Welcome to the first January Lewisham BAME carer forum for 2021. The BAME carer forum is one of the 6 carer forums I run once a month. The carer forum runs online to adhere to covid-19 restrictions and allows members to attend a lot more easily.
The BAME Mental Health carer forum is aimed at BAME carers who are caring for someone with a mental illness, especially for someone using the services of South London & Maudsley, although I am not super strict who attends the forum since carers from other forums and boroughs often attend.
On the January agenda were the following.
NHS England presenting on their National Patient Carer Race Equality Framework (PCREF)
SLaM presenting on their Local drives for PCREF
SLaM older adults diversity drive
We were joined by Staff from Oxleas as well as Manchester NHS Trust who are also seeking to engage and improve services for the BAME community.
A representative from Public Health Lewisham also attended as well as carers, black mental health activists and researchers.
NHS England & Improvement presents PCREF
Husnara Malik the Programme Manager for National Mental Health Team presented on “Improving Black, Asian and minority ethnic community experiences of mental health services”.
She spoke about the Advancing Mental Health Equalities Strategy which outlines the short and longer-term actions NHS England and NHS Improvement, which will advance equalities in access, experience and outcomes in mental health services. The Strategy builds on the 8 urgent actions health systems must take to advance equalities in the round, referenced in the Phase 3 COVID-19 response letter.
The Key objectives of the Advancing Mental Health Equality Strategy are
Developing the Patient and Carers Race Equality Framework (PCREF).
Investing in advancing mental health equalities via transformation/pilot sites.
Sharing evidence where it emerges.
Developing a Provider Collaboratives impact framework.
Improving the quality and flow of data to national NHS datasets.
Using headline measures of mental health equality to monitor change over time, at both national and local level.
Supporting the development of a representative workforce at all levels, equipped with the skills and knowledge to advance mental health equalities.
The aim of the PCREF is to improve the way organisations deliver mental health services so the experience of Black, Asian, Minority Ethnic patients and carers improves; to the end of making services more accessible, and to improve the health outcomes for Black, Asian, Minority Ethnic patient and carers.
But What is it?
The PCREF is an organisational competency framework that values the voices of racialised communities’ lived experience to help service improvement by providing more culturally appropriate care. It is a practical tool which helps organisations to understand what steps it can take to achieve practical improvements.
Components of the PCREF
Part 1: Statutory and Regulatory Obligations
An outline of the core statutory and regulatory obligations the PCREF will support Trusts to fulfil, including (but not limited to): Human Rights Act 1998 Equality Act 2010 Workforce Race Equality Standard (WRES) Use of Force Act 2018 (The Mental Health Units) CQC Inspection Criteria well led
Part 2: Organisational Competencies
Core ‘competencies’ culturally-responsive services should demonstrate (see next slide) Guidance on how to identify and additional, local competencies Advice and support on how to build these competencies
Part 3: Assessment and Feedback Tool
A Patient and Carer Feedback Mechanism, to be supported by a benchmarking tool, which tracks progress over time
So far the Steering group formed, consisting of experts by experience and 4 PCREF Pilot Trust partners – Birmingham and Solihull, Greater Manchester, East London and South London and Maudsley Trust.
They Held deep-dives into differential BAME experiences within mental health service pathways
Building on the above, and the Mental Health Act review, identified 10 potential organisational competencies
Started engaging with patients and carers on these potential competencies, with further engagement in the pipeline
How can people with lived experiences including volunteers get more involved with mental health services to help improve the outcomes and experiences for BAME communities?
