THANKYOU for your GOFUNDME support to get us to SODIT festival!

Just £117 to go!!!

SODIT festival happened in Sheffield on Sat 11 September, and we were there! Survivors of Depression In Transition, with the excellently inspired acronym of SODIT, support people who identify as women who have depression related illness. The festival was a perfect opportunity to mingle with and get the LXP Revolution word out to fellow Lived Experience Practitioners in the community to join in sharing their own experiences about what it is like to work in organisations, whether there are positive examples of what works well or the sadly universal experiences most have of discrimination, stigma and career blocking. We also wanted people to share any action or activism taken by people locally. But mostly, we wanted to connect.

SODIT was amazing in enabling organisations and individuals to attend and to have stands, which were free. However, being a grassroots motley crew of individuals in Birmingham with no organisational structure or funds, we had no resources for a stand. No marketing materials, money for travel to Sheffield for a team of us to go up.

We had 3 days to pull something together, with little time, energy and resource between us to do this. Hand making and creating a stand is a lot of work, so we decided that printed materials – leaflets, banners, badges, and promotional T-shirts were the best option, with a mix of car pooling and train to keep travel costs to a minimum. However, the combined travel and marketing materials were estimated to be approximately £500 (estimates had to be made as invoices from printers and train fares were not yet finalised). We held our breaths, collectively raided credit cards, PayPal, piggy banks and a savings for laptop which the individual activist was hopefully going to use to help with work like this, in between twatting around on social media and online window shopping. Then we started a GoFundMe for £500. We had no idea if we would reach the target, if it was enough, if we would be truly up shit creek with no pounds to buy a paddle.

The GoFundMe started well, and we have raised just over half of our target. The good news is that the total amounts were less than expected – some of our team couldn’t make it, which cut down on travel costs and extra T-shirts. SODIT covered the cost of travel, which went directly to us on the day rather than the GoFundMe campaign. SODIT also provided free tea, coffee, biscuits and lunch!

So, that just left us with materials costs to raise funds for, which were a grand total of: £380.85. We have raised £264, which leaves us with just £116.85 to raise.

Can you help us get there? Pretty please?

Did your NHS Trust accept or reject LXP Funding? The FOI results are in!!!

In December 2021, NHS England offered all NHS Mental Health Trusts in England the chance to apply for funding for a Band 7 LXP post. Band 7 is a management banding that sits just below strategy decision making posts. Most LXPs are managed by non-LXP staff in these posts, whereas this role would have funded an LXP to lead a co-produced training package and manage LXP staff, who would also have been employed at fair payment bands. Despite most Trusts not employing one LXP at Band 7 out of the hundreds of other staff employed at this level, we can now reveal that less than half of the NHS Mental Health Trusts applied for this funding.

NHS England has responded to our FOI (Freedom of Information Request), which is detailed below. You can read the response on the What Do They Know website here:

Dear LXP Revolution,  

Thank you for your Freedom of Information (FOI) request dated 02 August

Your exact request was:

“In December 2020 the Adult Mental Health Team at NHSE offered Mental
Health Trusts the chance to apply for funding for a Band 7 KUF Lived
Experience Professional role.

Please provide a list of NHS Trusts which:
* were given the opportunity to apply for funding for the post
* applied and were successful
* applied and were unsuccessful
* did not apply for the funding

In addition, please provide:
* Reasons why some trusts were successful and details of the posts that
were developed (ie. job description/person spec)
* Reasons why some trusts were unsuccessful in applications
* Reasons trusts gave as to why they did not apply for the funding
* Any dates when this funding will be re-offered to NHS Trusts”

NHS England holds information in relation to your request.

NHS England has provided information in relation to your request in order

Please provide a list of NHS Trusts which:

* Were given the opportunity to apply for funding for the post

All lead providers of secondary adult mental health services in England,
were able to apply for funding for these posts via NHS England Regional
Mental Health Teams in December 2020. All 7 Regional Mental Health Teams
were asked to cascade the offer to secondary care adult mental health
providers operating within their region.

* Applied and were successful

Funding was awarded to 24 mental health trusts:

Provider name
Avon and Wiltshire Partnership Trust
Barnet, Enfield, and Haringey MH Trust
Berkshire Healthcare NHS Foundation Trust
Camden and Islington Foundation Trust
Central and North West London Trust
Coventry & Warwickshire Partnership NHS Trust
Dorset HealthCare University NHS Foundation Trust
East London Foundation Trust
Essex Partnership University NHS Foundation Trust
Hertfordshire Partnership University Trust
Isle of Wight NHS Trust
Kent & Medway NHS Partnership Trust
Leeds and York Partnership Foundation Trust
Lincolnshire Partnership NHS Foundation Trust
Navigo CIC
Midlands Partnership Foundation Trust
Mersey Care NHS Foundation Trust
Norfolk and Suffolk Mental Health Foundation Trust 
North West Boroughs NHS Foundation Trust
Northamptonshire Healthcare NHS Foundation Trust
Nottinghamshire Healthcare NHS Foundation Trust
Partnership bid in line with Primary and Community Mental Health
Transformation (PCMHT) developments. Sheffield Health and Social Care
Foundation Trust (SHSC) and Primary Care Sheffield (PCS)
Surrey & Borders Partnership NHS Foundation Trust
West London Trust

* Applied and were unsuccessful

All trusts who applied received the funding.

