SW London MH Carer Forum March 2021

Welcome to the South West London Carers forum. One of the new carer forums I co-chair along with another member who is on the involvement of South West London & St George NHS Mental Health Trust or SWLSTG for short. The carer forum is a hybrid of the other carer groups I run. What I mean by that is somethings us unpaid carers meet together and chat about how things have been going for us. Then other times we have selected speakers inform, educate and engage with us about mental health services and involvement in health and social care. The SW London carers forum started last year (2020) mainly as networking and peer support.

For the March SW London carers forum. We are continuing to seek more engagement, especially when it comes to carer strategies. The carer forum is easily one of the furthest reaching group, since SWLSTG covers mental health services in 5 boroughs that being Merton, Kingston, Richmond, Sutton and Wandsworth. A good thing about those boroughs is I have good relations with all the carer centers and one of them is contributing to my new book.

The March 2021 SW London carers forum had 2 speakers. This is due to engagement from the leads of Richmond’s carers strategies.

For this month we we joined by Heather Begg who leads on Merton’s Carer Strategy.
Plus due to the excitment of the mental health act consultation. SWLSTG was kind enough to send Tom Lelmezh who is the Mental Health Law Manager.

Heather Begg commissoner for Merton’s carers strategy presents

Heather thanked us for inviting her and she reminded us that she is a commissioner in Adult Social Care in Merton. She has worked in Merton for a long time in a number of different roles and has a lot to do with project management and program management. Heather has only just moved into a commissioning role last year, but she oversees their grants program. As she was mentioning earlier, the grants program in Merton is how they invest in preventative services to really prevent, reduce and delay the need for health and social care services for as long as they can support people to stay as independent as they can possible.

So their aim is focused on well-being services. Last year, when the pandemic hit, she worked in partnership with their local voluntary organisations to set up a community response hub. So alongside her role, she has been very involved in that for over a year.

Merton Council as a London borough hasn’t had a carrier strategy for a long time. So they have just gone live with their strategy this year, and it’s a five year strategy. They have been working in partnership with all of these organizations, but most importantly, with carer representatives, right from the start.

So the strategy highlights the support that’s already available to carers across the bar, and carers who use some of those services tell Merton what a difference they make to their lives. However, Merton knows they need to do more. It requires all partners to work together to make carers lives better. When Merton decided they needed a carer strategy. This was in relation to an action plan, that department of health and social care bought out for 2018 to 2020, Merton used the self assessment tool against this action plan to assess how are they supporting carers.

What was clear was that Merton did have pockets of good practice, but not everybody knew about them, certainly not Carers. So Merton needed a framework to put it all together. Therefore It was agreed that Merton would have a strategy, But what Merton would do is they would talk to carers to shape that strategy. So Heather could have come up with her own ideas about what she thought carers needed, But that wouldn’t have made necessarily any sense to carers. So Merton didn’t want to make assumptions. The London borough of Merton spoke with over 200 carers, and approximately 50 professionals to help shape the strategies, themes and priorities.

So a Task group was set up in 2019, to start work, and they were ready to sign off literally a week before we went into lockdown. Unfortunately, the draft strategy got got delayed. But then after the first lockdown, Merton would have been talking to carers throughout that time, and realized that it couldn’t be delayed any further. There was national research on this as well. Merton has just strengthened their rationale for saying, “we know it’s difficult, we know we’re all really busy. But actually we have to prioritize it’s for carers, we have to get moving on this.”

What Merton have to do is recognize the impact of the year, they couldn’t ignore that within the strategy. So Merton did a refresh and refocused a one year implementation plan, what they thought they would do. So instead of saying this is what Merton would do over the five years, which is in the strategy, Merton would have a plan for year one, and this focus on what they think are the most important things to do in year one.


So Merton identified 11 priorities, and the health and wellbeing board in Merton approved the strategy in November. There was already a young carer strategy in Merton. That was published in 2019, But it was never really implemented fully. So actually what Merton decided to do was to actually align the Young carers strategy, because actually, a lot of the things that Merton was talking about will be relevant to young carers too, with the two carers strategies working together. Heather mentioned that I was talking about the strategy for the mental health trust earlier, and obviously, whilst Merton has got this carers strategy, it will align with other strategies, other policies and other standard operating procedures, as well. Merton want to make sure that they align and link it together really well. So by having those conversations with their partners, they can’t duplicate but at the same time, they can’t make assumptions, because assumptions will mean that there will be gaps in support.