NHSE&I currently have a number of people with lived experience as patients/carers co-developing the PCREF. NHSE&I also believe it will be critical for the PCREF to be developed in partnership with local communities, with lived experience informing its development and ongoing evaluation. They expect ‘co-production’ will be one of the core competencies of the PCREF itself. This means we would expect Trusts to have clear and transparent ways of working with diverse communities to inform service improvements, and how they are evaluated
NHSE&I aim to achieve this by holding more engagement with specific groups i.e. older people, people with a disability and other groups in the development process (accounting for intersectionality). In addition, they will be rolling out a more targeted questionnaire on the competencies in the PCREF Pilot sites early in 2021. Our Pilot sites will be focusing on more ‘in-reach’ models of engagement like targeted workshops and focus-groups as part of this
Zoe Reed SLaM Non-Executive from the board presents
Zoe explained the key principles for developing reponse to the fact that we know that many black service users and carers don’t get equal access to mental health services. So the principles SLaM are using are the joint leadership SLaM and the BAME community between each program on PCREF that they were building towards their database
Zoe mentioned their will be joint chairs at every level between the community and SLaM on the new PCREF initative. So this is the program that SLaM are working towards at the beginning of phase one for this year. SLaM are now is really looking at the data and trying to get an understanding about what the data is, and how that might lead them to think where are the gaps for black people using their mental health services?
Some members were interested in attending the community PCREF events hosted by SLaM and the BAME community, so there were a few questions regarding this. Other question on if SLaM were going to involve the carer centres where BAME carers also use their services.
SLaM Older Adult services Presents
This was a shorter presentation on how Older Adult services were also looking to engage with the BAME community on memory services. There has been a lot of engagement with the organisation Black Thrive in Lambeth and Southwark, but there needs to be a way to engage in Lewisham.
This concludes the January BAME carer forum for 2021
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 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
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.
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.
Welcome to the July update of the Lewisham BAME mental health carer forum. I’ve been doing this forum for many years now. As a reminder I run carer forums aimed at carers who are looking after those with mental health needs challenges or mental illness.
These forums are just a way for carers and families to get educated in regards to mental health services, or local author services. This forum is specifically aimed at those from the BAME community, the other carer forum I do is just more general mental health carers.
The BAM community have two specific set of issues Hence, the patients may end up using community servies, you know, high secure mental services. So that was the aim to sort of get them to have have an idea about the services created them, see what’s working see what isn’t working. For the July Lewisham BAME ME carer forum we have the Care Quality Comission (CQC) attending, plus regular carer members, along with Oxleas’s Community Development Service Manager and BAME Staff Network Chair. We also had in attendance SLaM’s peer support project lead and Damien Larkin who is a nurse who works at South London & Maudsley developing BETH the online patient health recording system.
The forum was also joined by Bromley, Lewisham and Greenwich mind Peer Project lead who offers support coaching up to £250 funding or people to set up peer support groups in their community. This is to help peers around mental health and well being, especially during this period of lockdown, but also beyond supporting people within the community around their well being and mental health.
Lastly the forum was also joined by Abby who works for lesbian refugee migrant network. They are one of the partners in the community well being service she is also the Community Engagement Manager delivering culturally mental health services.
Although the forum covers mainly Lewisham, we welcomed a member interested in BAME mental health groups and she is a Mental Health well being practitioner who also provides low level mental health support for children/young people under the ages of 25, vulnerable people going back into employment and business startups wanting mental health support.
To kick off the forum the CQC spoke about their role and answered questions. I invited the CQC down because I wanted carers and patients to develop more of a relationship with the CQC rather than the CQC engaging with users of services when inspections of services arises.
Natalie Austin Parsons who works at the CQC meaning Care Quality Commission as an inspection manager spoke first as 2 CQC staff were present. Natalie was handed the role of engaging the forum because the previous CQC staff member Emma Mcfarlene only works in the directorate of adult social care, so they would inspect residential services for MH/LD/autism as well as nursing and residential homes and domiciliary care agencies. Emma suggested Natalie engage with us since Natalie works in the hospitals directorate who inspect in-patient and outpatient mental health services
Natalie was also joined by Susan Shamash who I have known for many year, were Susan attended my Lambeth Mental Health carers forum when they last inspected South London & Maudsley.
Natalie was kind enough to answer the previous queries I sent her before presenting to the forum.
The first question was on how does how does the CDC engage with slam? And how does it inspect and slam so
Basically they have a named inspector within the London mental health team. Plus they have a named inspection manager within the same team, that being herself. So we meet with senior staff within the trust regularly throughout the year, every two to three months. Face to face it was before COVID they generally would have those meetings at about 2 and or 1 and a half hours. The CQC would talk about previous action plans. So when the CQC came last time, they asked SLaM to improve this.
