Category Archives: Carers Lewisham MH Forum

Lewisham Mental Health Carers forum August 2020

133Welcome to the August update of the Lewisham Mental Health carer forum. This forum usually runs from the Carers Lewisham centre, but is now run online in order to avoid carers risking COVID-19 and taking it home to those they are caring for.

As a reminder the forum is an engagement, educational and empowerment group for those caring for someone with a mental illness. The mental health, health and local authority services are complex, ever changing and sometimes risks non-involvement or coproduction of carers and patients. The forum is a chance for carers to know what is happening in services and who is responsible for them.

South London & maudsley have been very supportive of the carer forums for over 5 years and counting. Still not only our local mental health trust engages with the forums. It now seems the Care Quality Commission is interested in grassroots forums.

The forum runs every last Tuesday of the month from 1 pm. For August we were joined by carers from other trusts including those in Greenwich and others from Southwest London. The carers were interested in how this forum runs and what they could take away from what was explained there.

Guest speakers were the CQC and also Lewisham’s Clinical Team Leader for mental health community services.

We started off by hearing from Susan George who is an inspector for the Care Quality Commission. Her main work is in inspecting GP practices. The CQC look at how they are complying with the regulations of the health and social care act, but also to look at the quality of care.

The inspectors from CQC recently visited my Lewisham BAME Mental Health carer forum and although they wanted more information on inspecting mental health services, it would be strange to say that GP practices were not involved. There is an extra twist, because the forums are carer forums the CQC are interested in how GPs are recording and identifying carers.

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So for August forum, the CQC were back to observe and engage with the forums closer than before. They are interested in becoming members.

Susan has been active for about two years and the look of the portfolio of GP practice in southeast London in Lewisham. Members are interested in the organisational structure of the CQC and what departments report to who and so on.

Susan continued by mentioning they want to improve their reporting on the quality of care provided by GPs for carers in the community. She feels there is definitely some work we can do together to try to improve the narrative in terms of how we report our findings in the area. She gave thanks to Natalie Parsons, who is a manager in the hospital’s Directorate at CQC.

The Lewisham Carers forum was also joined by SLaM’s involvement lead for Lewisham and Croydon. She also run’s the Lewisham advisory group that has raised several points for discussion with Lewisham health commissioners.

Susan mentioned that as an inspector she is particularly interested in the support that GP practices give their carers. It is vital for doctors and GP practices to identify patients who are carers, and that might include young carers as well.

She thinks it’s true to say that carers have certainly been affected by the change In the way that GPs are providing consultations, such as online consultations, and that, as an inspector, she is sort of looking closely at how access to these services change for people who may be vulnerable people with illness. This goes double for carers as well. It is a real challenge, because not everybody set up with online, facilities, internet and so on. Susan is also particularly interested as well around the space of health inequalities that have started to be talked about since COVID took hold, and particularly around the health inequalities in the BAME community. So it’s good for her to get to join your discussions in the forum.

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Susan mentioned that one of the things we are trying to do is work across directorates. She feels forums like this one can help the CQC to share ideas about how they can improve and reporting on the quality of care for carers, especially when they go into GP practices, the CQC will expect to see their carer’s register. Plus the CQC will also want to see if the GPs are improving the number of carers that they’ve identified.

She thinks we do need to have more conversations within CQC. Natalie may have touched on this, and they are looking at how they can improve their our approach and methodology. So, at the moment, it’s still in the early stages. Still one of the areas has been identified on how the CQC can engage with providers to help to drive that improvement.

Questions from carer forum members

One carer was interested that the Care Act 2014 was released close to 6 years ago and feels change is not coming far enough. The carer feels that things have been going backwards due to cuts in services and local services. The carer asked Susan why are things taking so long?

Susan agreed in stating that it shouldnt have taken as long as it should. She does feel that there is real focus on it now. Its about the relationships the CQC can now build and listening to people like us and having frank conversations.

I did mention that to be fair, I do not think it’s completely the CQC’s fault, because there’s many other organizations including the local authorities. I mentioned that this forum struggles in getting a local voice because we can never find who or what is responsible for certain things.

Another carer was interested in how do the CQC capture carers feedback about the service they receive?

Susan responded that we do try to speak to people when we go on inspection and they pick up on information about how to feedback. There is also a chance to feedback on their website.

Susan mentioned that they also want GPs to publicize how carers can give feedback or leave feedback. So that we can also look at that on inspection. So the CQC will look to see whether GPs have got a system where they invite and asked feedback. If they have got posters in the waiting room, inviting carers to give feedback about the care and service they receive. The CQC can even also monitor phone calls and emails that we receive. So we’ll be looking at those quite closely.

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One carer member fedback on her experiences with her GP and how she experienced qualify of care for her and who she was looking after. The carer acknowledged that we all know the mental health is the Cinderella of the NHS. So you can see how many in all these directions that things are falling on the the unpaid carer. Susan agreed that the carer made a really good point about that sort of twofold awareness of the GP needs to have. The GP practice needs to have about not only identify with carers, but how is the carer is getting on with the person they care for

Another carer agreed that the online consultation for obvious reasons, was not going to be sufficient and a lot of people don’t know how to go online. Even if their GP sent them some information, it might not be always easy to access or to understand what the GP or drugstore have liaised with.

Susan agreed with the carers comment about how the lack of mental health focus on carers literature and leaflets. One of the things the CQC like to check when we go into the practice to inspect is that there’s lots of information for carers and that’s visible and perhaps using different languages. Susan from the CQC is also going to find out if they have an analytical team at CQC that helps to provide Some data for the next forum.

I mentioned that the way I see this forum is that carers can come together as almost as an empowerment. Besides since GPs are businesses anyway. So i would be interested to have like a list of GPs to have some rating in regards to how they are responding to carers. Plus how they engaged with them and what sort of initiatives are set aside for carers.

One more carer spoke about the difficultly she had when the surgery stated that she needed to bring her ‘cared for’ into surgery. Even though she escalated it and got through the practice manager, the surgery still insisted they couldn’t do anything due to confidentiality and this led to prescription issues.