* Did not apply for the funding

55 Trusts received the funding offer, of those 31 trusts did not apply.
The list of these trusts is provided below. Two trusts also put in an
application but then later withdrew, Devon Partnership Trust and Livewell
CIC. For the purposes of this FOI they are considered as not applying as
the application was later withdrawn:

Provider name
Birmingham Women’s and Children’s Trust

* In addition, please provide:

* Reasons why some trusts were successful and details of the posts that
were developed (ie. job description/person spec)
An example Job Description (JD) and Person Specification (PS) was shared
when the offer was cascaded to regional mental health teams. This JD and
PS document is attached to this response. Providers were successful if
they were able to confirm that funding would be utilised to recruit a role
in line with the JD and PS.

* Reasons why some trusts were unsuccessful in applications
No trusts applied and were not successful.

* Reasons trusts gave as to why they did not apply for the funding

* short timescales attached to the funding: the offer was cascaded in
December for a January and February allocation
* system pressures related to the Covid-19 pandemic: England was in the
third wave when the optional process was launched.

We hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review. This should be requested in
writing within two months of the date of this letter. Your correspondence
should be labelled “Internal Review” and should outline your concerns
and/or the area(s) you would like the review to consider. Internal Review
requests should be sent to:

NHS England
PO Box 16738
B97 9PT

Email: [1][NHS England request email]

Please quote the reference number FOI- 2108-1525161 in any future

Copyright: – NHS England operates under the terms of the open government
licence. Please see the NHS England Terms and conditions on the
following link [2]…

If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at
the following weblink:

Please note there is no charge for making an appeal.

Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows: PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [4][NHS England request email].

Yours sincerely,

Freedom of Information
Communications Team
Office of the Chairs, Chief Executive Officer and Chief Operating Officer

NHS England
PO Box 16738
B97 9PT

Tel: 0300 311 22 33
Email: [NHS England request email]


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Why the KUF funding affects ALL LXPs in England

Why should funding for one type of training affect ALL people who work as LXPs (Lived Experience Professionals) in the English NHS? KUF (Knowledge & Understanding Framework) training funding sticks a flag in the sand, it sets a standard for equality of pay, working conditions, support and CPD (Continuing Professional Development. Now we have funding for senior LXP posts, trusts can’t get away with saying there is no funding or pathway for career progression. If they don’t want to use one form of training, fine – but there is no excuse to replace it with one that exploits us instead.

We have had some interest in the Freedom of Information request we made recently to NHS England asking which Trusts applied or did not apply for this funding. Some people have raised the issue that the funding was only for a specific Band 7 post – an Advanced KUF Lead. KUF training is a specificly developed to improve the way that staff work with people with Complex Emotional Needs’ aka ‘Personality Disorder’ and to improve service user’s experiences whilst in services. The training is entirely co-produced from awareness through to MSc level, with LXPs paid equally to colleagues – hence the Band 7 post.

Not all NHS Trusts choose to offer this training. The key word here is choice – they could if they wanted to. Some have chosen to develop their own training instead, choosing to employ or not employ LXPs to do so. This has been the case in Birmingham, where unpaid service users developed an alternate training, being paid a daily £20 expenses fee. This fee extended to delivery of training to staff groups. This training replaced KUF, where LXP trainers were paid £300 a day to deliver training sessions. LXPs were not consulted on this change, service users were not told about the existence of LXPs, of the existing co-produced training and the professional value of the work. They also did not know that their work as unpaid service users would result in putting paid LXPs out of work. This is what has inspired the activism in Birmingham.

Other NHS Trusts who have rejected funding and have decided not to use KUF training may have perfectly adequate alternative approaches that employ, support and pay LXPs equally to the KUF model. Some may have better, more supportive and highly paid approaches.

The key point is this: For NHS Trusts who did not accept the funding, have you made this decision with LXPs, and are they aware you have made this decision for them? Have you put in place funding for alternative Band 7 posts, if you do not want to uptake the KUF model?

