Monthly Archives: February 2021

Lewisham Mental Health Carers forum February 2021

Here is the update for the February Lewisham Mental Health Carer forum. The forum is aimed at those who care for someone with a mental illness. Most who attend are unpaid family carers. For this forum we were joined by the CQC inspector for GP surguries and Professor Luke Clements from Leeds University who is an expert on carer’s rights.

As for the members of the forum, carer members were from South West London, Lewisham and Greenwich where I often host other carer forums or support groups. We were even joined by West London NHS trust staff who were interested in how a carer led forum runs, plus also SLaM early intevention staff.

The CQC inspector engages with carer members

Susan George the inspector from the Care Quality Commission mentioned that a few months ago I kindly invited some inspectors from the Care Quality Commission to join the BAME carer forum. Originally, I invited inspectors from the CQC’s hospitals Directorate, and also the Adult Social Care Directorate, howvever Susan is from the PMS primary medical services Directorate who inspects GP surguries. Susan is very interested in health inequalities and while she is an inspector, she did mention it has been a challenge doing inspections. She feels that they haven’t been able to listen to people, listen to patients and listen to people who are carers who use GP services for a while now. Its obviously because of the pandemic, it’s become more difficult for people to access services and also to express their experiences.

One carer member was concerned about how the GP surgery contacted the person she cared for about the COVID vaccine. The person she cared for received a text message for the vaccine. However she felt he should have also get a phone call. So in the end she phoned the GP surgery and they said, “Oh, he should have received the text message anyway”. In the end the carer had to check and make an appointment for him. She was wondering if service users who are slightly unwell get the mobile message, how do carers get involved if the patient does not respond?

The CQC inspector responded that their involvement in terms of the vaccination hubs and clinics, are through the contracts or agreements for those are with the primary care networks “PCNs” and the CCGs commissioners. So the CQC don’t regulate that side of things. But what the CQC do look at and regulate is patient safety and infection control. So for example, if a patient said that, there was too many people in clinic that people were queuing and it was unsafe, or that there wasn’t any hand gel then that’s where the CQC could intervene directly. So the way that GPS are running their hubs is for the PCs and the CCGs. To organize and arrange. Since the CQC don’t have responsibility in that area. The other area which the CQC would be interested in, is how carers are able to access services. So if there was negative feedback about such experiences, it’s something that CQC could feed back to the practice.

Another carer member asked about an issue regarding a symptom and they had to send a photograph to the GP to look at the area. They came back with recommending some kind of a cream, which was absolutely the wrong kind of diagnosis, The carer felt that they don’t think being able to diagnose or a photograph is sufficient when you are dealing with something like that. So the carer wascurious as to how to overcome such things, whether it be a video call or some other means of being seen
in a more realistic kind of setting to deal with those kinds of issues.

The CQC inspector responded by stating that as inspectors they are not able to comment on individual prescriptions or treatments because that’s confidential, it’s between patient and their GP although she does know that it’s a huge change the move to online only consultations.

Susan mentioned that there is difficulty for some people to take photos upload them from the doctor and her advice is always to be vocal and complain or raise the issue directly with the practice. They have to respond within 48 hours and they have to start a process of investigation. So if there is some aspect of your care that you weren’t happy with, please contact the practice, feed it back to them because they are obligated to respond and investigate the issue.

Another carer member mentioned about booking an appointment with a GP, they felt the experience needs to improve. They felt if they was to get the person they looked after to go on a phone to book an appointment, they would never get one, which is frustrating. Especially the wait times so the carer thinks there needs to be a better way of people engaging with their GP.

The carer member also mentioned that we do need to ensure that vulnerable people and people who are carers who are also patients of GP surgeries, or having their needs met, need equitable access to services. She felt that she thinks the pandemic has thrown up a lot of shortfalls in that area.

The CQC inspector felt that members should try be active and make sure to complain, if you’re not happy with something, e.g. being your treatment or care, please get in touch with the practice, and complain or give them feedback so in the end they are demonstrating that they’re responding to patient feedback and that is something the CQC look at as inspectors.

There was a great discussion about how receptionists or GP surgery admin needed to be trained adequatly on dealing with patients and carers, perhaps some sort of GP wide training curricum.

Professor Luke Clements Presents on carer rights

Prof Luke stated off explaining that as a lawyer he has been a solicitor for a very long time, but really most of his life now has been as an academic, he runs a research unit, which is funded by a charity, focusing more on disabled children and adults. He does write widely about disabled people and carers rights in particular, and he plans to go through some of this at the forum. Prof Luke mentioned he also was the Special Advisor to the joint parliamentary committee scrutinizing the Care Act.