I pointed out to Heather querying who sits on the Health & Wellbeing board off her presentation. Heather responded saying that she is far too junior to be on the health and wellbeing board, but it will be at director level. So it will be directors of the CCG Southwest London, Merton CCG and the mental health trust, community and housing within the London Borough of Merton and other partners as well.

Heather mentioned that every London Borough should have have a health & Wellbeing board. So Merton met together as an implementation board in January 2021. with representatives from the trust from the CCG from the council. But wider than that DWP and carers support Merton and other local organizations like the alzheimer’s society Merton, Merton Mencap, etc. But most importantly, carer representatives as well.

Merton have already set up for subgroups that are aligned to those key themes as well. So all of them have had an inaugural meeting. They’ve had their first meeting. And so Merton are now working through defining what those actions are.


Heather continuted to present by mentioning that its not enough to Identify carers but actually talking to carers, this has been a real struggle actually for some of the universal services for GP practices to identify carers. At the moment because informal carers have been identified in Priority six with the vaccine rollout, this was flagged as a big issue that it is about identifying carers.

What Merton at hoping to do to is strenghen identification. It just showed that there was no standardized approach. It’s really put the spotlight on the profile on that, and a lot of the work that Merton are going to be doing initially, within their carer strategy, they will be working with those GP practices, those practice managers, those GP and clinical leads and the CCG to make sure that the information in every single GP practice in Merton is robust and succinct and is used.

Just because somebody is identified as a carer, so what’s the next step? So a carer might be registering today with their GP practice, because they want to be prioritized for the vaccine. But then what next? Is it just to have a carers flag? What does that mean?

Merton are going to do quite a bit of work on that. carers assessments and more. When Merton spoke with carers, some of them said, ” it opened the doorway for so much support. Once I had a carers assessment, it was brilliant. ” However What’s the point? Do Merton need to change the message to make sure that people know what their rights and entitlements are. Regarding assessment. Even if it is horrible word, assessment. I mean, really, it’s just a decent conversation about what support somebody needs, and where to go for, or to be able to share with somebody.

Questions from members

One carer said that they really liked the presentation and great that Merton seems to be doing such a lot. Some of the points that you mentioned, are things that we’ve been pushing for in Lewisham. I wondered whether you considered something around planning for the future. I know there’s the emergency planning. planning for the future is slightly different in the emergency planning and more?

Another carer was very concerned about st george’s acute hospital university foundation trust and that they had evidence loved ones have suffered and died on unjustifiably within merton due to doctors fully aware of their diagnosis of dementia or learning disabilities but still denying the carers access to their loved ones and it’s caused many patients to suffer and die.

Another carer queried into the restructuring of the SW London CCGs. They were wondering about does it work with the multiple CCG and Kingston or the Richmond one? Do they have the same initiative as you have or how does it work?

As for me, I also asked questions as the chair of the SW London MH carers forum. I wanted to know if there was a lead in regards to GP practices. Like in Lewisham, we had a Doctor engage with that BAME forum, the GP leads in regards to all the GP practices and engaging with the members because we’re sort of carer lead. But how, to work with GP practices, you know, not just Merton, but other boroughs on how they can engage families and carers and identify them.

South West London & St George Tom Lelmezh Present on MH Act

Tom Lelmezh who leads on SWLSTG MH Law department kindly engaged carers at our SW London carers forum. Tom started off by mentioning that he would like to say a few words about the reform of the Mental Health Act that currently is is going on.

The government has published the paper or the white paper on reforming the Mental Health Act back in in January, and that paper sets out proposed changes to the Mental Health Act 1983. As we know the very famous mental health act is about how people get sectioned under the Mental Health Act. Tom felt sure we as carers know that all too well. So the paper sets out proposals and ongoing work to reform policy and practice to support the implementation of the new Mental Health Act. It stems from the recommendations made by the independent review. Also, commissioned by the government, it is a big paper, which people can find online, in fact many can just search for it on Google. It should be called “Mental Health Act reform”.

The government is seeking views from everyone, from carers, from clinicians from patients, it is open to everyone who would like to contribute. And the consultation focuses revolves around 35 questions or 35 proposals that the government would like people’s views on. Anyone can submit their views. electronically or just Google it and submit your response. Tom gave members an extra option to send your views to people like himself, and he will ensure to include our views into SWLSTG NHS trusts response.