Not having the infrastructure, ability or support is no longer a good enough excuse. If you do not have the expertise to do this yourselves – hot tip – you won’t – you will need to employ external LXP consultants to come in and help you do it. Then you will need to employ senior, strategic level LXPs to do the work of leading the development of the infrastructure. It’s not within the gift or skillset of non-LXP staff to do it – which is why you haven’t done it yet.

The FOI request itself goes beyond asking for names of trusts that have and haven’t uptaken the funding, it also asks for reasons given (see below). Once we have the details of NHS Trusts who haven’t uptaken the funding, the next stage will be to send an FOI request to each trust individually asking why this was, if LXPs were involved in the decision, if alternate band 7+ posts are planned. This will ensure the research is balanced in terms of having a wider picture of which trusts are making a commitment to employing LXPs in senior posts and which aren’t, as the funding application in itself does not provide this information.

We are also hoping to reach LXPs from each NHS Trust to invite them to join this stage of the research.

Viva La Revolution!!!


This week’s update is there is no update. At least, that’s the update we’ve received through, the site that we’ve used to make our Freedom of Information request. If you ever want to make a FOI request, you can do it direct to the organisation, but we’ve decided to use this website because it records the FOI request on the website, so that the request and the Trust’s response is publicly available. We feel that if more people start asking FOI requests through the website, it will provide publicly available data to help LXP’s evidence conditions, pay, career progression and examples of discrimination.

Freedom of Information request, due to be answered by 2 September 2021.

PSW Describes Traumatic Experience: Part 2

Part 2 of a series of blogs – read part 1 here:

After sharing my story with the board I was in high expectations and filled with excitement. However my placement within Day Services was going through a major overhaul. The Centre where I was working was closing after many years, a 6 week programme was going to replace the old system. Many of our clients were in shock and disbelief, there was a real sense of hopelessness. This for me was disheartening, a daily struggle, even though many were being referred to 3rd Sector Agencies it wouldn’t be the same. Support networks would be lost and friendships strained. Many of the staff also struggled to adjust to the thought of clients bonds being taken away it was at times Soul destroying.

My one and only work supervision was chaotic. We had already lost one Supervisor who had championed Peers with (a Birmingham NHS Trust). This left a large void, but the uncertainty was clear. In our fortnightly Peer meetings there was no structure, we were all working in different teams around the trust which meant different roles. All of us were lone working so it was difficult to support each other. Exactly a month after sharing my story with the board, I was struggling to cope, problems at home plus disheartening work environment with no real support had a detrimental effect on my mental wellbeing.

I contacted our trainers from Nottingham pleading for help but because of funding issues they weren’t allowed to intervene. An emergency peer meeting with just us peers was clear none of us was happy and felt unsupported by Supervisors. Our then supervisor hadn’t done the peer training tried to understand but her lack of knowledge just made matters worse. Every where I turned seemed hopeless.

Unfortunately I was sectioned for a few weeks, that’s when the contracts for band 2 went out. I remember thinking that was a tactical move, because some of the other Peers wanted and needed job security so felt pressured to sign. Myself and a couple of others refused to sign because deep down we knew we were being pacified. Something didn’t seem right at all. Again another Supervisor left so again our voices would be lost.

Not long after another supervisor was recruited and I was invited by email to come along to introductory meeting where our concerns would be discussed. To my dismay when I arrived I was taken to a side room by the New Supervisor and told I shouldn’t of come because I was on sick leave even though I was invited. Her abrupt tone left me feeling confused and upset. Peer support was inclusive, whether you were working or not we all supported each other. I wasn’t even offered my bus fare back or any sort of apology. The change happened overnight with a division between those who had jobs and those who didn’t. It seemed completely wrong that those people that had done the training but not taken up roles were excluded. This was not what we trained for or expected. It created a clear division and a lack of trust and support, which we were promised…….

Watch out for Part 3 in the series – subscribe to our blog!

Has your Trust turned down LXP funding?

Our last blog promised to take you on a journey, using Freedom of Information requests to find out whether your local trust has been supportive of LXPs or actively withheld support when opportunities have become available.

Did you know that recently funding for a senior LXP (Band 7) post was offered to all NHS Mental Health Trusts in England? Did you know that this means that YOUR local trust was offered the chance to have this funding, allocated in January/February this year? Has a post like this been advertised locally? If not, why not? Did your trust even apply? Were LXPs locally part of the decision to apply?

Now you have an opportunity to find out. LXP Revolution has just sent in the FOI request. We have signed up to What Do They Know, a website that sends & publicly publishes responses from FOI requests. The response is due in 21 working days, on August 31. You can view it here:

The FOI that started a Revolution… Now YOU can too!!!

Do you want to watch an activism campaign that uses Freedom of Information requests to highlight discrimination and use this to push for equality for Lived Experience Professionals? Do you want to be part of it? Do you want to see how you can use the same technique locally?

