person who is audacious enough to trot into the room of power and ask awkward questions. I've also been able to observe how things work, pick up themes and issues that relate to how and why we are treated in the way we currently are. I've also been able to see that many Directors as individuals are people trying to do the best they can with the knowledge that they have. It's hard to see alternatives to the way that things are currently unless you have that option presented to you. Change is naturally resisted and treated with suspicion. Part of the issue is that our not being represented throughout the hierarchy means that these perspectives never make it this far. Hence the regular attendance and questions.
Doing this alone is tiring and at times devastating. There have been meltdowns and sob fests hidden away in toilets, there has been the impact on my mental and physical health. Fortunately I have an excellent mental health team, a stable and supportive home life.... and... the invaluable support of fellow LXPs working with the same issues across the UK.
The community of people who lived with mental health conditions and are actively interested in mental health services is vast and disparate. We often don't agree, or campaign on different issues. We call ourselves different things - there is currently no shared language that defines us. Some call themselves Mad, Service users, Patients. Some are grassroots activists with specific causes that they campaign on. Some work as LXPs within service user led organisations, some work as LXPs within charities or publicly funded organisations such as the NHS. Some are freelance.
I spend a lot of time on social media, familiarising myself with current issues and the various perspectives people within our community think about them. I notice the missing faces - there are so few BAME LXPs on Twitter. I also keep in touch with LXP colleagues in real life. It helps me to have a good overview of what is happening, constantly checking on the way I think about or approach issues. It gives me strength to keep going, because as an LXP, we are often working in isolation from others working within our discipline.
Spending time within our community made me realise that whether we were activists, working within service user led organisations, freelance, charities, NHS or research, we were all facing a shared issue. We don't control the way funding is spent and we don't make strategic decisions about how the projects and services
National Service User Network (NSUN) is campaigning alongside Shaping Our Lives because service user led organisations are facing extinction - 150 members of NSUN closed within one year. Austerity has hit them hard, as funders have diverted funding to generic organisations and organisations which had previously worked with them stopped employing their services. Professor Peter Beresford has written a Guardian article and an article for a peer reviewed journal on this subject, and Disability News Service has also written an article on the subject.
Within the NHS, the issue I faced was replicated across the UK, with LXP posts being rare and often lower banded posts, and their managers frequently and decision makers within the hierarchy being generic, non-LXP posts.
The research sector faces the same issue: PPI and involvement research is publicly funded, but those funds are preferentially allocated to generic research organisations employing generic researchers, bypassing non-service user led organisations or employing service user researchers in principal investigator or senior, decision making posts. This impacts on what is researched, the research question itself, and the research method that is chosen. Decisions about how services are designed often relies on the evidence base from research, and if people with lived experience are not deciding what issues they feel are important is researched, these issues will never be understood adequately to improve services in a way they will find helpful. This subject was addressed in the paper authored by Prof. Peter Beresford, Prof. Diana Rose, and Dr. Sarah Carr.
LXPs who do work at consultancy levels are often forced to work freelance, as service user led organisations are folding and the organisations who receive funding will not employ them to use their high skillset to work within their discipline. They then have to navigate financial uncertainty and have none of the guarantees or rights of an employed person.
Highlighting the theme of placing barriers to people with mental health conditions making decisions about how PPI money allocated to engaging and involving us is extremely problematic. Like all systemic discrimination, the issue is invisible, it isn't within the consciousness or radar of those who make decisions about how money is spent. The evidence base isn't there, although some are working towards developing this and increasing awareness of the issues. But the nature of our community - disparate, crossing various disciplines (research, service design, consultancy, clinical, training, etc) means that we are isolated and do not communicate these issues to each other and understand that this issue is not a local one, it is a systemic issue that is replicated nationally.
Funders and organisations have repeatedly demonstrated that given the choice, we are not going to be employed as partners and equals within projects that are supposed to 'engage' us. Our individual efforts do not seem to have made much difference. However, the money is sourced from public funds, which exist because people within our community lobbied for it to exist. It appears that we may need to go back to lobbying for our money to be controlled by us, and to be decision making partners or employees where it is co-produced with other organisations. Legislation or conditions placed on how our money is spent may be the only way change will happen. Until then, we rely on the goodwill of those who control the funds, and in most cases, this does not mean partnership with us.
With all of these issues boiling away, the problem felt vast. But was the answer simple? Legislation on this would help everyone, everywhere? It would change how we can work in all of our areas. It would mean that all of our individual efforts in our local area would start to bear fruit, if we were able to be part of the decision making on how money was spent and projects were designed.
