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The LXP Revolution

The Revolution isn’t new. It’s just been invisible – like us. They haven’t seen us, and we haven’t seen each other – but we’ve been there.

For as long as we have existed, people who have worked within the Lived Experience Professions have reported examples of exploitation. Labour had been unpaid, poorly paid and emotional labour has regularly been abused. The most frightening thing is that these examples happen in plain sight, but are not seen. When individuals report these issues, they are often alone and do not have access to support from other LXPs, people who can validate their experiences and explain this phenomenon to them. Well-meaning (or not so well-meaning) colleagues may think they are offering support through attempts at telling LXPs that issues they are raising are based on their own perception, or that these issues do not exist.

The Revolution has been the times where we have met other LXPs, shared our stories, learnt that we are not alone. The Revolution has been the times we have supported each other to carry on. The Revolution has been whenever we have reminded each other or ourselves of what LXPs do, and disentangled that from it becoming entangled into a generic organisational post that bears no relation to the heart and soul of what we do. The Revolution is when we are challenging something in a world where we are alone.

The most powerful thing we have in this Revolution is sharing our support, knowledge experiences and validating what is happening to us.

Jacqui Dyer: It’s not OK to replace paid LXP staff with Unpaid Service Users 

What is the difference between asking an NHS Trust a question at its AGM vs. asking the same question at the GtiCP Conference? 

Well – for a start: the GtiCP (DCP Group of Trainers in Clinical Psychology) conference didn’t censor the question and actually put it in the chat. Second, they actually asked it. Third, they allowed the speaker to answer the question. But let’s back up just a minute.

Going back a few blogs to the reason why LXP Revolution came into being – local Lived Experience Professions staff had decided that after many years of being discriminated against, a group, anonymised (safe from retaliation) way of bringing awareness to this issue was needed.

The straw in a long line of issues to break the camel’s back was the replacement of Lived Experience Professional trainers paid at £300 a day with unpaid service users. The LXP trainers were part of an NHSE and MoJ nationally funded training, which was not costing the trust anything and worked on a co-produced, power-sharing model with clinical trainers. The in-house replacement was one that had been developed with unpaid service users and relied on unpaid SU facilitators to co-deliver with clinicians.

Aside from the moral and ethical issue, there was no financial sense behind doing doing this, as funding has recently been increased and national support invested. Instead, local LXP trainers found themselves without work, and local service users exploited for doing highly valuable work.

LXP Revolution sent a question to be read out to Birmingham & Solihull Mental Health Foundation Trust’s Comms Team prior to the AGM, and CC’d in the Trust non-clinical Staff Governor: 

PLEASE ENSURE THIS IS READ OUT PUBLICLY AT THE AGM AS WELL AS THE REQUESTED WRITTEN RESPONSE, WE ARE TRYING TO RAISE PUBLIC AWARENESS OF THIS ISSUE FOR SERVICE USER WORKERS. THANK YOU.

Question for inclusion at AGM:

During the last financial year, a coalition of Lived Experience Professionals who work at consultancy level approached the board to ask why people in Lived Experience Professional Trainer roles being paid at £300 a day were being replaced by unpaid service users. The trusts had also rejected the chance to apply for funding for a Band 7 post connected to the same stream of work. We have seen senior level work dismantled and people who work at this level made to feel unwelcome at Recovery meetings where service users in voluntary and entry level posts have been guided by people in non lived-experienced public engagement posts without knowing that existing specialist work has been eradicated, or even existed in the first place. This has led to extreme distress for people who are working in this field, facing losing their jobs, and being hospitalised in the process.

We have already asked you at the Board Meeting but would now like to ask you again at the AGM, why this has happened, and if you intend to make this right with the people who work beyond entry level in the Lived Experience Professions, who have now almost been removed from working within the Trust at this level?

