Tag Archives: carers

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.

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

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.

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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.

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.

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.

Joint Southwark & Lambeth MH Carers forum July 2020

Maudsley_Hospital_Main_BuildingWelcome to the July update of the MH carers forum.

The forum Encourages carers of those with mental health needs to get more engagement from services and to understand how mental health services work. Carers can also query them and compliment what they feel are going well. In attendance were Southwark Carers trustee, Lambeth carers hub mental health carer support. A few carers especially involved ones. The carer inpatient lead for Southwark and also the Carer lead and head of occupational service lead for Lambeth. The forum was also joined by staff and a governor from Guys and St Thomas to speak a bit about their mental health and carer’s strategy. We also had a young person demonstrate a new online application called “kooth”, aimed at young people.

Lee Roach from Lambeth Lambeth Hospital spoke about updates from Lambeth Hospital. He mentioned to the forum about staff who are carer champions over at the hospital. Staff work in a team effort, but not all of them are occupational therapist by background. Lee mentioned the different roles some of the staff do as some of them are running carers groups, some of them were maintaining carrier information boards.

Some events are being planned over at Lambeth hospital for carers. A recent event had a Junior psychiatrist, and occupational therapist and pharmacist talk to carers about questions that they had about medication and about diagnosis for their loved ones. Previously Lee wanted to establish a Carer champion in each of those six teams that were working out of the the Lambeth area. They made a little bit of progress and two or three members of staff were identified as carer champions with others who were keen to be involved.

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They even had a carer champion at community level, but unfortunately COVID-19 hit and services had to be put in lock down and what took place then was that the teams were reorganized and merged to cover services. Service leads were expecting a significant reduction in staff availability. So at the moment they are working to operational crisis levels.

Lee continued to state that for the 21st of August they plan to organize a meeting for carer champions. So they will get members of staff together alongside carers and aim to invite involvement from carers to update them on regarding the COVID period. The event will also share good practice and also to advise the new carer champions about what the expectations are for them.

The Lambeth hospital carer and services lead spoke how important that they make sure that the clinicians are thinking about carers and also to make sure that they are aware of all those people that are involved in that person’s life as much as possible.

It is also important that staff record carer’s details on SLaM’s patient record system so that should anything happen to the patient then the clinicians able to stay in contact with carers. Lee mentioned it is important carers are offered engagement and support plans for their needs, not just the need to services and talk about what some of the needs they might have.

Lee excitedly mentioned the that they are developing some exercise classes for carers. These exercise groups are being organized so that information can get to the clinicians and the carers in Lambeth as quickly as possible. On the 7th of September they are going to organize some events for the community mental health teams in Lambeth to raise the profile of carers and the needs of carers and I’m looking for volunteers and people who are on the involvement register. Lee felt the most effective way of communicating with clinicians about the needs of carers and the importance of involving carers, in the care of their loved ones, is for carers to tell their story and to hear that narrative of the carer’s experience.

The update impressed the chair of Southwark carers who was interested to know more about carer champions. I also raised the idea if Lambeth are looking to employ a Lambeth carers inpatient lead as for what Southwark have. I also wanted to know more about the role of Anna Penn-Carruthers who is a centre lead at Streatham living well centre, she was unable to attend the forum, but will come at a future date. I also wanted to know the situation with COVID-19 affecting Lambeth services.

For some time no carer is allowed on the Lambeth hospital site and that was the same for the Maudsley site as well. So no physical visits allowed. That’s now changed and carers are able to visit. But it needs to be by appointment now they have got rooms allocated on the Lambeth hospital site for the carer’s visits to take place. The thing is COVID-19 has made things much more restrictive. Lee feels the challenges for everyone over this period has been utilizing virtual meeting spaces and in how they are using the software mircrosoft teams. Things are moving back more to where they were before, but they are still very limited in terms of how staff visit people’s homes, organizing meetings and limiting the amount of unnecessary contact.

Kooth application

Next up for the Joint Southwark and Lambeth carer forum was Chanelle from XenZone to speak about Kooth which is an online mental wellbeing community. Kooth gives young people access to a community of peers and a team of experienced counsellors. Kooth is accessible for any young person who lives works or studies in Lambeth from the age of 10 to 26 years old.

