We Coproduce October forum 2020 – A Caring Mind book Section

If you have been a regular to visiting my blogsite then I am sure you have seen a few blog posts about the fantastic mental health forum over in West London. Taken from their website “We Coproduce CIC is an award winning social consultancy, owned and run by local people for people who care about the future of health care in the UK. They are commissioned to work with local communities to coproduce better and braver solutions to health and social care challenges.”

We Coproduce do a lot more than run their forums over in Hammersmith & Fulham, Hounslow and Ealing. Over many years they have worked closely with the mental health trust West London NHS trust on improving mental health for the community. For the October forum facilitated by both Jane McGrath and Natalie Louise there were many exciting speakers.

One of the speakers was myself where I talked about my new book “A Caring Mind”. You can see the talk I gave from the video below.

Matthew Mckenzie speaks about his new book – A Caring Mind

The book “A Caring Mind” shines the spotlight on the carer’s experience when caring for someone with a mental illness. Often carers stand in the background and carry on supporting their loved ones because of duty, love and just being there.

I felt it is about time I put my thoughts down in a book and We-Coproduce along with West London NHS Trust supported the work I was doing.

You can get hold of my book on Amazon either in Paperback or Ebook.

Lewisham Mental Health Carers forum September 2020

Welcome to September’s 2020 update of the Lewisham Mental Health carer forum. The forum is run via Zoom to protect attendees from the risk of Corona Virus. The forum usually runs from Carers Lewisham centre, but is now online. The carer forum gives carers in the borough a chance to engage with Mental Health and Local authority services. It is a form of empowerment for carers and a way to gain insight and knowledge.

The forum also gives carers a chance to work together with health providers as co-production often gets raised. For the month of September we had a special “Carer Peer support” event, where many other carers were invited from my other carer groups, especially some from Greenwich who were wondering what does it mean when a mental health trusts champions peer support. Carer peer support has a different focus though, as it is aimed at families and carers. It also must be mentioned that peer support does not have to be a service that comes from the mental health trust, but carers themselves can also practice it.

We were joined by Peer speciallist and carer Donald robertson from sussex NHS partnership over in Brighton, we were also joined by Shelagh Musgrave from Birmingham and Soulihil NHS trust. Both were at the forum to educate and explain the importance of carer peer support at NHS trusts and services. We were also joined by Rachel Ellis who is South London & Maudsley NHS deputy head of inclusion and lead for peer work.

As usual the forum was supported by SLaM Jane Lyons who is the Croydon & Lewisham Involvement lead, however our CQC member could not make the forum today and has requested an update. Some of the things mentioned by the other NHS trusts peer leads should be of an interest to NHS England as there were views regarding peer support pilots across 3 NHS sites.

Sussex Partnership NHS Foundation Trust Carer peer support

Donald Robertson spoke at length of his role over at Sussex MH NHS Trust. He started off as a carer who cared for his wife for many years before slowly becoming more involved as peer specialist at his mental health trust. He now works within the NHS. So he feels like he can inhabit all three corners of the triangle of care in different ways. Due to being a carer, going through difficult times and being a health professional. Donald was trained as a social worker based on his own lived experience.

Donald mentioned peer support is about using his lived experience as a resource. It’s about changing things and how he wouldn’t go back to some of the times his been through, he wouldn’t even give his worst enemy back to some of those times he had, but his glad it that happened, because it made him a stronger person for today. Don pointed out peer working is a bit special. and it’s not just about having the the lived experience, it’s about how you use it. Peer support is how you support somebody with without having to be competing to see who has got the worse symptoms.

HOW PEER SUPPORT WORKS

Donald usually meets or chats to carers reffered to the trusts peer support via video link or phone and asks them “What would be helpful for you” “We can talk regularly as one to one around 15 minutes at a time. He would then confirm that the peer support can be flexible for carers to engage with him or donald could even be in contact with carers by text.

Donald spoke about the carers groups. One of the main groups actually existed before the COVID situation. Don mentioned that he sort od reshaped the carers group and things started settling in their place. The peer group has good numbers where 10 to 16 carers attend. So the peer group is really became very successful. Don asked that people to come to that carers peer group first or to call because he understands that when a carer is struggling? especially if its isolation or if they feel like they are the only one in such situation. Then being in the group where people just get it and understand where you’re coming from almost without having to say anything.

Don was glad to see veteran carers take the lead and set up a workshop to showcase the aim of peer support and the peer support group. There were challenges and struggles as other means to connect were difficult, especially connecting through social media or trying to work out how carers connected through whatsapp, plus NHS England set up something that is aimed to protect people’s anonymity which is very important, but also reduces the chance for carers to connect with each other.

