Welcome to my November update of my ethnic carer forum. I am slowly changing it from BAME to ethnic although most members who have attended over the years are not that fussed with the title, it is the discussion, focus and engagement regarding the challenges many minority ethnic carers face. The forum covers a large area mainly Lewisham, Greenwich, Bromley and Bexley due to my other carer groups in Greenwich and carer forums in Lewisham. The forum seeks engagement from South London & Maudsley NHS trust and Oxleas NHS trust half the time, but the carer group gets education and empowerment from national speakers regarding race, racism, complexities in mental health and so on.
For the November BAME carers forum the following speakers were
Brenda Onatade – Her Patient Carer Race Equality involvement and update
Samantha Hosten – Importance of Black History month mental health
Lauren Obie – Blacks MindS Matter UK
Lily and Jemma – Maudsley NHS Patient Research ambassadors
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.
Black Thrive is a partnership between communities, statutory bodies, voluntary organisations and the private sector. We work together to reduce the inequalities and injustices experienced by Black people in Lambeth.
According to the GSTC “One to Many” report, more than 1 in 5 residents in Lambeth live with at least one long-term condition. Over 19,000 live with multiple long-term conditions (three or more). Even though Black communities make up 18% of Lambeth’s adult population, they account for 27% of people with multiple long-term conditions. Furthermore,
in Lambeth, Black residents are four times more likely to be unemployed than white residents. When they are employed, they are disproportionately engaged in insecure, low-paid and dangerous work, which harms mental and physical health. In addition, Black people can face racism and discrimination in the workplace, which negatively impacts mental well-being.
Therefore, we know that people of African and African Caribbean descent in Lambeth are more likely to be unemployed and more likely to have poor health. One of the key drivers of these inequalities is structural racism and the fact that our current healthcare and employment systems prevent Black people from thriving.
As a result, in collaboration with Guy’s and St. Thomas’ Charity (GSTC), Black Thrive’s Employment Project is developing community-led solutions for improving employment outcomes for Black people with long-term conditions. Our goal is to ensure that Black people in Lambeth with long-term conditions are as likely to be in and sustain, meaningful employment as equivalent white people.
To do this, Black Thrive is partnering with community members, statutory bodies and local organisations to achieve justice for the Black community through radical systems change. In September 2020, we launched our £300,000 grant fund to pilot projects that consider the lived experience of Black people with long-term conditions and have the potential to create systemic change. Projects should test and pilot new ideas that have the potential to shift the dial on employment outcomes and improve the evidence base around what works for Black people in Lambeth with long-term conditions.
The fund was managed and distributed by our Employment Working Group; a group of local Black residents with lived experience of managing one or multiple long-term conditions. We believe that prioritising community-power and lived experience is a radical way of funding new and exciting initiatives that may be overlooked by the traditional system. After receiving 84 applications, the Employment Working Group decided to fund 8 projects – the vast majority of which are led by Black and disabled people.
Funded projects include a radical self-care and wellness to work programme, the creation of a network of Black social entrepreneurs, supporting those recovering from mental illness and substance addiction back into employment through dog day-care traineeships and empowering Black people to develop employability skills through social action. To read more about all 8 projects please visit: https://employment.blackthrive.org.uk/our-grantees/
As the projects begin recruiting participants, it is important we ensure that the opportunities available reach the most marginalised people. This is a form of systems change in itself, as it will allow those people who fall outside of traditional referral pathways for services to still access support.
Given that carers have an intimate and trusting relationship with their loved ones based on an acute understanding of their needs, interests and goals, they are a vital network which cannot be overlooked! We strongly encourage all Lambeth-based Black carers to review the projects on offer, share them widely within your networks and follow the sign-up process if you, or someone you know, is interested in taking part.
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”.
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 theMarie 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.
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.
It has been a busy month for July and I have been meaning to update on my Lewisham BAME Mental Health carers forum for June. I have to honestly say I have finally gotten around to do this, even though the July BAME forum is tomorrow. Lets first give a quick introduction of this forum.