As a trust SWLSTG are preparing their own response to all 35 questions, and the responses are due by the 21st of April. So they are very busy now putting it all together. It’s basically a big paper and the trust are preparing statistics. SWLSTG are also contacting various groups, including an engagement group like ours, just to see their views on some of the more controversial points.

So the key points in the reform of the Act is that it proposes a wide range of changes to improve mental health services, and people’s experiences under the Act. So the changes, aim to make sure that people are detained for shorter periods of time, and only detained when absolutely necessary. There has been a lot of research that indicated an increasing use of the Mental Health Act, that means more and more people every year, are getting sectioned, deprived of their liberty. And sometimes the same person may get sectioned more frequently. This has to change.

Tom mentioned that there has been a lot of research around the new MH act changes, in fact, the terminal terminology of BAME maybe slightly confusing in this regard, because various ethnic groups within the black and ethnic minority group will behave differently in terms of detentions under the medical Mental Health Act. So for example, Asian groups tend to be underrepresented within the detain population, whereas black groups will tend to be over represented. So for that reason, The category BAME, is probably not very helpful because it doesn’t add that there are varieties within that wider market group. Tom felt that probably this was one of the key drivers for the a desire to reform mental health Act is to decrease the number of retention but also to address the problem of over representation which is particularly acute amongst black males in general in the civil sections and particularly in forensic section groups and in prisons there is no representation among black males quite significant depending on the section.

So the act proposes to make people who are responsible for the mental health act assessments to prove that there is an immediate risk of that person committing suicide or of that person harming another person so the risk criteria will be strengthened compared to what we have now and it is hoped that it will result in fewer detentions under the mental health act.

Tom felt the detention criteria is potentially controversial and potentially risky especially given that that community services are sometimes underfunded and it is only when a person in the community develops that mental disorder becomes really acute that they need attention on the medical health act. Sometimes it happens because there just isn’t enough resources within community mental health teams to look after those people whilst in the community to provide enhanced care and support and because of the lack of this support and lack of this resource these people are allowed to deteriorate to a point when there is no other choice but to admit them medical health.

The Nearest Relative query

So this is a very complex and controversial area and perhaps Tom wanted to say a few words about the proposals where we as carers might come in on the concern of “to get rid of the role of the nearest relative”, any of us who have had relatives detained under the mental health act probably know what nearest relative means and many of us are already nearest relatives under the mental health act both the proposal is to get rid of that role and replace it with a nominated person’s role and that’s because the nearest relative cannot be chosen by the patient and could make objections to somebody acting as their nearest relative under the mental health Act but there is no choice for the patient to pick and choose the best person they think should be their nearest relative

The nearest relative currently is determined through the hierarchy of relationships especially blood relationships; infact there is a whole section in the act that describes which of your family members will be given the powers from the nurse as the nearest relative. As the nearest relative you have the power to discharge the patient from section. Under the proposals the nominated person will be nominated by the patient themselves, so some of you will be in that category in which your relative may nominate you or a suitable person to act as the nominated person.

You as carers will also have the right to be consulted on statutory care and the right to be consulted to ensure you have information that these plans have information about the patient’s wishes and preferences and you will be consulted rather than just notified. This is especially the case when it comes to transfers between hospitals and renewals and extensions of the patient’s detention or CTO (community treatment orders) and you will be able to appeal the clinical treatment decisions at the tribunal if the patient lacks the relevant capacity to do so themselves.

The appeal criteria is met if you have the power to object to the use of the community treatment or the if it is in the best interest of the patient. So these are much wider powers than what we have now, under the current system of the nominee of the nearest relative. The nominated person will be involved to a much greater degree in a variety of decision making processes.


The SW London carers forum was reaching 2 hrs due to the interest of the speakers presentations. We had many excellent questions from members.

One member reported that MH detention is too long, very complicated. Plus the MH Act has with a lot of words that need to be explained in terms of Mental health to feel its making anything in simplified language, and more easily understood by carers and by service users, especially those who have learning difficulties. They felt the nominated catergory was a good idea since carers can take advantage of patients and patients are in a vulnerable state.

Other members were respecful and stated their views without disregarding others feedback. Another carer felt that they have a concern about putting carers in the firing line as it were. You could end up with carers having a lot of pressure put on them by their loved ones. Since a patient felt that they don’t need to take this treatment or don’t need to take this medication, don’t need to say who is actually a carer of any kind connected to the patient.