It isn't such a crazy idea either. As people with a mental health disability, we have a protected characteristic that is enshrined in law. If the local LGBT centre only employed LGBT people in low-paid posts, and all the management and decision making posts were held by straight people, there would be uproar. If organisations championing the needs of people within the BAME community did the same thing, employing White people within all of the management and decision making posts, it would also not fly. Our LGBT and BAME activists have paved the way for effective activism and change, as people with mental health disabilities, we need to follow their example and learn. It can be done.
The idea boiled away, and there was a trigger to working towards this. I was going to attend a conference where Sir Norman Lamb was a keynote speaker. Norman previously worked with Emergence CIC prior to its closure, and also worked with Service User Consultant Sue Sibbald on the Personality Disorder Consensus Statement, which was launched in Westminster. I had heard good things about him from colleagues. The cheeky, impulsive daredevil side of me decided to knock up an email. I mentioned I would be attending the conference and asked if he would be able to catch me before or after his talk to give him an info pack about LXP issues, and potentially arrange a meeting. I told him he couldn't miss me, I'd be the one with the unicorn hair who would inevitably be wearing something colourful.
The day before I got one of my Pink Sky Thinking marketing packs together, but added a covering letter outlining the issues & asking for a meeting to discuss these. I popped in a couple of papers outlining some of the issues we face - if memory serves me rightly they were by Dr. Sarah Carr and Dr. Jijian Voronka. Most of my packs have a novelty pen... usually a pink fluffy flamingo. But I had some wobbly pink Llama ones. The Llama's face looked very much like a lamb - so I went with that one. If you are going to give someone important a bright pink pack with a novelty pen you may as well go all out.
On the day I found a seat down the front and waited. Apparently MPs tend to be extremely time bounded, and arrive just before and leave straight after appointments, with assistants ensuring they get from one appointment to another on time. I hoped I would be able to catch him. I checked my phone, and realised that I had an email from his office. Norman would look out for me after his talk. He was true to his word, he spotted me on the front row (the unicorn hair has its benefits) said hello, and promised to speak to me afterwards.
During his talk I was blown away by the level of knowledge he had around mental health. He knew his stuff, this wasn't just someone who was reading a few stats off a piece of paper one of his assistants had given him. He openly talked about how suicide had impacted his family. His insight around the services not being neglectful but needing a different approach to the ones they use at the moment was unusual. Often families who have experienced death by suicide after a family member has been discharged are angry that their family member was not in hospital at the time. However, Norman mentioned the tens of thousands of pounds spent on his sister's inpatient treatment, and wondered if it could have been used differently, in a way that helped. This was music to my ears. As someone whose Mum jumped from a bridge, and who lives with a wider emotional range - which includes suicidal feelings which I have previously acted on - I know that the cycle of intense inpatient admission followed by discharge isn't the answer. The evidence base also supports this. But to hear it from someone who has experienced suicide within their family was refreshing. Being able to step back and think critically about alternatives rather than assume that not being locked up in a hospital ward was the answer isn't easy to do when you have lost someone you love. It is also work I'm passionate about - designing services for people who struggle with complex or developmental trauma that works with their needs, including surviving feelings of suicide.
After the talk, he had to go directly to a meeting with CEOs of local NHS Trusts, but he made sure he approached me, said hello and took the big pink folder full of information on the issues. I think you can judge the character of a person by how they respond to being presented with a pink folder with a pink drama-llama-lamb inside. Norman definitely passed!
I followed the introduction with an email back to his office, thanking him for making the time to say hello and giving more background and papers to support the issues faced. I hoped he would agree to a meeting, and suggested one with myself and fellow activists who work in this area.
A few weeks later, I received an email asking if I would like to meet with Norman in Portcullis House, the Parliament offices. I hadn't yet mentioned the potential meeting to fellow activists - so excitedly got in touch with them, and was delighted (and relieved) of their support with taking the issues forward.
There are so many people working in this area, so in the end decided to contact people I knew who were both working towards changing the system and had a visible social media presence in terms of actively advocating for changes in online groups and Twitter and through publications.
In the end, five of us - me, Sarah Carr, Hollie Berrigan, Sheena Dean and Melanie Ball were able to attend the meeting. Peter Beresford and Sue Sibbald could not attend, but offered support, advice and copies of papers for background research.
In Part 2, due tomorrow, I will blog about how we came together as a group who work disparately within very different organisations and prepped for the meeting.
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