I can feel it can be difficult for patients to know about what mental health services are in place in a certain area, it can be even more difficult for carer’s to get an idea what is out there, especially if there are forms of mental health stigma. but this move in BAME community, sometimes the BAME community can go through a hard time and that does increase mental health issues as opposed and also problems with services that can be seen that we need to make made aware of and how we can work together.
With these issues it helps to have a forum that allows engagement from services. That’s because services change often, especially health services, mental health services and Local authority services. The forum also allows a chance for carers to get some forms of education to learn from those services.
For the June forum we had my MP Janet Daby attend, along with Josephine Ocloo who is a Researcher, and also ‘Patients for Patient Safety Champion and also on the National Patient Safety Steering Committee for NHS England. We were also joined by Donna Hayward who is SLaM’s Service Director for Lewisham mental health services. We also had Sophie from Healthwatch Lewisham who is the patient experience officer, talked a bit about her role as in to listen to residents on their views about health and social care.
MP Janet Daby
Janet thanked us for the invite to the forum so that she can update members and hear from BAME carer members. She was happy to see lots of familiar faces on the forum. Plus she felt that the forum was important for carers from the BAME background to be supported through engagement from services.
Janet certainly agreed that there can be stigma in the BAME community when it comes to mental health sometimes there is an embarrassment or shame around stigma or sometimes even people don’t really recognize or or get a sense of how they will and and can be supported. Janet Daby updated the forum to also speak about the Coronavirus where Lewisham has provided any support. Janet mentioned that she recently met with the chairman of SLaM sir Norman lamb and is are going to have more ongoing conversations in futher meetings.
Janet feels there’s so many things that she has spoken to him about and but the main one that I spoke to about was the lack of of professionals in engagement with family members where somebody has a mental health problem. There is an issue regarding the lack of empowerment for family members to be involved with the care and the decisions of their loved ones where they’ve got mental health problems. She feels health professionals should be embracing that relationship, rather than being surprised it exists, and also rather than making decisions without having those conversations with those family members. There needs to be more training on getting health professionals to engage well.
She has lots of concerns around where people live in overcrowded situations or where people live in unsuitable conditions and how that will exacerbate the feelings of them being isolated, just as carers are isolated during the coronvirus infections. With all this problems it is no wonder that mental health issues are incresing. Janet mentioned she was also concerned how young people were coping during this difficult period. She felt hard for those people who are unable grieve for their loved ones when they haven’t been able to attend funerals or do their usual goodbyes.
She feels it is really important that when the government is looking at this and she will do her hardest to increase the voices of the BAME communities being heard. Especially in accessing the right type of therapeutic support. Janet mentioned about the £5000 application funding scheme, which was also advertised off her Twitter account where carer members asked her specific questions.
After a while, we got several excellent questions from the carer forum. Where one carer member asked about if the government understands the difference between a worker and an unpaid carer. He felt the reason why he had to ask was because he never hears anything from the government to say what they’re going to do for the unpaid carers who are suffering in silence at the moment. Janet did agree more could be done to raise awareness to the government about carer identification.
This is not only a problem with carer identification but also BAME as there has been so many reviews including the McGregory review, the Windrush scandal review and others. Janet queried when will the government get on and work on the recommendations of these reviews. She felt that we do not need people’s sweet words or their facial expressions of concern that they really care about the community, because if they cared about our community, then they will put these recommendations in place. She feels there is a lack of BAME people being at certain reviews and it is so important BAME communities keep telling their stories, but with these recommendations especially from MP David Lammy and others hardly any get passed.
Going back to my Lewisham BAME forum, I am open for patients and service users attend and we got a good question from a service user who does peer support on some of SLaM wards. She feels that patients get a bad deal when it comes to their ward rounds. A good example is there can be so many people at those ward rounds and that there is a misrepresentation of that service user needs. There is a lack of patient advocates to be there as a voice to represent them and not for other people to tell them.