Prof Luke Clements stated that for the carer forum he will respond to the question of who monitors the Care Act and discussing what carers can do to empower themselves regarding carers rights and their dealing with the council or the NHS. Luke pointed out his website for members to have a look at after the lecture

http://www.lukeclements.co.uk/

Luke stated that if you go to that site, you’ll see free to access some stuff. It’s just because he gets a lot of inquiries, so he tends to try and put stuff up on his site. So there’s a lot of stuff on the Resources tab about how you can challenge local authority or NHS decisions. On the right hand side there is a template that you can use and on the left hand side, there’s the just the general index. Plus lower down the website you’ll see information on challenging reductions in care packages.

There was more explanations on his website being that publication’s tab, there are all the books that are written most of them are freely available. People can get a book on carers and their rights, which is only a couple of years old. It’s the seventh edition. The book has got a chapter on mental health and it’s got a chapter on issues about 100 pages long, which you can download for free. If you click on that section of the website then book loads, and you can access that book and other books that are useful. Professor Luke warned another book isn’t the book that you want to buy since It’s a big book and it’s over 1000 pages long. However it’s the sort of in a leading book on Social Care Law it’s got everything, and it’s got far more than you ever need to know. But it’s useful to get a footnote or something like that.

He also has toolkit that was produce with the charity that funds him and it is a really useful document, which carer forum members can download that free from their website. Although it’s focusing largely on parents of disabled children, it’s just as relevant for carers of adults. It’s only about 35 pages long, but it’s got precedent letters at the back, it divides problems into different ways.

Professor Luke mentioned that he also has a new book he has just written, which isn’t free, and It’s a little expensive, but it’s about families. The people he tends to work with don’t have one set of problems. They don’t they’re not like the standard people lawyers deal with, e.g. such people do not want to divorce or buy a house, they dont have that single issue. The people that he has spent 40 years acting for, as a lawyer don’t have that one problem, they have a whole cluster of problems. So their life in a way, because they have these clusters or multiple problems. They live and bump into the law all the time and so it’s a sort of critique of the way the system operates, but it is also a critique of the way that public bodies operate as in the NHS and social services.

Professor Luke continued to mention that if you click on lecture series, then there is also a lot of YouTube stuff. Plus there is a much longer talk about carers and their rights. There’s also talk on carers and identity, which was done recently about the failure of equality legislation to deal with carers. There’s is also a talk he did a while back, but it’s just as relevant today on carers and human rights, because due to time he was not going to do anything more than touch on that subject today.

Prof Luke feels that the NHS actually has very few direct legal duties, while the social services have stacks and stacks of duties towards carers, but what all the evidence is showing is that’s its not really translating into practical benefits straight off. Although, in theory, carers have a lot of rights, but in practice that hasn’t really worked out. He thinks that’s an issue about access and thats an issue about being empowered, being supported, being assertive, and often having to complain. Carers can complain nicely in the toolkit, as in that toolkit they have a sort of touchy feely complaint process, but it is often having to put your foot down and to do that Prof Luke thinks you need support from the sort of support groups that we are involved in.

Research has showed that “Carer support groups” and particularly “emotional support” is just as much as the single most useful thing that families with caring responsibilities need. So the law says there’s a duty under Section 10 of the carers act to assess carers.

There’s a duty to meet the needs of this carers. If a carer sort of says that the way an assessment should go is that the carer would have an assessment and that would say, look, I need a break, I need to have time on my own, I need to have time to go back to work, I need time to go to college, I need time to have a leisure or all of those things. The law says carers have a right to do to work to do education, training leisure.

Of course, in practice, it’s very difficult to get that but the carer can say “look, I need to do that!” and then the local authority would say “well, you need a break, then you need some time to do that”. So they then assess the disabled person with the additional support that the disabled person will need so that the carer can have a break. Often that’s been called short breaks or respite care, but it’s basically providing a decent package to the disabled person, so the carer can resume an ordinary life. So a carers assessment might identify a need, which is for break, but the services tend to be given to the disabled person, because that’s the person that has to be supported. So the carer can have that break. So the duty to meet eligible needs would be off to the duty to provide care.

Prof Luke joked that even though he is from Leeds University, you don’t need to go all the way up to Leeds, you could actually go to one of your local universities and do a part time PhD on what is care. This is because care isn’t just physical and practical care. Clearly, it seems to be that some of the most exhausting care is actually emotional care, supporting people. The Care act accepts that that you may not need to be physically or practically caring but but the mere fact that you’re anxious and stress waiting for actively seeking to prevent the next crisis that’s caring, and that’s one of the most exhausting things you can do as a carer. So caring can be done at a distance as we’ve seen during the Coronavirus. A lot of people are caring and are anxious and supporting people in care homes. That’s the care that takes its toll that qualifies you for your carer’s assessment at the very least!!

The key thing about caring in this country is that there is no duty on carers to provide care because that was abolished on the fifth of July 1948. Luke mentioned that we are one of the few countries in the world where there is no legal duty on a family member to care for another family.