On behalf of LXP Revolution, please provide a written response that we will post on our website at www.lxprevolution.co.uk

We sent the question at 10.28 and the AGM was due to start at 11, with questions towards the end of the meeting. People could add questions on the day and the questions sent ahead of time would be added. Questions not read out on the day we’re supposed to have a response within 48h. The question was not read out. After the meeting, we sent an email to ask why this was:

Hello BSMHFT Comms Team (CQC CC’d in for info)

We are extremely disappointed this question was not asked in the AGM public meeting. Could you let us know why that was? We’d sent it in ahead of time so that you would be able to prioritise it in the queue and asked for it to be read out at the meeting itself. 

FAO CQC: Could we have this added to the complaint that we have lodged with the CQC, reference number: ENQ1-XXXXXXXXX

Best wishes

LXP Revolution 

As part of our activism, we’ve also contacted the CQC about the issues we’ve experienced, so we decided to cc them into the email and add in the reference number to add to the complaint. It may have been worth cc-ing the CQC in on the first email, because we had a fairly swift response this time:

Thank you for your question, however it was received after our 9am deadline for submissions to the AGM.

Please be assured that we will come back to you with a written reply.

Sadly we hadn’t been aware of the deadline until it was too late. However, we do feel that if it was possible to add questions to the chat during the meeting, could this effort not have been made, especially since the non-staff Governor had been cc’d in? Either way, the Trust has never to date shown any respect towards us in terms of acknowledging that this has happened, explaining why, inviting us to be part of deciding how to make this right. Nothing. No accountability.

This lack of accountability has been reflected in the promised response within 48h. For a Trust so fastidious about time, those 48h ran out midday on Friday. So as of writing this today, Monday at noon – we are now 72h past their own deadline. It kind of puts our 90mins (albeit 30mins before the meeting to a mailbox that was being constantly checked at the time) into perspective, hmm?

So let’s go back to the GtiCP (Group of Trainers in Clinical Psychology) Conference. Jacqui Dyer was speaking about Equality in services and staffing within mental health services. Apparently BSMHFT is one of the pilot sites focussing on inequality. After a few jaws were picked up off the floor, we asked about the issues of LXP workers in NHS being discriminated against and how this could be measured, giving BSMHFT’s example of replacing LXP Trainers with unpaid service users.

Jacqui’s response?

“That’s not ok. It shows a lack of understanding of lived experience working. It shows a lack of understanding of career pathways for lived experience workers, goes against recommendations at Health Education England.”

It is sad that whilst it appears that at a funding level – the money – the supposed level of power – we seem to have support – yet this support can so easily be subverted by NHS Trusts that have no accountability for diverting funds away from LXP workers. If they aren’t paying the exploited, unpaid service users… where the hell does this money actually end up?

Is it time for an LXP Union?

Have you heard of an Lived Experience Professional winning a tribunal for discrimination at work? Have you even heard of an LXP taking their employer to a tribunal for discrimination at work? There may be a reason for that.

Lived Experience Professions currently do not have their own union to offer protection at work. Obviously, like any other employees, we can join any of the unions currently available if we fit their membership criteria. This is often an issue for people who are self employed – which is many of us. However, even those of us who are in a union seem to be unhappy with the service we receive. Cases of discrimination are usually not supported by legal teams and we are left high and dry at tribunals… which never happen. Refer back to the opening paragraph. Its also tough and a very excruciating experience to go through for anyone, let alone someone who is managing a mental health condition. Many people settle. Organisations obviously attempt to palm them off with the smallest settlement possible. There is no research that can be slipped in here to confirm the appalling service we get. Only personal experience and conversations with colleagues lamenting their own. 

The conversations are not just with colleagues, however. Leadership teams from within service user led organisations acknowledge this. There has been at least one attempt to set up a union. However, a union is a big undertaking. Who has got the time, or the energy? How is something set up that supports everyone? How do people on very low income afford the fees? What about self employed people? What about the training of union reps? The legal side? 

How would the union itself is actually a good employer to its own Lived Experience Professionals, leading by example?  An organisation cannot help others unless it can help itself, and just because an organisation is Lived Experience led, does not automatically make it a good employer to Lived Experience employees. It is the insight from that experience and embedding of that learning into practice that is the work we do, and we need to be able to do it ourselves to help ourselves. It is hard work.

