Category Archives: Lewisham BME Mental Health Carers Forum

Bromley, Greenwich & Lewisham BAME Carer Forum August 2021

This is a brief update for my BAME mental health carer forum covering a mix of London boroughs between Oxleas NHS Foundation Trust and South London & Maudsley NHS Foundation Trust.

Obviously out of my 6 carer groups, this forum focuses and discusses on the unique experiences of Black Asian Minority Ethnic groups. I know some people want such groups to be specific, but to be fair a lot of the topics raised in this forum do focus on the afro caribbean element, although some members are mixed from the Asian community, which is growing as members from other MH NHS trust attend.

The speakers for the month of August were

Malik Gul – Ethnicity & Mental Health Improvement
Jacqui Dillon – Race and mental health
Cordwell Thomas – Black Thrive
Dawn Irving – Maudsley NHS Quality improvement

  • Malik Gul presents on Ethnicity & Mental Health

Malik was really pleased to be among carer members of this forum. Malik felt the issue of race and mental health is not new, this is especially in the field of discrimination and racism in the services of our communities. Malik stressed that what we’ve had to endure as black and brown people has been known since we first landed in this country, But since the main kind of population of migration into this country, following the Second World War, and what is euphemistically known as the Windrush generation.

Since the days that we’ve arrived in this country, we have been discriminated against. Racism is built in to the very fabric of the systems that we all live in, and we must admit that it is a part of the system, and all of us in this conversation have experienced that. We’re all a part of it and we have all been discriminated against, in one form or another.

what Malik finds really interesting about the work he does, is that he has been working in Wandsworth at the Wandsworth Community Empowerment Network for the last 20 years.

More info on the Wandsworth Community Empowerment Network

It is now their 20th anniversary and the organization was founded in 2001. The thing is the organisation knows about the history of black discrimination. Many of us will know about David rocky Bennett, a black man, Rastafarian man, who was in mental health facility in Norfolk, and unfortunately there was a dispute on the ward, something really minor, Malik thinks it was about who could use the phone and who somebody jumped in front of the queue, or something like that. He was held down by the staff, and died in mental health services, what is worse is this is just one of the many cases of ethnic minorities dying not of mental health services, but within mental health services.

So the history of black people in mental health services being discriminated against is a story that we’ve all lived and experienced for the better part of 40 to 50 years. Malik felt that he has to us that nothing has changed.

Malik works very closely with Southwest London & St. George’s mental health trust, and also very closely with South London & Maudsley as well. In fact the new chief executive of SL&M is David Bradley who was the former chief executive of SWL&STG. Malik mentioned how he worked with him for about seven years and over the last 20 years, if you look at the figures for black people where it comes to over representation in medical health services for 20 years, it shows little to nothing has improved, and in fact, in some cases, things have got much worse. Malik mentioned that he has great admiration for David because he always had the foresight to work with the community and is bringing over ideas from his previous MH trust over to SL&M.

Malik challenged us that if you go on to the wards of Springfield hospital, as he does on a regular basis, about 50-60 70% of the people on the wards are for black and minority ethnic communities. Malik pointed out that we had to look at the over representation of black people in communities particularly in services particularly black, Caribbean, and black African.

Malik stated that he has to say that our mental health institutions are not the ones who are going to address this type of problem. He felt SL&M is not the solution to over representation of black people in mental health services, nor is Southwest London St. George’s mental health trust. Nor are any of the institutions that we are relying on to fix this issue. They are not going to address the over representation of black people in mental health services. It will have to be lead by the community, but there is a power problem, an owership problem a distrust problem. This overrepresentation in mental healths services has been going on for so long that the community has felt apathetic to any drive in order to change the status quo.

There was a very long discussion on what was needed to begin to address this issue, but the conclusion is it must from ethnic minorities, but controvesally we cannot expect the victim to solve the problem as we cannot expect the masters tools to change direction.

Jacqui Dillon presents on Race and mental health

Dr Jacqui wanted to talk a little bit about her own experiences, and on why Matthew invited her to the BAME forum. Jacqui Dillion is the former chair of the national hearing voices network, which is a user led charity that was set up about 30 years ago to provide an alternative to mainstream psychiatry.

Jacqui felt she is basically a survivor. she has used psychiatric services and one of the things that she often says about why she has worked as an activist in mental health for 25 years, is because her experiences of psychiatrists, which unfortunately was pretty devastating.

Jacqui felt that one of the things is if she managed to survive services, she would do all she can to try and change them. So that’s what she has been trying to do for about 25 years now. One of the things that she thinks is really important in terms of what we’re talking about today, in terms of the hearing voices network approach is that we do not advocate a Eurocentric model of the mind.

She felt that this is one of the problems that Malik talked really passionately and eloquently about on the huge over representation of black, Asian, and other minority ethnic people using the mental health services. One of the things that’s really important about the hearing voices approach is that this space within that approach is to both acknowledge the live reality of racism and oppression, which in her experience is often taboo in traditional settings, a lot of people flinch and are very frightened, and can get quite defensive about acknowledging that black and Asian people are massively over represented in services, and what’s at the heart of all things, which ian macpherson talked about in the macpherson report.