Susan stated that they’re not allowed to ignore complaints and that they need to acknowledge your complaint within probably a couple of days, and they need to investigate it. Because when a patient complains, or when somebody complains to practice, it may well be that there are elements of how they provide a service that are actually falling short, and they’re not going to improve unless they investigate.

Susan raised an example of that learning can be shared with members of staff involved, and she felt you should definitely continue to raise that complaint to the GP practice and they should acknowledge your complaint and also give you a sort of timescale about how they’re going to investigate. The CQC always encourage people to complain directly.

General Manager for mental health in communities discussion

Stephenie Edwards introduced herself to the forum as the General Manager for communities. They are in the midst of and have been for some time of actually starting to transform some of their community services. Over the years Stephenie has been attending some of the carer forums, but she is retiring now. So it will be the last time that we actually see her at the forum.

Stephenie continued that they were starting on creating pilots last year and they have been going out to service users and carers just to actually gain some views and thoughts. One of the things that was brought up was around waiting times, for both clients and carers. What they have done is that they were changing around their front end about services, particularly in that where they were splitting their services into neighborhoods. They piloted the split initially from last March 2019 for neighborhood 1, and what used to be their assessment and liaison service where people can be referred by GPS, is actually now based within the Waldren GP centre in Depford, and so their nurses are Mental Health advisors, application specialist OT, social workers based on site.

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Patients also go to other GP practices and they have what’s called a very quick triage. So GPs can request a service as soon as service users couldn’t be contacted if things were urgent within 24 to 48 hours.

Stephenie stated that they started in March two weeks into their pilot, but unfortunately they were hit with what the what the whole nation is dealing with the COVID-19 pandemic. This disrupted their systems and all of their plans. Still to some extent we were adaptive because they created groups to run from different sites and services, but at the moment, you can’t work face to face with people in group settings over time. To in some cases, online and the OTs are trying to work out other ways of working with service users that are face to face.

It was suggested by SLaM that the team launch another pilot for neighborhood three in Lewisham. Stephenie mentioned she was excited to say that she is going to meeting after this where they will be saying whether it’s safe or not to launch, neighborhood three. She anticipats it will be safe and start launching the day after the carers forum. The team have a new staff interface, that is a challenge to the launch. So what they have found Is that Deptford which is north of the borough is very different to South of the borough of Lewisham. One of the reasons is there are different communities there that they had to get to know in terms of meeting patients, but they are going around GP surgeries and asking if they can have some space to see people on GP sites.

Stephenie made a point that lots of people in the past, potentially felt stigmatized, by coming into community mental Health teams, we would have as much as possible we can see people just coming in for services within GP practices where you know, where where we can get, I think, any available space in GP surgery premium, but that’s what we’re hoping. And, and we have expanded or we’re in the process of psychological interventions for service users.

She feels this is a big thing because service users have told them for a long time that there needs to be more psychological intervention. And she thinks as it stands at the moment, we’ve increased our psychological retention by 15 new posts, however not all the people are in those posts at the moment, but they are recruiting to run the adverts are out. So there’ll be a lot more psychological intervention available.

That might be quite short term intervention or some longer term intervention, but it will be a standard model of care. So people will be assessed when they come in. And then from that assessment, it will be decided and agreed to what care plan and what an intervention would be best at that time for that person.

Traditionally, Stephenie’s team worked primarily with care coordinators who are managed care of a number of people, maybe 25 to 30 people. What she is having trouble with is actually recruiting nurses. And that’s been ongoing for the past four or five years. The thing is they have a number of vacant posts that they haven’t been able to recruit to repay agency costs equal to a higher premium. So when they have started to look nationwide, about how they can do things differently.

Questions from the carer members

One carer member was interested on who Stephenie’s successor would be. The CQC were also interested. Stephenie stated it was someone called Wendy Dewhirst she currently works in Southwark at their acute referral center. Wendy has worked for SLaM for a long time.

Another carer gave a suggestion that because one of the major things as people with mental health is, if they know this, their benefits is going to be stopped. It doesn’t take a genius to work out and it would send them spiraling. Some of them could end up being sectioned. That’s how bad things have got. Could you please have a specialist for PiP forms within the mental health team.

Stephenie explained that Bromley, Lewisham & Greenwich MIND are employed to help on this and they work with them. She mentioned they do a lot of work around benefits and are very skilled in it. They have also got vocational support staff and a lot of service users that they work with. Vocation workers themselves are absolutely experts in benefits, but the demand is so high that they can’t do that all themselves.

The carer replied that in the past a service couldn’t get help on benefit forms and that person just gave up. She knows it’s impacting mental health survivors and she knows this is going to have a knock on effect on service users which cause their mental health to deteriorate as well. Stephenie did admit that it’s going to get bigger with service users being furloughed maybe in October not having a job to go about, but she feels that’s where their vocation specialists will do all they can to help people retain their job.

Other carers are continuing the raise the matter of carer support workers, especially some years ago 2 SLaM carer support workers were lost and now no one has any understanding of carer support numbers. Stepehenie mentioned that a new carer support worker role will be introduced and mentioned this was a drive by Lisa Brian who heads adult social care in the borough. Denise O’brien is at the point of recruiting the carer support worker and they will be working with on strategy for carers in Lewisham. These adverts are going out either imminently or going out over the next four weeks. So it’ll probably take at least two to three months before carer support worker is actually in post. I requested that the advert also be sent to the group so carers can see what role the carer support worker will be employed for.

Another carer was interested in how community mental health services in the Borough of Lewisham were taking into account diversity issues of carers. Stephenie agreed that this should be a remit for all services across the country. She continued by stating Donna Heywood Sussex who is Lewisham’s Service Director has taken BAME issues very seriously and they are in the process of producing a BAME strategy. Plus they also have Leonie Down who is Lewisham Head of Occupational Therapy and Safeguarding Adults Lead working to engage the community and also get staff involved in the BAME strategy as well. She did state its worth asking Denise O’Brien to attend the forum to speak to carers about any carers strategy, but over the 5 years it has been difficult to get any insight into carer initatives in Lewisham and carers are wondering if there is co-production at a local authority level.