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The good thing about Kooth is that it is free mental health support, but obviously not a replacement for the NHS or any mental health services. Kooth also has a link of different services that young people can contact when they’re in a crisis, which would be national services, because Kooth is not a crisis service is also something that people can use alongside with those those resources.

Shanelle showed us a quick video about Kooth, which can be seen from below.

Video of Kooth demonstation

After the video Shanelle explained what it’s like to sign up to kooth via a demonstration. She mentioned that when you sign up to kooth that it is very simple. So as shown in the video, it is an anonymous service. So they don’t ask people for their names or their address or anything that identifies them. Kooth only asks for basic demographic data that’s taken such as their gender, their ethnicity and age. And the reason they ask for their age is that they can make the content appropriate to the age of that young person.

Kooth has many different links where one of them allows a young person to look into the different counselors, as they can see different biographies about them about whatever they’ve chosen to speak about. Kooth is available in the boroughs of Lambeth, Greenwich, Bromely, Bexley and Southwark for the ages of 10 to 25.

Staff from both South London & Maudsley and Guys & St Thomas were interested to developing links to Kooth for referring to it as an additional resource.

Guys and St Thomas Carers Strategy

Next up were staff from Guys and St Thomas regarding their carer and mental health strategies. I feel part of the aim of this forum is to allow carers what services, policies and strategies are being done to aid in supporting their role. We were joined by Jackie Waghorn who is their new Mental Health lead for that trust taking over Caroline Sweeney. We were also joined by Sarah Allen who is the Head of Patient Experience at Guys and St Thomas talking about their carer’s strategy.

Guys-Hospital

Guys and St Thomas also sent Nikki who is one of the dementia, clinical nurse specialist on dementia and delirium services and they are inpatient based who their main role is to provide care and support to patients and their carers and staff within the inpatient settings. Nikki spoke about how they support patients by ensuring that staff carry out the principles of the St Johns campaign such as ensuring that flexible working, flexible plans are committed. Other things done are getting out carer surveys out to carers so that they can really understand that they have a voice and staff can understand what carers needs are. The staff normally carry out these carer’s surveys when carers come into the wards to visit their loved ones, and then staff can go through the survey with them. Otherwise, they send out carer surveys via posts and staff collect them.

Next to update the forum was Sarah Allen who is Hear fo Patient experience, she came to talk about the NHS trusts carer’s strategy and carer’s policies that are under review. There are 3 priorities so far which the trust will be looking to review.

1. Providing carer’s network days which are for local residents in Lambeth and Southwark, plus GSTT staff who may also be carers. The aim of these network days is to develop carer’s skills further in sort of key areas is what’s known as key skill stations. So sort of little mini sessions on different aspects of caring for someone. So that ranges from things like providing personal care and mouth care, to things like on dementia and delirium.

2. The other priority is they have a carer’s passport at the trust, but it’s not quite as well embedded as they would like. But really the role of that document is to support staff in understanding and recognizing the role of carers and the part they have to play in terms of the care and sort of providing information and understanding on the condition needs and preferences of the patient.

3. The final priority really is around for GSTT staff. This being that some of their staff are carers and is pretty much recognizing that their own staff do you have caring responsibilities as well often in addition to being parents, for example, that may also have young children that may also have a responsibility. They’re looking after an older parent or somebody else within their extended family or Friendship Circle.

The chair of Southwark carers was interested to hear more about Guys & St Thomas’s carers passport. She was also interested in the networking days.

Next we had Jackie Waghorn speak about her role as the the new mental health lead at Thomas’s. Jackie has been in post for six weeks, so is pretty new and still trying to find her feet in the organization.

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She has has come from Croydon, where she was doing a very similar role running health services. Prior to that. she worked in offices and mental health trust for many years, managing crisis and mental health services and working in crisis and mental health services.

Guys and St Thomas Mental Health Strategy

Jackie spoke more about GSTT mental health strategy which was launced on Mental Health Day and the strategy lasts up till October 2022. In developing the strategy, this strategy was devised by her predecessor, Caroline Sweeney. And in devising this strategy, she did consult with a number of different stakeholders, including patients and carers. Jackie was not sure what any of the forum members were involved in that.