Another carer talked about her mother from a different culture and background and felt that while her mother is in hospital, there is some difficultly visiting her. Some other carer also from a BAME background spoke about the reasons why she feels the BAME community gets so many mental health problems she was also unhappy about the levels of BAME community at the front line contracting COVID-19.
Janet responded to the forums queries and questions and agreeing that the BAME community should not be pigeonholed and stigmatized with labels. Plus the problems of PPE not fitting BAME staff and the problems of poverty, which can lead to lower immunities. She feels BAME communities need more access to education, housing and especially health. She also feels there needs to be prevention of the police racial profiling of our community and that there is also a problem with the rise of the far right in the UK.
One of the service user members of the forum stated that she was at another meeting yesterday and felt that we need to stop thinking as a separate unit. We need to think of us as a big community, and this is some of the things she find as a service user as well, is that there’s that separation of hospital care and community care. She would like to see those two come together as a whole and that the care that you can get to can be continuous and not separated.
Dr Josephine Ocloo
We next had Josephine Ocloo speak about her research and then Donna Hayward from SLaM give the forum members service updates. Donna felt it would be appropriate to talk more on BAME cultural awareness. Donna mentioned that although SLaM knows that a lot of their patients, carers and staff. She feels like there could be more discussions on what what it’s like to be black, or from a BAME background.
She want people’s experience of mental health to be different, but Doona feels unless we have the conversation about diversity in a very open way, SLaM may be in a position of being defensive and still feels we are not getting it right for our community.
There is a problem in the NHS, that we revise strategies and that we talk about research, where lots of things that the forum raised she recognised. Donna mentioned she recently had a meeting with a commissioner who said that SLaM needed to do a research project. Donna felt that we do not need to do a research project. What SLaM needs is to know what the issues people tell us and how those issues start. We get don’t don’t spend 10 grand doing a research project and spending 10 grand putting something right.
Mental health tends to be thought of as it shouldn’t be. Mental health is across all SLaM’s services and sometimes SLaM don’t always get it right. Donna mentioned that she is one of those people who’s very vocal about that. She feels mental health is in our community across our community and across our services, including our GPS, including social care, including education
This is the update for June’s Lewisham BAME MH Carers forum
Thanks for dropping by my website. This blog is usually aimed at unpaid carers and promoting mental health awareness. There will be times I will provide updates from the carer forums I host around South London, but due to limited resources, I just cannot always update.
Going off topic, at the time of this particular post, it is the 28th of Monday October 2019. Black History Month is soon drawing to a close, but there are still plenty of events going on around the UK. I have just participated at the St Andrews Black History conference, which was the first of its kind for the Charity. I am bound to blog a bit more about that when I get some time, however the conference opened my eyes to the challenges of BAME nurses and mental health professionals.
Still, I thought that this is not the time to focus on mental health professionals on this post, I want to jot down some thoughts about BAME unpaid carers. I know one of my forums is focuses on BAME families and carers, but to understand why I decided to set up that forum in Lewisham, it would be a good idea to carry on reading.
The struggle of BAME Carers
As an unpaid carer trying to work out my roles and duties. I felt my identity as a carer/BAME needs some highlighting. Even if it seems complex to others on being a Mental Health BAME unpaid carer. Such an identity shows the complexity and issues that I would need to face. Being an unpaid carer working towards being identified can often be a struggle, especially when caring during a crisis, but unfortunately carrying out a role and ones own identity can make matters tricky.
It is a sad fact that BAME carers tend not to engage much with services. There seems to be some form of distrust as to why their loved one is struggling with health services, especially mental health services. I see there is much change going on and for the better, I notice so many people trying very hard to change things for the better and I thank them for this, but there is still some ways to go.
The issue with BAME carers regarding mental health services is that they can be tired of the same journey. Having to challenge unconscious bias or wondering if they are being judged on their actions or on identity. Sometimes BAME families and carers feel they are being pushed into labelled boxes as engagement policies strive to identify BAME issues.