The CQC also get any kind of information or intelligence from absolutely anyone in the public who contacted them and if the CQC are concerned they will contact them immediately over email or phone.
The CQC use such information to see what’s going well, what are SLaM celebrating at the moment? What are SLaM working on that they they feel really proud of. And that’s really important to remember that there’s lots of things that could be improved in every trust, but there are also things that they’re doing a great and that’s how often the CQC tend to meet them face to face.
The CQC usually have contact with SLaM’s the director of nursing and director of quality. It’s only half an hour meeting every those every two weeks, but there’s a lot of turning in for information.
The CQC also have focus groups throughout the year if there particular errors or teams that the CQC haven’t heard from them for a while, or they want to hear what their improvements are while they’re doing well. The CQC will invite them to attend, but it can be really tricky, as Mental Health staff are really busy and realistically, who wants to go to a CQC focus group sometimes that’s not everyone’s first choice activity.
There will be some changes in how the CQC inspects SLaM due to a change in methodology. The CQC used to do a lot of engagement just prior to an inspection period, but now we’re looking at trying to spread that across the year rather than all in one concentrated amount.
The CQC respond to the first set of questions from Carer members
The CQC gave the forum space to question them about their first response to my query. A carer member noticed a criteria that caused problems due to getting access to mental health services. The carer felt it meant that less people are getting services. Therefore, you could argue you’re going to get a better output because you’re dealing with a small amount of people getting access via MH service from their GP, which could lead to a false economy of patients quality of service within the mental health trust.
The CQC acknowledged the concern and stated it was a really important point. The CQC are always open and welcoming to any ideas. on how do you think that the CQC could do to help services improve.
The carer suggested sampling on how many people that got rejected for mental health services against those that was accepted. So to see within those within that range who they are, and then do a comparison, and see if there’s any within those samples of rejection and actually had similar cases.
The CQC noted that it was outside of what they would do for an inspection, however they are to happy to feed that back into their colleagues that go into GPS because the ones at this forum inspect mental health trusts only. This was a very important development as the forum is examining how GPs engage with mental health carers, especially if GPs are the first port of call for patients or carers during a mental health crisis.
Another question from a carer was about when the CQC come to South London & Maudsley how do they look for equality and diversity regarding carers? Because the carer has never seen you when the CQC show that in their report. The carer wanted to know if there is anything regarding carers, The carer also asked about queried that there’s never anything regarding carers or support on it. So how do you they show the quality regarding carers. This question was interesting since a mental health carer policy the Triangle of Care wanted the CQC to acredit such inspections regarding services to carers.
Again the CQC admitted that it doesn’t often come through in the reports very much even in the narrative. This is not only in slam but all the other mental health trusts, which the CQC will go away and report that to their team. The carer was also concerned about measurements of stigma and concluded that when it comes to mental health people have got stigma, especially the BAME community. If the BAME community can’t see anything from the CQCs report then they feel that you’re not interested. How can you be supporting us? If you’re not showing what you’re doing for us?
The third question from another carer member was a suggestion mentioning with regards to doing some measurements. Could the CQC not start with an existing data? Are they looking at historic data or working from the bottom as a starting point?
The CQC responded that this is something that they would do. The way they probably go about this is to have the mental health trust to do this. The CQC would ask the trust if they have the data? And if they don’t have the data, why do they not have the data? How do they analyze the data? And what are they doing with it? Have they made actions realizing that they could or couldn’t be doing something better? So certainly there’s work that the trust will have data that they can use to analyze this, but there may well be other areas that they could collect it.
The CQC present on my second query
The CQC responded to the forums questions and moved on the my second query I raised with them before they engaged with my BAME carer forum. The second query was on “How does the CQC engage with patients and carers during an inspection of a trust?”
The CQC presented that as standard when they come and visit a trust as large as slam, they divide services that it provides into something that the CQC would call core services. So examples would be adult inpatient wards. And slam have a number of those adult community mental health services, children, community mental health services, and substance misuse services if a trust provided. So those are examples would be wide across borders, and across all trust, and then the CQC write a final report for the core services.