It was also reported that when COVID-19 arrived around spring time, it shook peer support up a bit, because Don was not fully comfortable providing peer support online. This was especially when someone is telling you a difficult and emotional story only for the connection to drop, plus it misses several aspects of peer support including reading body language and giving others the chance to speak. Donald wanted to make the most of his time as being part of the NHS team when it comes to providing carer peer support, he did not want to duplicate what was provided there already and wanted to focus on giving more options for carers.

DESCRIPTION OF CARER PEER PATHWAY

I then took the oppertunity to ask Donald Robertson about his NHS Trusts flow chat regarding carer peer support. This was one way carers can examine how a mental health trust can provide support without having to read into any difficult jargon. It also gives an idea that the NHS trust is interested in carers and has a pathway on carers.

Donald told the forum that the chart is focused on carers supporting people having a first episode of psychosis, it’s about the evidence. So if you put some more intensive support in for some carers, that will mean that they will not end up in a long term service user. So the client service user is taken on and our standard assessment period is about six weeks.

There’s a lot of getting to know somebody before it’s completely clear, whether it is psychosis, or if there’s other factors, and Don actually gets involved earlier to help signpost to other services. Still, the lead practitioner identifies the carers and if the carer does not want support so close to the NHS Team then there is always independant carer support at Brighton’s carers hub. The mental health support team will always endeavor to keep the carer involved as much as they can.

You can find out more about Sussex NHS Partnership below.

https://www.sussexpartnership.nhs.uk/

QUESTIONS FROM THE FORUM

I then opened up the forum for carer members to ask questions regarding carer peer support at Sussex mental health NHS partnership.

A question on Older adults was of interest to a carer member. He was interested on what information did Donald give out the to older adult carers who are caring for someone with dementia. The carer was wondering if the pathways were more of a one shoe fits all policy. The carer member was also interested in sigma from the BAME community over in Brighton and wondered if Donald had any connection to that group.

Donald responded that it’s important to avoid the one size fits all policy. He engages with carers more as a person centered approach. So Donald is asking what the person in front of me needs. In the Services Donald works in it is all about people who have experience psychosis for the first time, traditionally that’s dominated by people in their late teens or 20s. So there’s a lot of work to be done about helping carers to acknowledge that they are carers. Donald feels his stereotype of a carer is somebody who is helping someone getting dressed, and maybe spoon feeds them, but he himself has never done that. His caring was much more about emotional support. And, rather than kind of fairly practical stuff even though they’re both important, but they are quite different.

I mentioned to the carer that since Sussex NHS partnership was a large trust that maybe Donald was not involved in the dementia service or BAME engagement, but there can always be a forum where we examine how other trusts engage with the BAME community.

Another carer member wanted to make a statement rather than a question, she felt so much resonates with her on what Donald spoke about. She pointed out 3 things, the First point was on how Donald mentioned the typical age group, that someone gets psychosis and some of the other illnesses or some of the other mental health illnesses. Her son fell ill when he was in his late teens. She still is not sure that her son’s illness has been fully identified and what caused it. Her Second statement was how it affected her so much that she couldn’t move on with her life, it was very difficult for her to move on.

Her Third and last statement was on how she was assisting my brother and even though her mother had 10 of us, she ended having to be the one taking on the caring for her brother, while most of the other members of the family want to know what’s going on with him they are not offering to help.

Donald responded and agreed that when one of the carers who was in that situation he remembered them telling him to “help them is help the people around me to not come through me” Donald remembered that he did a work with about four or five different people from that family. He felt it’s quite natural, because people are scared, it’s easier to get it second hand in some ways, because the main carer is that kind of buffer.

Another carer raised the point about my recently released book and if the CCG would take the oppertunity to help promote the book due to my high profile of raising carer awareness. A recent update is SLaM has purchased my book to the library under their carer’s section, although the carer mentioned the book should be standard reading on training staff about carer identity.

Birmingham and Soulihil NHS Trust carer peer support

The forum was given a chance to hear from another mental health trust on carer peer support. We heard from Shelagh Musgrave who is the Family Carer Peer Support Worker on the Women’s Secure Blended Service Team.

She started in her role nine months ago, but she was honest that there are challenges as she felt there are still NHS collegues who do not embrace family/carer involvement in getting peer support. She felt there can be a lack of communication to the carer and it needs to happen more often. This is particularly a problem when confidentiality continues to block carer involvement and then causes families to back out of recieving any other means of support.