Setting up a union may be something that is out of reach in the present – maybe we need our own collaborative, pressure group and/or working with an existing union to have our own division within a larger umbrella. At the very least to educate lawyers and national/regional decision makers – who ultimately decide whether they will or will not represent us at tribunal – why it is so important that some of these cases are brought to court and that awareness is made of the issues that LXPs face. The discrimination cannot be addressed until people see it. Presently it is invisible. Unions used to stick up for workers rights, change legislation and address discrimination in a much more proactive way when this was needed in the past. They need to step up for some of their most vulnerable members now – many of whom will fit in several intersections of marginalisation and been impacted by trauma.

This blog is acknowledging the need, but asking how we fill the gap. It is a discussion we need to have on a wider, national level… then somehow… make it happen.

The Difference Between LXPs & Involvement Staff

Are you a Lived Experience Professional (LXP) who has ever been asked to explain the difference between what you do, vs. Public & Patient Involvement (PPI) staff? It’s a toughie, because on the face of it, the work often looks the same.

The main difference between the two is People working within the Lived Experience Professions (ie research, peer work, consultancy, etc) have ‘Lived experience of a mental health condition/using services’ (as relevant to the post). The work they do is required to be done using the insight from this lens. This does not mean telling their story to an audience of staff or service users, rather, it could be used to inform interactions between service users and staff, service design, pathways of care.

This blog goes into further detail as to what differences there are, and gives papers at the end that you can use to support any conversations you are having with people at work about employing senior LXP staff vs. creating more generic PPI positions.

The most powerful thing of all is what LXP working does inside an organisation. Mental Health services are notoriously stigmatised towards staff with mental health conditions. Think about it. Does your CPN really want her colleagues knowing she is bipolar? Does your psychiatrist really want his team knowing that he is schizophrenic? That cold your Care Co-ordinator has told her manager she has – the one that is really work based stress?

LXPs are staff who walk about with those diagnoses on their head. They challenge the status quo. They are brave enough to be open with what others feel is a weakness. By this very action, they are change agents, promoting change within the organisation. They show that it’s ok to work with a mental health condition. They show what can be achieved in periods of good health. What can be done with reasonable adjustments. They challenge the ‘Us & Them’ divide between staff & service users.

Examples of LXPs in NHS settings are usually Peer Support Workers. They are most often than not the most poorly paid people in the organisation. Some organisations pay them on the lowest banding – a Band 2, whereas Domestic, Cleaning and Support Worker staff may be working at a Band 3.

If you speak to LXPs who work within an NHS organisation, you may be surprised to hear how different the experience of being treated as a volunteer to a paid worker is. Teams and staff that once smiled and were kind as audience members to recounting a story become more hostile within Multi Disciplinary Meetings (MDT) or when they suggest a different approach to working with a service user. LXPs are looked at differently, treated differently to other staff members. In some areas the turnover of LXP staff is very high. The sickness rates are high. When you speak to individuals, it is not the work that makes them sick. It is the way they are treated at work. Some are very badly hurt. Some are hospitalised. Careers are often non-existant, with people finding it impossible to get beyond entry level roles if they want to continue working.

It is very rare for areas to have senior LXP staff who manage LXP staff. Ones that do, such as Central North West London Trust, have an entire division of 80 LXP staff, employed across hierarchies and job roles. This is a case study of LXP working that has been adequately supported for both LXP and existing staff, allowing integration and culture change.

Most Public and Patient Involvement Staff do not have ‘Lived Experience’ as an essential criteria of their job role, and they are not required to work from this lens. Many do have lived experience of a mental health condition, many use these within their jobs. However, it is not an essential part of the role and because of this roles are essentially involvement, research, management. It is also not a protected part of the role, so if anyone were to protest an LXP approach it could not be watered down to fit a less service user focussed approach, such as approaching a team with a purely management focus, with the rest stripped out.