It was good news that the involvement lead will try again to get Denise to attend the forum and speak to carers about any initatives and we are really hoping things will be different this time. Lastly there was an update from Jane Lyons who is the involvement lead on getting patient systems to talk to each other. These being of patient records by with SLaM EPJs and GP patient systems.

This concludes the August update of the Lewisham MH carers forum. Next month 2 mental health trusts are to send their carer support leads to educate carers about the importance of carer peer support their carer peer support strategies.

Lewisham MH Carers forum July 2020

Lewisham Ward MapWelcome to the July edition of the Lewisham Mental Health carers forum. This is one of the carer forums I run in order to help families and carers understand, engage and query mental health services. This can help services become more carer aware and aides in a working relationship with carer’s.

For the Lewisham MH carers forum we were joined by regular carer members, plus Damian Larkin a nurse working on clinical systems. The forum was also joined by Karen Machin a carer peer network campaigner and researcher, plus the communications rep from mental health organisation SANE, Public Health in Lewisham, Maudsley’s complaints department manager Edith Adijobi.

Also in attendance was Beth Brown who is SLaM’s Patient Experience and Quality Manager. We were also joined mental health lead of the Lewishmam & Greenwich hospital trust and lastly the involvement lead for Lewisham & Croydon from maudsley NHS trust.

The Lewisham carers forum runs every last Tuesday of the month and is usually run from Carers Lewisham, but due to the covid-19 outbreak the forum has been running online.

Public Health Lewisham research

First to speak and update carers in Lewisham was Lisa Fannon from Public health in Lewisham. Lisa gave us a brief update on the work that she talked about at another forum I run. Lewisham council is undertaking in a research partnership with Birmingham City Council where they are going to look into health inequalities faced by black, African and Caribbean communities within the borough. Public health Lewisham are part of this process and will be looking at the evidence which have been some of the key issues affecting the community.

Their intention is that they will provide some solution focused approaches which will enable us to tackle such health inequality issues wherever possible. Lisa also wanted to let us know that they are this week opening applications to people within the community to support an advisory board. Lisa mentioned it’s a unique volunteering opportunity to be part of a groundbreaking piece of research that will inform the work that Public health are doing within the local community.

Carer Peer Support

Next to present was on carer peer support networks. Karen who is a peer network speaker spoke about her personal experience of being a carer. She also spoke about the challenges she found on the mental health system and felt being able to sort of stand back and reflect on things.

She did value the networks that she had made when experiencing mental health systems be it locally, regionally and nationally, she had some networks where she could share them with people and hear about what other people have been up to. Karen found those networks really helpful.

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The last 10 years or so, her interest has been around recovery and peer support in a way of focusing on healing and discovery. She mentioned that she doesn’t really like the word ‘recovery’ when compared to carers. Even though it is a word that everybody uses, but she is still interested in recovery because it’s always about the people that we support.

She felt that the focus on recovery is always about the person who’s using mental health services. It’s not necessarily about carers. So she did a write up some years ago about it, but she still think it’s a topic that signals whenever there’s recovery then it might not be for carers and everything could be patient focused.

Karen wants carers to query things by asking about the nature of carer support.  Questions like ‘What is it?’ What does that look like for carers? And how do we get current skills involved in that? Her main interest is around peer support, and that’s about people supporting each other.

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She feels that even with all these new initiatives around peer support, that carers sometimes still get ignored.  Around 20 years ago, we were asking for what would now be called a carer peer support worker. Unfortunately she does not see many carer support workers, although there’s lots of initiatives and resources and money going into developing peer support workers which are roles within mental health trusts and voluntary sector organisations.

This is not the same issue around carers. She always wanted to hear from somebody who’d been in a similar position when she was caring, who could kind of use their own lived experience to the listen and support carers. Perhaps somebody who was actually paid in such a role and also was valued and supported themselves.

It’s not just about peer support, it isn’t just about volunteers. It’s also about the resources going into paid roles. We in a situation today that we are trying to avoid the new pandemic. She feels that it has created a really abrupt change. It’s been a very serious and traumatic time for many of us carers. That means everybody even those not accessing mental health services. For the whole population it has been very difficult time. The pandemic certainly has highlighted places where there’s been poor services or poor access to services. Karen felt some criticism at the NHS, but she is usually very supportive of it, which has really highlighted some of the challenges in service provision within mental health.

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Karen also wondered about bereavement services and support for carers among such services. She felt that people have looked for access and support, but Karen mentioned that people have also had to look to communities for support.

She does not think they’ve looked particularly to the NHS and because it has been so overwhelmed with other issues. So people have had to look for that mutual aid into communities.

She included in her talk the use of remote access on how communities now can be national and international, and that is certainly a community that she wants to be  involved with. She recently managed to speak to participants from around the world and heard from a lot of peer support groups where they’ve been questioned whether people can join them. There have been lots of people from the States and from Australia so networks and communities are getting bigger because of the opportunities of remote and virtual platforms coming from avoiding COVID-19.

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Karen stated to the carers forum that perhaps maybe this is an opportunity to do things differently. She knows that commissioners and providers are all asking us those questions of how we’re going to provide things going forward. When she talked to them she keep repeating herself and saying we have to listen to people with lived experience and their carers. Karen felt that’s something that’s been high on the agenda for the last 10 to 20 years anyway and felt providers and commissioners know that they have to listen to communities, they know there’s a gap between what they commission and what people experience.

Lastly Karen spoke about how our communities can help us to get heard and questioned how do we build those communities? She felt it needs to go beyond local. She mentioned that those at the forum are in a great position in London because we have got opportunities that go beyond just our own Mental Health NHS trust into other mental health trusts. We have a chance to hear about how others are providing services and the different teams that are available.

She does wonder how we can expand this nationally because there aren’t any national networks of carers in the UK. She would like to hope in the future a way to develop national carer peer networks and once COVID-19 is over, then we can start to develop those networks ourselves.

Questions from the carer members

The carer members from the forum were inspired to ask questions to Karen. One member asked what was she doing for older carers in the role she is in at the moment, especially with ethnic minority cares? The forum member wanted to know who at the moment could explain the situation of suffering in silence because of stigma?