She mentioned it can also be quite challenging to encourage colleagues at the NHS to understand that actually families and carers have shared information with them so then it’s no longer confidential. So if they have shared something with us and I tried to speak with colleagues about it, I surely can talk about it to them because it isn’t confidential anymore. Yet, this is not often the case as if something keeps blocking that triangle of care regarding families and carers.

Another issue with confidentiality is Shelagh’s role is actually with a charity rather than embedded with the NHS trust and even then confidentiality can sometimes block her off from getting involved or finding out what is going on. For example because she is peer support worker she might have picked up on a self harm incident and would need to update the family on what could be happening. She felt it’s really hard to get information as a carer and they just have to sit with it. It is like the carer is left wondering what’s happened this time.

The reality is that the carer be informed of these incidents, because it’s relevant to the person that cares for them, but unfortunately the culture of care is that carer may get shut out, which leads to impact or the trauma that might be taking place with the family and carer is left, as it always has been.

Shelagh mentioned that the NHS Trust actually have a family/carer pathway modeled within the trust, although it’s in the very early days. Still there is a problem as there is a seperate service user pathway and that process has created challenges as well, because it has led to some of her works going on hold.

Still there has been good engagement where it has made a great difference for families. Shelagh mentions she goes on to contact carers and get feedback from them, which is incredibly positive. Shelagh stats that she has a very proactive approach to being in touch with families and carers and she essentially makes my initial contact with them introduce herself explaining what her role is.

Shelagh does ask carers, what would be helpful for them. But she also makes them aware that she will be touching base with them regularly. So her approach tends to be, and she will call and if you don’t want to speak to me, that’s absolutely fine. I will check in on a monthly basis and I wouldn’t take offense, if you tell me you don’t want to hear back from me going forwards. Oddly enough no carer has actually told her that they do not want to hear from her.

Still Shelagh does not speak to every carer that’s on the books and she does make contact with as many of them as she can, but is not permitted to contact some because there are some for clinical reasons that I’ve been asked not to be in touch with, which she felt was a shame, but she can’t argue with that because she does agree with that everybody should be entitled to access peer support, if they wish and she do think it should be your decision, I do think it should be a clinical decision.

So she has ongoing contact, which ranges from anything from every fortnight to every two months. What she also do is feed concerns that the family have back into the a clinician. So for example, we had a young woman who was being discharged. Her family had attended the discharge CTA section 117 meeting, but actually hadn’t been given any contact details for the community care coordinator or the accommodation manager. So I was able to feed that information in the team to get contact details from the team and was able to get information to that family.

As far as the NHS knows they were aware that she has ongoing contact with families, but what she finds really interesting is a professional at the NHS states to her that our contract has to be meaningful. What does this mean?

Well meaningful to who and when you drill down, meaningful contact seems to be viewed as contact that is going to provide information that’s relevant to the service user. So if Shelagh’s contact with the family is not going to provide the clinician with information that is useful and valuable to the service users care then there is little point in meeting the family, but Shelegh is against this culture, because in her role she is there to support the families and carers and I, if they happen to share something about services or have a team.

Shelagh does tell NHS professionals she works with right in the beginning, that she works for a charity in partnership with the NHS and has an honorary contract with the NHS. However she is not sure if it’s because she works in the charity or because the NHS hears the word peer that NHS professionals might stand back.

Shelegh feels the feedback she gets is the value of talking with somebody who has lived experience is “that you just get it” and the carer does not have to explain what things are like to me. Shelagh has lived through it. She feels because carers might be limited in communication if they are talking to an NHS professional, nurse or psychiatrist. There’s often a sense of well, what do you know? What do you know, you haven’t experienced it from my carer’s side? So how can you stand there and say this to me. Whereas carers sense if she says something to do them or listening to them, and they will often say to her but you do understand this, don’t you?

It’s like a shortcut has created in connecting with carers and families where you don’t have to explain to people, what it’s like to deal with your child who self harms and you don’t have to hide from people, or you don’t have to explain to people how heart wrenching it is to hear when your child says to you ” I don’t want to live anymore why dont you just let you die?”

You can find out more about Birmingham & Soulihil NHS Trust below.

https://www.bsmhft.nhs.uk/

Family Carer Peer Support Worker view on the future of carer peer support

Shelagh felt that there is a massive need for carer peer support workers. She is aware that carer peer support research is very limited. However, she thinks we have to look at is that the research into peer support itself shows its value. So why do we have to differentiate whether or not peer support is carer or service user we’re looking at here towards the value is of lived experience. Doesn’t matter what your lived experiences?

