Welcome to february’s Southwark & Lambeth MH carers forum update. This forum is aimed at those who care for someone with a mental illness. The forum gives families and carers a chance to understand the complexities of mental health and social care services.

For February, we had the following speakers who were kind enough to have a chance and engage with carers, even if it ended up as a friendly debate. Although the forum represents Lambeth & Southwark carers, membership is open to many carers outside those boroughs, because I feel carers should network, connect and learn from each other.

The following speakers for February were.

• Lee Roach who is the SLaM’s Occupational Therapist and carer lead for Lambeth inpatient wards
• Rebecca Martland who is a PhD Researcher and Physio engaging with carers on the High intensity treatment exercise
• Sam McGavin & Sophia Stevens from Southwark Council developing Southwark’s carers partnership
• Annette Davies who is a carer working towards developing stronger networks to carers including a BAME carer group.

Lee Roach was the first to talk about developments for families and carers in Lambeth. The most recent thing that was done by the team in Lambeth with an involved carer’s help, was we organized with the with the service lead for Lambeth Hospital to run their series of four sessions across the week, Monday to Thursday, each with a slightly different theme, for impatient staff teams about carers. Lee explained that they had a speaker from the from SLaM (South London & Maudsley NHS FT) carers support service who talked to the inpatient team about what they provide, partly to encourage carer referrals from the wards for people who are using the mental health services for the first time.

In the end one of the aims is for carers to be referred. Lee also explained that they had a colleague from Lambeth carers Hub give a talk about what they what provide, as a service. Plus a carer came along on Tuesday, and spoke about her experience as a carer which was fantastic. Lee felt it was probably the most important kind of experience that staff can get in regards to the carers experience. He thinks, in terms of making sure that we’re going to actually impact and change things is hearing from carers, because it just makes much more sense than if somebody like a professional comes along and talks about what they think carers can experience, it just doesn’t sink in, it’s not authentic. Lee thinks that’s the thing that carers bring when they talk about their experience.

Lee continued to explain that they also had colleagues come along and talk about SLaM’s carer champions in Lambeth. So they have carer champions on the wards and also within CMHT’s (community Mental Health Teams) across Lambeth and Southwark. So that a member of staff has volunteered to be a champion for carers in that team. Lee felt that the bare minimum SLaM can expect from them is to advocate for carers within their multidisciplinary teams to flag up if they feel that their colleagues are not taking carers into account.

At the staff sessions Lee mentioned they were talking about case studies in team decisions and also being a kind of font line of knowledge for the other staff around what services are available for carers. Plus also how to fill out information on what could be a very complicated system, (EPJS) Electronic Patient journey system, on about where to where to document things around carers. Lee continued that it’s important for us to have those things in the right place and have somebody who knows what they’re talking about in teams (E.g. Carer champions/carer leads). Lee also talked about the work being done on identifying young carers.

QUESTIONS FROM CARER MEMBERS

One carer member wanted to know about carers on the SLaM involvement register, but felt the big problem with the register is the time it takes to get onto the register, it could take over a year, and people give up and move on. Lee responded that he has control over lots of things, but unfortunately not the involvement register, but he is prepared to chase things if we know if someone is having difficulties on the involvement register. The carer then insisted if there was a way to speed up registration, because the trust could do with more carer involvement.

Another query was on if there was improvement of identifying carers for the NHS trusts patient electronic database. Lee responded, They have been working on recording contacts and monitoring how that’s been going. So on SLaMs electronic patient journey system, they have a system for recording people’s carer contacts. The staff had a target 75% for a lot of the teams and that they have done a lot of work with since September. Lee feels they are hitting kind of above 75% and some teams are hitting 90% so its that’s working out really well.

I myself queried what is the situation under the COVID climate? Especially in regards to families and carers visiting the Lambeth wards or engaging their loved ones?

Lee responded that they are not open to visitors yet. Obviously they hope that will come on the stream fairly soon. They hope to see a change but, at times they are still experiencing a number of outbreaks in terms of COVID On the wards. They are still experiencing staff sickness because of COVID infection. On the inpatient side of things, not only community, but certainly in the inpatient units. So it’s not as bad as it used to have been, but it’s certainly not a COVID safe environment to bring people into.

Lee continued to state that in relation to what I mentioned on carers accessing, or communicating with services, they have got a number of tablets on the wards that patients and carers can use to communicate. Some tablets were actually purchased when they first went into lockdown last year. Still, to facilitate communications unfortunately a number of them were stolen. So they have had to replaced those. However carers have been invited to ward rounds online and the wards certainly take on the feedback they have had from the inpatient carers meetings that they run every two weeks.

Someone at the carers forum from Southwark council was interested in SLaMs carer champions across the services, they wondered on how Lee’s team can keep them together and keep them motivated and trained up?