The other essential differences are that without the ‘LXP’ within the job description, people working in PPI roles never have to face the same discrimination that a Peer Support Worker, LXP Trainer or LXP Researcher will face. Until a person works in and experiences this type of discrimination, it is hard to describe, or at first, believe once the brain allows identification of this.

People in PPI roles often manage people in LXP roles. There is a power imbalance, and in order for an LXP to progress, they, she or he needs to forsake experiential working and move over into PPI working instead.

This tension between PPI and LXP working isn’t new. It’s become more of a conversation in NHS and healthcare settings since the NHS started to employ Peer Support Workers. However, this argument has been going for a much longer time in research, with literature – both grey and peer reviewed – in existence.

If you need to argue the toss with your local NHS trust over the difference between PPI and LXPs, here are a few excellent articles written by some heavyweights in the world of LXP working:

What LXP working is:  Professor Diana Rose explains the difference between having lived experience and working from this lens in very simple terms here ‘it is not an additive thing, it is a synergistic thing’: https://www.youtube.com/watch?v=pWHm1nPK-Mo

How much ‘lived experience’ is enough?: Dr. Louise Byrne – ‘Understanding mental health lived experience work from a management perspective How much ‘lived experience’ is enough?’ https://pubmed.ncbi.nlm.nih.gov/32753099/

PPI vs SUI: Prof. Peter Beresford explains the difference: https://pubmed.ncbi.nlm.nih.gov/32753099/

Discrimination: Many LXPs, particularly in the research field, have written about the discrimination and damage to their careers because they worked as LXPs rather than from a PPI lens. One paper on this subject of PPI funding ensuring SU led researchers – even our professors – do not get funding is here: https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1423907

Not Letting LXPs Lead their Own Work: National Survivor User Network were invited to join a steering group for Health Education England’s new framework for peer working, but declined after discovering that this was not led by peer workers. Tamar Jeynes wrote a response article for the NSUN’s site here: https://www.nsun.org.uk/news/response-to-the-competence-framework/

The Emotional Labour of LXP Working:

Alison Faulkner – Emotional Labour of this type of work: https://www.tandfonline.com/doi/full/10.1080/09687599.2021.1930519

Dr. Sarah Carr writes about working within Academia as an LXP Researcher, between service user volunteers and non-LXP staff, both of whom viewed her with suspicion, in the brilliantly titled ‘I am Not Your Nutter’: https://www.tandfonline.com/doi/abs/10.1080/09687599.2019.1608424

The Cost to LXPs

There is, of course, a cost to not letting LXPs lead their own work. The wider cost has been written about in the Guardian by Peter Beresford. He describes the loss of contracts given to survivor led organisations, leading to many of these folding during Austerity. While an article from 2019 about the wider survivor landscape may seem a bit removed from LXP working, think about it this way: where did the Lived Experience Professions evolve from? Who originally demanded change, and organised for things to be different? NHS and larger organisations tend to stop employing LXPs beyond entry level. To go beyond that without monumentally fucking up, they need to employ LXP consultants who already work at & have knowledge of the post at that level to guide the process. The people who know what it is really going to be like working from the inside, sandwiched in the middle of two groups, how to support entry level staff and build career structures and equity that will benefit not just themselves, but make working in the organisation a better place and receiving services a better experience. The very act of employing an LXP consultant to aid with this process in itself demonstrates the equity in attitude that is needed to do this effectively. Peter’s article shows why we need to understand the difference between what is Service User Led, and what has been funded for Patient Involvement – but without monies being given to organisations or projects that are. Most organisations who do Patient Involvement work do not employ LXP roles in senior decision making posts. While this happens, LXPs & SU led organisations will continue to loose financial, career, job/contract opportunities. You can read Peter’s article here: https://www.theguardian.com/society/2019/jan/14/austerity-denying-patients-care-service-users-voice

In case you are wondering what you can do as a lone voice, you can do a lot. You can know the difference between LXP and PPI working and let others know too. You can use the articles to argue the point with your PPI Lead. Maybe they don’t take much notice of a perceived low banded worker. But citing an article by Professor X or Doctor Y who actually work in and are experts in the discipline to back your argument equals the power divide a little. Reading the articles, you will realise that you are not a lone voice – there are others too. If you feel so empowered, you can write a blog about any of your experiences, comments or reflections as an LXP – we are happy to publish your work anonymously if that’s what you need.