Karen mentioned that she has not got the expertise around older carers in her local area, But she has heard of lots of other organizations, not here, but around the country, where carers and communities are coming together to provide that support themselves. She understands about those worries about what happens if a loved one goes into a care home? And what’s that going to mean for us? And so people, it’s about, it’s what she has been hearing, it’s about communities doing that work. And that really worries her in many ways, partly because the sustainability of that, how do those local just groups of neighbors basically, and how do they sustain that effort? And how do we scale that up? How do you make sure that that continues?

Another question raised was from a carer who had read in The Guardian newspaper that Boris Johnson is considering amalgamating social care into the NHS. She felt in principle, I think it’s a good idea. But what what concerns her is that does that mean that’s another group getting that is going to push mental health out of the way? Because Health services has made mental health services a Cinderella service and now social care will make it even more irrelevant.

Karen responded that we got to keep an eye on such things and she felt it’s through networks and making sure that we’re all connected within that we can keep an eye on. Karen did agree with the carer and felt perhaps the change could potentially be fine. It could have potential. Still she thinks many will be worried about that gap between health care and social care.

SANE new campaign and project

Next we heard from Emma who is the media and communications officer at the mental health charities SANE. They are a national mental health charity. Emma felt it was a real privilege to hear from carers and to learn from us as well. She thanked us for having her in this space.

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Emma introduced herself as the media and communications officer for SANE and they are working on some exciting projects although she could not go into detail at this moment in time because it’s still in the planning stage. The campaign will be launched around autumn time and they are looking to collaborate and work with caregivers, mental health caregivers who care for someone with serious depression.

Emma continued that supporting mental health care givers is also a core campaigning area for the charity and she knows it’s something which SANE’s CEO Margie Wallace is really passionate about. So if there’s anything that SANE can do to support us or if we know if anyone’s interested in reaching out and working with SANE then please do get in contact.

Patient Experience and Quality Manager presentation

Next to speak at the forum was Beth Brown who is SLaM’s Patient Experience and Quality Manager thanked me for inviting her. She was here to talk a little bit about what she does as patient experience and Quality Manager. She then talked a little bit about one of her work streams, which is the patient and carer feedback surveys. She mentioned her role has kind of two main aspects to it. The first one is around patient experience, so she manages the trust wide patient care experience survey program, which some of the group might have heard of which is called PEDIC. Beth also look after the Trust’s participation in any national surveys which are run by the Care Quality Commission. So that’s the means that they participate regularly each year is the National Community Mental Health Survey.

It is her role to look at the themes that come out from all of these places and, and try and kind of track trust wide themes. And that can help inform our services, and to kind of look at their local improvement because the whole point of it is that we can improve services.

Beth moved on to talk about how she manages clinical audits and the effectiveness team. They look after a program called perfect Ward, which is a way of tracking clinical audits throughout the trust, which includes things around clinical safety, medicines, infection prevention control. They also have an audit around patient experience and staff experience. Plus they also have someone in the team look after NICE guidelines, so you can have best practice for trusts and national clinical audits which are run by the Royal College of psychiatrists.

Collecting data

At this moment Beth’s team are just preparing for a upcoming National Audit on early intervention in psychosis. Beth started showing the forum presentations from her slides. Where she showed how centrally important that audit team works with the patient and public involvement leads and on complaints.

Beth tends to have a large spread of different people to work with, she went on to why a patient care experience feedback is important, because so they can see what we’re doing well and what we need to do better so that we can improve the services and deliver the as possible care. Plus they need to collect feedback in a lot of ways.

They have kind of lots of more systematic and structured ways of collecting feedback, where Beth showed the data the team  collect it from a trust wide level right down to individual team level. From on the Ward and the NHS friends and family tests, through to kind of trust, consultations and engagement. The team also work through complaints, PALs, service formal and informal effective compliments, a kind of like individual project based feedback.

As Beth showed us her graph and she explained top left graph which is around on the friends and family test score in Lewisham. There was also the national indicator for patient experience. The aim of the graph is what extends as and so what this chart is it tracking the number of positive responses to that to the people that say they’re extremely likely or likely to recommend the service they’ve received.

And there’s tracking over time from April 2017. And you can see from around January 18, to may 2020, if you put a line through it, it’s a very gentle increase in performance. And that reflects trust wide performance. However there has been a significant change, due to this massive dip in June 2020. That is the impact of COVID-19 on our data collection. They had two of our data collection methods suspended due to infection infection control. And now got two out of three open and but we had a massive drop in response rate. So it’s the two that means that the fewer responses you have, the more the data is influenced by extreme responses.

So the forum was shown data for Lewisham over the past year and the members were told that the team had overwhelmingly positive responses, and those numbers of 1169 and 21015, their response rate, so that’s the proportion of positive in comparison. Beth reminded the forum that I was interested in hearing about the FFT school, by ethnicity and by ethnic group. So at the end of our PEDIC surveys, they asked a number of demographic questions and the purpose being that they could see whether any particular groups are reporting different experiences. And that can help inform different work streams.

So for example, there’s just been a piece of work that we found in Lambeth where LGBT patients were reporting poorer experiences. there’s also a trust wide quality reports, which you can get on SLaM site website, which talks about FFT scores.

A piece of work that Beth is doing at the moment, is to allow her to look at positive and negative test results by ethnic group over around 25,000 participants so that they can make more data and say something more about the database quickly to see what it is telling them.

Questions from the carers forum

One carer who is often interested on where mental health services get delivered queried the actual number of people accessing treatment. If it’s a positive outcome, obviously, it’s very good. But that doesn’t necessarily mean that mental health services are delivering good services. The carer felt that SLaM are missing delivering service to the people who struggle to access services via their GP. because sometimes there’s subjectivity as to who goes through and who doesn’t. And as we all know, there’s also financial constraints. And also people who, who don’t feel comfortable with a GPS, therefore can’t get a referral, even with their carer is trying to get their relative to access services.

Another carer agreed and felt it was one of the most stressful things that they found as a carer and that they belonged to several carers groups noticed several people have said this, that it’s it’s especially with children anyway, as well. It’s not so much having the child or the person with the mental illness.

