Welcome to the first joint Southwark & Lambeth mental health carer forum. As usual the forum brings together unpaid carers from both London boroughs and beyond to seek engagement from mental health, health & social care services. There will at times be national speakers or I might talk about carer empowerment or carer awareness from my books.

Speakers for January were

Cristina Clarke – Non Regulated Staff Code of Conduct Project
Lee Roach – Lambeth reflections on carer focus
Alice Glover – SLaM involvement structure breakdown

Cristina Clarke presents

Cristina explained a little bit about her role and work that she is doing to support the nursing Directorate. The project is specifically on unregulated staff code of conduct that they are currently reviewing. Cristina is a nurse by background where she is supporting the Deputy Chief Nurse for the trust to look at the policies and the clinical policies across the Maudsley NHS Foundation trust. Cristina is also working on safer staffing. One of the things that they have done recently, is set up a service user and carer review group looking into such policies. It is true that in the past policies can often be quite dry, quite long, lengthy, and at times don’t always have the voice of people using the services and haven’t always been scrutinized appropriately. So they have had to set up a group where service users and carers get involved, unfortunately they are low on carers, in fact, most of the people in the policy review group are service users, so they really want more voices from carers to help review clinical policy going forwards.

The thing is it’s not only policy regulation, but it’s related to staffing. They have got a code of conduct for the NHS trust, which is for those who aren’t sort of governed by a statutory agency. For example where the nursing workforce are governed by the National Nursing Midwifery Council, or medics are usually members of the GMC. SLaM have recognized that there’s a huge proportion of the workforce, including peer support workers, and psychologists, clinicians that don’t have a code of conduct. Still the Trust has regulation policy but it’s quite old. So they have been reviewing it and wanting to bring it up to date with national guidance. They are looking at aligning the policy with the trust strategy that was reviewed recently. Cristina mentioned that they are really keen to get some feedback from service users and carers, because it effects such a huge part of The workforce who are providing care day in and day out.

Cristina reminded us if anyone was interested in getting involved in policy review they actually have got some focus groups coming up. If they want to just have a read a bit and get some feedback, whether it be in a quite a structured way, or if it’s just informally just having a chance to read and feedback is all that is needed.

Alice Glover presents on involvement at South London & Maudsley

It was now Alice Glover turn to present. She is one of Muadsley’s Patient & public involvement leads. Alice actually attends my forums from time to time, and she wanted to talk about encouraging people to get involved at the NHS trust if the can. Alice and SLaM are really keen to get more carers / family carers to be involved in some of the NHS trust improvement work. Alice mentioned it was quite timely hearing what Christina had just talked about, because that’s a really good example of how people can get involved in helping improve the services. Alice moved to talk a bit about what the involvement register and how it works in terms of opportunities for people to review the policies.

The involvement register is literally a list of people who have experience of the SLaM services, either as a service user, or as a family member or carer, once you’re on this list, you can be paid for your time, if you help Maudsley services with service improvements. So the people that are in the group that Christina talked about are actually members of the involvement register, they may come together and meet once every six weeks. People can be paid for their time during the meetings, but they are also paid for their time if they’re reviewing documents.

Alice mentioned she understands that there maybe challenges around they’re carrying responsibilities but also people may be working. So for carers, it may be really important to have opportunities to comment on documents in their own time when it’s convenient for them. If they are able to get on the involvement, register, then there are differences that people can be paid for their time. And the payment rates are 10 pounds an hour for reading documents outside of meetings, if you’re on a Zoom meeting or a team’s meeting, and you might be using your data, then the payment rate currently is 15 pounds an hour. And you can do up to 30 hours a month. On the involvement register, it’s a very ad hoc, most people don’t do anywhere near 30 hours is completely up to you. Most people would do maybe a couple of hours a week before that.

I produced a list of involvement operations which Alice started talking about at length. Alice mentioned the list is quite a broad list. Each of the departments have collated a list of the sorts of things that people are involved in. Alice mainly covers Lambeth and Southwark. In those boroughs there are advisory groups. This is were there are a group of people with lived experience who meet every month and discuss service improvements.

Alice finished up her talk stating that a staff member or manager might come along to the advisory groups and say what projects they are thinking of doing, it could be thinking of making a change to the inpatient services and they want to know what the group thinks about it. As a carer, or family member, they can bring their own perspective and say, “Well, that might work. But have you thought of this?”