There can be some difficulty if you are wanting to find out about a specific Ward or a specific team, and it can get quite lost in a report sometimes. if the CQC finds one Ward, or team that is doing particularly well or bad, then they will write about that in the report. But generally, across the trust this team, this type of service is doing well in this area or it could be improved in this area and then if the CQC need an improvement, they put it across the whole Trust.
Later on they inspect the trust about that improvement and in the report, the CQC have the five questions. So is it safe? Is it effective? Is it caring? Is it responsive and is it well led.
Experts by Experience
When the CQC come in with a team of inspectors, they are joined by professional advisors, who are currently working in that in that type of service in another range of interest. The CQC come in with experts by experience who have used that type of service themselves. The CQC do have people who are carers and who come in as the expert by experience as someone who is cared for a loved one with a mental health difficulty. Unfortunately the CQC don’t have many carers, the CQC have more people who have personal experience and the CQC would always welcome many more carriers to join that process as an expert by experience.
When the CQC come in they interview staff, they look at case records, they look at the environment, they interview service users. And the CQC do try to interview carers.
The CQC admitted that they think this is where they could do a lot better. The CQC request the contact details and the consent to be contacted by them through the trust, which the CQC think can be one of the barriers, they can’t just request a list of everyone’s names connected to services and then call them out of the blue. And so so that makes it a bit a bit trickier. Obviously, not everyone wants to speak to the CQC as well. Not everyone knows who the CQC are what they do. And that that again can be a barrier. The CQC collect all of that evidence and they make a judgement about specific things, you know, medicines appropriate training. So, that’s kind of an overview of how they do an inspection.
Inspection during COVID
Because of the COVID situation, the CQC are adapting the way they work at the moment. So they actually will give them longer time to spend talking to carers and people using services by telephone or maybe conferencing software.
The CQC then paused the presentation to give carer members a chance to raise questions on that subject. I won’t go into too much details about the questions, but they were very good regarding
1. How the CQC can gather patients and carers to hear abour services.
2. The problem of BAME carers worried about COVID-19 and how this will be captured in reports
3. More questions regarding sampling and data.
The CQC then presented on how well SLaM had performed during the last inspection and also responded on how well Oxleas has performed since Oxleas usually attend this BAME forum at times.
SLaM Peer Support lead presents
Next up we have the Peer support lead for the trust present on her role. Her focus at the moment is around making sure that we get more peer workers, working people, workers or people who have lived experience of mental health. And they are trying to make sure that we get peer workers working in all different departments of SLaM. This is so they can offer the lived experience and support people in navigating through the mental health service and navigating their way through recovery.
SLaM have is what she mentions is a values based measurement, which means that they train peer workers to work to a set of values. Those values are the value of lived experience, developing safe and trusting relationships and strength based approach, anti racist, anti oppressive practice.
Training Peer workers
The peer lead continued that they train people and they do an eight week accredited training. They want to train people who have lived experience of mental health and who have used services. It’s really important to say that just because someone’s got lived experience, that doesn’t mean that they’re going to be good peer workers, you need experience to be a peer worker, and for having lived experience doesn’t make you a worker looking for loads of skills and qualities as well including communication, kindness, and the team working at able to support people with certain kind of recovery.
So what SLaM are looking at is a quite a wide skill set, so SLaM train people for eight weeks and then after that, they are working with teams to see where SLaM can have vacancies. At the moment, a lot of her work is trying to to transform their vacancies into pure workarounds. So maybe they’ve got a vacancy for a support worker, and see if we can transfer them to that team.
Carer members raise queries
There was a large number of questions from carer members one was on what support was given to Peer workers in such a demanding role. This being clinical supervision or regular support, support from line managers, etc, because there may be the sharing of quite challenging information
The peer support lead responded that peers get the same support as any member of staff and will have regular supervision with a line manager. Access, reflective practice, team meetings, whatever it is anyone else can do, but will also be put in regular supervisions that will be facilitated by someone who’s had experience of using their lived experience in the workplace, and which SLaM will ask all our new workers to do.
I also raised a query on why there is either a lack of carer peer supports or none at all, especially if service users get the majority of peer workers, peer befrienders, peer supporters. Carers are also using services, so where are all the peers?