Beth responded on member’s experience of their loved one’s difficulty accessing services and the impact that has been. She continued to mention that they are hearing about that in our patient surveys.

So even the people that are accessing our services are talking about the difficulty that they’ve had to get it and the impact that’s had on them. That is kind of growing in prominence as the you might have seen over the past couple of years. It is an issue and it’s it’s an issue that the trust is aware of, and there are lots of workstreams and programs going on across the trust to tackle access to services, not least Since COVID, so since since before that as well.

BETH application presentation for service user and carer input

Next speaker at the Mental Health carers forum was Damien who spoke about the revamped online patient system called BETH. BETH is an online app and what it does is connect patients or service users peers and staff, they can communicate, they can collaborate. And it’s not an app because it works through a web browser.

Still BETH does it look and behave like an app what’s known as a web app. To access BETH the address is beth.slam.nhs.uk . Since this is a new digital online platform it connects us and it supports the service user’s the treatment that SLaM provide. Damien mentioned that because of COVID-19 that we all have to try just try and communicate in different ways not because it just hasn’t been possible to do what we have done previously, its just BETH really supports this.

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BETH takes its name from bethlem and which is the Bethlam hospital that SLaM have in new Beckenham and also the museum of the mind. SLaM’s vision is that BETH will support the care treatment that people receive. Damien then showed the forum some presentation slides of BETH in action. Damien showed the carers how it looks like on a mobile phone. BEETH can be used on a mobile phone, it can use on a tablet and it can used on any kind of device like a laptop, or a desktop.

Damien also showed how service users or patients signup to BETH and how they can securely message the care team, they can also get access to their care plan or consider upcoming appointments. Patients can keep track of mood and sleep and they can use the free online resources that SLaM have included in the BETH online system.

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Service users can choose to use certain functions and also carers can choose other BETH functions. There’s more in there for patients at the moment although SLaM want to do obviously develop on this. Damien then showed us how to register for the BETH system in instructing on where to sign in if your patient of services by you putting your first and last name as it appears on SLaMs records.

You would then just put in your email address and you create a password and that becomes your login details for everything. But then in the middle you see that red box there’s two tick boxes, one to indicate if you’re patient one to indicate if your carer, family or friend.

if you’re a patient, the two other boxes appear saying asking for date of birth and NHS number and then they accept the terms and conditions all of that and you get access. If you click on the second box there to be a carer or friend. Once you hit on create account, it’ll ask you if you want to connect the care team of the person that you care for. And you just need to put in the person’s name full name as It appears.

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Complaints department Presentation

Next we had Edith Adijobi who is SLaM’s complaints manager to engage with carer members at the forum. When you think of complaint’s carers tend to grit their teeth, but I noticed the members were happy to get engagement from complaints because people feel complaints tend to hide away and defend services. Edith opened up her talk by stating that she genuinely love complaints. I noticed one or two carer’s laugh about this, but then they warmed to Edith.

Edith mentioned that she has been working in the field of complaints, panels, patient experience and bereavement services in the NHS for about 21 years. She is very passionate about complaints. So in the trust people sort of have to stop her talking. Edith mentioned that she is also known in the trust for a lot of pushback, because one of the things that frustrates her deeply is if she ever hears somebody say there’s nothing they can do, then Edith feels that carers have to complain.

Edith feels that people shouldn’t ever have to complain to feel heard, she feels people shouldn’t ever have to complain to feel that services are going to do something about something they flag to SLaM. That doesn’t mean services stop people complaining. But if we’re telling people that the only way we’ll hear their voice is if they complain then something’s gone very wrong, and that really frustrates Edith.

Edith does staff training on complaints, So one of the things when she does on training their staff is she is officially their worst nightmare at times. She mentions that officially she acts as a worst nightmare as a patient. Edith then took us through some brief data. She talked a little bit about why we take complaints as a trust and the approach that she finds

She feels it’s about really encouraging and supporting ourselves to think about doing the right thing at the right time, really reflecting on on the information we get. And how do we learn from mistakes, because she thinks the moment you say the C word, as she says complaints, people get their backs up, people get quite anxious. How about we split it into a concern and a complaint? what is actually happening there? What are people trying to tell us? And these are some of the ways in which we get information.

Edith talked to carers about the different organisations that are interested in the types of complaints the NHS Trust gets.  So they get reports from the Care Quality Commission, quite a lot of our patients will go direct to the CQC and to then pass them to us. We also get views from Health watches, SLaM’s CCG commissioners, we even get people tell us first What do we do and how do we did Last year.

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Edith spoke more about the charts on the presentation and showed how these are the complaints they got as a trust. Although in one month the figure obviously dropped really sharply because of COVID. Edith showed us a closer look at Lewisham complaint figures and noted if we could see my mouse just scrolling under the Lewisham accounted for 88 out of 558 complaints pulled up through the Directorate.

She then looked at complaint, which was commissioned by Lewisham. So that will go across SLaM’s oldest adults and their CAMHs service, but this was just to give us a trust wide look. Looking across the trust, if you have a look at the Reds or the complaints and the blues are compliments.

Edith moved on to mention that they have tried a new system since last October. They are encouraging people to record directly so that we can actually capture information. So just that was an April to make a March this year. This is this quarter, and you’ll see that a bit had a real impact on just SLaM’s organizational numbers they receive.

Edith mentioned that sometimes it’s just somebody picking up the phone and not being able to get hold of a doctor, not being able to get hold of a nurse, or, in some cases, people wanting access to a service. But the commissioners haven’t actually commissioned us to provide that service. So how do we as an organization feedback to the CCGs or how do we actually tell somebody that what they want is what we Provide that’s not being provided by a third sector partner, or the CCG has different arrangements.

Edith concluded that sometimes we’ve got those type of issues going on and sometimes someone is to blame. Sometimes when something is wrong, it is because of there is a reason. So one of the things maybe we want to look into is culture of the trust. Is it that we’re blaming that member of staff, and that member staff is the one who’s accountable because an appointment failed to be booked? Is that staff member under too much pressure or not supported? What is the cause?