Carers should be included as the advocate, and can use their unique insight into the, their loved ones, personality, illness and to negogiating techniques of not so much to persuade, but to help them to understand the illness, help them to make better informed choices. if you’ve got this situation where carers become nominated persons, who have the have the power to say, yea or nay to the treatment, you could actually end up infringing on what could be like a human rights issue.

Another carer member stated that they know of somebody who is 91 and their loved one is having problems with alcohol and to go through the detox program. Recently they had to nominate somebody and now they tried to nominate that person that is not appropriate. The carer’s main question would be how the government put forward the idea that people would possibly spend less time in hospital or be prepared to kind of put their money into the community aside of other things so that people do not get to that stage of being so unwell that they have to be in hospital.

Lewisham BAME MH Carer Forum February 2021

Welcome to the February update of my Lewisham BAME carers forum. Out of all the carer forums and peer support groups I run, this one focuses on BAME carer experiences and challenges. The forum although focuses on Lewisham, BAME carers from outside the borough are welcome since there is a lack of BAME carer networking groups, especially BAME carer-led forums. I might even consider changing the name to Bromley, Lewisham and Greenwich BAME carer forum since I am very active in Greenwich and the actually BAME carer forum is fairly linked to Bromley, Lewisham & Greenwich Mind via the Community Wellbeing Hub.

For February our speakers were.

Dr Shubulade Smith CBE Psychiatrist from South London & Maudsley.

Dr Shubulade Smith CBE is a British academic and consultant psychiatrist at the South London and Maudsley NHS Foundation Trust. She is a senior lecturer at King’s College, London and Clinical Director at the NCCMH and forensic services at SLaM. Dr Shubulade is a heavy supporter of BAME causes especially due to her field and experiences, so it was an honour to have her engaged with BAME carers.

Danielle Perlman is a senior Project Manager at SLaM NHS trust and is passionate about engaging with the community with the South London listens project. More on that later.

We had other attendees some from other NHS trusts including Oxleas, West London and some from Manchester NHS trust interested in BAME engagement initiatives along with our regular BAME carer members. One of the members from Public Health Lewisham wanted to raise that part of her portfolio of work focuses on black, Asian minority ethnic and health inequalities. Which covers a range of issues, including mental health, and the kind of work that Lewisham Public Health are doing around COVID-19 specifically within their communities. This also being obesity and cancer as well. The Public Health Lewisham representative was interested to come to this group on a regular basis, and is available if anyone ever needs to contact her about anything that they’ve got regarding questions or queries about within the local public health.

Other reps were from disability advice Lambeth, those who attend the PCREF BAME network group and so on.

Dr Shubulade Smith Presents Importance of improving outcomes for the BAME community.

Dr Shubulade Smith felt she was asked if she present about the situation of the mental health of black people, How she feels it is a major concern for many of us. So she was going to give us a quick overview. But she was just going to talk about black mental health, what the issues are, and a bit about the impacts of social factors and racism. Where we then get time for questions. She hoped most of the attendees knew that there is a real problem, because there’s a profound inequality and that inequality exists for people from black, Asian and minority ethnic communities. This is especially for all people who, when it comes to mental health, are from ethnic minority groups.

Obviously, there are issues for people who have also have protective characteristics, as she pointed out, but there’s a particular problem for people from minority groups. And that is particularly that they’re over represented in crisis and secure services. And that’s especially safe for black people, but also underrepresented in treatment. So if you’re from a white British background, you’re twice as likely to receive treatment for mental health problems. And if you’re from a ethnic minority background, particularly if you’re from a Caribbean background, or if you’re from South Asian, South Asian background. One of the things to notice, of course, is that in fact, it doesn’t matter who you are actually, accessing mental health care is pretty difficult where Dr Shubulade showed us some stats.

Dr Shubulade concluded that one of the big issues the challenges for BAME community to be referred for, you know, psychological therapy or psychiatric care. Likewise, if you’re that Caribbean heritage, you’re much less likely to be offered improving access to psychological treatments as much as it should be. Dr Shubulade wanted to make these factors known because people to at least give an idea why outcomes are so poor for BAME community wellbeing and members understand what the issues are. The fact is that there are we know that there are many different factors that increase those froma BAME background developing a mental health problem.