It was noted by the peer lead that it has to be an evidence based initiative. So we need to have the evidence before they can start rolling it out. And at the moment, SLaM has evidence in regard to people with lived experience. So we know there’s loads of informal peer support that goes on for carers and meetings like this, but also just people getting to know one another. In her view, there probably will be. And I can’t imagine why wouldn’t work, with peers is supporting one another. Unfortunately at the moment it doesn’t look like SLaM going to follow that path.
Oxleas responded that they have a different view of carer peer workers than SLaM. Oxleas also have lived experienced practitioners who work in the trust and they have trained, experienced practitioners who have been carers, so they have broadened it so that includes anyone and the way that the roles and then people are employed as members of staff. their lived experience is an added extra. So you might be working in the board or in the health care system, but you are there with your lived experience, whether you’re a carer or a service user, and then that is the extra that you add to the role. Oxleas disagreed that carers were seperated from peer evidence based because how can NHS staff even begin to relate to carers?
There was a big discussion on the nature of peer support and on the peer support projects especially on the peer project regarding peer workers being placed in the Emergency department of Guys and St Thomas’s hospital.
There was also a very good question from another carer member regarding peer support and someone in a crisis, I think it went like this. As in terms of peer support, it’s relatively more needed when, when there’s a crisis, when a patient presents to an acute Ward, and this may be their first very first experience of the loved one, and experiencing mental health, rightly or wrongly, whatever the case may be, that is where that peer supporter is needed.
Plus we had several questions regarding if the involvement register was some form of peer support or if peer support was utilised across the involvement register.
The peer support lead did note that there is a problem on the way that the service works and particularly mental health services is that it’s not a very holistic approach. So one of the questions will be that the services not providing care for carers because that’s not their role. The MH services role is to provide care for service users. The problem is this, we know that if you support caregivers, then that’s going to have a beneficial impact on everyone including the service users. She admitted there needs to be a continued challenging of culture on how peer support works. It was mentioned to approach researchers regarding peer support at Kings college, but the Institute of Psychiatry, Psychology and Neuroscience was also mentioned.
The discussion went on for some time, but I think I have made this a very long blog post. This is the July’s update for the Lewisham BAME MH carers 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
Welcome to the May update of my Lewisham BAME mental health carers forum. This is one of my 5 carer groups that focuses on the experiences of BAME carers and sometimes BAME groups suffering mental ill health. I usually run this forum from the Lewisham Branch of Bromley, Lewisham & Greenwich MIND. Due to CoronaVirus I have moved the forum online via ZOOM.
As a reminder the forum is not a support group, but a way to connect to health providers in the community. The forums focus is of course on mental health services so our local mental health trust (South London and Maudsley) engages with BAME families and carers at the forum.
Welcome to the April update of the Lewisham BAME Mental Health Carers forum. This is one of the four forums that I chair in South London. Out of the four forums, this group focuses on BAME carer developments in Health and social care. The group has been going since 3 years or so. Due to the COVID-19 outbreak, I am running all forums via my own ZOOM account.
The invited speakers for April was Shilpa Ross who is a senior researcher at the Kings Fund policy team that works on a range of health and social care research programmes. Shilpa was invited to the forum to speak about her latest research that not enough progress has been made to address discrimination against black, Asian and minority ethnic (BAME) staff in the NHS.
Welcome to the February update of the Lewisham BAME Mental Health carers forum. The forum is aimed at black Afo-Caribbean, Asian and other minorities carers in the borough of Lewisham, however I am happy for other carers in surrounding boroughs to attend. The forum is run from Bromley, Lewisham and Greenwich Mind centre under the arm of Community Wellbeing.
The forum is more educational and allows carers to discuss with mental health service providers any queries about services. A high majority of the BAME community use mental health services and some of the issues are specific regarding race, culture and even language. The issues are complex and deep, but discussions, forming relationships, education and working together is the way forward.
Welcome to the January update of the Lewisham BAME Mental Health Carer forum. This is one of the 4 carer forums I use to help engagement between unpaid carers and mental health or even health services. I feel if patients and their families are at the heart of health services, then there should be some form of engagement, involvement and influence. The forum is run from one of the Bromley, Lewisham and Greenwich MIND offices with support from Community wellbeing.