What the strategy does and in, in supporting carers is not quite specific, becaue it’s basically divided up into three sections which are patients, people and partnerships. And it really is just thinking about how they can involve carers and how they can support carers in each different section. Jackie is looking to basically develop a group which would oversee policies and things to make sure that mental health is considered in everything that GSTT do. Next we heard from Georgie Smith who has recently recruited into a new role which is Mental Health Improvement lead.

Her role is and the work that I’ll be doing is is carrying out several projects under the name of Lilly Sterner, who was a patient who left a legacy. In those projects she will focus around improving mental health awareness and improving mental health delivery within the trust of guys and St Thomas. Then Paula one of the governors from Guys and St Thomas NHS Trust. She was interested to hear if there was enough support within the community for mental health and also onthe strategies that the trust will be administering?

I was interested in how the trust engages with patients and the public and if there were staff at guys who has a focus on carers. Sarah mentioned that they try quite hard to actually involve patients and carers in sort of the redesign of pathways and redesign of services. This is done via the patient and public engagement team. It was also mentioned that there has been a number of staff trained up to become what’s known as mind and body champions, the Mind Body Program from kings health partnerships, has done a lot of training for keep just staff focused mental health awareness. So they have mental health champions and obviously part of mental health is care awareness. It will be good to see if GSTT can work with the joint Lambeth and Southwark MH carers forum as their new Mental Health lead continues her role, as the forum aims to raise the profile of mental health carers.

Southwark inpatient carers lead update

The last update was from David Meyrick who is the Southwark carers lead for inpatient wards. David reported that all the Southwark Wards are open, were wards that were moved to other boroughs are now back in Southwark. There is other good news that the carer champion roles are becoming more relevant and active. SLaM have also just finished a project on one of the Wards listening in action project. This has been a project to make the ward more family friendly. There has also been an improvement to the waiting area the visiting area.

The waiting room has been redesigned search cordoned off to give a bit more privacy and social distancing plus two families can to visit at once rather than a portable partition so it’s a bit more than welcoming and relaxing area and and also a lot of work on the leaflets and literature produced for carers and help make it more informative and more family friendly from that perspective.

We also had an update from carer peer supporter Annette on how she is co-facilitating carer support groups online and how the peer support role empowers her to support families and carers.

Lewisham BAME MH Carer Forum June 2020

10177241_747738765268892_5890142387668348507_nIt has been a busy month for July and I have been meaning to update on my Lewisham BAME Mental Health carers forum for June. I have to honestly say I have finally gotten around to do this, even though the July BAME forum is tomorrow. Lets first give a quick introduction of this forum.

I can feel it can be difficult for patients to know about what mental health services are in place in a certain area, it can be even more difficult for carer’s to get an idea what is out there, especially if there are forms of mental health stigma. but this move in BAME community, sometimes the BAME community can go through a hard time and that does increase mental health issues as opposed and also problems with services that can be seen that we need to make made aware of and how we can work together.

With these issues it helps to have a forum that allows engagement from services. That’s because services change often, especially health services, mental health services and Local authority services. The forum also allows a chance for carers to get some forms of education to learn from those services.

For the June forum we had my MP Janet Daby attend, along with Josephine Ocloo who is a Researcher, and also ‘Patients for Patient Safety Champion and also on the National Patient Safety Steering Committee for NHS England. We were also joined by Donna Hayward who is SLaM’s Service Director for Lewisham mental health services. We also had Sophie from Healthwatch Lewisham who is the patient experience officer, talked a bit about her role as in to listen to residents on their views about health and social care.

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MP Janet Daby

Janet thanked us for the invite to the forum so that she can update members and hear from BAME carer members. She was happy to see lots of familiar faces on the forum. Plus she felt that the forum was important for carers from the BAME background to be supported through engagement from services.

Janet certainly agreed that there can be stigma in the BAME community when it comes to mental health sometimes there is an embarrassment or shame around stigma or sometimes even people don’t really recognize or or get a sense of how they will and and can be supported. Janet Daby updated the forum to also speak about the Coronavirus where Lewisham has provided any support. Janet mentioned that she recently met with the chairman of SLaM sir Norman lamb and is are going to have more ongoing conversations in futher meetings.

