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Joint Southwark & Lambeth MH Carers forum January 2021

Welcome to the January Southwark & Lambeth joint Mental Health carer forum. The forum is aimed at carers who are caring for someone with mental illness, but they want to understand what mental health services are planning and also what carers can get access to.

For the speakers for this forum, were as follows.

Josh Simpkins – Lambeth Carers

David Meyrick – SLaM Southwark inpatient ward carer lead – Triangle of Care

Karen Persaud – Carer rep for the Royal College of Psychiatrists

Yasmin from Lambeth Black Thrive

Josh Simpkins Project officer for Lambeth Carers presents

After Josh introduced himself to the carer forum, He provided a quick update on the Lambeth carers card. Coming this February Carers Hub Lambeth will have a couple of workshops and online events happening. It will be just a Q&A sessions on the Lambeth Carers card and its functionalities or if there’s any issues or anything like that, that is really struggling with, it’s a good time to sort of bring it to the group, we can discuss it, obviously. And we can answer, I can answer any sort of questions that pop up. So it’s a no formal informal chat.

And hopefully, I can, you know, brings people together that are on the scheme. And to sort of discuss the Lambeth carriers card and things like that. And the second group is an emergency planning workshop, which will be the 28th of February. So towards the end of the month, and where we’re going to run a workshop to help carers I guess, plan, and I guess, make a contingency plan in the unlikely event of an emergency. And so yeah, we’re going to go go through all those emergency planning steps. And, obviously, carriers who are signed up to the Lambeth curious cat, they would have received a welcome pack with a emergency planning resources, which includes templates and flyers and things like that. So yeah, so we’re going to be running that workshop 28th of February.

Lambeth Carers welcome packs are still still going out. Obviously, there’s a bit of a delay just because of staffing. And you know, heading into the office due to the due to the current lockdown, but and we are still sort of pushing out our welcome packs. But yeah, as I mentioned, it’s a slight delay. With that. And cool, I’ll quickly go on to the carriers, hub Lambert, so not too much to update as usually as business as usual with our groups. And obviously, we have our regular mindfulness sessions every Wednesday. And James, my colleague runs the mental healthcare support group, and which is monthly. And I think the next one is next Thursday. And just the last update from me, we are going to be speaking at slams, cares focus week on the eighth of February. And they’ve sort of asked us to talk to the impatient team. And so we’re going to give them a bit of an update around what we sort of do things like that. But yeah, that’s that’s it for me.

Questions from carer members

There was talk among carers about Guy’s and St. Thomas’ mental health focus group and some were wondering if that trust actually had any mental health carers at their focus group, some mental health carers feel it was good that trust help a focus group but feel its approach is completely patient centered. So I asked Josh for any updates on Guys & St Thomas focus group on mental health stigma.

Yasmin From Lambeth Black Thrive Presents

Yasmin mentioned It’s the first time she has been to one of these sessions, but was happy that I invited her after she connected with me, which was last week on the Lambeth black thrive employment project, this is an opportunity for black Lambeth residents to get involved or black Lambeth carers to get involved.

Click here on the Lambeth Black Thrive employment project

Yasmin was happy to drop some links into the online chat, so the links can guide attendees with a little bit more information. Yasmin was also kind enough to add her email in the chat. Basically, Lambeth black thrive is a Lambeth partnership and it works to address the mental health inequalities that black people in London face. Lambeth Black Thrive do a whole host of different projects. The project that Yasmin works on currently is the employment project, which is funded by Guys and St Thomas’ charity that began in March 2020 and ends in June 2022.

The aim of the project is to improve employment outcomes for black people in Lambeth with long term conditions including mental health. So Lambeth Black Thrive are embarking on a whole range of routes to both support black people who are unemployed with Mental health conditions but also those in work. This piece of the project that Yasmin feels is specifically relevant to this carers group is the community and grant making aspect of the project. So, the black thrive project is supported by a funding pot of 300,000 pounds, which was managed and distributed by a community working group. So the working group is made up of black Lambeth residents with lived experience of either having a long term condition themselves or caring for someone with a long term condition. That group’s main responsibility was distributing that 300,000 pounds to individuals groups or organizations rooted in Lambeth, who are going to run the pilot projects with black Lambeth residents with long term conditions to try and help them improve their employment perspectives or employment outcomes.