Subscribe to this series of blogs, because we are going to do this and keep you updated as it happens. Anyone can volunteer to help. We will very much appreciate a help with sifting through the data and chasing up responses – Lived Experience Researchers (in fact any researchers!) particularly welcome. We will also be happy to pass on data from local trusts for LXPs to use to push for higher banded posts locally. So…. what is all this about, we hear you ask.

Let’s start at the beginning.

Roughly 18m ago, NHS England had been planning to offer NHS Mental Health Trusts to employ Lived Experience Professionals in a senior post (Band 7 on Agenda for Change). The post involved managing training delivery locally for KUF (Knowledge & Understanding Framework) training in working effectively with people diagnosed with ‘personality disorder’, ensuring that training was co-produced on equal terms with Lived Experience facilitators, who would be paid and treated equally to their non-LXP peers.

One of our Activist members knew about this funding development and had ensured that relevant senior staff in (a local Birmingham NHS Trust) responsible for developing and making decisions about this area knew about it. Previously LXPs locally had been told that such a role could not be developed because the funding did not exist.

Nationally, these posts started to be advertised, so senior staff were asked about the funding, to which they stated that they didn’t know, or that funding wasn’t available for mental health services, only forensic services. This did not fit with the positions being advertised elsewhere. NHS England were approached and asked when the funding would be offered to (a Birmingham NHS Trust). The response was that (a Birmingham NHS Trust) had already been approached regarding the funding for the post and had refused it.

The Activist put in a Freedom of Information request to gain accurate information regarding what gad happened, as it appeared that the information had remained hidden. It did not appear to have been discussed within key stakeholder meetings, the decision made about Lived Experience Professional career pathways did not appear to have been made jointly with a Lived Experience Professional. There did not appear to have been an Equality Impact Assessment done, as the post involved use of a protected characteristic.

The (Birmingham NHS Trust) took the full 21 days to answer the request. Staff who knew the answers to these questions were not open about the answers, and sadly these could only be found out through these means.

The lesson learnt was that the usual adage of there ‘not being enough funding’ to employ LXPs is not the true reason why LXPs are not employed within senior posts. The reasons behind why this is are much more complex than this – and could be a PhD thesis. Co-production is about power and decision making sharing, and declining to employ LXPs beyond menial posts – the trust in question mainly employs LXPs at a Band 2 level – means sharing this power. The true answer is indeed very sad, very bigoted, and very much the reason why we need to be employed in these posts – to challenge these attitudes and change them.

Think of the Black nurses who came here to work in the 50’s. In the 2020’s, structural racism & racist individuals still exist, but the workplace has become less overtly hostile, there are laws that make racism illegal. Current activism is to promote people of colour past the Band 8 ceiling to very senior and board director level posts.

LXPs do not face the level of violence and overt discrimination that our Black colleagues, family & friends face back then, however, we can learn from the path they have forged, feel confident that discrimination can be fought and change can happen. We can go from those menial posts and get up to that Band 8 position. Hopefully it won’t take us 70 years to reach the time to fight for our own Band 8 ceiling to be lifted, but we aren’t there yet. We are still behind our colleagues of colour as we tread this path, but have them to thank for showing the way and that it can be done. For those of us who are both LXPs and people of colour, this is particularly a source of strength – because there are much less of us, being within an intersection of a group that is already so discriminated against within Mental Health workplaces.

The next Freedom of Information Request is one that has the potential to help all LXPs in England. The funding for the Band 7 post appears to have been sent out to all NHS trusts in England, so are sending NHS Rngland to ask for a list of all of the NHS trusts who were offered the chance to apply for the funding and all of the trusts who declined. The FOI will also ask for the date when the funding will next be offered. The next stage will be contacting each trust that declined and to ask why this was, and if they are intending and making preparations to enable them to apply in the Autumn. They will also be asked if not, why this is. Trusts that did apply will be asked why they applied and for a copy of their job descriptions.

The thinking behind the FOIs will be to understand how many trusts have refused funding and what reasons they give for doing this. However the main purpose will be to let local LXPs know that this funding was available and was declined, and will be available again in the Autumn.

Our hope is that locally, LXPs across England will start asking their own trusts ‘Why?’ and pushing for equality and being treated equitably in our workplaces. We do not we are the only LXPs whose trust have made a decision to deny us a potential senior post without jointly being part of this. We think there will be other LXPs who will have a keen interest in whether their Trusts will take up this funding in the Autumn.

Viva La LXP Revolution.

Into The Twilight Zone: A Mad Board Meeting

The following blog has been contributed by an observer of the May Board Meeting of an NHS Trust. You can find out more details about the meeting by looking at the ‘Birmingham Activism’ area of the site. The author used dictating software to write the blog, and the blog was anonymised afterwards.

