Category Archives: Lewisham BME Mental Health Carers Forum

Bromley, Greenwich & Lewisham BAME Carer Forum July 2021

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

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

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

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

Lola Jaye Presents

Lola started her talk about how those from ethnic backgrounds experiences racism in everyday life, she pointed out that a lot of people at the carers forum may remember last year, where globally the Black Lives Matter movement began a lot of traction, plus several incidents that happened in the final or the Euro 2020 football match.

Many things have pushed the importance of diversity to the forefront including the impact of COVID-19 on ethnic groups, plus how it forced many to be online at work. Lola talked about the impact of racial trauma and it’s affects on mental health. Lola gave us several examples e.g. How many times have we heard a racist joke? How many times we seen racial slurs on the walls or been a victim of overt or even covert racism or racial profiling, sometimes even unconcious bias has an impact on diverse communities.

Lola mentioned as a psychotherapist she has noted many of her clients experiencing issues and a feeling of powerlessness because of what they have to be able to live with and these are things that cannot be ignored especially if health and social services have to takle the problems. The community must be a part of it.

Lola moved on to querying “what is self worth” to forum members. Lola raised how the media has bombared people with messages that challenges their self worth, especially young black people. Certain things in the media has lead to racial trauma. There were examples of you are British to the point where you serve the country and then can actually end up as the ‘other’ where you could be the ‘N’ word. Lola pointed out the positive experiences of the nation coming together to support black players in the Euro football campaign, but unfortunately incidents led to the importance of tackling racism online and offline.

Lola moved on to talk about the large scope of battles ethnic people have to take on. Discrimination globally has led to black people taking on more challenges be it inequalities in health and social care, racism, lack of resources regarding institional racism and more. Lola suggested people need to pick their battles because to tackle so many things will cause a mental strain. We would have to choose our battles. Discrimination can come as Little things, or big things? that those from ethnic backgrounds have to live with every day and god knows how the impact has affected those who unfortunately loose their mental health. Lola spoke more about institional racism in education, the criminal justice system and other places and why it is so important organisations especially health and social care become anti-racist organisations, but they need to work with the community although there is a problem with a power imbalance.

More of Lola’s work can be found on the following sites.

https://www.bbc.com/future/article/20200804-black-lives-matter-protests-race-mental-health-therapy

https://www.adventureinblack.com/blog/mental-health-in-the-black-community-during-covid-19

Kuldip Kaur Kang presents on Religious and cultural needs of BAME mental health patients.

Kuldip who is a social worker for a west midlands NHS trust presented on her research about patients detained on an impatient setting. Emma conducted a lot of interviews and stated that it can be a challenge to know what issues are affecting mental health patients due to not understanding the reality of things.

The one of the main reason Kuldip chose her research was due to her ethnic background and the experiences she has had in the past. She felt concerned and wanted to highlight such issues, but was given the freedom to do so. She wanted to highlight the relation to our religious and cultural identity, but for our benefit at the forum she focused on the carer’s aspect of her research. Kuldip mentioned that although stats can be boring, they are useful in highlighting and evidencing research and it came to no surprise to people that stats show that people from a BAME background are detained from the mental health act is this is disproportionatly high.

Kuldip mentioned about the pressures on the ward, which can led to decisions overlooking patients culture and religious needs. These could be the high turnover on the wards, staff under pressure and lack of leadership. Religion is one of the things that can be important to inpatients, because of how they cope with their mental health although religous views can sometimes blur mental health understanding. Religion and cultural needs cannot be overlooked on a mental health setting. Kuldip spoke how it is so important to involve families and carers in their ‘loved ones’ care because they are more likely to understand the cultural and religous needs especially if the mental health service is under pressure already it would make sense to increase involvement from the patient’s circle of support network.

Kuldip also spoke about the importance of training staff to be more aware of patients needs, but she did stress that when staff feedback about training that they were not sure how to tackle certain issues. A good example of a patient washing their hands to pray, but was challenged because they suffered OCD. As mentioned religous practices of patients can blur into their mental illness, but it might be the one last thing the patient was holding on to. Kuldip also mentioned her research did include other ethnic communities from europe who used the services.