Our colonial history is built into the fabric of the these institutions, and things like unconscious bias that professionals come with, and often they’re not aware of their own biases, and then making treatment decisions based on some quite racist assumptions that have been intertwined with such systems.

Jacqui feels a lot of despair, about the over representation of many different people from different ethnic backgrounds, although she is really uncomfortable with the term minority ethnic groups, because since she lives in Hackney people from black, Asian and other minority ethnic communities are 50% of her community. So she finds the description a bit reductive and these kind of acronyms we use can be a little bit dehumanizing.

Jacqui also felt she hasnt seen things improve, there used to be an organization’s called family health, ISIS, which she worked with, about 17 years ago with someone called Dennis who she did a lot of work with in terms of trying to bring the hearing voices approach to FHI as an alternative to traditional psychiatry. She was sad to hear that Family Health ISIS is now closed as with many community groups looking to set up protected spaces for those who are vulnerable and what remains are these massive mental health trusts overpowering the voices of the vulnerable.

One of the things she would like to see is a move away from locating people’s problems solely within themselves and seeing that we’re all part of a system. Jacqui feels that one of the problems with the biomedical model, is by saying that people have illnesses, what we’re doing is we’re kind of saying, madness and distress don’t really make sense and limiting away the causes of such illnesses such as the pressure of society, racism, isolation from the community, no safe places, lack of resources, lack of community, lack of understanding and so on.

Jacqui felt that we give illnesses these bizarre names like schizophrenia, which she thinks, further mystifies what are actually very human ways of coping with devastating and overwhelming experiences. So she personally does not subscribe to that kind of biomedical language and feels that it is really unhelpful. There’s actually tons of research that has shown that using medicalized language actually increases stigma and decreases people’s empathy. Jacqui mentioned that someone put on the zoom chat about how trauma informed her, Jacqui felt this was more interesting about how something like trauma informed care can develop, but talking about language is a problem where the term trauma can minimises experiences. We have a long way to go in psychiatry before we even get to the idea of recovery.

If you want to know more of Dr Jacqui Dillon’s work see the link below.

http://www.jacquidillon.org/

Cordwell Thomas presents on Black Thrive

Next to present was Cordwell thomas on his role within the organisation Black Thrive. Cordwell spoke about what Black Thrive is doing to promote and also promote what the imbalance of what Malik and Jacqui clearly stated, and also the questions coming from what carer members raised, Cordwell felt there is a concern on black individuals within the black community, having a say in their mental health and promoting the services and shaping the service to be fit for purpose. Cordwell wanted to go into a small conversation about the Patient Race Equality Framework.

On Cordwell’s role, he has several hats. He has a full time role mainly within the community, one of which is on the Black Thrive committee. On the Black Thrive committee, there are various agencies from public services, these are ranging from social workers, public health officers and directors, where they also have the police and many more. So fortunately they also have directors and decision makers who are on the table of Black Thrive and they shape the way they engage with communities and how those services engage with black communities in particular.

So, within that role Cordwell helps to represent the community, but within Black Thrive, he is an independent advisor, which enables him to liaise with South London & Maudsley NHS, and also help develop services within SL&M. In particular those services that have been disproportionately affecting black individuals within the community, like individuals from Caribbean descent.

With such roles it is what brought him to this forum to have a conversation with us, because one of his roles, actions or projects, is to be the lead person from the black community driving the trusted friend project,

Cordwell mentioned that he presented with a colleague from SL&M the trusted friend project, a couple of weeks ago at the Lambeth Carers Hub peer group, which Matthew attended. from that forum Matthew requested us to speak about trusted friend for this forum. Basically what it’s about is if you imagine a situation where you’re in a strange environment, ie as if you’re now a psychiatric inpatient, at one of SL&Ms hospitals, if you imagine yourself in a strange environment and you do not have a voice. Now the role of the trusted friend is to ease and promote that de escalation. So the impatient ward may go through all their various roles of de escalation on an issue, however the trusted friend will come on the ward and be that middle person that liaises with the ward staff and say what the wishes of the individual are.

More info on Black Thrive

There was most in-depth discussions about other Black Thrive projects, but for now this was the brief update of the Bromley, Lewisham & Greenwich MH carer forum for August 2021

Bromley, Greenwich & Lewisham BAME Carer Forum July 2021

Welcome to a brief update of my BAME carers forum for the boroughs of Bromley, Lewisham and Greenwich. The focus is one of the 6 carer forums that focuses on discussions, awareness and campaigns regarding unpaid carers from an ethnic background specifically caring for a ‘loved one’ suffering mental ill health. Forum members do not have to have someone using the services, it could be they are caring for someone who might not be using the services of South London & Maudsley NHS Foundation trust or Oxleas NHS trust.

The BAME mental health carer forum update for July had the following speakers to engage with carers, although not in order.