So the act, quite rightly says that whenever there’s any assessment whatsoever, and that’s a hospital discharge, or just an ordinary and social care assessment. So whoever’s doing the assessing mustn’t assume the carer is willing or able to provide a continued care they simply don’t have to do. Prof Luke thinks it’s still culturally very difficult for a family member to say I don’t want to care for my mother, my son, my brother, or whatever and he thinks that the better approach often is to say, Look, I’m just physically and emotionally not able to provide care unless you give me some a break or some support. So you know, maybe I’m willing, but I’m physically not able to do this emotionally.

The law says that whenever an assessor is assessing for care, then the assessor must consider the impact on well-being, which is what the carer wants to do with their daily life. And it specifically says that includes education, training, leisure and work. So carers shouldn’t have to go part time or give up work or make all those arrangements. They can just carry on because they don’t have to provide care. Or all too often care is provided because the response of the local authority is inadequate, and carers don’t want to leave the person for whom they care in a difficult situation.

When you get a care plan and normally that would be for a disabled person. What the Ombudsman is saying quite a lot at the moment is that care plan wouldn’t only say this support will come in on this day with people with these set of skills, doing these particular tasks and these arrangements being made, but it will also include a plan B, because inevitably, the best laid plans just don’t work. So there is a problem and then the local authorities say, well, that’s unforeseeable and of course, that’s not unforeseeable, it’s predictable. So in the end what’s going to happen when the unpaid carer that doesn’t turn up or when the care system doesn’t work out, or when the the carer center is closed?

The thing is as Prof Luke mentioned, the care plan has got to be carefully mapped. You can’t say, Look, I’m sorry, we’re short of money, we’re gonna have to cut the care package for this person, or would have to reduce the rate, the needs that have been identified must be met. And if that costs 3000 pounds a week, then it costs 3000 pounds a week, money is only relevant when there’s two ways of meeting a need. If the needs are met adequately, then the local authority can choose the less expensive and but just can’t set arbitrary limits.

Prof Luke then looked to explan human rights and carers, which are not a protected category under the Equalities Act. So the Equality Act protects people on grounds of race and sex and age and religion, sexual orientation, and so on. But it doesn’t protect “CARE” as people who provide care. The Equality Act adopts the sort of social model of disability and the idea that says that people are not handicapped by their impairment, if they can’t walk, for instance, their problem is not that they can’t walk. It’s the problem that they can’t access certain support services, because of the way that we have created society. A good example was shown to the forum in the classic image of that is on the front page of Michael Oliver’s, seminal book, where you have a disabled person struggling to get up the stairs in a wheelchair, and he can’t vote. But he can’t vote not because he’s a disabled person who can’t use his legs. He can’t vote, because some idiot but the poling station at the top of a flight of stairs. So its the society that is what is handicapping him.

He’s unable to do these things because of physical barriers, not because of anything to do with him. They don’t always have to be physical barriers, they can be attitudinal barriers that you can’t do this because you’re a disabled person. Or they can be sort of administrative boundaries that you have to fill out forms and things like that. If you have intellectual impairments, you can’t do those sort of things or even visual impairments. So the Equality Act protects disabled people from adverse discrimination.

It doesn’t protect carers, however the social model does work or carers. So if you had a carer who was lets say, taking somebody and the carer wanted to vote, well, they probably could leave the disabled person at the bottom of the stairs, run up, vote and come back, and that would be okay. But what happens if the carer had to go for a longer medical arrangement like a CT scan, or radiology or if they had to perhaps spend an afternoon in the library, then they would be handicapped by their caring responsibilities, because they would have to make quite a lot of arrangements in advance to ensure that the disabled person was cared for whilst they did that longer term activity, so in that way carers are suffering because of their caring responsibilities.

So you could get a situation like if you want to see your GP, and you’d have to make an appointment today. You’d have to make an appointment on the morning. Well, that’s an arrangement that is probably okay for most people, except it’s not okay for carers because they’ve got to actually do all the mechanistic mechanics of arranging for substitute care for the the person that they care for. So that would be a process that adversely discriminates against carers. Its more difficult if the ‘cared for’ is mentally struggling and the system refuses to support the person doing the caring because it is deemed the ‘cared for’ is not in immediate risk. It is almost like a balancing act where anything could go wrong.

Now over 10 years ago, the was a key case of the European Court of Justice call the common or average law, and they held that treating a carer adversely, because of their caring responsibilities because of disability. This was a case where a woman was sacked Sharon Coleman, because she had to take on unexpected leave, or she had to take time off work because of emergencies to do with her son, who was disabled. The European Court of Justice said that she was being treated adversely because of the disability wasn’t her disability, but because of a disability she was being treated adversely. So a GPs appointment system that said everybody has to make an appointment on the morning is treating a carer adversely, because they are like everybody else, they have caring responsibilities. So there’s a limited amount of scope for using discrimination legislation in the equality act, to a degree section 13 of the Equality Act. But it’s been very little used. Prof Luke has written about that in his new book and the reality Luke pointed out is you’re not seeing lots of carers running off to employment tribunals.