It was mentioned how staff on the wards found it so helpful that families and carers could help communicate cultural and religious needs on the wards, especially if the patient just could not communicate their needs. Kuldip did admit confidentiality did get in the way, but there were good reasons for this. Kuldip gave her recommendations of her study to the forum, which were well recieved.

See below for more of Kuldip’s work

https://thinkahead.org/news-item/research-by-think-ahead-social-worker-finds-that-inpatients-religious-and-cultural-needs-often-go-unmet/

Leonie down updates on the Patient Carer Race Equality Framework (PCREF)

Leonie Down who is the Lead Occupational thearpist for Lewisham under SLaM started off by mentioning that PCREF is something that South London & Maudsley are focusing on in South London, and there are other Mental Health trusts around the country that are also involved in this. These being East London Mental Health trust, Birmingham & Solihil NHS Trust and Manchester mental health trust are involved in the NHS England & Improvement pilot.

Leonie mentioned that in the context of the community around inequalities and systemic racism, this gives hope, to people’s idea of trying to really challenge the power of organizations that proposes these big NHS sites, and sort of takes through a process of maybe the next year or so to identify how NHS can be better and addressing inequalities. Leonie felt it could demonstrate competency within all of the work SLaM do, so she thought maybe it’d be helpful summerize how staff, patient & carer and the community at large work together to identify what competencies on how do well SLaM is doing on BAME experiences of services.

Leonie updated on how we can have an equality in needs, which is being delivered in any partnership with the people that are seen as stakeholders. Secondly, she felt it really educational for the current meeting, discussing excellent knowledge, awareness, and cultural awareness. SL&M are going to find different experiences and initiatives and come up with a position where in February next year, they can kind of launch a proposal on what to work towards.

Emma Wakeman presents on The Missing Voices

Emma talked about the paper she wrote and the 4 main conclusions and findings which came out of the research paper.

https://www.york.ac.uk/spsw/news-and-events/news/2021/s17mha/

The first finding was about the emotional impact of anyone who’s caring any shape or form on how they can relate to emotional impact with the fact that carers felt their voices were not picked up enough.

If things did not go well for carers or they thought that they have been let down, then complaints would certainly appear in the services.

The second finding was on social systems and the affect of what happens if a person was taken out of their social system, what would be the result for carers. Emma mentioned the type of section had a major impact on how patients coped when they were removed from their social system.

The third point was on how carer’s sacrificed their time and energy into providing care and how section 17 dealt with such sacrifices. The 4th part of the paper was examing what support was given to carers and how sometimes there were challenges on getting that support.

Rachel Nethercott presents on Carer’s UK BAME carer’s initiatives.

Rachel Nethercott opened up her talk about how she works with CARERS UK in the policy and Public Affairs team. They have funded by the COVID-19 support fund to run a project with carers trust for Three years, and they will be looking at the experiences under representative carers from marginalized backgrounds. So those are LGBTQ carers, Black and Asian and older aged the carers particularly those who are digitally excluded and also carers of faith. So those groups are part of the project because they believe in dis-proportionally affected by the pandemic. The project itself will look at experiences during COVID and the measures beyond COVID.

Rachel wanted to talk about the BAME carers part of the project and how they are going to be taking a look at building on existing research for the project. Carers UK want to be able to work with services, make recommendations on areas to improve and how best to develop any good good practices that is working well. Carer’s UK also want to learn from those services and practices that do include carers. So for the three years to both carer support services and health and social care services, we hope those services will be more accessible as being tailored, beneficial and with recommendations.

Rachel gave an outline of the project and also allowed attendees to ask questions or feedback on the community project services.

Professor Shirin Rai from Warwick University presents

Professor Shirin wanted to share with us their new research. Prof Shirin did point out there is a problem of BAME communities not being involved in research, but also a lack of BAME communities carrying out research regarding race and mental health.

Her project is called “care, caring, and carers” which is why she thinks the main aim of our project is really to look at sort of care for older people in BAME communities, in Coventry and Leicester which are two diverse and wonderful cities. The research will look at the conditions and impact of COVID.

Professor Shirin really appreciated Lola emphasised the connection between Black Lives Matter movement with the experiences of BAME carers, because we all know the crisis affecting BAME communities, this has been experienced so many times.