So back in November, Black Thrive opened the grant applicantions to applicants, they received 84 applications and the working group decided to fund eight projects. So now basically, where they are at is that they have launched these eight projects in Lambeth, and all eight of them are now recruiting participants. To get involved, there are a whole host of different things that people can get involved in, there’s radical self care, there’s some projects that are offering paid employment, there’s some projects that are offering employability skills.

Yasmin mentioned that she got in touch with Matthew Mckenzie, because she thought that at Black Thrive, they wanted to speak directly to carers, or to people who then can pass on the message to to carers in London, because they didn’t want the opportunities to get involved in these projects to go to the same people. Perhaps Black Thrive thought that there might be people who fall outside of traditional referral routes for support or who don’t have access to them.

Yasmin feels that some people don’t know about them, who might benefit or might know somebody that benefits from some of the projects that are on offer, all of the projects are free. Even though they are pilot projects or with small groups, maybe 1015 groups of people. Yasmin finished up saying it could be you yourself as a carer who wants to sign up, or the person that you care for might want to sign up, or you just might know someone. Black Thrive would be really grateful for members to spread the opportunity and the opportunities with throughout your networks.

David Meyrick Presents on the Triangle of Care

David opened up his presentation mentioned that the Triangle of Carer characteristically, is the culmination of the carer, the patient and the mental health professional all working in partnership, with a high focus on carers. The Trust signed up officially to the “Triangle of Care” but it should be accredited. This means that SLaM will have to complete the audits. However it is a quite big piece of work.

However it can in his role in improving things having carers for the impatient wards actually very welcome the scheme. David mentioned he was also looking forward to getting stuck, but back to the audit it is a six step audit and it’s pretty much the ethos of the honest reflection of the team’s work with carers, and to see if that is really working for carers, because its really what carers want. So the audit is not a tick box exercise, it’s not about pass or fail, it runs on a “red, amber and green scale rating”. So if you hit above 80%, and you’re in the green, you then have to evidence that you’re meeting that target and how you keep it consistently above, if you’re below that target, then you would need to put in action plans of how you want to improve it.

So a quick overview, The six key standards state that:
1) Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2) Staff are ‘carer aware’ and trained in carer engagement strategies.
3) Policy and practice protocols regarding confidentiality and sharing information, are in place.
4) Defined post(s) responsible for carers are in place.
5) A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.
6) A range of carer support services is available.

David continued that in the first year, SLaM will have to audit all their inpatient services and their crisis teams. Then in the second year it will be the community teams and other services SLaM has. Then in the third year it goes back to the teams in first year (Inpatient wards), and they have to show that they meeting the targets. Then the fourth year goes huge etc.

David pressed that what he really likes about it is it’s an honest reflection to see if the work SLaM is doing is what carers want to actually work for them. It is not about pass or fail. It’s just trying to genuinely improve things that come towards carers who wish to be part of that triangle. It is also what he is trying to do in his role in creating the teams that support carers. It is of course everyone’s business is not just left to one person. It’s not just left one nurse or doctor but the whole team chips in.

QUESTIONS FROM FORUM

I asked if there will be promotion or any promotion in regards to how SLaM are signing up to the triangle of care? And where would where would it be?

David responded that Gabrielle Richards, who is SLaM’s carer lead for the whole trust, he will raise that with her. David continued that he is not very much involved in that sort of external communications to be honest. However in terms of opportunities for carers to be involved then Yes. David feels the most obvious point of involvement would be through SLaM’s (South London & Maudsley’s) involvement register. Once you’re signed up to the register carers can get paid for their time for that day and engage with trust activities. So typically, carers being on interview panels, focus groups, and can help co produce and training staff. So he is sure there will be opportunities for the “Triangle of care” audit and that would be advertised with the involvement register.

Another questions from another carer member mentioned who are you going to be auditing? Would it be existing carers that you already have within your services? Or are you reaching out further to bring people into that triangle? e.g. carers who are not yet identified, but who are caring for people out in the community.

Karen Persaud – Carer rep for the Royal College of Psychiatrists Presents

Karen started off by saying that she has been a carer for many years, and she has experienced a wide range of different mental health services. Whilst trying to support her cared for. She has experienced everything from early intervention, child and adolescent mental health, General adult psychiatry, rehabilitation psychiatry, and forensic psychiatry and over the years, she is at a loss as to why the services didn’t actually respond to the needs of patients and service users and carers as well as the services should do. She became aware of the great big gaps and transition gaps in service provision, and the long term impact this has on individuals. They’re not just their mental health and well being, but their social mobility and their potential to live fulfilled happy, long and productive lives. She feels because that there are inequalities in the system. The treatments affect physical well-being as well as mental well-being, and both impact on carers, service users or patients. Karen feels all suffer the impacts of the services. So, as a result of what she experienced her desire is to try and make things improve.