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Carers from the forum were surprised, but happy to have a presentation from the complaints manager since the forum has existed for many years and the subject of complaints is often raised.

Lewisham MH Carers forum June 2020

133Welcome to the June update of the Lewisham mental health carers forum. A forum aimed at unpaid carers supporting someone close who has a mental illness. This is one of the 4 carer groups that I run per month. In attendance were our usual carer members along with representatives from Lewisham Healthwatch. The speakers from South London & Maudsley NHS trust being psychiatric Liaison staff and the lead from SLaM Patient Advice Liaison service. We were also joined by SLaMs involvement lead for Lewisham and Croydon, plus we were also joined by the Mental Health Lead of Lewisham and Greenwich Hospital trust.

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Lewisham MH Carers forum May 2020

Welcome to the month of May’s update of the Lewisham Mental Health Carer forum. This is one of the 5 carer groups I run once a month to give carers a chance to find out what is happening to health, mental health and local authority services aimed at carers.

For this month we were joined by South London and Maudsley’s Associate Medical Director Dr Zain Sadiq who is also a psychiatrist. We were also joined by Lewisam’s Wellbeing Map coordinator Tim Bradley. At the forum we had a number of carers as well as carer champions, the modern matron from SLaM’s Ladywell inpatient wards. We also had in attendance the SLaM involvement lead for Lewisham and Croydon as well as Carers Lewisham staff and a representative from POhWER mental health advocacy.

I explained the reasons for the forum being the following.

1. It can be difficult for Carers in Lewisham have an idea on MH services and influencing them.
2. MH carers need some empowerment in their role.
3. Services have suffered from cuts, carers need to act in order to support everyone.
4. There needs to be an engagement platform for carers to discuss issues.

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Lewisham MH Carers forum April 2020

133Welcome to the April update of the Lewisham Mental Health carers forum. This is one of the several forums that I run in the community aimed at carers who look after someone with a mental illness. The forum is not a support group since it focuses on carers engaging with health and social care services. I feel there is a lack of carer led forums where carers can come together and seek engagement, information, co-production and querying of health services.

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Lewisham MH Carers forum February 2020

133Hello fellow reader. Welcome to the February edition of the Lewisham Mental Health carers forum. Each of the 4 MH carer forums I run focus on mental health service engagement for MH carers. The forums also seek engagement, updates and involvement from other parties, but usually mental health services come first.

For the Lewisham forum with thanks to SLaM’s public and patient engagement lead for Lewisham & Croydon, we were delighted to have in attendance SLaM’s Lewisham Quality Improvement clinical Nurse.

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Lewisham MH Carers forum January 2020

133Welcome to the first Lewisham Mental Health carer forum of the year. Before I do a brief update of how the forum went, I must say thank you to Carers Lewisham for hosting the forum for almost 6 years. As a carer I often mention to fellow carers that we must support our carer centres. Without carer centers then it is harder to keep the profile of carers at local and community level. Carers need that safe space, access to activities and a place for support. I am aware that so many carer centers are struggling due to lack funds, staff and resources, but my respect for the ones that keep fighting for carers will continue.

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Lewisham MH Carers forum November 2019 update

Mental Health Open ForumWelcome to my quick update of the Lewisham Mental Health Carers forum. This forum runs usually on the last Tuesday of the month and runs from Lewisham’s Carer’s centre. The forum looks at the issues affecting unpaid Mental Health carers in the borough of Lewisham and sometimes further beyond.

The forum does not look into the mental health of unpaid carers, but the situations of families and carers supporting someone with mental health needs. A bit more about the Charity ‘Carers Lewisham’. From their website.

Carers Lewisham provide a range of services including advice, information, emotional support, breaks, opportunities to meet other carers, relaxation days and well-being sessions, coping strategies, specialist support for parent carers, carers of people with dementia, carers of people with mental health problems, older carers and carers who are caring for someone nearing the end of their life.

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As you can see, families can have complex relations and unpaid carers are no different, unpaid carers need that support, but they also need empowerment. This is what the Lewisham MH carers forum tries to provide.

The Lewisham Mental Health Carers forum runs once a month, just like the other 3 carer forums I try run. All MH Carer forums run in South London, but do not be fooled into thinking I just run forums since my activities spread much further than that, e.g. helping out Mental Health carers in other boroughs where mental health NHS Trusts have some idea of empowering unpaid carers in their area.

A first for the November forum was the use of a telecommunications application called Zoom, which allows unpaid carers to attend the forum via Video Chat. I am still trialing the device and checking out the hardware, but I have made it clear to members that I am happy to train them in usage.

Updates from Healthwatch Lewisham

For the November MH Carers forum, we were glad to welcome Healthwatch Lewisham.

Healthwatch Lewisham is the independent champion for people who use health and social care services. They exist to ensure that people are at the heart of care, and they listen to what people like about services, and what could be improved. Healthwatch Lewisham share their views with those with the power to make change happen, that being the Local Authority, CCG or those who provide services.

Marzena Zoladz who is Healthwatch Lewisham’s Involvement and Projects Manager has been actively engaging with both the Lewisham MH Carers forum and the Lewisham BAME MH Carers forum. She was there to update the members on Healthwatches Intelligence report, which is about a summary of reports and actions that have been undertaken by Healthwatch, including information on what they are currently working on, what work they are planning and updates on work they have previously undertaken.

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Most of the members have already read some of the latest reports are queried Marzena on why some reports are not highlighting unpaid carers, but in the future Healthwatch wants to develop stronger links to families and carers. This is something the forum is looking forward to as many feel that those who they care for is at the mercy of the health services.

You can look at more reports from Healthwatch Lewisham show below.

Healthwatch Lewisham Reports

Other queries from members were on the lack of figures and stats from the Local authority and from SLaM, many feel that SLaM Quality Improvement has a huge part to play in revealing statistics. A big query came from a member concerned that access to services via primary care is severly lacking. They feel secondary care focuses a lot more on those who have managed to use the mental health system, but those outside the system, it will be a hard struggle. There is dismay that Local Authority will be taking over more services in the area, which means it will be harder to raise queries to healthwatch.