Personally, she don’t believe it does. And But clearly, there are people who work by the research. That being NICE (National Institute in Care & Excellence) works by the research, Shelagh mentioned that she is very upset wit NICE because of this and she think that’s really sad peer research is not extending to families and carers.

Shelegh feels when carer peer support is established and its on the ground then we can see the difference that it makes, she feels that does not matter, what the background of the lived experiences is and wonders is she the only person in the NHS trust, which has 4 and half thousand staff?

There is a definite barrier of some sort, by changing the way families and carers engaged. Shelagh thinks we need to be doing it. She thinks we need a top down and bottom up approach, which has to come together. Because if you don’t have the support from the senior management’s, you’re not going to have this sense of drive.

Shelagh hopes that over time, she hopes that more and more people will change and understand that families and carers are not just there to provide background information on the service user. Carers are the equal partners in the NHS and NHS professionals also have a responsibility to families and carers. Because if they don’t support the families and carers with somebody is in the inpatient setting and they just discharge them into their community that hasn’t been upskilled or that hasn’t been supported, then it’s good to keep that revolving door going on for decades.

South London & Maudsley Peer worker presents

Rachel who is SLaM’s lead for peer working thanked Don and Shelia for their experience and is eager to see what results in regards to NHS England’s pilot peer project. Rachel is interested in what worked and what didn’t work. She was also thinking very much about what was the feeling or thinking about peer support is it needs to be co produced. Rachel felt that we can’t just take the model from Birmingham or NHS England and then drop it down in South London and hope that it works.

What SLaM needs to look at is that we need to learn from what the carers want to help them relate and be involved and also engaging with the BAME community. We also want to make sure that we have something that we know works from the outset and avoid that one size fits policy, we need to be creative, and we hope to be working alongside our carers to make sure that we get it right.

Rachel feels the big questions and the elephant in the room is about money/resources and how state to the CCG or other people to make sure that kind of professionalized peer support is seen as important and something that they’re willing to fund that and I feel that’s where the carers forums like this really come into its own and making a guideline proposal around what you’d want from care with peer support.

Rachel mentioned it would be really useful for members to write something formal to the Commissioners about your needs and what you think professionalised peer support would look like. Rachel added what carers would think the benefits are to the CCG especially relating to the triangle of care.

So it’s not just around providing peer support and support for carers, but also making sure that that’s all linked in so we get a really good support for when someone’s discharged or someone’s community services. Its not only important support for carers, but it’s also seen as linking up care for the people who use SLaM’s services.

This concludes the September update for the Lewisham Mental Health carer forum.

World Mental Health Day 2020

Welcome to another Blog post from Author of A Caring Mind, carer activist and former carer Matthew Mckenzie. As of today being the 10 of October 2020. It is World Mental Health day and The theme set by the World Federation for Mental Health is ‘mental health for all’.

There are many organisations and charities promoting world mental health day. If you want to see the video of this blog, then see below

World Mental Health day is about continuing to raise that much needed awareness of mental health each year. This year’s theme set by the World Federation for Mental Health is ‘mental health for all’. When we talk about Mental Health, people tend to feel mental illness is about Mental health problems and how it affects around one in four people in any given year. Those illnesses such as depression and anxiety, to rarer conditions such as schizophrenia and bipolar disorder.

Mental health problems affect around one in four people in each year and since this has been a tough year due to lockdowns and loss that have had a huge impact on our mental health.

However we can all feel depressed, angry, stressed or frightened. This is why Mental health is everyone’s business. We cannot continue to state severe mental illness is someone elses problem to fix. Taken to the extreme, even anger can become a mental health challenge if it gets out of control.

It does not help that around 450 million people live with mental disorders that are among the leading causes of ill-health and disability worldwide (WHO’s World Health Report, 2001). The World Economic Forum (2018) noted that mental health disorders are on the rise in every country in the world and could cost the global economy up to $16 trillion between 2010 and 2030.

From job losses and uncertainty. We’ve all found ourselves under pressure and carers are not exempt from such pressures due to having to care and support someone suffering mental illness due to extra strain. It is important carers get a chance to support their own mental health and wellbeing, please its so important carers take a break and take time out even if only for a little while.

There still is mental health stigma leaves people feeling isolated and ashamed and not being able to access support, so this is one of the reasons for campaigning on World Mental Health day.

The good news is that you can do something for World Mental Health day and raise awareness, be it by talking about it, campaigning even if using social media or attending online events, it does not hurt to raise that awareness.

New book – A Caring Mind by Matthew Mckenzie

This is my first blog post of many about my new book “A caring mind”. If you have visited this site in the past, then you are probably fully aware that I promote the experience of caring for someone with a mental illness. This book of course is no different and promotes my cause even further.