Genetics and family history are important, including perinatal factors, that means all the things that happen around the time that we are born. So if your mother is exposed to certain toxins and viruses, the fetus might not develop in order to develop properly or there might be something that happens that impairs what’s called neural development. That’s the development of brain malnutrition, for example being malnourished doesn’t mean necessarily starving. It can be being deficient in certain vitamins for example, and obstetric complications. These are the if you like biological factors that increase your risk of developing a mental health problem. I put those in blue, because they’re fixed, there’s not much you can do about those.

Dr Shubulade pointed out that most mental disorders that we see, however, are related to other factors that are not things that necessarily have to happen. So trauma and physiological, physical, psychological, it could be a psychological trauma, could be a result of emotional trauma, physical trauma and sexual abuse, and adverse childhood experiences. Plus it could be things like having a bad accident or parents splitting up. These are adverse childhood experiences, early and or persistent substance use. Dr Shubulade mentioned that if you start smoking cannabis, from the time you’re in your mid teens, then the risk of developing a psychotic disorder by the time you’re 25 which is five to six times higher than usual negative life events as an adult.


So when it comes to bereavement, job loss, moving house, homelessness, financial difficulties, all of these associated mental health problems, social isolation we’ve seen, particularly in the in the signs of COVID and how it impacts on people’s minds. Dr Shubulade just wanted to make sure that people had a better understanding of what goes on. People have massive fears about psychosis. When they hear the term psychosis, it’s often misunderstood. It essentially being detached from reality and it’s characterized by a person having delusional beliefs and or hallucinations. Dr Shubulade mentioned it doesn’t mean being violent or anything like that. delusions, inhibitions. hallucinations have very specific definitions. Essentially, a delusion is a false belief, it’s held with really strong conviction, despite the fact is evidence to the contrary. it’s out of keeping with the person’s cultural, personal, religious, familial background. Dr Shubulade continued with stating that a hallucination is when you have a perception in the absence of a stimulus, so you hear a voice, but there’s no one speaking.

There are different types of psychosis, you could get organic psychosis. So you’ve got a tumor sitting in your brain, and that affects a certain part of the brain, the limbic system, and that happens if you are taking drugs, and can lead to psychosis. Drugs can frequently cause many psychotic episodes and sometimes you can get a drug related psychosis or you get a persistent psychosis as a result of persistent.

You can have a schizophrenia type psychosis, that is psychosis characterized by particular types of conditions and particular types of divisions, you get manic psychosis when there’s a big mood component. So people are very high and elated and very grandiose can get depressive psychosis, where people are very, very sad and nihilistic and thinking that things are terrible, and everything’s going to just be horrible and die and they can become catatonic. You can get catatonia in schizophrenia and mania and depression as well.

The reason Dr Shubulade was just telling us this is because she thinks there’s often an assumption that psychosis is schizophrenia. It’s not just to say that the biggest risk for developing schizophrenia is a genetic one. In fact that if you have an identical twin, then you have an almost one in two chance risk of developing schizophrenia. Just in terms of prevalence, that means how frequently it occurs across the world.


Dr Shubulade mentioned we know that wherever you are in the world, where in white majority countries basically the prevalence of schizophrenia, psychosis certainly is 1%. Interestingly, that’s one in 100 people. And that doesn’t matter where you are. Interestingly, the lifetime risk in less developed countries is lower than it is in developed countries.

Dr Shubulade pointed out that very interestingly, it’s been found again and again and again, that the rates of psychosis in black people in white countries is much higher than you would expect. it’s higher than the majority white population. And it’s higher than this 1% prevalence and in the UK, for example, it is thought to be at about 4% to 5%. So one of the questions is, why is that? The problem is that people often say “Oh, This is schizophrenia.” But what we know, there’s been loads of debates about this over the years. And we know that unfortunately, those debates have kind of been so polarized, it’s either it’s been from one extreme to another, where it’s that people are being misdiagnosed full stop, and don’t have any mental health problems, any more than anybody else, to black people have schizophrenia, because they’ve got a genetically that they’re genetically predisposed to that.