In the end Prof Luke has been arguing that discrimination doesn’t really help carers very much, but it’s there to it’s to be that they have limited protection. There should be a lot more discussion, but there is academic discussion on what should be clearer to human rights. Professor Luke pointed out that there is a lecture on this, which people can download, if you really haven’t got anything better to do with your time where he actually talked more about this. Prof Luke has also written about this extensively. He thinks it’s quite extraordinary that we have lots and lots of cases about the right to express yourself or the right to do this and the right to do that. but there’s no more important activity for humankind then “CARING”. If we didn’t have caring, then we would die within hours of being born. So caring is the most fundamental human rights. We all have to be cared for and it must therefore be that there must be a “protected right”, surely for caring. Protecting the right to care is more important than protecting the right to anything else.

And yet, there’s nothing in any human rights treaty to have the right to care. There’s the right to private life, the right to family life, the right to express yourself, the right to religion and Association.

However there’s no question that caring is a HUMAN RIGHT and it would fall within what we call article eight, the right to private and family life. There is hardly any cases on this again, in the paper. Prof Luke mentioned he has just written in his book where he talks about this.

Some from the UN mentioned that it’s hard to think of the human rights that is not potentially affected in some way by the unequal distribution and difficulty of unpaid work. The failure of the states to adequately provide funds, support and regular care contradicts their human rights obligations and really what she’s doing there and really, of course, is its the issue with caring is the caring is gendered, because women do most of the caring then caring is looked upon as low skilled, which in itself is a discrimination.

Covid-19 vaccine – Its safe and necessary

Welcome to my latest blog post by unpaid carer Matthew Mckenzie from South London. I thought to do a quick blog and do my bit regarding COVID-19 Vaccines and the importance of getting the vaccine when it is offered to you.

As you probably already know, just by looking at my photo. I am a black person. It was only in 2019 that health services were put under immense pressure due to the impact of the virus. Not just the health services, but social care, the economy….come to think about it practically everything. Up until now many unfortunately people have been taken from us because of this terrible virus. The old and young, black or white and rich or poor. No one is truely safe, especially those who high risk COVID infection jobs or those from poorer backgrounds. Those from BAME groups have a higher risk of catching the infection and are still suffering the worst outcomes. It does not help that the history of health and social care has been at odds with those from a BAME background.

Fast forward to now there has been many changes and developments. We in the UK are lucky to have access to COVID-19 Vaccines and it was not long before I was offered mine. As a carer and a black person, I was still in two minds about getting the jab.

I must admit I am in many whatsapp groups, plus facebook groups and so on. I often received emails warning about the vaccine and how black people were being tested for eradication, or how my hair would fall out (well I don’t have that much left anyway). Most people I came into contact with discussed the importance of having the Vaccine, while others did not want anything to do with it. Looking back on what we all have been through in 2020 certainly made up my mind. I have lost too many people to the virus and when I was offered the vaccine, I took it.

The day of vaccine jab, I felt a little nervous, I was not sure what to expect or if I would get an unfriendly service. I admit it was so easy to book the appointment online and the location of the vaccine centre was very easy to get to.

I was greeted by friendly staff at the GP surgery who asked appropriate questions before I was due for the vaccine. It was not a long wait and every one was friendly. I filled out a form on my health backgroud, which was also very fast and waited for my turn.

I did not see anyone being dragged into a room and given the shot, people could change their mind anytime and to be honest every one was calm and quite. As soon as I was in the nurses treatment area, the jab was so quick that I hardly noticed it. There still some worry about side effects, but its been 2 days now and apart from a sort arm I have had no side effects at all.

I felt that after all the worry, the COVID-19 vaccine is completely safe and we as black people need all the defense we can get from the virus. There is no conspiracy to wipe out the black race or put microchips in them. We won’t be made infertile, because there certainly is no serious data on clinical trials pointing to this.

It still is important to wear a mask, because no vaccine is 100% effective and so it is important to practice social distancing. I urge those from a BAME background to take the vaccine because we have suffered enough not just from the virus but the difficult roles that those from a BAME background have to do be it in the NHS or social care. I certainly urge carers also to take the vaccine because if you are caring for someone vulnerable and you catch the virus then you put the person you care for at greater risk.

We all must do our bit and protect ourselves, our community and our loved ones. The virus does not really care if your black or white, rich or poor. The virus’s job is to infect you and you have to roll that dice to hope it won’t kill you or spread to those you are trying to protect.