Alice feels that when people are designing services, historically, there have been times when the carers perspective hasn’t been included, and Maudsley NHS are trying to work harder to make sure that does happen. So advisory groups meet every month and basically they are a group of people giving advice around their lived experience.

Lee Roach presents on how Lambeth MH services have been engaging with carers

Lee Roach who has been supporting the forum wanted to run through some of the support that Lambeth MH services have been providing to carers. SLam now have a dedicated carer support service. There is carer support service for psychosis and bipolar. They predominantly have been operating their meetings by phone during the during the pandemic, plus they have a monthly support group where they run over teams a bit like matthew’s carer forums, which are kind of moderately well attended. It seems people have contacted by phone rather than using using online technology for groups. The Lambeth services usually have around 100 contacts a month with carers.

There are other means of carer support in the form of ward carer champions. Lee mentioned that the carer champions are individual staff members who are either based in one of their teams. So either at the ward or in one of the community mental health teams. They have been able to maintain a register of carer champions in all of their community mental health settings. So for the short term, their Lambeth support services the focus within the home treatment teams and all of the wards in the hospital who have got carer champions.

Lee continued stating that the way that they support them is that they have a forum every two months, which they share with Southwark support staff. So Southwark & Lambeth carer champions tend to meet and update. They have also been running these online groups, which have been reconfigured a number of occasions, around dates and times and things. Although online meetings are quite successful with community carer champions from the Lambeth community teams, there are not so successful with the impatient carer champions. So Lee is looking at probably running inpatient face to face groups as soon as possible with the carer champions.

The idea of these meetings is that they can share good practice. So some of the things that weren’t on the wards might not be working as effectively on those mental health teams. Some of the issues might come up against, and also just an opportunity for for those of us dealing with carer’s role in Southwark or Lambeth to kind of update them on changes across the trust new initiatives. These things could be like what will have an impact on carers. As mentioned Lee has been running a Lambeth inpatient family and carers group. These run every two weeks. Where it is a virtual meeting where they use the Microsoft Team’s platform. Lee has to request carer details from the impatient team managers and the carer champions where he gets in contact with carers and then he explains about the meeting, and then invites them along.

Lee also talked about support from matrons at the hospital who come along to the online carer support groups. They are joined by the community pharmacist to answer questions about medication that carers might have. Lee is also involved with Carer’s Lambeth Hub, where he attends a number of different meetings that they run carers collaboration. These groups usually discuss carers strategy where to make sure South London and Maudsley are finding out what’s going on with other carer organizations.

So that we can make sure that our people we’re working with about that, and also that we’re involved in black thrive, Lambeth wide initiatives around carers and Lee attends Matthew’s National triangle of care meetings, this is where South London & Maudsley is working on there triangle of care audit. There are going for their first star.

Welcome to the July update of my Joint Southwark & Lambeth Carers forum. The forum is focused on unpaid carers who care for someone suffering mental ill health.

Speakers for the July forum were

Carol Ellis: Promoting her son’s book regarding surviving suicide

MP Helen Hayes – Speaking about carer updates for the boroughs

Dr Natasha Tyler – An associate Researcher from University of Manchester

DR NATASHA PRESENTS ON HER RESEARCH.

Dr Natasha started off by saying that as a researcher from the University of Manchester at the patient safety Translational Research Center. She has been working with Matthew probably for about three or four years now. He’s been involved in quite a bit more research and she was just going to give a little bit of an overview about involving carers in quality and safety research. Dr Natasha wanted to speak a little bit about involving carers in quality and safety research.

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Welcome to the august update of the Joint Lambeth & Southwark MH carers forum. This forum is run online due to covid-19 restrictions. The forum is aimed at those who are caring for someone with a mental illness. It is important carers understand what the mental health, health and local authority services has set aside for them and their loved ones.

For the month of August we were delighted to have John Lavelle the service director for Lambeth mental health services. We were also joined by Lee Roach who is the Head Occupational Therapist for Lambeth. In attendance were the carer members from both Southwark & Lambeth, Healthwatch Southwark and the chair of trustee’s from Southwark Carers.

The maim talking point for the August meeting was the Lambeth Hospital consultation. John spoke about how they want to improve the quality of the inpatient wards so that they can meet the most basic needs of the clients/patients. John stated that SLaM are committed to supporting people who are in distress because of their mental illness, they have an opportunity to build a new purpose, new mental health unit and SLaM are planning around how can they can make the service sustainable essentially for the future. I could certainly say most if not all members agreed with what John said.