She has became quite proactive in campaigning and getting involved in as many different forums as possible to try and redress the shortcomings the gaps in service provision have become, and also in mental health inequalities. Subsequently, she joined the Royal College of psychiatrists as a carer representative and she works for the Royal College of psychiatrists on a number of different projects, the NCCMH (National collaborating Centre for mental health).

Recently, they completed the community pathway project, where we worked on the Mental Health Act review. Karen also worked with the National Institute of Health Research as a honorary research associate and they published papers in medical journals about the impact of mental health and crisis on particularly carers because there wasn’t that amount of information out there about the impact on carers in particular, of being responsible and having to deliver more or less multidisciplinary team service without any kind of training, or support, because none of us actually choose this.

Karen explained that its a way of being kind of like having to become experts by experience. So this is how she got involved in various different aspects of trying to change the system. She is very pleased with the work that they have been doing with the Royal College of psychiatrists, because all together they have managed to get quite a few changes agreed at government level, these are all slow burners, etc. But they’re essential pieces of policy and strategy that needs to be, a process that need to go through in order to facilitate the change.

We’ve are now commited to reduction in out of area placements. Plus the white paper on the Mental Health Act review also highlights, the changes that need to be made around inequalities in mental health services. So we don’t want to just rest on our laurels, we actually want to apply more and more pressure for more funding, because a lot of the issues that we actually experienced is as a result of funding gaps, lack of knowledge on the behalf of commissioners and lack of understanding in what carers face at a local level.

So Karen and her group wants to apply a bit more pressure and start picking up the pace of the reforms that their trying to get into place. The thing is, they got the research, they have some the data and they have got the draft strategies, policies and frameworks, and all of this work is underway. But where Karen feels where they lack a bit more meat to the bone is the human story, the human side of things. So what she is asking is if there is anyone out there it be a patient, service user or carer, who would like to add their weight to their campaigns, the arguments and the raising the profile of mental health services. The team is looking to gather stories of lived experience and there is a form that she sent to Matthew McKenzie.

Which I have placed here – Document for Project

The form is quite a simple form as it has no more than 500 words, but in all honesty Karen feels 500 words wouldn’t do many of the stories that much justice. So she feels participants need not be restricted by the 500 words, if you feel like you want to contribute, please do contribute. Karen is looking for stories of both good experiences where things have worked well, as well as bad experiences. She wishes to be able to shine a light on those services that are actually going above and beyond and doing a little more than, you know, what is routinely expected. Karen also wants to shine a light on where the services are actually making things worse, a lot worse for, you know, service users and carers and patients, because of their lack of commitment and professionalism.

Everything is anonymized. So no one will be named in the sharing of the stories they simply use to add the human perspective to the arguments that are going in front of commissioners, and service providers.

The next joint Southwark & Lambeth MH carers forum is on Friday, 26th February 2021 from 16:00 pm – 17:30 pm

Book here to attend forum to attend this forum

Connecting with other Carers

Matthew Mckenzie

Hello again everyone and thank you for stopping by to check out my blog on caring and mental health.  As a reminder this blog is mostly about carers who care for those suffering mental health problems. There are still many parts of the site that is under development and when I am not often blogging, I am bound to be out and about trying to raise awareness or engaging with those interested in the carers world or mental health.

My background is that I am a carer for my mother and have been a carer for around 13 years or more. Sometimes my mother is well enough to look after herself, but unfortunately there are times when I have to step in, especially when I am not requested to do so, its practically like a leap of faith how things will turn out.

When things go wrong within my caring role, that’s when I figure on working out who to turn to or where I can get any support. As a carer you cannot just go anywhere to look for support. You would have to find someone or something specific.

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Usually a carers centre is a good idea to get any support, usually most London boroughs have a carers centre. I am over in Lewisham, so my carers centre would be Carers Lewisham, for others in South London it could be Southwark Carers , or Carers’ Hub Lambeth  or even Mind in Croydon.

Why go to a Carers Centre?

There are several reasons, but the first would be getting advice and information, which I would rank very high for carers like myself. The next being emotional support and a chance to meet other carers, although carer centres offer a lot more than I have mentioned. You can always look one up and check out what they provide.