  • Lola Jaye (psychothearapist, author, speaker) – Why race matters when it comes to mental health
  • Emma Wakeman (St Andrew’s Healthcare)- on The Missing Voices: Carers’ Experiences of Section 17 Leave (Mental Health Act 1983)
  • Kuldip Kaur Kang (West midlands trust) – on Religious and cultural needs of BAME mental health inpatients request
  • Rachel Nethercott – Carers UK focus on diversity unpaid carers
  • Leonie Down (SLaM Lewisham Head of Occupational Therapy and Partnerships Lead ) – Update on Patient Carer Race Equality framework
  • Dominic Parsons – Bromley, Lewisham & Greenwich Mind on their diversity initiatives.
  • Professor Shirin Rai from Warwick University – On the Impact of covid-19 on bame carers

Judging by the speakers, you can see the BAME carers forum is held online and is also attended by mental health NHS trust staff working to understand the issues that affect ethnic unpaid carers and patients.

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Bromley, Greenwich & Lewisham BAME Carer Forum June 2021

Welcome to a brief update of my BAME carers forum for June. The BAME carers forum is an online forum aimed at those who care for someone suffering mental illness, except the forum covers ethnic experiences regarding caring along with discussions on how serious mental illness affects minorities and diverse communities.

For June 2021 the speakers were

  • Faith Smith (carer) on her Section 136 project
  • Keisha York from BAME in Psychiatry & Psychology
  • Sharon Jennings of Goldsmiths University
  • Emma James Senior Policy Advisor at Barnardo’s
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Lewisham BAME MH Carer Forum April 2021

Hello everyone. Welcome to the April update of my BAME mental health carer forum. This is one of the 7 carer forums that I run that is specifically aimed at ethnic unpaid carers who care for someone suffering mental distress or mental illness. It is hard for unpaid carers to often get a voice, understand mental health services or even be identified by health and social care. There is a push for ethnic inclusion, but a lot of it is patient centered. So this is one of the reasons why I started a BAME MH carer forum, there are of course more to come.

For this month’s speakers we had the following.

Dr Juliana Onwumere who is a Senior Lecturer and Consultant Clinical Psychologist. She is also the Institute of Psychiatry Psychology and Neuroscience Carer Champion

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Connecting with BAME mental health unpaid carers

Welcome to my latest unpaid carers blog for May 2021. As you might already know, this website focuses heavily on mental health unpaid carers. What I mean is the focus is on families and friends caring/supporting someone who suffers from mental illness.

I run many peer support groups and forums that bring unpaid carers together. The groups are carer led, but try to work with the mental health and social care services. This helps to give unpaid carers a voice and also a chance to understand the complex mental health, health and social care system.

As we all know service users or lived experienced have a range of avenues to express their voice and I guess that is important because they need to, after all they are using the mental health services and the quality of their lives and wellbeing is often tested. All I ask is that friends, families and those emotionally tied to mental health survivors should not be forgotten.

Unfortunately this needs to not only extend to mental health unpaid carers, but those from ethnic communities. Drill down deeper and you will find different levels of quality amongst ethnic unpaid carers. Usually black unpaid carers tend to struggle as their loved ones fair worse off in regards to mental health services.

Below is just some key factors.

  • Black men were more likely than their White counterparts to experience a psychotic disorder.
  • Large numbers of black people more likely than average to use high end mental health services.
  • Detention rates under the Mental Health Act higher for people in the ‘Black’ or ‘Black British’ group than those in the ‘White’ group.
  • Even with higher detention rates, the outcomes for black service users are still overwhelmingly poor.
  • Suicide rates are higher among young men of Black African, Black Caribbean origin, possibly due to other complex factors being :-

  • Racism
    • Access to quality services
    • Opportunities
    • Mental health stigma
    • Inequalities

With all the above mentioned, it does not take long to see the impact filter down to black families and unpaid mental carers. The strain is increasing and black unpaid mental health carers tend to just shrug their shoulders and cope with it all, as they have been trying to cope with complex inequalities while pushing back to avoid the outcomes their loved ones experience. It does not take long for a BAME mental health carer to cross that line to BAME mental health survivor….if they survive that long.

As an unpaid carer, I have experienced the hard road many BAME carers have faced and this is why formed and pushed for connections with many other BAME carers, they do not have to be black as other ethnic carers can find solidarity and identitfy unpaid mental health carers face.

There is still stigma, predjudice, discrimination and inequalities in society, a lot of things have changed and some things have improved, but it would be foolish to ignore the impact of race and mental health.

The candle needs to burn at both ends as BAME mental health carers need to come together and share their experience with the mental health, health and social care services on what is working and what needs to work.

If you are a BAME mental health carer, check out my online BAME carer groups below.

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.

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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.

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Lewisham BAME MH Carer Forum November 2020

Welcome to the November 2020 update of the Lewisham BAME carer forum. This forum is aimed at diverse carers in the borough of Lewisham, although carers and forum members from outside the borough are more than welcome to attend. When I am talking about carers, I mean unpaid carers who care for someone suffering mental illness.

For the Novemeber 2020 forum update the presenters were the following.

Professor Frank Keating – BAME community experience with the mental health system.
Dr Emily West – The challenges on Dementia, Palliative and end of life
Dr Laura Cole – Care home research
Sherone phillips – NHS England Palliative and End of Life Care

Usually all of my carer forums tend to have speakers or those who engage with carers attend locally, however due to the corona virus and social distancing, the option is now available to increase networks to wider regions. The BAME carer forum for November had a dementia and end of life theme to it.