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Marzena was kind enough to give out information leaflets, booklets, forms, pens and hygiene kits. The forum members took a few forms to feedback information from other services.

Updates from SLaM

Also at the November forum, we were joined by South London & Maudsley NHS Foundation Trust’s (SLaM) Involvement lead for Croydon and Lewisham. Plus we were also joined by SLaM’s Head of Nursing. Before I continue, a bit of info about SLaM. Since some people think they are some trend for a basketball team.

South London and Maudsley NHS Foundation Trust provides the widest range of NHS mental health services in the UK.

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They also provide substance misuse services for people who are addicted to drugs and alcohol. Their services include the Maudsley Hospital and Bethlem Royal Hospital. They also work closely with the Institute of Psychiatry, Psychology and Neuroscience and King’s College London.

They are supported by Maudsley Charity and are are part of King’s Health Partners Academic Health Sciences Centre. You might notice off my Southwark or Lambeth forums NHS Staff turn up from King’s NHS Trust or Guys & St Thomas Hospital to engage with unpaid carers.

We had some good news from SLaM’s involvement lead as they have a new inpatient Modern Matron, who I will be closely working with in the new year. There will also be a community carer’s lead for the borough, but again this might be something or the new year as a lot of carer issues are out in the community.

There is a plan for SLaM to set up a support group probably on the wards, which I feel would be great even though I am already setting up carer-led peer support groups in several boroughs. I really hope the development of the SLaM carer’s support group involves ideas from the Lewisham MH Carers forum.

This wraps up the brief update from November’s update of the Lewisham MH Carers forum.  I can see Lewisham Carers becoming more festive as I await any Xmas party from the Carers centre.

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The next Lewisham MH Carers forum will be in January for the new year.

Lewisham MH Carers forum September 2019 update

133Welcome to the September update of the Lewisham Mental Health Carers forum. I guess you might already know, that I facilitate two carer strategy forums in the borough of Lewisham.

 

 

However one of the forums focuses more on BAME queries/issues with families and unpaid carers. The one that runs at Lewisham Carers tends to focus on unpaid MH carers as a whole.

Mental Health Open Forum

Just as a reminder, the term ‘mental health carers’ refers to unpaid carers supporting those with mental health needs. I know not many people are happy with labels, but on some level it just helps with identification and at best helps to lessen isolation as people know they have something in common with each other.

For the September Lewisham Mental Health Carers forum, we were lucky to have Lewisham’s latest mental health Champion James Rathbone, who is also the Labour Councillor for Lee Green. As unpaid MH carers, we were also joined by South London & Maudsley’s Quality Improvement QI Facilitator. It is important NHS mental health trusts engage with families and carers at grassroots level.

We first heard from Cllr James Rathbone who has lived experience of mental health. He spoke about how he became a mental health champion and why he would like to make a difference in the community regarding mental health needs. Not every service user can speak out when addressing mental health issues and it helps when someone is high profile enough to raise mental health at important meetings.

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James specified he does not control how Lewisham health services run, but he will bring mental health to attention when the issue arises. It is important that a mental health champion gets out and engages with the community. It is important to hear what the community says about the issue of mental health needs. James raised the situation of mental health needs from the BAME community and felt there needs to be more priority due to a high level of BAME using mental health services.

James was critical with the term ‘parity of esteem’, because he felt the term itself does nothing to address the real issues. He felt the main issue was funding and the new term should be ‘parity of funding’. He felt what are services bringing to the table? It is easy to talk, but funding matters in the end, plus how the funding is used.

James talked about the big launch of the Lewisham suicide prevention strategy held on the 11th of September 2019. I am not fully aware of the suicide stats in Lewisham or other London boroughs, so it would be interesting to chase that up. Especially since I am a carer member of SLaM’s suicide prevention group.

The next and last point raise by Lewisham’s Mental Health Champion was on how Families and carers can be involved in shaping Lewisham’s mental health services. I asked this query, because families and carers should feel part of the system, they should have their views and experiences taken into account and feel empowered they have the chance to be involved.

James spoke of how carers can become members of their NHS trust and have a greater say on what is going on. James spoke that we should pay attention to what SLaM governors are doing and try query what they are involved in. James mentioned that Lewisham CCG have their public reference group, which allows for involvement and it helps to understand the important health policies affecting the community.

We were glad James mentioned the important Lewisham stakeholder event on the 14th of October, since members of the MH Carers forum will be holding a workshop there about carers.  The link has been added below.

https://www.eventbrite.co.uk/e/lewisham-mental-health-stakeholder-event-me-and-my-community-tickets-72248203321

On the 16th of October will be Lewisham Child & Adolescent event, although not sure where it will be.

Some questions from the forum asked at James were on the merger of the six CCGs, the use of the Joint Health and Safety Committee and James returning for the Lewisham BAME forum.

Next up was Aaron Brewer who is SLaM’s quality improvement facilitor. Many NHS trusts around the country have quality improvement projects to work out how to improve services for patient and carer (yes, thats right! carers also use services). They want to ensure that the people that access our services experience the same standards of care no matter which borough they live in or which service they com are under.

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Aaron spoke about SLaM’s Inpatient Care Process Model. The model is broken down in to six phases of an admission. Lewisham are currently implementing three phases. The decision made to admit and first 24 hours, First 24 to 72 hours in
hospital and Final discharge preparation and discharge.

The model is broken down in the following sections.

– Decision made to admit and first 24 hours
– First 24 to 72 hours in hospital
– Getting better
– Getting ready to leave
– Final discharge preparation and discharge
– Staying well

Aaron then spoke about Lewisham’s Hospital patient system ‘I Care’ and how data can be used to focus on quality issues and quality behaviour. The group were shown some graphs and quality data to help educate members on how hospital data can help make decisions. We were shown nothing confidential, but numbers and figures. It was pointed out that the graphs look very complex, but I always stress carers MUST get used to poking their noses on data and quality. We need to understand how NHS systems work and how they make decisions on services.