There are several differences between this site and my book and that is I cover my carers journey when caring for my mother and supporting my brothers. I also cover more in depth the importance of carers getting involved and also networking with each other.

Some information has been taken from my website and added to the book, but I have also included new topics that can only be read from my new book “A caring Mind”.

For anyone caring for someone with mental illness this book can give many things including identifying with other carers, giving hope for the future, examining current carer themes, empowerment for mental health carers and plenty more

Here are the chapters of the book, but if you wish you can buy my book from Amazon

  1. Telling your carer story
  2. My story
  3. Caring through Coronavirus
  4. The tragedy of Young carers
  5. Carer traits and characteristics
  6. What I found vital for carer support
  7. Networking with Fellow Carers
  8. Including unpaid carers in NHS Co-Production
  9. The stigma of an unpaid Mental Health Carer
  10. What I learned as a carer

Lewisham BAME MH Carer Forum September 2020

Welcome to the brief update of my Lewisham BAME Mental Health carer forum which is aimed at minorities caring for someone with a mental illness in the borough of Lewisham. The September forum looked at engagement from South London & Maudsley’s IAPT service (Ellen Heralall) and also engagement from the SLaM QI Peer Project Worker (Richard Mortan).

We were joined by the regular carer members and also newer members including some from my other carer group in Greenwich. There were also some members from community groups including African Advocacy Foundation, Bromley, Greenwich & Lewisham Mind’s community wellbeing group and others.

We were also joined by the comms rep from Birmingham Community Healthcare NHS Trust who was interested on BAME developments in the area. We were also joined by Leonie Down from SLaM who is developing partnerships across Lewisham as part of the transformation of mental health services. Part of her role is to bring together a community strategy for service users, staff and carers within slam.

Ellen explained more about the IAPTs service which means Increasing Access to Psychological Therapy. The IAPTs service has just been running over a decade. They are based in primary care. So they operate very closely with the GPs and operations within GP surgeries. The IAPTs is also now part of the national framework, which is provided by NICE (National Institute of Care and Excellence) which recommend treatments. The aim is to provide easy access for the community to receive psychological therapies for depression and anxiety primarily, but not complex mental health conditions.

The referrals would come up from the GP and people can refer online to go through the triage process. Then they’re offered either step two treatment, which is a Guided Self Help well-being option via online CBT and psycho-education.

Ellen explained that the therapy will usually last generally from six to eight weeks. She mentioned that as with a lot of NHS services, they are fully aware of the discrepancy in the quality of services for the BAME community, accessing IAPT services. Plus when they do access our services, we are also aware of the inequality of their experience and their outcome in poor experiences.

So SLaM have been working on their objectives, but they are resourcing and working hard to look at improving the access of IAPTs to the BAME community,

SLaM are working with our community partners. Which is the big drive for SLaM at the moment to work with community groups, especially with ones attending such forums e.g. community groups, wellbeing groups and fitness garden projects that already exist in the borough. SLaM are partnering up with such groups and seeing how they can work together to bring psychological therapy and mental health awareness treatment to the community in a way that is relevant for them.

Ellen reported that SLaM are also reaching out to step outside of the box and make themselves more accessible to provide such psychological treatments, but also to build more relevant services where to a greater racial understanding of how racism, and discrimination and inequality affects mental health. This helps in raising the awareness of triggers in such experiences. Racism is a trigger and discrimination can also be a trigger to mental health. It is important such forums like the BAME carer forum exist so these things can be talked about in safe spaces.

Ellen mentioned that it’s good to be at the carers forum to talk and network about how how we can continue to become a more accessible and more relevant service.

IAPTs will work with those from culturally sensitive support groups. So there’s lots of different projects IAPTs is involved in. They have become a sort of a broader service that is probably in excess of 100 staff on IAPTs alone.

Ellen felt it was time to open up to questions from the members and attendees from the Lewisham BAME carers forum.

Question and answer session at the forum

The first question was on working with grassroots practictioners on issues with racism, discrimination and some data triggers that effect on mental health.

They wondered how IAPTs is mainly dealing with practitioners and the community within that kind of setting and how does it actually work? Especially with the aim to raise awareness and to deal with the issues of the experience of racism in the community.

Ellen mentioned that there was someone who had been running these groups already. She runs the groups in culturally sensitive emotional support groups aimed at the black and African African Caribbean community, which were 12 weeks. Ellen quoted that the groups were safe spaces to talk about mental health and a convient way to develop emotional wellbeing.