Dr Emily West presents

First to speak was Dr Emily West from UCL Division of Psychiatry. She spoke about a project called DeCoDe-H – Improving dementia care in acute hospitals.

Emily mentioned that they are looking at ways to basically make it easier to recognize and treat discomfort in people with dementia who can’t communicate, and then work a little bit on nutrient, which is one of the studies on caring for with people with dementia. The project also looks into how can they can best support family carers. Dr Emily also spoke about another project called Endemic, which was their COVID specific project, which kind of brings the two projects together.

Dr Emily mentioned to the forum that she inherited the project from a fellow researcher I think her name is Nuriye Kupeli. Dr Emily gave credit on the amount of work researcher Nuriye did. Dr Emily has also been working with Dr Nathan Davis, who’s a senior research fellow and is also was very interested in dementia, palliative care, and decision making, which together is called “Rule of thumb interventions”.

UCL Marie Curie palliative care research department

The most well known version of this is the “stroke intervention” and how it helps you to recognize and remember a very easy way of recognizing a stroke and getting help.

Dr Emily mentioned that Dr Nathan’s work is very carer focused and he’s looked at supporting family carers of people with dementia who are at the end of life, as well as helping dementia sufferers own decision making abilities. One in 14 people over the age of 65 have dementia, which is over 850,000 people in the UK, and almost half of carers have a long standing illness or disability themselves. So you have to be particularly aware of the needs of the people that are looking after the people that have dementia.

Dr Emily mentioned 36% of carers spend over 100 hours a week caring. And as well as this general context, they have been looking at how it affects BAME community specifically. So about 3% of people with dementia, which is about 25,000 people are from BAME communities and this number is expected to double by 2026. It’s predicted at the moment that South Asian communities are going to have the highest increase in the total number of people with dementia and current research tells us that BAME communities have a lot of challenges in dealing with dementia, almost every step of the process.

It was also mentioned that there can be delays in getting diagnosed with dementia and that sometimes this can be difficult to access. We know that BAME communities find it harder to access the services and we know that people from BAME communities report poorer quality in end of life care and as found in the Marie Curie report in 2014.

A big national drive on the end of life care strategy study in 2008, found a number of related inequalities and there’s a general feeling within policy or aim within palliative care that the UCL researchers are working towards that palliative care be seen as a human rights. Its also something that’s really enshrined everyone who has the right to have a good and well provided for death and dying process. It was stressed that it’s more important than ever to address the kind of base inequalities stopping a part of the population.

Dr Emily continued that it’s also increasingly recognized that the role of families and carers and members of the public in medical and health research is invaluable. Emilies research use a lot of what are called PPI panels. So public and patient involvement. And so PPI panels helped us throughout the research process to make sure that the way that we’re communicating is appropriate, and at the right level for the people that need to access the information. And they help us to design research processes, so that we’re not asking too much, or on the other side, we’re not assuming that people can’t do things aren’t willing to do things, but they are.

Those affected on those illnesses are usually involved in steering groups, so they help to shape the research agendas. This is something that’s open to everyone. Dr Emily did point out that if anyone’s interested, she can show people how to register for these kind of things. Dr Emily was happy that people are more widely being involved regarding dementia and end of life. This is especially on those with direct knowledge of certain illnesses and situations, they can help researchers develop more knowledge on such situations, and also knowledge how things have been across the span of weeks or months or years regarding those illnesses.

Dr Emily was aware that as researchers people can inform them and maybe tell us when things are okay and when they’re not. It was mentioned that the people that carers spend every day will observe what has previously been seen as an observable and can help facilitate voices of diverse populations. Researchers can’t reach everyone but they do try to reach and involve carers, patients and networks of people. So their aim is to represent all of the voices that should be heard, when researchers doing things like making clinical guidelines, or policy decisions.

Dr Emily West moved on to talk a little bit about a recent study that they have been doing. It’s a kind of case study, that she would be really interested to hear the kind of themes that they found when they talked to people. Emily resonated with people’s experience here. she knew that there’s a lot of experience in this group, and caring for people with lots of different illnesses, lots of different social setup, social challenges. Dr Emily was really interested to hear if this kind of applies the situation that members have been living in recently, too. COVID-19 is of course has a huge effect on health and social care systems.

Dr Emily continued by saying that they have had to do some rapid response approach to care planning and decision making because hospitals have been overrun regarding the virus and GP surgeries have been locked down and everything that people relied upon as normal has changed. So systems are having to respond to changing needs all the time, just as everyone else is responding to change in government guidelines, changes in where we can and can’t go and what we can do. COVID-19 has affected older adults much more seriously and a lot of these older adults have dementia, thus carers are having to make multiple very different care decisions in this situation.

Dr Emily said that they developed a decision aid and which in practice was kind of a little booklet, and just 20 sheets of a4. They wanted to do this to help carers of people with dementia to make decisions in these very difficult and very uncertain circumstances. We know that helping people make good decisions when things are unclear, can help grief after bereavement. It can also help people to feel like they know the situation more and it can even have an effect on things like arguing with your family about Which decisions are made and which decisions are being made. So there’s a good kind of basis for why we should help people make decisions.