There are many other carers centre’s and they all offer carers just the thing they need in order to cope as a carer, get information and just a place to hang out.

I have popped over to Southwark Carers, Mind in Croydon and plan to check out the Lambeth Carers hub forum next week, which is on Thursday the 10th of July.

So ok, one of the things I like to do at a carers centre is speaking to other carers, but why? Well again there are several reasons and to make a long story far shorter, I ll list them out below.

– Learning from other carers
– Speaking to carers who come from similar environments
– Feeling I belong somewhere
– Answering their questions
– Having someone to listen to me
– Being another carer who listens to carers stories
– Having some confidential space

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Let me just elaborate on a few of these reasons, just to give some people an idea of why such activities are so important for me as a mental health carer.

– Learning from other carers

When I first found out I was taking the first steps of my 1000 step journey as a carer, I just did not have much of a clue of what I was doing. Yes, I was given advice, but at that time I could not digest such information, I was suffering and I felt so distant from people.

Eventually I decided to go down to my local carers centre after phoning them up. The carers centre staff was so understanding and I just needed someone to talk to.

After a while I felt more at ease in talking at the carers centre, but it soon dawned upon me that other carers had been through the same journey, they were listening to my story and offering some comfort and advice. To be honest, these carers were almost putting up signposts on my Journey along road, which I could follow.

I never did set out to learn from other carers, but this is something that sunk in each time I spent the time with those who have shared my journey.

– Speaking to carers who come from similar environments

Speaking to carers is fine, but remember there are many different types of carers out there and one day I hope to do a blog post about such carer roles, but lets say you are a carer caring for someone who has dementia, or you are a young carer, or a mental health carer? What then?

You may want to learn even more by speaking to carers who are caring in your field. Usually carer centre’s have drop in groups for carers of different fields. I always advise you check them out when you can, as a carer you can learn even more from such specialist groups. You just get that extra relation factor, if you know what I mean.

Feeling I belong somewhere

There are times when a carers journey is lonely, be it at home, the workplace, heck! even in society. Carers can be ISOLATED. I am not lying, caring is something almost done for free, because we carers cannot bear to see our loved ones suffer, but so many expect us to do this for nothing and yet it benefits society. We all want caring communities right?

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Ok! ok! enough of the rant, again I sometimes drop off to carers groups or carers centre’s. This is because I may feel that I cannot get out and speak to someone about my problems. Even once a month is good, never feel you have to cope on your own as a carer. It is so easy for carers to suffer from stigma, that being carers feeling embarrassed by caring for someone suffering from devastating illnesses.

– Answering their questions

After spending some time on my journey as a carer, I began to get just a bit more confident about my role. I knew the road was straightening out. I could see the signs and signals, I could read the directions. Then on my path I met other carers, they shared their story with me and I listened to them. I felt I could almost relate to them and understand fellow carers.

It was not long before carers kept asking me “What do I do?”. At first I was silent, because I did not want to give bad advice, but eventually I told them what I would do if I was in their position. Of course its always better for a carer to seek professional advice, but then sometimes a carer will ask another carer for information, perhaps its human nature.

We all want reassurance, we all seek others on the same path as we are and who could give us advice, hints or tips.

I hope I am answering some questions with this blog, I just hope this blog is a map for other carers who find themselves on a similar journey. All I ask for such carers is whatever you have learnt, feel free to share with other new carers, but do not judge them. We are all on a unique path for our Journey.

– Having someone to listen to me

As a carer for so many years, there are times when I just want to let it all out. The frustration, the anger and fear.  The Regret, worry and concerns. Its bad, so bad to keep it all inside. I just want someone to listen to me. I am sure if you are a carer reading this, do you not feel the same at times?

There are times when people speak to me and I cannot get a word in, other people know it all and perhaps they do know it all, but what about the problems that can never be solved? What if your world is falling apart? Time is drifting away from our loved ones and us carers have got to let our emotions out somehow.

The good news is at carers centre’s they usually have counselling sessions, please take advantage of them.

I used to have counselling for myself and some of it worked, it might not be for everyone though, but to have someone listen to you without judging can do you a world of good.

– Being another carer who listens to carers stories

I talk and write nearly all the time, sometimes I feel as if its therapy where I let my own emotions mark the page and also share the wisdom from my mind.