Janet feels there’s so many things that she has spoken to him about and but the main one that I spoke to about was the lack of of professionals in engagement with family members where somebody has a mental health problem. There is an issue regarding the lack of empowerment for family members to be involved with the care and the decisions of their loved ones where they’ve got mental health problems. She feels health professionals should be embracing that relationship, rather than being surprised it exists, and also rather than making decisions without having those conversations with those family members. There needs to be more training on getting health professionals to engage well.

She has lots of concerns around where people live in overcrowded situations or where people live in unsuitable conditions and how that will exacerbate the feelings of them being isolated, just as carers are isolated during the coronvirus infections. With all this problems it is no wonder that mental health issues are incresing. Janet mentioned she was also concerned how young people were coping during this difficult period. She felt hard for those people who are unable grieve for their loved ones when they haven’t been able to attend funerals or do their usual goodbyes.

She feels it is really important that when the government is looking at this and she will do her hardest to increase the voices of the BAME communities being heard. Especially in accessing the right type of therapeutic support. Janet mentioned about the £5000 application funding scheme, which was also advertised off her Twitter account where carer members asked her specific questions.

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After a while, we got several excellent questions from the carer forum. Where one carer member asked about if the government understands the difference between a worker and an unpaid carer. He felt the reason why he had to ask was because he never hears anything from the government to say what they’re going to do for the unpaid carers who are suffering in silence at the moment. Janet did agree more could be done to raise awareness to the government about carer identification.

This is not only a problem with carer identification but also BAME as there has been so many reviews including the McGregory review, the Windrush scandal review and others. Janet queried when will the government get on and work on the recommendations of these reviews. She felt that we do not need people’s sweet words or their facial expressions of concern that they really care about the community, because if they cared about our community, then they will put these recommendations in place. She feels there is a lack of BAME people being at certain reviews and it is so important BAME communities keep telling their stories, but with these recommendations especially from MP David Lammy and others hardly any get passed.

Going back to my Lewisham BAME forum, I am open for patients and service users attend and we got a good question from a service user who does peer support on some of SLaM wards. She feels that patients get a bad deal when it comes to their ward rounds. A good example is there can be so many people at those ward rounds and that there is a misrepresentation of that service user needs. There is a lack of patient advocates to be there as a voice to represent them and not for other people to tell them.

Another carer talked about her mother from a different culture and background and felt that while her mother is in hospital, there is some difficultly visiting her. Some other carer also from a BAME background spoke about the reasons why she feels the BAME community gets so many mental health problems she was also unhappy about the levels of BAME community at the front line contracting COVID-19.

Janet responded to the forums queries and questions and agreeing that the BAME community should not be pigeonholed and stigmatized with labels. Plus the problems of PPE not fitting BAME staff and the problems of poverty, which can lead to lower immunities. She feels BAME communities need more access to education, housing and especially health. She also feels there needs to be prevention of the police racial profiling of our community and that there is also a problem with the rise of the far right in the UK.

One of the service user members of the forum stated that she was at another meeting yesterday and felt that we need to stop thinking as a separate unit. We need to think of us as a big community, and this is some of the things she find as a service user as well, is that there’s that separation of hospital care and community care. She would like to see those two come together as a whole and that the care that you can get to can be continuous and not separated.

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Dr Josephine Ocloo

We next had Josephine Ocloo speak about her research and then Donna Hayward from SLaM give the forum members service updates. Donna felt it would be appropriate to talk more on BAME cultural awareness. Donna mentioned that although SLaM knows that a lot of their patients, carers and staff. She feels like there could be more discussions on what what it’s like to be black, or from a BAME background.

She want people’s experience of mental health to be different, but Doona feels unless we have the conversation about diversity in a very open way, SLaM may be in a position of being defensive and still feels we are not getting it right for our community.

There is a problem in the NHS, that we revise strategies and that we talk about research, where lots of things that the forum raised she recognised. Donna mentioned she recently had a meeting with a commissioner who said that SLaM needed to do a research project. Donna felt that we do not need to do a research project. What SLaM needs is to know what the issues people tell us and how those issues start. We get don’t don’t spend 10 grand doing a research project and spending 10 grand putting something right.