It does not help that their are also social challenges as well as health challenges within the BAME community, which can make life even harder for BAME families and carers.
If all the above was not tough enough, then BAME groups sometimes suffer from getting specific tailored support due to cultural misconceptions, language difficulties, stigma related issues and unfortunately discrimination.
So with all the above demanding change and attention, what can a BAME carer like myself do?
The power of BAME Carers
The first thing is to raise awareness of these experiences. Ever heard of the quote “A problem identified is half solved?”. Well I am not sure if the quote was said in this many, but it speaks volumes. BAME carers need to unfortunately help in raising awareness, especially of their experiences. BAME carers ought to try and network with other carers, just as some way to reduce the isolation. The more a person becomes isolated, the more they lack that vital support.
Unpaid carers often miss out on social interaction, specifically if the carer is supporting someone with serious mental health illness. It is so important carers recognise their isolation and take steps to counter the loneliness. It is ok to feel lonely, but to stay lonely is not ok.
As a carer, so much usually goes on in my mind, there probably is not a day that I do not replay my failings and difficult experiences in my head. Perhaps I am too hard on myself, but at least I am slightly aware that I need that support. If you are a BAME carer, do yourself a favour and network. Phone a friend even if it is just to be heard.
For black history month, I made it my mission to take part in events that celebrate the diversity of the community. As a BAME carer, if you can get out there and speak about your experiences, it can shed more light on the subject of identity. Sometimes it is just on learning about your past and the culture you came from, sometimes we are more than what we do.
You deserve to have your voice and relate to the community, even if its for just that month. Being part of something need not be a challenge, but unfortunately BAME carers need to find somewhere that supports their voice and urges them to be part of the health system. As with BAME carers, we should be encouraged to be aware and celebrate what makes us different and feeling no shame or stigma about it. Deep down thought as carers we are all alike as we experience the same emotion all other unpaid carers go through. Those would be the fear that illness is taking it toll, the joy that we are supporting those we care about and so on.
There is nothing wrong in being proud as a carer, its not an easy role and depending on the MH or health challenges, the struggle of caring should be counted. It is not your fault that the person has become unwell, you are trying the best you can, especially if you are a young carer.
As BAME carers, even though its great to have Black History month boost, celebrate and educate our achievements. It should also be used as a welcoming of all who want to celebrate with us. As carers our nature is to be inclusive of others and we also require others to emulate what we are trying to do, especially healthcare. As carers we wish to see inclusive healthcare celebrating diversity and being proud it if, despite the challenges being asked.
From what I have learnt from Black History month, which can help in regards to BAME carers is that we wish to avoid being forgotten. There is so much more to be learnt from Black History month, but as a carer the fear is that we could be forgotten as those we care about slip into declining health. It is an awful fearful experience to struggle alone at times and it really helps if someone out there acknowledges our struggle.
Thank you for reading and have a happy Black History Month.
Welcome to another update from an unpaid carer who is involved in their local mental health trust and communities. I often try and engage with communities as much as possible, be it through running carer strategy groups, giving my views and engaging with events.
For the August Lewisham BAME Mental Health Carers forum, we focused on Patient Participation Groups and also updates from the South London and Maudsley Inpatient Social worker over at Lewisham hospital.
The Lewisham Black Asian Minority Ethnic Carers group is one of the 4 groups that not only focuses on carers, but makes a distinction on their background, culture and ethnicity.
BAME groups are more likely to experience stigma and distress due to cultural interpretations and systems set up or designed that does not take into account BAME communities. Lewisham is certainly one of the most diverse London boroughs around so it really helps that communities get together to discuss and educate each other on issues regarding health.
The Lewisham BAME carers forums also accommodates those using services, but there still needs to be a drive to engage with more BAME carers who are very uncertain of their role and perhaps lack peer support and identity.
The carers forum runs from Lewisham, Bromley and Greenwich Mind under the Community Wellbeing umbrella.
Lewisham Community Wellbeing is delivered in partnership with several other local charities and public sector organisations. We have been very lucky to get the support of Mind who probably have a lot on as it is and there will be some very exciting community projects coming up soon.