Into The Twilight Zone: A Mad Board Meeting

Hey LXP Revolution

Sorry it’s been a while. I was enjoying the weather. It’s been a nice weekend. So, just before bed I seem to remember that I promised to write out something for you so I thought I’d better get started. I don’t know what I’m going to call my blog. It might be something you might want to put in as a title I wasn’t sure whether the meeting, or the Twilight Zone or surreal meeting or mad meeting, or just not sure so feel free to pick a title.

So, what I wanted to say was that I was invited to an NHS Trust board meeting, basically it was a public meeting. So members of the public could attend hence why I was there. It seemed as though things looked okay at the beginning when I first joined. But where it started to become a little bit strange was when the chair decided that it was now the public’s time to do a q&a, and I believe we had roughly about 30 minutes, and I was only there for support. But it was quite disconcerting, as well.

So Activist A began her questioning. She had a lovely kind of countenance she had everything ready, everything was all set up. I forgot to say that obviously Activist B was on camera first, and I could feel this kind of cold gust of air, whether it was coming from the screen, the people attending or because maybe I’d left the window open, I’m not too sure. But I felt slightly unwelcome. As Activist B spoke, and it wasn’t because of what she had to say. It was just I felt the dynamics and the energy had changed on the virtual platform which of course is probably a first, especially on a virtual platform.

I ended up listening as Activist A had her questions. And each time, there was a certain member of staff who I shall name, R who ended up constantly having her hand up. So the question hasn’t finished. It’s only started probably about three five words. And there was a hand up going straight up, and there wasn’t really much listening afterwards because I could notice first bring the hand up. Miss, R that she basically had issues with Activist B. And along with Activist A. Every time she put her hand up. She kind of started to sit back and she didn’t look so she was having any kind of issues in, in trying to listen but I think she wasn’t really listening. She looked quite angry, and I felt the adrenaline probably pumping through her veins, hence why she was so quick off the mark with the raise hand button.

Activist A started with questions. R wanted to respond to every single one of them. There was almost a disdain for people with lived experience and lived experience practitioners to be in the meeting. I think she hated the questioning, which of course as a member of the public we are allowed to make. I don’t know what else to say. I just sat there it resembled a slight kind of circus ground. And actually that wasn’t from any of the LXPs that had attended.

It was just a very surreal situation we had somebody giving out a question, firstly being told that if that person has written down that question on paper, they can always send it in. I mean if you have a question. Obviously you’re not going to remember it, especially if it’s got certain things in there. So yeah, it might have been good for them to receive the questions, but you still have a right to finish your questions, and to actually say them. We’re all members of the public, we’re all sat there.

So that made me think so, there was something to hide the responses that didn’t think were very satisfactory was very much about what we don’t know anything, nobody’s told us anything. I think this is where the mismanagement. Well, the managers are so out of touch with their workers, because they all claim to basically know nothing. From middle management to board, there is quite a big gap. But is this supposed to be such a big gap that people don’t know about things such as people being discriminated against.

R has been on many training courses I’ve gathering, and I’ve seen her pop up on social media, talking about how she’s almost anti racist. And that’s all great up to a point, but it was the intersectionality that I was more concerned with, because you have somebody who is mixed race. So, ding, ding, ding, the colour. And then you also have that same person with a disability, but there was no Ding ding ding there. I didn’t understand how somebody who claims that they’re going to be anti racist or claims that they’re so well intentioned because they learned so much from people teaching her about her privilege that she would understand the basics of intersectionality, so I think there is a lot of training there that maybe people actually need. I found it actually quite hard to be in the meeting to tell the truth.

As I said earlier it’s, it just felt like it was a circus from start to finish. And I found myself quite wound up. The fact of LXPs only being paid 20 pounds a day, that really caught my goat up. I felt that was really wrong. And if we can shout about other countries paying three pence per day in the sweatshops abroad. Why is nobody shouting for people in this country 20 pounds a day that’s abysmal. How do you expect to survive on that and then also work on top of it, and you work for, let’s say eight hours 20 pounds I’m just totally lost. That’s just over two pound an hour. And I just thought wow, this is absolutely nuts. Who would work for that slave wage slave labour. So yeah, I found myself getting quite angry about that. As I said intersectionality was not really addressed, etc, so that they had any understanding of what that actually is or what that look like the strangest part of it, which I felt was a minimising exercise was in the middle of speaking.