Other questions were on staff and how many were from the BAME community. Ellen did not have the figures to hand, but is bound to bring them at a later date, although she did mentioned about 50% to be vague. Ellen actually leads on the counseling team and because they come through a different sort of training and different routes they tend to get a very diverse range of counselors.

The psychological well being of practitioner to practitioners are now become more increasingly diversity, Ellen might have to get back to exactly the figures, but SLaM are certainly visibly increasing numbers of young BAME psychologists coming into that work stream, where the mental health service have the biggest problem is in in high intensity CBT.

Although BAME therapists certainly are increasing, Ellen felt we’re not there yet. The service is still actively recruiting BAME therapists.

The impact of COVID and technology

Another question arised regarding COVID-19. The carer member queried about lockdowns going on for another six months, he felt carers will come to the organization in six months time, with the community suffering with depression, anxiety and stress. The carer was wondering how they’re going to cope with the extra load BAME carers who have suffered.

Ellen responded on why she is glad to be at the forum. She would like to speak with the group to be able to plan resources. She admitted it would be a difficult task. Within the Lewisham IAPTs she mentioned they have got two priority streams. One of the streams they call priority pathways where One of them is NHS and social care and the priority stream can be tailored to support BAME carers who have been hit hard by the COVID-19 impact.

The carer member responded back stating supporting BAME carers through the crisis is only part of the problem. He felt how can black people know what IAPTs is doing? Especially for COVID-19. So they feel they can come to you when they have a mental health issue and not waiting till they’re in a crisis.

Even the internet can be a problem in itself. If you haven’t got the internet, how do you get on onto a website? So I’m just looking about what IAPTs is doing?

Ellen did completely agree that they are also concerned about people who don’t have access to the Internet and digital services. The services are hoping to open up one of our sites, so that they can do face to face work for people who can’t access digital treatment. They even do telephone treatment which works quite. There is still a lot of work to do.

Other carer members were interest in the size of the Lewisham IAPTs team and how the core element works in diversity. The carer member was interested in how IAPTs is reaching the community. Other members gave some ideas regarding churches, supermarkets and leaflets. Some members mentioned there is a problem with GP referrals and there was criticism on social perscribing in where people just get endlessly referred and not supported.

One other question I felt was interesting was from another carer interested in if there is a body? Which has overarching responsibility for your services in terms of any mental health? This then led to another question from another carer regarding when IAPTs signposts people to the other services, social services and so on. Is there an effort made to check with how that signposting is working? How did they actually make a good connection? How long? How long does it take for that person to get an appointment.

Presentation from SLaM QI Peer Project Worker

Next up to speak to the BAME carer forum was Richard Merton whose role at South London & Maudsly NHS Foundation trust is to try and improve service user and carer voices into MH services. Richard started about how they had an event in July, where the aim was to talk about people’s experiences of meaningful contact during COVID and the sort of things that might help going forward.

From that event they took that away some themes and feedbacks. One of the themes or discussions that was touched upon in that event was of how the trust can support BAME carers. So Richard reminder us that there is another event on the 8th of October and it would be great if anybody wanted to come along to that. A lot of the things that was also discussed at the last event in July was around technology and access to technology, plus some of the things that the forum had been talking about.

Question and answer session regarding Quality Improvement

One carer member was interested in the speed of action from meetings as in how long when they have decided what the outcomes are of these meetings? The carer member continued stating how will Richard or the NHS Trust be able to really take to put decisions into practice? Because he does not want us to say, yeah, we’re going to do this and We’re going to do that. And then this time next year, we’re still working for the outcomes of these, because of the situation we are were under a moment.

The response from Richard was on how things are going to take some more of a structural change. However the event is kind of a listening event based on what communities asked initially. Richard suggested that he thinks it’s always important to come back to someone and annouce what could or could not be done based on what was requested.

Another carer member issued a request stating that if Richard be sure to send information about the October event through the involvement register. Plus to make sure to use ways and other means of sending the information out and spread it as widely as possible to the community.

Another member of the forum mentioned the situation with local government and the impact on BAME carers. She felt that people are not looking at financial aspect of that being at home and having to be connected digitally. Its like having to use the internet and there is no compensation because BAME carers are having to make sure they have to stay online, to be able to be in contact with all the things that are going on in the community, but the bills are going up.

The community support member continued to mention that she has lots of clients who are actually in financial problems. As in losing money in which they can’t have the internet, they can’t be able to be involved. So what aspects are they going to help people like that, she thinks this needs to be looked at the long term due to the high risk of people losing their jobs.