We have around 45 to 50 doctor’s practices in Lewisham and I was fortunate enough to have the chair of one of the largest doctors practice in Lewisham. Alexandra Camies does an immense amount of work engaging with patients for the doctors practice she helps with. The doctors surgery is also a member of the National Association Of Patient Participation or N.A.P.P. I have always said to carers and patients that doctors are usually the gatekeeper to services, if you feel your doctors practice could do more for you or the community, perhaps look into how their Patient Participation group works.
So what is a PPG anyway? What do they do?
PPGs offer patients an opportunity to be involved with and support their local General Practice. For the South Lewisham Health Centre. Here are some of the following things that PPG involves.
Patients wishing to join must, in order to comply with General Data Protection Regulation (GDPR), complete an application form.
They currently have a committee of 8 patients, including aChair and Secretary.Committee members are provided with written details of their roles, responsibilities and key relationships.
They have the assistance of the surgery Patient Liaison Officer, who attends each meeting and provides us with any help needed at the surgery.
They have a GP representative (usually a partner), and the Patient Services Manager that attends the meeting.
All members are invited to general meeting, held quarterly, and asked if they have any agenda items to put forward for discussion.
Members that are unable to attend are able to have a virtual input via email. Virtual members are sent copies of the minutes, which are also placed on the practice web site for all to view.
Committee members take on a little more responsibility at the South Lewisham PPG, taking a part in organising events or projects, or helping with various admin tasks. Committee meetings take place as and when needed.
Members may be being asked to help out for such things as events.
Take note not all doctor’s surgeries are alike. Some do not have the resources to have a PPG, but it does not stop patients from helping set one up. I explained to the forum that your doctors surgery is only as good as the community that cares for it and uses it.
How can a success for Patient participation group operate?
The PPG should try monitor progress against objectives
Publicise their successes
Involve people and not that would mean patients, especially those whose voice is not often heard.
Learn from other groups, usually other PPGs hence the PPG Network.
Build on and work with their network of health and wellbeing groups and organisations.
Expand activity where possible
Make sure to review our objectives regularly
There are only a very small part of what a PPG doctors surgery should work towards. Alex gave the group an excellent presentation and we both learnt and picked up ideas from each other. I reminded the group that they could start their own projects and inquire about their local doctors patient participation group.
If you want more information about South Lewisham GP Practice, check out their website below.
Next up was Errol Chambers who is the social work for the Lewisham Hospital Ladywell unit. It was great that SLaM engages with the BAME forum, because I have always stressed the the forum represents empowerment when we form as a group. If SLaM staff recognise this, then they can support us, although we try hard not to be antagonistic. Errol gave us a choice on what information the group would want be it on benefits or on how the Ladywell unit is operating currently. The group wanted updates on the ladywell unit and we discussed changes and progress regarding patients experience of the mental health unit.
Lewisham CCG was mentioned quite a lot as they invest in the services and are keen to see if the hospital is working to the best of its abilities. Many members pressed for a relationship with the units, but also felt that staff development must be key as a good quality service. This is mainly down to how staff engage with patients and their carers.
At the end of the forum, I updated on the planning meeting for Lewisham CCG’s stakeholder event and also for Lewisham’s Carers conference requested by my MP Janet Daby who is a carer herself. I also pointed out that the Lewisham HR lead will be at the BAME forum for September. I have asked we are updated on the following.
BME staff engagement – What else is happening to engage with BAME community.
Plus small updates on the following.
SLaM’s Health and well-being strategy
SLaM’s Talent management programme
The South London Partnership collaboration (South west london & St georges, South London & Maudsley and Oxleas NHS Trust)
Plus an update on whats been done for staff to tackle.
Equal opportunity for career progression
Bullying & harassment
I guess as a carer, I do not ask for much. Still, I mentioned to the group…knowledge is power.
That is the August update for the Lewisham BAME MH carers forum.