Somebody put their hand up and I assumed it was probably going to be a question from somebody who was part of their board as a governor. And this woman comes on, lets call her Karen. So this Karen comes on and she starts talking about carers and how it was fantastic about all the work that they’ve been doing and how she’d attended these recruitment sessions. And I thought, Wait, whoa, like, Wait a minute. How can you attend a meeting, and in the middle of a serious conversation about discrimination and discriminatory practices. You come out, and you talk about, like, in the middle of the subject matter, I mean really what planet were you one. Definitely, not on Earth. And actually for me. That’s quite a worry that we have inept. People working within the NHS. I think you really needed to focus on the conversation and to really understand what the situation was. And if the questions have to go in, when do we as members of the public attend that meeting get a response. We wouldn’t that in a lot of ways, cover your own ass behaviour that I’m not such a fan of within the NHS.

Don’t get me wrong. We all want to minimise kind of things that have happened to us, especially about things, but things that are on record things that people know about things that people don’t want to know about, actually, with all the distraction techniques with the anger. But I felt within that meeting, I just thought that this wasn’t really the right place for it. We were all supposed to be adults in that conversation in here feel like it felt very, kind of one sided. And I’m quite sad to think that people with lived experience are not valued at all. I mean 20 pounds a day. Just over two pound an hour, where have we gone wrong. Where’s the country gone wrong. We’re have our officials and the leadership gone wrong. And is this a case of the pretence of being anti racist but actually covering being racist, but actually making it look as though you’re not quite disconcerting. It gets me angry every time I think about it actually, uh no meeting should ever do that to somebody, but actually I just felt that I needed to make sure that I said something about it here.

I know this is such a small blog of what happened, but some of it was just absolutely surreal. The gaslighting. The whole kind of minimization or how has happened to you. None of us did it. We didn’t do anything. No, you really do. You’ve done something you’ve actually invalidated people’s feelings. And that’s something that this place and this time, maybe even in this country, or people matter. And I think on that note, I’m going to leave it there. My recommendation would be that certain staff, if not all of them should get training on what intersectionality is. It’s not enough just to be anti racist. You have to actually know what that means. If you don’t know what that means. I’m sorry but you’re failing.

Thank you.

Observer from May Board Meeting of an NHS Trust in Birmingham.

Mad on the inside: An ally’s perspective on one organisation

Anonymous: Former employee of the mental health trust discussed on this website.

I started working in mental health before recovery and lived experience practice made their way into the zeitgeist (not long before honest). Being very familiar with the recovery movement, I was sceptical as ‘recovery’ started to appear on everything. And I was right to be. I felt, witnessed and experienced superficiality, tokenism and a need to be seen to be doing, with minimal meaningful doing.

I expressed my concerns that we were co-opting recovery, that it was something that should happen in spite of us. That’s the whole point. I was horrified to see professions jostling to ‘lead’ on recovery initiatives and was told why it was important we embrace it to advance our profession, to make us relevant to the trust’s agenda. Professions parking their tanks on the recovery lawn because it was politically expedient. Without a clue about recovery, its history and its meaning. Assuming they already ‘got it’, or not really caring, just wanting to be seen at the centre.

There was great fanfare as peer support workers (PSWs) were trained. People had their ‘stories’ featured in organisational magazines. But underneath it? There were no plans to meaningfully incorporate lived experience, and a fundamental lack of appreciation of what it offers. If they really ‘got it’, it was immediately squashed back in its box by the hierarchical power holders.

PSWs were split up and dropped into teams that had no forewarning or understanding of how to optimise the amazing resource they were handed. PSWs had no clear role or understanding management. In many cases, because teams had no clue what had happened, PSWs were left to do tasks no one else wanted. So those celebrated PSWs came in with expectations that they were welcome and potentially transformational. But the reality? They were, well, dogsbodies, ignored and forgotten. Or was it hoped that something magic would happen in spite of mental health services? I felt the tensions as a ‘professional’ staff member passing as sane but working in a system that challenged my values. What on earth would this have been like? Other bloggers here will tell you. 

There are allies though. People who, even without reading the literature, could see it was completely unacceptable that a PSW could not have keys when a member of domestic staff could. I saw them fight in vain, arguing and then trying to prove with a pilot – that it was complete bollocks to suggest a PSW couldn’t have keys. What was the risk? I don’t know if anyone dared say it explicitly – but I suppose, someone mightrun riot and open all the doors? No-one worried that I had a set. Ultimately this staff member would need to phone to be let into the building, or ask to use the toilet. I like to pursue things more aggressively, probably much to the annoyance of the powers that be, I remember leading a group fight against a policy change we thought was unacceptable. And being told, that that isn’t leadership. Apparently inspiring people to join you in a vision to make a change only counts as leadership if you go in the direction the organisation has already set. 

What’s going wrong – across many organisations, including this one? In my view, there is too much attention on being seen to be doing what is fashionable (trauma-informed care anyone?) without actually bothering to understand what it is, or conveniently ignoring that it also involves change in organisational structure and culture. Staff who point this out ‘don’t get it’ and are an irritation to be forced back into delivering what has always been done.  For me, that was the problem the activists here experienced attending the board. Organisational culture is set at the top, and this culture is one of: keep everything under control. Be strategic, be seen to be doing the trendy things. People who point out other ways, ways to genuinely change, they are pests not leaders. Why this culture? Maybe for fear they would need to acknowledge some serious work needs to be done. And it does. 