Do yourself a favour and take the jab.

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

Lewisham BAME MH Carer Forum January 2021

Welcome to the first January Lewisham BAME carer forum for 2021. The BAME carer forum is one of the 6 carer forums I run once a month. The carer forum runs online to adhere to covid-19 restrictions and allows members to attend a lot more easily.

The BAME Mental Health carer forum is aimed at BAME carers who are caring for someone with a mental illness, especially for someone using the services of South London & Maudsley, although I am not super strict who attends the forum since carers from other forums and boroughs often attend.

On the January agenda were the following.

  • NHS England presenting on their National Patient Carer Race Equality Framework (PCREF)
  • SLaM presenting on their Local drives for PCREF
  • SLaM older adults diversity drive

We were joined by Staff from Oxleas as well as Manchester NHS Trust who are also seeking to engage and improve services for the BAME community.

A representative from Public Health Lewisham also attended as well as carers, black mental health activists and researchers.

NHS England & Improvement presents PCREF

Husnara Malik the Programme Manager for National Mental Health Team presented on “Improving Black, Asian and minority ethnic community experiences of mental health services”.

She spoke about the Advancing Mental Health Equalities Strategy which outlines the short and longer-term actions NHS England and NHS Improvement, which will advance equalities in access, experience and outcomes in mental health services. The Strategy builds on the 8 urgent actions health systems must take to advance equalities in the round, referenced in the Phase 3 COVID-19 response letter.

The Key objectives of the Advancing Mental Health Equality Strategy are

  • Developing the Patient and Carers Race Equality Framework (PCREF).
  • Investing in advancing mental health equalities via transformation/pilot sites.
  • Sharing evidence where it emerges.
  • Developing a Provider Collaboratives impact framework.
  • Improving the quality and flow of data to national NHS datasets.
  • Using headline measures of mental health equality to monitor change over time, at both national and local level.
  • Supporting the development of a representative workforce at all levels, equipped with the skills and knowledge to advance mental health equalities.

The aim of the PCREF is to improve the way organisations deliver mental health services so the experience of Black, Asian, Minority Ethnic patients and carers improves; to the end of making services more accessible, and to improve the health outcomes for Black, Asian, Minority Ethnic patient and carers.

But What is it?

The PCREF is an organisational competency framework that values the voices of racialised communities’ lived experience to help service improvement by providing more culturally appropriate care. It is a practical tool which helps organisations to understand what steps it can take to achieve practical improvements.

Components of the PCREF

  • Part 1: Statutory and Regulatory Obligations

An outline of the core statutory and regulatory obligations the PCREF will support Trusts to fulfil, including (but not limited to):
Human Rights Act 1998
Equality Act 2010
Workforce Race Equality Standard (WRES)
Use of Force Act 2018 (The Mental Health Units)
CQC Inspection Criteria well led

  • Part 2: Organisational Competencies

Core ‘competencies’ culturally-responsive services should demonstrate (see next slide)
Guidance on how to identify and additional, local competencies
Advice and support on how to build these competencies

  • Part 3: Assessment and Feedback Tool

A Patient and Carer Feedback Mechanism, to be supported by a benchmarking tool, which tracks progress over time

So far the Steering group formed, consisting of experts by experience and 4 PCREF Pilot Trust partners – Birmingham and Solihull, Greater Manchester, East London and South London and Maudsley Trust.

They Held deep-dives into differential BAME experiences within mental health service pathways

Building on the above, and the Mental Health Act review, identified 10 potential organisational competencies

Started engaging with patients and carers on these potential competencies, with further engagement in the pipeline

How can people with lived experiences including volunteers get more involved with mental health services to help improve the outcomes and experiences for BAME communities?

NHSE&I currently have a number of people with lived experience as patients/carers co-developing the PCREF. NHSE&I also believe it will be critical for the PCREF to be developed in partnership with local communities, with lived experience informing its development and ongoing evaluation. They expect ‘co-production’ will be one of the core competencies of the PCREF itself. This means we would expect Trusts to have clear and transparent ways of working with diverse communities to inform service improvements, and how they are evaluated

NHSE&I aim to achieve this by holding more engagement with specific groups i.e. older people, people with a disability and other groups in the development process (accounting for intersectionality). In addition, they will be rolling out a more targeted questionnaire on the competencies in the PCREF Pilot sites early in 2021. Our Pilot sites will be focusing on more ‘in-reach’ models of engagement like targeted workshops and focus-groups as part of this

Zoe Reed SLaM Non-Executive from the board presents

Zoe explained the key principles for developing reponse to the fact that we know that many black service users and carers don’t get equal access to mental health services. So the principles SLaM are using are the joint leadership SLaM and the BAME community between each program on PCREF that they were building towards their database

Zoe mentioned their will be joint chairs at every level between the community and SLaM on the new PCREF initative. So this is the program that SLaM are working towards at the beginning of phase one for this year. SLaM are now is really looking at the data and trying to get an understanding about what the data is, and how that might lead them to think where are the gaps for black people using their mental health services?