Richard mentioned that NHS England, have got a branch called NHS-X, which looks at technology. And so that’s slightly will take a bit longer, but they’re looking at questions like the community support member raised. Richard also raised the point that at the trust they had a response to COVID. They have a few what they call workstreams going on and one of them is remote consultations and how we can do that across the trust.

Another carer repeated the question saying this problem with technology and paying for broadband and so on, has been going on even before COVID-19. She had to support someone and still supporting that person after she had spiralled down into severe depression. It seems that one of the causes was the person she is supporting was in serious debt, partly because of phone bill.

One of the newer carer members pointed out that the financial issues have always been an issue. And it’s a mental issue. And it’s just the way it is, and it’s never gonna change any time soon. But the question really is how you change that. And when you use the word inclusion, or what we use when we talk about community, there was a way of taking that deficit and turning it into a positive. This is what is needed to be involved in a community. So if there’s a way of paying it back then it is a sort of benefit. Because then you’re giving help to that person who then learns as if it’s an education. I have no idea why this is not happening, but all businesses should have a social responsibility

Richard mentioned how there was support from Charity especially regarding the purchase of mobile phones to help mental health staff connect more with their patients. Richard admitted charity cannot be the complete answer. Richard also wanted to say that a few of people at the forum came to an event in June, which was a big broadcast, where SLaM plan on developing work streams linking the leaders of the council’s together, and and looking at some of these social issues.

Some of the members of the forum are also members of the Lewisham BME Network, one member of the group mentioned an initative from Microsoft that is currently investing in BAME communities. She felt that it is really significant if Microsoft is connecting with some of the groups, and maybe other providers are doing the same like Virgin, or one of those. She felt that perhaps we could ask them on what they do for charities. So there’s probably things we could do in the community that would impact the way we take on the digital platform.

Other carer member raised an important point on that there are many strands to what needs to be done within the community. But if we’re talking about the individuals, within the community, black and white who are experiencing poverty and no access to the internet and phones. He thinks there’s more of a structural in political resolution to this and not just community based solutions. So maybe talking to MPs and putting pressure on them in that sphere, to look at the whole wide community as a whole, not just particularized issues that we’re raising today.

This concludes the brief update of the September Lewisham BAME carer forum.

World Suicide Prevention Day 2020

Welcome to another blog post by Matthew Mckenzie former carer and expert by experience in caring for someone with a severe mental illness. I know it is a bit late, but on the 10th of September 2020 it was World Suicide Prevention day.

Suicide Prevention is so important that awareness of it should be raised at any time. I even made a video to help raise awareness of suicide prevention.

Usually I raise awareness of carers, specifically carers who care for someone with a mental illness, but every so often I do want to raise awareness of mental health. The causes of suicides are an important issue because it certainly does involve mental health.

World Suicide Prevention Day is an awareness day observed on 10 September every year. World Suicide Prevention Day aims to start the conversation about suicide and to show that recovery is possible.

There are many charities and organisations promoting world prevention suicide day. The theme for World Suicide Prevention day is of ‘connection’ and ‘Working Together to Prevent Suicide.’ The awareness campaign is organized by the International Association for Suicide Prevention (IASP)

With World Suicide Prevention day it is especially relevant because Covid-19 has affected us all in different ways and brought new or increased challenges. Many people have lost so much, be it homes, loved ones and that form of connection to society and to the world.

Having a strong sense of connection is an important part of suicide prevention. We all can form a connection with friends and family, as family is so important when caring for someone.

But still, Why is World Suicide Prevention day needed? Unfortunately 800,000 people take their own life each year. Despite the terrible statistics, one life taken is always a tragedy. There is still a lot of work for the government, health organisations and society to do. Families and carers looking after someone who may suffer from suicidal thoughts can be devastated when they loose someone to this.

Reaching out

It is often helpful for people to have an honest communication about mental ill-health support. Having such conversations have the power to increase awareness and helps to break the stigma of mental health . It is always important to remind people are not alone.

If suffering from suicide thoughts it is good to let family or trusted friends know what’s going on for you. They may be able to offer support and help keep you safe.

Joint Southwark & Lambeth MH Carers forum August 2020

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.

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.

Quality-Care-Commission

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.

GP Lewisham

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.

gp-surgery

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.

stringio

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.

Top 10 reasons for carers to give views on healthcare

me_edited-1Welcome to another blog post by Matthew Mckenzie, a former carer and carer activist from South London. I usually focus on carers who care for someone with a mental illness, but at times I delve into health and mental health.

Never before has the healthcare system in the UK been under a spotlight due to the COVID-19 pandemic.