Lee responded that they run regular carer champions meetings. They try and bring everybody (all the carer champions from Southwark and Lambeth) together. This then gives them the opportunity to talk about what they have been doing, plus we brief them on any kind of changes that might taking place. The carer champion meetings try and pick up any issues that they might be having. Lee stressed that they do contact the carer champions between those periods of those meetings and chat and find out what’s going on via email to gather various bits of information out to them.

A carer who regulary attends the Southwark & Lambeth carer champion meetings stated they really think that the Carer Champion meetings are brilliant, because David Meyrick (SLaM Southwark inpatient carer lead) invited them to a couple of those meetings. The carer was happy to say that its really good for her to hear what’s going on within the team. She feels that carers are so important in being included and it has really helped her so much in a way that it is encouraging carers within the different groups that they facilitate.

• Rebecca Martland presents on High intensity exercise project (HITT)

Rebecca stated she was a research from Kings College and she looks mainly into exercise for service users in inpatient mental health settings. Her ultimate goal is to get more exercise facilities on the inpatient wards, because there’s a lot of evidence that it can improve both mental and physical health. So the last two years, she has been looking specifically at high intensity interval training or HITT for short. This is a type of physical exercise involving short bursts of high intensity exercise, interspersed with vast areas of complete rest or light exercise.

The exercise sessions that her project is offering are really short, they’re only 10 minutes, and then there’s a four minute introduction and a four minute cool-down. The patients are on an exercise bike in the inpatient wards in SlaM. and she is trying to see whether it’s feasible to offer this type of exercise. Last year, they ran a series of group discussions with carers for people with a mental health condition, healthcare professionals providing care on the inpatient mental health boards and patients. They managed to recruit around about 40 carers, patients and healthcare professionals to their discussions and in these discussions, we asked a series of questions on exercise and how it can be implemented in care for people with severe mental illnesses.

Rebecca then went on to give a brief overview of what they found in those discussions, the next steps in their work lead on to two main themes or ideas that emerged from the group discussions. Firstly, that it was positivity associated with the HITT exercise. And secondly, there were implementation concerns associated with the exercise. So in regards to positivity, carers, staff and service users thought that it would be a positive addition to the inpatient wards, they thought that it would help patients feel more relaxed, build their fitness and give them a break from the monotony of the ward environment because it can get boring. They also thought that the short end of the sessions that we were planning to offer would be particularly appealing for people who have low motivation and problems with attention, for example, and people interested in taking part with the thought that it could potentially improve them as mentioned.

Rebecca continued to report that carers, staff and patients thought that some groups may lack motivation to get involved in the exercise, particularly older service users, those receiving lots of medications, and those who have less positive memories of exercise. But they did, however, offer lots of different ideas to boost motivation to engage in exercise, such as just bringing music to sessions, offering trial sessions and sharing information about the health benefits of exercise. It was also suggested that getting staff to take part in the exercise sessions might be particularly useful. So besides motivation being a barrier, carers and patients thought that patient safety was another concern. In particular, for patients with physical health, comorbidities, or patients who may be a bit overweight. Rebecca felt that conducting physical health checks, and reducing the either intensity or length of exercise sessions so that they more patients can get involved. She reported a few practical issues were also noted and this was mainly whether patients have the right footwear and exercise clothes to take part, people thought that a way to get around this was to offer trainers.

Unfortunately, when the pandemic broke out, they had to stop running our sessions because of barriers with face to face contact and social restrictions in that capacity. Rebecca is now thinking of ways in which they can run sessions remotely. So they are hoping to see if exercise sessions can be done using a projector screen and people will take place on the wards and where they will be doing delivery of the session remotely. So Rebecca is hoping to resume in that capacity at the end in Bethlem royal hospital and Lewisham hospital, hopefully next month.

If Rebecca can ultimately show that exercise is acceptable and feasible, then they hope that more work in the future can look at the mental and physical health benefits of HITT. Hopefully they can roll out HITT for service users in the future.

QUESTIONS FROM THE MEMBERS

The first person to ask a question was myself due to my mother passing away at a fair early age of 64 suffering overweight problems, diabetes, breathing difficulties and knowing full well the medication was in fact slowly killing her. I felt this project hugely important because of the mortality gap (over 20 years) shaved off patients with mental illness. I felt that medication can contribute heavily to a service users physical health. So I actually asked Rebecca why is this project important? If she could give just a brief overview why it’s important to patients on the wards.

Rebecca reported there’s lots of physical health problems, especially the weight gain associated with, for example, anti psychotic medication. Rebecca mentioned people with severe mental health problems are at a two fold increase in cardiovascular and cardio metabolic conditions, such as coronary artery disease, diabetes, and obesity. And current medication doesn’t really tackle those issues. In fact, it makes them worse because of weight gain. So exercises like this is a really good, feasible, cheap way to get people involved, and to kind of combat those physical health problems. And then there’s also the added benefit, that exercise is really good for mental health. And particularly for people who may not respond to medication or people who don’t want to get involved in, for example, psychotherapy. It could be used alongside exercise.

She thinks exercises is kind of good in that there’s not a lot of stigma associated with exercise. Someone receiving anti psychotic medication, or they’re going to psychotherapy, might be less inclined to, to take part in those forms of treatments because of stigma associated with it.