Genetics and Schizophrenia

Dr Shubulade mentioned a study where they follow those people up for the next 10 years and what they found is that the rates of psychosis over time have changed. In fact, they’ve increased, but they sensibly looked at the rates of psychosis in different ethnic groups and the found was that there was a difference in the rate the change and in the rates of psychosis over time. So for the white patients the rates of psychosis have actually increased over time. Interestingly, the people of black Caribbean heritage, even though the rates of psychosis decreased, they’re still higher, but they had decreased over time. That was only a 10 year period. What that tells you is that that actually, these differences that we’re seeing cannot be genetic, because if it’s a genetic cause, then they couldn’t change in such a short period of time, because genes take hundreds and hundreds of years to change. They don’t change in a period of time in a short time together 10 years.

It’s likely that psychosis is heterogeneous which means it’s different types of conditions and number of conditions with similar features caused by different things. That means there’s a range of factors that combine to cause it, to push us into psychosis, there are different routes into psychosis, your genes might make you vulnerable. But just because you’re vulnerable to psychosis doesn’t mean it’s going to happen. If you’re born prematurely, it probably increases your risk. If you abuse drugs a lot probably increases the risk.

Dr Shubulade mentions something that relates to my mothers experiences

Dr Shubulade mentioned that we know now there’s a range of early social and psychological adversity, such as separation and parent being a migrant, growing up in a new difficult community. As the migrant grows up in a city being bullied or abused (think of 1960s racism). Basic equity and discrimination all seem to be associated with an increased risk of psychosis. As Dr Shubulade spoke of these terms, my attentioned turned to what my mother went through due to the above and how this could have contributed to her developing Schizophrenia in later life.

Dr Shubulade stated that for certain ethnic minority groups, it looks easy to go on to social media and chat boards, where you see people saying that they’re going to vote for sector services, because for help with eating disorders, it’s not that people aren’t attending mainstream services. E.g. For Attention deficit hyperactivity disorder (ADHD) those are higher rates and ADHD is something that is very commonly seen in people in prison. ADHD is the kind of thing that means that you can’t, stay on at school very well, and you have difficulties. But if you get help for it, when you’re young, you don’t end up being at the different school, you end up giving being given support. If it’s not recognized, you end up being labeled as a naughty kid and being expelled.

Where Racism fits in all of this?

So what about racism? Is that a risk factor for mental disorder, there of course are different types of racism such as individual racism which is personally mediated. We also have institutional and structural and is internalized, Dr Shubulade reminded us that individual racism is the overt or covert racism, it can be intentional or unintentional. Prejudice is based on the assumptions about the abilities, motivations and intentions of another person according to the race. Discrimination is the actions and behavior that you do against that person because of your negative assumptions about them. which can manifest as a lack of respect. So you know, shopkeepers watching you when you walk around the shop.

Dr Shubulade stated that as a senior doctor, it doesn’t matter when she goes to the shop, because of her race there can always be a situation where security follows her around because they think she will steal something. And that’s not, that’s simply because she a black female, devaluation being surprised at a person’s competence. This happens to her to a point of dehumanizing experiences, because people think that if you’re black, you must be super strong, like an animal or something.

Dr Shubulade reminded us that very recently, some really tragic instances that have happened in the nation, you know, what happened with Kevin Clark.


COVID and Race

Dr Shubulade continued to point out that know lots more black and Asian people have been dying from COVID. And yet, we saw right at the beginning that that was kind of dismissed and not thought about why that might be. If it was thought, or maybe its genetic. I mean, I always like to use the term BAME, because I think that it kind of makes people forget that these are all different types of people, black people, Asian people, Filipino people, you know, do it Orthodox Jewish people have all had genetic differences. But there also was social factors. Dr Shubulade mentioned these are associated with an increased risk of developing mental health problems not just the COVID situation.

People can’t get access to health, work and social support, and if you get access to employment, it’s no employment or poor quality employment. Its difficult for BAME community to get access to the same medical services depending on the same environment that you live in. And very importantly, there’s a reduction in access to power. So there’s a difference in access to power, including access to information, the information about your own history, not just one part of it, and difference in access to resources that includes wealth and organizational infrastructure. And very importantly, access to voice your situation. Dr Shubulade felt that we have seen this very much in America in the leading up to the elections, where whole parts of electoral wards were discounted.

Not only just to say about social factors, but social structures that we have, which have been around for hundreds of years. People are used to them, they have become institutionalized.


One carer member raised the point that it was an really interesting presentation, because there’s a number of factors in there that cross over into some of the work that they themselves had done previously. The carer was interested about the rates of psychosis that have decreased over that 10 year period. Is that drop those rates? Is that related to medication? Because medication has been changed? Or what was the reason for the drop?