It is well known that there has been number of periods of consultation for 12 weeks between March and May 2020. In the presentation to the forum from John, there were 2 options. Option 1 being that nothing is done about the state of Lambeth hospital or Option 2 where SLaM looks to relocate 4 acute wards and the Psychiatric Intensive Care Unit (PICU) to a new purpose-built facility on the Maudsley site, Denmark Hill.

There was another option to develop a new facility on the existing Lambeth Hospital site, but it failed to meet 2 key affordability tests.

These were that the option required additional capital of between £30 million and £35 million due to additonal infrastructure and loss of capital receipts, coupled with a need to decant at least one ward to the Bethlem and another to the Maudsley, causing significan disruption.

So eventually planning permission was granted in January 2020 by Southwark Council to replace the existing vacant Douglas Bennett House facility on the Maudsley Hospital site. It was also mentioned in John’s presentation that Service Users, Clinicians and Carers from a number of boroughs attended workshops to help shape the design so that a service user voice was present from the beginning of the design process.

The facility includes 72 acute beds for Lambeth patients across four 18 bedded wards. The wards will be single gender, compliant with modern standards and ventilated with direct unsupervised access to outside space. The facility will also include a Psychiatric intensive care unit and a rehabilitation ward designed to support the needs of these services.

Lastly two national specialist wards, neuropsychiatry and eating disorders will be transferred from the Bethlem Royal Hospital.

The carer forum were then showed their first visual of what one of the rooms would look like.

John Lavelle mentioned the mock ups are designed to give a with an idea what we think the rooms would look like. It is based on the drawings of that the architects came up with so the forum saw then would be things like flooring, textures and colors and even then those things might change.

John showed us what the dining space consisted of. He explained in the dining space there are two gentlemen sitting through the window and to the left is that kind of living space as you will see in the top left hand corner, one of our wards, current dining room on the London hospital site.

The carers forum were shown some figures in where

• There were 235 responses regarding the consultation
• 48 people participated in focus groups and public event
• 148 responses in the online survey
• 24 people then also commented on facebook
• 171,189 were reached through the facebook adverts
• 12 email responses regarding the consultation

One thing noted was even though SLaM had the intention to have some face to face meetings, they ended up having to move everything to virtual because of the COVID-19 issues. There also was a focus on making sure new services would target hard to reach communities especially those from BAME background who often would feel they were being let down or having to miss out on services.

Of the response to the proposals with about 84 % of responses were being being in favor of the change. Plus of that 64% were positive in the move of the wards to Maudsley.

SLam also did a specific work with a black male group around the consultation, and I found that there needs to be some further work to do around culturally appropriate inpatient clinical offer.

A good example was that one member of that particular group mentioned that the ward looks great, but actually, it’s what happens within that Ward is most important. So John mentioned in regards to BAME communities that maybe we arent getting it right for the moment. There is still a lot of work to do.

There will be a piece of work that is going to start in September, which is going to be supported by black thrive, which then will have SLaM think about what their offer is to black men as an example, when they are using patient services. This is work in progress, but SLaM are committed to that as part of the feedback from the consultation process.

John mentioned that they will be analyzing that the data that they got back done by the trust or by the CCG. And it’s just a bit of worth reminder that the consultation was actually a CCG consultation, because they are the people that ask slam on their behalf to provide the services to Lambeth. So the CCG led on the consultation and now SLaM’s healthcare consulting team is going to do the consultation and they have produced a report on the Lambeth’s Together website.

At the end of the presentation I stated it was an excellent presentation and it always helps when you’re describing something that seems really complex. This is one of the reasons for this forum is to get carers in the community and those who’s going to be affected by those changes to get at least an idea and get a chance to ask queries or comments or even compliments if you think this is something that’s really needed

Questions from the forum members

First to ask queries where representatives from Healthwatch Southwark.

Healthwatch felt it was really interesting to see and wondered if SLaM had like a Lamberth versus Southwark resident breakdown, because they were a bit concerned that maybe less people from Southwark had been heard from because the presentation was kind of titled as like improving services for Lambeth.

Another interesting query was on how wide the consultation going to be? as in numbers wide. A carer queried on is it just the local community because the impression they got from the report is its the local community. Plus it’s a Lambeth hospital and it should go to the whole Lambeth and and what does it now offer to the whole of Lambeth rather than the local area. The carer felt that it seems to present sort of housing project and, and and who’s going to administer that, for instance, who’s going to have The freehold at that particular site?