There are many organisations that request unpaid carers to share their opinions on healthcare. One of them being healthwatch.

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You as a carer can experience what healthcare is like, when the person you care for receives that care from health or mental health services. If the patient’s care is poor from those services, then unpaid carers are forced to step in. If health services do well, then the burden on carers is lifted.

To watch a video blog of this post, click the video below.

It is so important carers of those using the health care system come together and submit their views on healthcare.

Top 10 reasons to put your views on healthcare as a carer

1. To provide feedback to improve health services.

– At Healthwatch engagement meetings, Healthwatch usually ask questions to participants on how do they think health services are doing? It is the best time for carers to report or feedback how services are affecting the person they care for. These views can go back to improving health and social carer services.

2. A fulfillment of changing something

– Although carers can get fed up of stating the obvious when health services continue to struggle. It can be a fulfilling experience to use the power of your voice to institute change.

Not many people have time for unpaid carers along with the ‘cared for’ to try and change things for the better. As a carer its a chance to change things, which is better than no chance at all.

3. A great way to network with like minded people

– At times, there might be other carers attending Healthwatch events or groups interested in how health and social care is affecting carers and their ‘loved ones’. The more you attend health engagement events, the more you can network with like minded people. It is in carer’s interests to network and understand the pressures on health systems.

4. Getting information on health services

– It is not always feeding back your opinion on health and social care. At Healthwatch events, there are often reports and updates to the community. As a carer you can get the chance to find out how services are doing.

You can even ask questions requesting reports and updates for particular services, it is your right to know and you should exercise that right.

5. Being part of the ‘health’ community

Without good health or good healthcare services then the community suffers. There are local and national drives to improve health for everyone and get people to understand the importance of health services. A community that is interested on how health services is performing is able to inspire others. It takes time, but it is worth it.

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6. Making a change for the better

People can either wait around for health services to change or continue to complain. Carer’s can try to see the overall picture of what things could be like if they feedback on healthcare experiences.

Carers cannot always expect the person they are caring for to do this all the time, so carers must want to change things for the better. A better healthcare system supports everyone, health professional, patients and their carers.

7. The reward is greater than the risk

The risk of healthcare failing or not getting responses can be catastrophic for everyone. The more feedback a healthcare system gets, the more information that can be tailored to improve health services. If people do nothing then their is always that risk. The risk can cause health systems to not perform, causing more patients to be unwell and not get a good experience of care.

8. Know who is responsible for what

When attending Healthwatch meetings and engagement events, notice who also turns up. There might be health commissioners who are responsible for purchasing health services. There also might be those who run those health services. Just knowing who those people are can be a way of holding them to account on services. It is possible at these events to even ask them questions or queries.

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9. Meeting the challenges

The health and social care system is under increasing pressure. If it was not for increasing budget problems to services, then the COVID-19 crisis has increased the strain on services. All these are challenges for the 21st century and carers should try and rise to meet those challenges.

10. Helping other carers in your field

Information, reports and surveys from Healthwatch should not just stop at the carer attending such events. Carers can take the lead and spread information to other carers, especially at carer support groups or carer forums. Not every carer can be everywhere at once, so veteran unpaid carer can help others become more aware on how services are doing.

Happy Birthday for a lovely carer

HT39

BRENDA ONATADE

Poem from Blodwen Jones who has written a book of poems called MOONSTRUCK.

On Monday 17th August, this amazing lady will be 80 years young!
In my eyes, there is absolutely no way her praises can sung
enough to do her justice. How many people has she cared for over the years?
I truly wouldn’t want to hazard a guess – it would bring me to tears.
(Tears of respect for a selfless woman who truly cares.)
To tell you the truth, I don’t know her well, but I know enough to be able to say,
that she is an inspiration to myself and others on the IR at the end of the day.
I have never heard her complain once. In fact, the opposite is true –
and she really is a fount of wisdom for people like myself and you.
We need more people like Brenda, to make the world a better place.
She could be an inspiration for all of the whole of the human race.

 

HAVE A VERY HAPPY BIRTHDAY BRENDA.

Not all Super hero’s wear capes, well except for this one.  Brenda is that someone I have known for many years and it is her birthday today.

She has been there fighting that hard fight to get carers recognized and identified.  Brenda has been through that difficult carer story and understands how horrible that carer journey can be.

She has been a member of many groups both carer and service user and we all hope she continues to contribute to the expert by experience cause.

Happy Birthday Brenda from

From Matthew Mckenzie

Also thanks from the Involvement Register Support Group, Southwark, Lambeth and Lewisham carers.