#VivaLaLXPRevolution!!!

Update On The FOI Requests: Who’s Ballin’ & Who’s Stallin’?

At LXP Revolution, we have asked EVERY SINGLE MENTAL HEALTH TRUST IN ENGLAND about their recent response to employment of LXPs at senior level. That is 55 Trusts. We are swamped with info.

As you may (or may not) know, we are a bunch of lived experience volunteers. We are having to do this in our own time, managing our own health… so please bear with us. We will be updating this blog this week with where we are with each Mental Health Trust.

What we can say is that some Trusts have provided the information without any delay or issues. Others have not. In particular, they want us to name names of people within the collective. FOI requests require a name, usually an individual. But a company can make a request. In extreme circumstances, WhatDoTheyKnow.com will step in to make the request if a person needs to make the request anonymously.

We all know that LXPs face horrendous discrimination and career blocking, which is why we have used the name of the collective. We want to be treated equally to any company requesting information. Frankly, if it’s good enough for NHS England, who replied without any issues – its good enough for any other Mental Health Trust.

Keep checking back on this blog post this week for updates as we trudge through the data…

Which NHS Trusts Are On Santa’s Good List? Who Got The LXP Band 7 Funding??

Was your NHS trust on one of Santa’s Good List, ready to be blessed with a brand new Band 7 Lived Experience Professional (LXP) to join their staff?

At LXP Revolution, we’ve been heavily focussing on activism which highlights trusts who haven’t applied for funding to employ LXPs when given the opportunity, despite us likely being the most discriminated and least represented staffing group in the NHS. We say likely, because even in the Workforce Disability Equality Standard (WDES), the metrics used to measure the experiences & careers of disabled staff, we are not counted. As we are not counted, currently, we don’t count.

However, there are nuggets of hope. There were 24 NHS trusts who did indeed apply for the funding. This means that in theory there should have been 24 new Band 7 LXP posts created in England. With so many trusts giving excuses as to why they can’t employ LXPs, what do we learn from those who say they can? What are they doing differently? Building up our repertoire of examples of where it has been done gives us an answer when excuses are made as to why something cannot be done, because it can. It can be done 24 times over.

Knowledge is power. So we felt it was time for our next Freedom of Information request, stage 3 in our activism. This stage asked Trusts what they felt had enabled them to apply for the funding, as several trusts have mentioned short timescales as being a reason not to apply. Understanding why things work well give us more ammunition to work with when we are given reasons as to why people holding the power tell us that they won’t.

We also asked them about job adverts and whether people had been employed yet. Part of the issues we face as LXPs is not having consistent search terms or job titles when we search for posts on NHS Jobs. We are also inconsistently filed away, often sitting in the administration category, which is highly inappropriate for the work we do and may mean that rookie searchers miss posts when looking for a job.

See the FOI Request below, as well as the list of trusts it was sent to:

Dear ….

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 (LXP) role. They have let us know via a FOI request that your trust successfully applied for this funding.

When applying for the funding:

• Have you employed LXP staff at Band 7+ before?

• What do you feel enabled you to meet the short turnaround & funding criteria?

• Was this decision made collaboratively with LXP staff – if not, were they made aware of the offer?

• Was the decision subject to an Equality Impact Assessment?

If your trust has advertised the post, please provide a:

• Job title

• Job Description

• Person Specification

• Date the post was advertised

• What category on NHS jobs it was advertised under (ie. admin, AMHP)

• If an applicant was successful & is in post

Yours faithfully,

LXP Revolution

There were 24 NHS Trusts listed on the NHS England’s list of Trusts who applied for funding, all of whom were successful.