• Southwark Council’s carers partnership board present

Representatives from Southwark council are hoping that this will be the start of having a bit of a presence at the Southwark & Lambeth carers group if feasible, they wanted to give us a bit of a background of the main project, and move on to talk about the partnership. They think overall, just as a general concern to the general kind of overview it is that what what they really need in Southwark is to try and join up all of shrinking resources. They want to make sure that carers have got access to support, whether it be around mental health or whether they care for old persons or somebody with a learning disability. So the project that they are working on started about a year and a half ago, which seems extended because of COVID feels like they have been doing it for about years and years. The projects intention is led by Southwark Adult Social Care, the intention was to improve the carer’s pathway through their Southwark well being hub, which is based at Southwark Academy.

They are developing a disability hub, which would be a similar approach and a similar hub within older people’s which is now called aging support. They want to make sure that the pathway between our preventative services. That kind of journey between those preventative services coming into Adult Social Care, hence those the big turning wheels, and sometimes slow wheels of Adult Social Care where you might get your carers assessment and support plan and personal budget. So that that’s the main project.

Sam and Sophia felt that the project can have a bigger scope to the point where Southwark will probably need more of an overarching strategy in the council about how they are addressing carers. Where they look to developing beneficial changes that will be taking place in the London borough of Southwark for carers. For example, they have looked at all of their carers assessment forms and support and to make sure that they have essentially modernized them and got them much more in line with good practice in terms of having good conversations with carers (rather than a tick box exercise) and how that that can fit into the Care Act 2014.

Southwark Council are thinking a lot about how they provide personal budgets to carers and looking at best practice around being a bit more imaginative and creative, and working much more in tune with carers about where personal budgets might be beneficial to them. That kind of assessment support plan on personal budget pathway is kind of really coming along. The Southwark council’s carers partnership is going to be launching all their changes in Carers week 2021, so they got a few more months. Additional they want to move towards having to thinking about how they train staff and the workforce on carers. Traditionally they have really focused on our social workers and they probably neglected the fact that everybody that a carer comes into contact with should have an equal understanding, and a shared approach to good practice around having conversations and speaking to carers. So they are trying to set up a training system, which hopefully to everybody.

So whether it’s working within one of their providers or your social workers, they will have the same training, and they are understanding good practice around carers in the same way. So that’s a really exciting kind of change that Southwark council are pushing forward. There’s lots of technical things that Southwark are doing in terms of how they are recording and identifying carers, and how Southwark is making sure that their quality assurance around the work that people do with carers is is up to scratch and that they are paying attention. So Southwark is looking at those assessments and looking at the quality of them, but also looking at the outcome. So how many carers are Southwark identifying? It is a gap in terms of knowing how to have that conversation about who is a carer, particularly around young carers.

Representatives from Southwark think there’s a lot for them to learn, but through training and development they are setting ambitious targets in terms of trying to increase the number of carers that they are going to identify, and also around contingency planning. Plus making sure that carers have good contingency plans and also working with other carers around that. All of these separate little bits of the work of developing carer’s partnerships, implementing them and seeing hopefully things can change. This will of course be monitored especially having the plan to have a much better monitoring system for making sure that change does happen. The thing that really kind of brought Southwark into contact with Matthew, and try and develop a relationship with the group for the carer’s partnership.

Carer peer representative and activist Annette Presents

Annette fedback about SLaM’s new Patient Carer Race Equality Framework (PCREF) where some events that SLaM have undertaken over February. She wanted to quickly talk about the two carers groups she has been involved in and potentially looking to start up a BAME carers peer group in Southwark. Annette then quickly talked more about PCREF where SlaM is one of the 3 national pilot sites looking to provide better mental health outcomes for the black community. With PCREF SLaM works alongside NHS England. With the two year funding and helping to implement it to make SLaM produce better outcomes for BAME communities she wondered if it is possible it will it be achievable? So she attended the series of events that SLaM ran for service users, carers and the Community from Southwark. The question is and she does know that this topic is always controversial, and people don’t really feel comfortable talking about discrimination in race, but for her, it’s very important that we talk about it because it’s specifically saying that people especially black men are detained under the mental health and their outcomes are not as good. So there is a problem. How we, how we try to improve it?

Annette feels we all have the opportunity especially to see so many of us here today to help make that change. There was she hopes will be a change because how to black people get access to get the services that they need to get even if its from the council. So it’s not only the questions that she feels we should be asking ourselves, and how we can improve it, and see how we can improve these hearing experiences on what black people are going through.

She feels sometimes the stigma of being known to be a carer, or how a carer or service users going to be treated especially by the police, how do black people approach SLaM on working together? The experiences and outcomes for all of us will be different, because we’re all different. Still Annette is really passionate about carers, obviously, being a carer herself, and working within this framework. Annette really thinks we have got a chance. She does not want this to be about tokenism. She just wants people to have honest conversations.