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The following graphs were shown on

Hospital Length of Stay
Discharges by directorate
Readmissions within 30 days
Admissions and Transfers into External Overspill

The next discussion was on how the Hospital’s patient system can help in improving care and outcomes. These will follow on from the Red2Green tool. The Red2Green is a tool to aid daily multi disciplinary team decision making to ensure that every day spent in hospital is meaningful and contributing to a person’s recovery. Red2Green was developed in an acute general hospital but has since been adapted for mental health settings, multiple NHS trusts are now using it and having success in reducing unnecessary delays, length of stay and bed occupancy.

The Ladywell unit based at Lewisham hospital has several mental health wards. We were shown how one of the wards operates in regards to the Red2Green tool. The ward chosen was the ‘Powell Ward’, where we were explained the following

180 Green Days and 4 Red Days for 18 patients in August.
No Delayed Discharges.
Targetted Theme: Awaiting Social Services

The last part of the discussion was on Standard Operating Procedures (SOP). The aim is to agree Standard Operating Procedures (SOP) to unblock common barriers to discharges between community and inpatient services. The more I looked at who was involved at the SOP, the more my head began to spin because I felt they need to engage with the forum somehow or the risk is the community would not always know what is going on, however we did mention we have invited Lewisham’s head of social care to attend.

This concludes the update for the September Lewisham MH Carers forum. As a note due to resources, I cannot always update on the 4 forums, but will try every so often.

The next Lewisham MH Carers forum is on the 29th of October

Lewisham MH Carers forum August 2019 update

133Welcome to the August update of the Lewisham Mental Health Carers forum. This forum runs from Carers Lewisham over by Forest Hill, just near Forest Hill train station. The forum focuses on unpaid carers who support/care for someone with mental health needs e.g. schizophrenia, eating disorders, bipolar, major depression, addictions and so on. I even try and involve those caring for learning disabilities.

The forum tends to try and form a relationship with the local mental health trust, that being South London & Maudsley, we also seek for ways to educate, discuss and empower families and carers. We also seek engagement from Lewisham Hospital, Lewisham CCG, Lewisham council, Lewisham Healthwatch and other important stakeholders.

I have always mentioned to members or perhaps anyone that knowledge and information is power. So for August we were very fortunate enough to have South London & Maudsley’s former Patient Information Manager. Roslyn Byfield is a trained Counseller and therapist, she has her own practice and is very active in discussions about BACP, which stands for the British Association for Counselling and Psychotherapy. I have known her for quite a while now and was happy that she took some time out of her schedule to engage with families and carers.

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As she placed leaflets and booklets on the tablet for carers to take, it brought back a lot of memories. Infact one of the booklets, which was the physical wellness booklet won an award.

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We were hoping to be joined by SLaM quality Improvement, but they are more likely to attend in September. Plus in some ways, perhaps that was a good thing because the forum had a major discussion with Roslyn. Part of the talk was on carer empowerment and several organisations were mentioned. We also talked about the Government’s anticipated release of the Green Paper which focuses on Social care, but there has been major disappointment that political parties are kicking the social care can down the road. There was also talk about the Carers Action Plan, but many are skeptical about it.

In regards to empowerment we were told to form links regarding the NHS Constitution and focus on the Human Rights Act 1998 and the Equality Act 2010 as well as the Care Act 2014. We can make the mistake of trying to hold authorities to account, but its very hard to do that on your own and getting links to the human rights organisations can really speed things up if carers are not given the right information and support.

Here is a link, which might interest unpaid carers on their human rights.

https://www.bihr.org.uk/carersguide

The forum also focused on European Convention on Human Rights and what to learn from them. This could be useful if policies really begin to put pressure on carers and it would be important to make links.

At some point I will map out organisations to pull in to educate families and carers and also form stronger links as high up as possible.

There was some talk about the review of the Mental Health Act, which hopefully can put a spotlight on how families and carers can be pushed aside, especially when a loved one comes to harm, neglect or serious incident. We spoke about the problem with documentation from the health services, but it was mentioned some documents can be complex to stop people delving too far into things. It can be a strategy at some meetings to place jargon to ward off stakeholders querying why NHS systems are not working or why is there a high rate of Serious incidents. A lot of talk was on quality improvement, but without engagement then some members were wondering what to do.

We were focusing a lot on NHS constitution Section 3A and how it can support families and carers. Plus focusing on the National Institute for Health and Care Excellence. It does not help that guidelines are not enforceable and there was queries as to why NHS services are struggling. It does not help that funds are lacking for NHS trusts and then government places targets putting staff under pressure, which in turn affects families and carers.

We did not spend all the time focusing on carer empowerment, but also on therapy and counselling. I myself certainly have had not very good experiences with counselling, especially family therapy. I felt the outcome was a way to cover up the lack of services and then blame the family or carer for the patient relapsing. Some carers are in a worse situation when they are pressured to admit they are the cause of mental distress, leaving them confused, stigmatised, ashamed and isolated.

This is when accreditation came into the discussion. It is well known that there are good and bad counselors, but what happens if accreditation does not pick out the bad ones? Who is to blame? The big push for IAPTs has caused a massive break up of the counselling industry. Some people feel that counselling is not a journey, but now like popping in for advice. Roslyn mentioned counselling should not dis-empower the patient into looking for advice. Counsellers need to have life experience before they can examine someones life, no course be it a BSc or Honours would be enough for such a profession. There was talk about the BACP and PSA (Professional Standards Authority), which carers should keep an eye out for updates.

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Lastly there was talk about how carers MUST make time for themselves, it is important to look after our own health and wellbeing with emphasis put on spirituality. Many of the members felt that they were pressured to focus on their cared for, but it was mentioned that such mindset should change. It was however not an order but to be mindful of our own health needs.

Below was a set of tips given by a veteran carer.

• Seek help at an early stage
• Don’t be ashamed of mental illness
• Speak out if you think something is wrong
• Take care of yourself with counselling and exercise
• Keep in touch with your spiritual side

I was glad that Roslyn had time for the forum and will certainly follow up on making those links. The forum was told that they already have the resources to make some serious pathways, but there still needs to be some support for empowerment.

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This concludes the August update for the Lewisham MH Carers forum.