Professor Shirin wants the project to try to connect with the carer and the caree. So for all the peoples care, the research also wishes to include both unpaid carers and paid carers. Prof Shirin feels the government has a habit of not funding well for unpaid carer while at the same time trying to learn from the community.

For more information about Professor Shirin’s new research please check the link below

https://warwick.ac.uk/newsandevents/pressreleases/exploring_the_impact/

Thanks for checking out my brief update

Bromley, Greenwich & Lewisham BAME Carer Forum June 2021

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

For June 2021 the speakers were

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

Faith Smith Presents on her Section 136 project

Faith started off explaining how she became a carer, which led to her being a carer advocate due to being involved at South London and Maudsley NHS foundation trust, which led to her joining their involvement register. She was introduced to the involvement register a care coordinator, which she does interview panels, sit on focus groups, training with staff and joining trust values day, which is a staff induction day.

Faith Smith has now been asked to chair and set up a group that is going to be PAN London group. Its aim is to explore section 136 of the Mental Health Act. Section 136 Mental is where the police have the power to remove a person from a public place, if they appear to be suffering from a mental disorder disorder and move them to a place of safety.

The place of safety could be a hospital, although often the outcomes have not been as they should be, and in past experiences there have been tragic events involving the police and those in mental distress. So the idea is that this group that she is going to be setting up, is going to be a solution focus group. The group is going to be made up of experts by experience to be either carers or service users. Where the aim is going to be to map the journey of Section 136. So if an individual has that map, then the journey will be looking at what improvements could be made. So here we can see what outcomes could have been different along the way at each stage, from being someone first becoming unwell to the police being called to then take the person to a place of safety, the hospital or the police station or wherever? And then the outcome how could that experience have been made better? So it’s to identify improvement. Faith wanted to see if members could be involved or at least spread the word.

A question from a carer member queried if 136 was going to be split into two sections where one is for other people or older adults?

Sharon Jennings from Goldsmith university Sociology course presents

Sharon was excited to hear how carers can set up research groups. This was in regards to Faith’s presentation. Sharon mentioned that at Goldsmiths university also have an experts by experience group. This group is for the Social Work courses, and they do a lot of teaching. The experts are involved in the admissions of students, looking at policies and much more. Sharon was happy to ask if forum members were interested of being part of that group or at least being involved with the group, it’s really about developing terms of new social workers, as in social work students on the awareness of service user/carer issues and understanding how to speak to people that use services.

One of the things Sharon wanted to talk about was on the inequalities of social care and racial inequality in social work, but mainly from the position of practitioners. Sharon wanted to point out the kinds of challenges for black Social Work practitioners. She was not sure if most people at my BAME carers forum would have had some kind of contact with a social workers, either in one way or another good, bad or indifferent. Sharon wanted to start with the importance of social work from the students perspective and the experience of black students or black and ethnic minority students.

Sharon mentioned some research done between 2009 and 2012, which was published in 2014. It was asking black and ethnic minority students about almost about their experiences on social work programs in the UK. People felt like they were in an uninhabitable terrain, being on a course of social work or degree course. It was hard to be themselves. It was hard to breathe, it was hard to relax. It was hard to feel that they belong there. They felt that they were climbing and climbing, but not being appreciated, not being valued.

Sharon felt the students found it really difficult to open up about how they felt. We expect our social experience from day one to start talking about their lives, the backgrounds, family, their relationships, their everything in order to talk about there experiences. People don’t feel comfortable on day one doing that, trust has to build up. So people felt that they weren’t equipped for this, because when they did share their own particular cultural learnings or teachings or their background, it wasn’t understood, it wasn’t valued and sometimes it was criticized.

Sharon feels it’s about what people’s life circumstances are like. So for instance, many black social work students have to continue to work. They can’t wait to take time off. There aren’t any bursaries until the second and third year, so the very first year they don’t have money even if they may have caring responsibilities, family responsibilities. So to conclude social work students have a difficult time especially those from black backgrounds.

You can find more about Sharon’s talk via her Youtube discussion.