Dr Shubulade responded stating that it is incident rates, so that what that means as in new cases of psychosis.

Another carer wanted to know what Dr Shubulade is doing to support the carers of the patient be it under psychosis or to stop carers from becoming the patient? And mostly, how is she showing that they’re being treated equally as carers?

Dr Shubulade pointed to The Patient Carer Race Equality Framework, she reminded us that the word “Carer” is in there. The way the patient care race policy framework works is that first step is you go out to the community to find out what their needs are. With SLaM there’s already work on partnership groups between each of the boroughs that SLaM serves. Those partnership groups consist of people who are people with lived experience for themselves as individuals, patients, but also carers as well. And in fact, there might be more carers than patients who are involved in each of the four groups. So already, there are carers who are involved in the engagement work. Some have been trained in some of the processes that you need to be able to understand how to make change. So quality improvement techniques, and committee work. and they are all involved in the different work streams. So one is about developing competencies. One is about engagement work. One is about dissemination.

The carer pressed the matter and felt the reason why they asked this question is that they never see many statistics on how carers are being supported. If you show them these great statistics regarding our service users when will there be statistics to show that carers are being treated equally?

Another carer member mentioned what she noticed in housing estates, going to school, seeing her peers, especially young black boys, who were extremely, highly clever, in the middle of their a levels, dropping out through mental health, getting schizophrenia, and committing suicide, it’s just unbelievable what she has witnessed. While this is going on, she mentioned the Dr’s evidence is based on percentages, so portion of people will have certain outcomes. And the problem is when you get the budget for this ever decreasing “moving” budgets, more equally of these different groups, what can happen, you’re actually moving smaller budgets. So your actual outcomes in numbers might actually even be less than. So people will then say to you, oh, well, you know, proportionately, you’re doing better. What’s your problem?

Another BAME member mentioned how they were heavily involved in SLaM’s PCREF meetings, but the crux of what came out today, for them is it’s never presented in the other PCREF presentations. There is not sufficient space for members to practice free speech, basically, because it’s very structured, because there are elements within these PCREF groups that still are being controlled. And still somebody having more power than the people that the measures are supposed to be impacting, or they’re supposed to be engaging with, which means decisions are made. And so we are not aware of because the system has an agenda. It is like SLaM has to get things done in a timely fashion. And if we as business people, other people, and other things don’t have the time, because it’s not a full time job. We’re not included.

The BAME member went on to conclude, that even as a community leader, the people are heading up and running, setting the agenda that disseminates the information. Because as if we don’t have the resources, because we’re all giving our time for free. What we’re hearing through these meetings is that they’re recruiting activists, there are forms that everyone has to sign up to, to say that we’re an activist, and that’s what they are hearing about a lot. When they asked for what’s their definition, Slam’s definition of an activist, there just does not seem to be a definiation

The forum member felt offended when they heard “join us” at the peak of activism thinking, a lot of us have been doing activism all of our lives. We’ve been doing this all of our lives and so to hear such a corporate organization say to them after so many years was offensive.

Dr Shubulade felt it was the community driving the PCREF project, but did insist that members of the PCREF group not give up on engaging with SLaM. Dr Shubulade felt PCREF is a competency framework and the idea for it, is that it is a how to make to make a difference that the BAME forum member mentioned was like building up assets in the community and having the community lead or work together with SLaM. Dr Shubulade felt there is some way to go, but we can all make a difference.

Dr Shublade concluded that she need to tell the group that right now, there has never been an opportunity like that is now to make a difference. And she would ask people to persevere. She feels it’s not a straightforward process and it is a new, although the idea aren’t new, but the process is different and it may be something that there’s always going to be someone who seems to be driving it and that someone isn’t always it ought to be. But gradually over time, things will change.

Danielle Perlman presents South London Listens

Danielle started her presentation by commenting on how she feels Dr Shubulade is amazing. And she was really taken aback by seeing her presentation and hearing all the engagement in questions. So in a way, she is very glad that we spent more time on on PCREF. And talking about it because she thinks it’s such an important piece of work.

Danielle wanted to engage the BAME carers group on the ‘South London listens’ project

Danielle also wanted to give a shout out to Brenda because she made a friend last year when Brenda did Mental Health First Aid training together. Since then they have kind of been each paths having crossed last time they met when in the Lewisham ‘South London lessons’ event which was held by local leaders in in collaboration with ‘CitizensUK’.