Carer questions

Some members were interested in attending the community PCREF events hosted by SLaM and the BAME community, so there were a few questions regarding this. Other question on if SLaM were going to involve the carer centres where BAME carers also use their services.

SLaM Older Adult services Presents

This was a shorter presentation on how Older Adult services were also looking to engage with the BAME community on memory services. There has been a lot of engagement with the organisation Black Thrive in Lambeth and Southwark, but there needs to be a way to engage in Lewisham.

This concludes the January BAME carer forum for 2021

The Fircroft Trust urgent appeal

The Fircroft Trust are devastated to have been informed by RBK, without consultation or notice, to vacate our beloved Mental Health Resource Centre on Ditton Road.

The Fircroft Trust has leased this building for over 40 years and provide a haven for over 75 people who have varying degrees of mental health challenges. At a time when there is a national crisis in mental health, withdrawing this essential support system, which has not only been shown to improve quality of life for the individuals who accessed it, but also reduce hospital admissions and suicide rates, has been devastating for our local community.

The Fircroft Trust has worked hard to minimise the impact of the pandemic on the people who rely on their service and have continued to support the community by maintaining daily contact with their most vulnerable service-users, either via telephone, outside group activities or ‘COVID-friendly’ garden work and meet-ups. However, the impact of the pandemic has meant The Fircroft Trust faced increasing demands for their service from vulnerable members of our community. This is something The Fircroft Trust can’t ignore and they urgently need your help.

How you can help

Services needed by our community:

The Fircroft Trust are urgently seeking new premises in the Chessington, Surbiton or Tolworth area that would be suitable for us to resume the face-to-face support services that is so missed by our service users.

If you can help, or know of a local building, please contact Kay Harris on the details below.  Please share this with your network and help us to continue supporting the people in our community who need us most.

The Fircroft Trust

Tel:         07885 771571

Email:     office@thefircrofttrust.org

http://www.thefircrofttrust.org

Lewisham Mental Health Carers forum January 2021

Welcome to the first update of the first carer forum for January. These carer forums are aimed at those caring for someone with mental illness. The forums provided engagement from mental health services to educate and involve carers regarding services provided.

Carers can also network together and slowly build up empowerment. For the month of January we had Lewisham health commissioner Natalie Sutherland talk about the following.

  • Her role at the Clinical Commissioning Group
  • Why the CCGs merged
  • Their focus on mental health
  • Pressures on the health system due to corona virus
  • Initiatives for families and carers.

Also in attendance were carer members from Lewisham and some from other areas interested in mental health services. We also had a few researchers from universities wanted to speak to carers about their research.

We also had Lisa Fannon who is Lewisham’s public health offical regarding projects their working on. She is there to support the group in as much capacity as possible. Lisa is currently working on a health inequalities review, which focuses specifically on black African Black Caribbean communities and she is involved in getting a lot of research and experience, which is fed through with hopefully some clear actions and recommendations at the end of the review, which spans over 18 months, which could lead to some positive change.

Lisa is aware that often reviews and consultations and surveys and discussions that things do not often change and mental health is a part of that. Lisa also updated the group that as part of the black and minority ethnic health inequalities working group there has a clear outline in terms of actions around mental health for community members.

Lisa repeated that in terms of supporting anything that we may need that help and support, she will be there for us. Lisa also updated on the vaccinations webinar that’s being run by public health and that the panel is unusually predominantly black health care professionals and GPS, which is important due to the high risk of covid deaths on the BAME community.

Others in attendace with South London & Maudsley Public and Patient involvement for Lewisham and Croydon and also an Independant Mental Health Advocate who learns a lot from what carers raise at the forum.

Natalie Sutherland Presents

Natalie opened up her presentation stating that its good to see least how the forum is engaging on whats taking place in the council and around sort of carers initiatives, especially around sort of the inequalities work as well for the BAME communities.

Natalie mentioned that she is the provider Alliance development manager and she works in the NHS southeast London clinical commissioning group, Lewisham Directorate, which probably doesn’t mean a lot to anybody at all, but she just thought that she would update that previously, the employer would have been Lewisham clinical commissioning group. However from April last year, the CCGs merged to become one southeast London, which covers the six boroughs being, Lamberth, Lewisham, Greenwich, Southwark, Bromley and Bexley, so it covers both slam and Oxleas mental health trusts.