One other carer stated they came across the survey document in May, but they wasn’t aware then that the there was no provision being made for the Leo Ward and the early onset for psychosis Ward that is currently at Lambeth hospital. They felt according to the one of the therapists from the Leo community mental health team, which has been caring for the person they are looking after. That ward was the only early onset ward in the whole of the country.

The carer felt the ward was fit for purpose when their ‘loved one’ was there and the ward had an en suite bathroom. It was basic, but it was fine. It had an outside exercise area, and it was all on ground level. There was a separate male and female words with communal are. There were separate rooms for visitors to explore and visitors to meet a family members the carer felt that her ‘cared for’ had a good experience in that ward.

We also had another carer talk about their daughters experiences in those wards. The carers daugher did not go into Leo Ward and still the Carer did agree with what was said Leo was a good word. As the carer felt it gave both communal areas and it gave privacy for people as well and they had access to outside to meet each other in for games. The carer concluded that access to outside is important, and they don’t think that can be really possible in the tower block. On the other hand the carer agreed that the other wards are not fit for purpose at all. They’re dreadful!!

I mentioned it was good to hear that there is a push towards engaging the black community, particularly in the sense that certain things are just not quite getting there. I asked John that although he mentioned Black Thrive, I have noticed they are quite active in Lambeth. I continued to state that I’m not sure who’s the lead or use the contact for black thrive in Southwark, so I wondered who is contact overall regarding consultation under black thrive, be good to get their perspective in this forum.

Some contacts were mentioned, but also there might be at some point an opportunity for somebody to come and talk to us about the race equality framework standards that piece of work which essentially, is about assessing SLaM against some standards that have been set nationally.

Southwark Healthwatch mentioned in response to another carer’s concern about a blog they did. They had a previous presentation about the kind of safety of the ward and the architecture where someone asked a question, kind of related to what the carer was concerned about, which is shown below.

https://www.healthwatchsouthwark.org/blog/2020-04-30/whats-happening-lambeth-hospital-blog-southwark-mental-health-carers-forum

Conclusion

John finished up saying that they do have a communications and engagement group that was originally set up to think about the consultation processes and what material they might want to use and who they needs to engage with as part of the consultation processes.

SLaM are moving on the journey of the new build and providing samples and giving sign off really soon. So they will continue to think about how they can keep engaging with our communities in understanding what’s happening with the new build and what they are doing around whether it’s working with black men or whatever the different possibilities. SLam are going to keep engagement for the next few years.

Lambeth Lead for Occupational therapy presents

Lee Roach has been busy and presented a set of initatives regarding carers. Lee admitted that they have a particular challenge in the patient information system. Especially on recording information about carers.

So what they have decided to do in Lambeth is focus one week initially on carers as a is focused week. Lamberth are undertaking a number of different events during that week.

Lee thanked one of the carer members who’s agreed to come and talk to a couple of teams about her experiences as a carer.

When Lee was thinking about what what to do for those carer events, he really felt personally that the biggest impact on himself as a clinician is hearing the kind of narratives of people that his worked with and that usually has the biggest impact in terms of people reflecting on what they’re doing and so changing their practice. So in terms of hearing the experience of a carer, Lee think that’s quite an effective way of actually impacting change.

What Lee want to see as a result of the week’s events is a greater awareness of the resources that are available to carers that staff can refer people onto. Lee also wants to run a greater awareness of some of the resources that our staff can show carers on the wards. There also has been sign off of that they want more carers involved in the involvement register.

Breakdown of events

Lee spoke about the plan of the carer focused events. Where a carer agreed to talk to the to one of their teams on Monday so that’s the low intensity treatment team about her experience.

They are currently working across two sites. While they are working across a number of sites the majority the mental health teams are working on two sites. There will be another carer who will be talking to the team there about her experience on Tuesday afternoon.

The inpatient Lamberth inpatient care his group will meet virtually that started two weeks ago. Where they had 12 people attend that group. One of one of whom was was attending from another country. On Wednesday afternoon Lee is hosting a roundtable talk with possible Lambeth CCG, carers and Lambeth healthwatch. Then on thursday is the Leo ward community carers group. Then on Friday they are launching the ward lockers project from one of the involved carers who has been active inputting ideas.

This concludes the update for the August Joint Southwark & Lambeth MH carers forum. The September forum will have Kings College hospital feeding back updates on their Mental Health strategy.