Daniele then described who are citizens UK, they are a community organizing, and national charity, and working on bringing people together to share stories and experiences to bring the change on what matters most. So what they are talking specifically in South London listens, which via the ongoing pandemic we are all experiencing and how that is impacting not only our physical health, but mental health within our communities.

Danielle wants to be asking key questions around what in relation to pandemic is putting pressure on communities mental health, and what can we do to support our communities. South London Listens came out of a number of sites that we that we held last year to work on engagement not within our SLaM services, but within communities. This is so when people are starting to experience a decline in the wellbeing, what can we do to be more supportive? Because that was on one of our psychological resilience. So far We’ve listened to 4000 people across the whole of South London, including SWLSTG NHS Trust and Oxleas NHS Trust. Essentially, when we say we’re listening, it means that people have been trained in the techniques of community organizing. So we’ve trained 350 people in the methodology of listening.

Normally, we’ve all been online, since usually we would be fully face to face, but it’s not in person or house meetings. Moving on Danille wanted to asktwo key questions where we give everyone in the group the same amount of time to contribute. The BAME carer forum moved on to a workshop where members contributed to the following questions.

The first question that was asked is in relation to the ongoing pandemic and lockdown that we’re experiencing and thinking about our well-being, what has been putting pressure on you, your family and your community?

The second question was what could really what could relieve the pressure and each of us would take a minute to contribute and to share something about our experience around the 2nd question.

Young Carers Action day 2021

Welcome back to another Blog post from Matthew Mckenzie, unpaid carer over in South London, author, activist on my projects called a caring mind.

This Blog post supports the national carer charity – Carers Trust – Young Carers action day for March 16th 2021, but why is it so important young carers get such recognition or even an event to highlight their caring role?

Basically, Young Carers Action Day is an annual event led by Carers Trust. It raises awareness and calls for action to increase support for young people with caring responsibilities.

To see the video of this blog see below.

For 2021, Young Carers Action day will be about Protecting Young Carers’ Futures and making sure that all young and young adult carers get the support they need to go after their dreams.

As a young carer myself…all those years ago, I never gave it a second thought what future I could possibly have, I just kept doing what I was doing, providing care and support. Now with the strain on how schools, health and social care services, it is now even more important to raise that awareness for young carers and also get young carers involved to tell their story and give them the chance and confidence to campaign on what they want for the future.

When young carers think about their future, they think about developing their skills, about what they want to do in their career, their dreams and aspirations. Caring for those you love or support is an honorable role, but it should not define our future and should not hold people back.

With support from schools, carer centres and those who can help make change. Young carers are encouraged to campaign, make a statement and help raise awareness about young carers, especially in schools. Not everyone in schools or colleges can identify or are even aware of young people who provide unpaid care. We have young carers helping or spending large amounts of time looking after someone, which could be helping to keep that person clean, cooking food and cleaning, advocating and being there for that person. All this takes time and energy and we should recognize the added strain facing young carers…..it should be about action and keeping that awareness going.

Carers trust a national charity focusing on making a better future for carers young and old have a wealth of resources for those especially young carers wanting to campaign.

These being

  • Creating a Young Carer Skills Journal
  • Campaign Packs with logos
  • Young Carers Action Day posters
  • and even just to find out more information about Young carers action day.

Please check out their site on https://carers.org/young-carers-action-day-2021

Its important we as a community and society help give power for young carers to help shape and protect there futures…..they deserve it

Joint Southwark & Lambeth MH Carers forum February 2021

Welcome to february’s Southwark & Lambeth MH carers forum update. This forum is aimed at those who care for someone with a mental illness. The forum gives families and carers a chance to understand the complexities of mental health and social care services.

For February, we had the following speakers who were kind enough to have a chance and engage with carers, even if it ended up as a friendly debate. Although the forum represents Lambeth & Southwark carers, membership is open to many carers outside those boroughs, because I feel carers should network, connect and learn from each other.

The following speakers for February were.

  • Lee Roach who is the SLaM’s Occupational Therapist and carer lead for Lambeth inpatient wards
  • Rebecca Martland who is a PhD Researcher and Physio engaging with carers on the High intensity treatment exercise
  • Sam McGavin & Sophia Stevens from Southwark Council developing Southwark’s carers partnership
  • Annette Davies who is a carer working towards developing stronger networks to carers including a BAME carer group.
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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.

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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

Continue reading

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