The reason that boroughs resorted to merging is to support system wide working to become more streamlined with one single CCG and having direct commissioning across the entire system. So this was put in place to help try and make a consistent approach for all services that take place across the different boroughs. Natalie felt it was quite lucky in terms of SLAM boroughs, which is Lambeth, Southwark, Lewisham and Croydon, but it also did help them to align the consistency with Bexley, Bromley and Greenwich, who also has Oxleas as their sort of mental health provider. So in terms of what that actually means in practice in terms of mental health, there is a mental health central commissioning team, which are based at Tooley Street “Southwark”, although many staff are working from home due to the COVID-19 virus.

The team manage the contracts to ensure the consistency around delivering the mental health investment standard, the long term plan initiatives and just making sure that things are sort of consistency and there’s a core offer between those six boroughs. That means that they manage generally the contracts for South London and Maudsley on behalf of the slam Boroughs, excluding Croydon because they’re part of Southwest London clinical commissioning group, which looks more at the acute services and the management around that.

In terms of the local teams, so the Lewisham Directorate, the CCG has worked more around the community based services so your community mental health teams, your voluntary sector and your social care. So her role specifically is that she sits within the transformation team that supports the system across Lewisham and sort of transforming services specifically around mental health.

She also has the hat on in that she supports, hospital discharge to assess for what they call the care at home Alliance, There are a lot of crossovers in terms of mental health, older adults, as well as adult mental health, that she looks to try and build the connections between to bring those links in towards the commissioning team.

In terms of the Mental Health Alliance, she hopes that most people have heard about the Mental Health Alliance. And if they haven’t, it’s just around organizations working together in partnership to improve the access experience in the outcomes of care and support in the borough around mental health. From October last year, the Mental Health Alliance expanded to not just include adult mental health, it now includes Child and Adolescent Mental healths services, and mental health in older adults. So in terms of the CAMS element, the main crossover is through what they would call tier four.

in terms of the work that’s going on around the community transformation piece, there is around sort of changes around sort of building and changing the way that IAPT is running and in psychological support that is provided in primary care mental health service in trying to sort of bring in to bring in a single point of access to be able to look at sort of a triage of referrals, to also look at the wider determinants of mental health, and also sort of building in the voluntary sector, whether it’s peer support, whether it’s employment support, whether it’s social prescribing, and what may be needed. Now, this is a core offer that, as Natalie mentioned before, they joined a southeast London CCG, that they will also have those core offer elements that is available into those boroughs.

Still its important to mention what is happening localy, that is on place to sort of take place locally and they do have the voluntary sector. So Bromley Greenwich and Lewisham mind, have employed mental health providers and peer supporters. In terms of the carers sort of import into that, Natalie feels like COVID pandemic has sort of put a lot of things of what they would have like to have done on hold as a result and a lot of that does include the engagement and the development of the services just as they sort of focus on the crisis.

So what they would like to do is to develop a dashboard and also to understand everything that takes place across mental health, which would also include the impact of carers within that and sort of the carers mental health as well as sort of the people that they support. They also want to establish, or develop and build on sort of the community links for the service user and carer advisory group, and established some communications and engagement network that we can test these pilots and sort of the feedback and the evaluation and have that iterative process as we go through on the transformation piece.

CARER QUESTIONS

One carer was trying to understand the idea of the CCGs boroughs mergeing, Natalie fed back about the integrated care systems, because she worked on a project with the healthy London partnership on for mental health transformation board. She helped to draw up the diagrams for integrated care systems.

Another carer asked a challenging question on how are the integrated care systems actually going to be implemented? When you’ve got funding in different places, and certain parts get cut once the pots where we were told they’re being increased, but they’re just not gonna be back to what they were 10 years ago?

Natalie responded that we have only emerged within the last year and are still sort of building up. Details are still being worked through. So while we are a southeast London CCG there is also the integrated care system and now healthier southeast London that operates and they have their own Chief Operating Officer.

Natalie will aim to get back to us on that, but in terms of the way they function, Natalie agreed. Even though they have integrated commissioning teams, we’ve been quite lucky in Lewisham that we have been operating. So the commissioners work across the CCG and the council at the same time for us in terms of the way that we deliver things. Natalie continued to feed back that the way that they also operate in Lewisham is through what they call the “Lewisham health and care partnership”. So as part of that is Lewisham Council, southeast London CCG essentially but also, the Lewisham, specific, Lewisham and Greenwich NHS trust, South London & Maudsley and also the primary care network. So that being “One health Lewisham” e.g. the GP Federation’s and they are the ones that will overseen the strategic vision for developing and sort of implementing those plans across Lewisham.

A carer quickly responded on the question of “Do you have any public participation in this implementation plan?”

Natalie responded that in terms of implementation, they did do engagements on groups for mental health specifically. They have sort of attended the service user and carer advisory forums (chaired by SLaM public & Patient Jane Lyons), or there’s been some forums through “Bromley Greenwich & Lewisham MIND”. There’s also is a patient reference group to which there are local residents, on board to help deliver those plans.