In the process of sending the FOI request out, one trust – *North West Boroughs NHS Foundation Trust* – had been dissolved in 2021, and its services have now been transferred to Mersey Care NHS Foundation Trust & Greater Manchester Mental Health NHS Trust. Interestingly, Merseycare has applied, whilst Greater Manchester has not applied for the funding. It will be interesting to see if Greater Manchester utilises this opportunity to develop the Band 7 opportunity after all, if Mersey care will have 2 posts, or the potential post will be lost alongside the funding. Sheffield had a joint bid with its community mental health and primary mental health trusts. We just contacted the community Mental Heath team, in part because the primary mental health team was not listed on WhatDoTheyKnow.com. However as there is only one post, data from one team will be enough.

This left 23 trusts that were contacted:

• 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)((*done))and Primary Care Sheffield (PCS) – ((*Can’t find))

• Surrey & Borders Partnership NHS Foundation Trust

• West London Trust

You can see the requests & their progress here:

https://www.whatdotheyknow.com/user/lxp_revolution

Why did your NHS Trust reject an LXP funding opportunity?

The blog that caused the most fury on social media: why did NHS Trusts not apply for a funding opportunity in 2020 to employ a Lived Experience professional working at a Band 7 grade, when most Trusts use the excuse of not having funds to employ an LXP beyond a Band 3 or 4 level?

Our Freedom of Information Request revealed that 31 out of 55 of the NHS Trusts in England did not apply for the funding. All of the remaining Trusts who did were successful. This has left us with the question: Why didn’t the others?

This takes us to Freedom of Information Request Stage 2: Contact the NHS Trusts and ask them.

That is a lot of NHS Trusts and a lot of FOI requests. But at LXP Revolution, we know that we LXPs are worth it. Knowledge is Power. Research is an activism tool that can change harmful and discriminatory systems. We have seen this with the very recent #StopSIM campaign, as well as the adage ’if you’re not counted you don’t count’ – used to promote the monitoring of the LGBTQ population, and NHSE’s recent WRES (Workforce Racial Equality Standard) and equivalent WDES (Workforce Disability Equality Standard).

So, here is the FOI that will be winging its way to an NHS Trust near you:

Dear ….

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 (LXP) role. They have let us know via a FOI request that your trust did not take up the opportunity to apply for this funding.

People who work in LXP roles face a high level of discrimination and blocks to their careers. Most NHS Trusts do not have posts beyond Peer Support roles (Bands 2-5).

Please provide answers to the following questions:

*Reasons why this funding was not applied for

*Was the decision subject to an Equality Impact Assessment?

*Has your Trust made plans to reapply for the funding, which will be offered again this autumn/winter?

*Do you currently employ LXPs in Band 7 roles?

*If you do not employ LXPs in Band 7 roles since declining the opportunity to apply for funding, please explain why your Trust does does not do so and what steps you are taking to change this situation.

Yours faithfully,

LXP Revolution

This will be sent to:

BIRMINGHAM AND SOLIHULL MENTAL HEALTH NHS FOUNDATION TRUST

Birmingham Women’s and Children’s Trust

BLACK COUNTRY HEALTHCARE NHS FOUNDATION TRUST

BRADFORD DISTRICT CARE NHS FOUNDATION TRUST

CAMBRIDGESHIRE AND PETERBOROUGH NHS FOUNDATION TRUST

CHESHIRE AND WIRRAL PARTNERSHIP NHS FOUNDATION TRUST

CORNWALL PARTNERSHIP NHS FOUNDATION TRUST

CUMBRIA, NORTHUMBERLAND, TYNE AND WEAR NHS FOUNDATION TRUST

DERBYSHIRE HEALTHCARE NHS FOUNDATION TRUST

DEVON PARTNERSHIP NHS TRUST

GLOUCESTERSHIRE HEALTH AND CARE NHS FOUNDATION TRUST

GREATER MANCHESTER MENTAL HEALTH NHS FOUNDATION TRUST

HEREFORDSHIRE AND WORCESTERSHIRE HEALTH AND CARE NHS TRUST

HUMBER TEACHING NHS FOUNDATION TRUST

LANCASHIRE & SOUTH CUMBRIA NHS FOUNDATION TRUST

LEICESTERSHIRE PARTNERSHIP NHS TRUST

LIVEWELL SOUTHWEST CIC

NORTH EAST LONDON FOUNDATION TRUST

NORTH STAFFORDSHIRE COMBINED HEALTHCARE NHS TRUST

OXFORD HEALTH NHS FOUNDATION TRUST

OXLEAS NHS FOUNDATION TRUST

PENNINE CARE NHS FOUNDATION TRUST

ROTHERHAM DONCASTER AND SOUTH HUMBER NHS FOUNDATION TRUST

SOLENT NHS TRUST

SOMERSET NHS FOUNDATION TRUST

SOUTH LONDON AND MAUDSLEY NHS FOUNDATION TRUST

SOUTH WEST LONDON AND ST GEORGE’S MENTAL HEALTH NHS TRUST

SOUTH WEST YORKSHIRE PARTNERSHIP NHS FOUNDATION TRUST

SOUTHERN HEALTH NHS FOUNDATION TRUST

SUSSEX PARTNERSHIP NHS FOUNDATION TRUST

TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST

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?

https://gofund.me/0198bd48

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
2021.

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
below.

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 AND SOLIHULL MENTAL HEALTH NHS FOUNDATION TRUST
Birmingham Women’s and Children’s Trust
BLACK COUNTRY HEALTHCARE NHS FOUNDATION TRUST
BRADFORD DISTRICT CARE NHS FOUNDATION TRUST
CAMBRIDGESHIRE AND PETERBOROUGH NHS FOUNDATION TRUST
CHESHIRE AND WIRRAL PARTNERSHIP NHS FOUNDATION TRUST
CORNWALL PARTNERSHIP NHS FOUNDATION TRUST
CUMBRIA, NORTHUMBERLAND, TYNE AND WEAR NHS FOUNDATION TRUST
DERBYSHIRE HEALTHCARE NHS FOUNDATION TRUST
DEVON PARTNERSHIP NHS TRUST
GLOUCESTERSHIRE HEALTH AND CARE NHS FOUNDATION TRUST
GREATER MANCHESTER MENTAL HEALTH NHS FOUNDATION TRUST
HEREFORDSHIRE AND WORCESTERSHIRE HEALTH AND CARE NHS TRUST
HUMBER TEACHING NHS FOUNDATION TRUST
LANCASHIRE & SOUTH CUMBRIA NHS FOUNDATION TRUST
LEICESTERSHIRE PARTNERSHIP NHS TRUST
LIVEWELL SOUTHWEST CIC
NORTH EAST LONDON FOUNDATION TRUST
NORTH STAFFORDSHIRE COMBINED HEALTHCARE NHS TRUST
OXFORD HEALTH NHS FOUNDATION TRUST
OXLEAS NHS FOUNDATION TRUST
PENNINE CARE NHS FOUNDATION TRUST
ROTHERHAM DONCASTER AND SOUTH HUMBER NHS FOUNDATION TRUST
SOLENT NHS TRUST
SOMERSET NHS FOUNDATION TRUST
SOUTH LONDON AND MAUDSLEY NHS FOUNDATION TRUST
SOUTH WEST LONDON AND ST GEORGE’S MENTAL HEALTH NHS TRUST
SOUTH WEST YORKSHIRE PARTNERSHIP NHS FOUNDATION TRUST
SOUTHERN HEALTH NHS FOUNDATION TRUST
SUSSEX PARTNERSHIP NHS FOUNDATION TRUST
TEES, ESK AND WEAR VALLEYS NHS FOUNDATION 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
REDDITCH
B97 9PT

Email: [1][NHS England request email]

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

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]http://www.england.nhs.uk/terms-and-cond…

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:
 
[3]https://ico.org.uk/global/contact-us/

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
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Yours sincerely,

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

NHS England
PO Box 16738
REDDITCH
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 WhatDoTheyKnow.com, 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!