Researchers have looked at doing this from a combination of different data sources, they wanted to hear as many voices as possible. So they interviewed helpline staff from from assignments UK and from Marie Curie, we looked at academic literature and newspapers and things for things that have been written about already. The researchers also looked at the online forums for as long as UK as well, where people kind of go online and talk to each other. The forums are not professionally led at all, it’s just people with a common interest talking about this. Dr Emily told us about what they found from looking at the literature the publisher already exists. So this review was looking at place of care in place of death and older adults.

Dr Emily then talked about things that specifically related to BAME experiences in what exists already. So they found the decision making seemed to be key, particularly within the role of the family. It was found that generic planning initiatives didn’t work well at all and that there was a much more positive response to truly tailored decision making schemes that took into account the way that people, for example, practice religion, or day centers, or community centers or festivals and things that people went to.

In an American study that the UCL researchers looked at as part of this, there weren’t any differences between ethnic or racial groups, in terms of how much they wanted to discuss end of life options with their doctors with hospital staff, but there was a difference in how much they ended up doing. So the problem is clearly on the side of the medical world here, because people want to discuss this, but for whatever reason, they’re not getting the opportunity to do So. As well as these general findings, they found some specific things that related to people with dementia and carers. One of these was the involvement of proxy carers and decision makers. Dr Emily mentioned a lot of people at the forum were familiar with this, that when a person lacks capacity, and they can appoint or can have appointed somebody who can make decisions on on their behalf.

Professor Frank Keating presents on his research

Professor Frank Keating was to present to the carers forum on social work and mental health in the Department of Social Work at Royal Holloway, University of London.

Prof Frank talked a little bit about some of some of the things the myths around stigma and the black community. Prof Frank perfers the term black because I don’t like the word BAME as it doesn’t sit with him. plus he wanted the audience to think a little bit about empowerment and think a little bit about the role of carers in supporting an individual who’s experiencing mental health issues.

Prof Frank’s research started mainly since 2000, and has focused on a very tricky relationship between the African and Caribbean communities and mental health services, which has been his concern to try and point that out and try and find out why this relationship is so intractable.

In the report that Prof Frank did in 2002 “Breaking circles of fear” they identified that there was fear on all sides fear from services, fear from communities fear from errors, hear from families. And and that sort of seems to drive a wedge between these various groups. So his work is trying to see how can we improve? That as he carried on his work, he became more acutely aware that there’s a group of people who are really significantly disadvantaged in this. So his work then shifted from looking at the African Caribbean communities in general, to specifically focused on black men.

He continued to focus on African and Caribbean men because he found that this is a group of men who were most significantly disadvantage, and also don’t see seem to have more difficulty in relation to the recovery and more and a difficult path in terms of recovery.

So his most recent project, where Prof Frank mentioned Estella from Community Wellbeing who was involved in the project, aimed at trying to talk to black men. Prof Frank wanted to know on his argument was that there must be men who are in recovery or have recovered from from mental health issues. So he wanted to talk to African and Caribbean men who self identify as being in recovery. This was not a definition imposed on them, the men had to identify themselves as being in recovery. So in the research they talked to 30 men, and these were men in London. They also used Leeds because the funder asked them to explore other areas as well as London, But basically, what they wanted to know from the men was, what, what’s their understanding of the recovery, and they also wanted to know what support covered recovery.

What was really interesting was what the men were talking to the researchers about, first and foremost the men wanted to talk about their mental health experience, and their early life experience and this was really important for the men. Some of the men Prof Frank talked to was actually out to the interviews and this has been empowering for them, although Prof Frank was just doing his research. The thing is Prof Frank mentioned we just don’t get a chance to talk about our stories and so his message to us as carers, is really to find ways of talking to the person about their story. Because sometimes we get so concerned about their medication, we get so concerned about their support in hospital. But oftentimes people don’t get their stories heard and their stories to listen to, and find ways of getting to documenting their stories.

You can find more about Prof Frank’s work below.

Sherone Phillips – NHS England and NHS improvement palliative and end of life care program

Although Sherone works for NHS England and Improvement her main interest for engaging in the carers forum is because she is a carer. Sherone explained the difficulties of being a carer in which members were impressed and related straight away with her caring experience.

Sherone mentioned that we all know the figures, carers save the NHS and save the system a lot of money and energy, heaps of money, by the work that carers do, but carers do it because they love the people they care for and because they are there to support them.

Due to the theme of the forum Sherone spoke to us about how palliative and end of life care in the NHS as a partnership picture fits across the whole of the country. This isn’t just about London specific. The program for palliative end of life care sits around six principles about people

1 – That each person is seen as an individual.
2- Each person gets fair access to care, that there’s
3- maximizing of comfort and well being for the person who’s at end of life.
4- Their care is coordinated. So everybody involved, knows what they’re doing, who they’re talking to. And information is flows freely.
5- That all staff involved prepared to care.
6- That each community is prepared to help.

So the above are the six points that come out of the ambitions framework on life care regarding the NHS long term plan, universal personalized care comprehensive model, they ought to be six points for people. Where we work together and it’s not just about one team.