There is also for older adults the dementia Action Alliance, and a project or a work plan within that for sorting out CCG governance. This involves accountability roots, as well as developing outcomes and dashboards and key performance indicators on how the CCG would demonstrate that things move forward.

Natalie warned the difficulty in maintaining links was the result of COVID, a lot of the people have had to sort of stop the work to focus on COVID. The impact that that has had, whether it’s been through staff members being down because they’ve had to self isolate, or whether, changing services to make sure people have been kept safe. So move things from face to face to where they can go online in the first place.

Even people within the CCG, herself included could be redeployed at any time to sort of deliver the vaccine program that’s taking place across southeast London.

Another carer pressed a lengthy discussion on how funds would provide a quality health service.

The carer pointed out that when we compare the numbers of funding in Lewisham against Southwark and Lambeth, we have more people in the population with mental health issues. She felt her understanding is the distribution of resources as done on a headcount solution. Therefore Lewisham is already at a disadvantage in that area. The other area where Lewisham is at a financial disadvantage is surrounding boroughs to Lewisham, which is Lambeth, Bromley, and Southwark and Greenwich, missing the others, they tend to have better revenue streams coming into them for the local authorities in terms of their business rates, because they’ve got more business units. So their finances are better. So they can deliver more from the the local authority perspective. So that’s another lose area for Lewisham.

The carer then continued to point out that also each experiment regarding certain groups with specific health needs like, maybe older population, a younger population. If those two factors are considered, we’re in a lose lose situation, once again. So where do we go to when you go to do your outcomes, you’re going to get a higher failure rate. The other areas where Lewisham struggles as a borough is that doesn’t have a major hospital like guys, or St. Thomas’s or King’s College, which allow SLaM or other major institutions to give funds, when they want to do research, pilots and etc. It seems those boroughs get the top pick and Lewisham is like back at the bottom. This is because the funding is lacking there and everything it’s going to go back then to the proper carer? The carer continued stating that she does not know how much more she can shoulder. It’s like, Where’s the support for us carers? Where it’s not relying on the voluntary sector? Because we’re all worn out in Lewisham.

Natalie mentioned that she did agree with the challenges and we there needs to be a balance. Natalie thinks it is only a matter of time before the NHS is going through some sort of reorganization.

The last question came from a carer member who attended a southeast London CCG meeting yesterday about vaccinations. He was just curious on when does carers, unpaid carers fit into the vaccinations, because the reason why he asked was that he knows a lot of carers who are under the age group who are looking after their parents with dementia, who are suffering in silence because they haven’t been vaccinated yet. They are really worried now about passing on any any infections to the person they’re caring for.

Another question was on the BAME community, the carer felt that those from the BAME community were meant to be more vulnerable than others, but nothing had been said about when are they going to get vaccinated? Or what kind of vaccination they are going to get.

Lisa the Lewisham Public Health representative stepped in and mentioned the question on BAME vaccination was important. Lisa wanted to signpost members to some information In that, Lewisham public health are aware that due to information communication that the community receives by social media, WhatsApp groups, email information, and other communications is for Lewisham take up on vaccination is low,

Lisa continued that within their team, they are working really hard to give specific information about the vaccine to all of our residents. They are going to be working on targeted communication to Lewisham’s black Asian minority ethnic communities. They are going to give factual information to support young people making their own informed decisions regarding vaccinations.

A carer member responded about a particular meeting they went to yesterday, and it was interesting about what Lewisham health services are doing. But they still feel that the unpaid carer was just being ignored. Unless that when you become a patient, then they will get some support. It seems services are not interested if you’re a carer and you’re looking after someone with dementia who’s already vulnerable, then you are suffering in silence as much as the person who’s got the mental health issue or you because you’re not sure where you stand.

Due to a vaccination webinar Lisa felt that it’s really helpful to hear all of this feedback and if she can offer in some help ahead of the webinar, she will pass this information on to panel members at the event. It will be an hour session, but she will make sure that because in the event they will have some pre questions that came from last time, she will make sure that its included with a response to the carer members queries.

RESEARCH PRESENTATION

At the January carers forum, we had a number of researchers who joined to give some information. One researcher Emilie Wildman talked about a study that she is doing for part of her PhD. She is a PhD student at King’s College London and the focus of her research is all about carers. The study is very relevant to mental health care specifically. So a bit of background to the study in many health conditions, including mental health, she knows that people living with the conditions will often be supported by a close family member, relative or friend. These people are referred to as informal carers and we also know that in some relationships, that can be difficult periods that might include episodes of disagreement upset, and in some, in some cases, behavior from one person to another. The study is looking to speak with carers who have experienced any type of aggressive behavior from the person they care for.

There were some interesting questions from members of the forum although I was overjoyed to see more research directed towards the carer experience. I am hoping more research can link into changing policies and services.