However there are other ways to heal and one of the best ways is just being there. As the saying goes “If you cant with the one you love, then love the one your with”, was that not a verse from a song?

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I guess you know what I am getting at, there are times when you are healing another carer just by acknowledging them, by listening to their story. I have been on carer groups run by a mental health trust being “South London & Maudsley“, at times their carer groups offer an excellent session of healing. We listen to other carers and acknowledge them, as we learn from other carers, we learn about ourselves.

– Having some confidential space

There are times where you want to get away from caring. You ARE you!!

Its not like you were born as a carer, even though you may have taken on such a role.

We all need some space and to care almost 24 hours without having such a space is asking for disaster. The time to get such space can be again at a carers center like the ones I have mentioned before around South London, or perhaps one in your own borough.

I have even heard of carers even forming their own groups (peer support) and sometimes a carer may just want to go out by themselves to reflect and think things through.

Having confidential space should be a refuge of healing, a sanctuary that us carers can call our own. In order to help our loved ones, we should also do ourselves a favour and rest and heal ourselves with our own confidential space.

I am not saying this will be easy, sometimes it depends on how bad things are for your loved one, maybe you cannot bear to leave them alone for some time, but its vital for you to at least think about your own confidential space.

* Carers Groups

I have mentioned carer groups a number of times and there are so many activities that can happen at such carers groups. Carers groups can offer the following ways to connect to other carers.

– A place to relate to other carers.
– Information on services and updates.
– Learning from other carers.
– Sometimes you can have speakers come along and do a talk about a subject.
– A place to eat and relax.
– Update other carers on what you are doing.
– Raise concerns when its an acceptable time to do so.

There is so much more such carers groups can offer, I am sure some have skipped my mind, but if you as a carer do not belong to such a group, again check out your carers centre or maybe your mental health trust provides one in your area.

* Reading Carers stories

Have you checked out Carers Trust? Or Carers UK? They have blogs and stories from many carers. You do not have to be physically present to connect to other carers. Sometimes I have read blogs from Mind or Rethink Mental Illness. You can learn so much from carers stories or those similar from your loved ones illness.

* Connecting with other Carers at Events

There are many events that I have been to and although most of these are mental health events, you will get the odd carer event every now and then. Luckily South London & Maudsley have a carer event coming up for mental health carers in South London. This being the carers “Listening event”, which takes place on the 18th of September 2014 over at Prospero House. However why go to such events? The simple reason is it offers another opportunity to connect to other carers.

Some events can last all day, while some last perhaps around an hour or two. These events are usually tailored to the type of carer who attends them. If such events are successful, then its possible to form a network of carers supporting each other and engaging with the health services. Carer events are the place to be seen for carers and you can learn so much being at such events. Do not be put off by being surrounded by health professionals since they are their to learn from you as well, which is probably why the event taking place in September is called the “carers listening event”.

If your in the North, East or West of London, UK or in a different part of the world, try and attend a carers event to get yourself educated and connected.

* Connecting to Carers Online

I guess we have arrived at my favorite part of connecting to carers. We all come from different backgrounds and my background is Information Technology, notice the word “Information”? I like sharing my skills, knowledge and tips as information via technology. Its free or fairly cheap, its quick to access and you can have a global reach. Reading my blog? well that is because your online. Notice my twitter channel? well that’s because you are connected.

Connecting to other carers online need not be difficult, a quick Google search can bring up a wealth of opportunities, but be aware not everything is true online and its always good to seek professional advice, however the power of being online is the range of CHOICE that it brings.

* Celebrating with Carers

Sometimes we do it to ourselves, we sit back and fall into caring. Us carers just place ourselves last, its in our characteristics, have you met someone who calls himself a carer place themselves first before anyone else? Well ok, perhaps you have, but I am sure more carers just sit in the shadows doing what we do best without making a complaint, or making a statement or even engaging.

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Us carers need to connect to other carers, we need to celebrate who we are and make a stand not only for ourselves, but for other carers. My comrade in arms Bridget Jones and myself have just been nominated for carer of the year 2014 from the Royal College of Psychiatrists.

We may or may not go far, but for sure I am honoured and proud to have such recognition and I am not going to the ceremony looking to win, but going there to celebrate. This celebration is in order to connect with carers and mental health professionals.

Us carers need to stand out from the shadows to form a network and be counted, we sometimes just fail ourselves and plod along caring hoping someone will notice our efforts, but its not always like that. Its time to connect and the time is now.