Not that anyone has asked, but I think an independent review by someone with expertise on what is good practice, is needed. I know these people and places exist, because now I work in one. It couldn’t be more different. It is expected, not a battle met with confusion, that you work with people with lived experience and pay them the maximum you can. No one has said recovery or trauma-informed to me once. It has been astounding, and this is what every mental health trust should be aiming for. But of course, there has to be a genuine desire to do the work and be better.  

Anonymous: Former employee of the mental health trust discussed on this website.

How Can Allies Support LXPs Against Discrimination?

Musings on a Twitter Thread by Tamar Jeynes

I often think a lot of my best bits of inspiration come on Twitter – it’s fast paced, with lots of witty banter. The critique is harsh, but there is a lot to learn if people listen. 

A recruitment drive for psychology posts at a Birmingham NHS Trust on Twitter lauded the positive aspects of the organisation, whilst showcasing the wide range of posts amongst its 5000 staff and advertising some of these.

One of the Birmingham Coalition who had attended a board meeting where LXPs had asked about the organisation rejecting funding to employ just ONE LXP at a more senior band saw the thread. The difference in how Lived Experience Professionals were treated, versus their ‘sane’ counterparts, could not be more stark. They were so disgusted that they added a response, stating they would never work for the organisation after seeing the way it treated its LXPs.

I too had felt pain reading the recruitment thread, the confirmation of being seen as ‘less than’ was particularly concrete after the experience having had the first senior LXP opportunity in a decade quashed, without so much as a tokenistic attempt at ‘involving’ any LXPs in the decision. Even the dreaded abuse of an unpaid service user with no understanding or experience of LXP work to rubber stamp something and claim ‘co-production’ wasn’t used. So yes, I could very much understand the person’s irritation and anger, I felt it too.

However, the response was different to ones we had received elsewhere. I wish we could receive such responses elsewhere as standard – first of all, he validated the experience and the impact it had. This may not sound like much, but LXPs are constantly being told these experiences are not discrimination, have not happened the way they think they have, or are otherwise questionable.  Validation is refreshing, so different to its polar opposite – gaslighting: whereby all self-belief and self-worth is gradually stripped away.

The next stand out part of the tweet was the apology. The apology meant so much, because it was something that was usually wrapped up in ‘we are sorry that your feelings were hurt’, a careful avoidance of actually apologising for doing whatever shitty thing caused the hurt in the first place.

Before becoming too excited though: the tweet’s author was not the person who would be making the decisions of whether to hire, fire, block or build up staff.

This led to a Twitter thread musing on what allies could do to support LXPs, and what Leaders could do to make real changes that would make a real difference.

Read it below:

1.There is something so heartening about seeing a Tweet that acknowledges that the issues #LXPs have are real & they do have an impact. Because discrimination usually isn’t acknowledged #LXPs never get to hear the words “I’m Sorry” as a genuine apology as opposed to being in the>

2. context of ‘your perception’ being skewed or ‘your feelings’ being hurt, which is like a backhanded way of being told that the way you are being treated is caused by you & not the people doing it to you. It places fault back with you, rather than being the responsibility >

3. of people accountable within organisations to change discriminatory behaviours. It lets people who lead organisations off the hook if there’s no acknowledgement an issue exists, because then there are no national campaigns to appease, no pesky equalities targets to reach. >

4. The most sinister impact of telling #LXPs that the discrimination they face is their own ‘perception’ is that it has insidious undertones of pathologisation, especially for service users managing psychosis or trauma that includes a different perception of reality as a symptom>

5. The issue of gaslighting #LXPs is a very real and very harmful one. There is also the high risk of colleagues abusing power, whether unconsciously or maliciously. But staff can help #LXPs by listening to & validating their experiences of discrimination in the workplace. >

6. Colleagues can also ensure that they do not stand by and be complicit when these instances of discrimination take place. Back up your #LXP colleague, even if you can’t stop the exclusion or discrimination. Many LXPs are isolated from colleagues in their discipline, so doing >

7. this can be invaluable. I wish that I’d had colleagues within teams I’ve worked in that I could have relied on. This won’t cure the issue, but it may be what helps your colleague survive it at work. The issue of stopping discrimination lies firmly with people leading in these>

8. organisations to ensure that they develop systems & structures alongside #LXP consultants who are experienced and trained in this area, paying them equally & Sharing decision making power with the staff they are working with. There is no excuse to use unpaid service users who>