Sherone pointed out that the program includes all ages, from children who are palatable ends of life to adults and older people, everybody. Sherone also talked about NHSI (short for NHS England & Improvement) about program, to make sure that people with lived experience, so carers, people who have got a condition, which means they’re going to die soon, people who are at the end of their life with just a few months or a few weeks to live, NHSI will try their best to involve those viewpoints in what their developing. NHSI are not doing it alone they want to make sure NHSI are talking about equality, and making sure there’s minimizing or reducing and removing discrimination from all the different groups of people they can think about.

NHSI wants to focus on health inequalities from people who have got the poorest outcomes, the poorest health experiences who die sooner than they should, because they’re not getting the right support. NHSI are making sure that they are championing and pushing those discussions of those conversations through as they continue.

However what does this mean for people? What does it mean for you? What does it mean? For the people you love, what does it mean reality?

NHSI are talking about what personalized palliative and end of life care looks like. So in other words, what does it mean, at the individual level? Then the ambitions about the person seen as an individual and all those points, the six points mentioned, that this is about making sure that every stage of life, e.g the last stage of life is as good as possible, because everyone works together confidently, honestly and consistently to help the people who were important to us, including their carers. So that’s the statement, or does that mean in reality? Well, that the staff and the people that work with you, and with us and with our loved ones, have conversations at the right time and they have conversations at the right time with us, as well as with the whole the health and social care staff involved in in their choices about what they want to do, that people, including the carers have valued as active partners in the conversations.

It was exactly their findings that people want to know about what matters to them to be seen as an individual and that you have people who have good access to care and treatment at the end of their life, no matter who they are, where they live, or what their circumstances are, they should be supported with dignity, with care with compassion, and not with someone looking down their nose at you, that is a standard NHSI want people to experience.

NHSI want people to get the specialist care they need when they need it, and that their views and their preferences, what they want about the future care is known. These principles apply to care generally and support generally. So that’s the overview. As an organization that is part of the ambitious partnership, lots of different health and social care organizations are part of the ambitious partnership together with NHS England and NHS improvement, it is everyone involved in health and care, that design and talk about and plan for the services that make a difference

Dr Laura Cole presents on Care home research

Dr Laura from Kings College London wanted to tell carers at the forum about a study that they are conducting at the moment. Dr Laura is looking at residential respite for people with dementia and their carers. Basically Dr Laura meant a short stay in a care home. So not when somebody lives at home, and then they just have a breaks and maybe they spend a week or two or maybe more, but they come back home so they don’t permanently stay in a residential respite in a care home.

So the researchers know that respite may be quite beneficial for some people, because it provides a change of scenery, it provides the carer with a little break, and then the hope is that with that brake, the carer can continue caring for longer, and obviously, they’re able to do the things that they want to do, they can go on holiday, but also it is kind of a way of building resilience and getting strength back. Sometimes it can be something to look forward to as well. So it’s case of, I’ve just got a few more weeks to go and then I’m gonna got this lovely thing to look forward to or a break. And, and it can be beneficial for people living with dementia as well and as they have a break.

That is the reason for what the researchers are trying to do as they know that many people with dementia and their carers don’t access this service. So what they would like to do is interview people who have had the service, and then interview people who also have declined the service so that the reseachers can marry the two up and see what the the pros and the cons of residential respite are. Dr Laura had planned to do all this pre COVID so they were going to interview people in their own homes, and from from these two groups, so obviously, they still continuing with that, but they are doing it using zoom, over the telephone, though. They want to interview people living with dementia, and family carers about their experiences.

Lewisham BAME MH Carer Forum October 2020

Welcome to the October edition of the Lewisham BAME Mental Health carer forum. Its a bit of a mouthful of a forum, but this is the only BAME carer forum I have out of the other 5 carer groups I run.

For the October carer forum, Carers UK were kind enough to lend their Policy and Public Affairs person to the group. Ruby Peacock presented on what Carers UK have been doing for carers up till the coronavirus situation. We were also joined by Dr Siobhan O’Dwyer who is a Senior Lecturer in Ageing & Family Care at the University of Exeter. Dr Siobhan was joined by Artist Leo Jamelli who is working with Dr Siobhan to raise the profile of carers using art. More on that later.

For the forum we were joined by the usual carer members and some newer members, also in attendance was Debora Mo who is Greenwich CCG engagement lead. We were also joined by Nathan Lewis the Community Outreach Manager for Samaritans Lewisham, Greenwich & Southwark Branch. In attendance was Sophie the patient engagement officer from Healthwatch Lewisham who was the third and final speaker at the forum. We were also joined by Lisa Fannon who works for Lewisham’s Public Health and is very interested in how health and mental health is affecting Lewisham’s community especially when it comes to poverty. We were also joined by a governor from Guys and St Thomas NHS Trust who engages with residents of Lewisham, Wandsworth, Westiminister, Southwark & Lambeth on health matters.

UPDATE FROM RUBY PEACOCK.

Up first to speak was ruby from Carers UK. If you do not know already CarersUK is a leading national charity fighting on behalf of the 6 million+ unpaid carers. Ruby kindly attended the forum to update members on CarersUK latest intiatives.