Mental health tends to be thought of as it shouldn’t be. Mental health is across all SLaM’s services and sometimes SLaM don’t always get it right. Donna mentioned that she is one of those people who’s very vocal about that. She feels mental health is in our community across our community and across our services, including our GPS, including social care, including education

This is the update for June’s Lewisham BAME MH Carers forum

Caring through stigma

 

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Hello fellow carers. Every so often during writing blogs off my carer forums, I tend to write about the carer experience. In this particular blog I want to write about stigma and make unpaid carers aware of what stigma is and the damage it can do.

Just to make things clear that when I talk about carers, I am not talking about NHS workers or nurses. I am talking about people who care for someone severely unwell in the family, or perhaps caring for a close friend. I am not saying that some in the NHS are not caring for someone in the family, but I want to cast the net out and bring in those whose identity is blurred away.

This blog site focuses a lot on mental health carers, so I do not want to stray too far from them. As a reminder a mental health carer is someone looking after a person with mental health needs. This could be a form of psychosis, bipolar, depression, Post-traumatic stress, OCD and so on.

Depressed woman sitting on stairs

Unfortunately with mental illness, stigma does strike at the heart of those affected. The stigma can affect both carer and ‘cared for’. Many may ask what is stigma?

The Shame

It does not take long to google the word ‘stigma’ and see it linked to mental illness. Stigma can involve many things, but often stigma is linked to mental illness.

Basically stigma is Fear and anxiety about a disease that can lead to negative attitudes and beliefs toward a person and their characteristics. This can be down to others not understanding mental illness be it a lack of education, awareness, fear or worst of all ridicule. With MH stigma, suffers of mental illness begin to lose friends, family support and can be ostracized from the community.

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The stigma often can hit the sufferers family and close relationships. Some in the family may stay clear from the situation leaving the most concerned to take on the carer role. Some in that family might even actively practice stigma and even then the sufferer of the illness might be stigmatised through their own illness as they will not engage with health and social care services.

Unfortunately it can be that the mental illness itself can blur how the sufferer understands what is effecting them. It is as if the mental illness makes it harder for the person to come to terms with what they are going through.

When I was caring for my mother, I noticed over the years how many friends withered away, even some neighbours kept their distance. I myself experienced a lot of stigma as some laughed at me when they realised I was caring for someone with mental illness. During the early years my mother became sectioned often as she struggled to cope with medication and support. Many would see her taking to the hospital by the police or ambulance and would gossip.

The continued experiences of watching my mother go through the rotating door of the mental health inpatient ward took its toll and I got tired of trying to educate and explain to others on reducing negative views. At one point, even I kept away from my mother as she took out her frustrations on me.

With no where to turn, I withdrew into myself and battled stress, depression and anxiety and mental illness can be catching. With a strong carer focus, I managed to look after myself and spare enough energy to continue to look after my mother.

Would not have it any other way

Looking back at it, I can be proud as I would often hear many let that stigma drive away those close to them. I stood by my mother until the very end as a son should do, although I am aware that not all carers can do this and there is no shame in walking away, because sometimes health and social care cannot provide that support.

There was always a risk that the stigma and lack of support would push me to becoming the next mental health patient, but I had to be strong. I had to keep working to help in bills, providing care and support, holding the family together and setting an example to fellow MH carers.

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I will not lie, the experience of care has worn me down and I do not get too close to others. There are some things I cannot explain as yet because it will bring painful memories to the surface. I can say this though that time and patience does help.

If I had to go through it all again, I probably would and I most likely would have done quite a few things differently.

There is no shame

As an educational part of this blog post, I would like to mention there is no shame in caring for someone with mental illness. It does of course depend how unwell they are and you as a carer will need support. It is advisable get as much support from health services, friends and family.

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You of course will have to be strong when stigma comes your way, many just do not understand. Many do not realize that mental illness is very common as we all suffer from anxiety, stress, anger and depression. It does not take long to notice that a tip over the edge can lead the sufferer to severe mental illness.

I certainly have more patience with those who have mental illness and refuse to laugh and joke when I see someone in the street battling the illness. It can happen to any of us or those we are close to. There is no shame in mental illness and with the corona virus epidemic, society will have to get used to mental health because there will be a lot more to deal with.