9. have no experience of #LXP work, the discrimination faced, the specialist types of supervision needed, the structures and systems that need to be in place to support this and the specialist nature of some LXP roles, meaning that training and CPD is a factor to include. >

10. The very use of unpaid service users or #LXPs who are new in post, untrained or inexperienced in this area & are not given shared decision making power is that they will not have the knowledge to ensure that these aspects are in place, or the power to do this. They can more >

11. easily be used to rubber stamp an initiative than an #LXP consultant trained to work in this area, whose job and professional reputation will include ensuring that necessary structures are in place and will ask tough questions when necessary. The result of not doing that is >

12. #LXPs who then have to work under inadequate structures that unpaid service users or early career LXPs have been used to rubber stamp WILL lead to distress, high staff turnover, leave LXPs vulnerable to discrimination. I’ve seen my colleagues hospitalised over this. >

13. I’VE been hospitalised due to the impact of inadequate structures and experiencing discrimination, in my attempts to try to draw attention to and change this. I am very aware that one day, these issues could cost someone their life. That could have been one of my colleagues >

14. It could have been me. So please, please – those of you who have read this far, actively think about how you can support your #LXP colleagues in the work they do. You never know what a difference you may be making or how much that person may need that. >

15. The tweet I shared at the beginning of the thread by @Mianthrope is a great example of the right way to respond. He acknowledged #LXP discrimination was real & that it had a real impact. He apologised. He talked about there being a long way to go and actively working on it >

16. However, it has to be acknowledged that @Mianthrope isn’t responsible for the structures and discrimination, so although the apology is kind, it is not coming from those ultimately responsible for this. The reparation – the future change, is also in their hands >

17. Discrimination towards #LXPs is not something that is unique to ‘bad’ individuals, ‘bad’ organisations or even ‘bad’ areas. It is very much a universal issue, like any other type of discrimination, and needs awareness and active work to address it. >

18. Leaders, we need you to step up and recognise the discrimination your Lived Experience Professionals #LXPs face. We needs you to be aware of the additional risk of gaslighting that comes with being open about a mental health diagnosis >

19. Leaders, we need you to put aside egos. We need you to give up power and start sharing power with #LXPs. That is what co-production is, a sharing of decision making power. That means us designing our own structures for working & support >

20. Leaders, if you really are serious about coproduction with Lived Experience Professionals #LXPs, you will employ us through all levels of hierarchy in your organisation. From your Exec & non-Exec Board members through to apprentice Peer Support Workers. It will happen ✊🏻✊🏽✊🏿

@threadreaderapp please unroll ❤️

Originally tweeted by Tamar Whyte-Jeynes 👖 (@tamar_whyte) on 13th Jul 2021.

— You can also read the entire thread here:

Birmingham Activism Update: Dox Attached!!!

There comes a point where you have to stop attempting to engage, dialogue or negotiate. When a party that has not demonstrated any previous evidence of listening and acting upon reports of discrimination and harm to wellbeing it is a pretty good indicator. When current attempts are met with the same recycled rhetoric, seemingly delivered with increased irritation, future confidence of action to tackle it hits the rocks. It’s time to abandon the ship that never sailed.

When we approached the (Birmingham NHS Trust) Directors at their Board meeting, we asked them questions, but we weren’t messing around around, either. The last question asked at what point we should stop engaging with them, save our valuable emotional labour, and take the complaint elsewhere to external organisations / regulatory bodies instead.

The response was poor – many of the answers they gave within were arguments challenged by us previously. Some information appeared inaccurate. To engage would be to yet again invest valuable emotional labour, time and energy in a response – one we knew would not be listened to.

Instead, we wrote a letter. The letter addressed the response, but the audience was no longer the addressee. We knew the addressee would never, ever listen to us, see us, hear us. How could we ask people who felt we were not their equals to be treated that way?

The intended audience was in the carbon copy address bar.

  • We CC’d in (NHS Trust) Board of Governors
  • We CC’d in local commissioners
  • We CC’d in Healthwatch Birmingham
  • We CC’d in West Midlands Combined Authority
  • We CC’d in National Service User Network
  • We CC’d in the Care Quality Commission
  • We CC’d in NHS England
  • We CC’d in the ten MPs who represent the Birmingham wards:
    • Preet Gill MP – Edgbaston
    • Jack Dromey MP – Erdington
    • Tahir Ali MP – Hall Green
    • Liam Byrne MP – Hodge Hill
    • Shabana Mahmood MP – Ladywood
    • Gary Sambrook MP – Northfield
    • Khalid Mahmood MP – Perry Barr
    • Steve McCabe MP – Selly Oak
    • Andrew Mitchell MP – Sutton Coldfield
    • Jess Phillips MP – Yeardley

We are not even started yet.

Documents attached, names and trusts redacted.