One of the projects that CarersUK have run is called “Entitled harmony voices”, which looks at the experiences of BAME Carers. So as a kind of starting point, CarersUK not only examines the situation of carers, but also BAME carers from the 2011 census. Since the census is fairly old, Ruby admitted that some of the numbers she is presenting on is a bit out of date. She is going to try and talk as well about a little bit of the research CarersUK has done during covid-19.

CarersUK did some research for Carers Week this year looking at the number of carers during the pandemic, not only has the number of carers increased more generally in the population, just because of the aging population, but also because our health and social care systems have been underfunded.

Ruby pointed out that there is even more pressure on family carers and how our demographic will generally have changed. There has also been an increase in the number of carers more generally and she estimates to be about 17 % of the population that being 9.4 million people.

She also found 4.5 million people became carers during COVID-19, because there were people who were shielding who weren’t necessarily needing care for. There were also people who had COVID to add to the required care afterwards.

Ruby would estimate rather than the being half a million BAME carers, we would say it was closer to about 1.3 million carers at the moment. And so in terms of kind of what the demographics look like, there is a spread about the amount of carer that people have provided. So for the majority of people whether they are BAME carers or the general carer population are providing kind of zero to 19 hours cqre, there are the lower levels, about 15% of carers provide between 20 and 49 hours of care, and about 21% provide over 60 hours, which is really in significantly higher numbers. Ruby estimated that about 10% of the BAME population are caring around the clock.

Ruby continued that there are a couple of things that we know about the kind of carer population, she was going to talk a little bit about what we know in terms of experienced BAME carers more generally.

Ruby knows that carers are often in financial difficulty. And not only does caring come with additional costs, whether that additional heating costs or fuel because of carers transporting people to places in different ways, but also within the house, and with that paid for services.

CarersUK are also seeing that some services that used to be provided arent provided any more. So in the end the carer and the person being cared for or having are to cover costs out of their own money. This is often confounded by the fact that often juggling work and care can be really difficult. So we know that there’s about 1.2 million people who are caring who are in financial difficulties and we would classify that as inequality. Ruby mentioned that one of their ongoing campaigns is to kind of raise carers allowance, which we think is the lowest benefit as of its time, which she feels is just simply unacceptable in terms of providing that support for carers needs.

Ruby reminded us that carers struggled to juggle, work and care, and they found in research that 600 people a day give up work to provide care. It was mentioned that during the COVID, CarersUK have seen the increases being a real pressure on people being able to manage their caring responsibility alongside local services either stopped, or severely reduced.

There are also a large number of people shielding, and although some carers could access a furlough scheme it led to some really different experiences with their employees about what they were and what they thought what they needed.

Ruby pointed out that carers are often more likely to be lonely and that part of that is because it’s really difficult to talk about your experiences with different people. It can be really difficult to access breaks, which means you don’t have the time to be able to invest in your relationship, plus carers can be in financial difficulties, which means you can’t access the same sorts of activities that the other people can.

Ruby spoke at length of the other difficulties carers were facing, a good point was on the real emotional impact that people were on under in the month of April. One of the things that CarersUK found was that the majority of carers and 60% of BAME carers said they felt like they were reaching a breaking point. She felt that one of the things that it’s really important is that we don’t put people in the same situation they were in April. It was mentioned that not only were people incredibly stressed about caring safety for themselves, and keeping themselves and the person they care for safe, but they were also taking on extraordinary hours and CarersUK think its not possible for people to care for long period of time.

QUESTIONS FROM MEMBERS

One of the members thanked Ruby for her presentation, she felt a lot of it resonates with her personally and she would like to mention a couple of things that definitely impacted her during COVID. The carer member mentioned she was caring at a distance and she was very glad that Ruby mentioned the situations long distance carers face.

The carer mentioned during COVID, the person she is caring for had a fall and that he also went out well. He was taken to the hospital, by ambulance and so on. And because he had also has some underlying health issues, the hospital decided to check him out thoroughly. And lots of appointments were made some early in the morning. Plus the fact that he has a special needs, So she needed to be with him as his carer at the hospital during these appointments, to be able to hear what the consultants are saying to be able to ask questions, to give them his history.

Ruby responded that we don’t think the NHS does enough to recognize the role of carers and we’re also incredibly concerned about the change to government policies on hospital discharge, which dont provide and don’t suggest that there should be a carers assessment as part of the discharge. It is important to know who the family or who else is in the home and who will be providing that care. There is still a long way to go for Acute NHS hospitals who are slow to be carer aware.

Another question was on older adult carers. The carer was concerned that when Ruby sends off information to the government regarding younger carers or adult carers. He feels those carers will get support, but older carers will be left out. He was wondering if carer data was broken down into 3 categories as in younger carers, adult carers and older adult carers. Ruby mentioned CarersUK focuses on adult carers, but young carers tend to be the focus of another national carer charity, that being CarersTrust. I suspect AgeUK might focus more on older adult carers. Ruby also mentioned breaking down the 6 million carers into categories would be a massive task in itself.

Another carer wanted to expand on the issue of completing online surveys. She wanted to talk about access to digital services, and or probably people’s capacity to actually complete forms online. She asked if there something about the care coordinator sitting down and having some way of completing that form on behalf of the individual. Because whereas we used to be sitting in an office, and then somebody can complete it for you. And that was fine. but we’re now in this digital new way of working, not everybody has access to being on zoom, not everybody has access to the internet and not everybody has access to be able to print an application or form of an insult

Another member raised the point that the problem that is facing their NHS trust is that because the black and Asian people are so used to the inequalities within the services. They’re not even interested in filling out the forms to be quite honest. So we now need to find a way where there is less talking and more action.

Another carer gave an example of her experience as a long distance carer, while another carer member felt BAME people were being put in a box, but not categorised enough from being different from service users. There was still a lack and understanding of the needs of BAME carers.

With that I thanked Ruby for her time and thanked her for representing caresUK and coming to engage with BAME carers. I mentioned that I hoped that we can hear from CarersUK in the new year and continue relations with the good work CarersUK does in advocating and raising the carers agenda.

NEW PROJECT FROM EXETER UNIVERSITY – Dr Siobhan O’Dwyer presents

Dr Sioban wanted to talk about what they did around hearing from carers experience of COVID. They had a group of carers who they gathered right at the beginning of lockdown and they interviewed them every week for 12 weeks. So every week between April and June they heard about carers experiences. They are also going to go back in January as part of that research and that they have working really closely with different government departments, including the department of health and social care, department of Work and Pensions, public health England, CarersUK and also The House of Lords.

Dr Sioban wants to put together a briefing to each of those government departments and the various charities so that they have that information. They felt they done quite well with that project in terms of helping policy makers and and charities and local authorities understand the experiences of carers.

What she feels she hasn’t done too well is to actually engage the community and help the community see what a brilliant job carers have been doing through this time, and also have tough they’ve been doing it. And so in order to sort of shift to that focus in and work with the community, she recently got some funding from the council to do some large scale art installations to debate the challenges that Carer’s face during this time, but also to celebrate the amazing work carers do and the incredible bonds carer work so hard for the ‘cared for’

One of the things she really wants to work towards is to represent and celebrate BAME carers and carers from ethnic minorities, because she recognizes that they’re not represented in a lot of the research on carers or on a lot of the community discussions.

ARTIST LEO JAMELI PRESENTS TO THE FORUM

Lee mentioned in 2019 where he worked with Dr Catriona Mckenzie and Dr Sioban, the project they worked upon was an art projection of his own experiences of care. The art image was of his mother taking care of his father. The image was hand drawn and shows the human endeavor to continue to care. The art projection is called “the Invisible Carer”, which is a large-scale light projection designed to celebrate the often unheralded and crucial role of family carers.

Leo mentioned how he felt to portray mother’s experiences of care, but just in a small kind of loop. So it’s this idea of she was having to carry him instead of losing him, through also, with kind of medical health decline in slipping through her hands, but then finding the strength that most carers find

You can see the art projection in the link below.

The invisible carer site

what Leo hopes to do these projections is to bring much more public awareness about care, because it seems generally in health services, everyone does a good job, but it seems like kind of social care the poor cousin of the NHS. Leo feels it doesn’t seem to get as much public attention it deserves.

Leo explained more of the visual representation of the art projection and how large the scale of the projection. He mentioned if you look in the back distance, you can see someone in a restaurant, so it kind of gives you the idea of the scale as they are about three to two story is high. The focus for this year is to get a projection of a BAME carer from London to be involved in the new art work, which members were very interested in taking part.

CARER MEMBER RESPONSES

One of the members was interested on how long is this project for? because its possible that covid-19 lockdowns can affect the funding of the project. It was however stated that funding has already been secured for the project, only the weather could cause any disruptions when the artwork is projected on to a building. The aim is to project the artwork in Southwark.

HEALTHWATCH LEWISHAM ENGAGEMENT

Next to engage the BAME carers forum was Sophie from Healthwatch Lewisham. She is the patient experience officer for the organisation. The aim for her was to speak to the group directly to get feedback from health and social care services.

Sophie explained more on healthwatch do. Basically Healtwatch is the patients champion for people who use health and social care services, so that can be carers and relatives and patient service users. Basically Healthwatch takes feedback on hospitals, GPS, opticians, dentists, community health and they basically listen to what’s going well, what could be being done. At the end of every quarter, healthwatch will analyze all that feedback, and then produce reports which is passed on to the people who have the power to make those changes happen.

Many carers feed back about pharmacy issues and queries about hospitals. It was empowering to heave healthwatch engage with carers and I hope we can continue to have engagement from such a prominent organisation.

This concludes our update from the October BAME carers forum. I also want to note that I have released a carers news item. To subscribe click on the link below and select subscribe to get updates of the latest carer news.

https://mailchi.mp/f11c6f942a2e/carer-news-from-a-caring-mind

Lewisham BAME MH Carer Forum September 2020

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

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

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

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

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

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

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

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

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

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

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

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

Question and answer session at the forum

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

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

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

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

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

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

The impact of COVID and technology

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

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

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

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

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

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

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

Presentation from SLaM QI Peer Project Worker

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

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

Question and answer session regarding Quality Improvement

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

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

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

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

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

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

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

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

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

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

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

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