Emma James from Barnardo’s presents on BAME young carers

Emma from Barnardo’s started her discussion on questioning on the importance the lives of all children and young people who should be free from poverty, abuse and discrimination. Emma mentioned that young carers are part of the millions of unpaid carers in the UK providing care and support for a relative. Some young carers take on their caregiving responsibilities as young as four years old. Others do over 30 hours of caring a week and on top of attending school or college. Emma stated that firsthand the impact caring has on their mental health and well-being is staggering with many suffering from depression, isolation and anxiety. So the children Barnaro’s work with and many others across the country are sacrificing their childhoods and their futures. All this by having no choice but to drop out of school or actively choosing not to go to university or college due to their caring responsibilities.

Emma also pointed out that the BBC did a survey a couple of years ago, which estimated that there are probably over 800,000 young carers in the UK today. So Barnardo’s runs 20 services across the UK that support young young people care for relatives who have a disability or illness mental health condition or drug or alcohol problem. Last year, Barnardo’s worked with 330 500 young carers and their families. Barnardo’s also support many other children and young people in their services who also have caring responsibilities. So in Barnardo’s mental health services they run domestic abuse support services, which will often uncover if these children also Young carers.

Around five years ago Emma did an indepth research with the young carers they support and found that the impact the caring was having on their lives was really significant. The young carers Barnardo’s supports often spent over 20 hours a week caring for their relatives, most commonly their mothers, they often care for siblings as well as parents. These sorts of things Emma found they were doing was cooking, cleaning, administering medication, washing, shopping, helping the cost of siblings providing mental health support.

Banardos campaigned in 2014 around Children and Families Act in the Care Act, which gave local authorities a duty to assess young carers. So this led to more referrals for young carers, but often there isn’t the support once young carers are assessed. There’s often waiting lists for support and in terms of outcomes for young carers, they’re more likely to be not in education, employment or training (NEET), they’re more likely to be bullied at schools and more likely to have poor mental health, loneliness and isolation. Young carers end up with lower grades in school, and they’re more likely to come from BAME communities. Whilst Emma was doing her research across all of their young carers services, it was really clear something that stood out for her, this was that young carers from minority communities had additional pressures and stresses that statutory services were not aware of and they weren’t being supported.

The most important thing that Barnardos do is they help the family get more support from social services so that young carers don’t have to do so much supportive work. Barnardos talk to young carers school so teachers understand their situation and can be supportive. Plus Barnardo’s give young carers advice and emotional support through counseling sessions.

Here is a link to one of Barnardo’s reports on BAME young carers.

BAME young carers update

Keisha York from BAME in Psychiatry & Psychology presents

Keisha York the founder and director of BAME in Psychiatry & Psychology network (BiPPN) wanted to say is it’s been a pleasure, to be invited to my forum again. She was interested just to hear a lot about how BAME carers and the sort of difficulties carers are experiencing. Keisha was just going to focus on providing updates about what the BIPP network is doing and what they would loved to do. Keisha felt that in hindsight and listening to the group, she would have wanted to give some more data and statistics on some of the issues raised on the colonization of the curriculum or representation, but Keisha felt that might be perhaps a part two or part three, because this is the second time they have been invited to my BAME carers forum.

The BiPPN are a registered social enterprise and low profit organization since September 2019, and they are led by mental health professionals and students in medicine in psychology, who aim to prioritize, lots of representation of black psychology. The BiPPN also provide such a community for individuals from racialized backgrounds, both registered and prospective mentor professionals to acquire social, emotional, psychological and developmental support. Whilst the BiPPN do focus on psychiatry and psychology, they do recognize that actually, this has been a really good source of support space and community for anyone who is a mental health professional. So the BiPPN encourage anyone really to join our network and be a part of it and attend the events that they do. So how do the BiPPN achieve this aim of prioritizing and advancing the representation of racialized groups in those professions?

The BIPPN provide insight, guidance and knowledge on access in psychiatry and psychology. The BiPPN focus on this primarily because they are aware of the issues. Keisha feels as someone mentioned earlier, these issues have been discussed for years around what are the barriers to individuals accessing these careers (Sharon’s presentation on the problems BAME students face studying sociology).

The BiPPN want to learn and focus on how they can equip these aspiring psychologists with the skills to actually navigate through those barriers, and actually be more equipped to address some of them as they progress in their careers. The BiPPN also increase the exposure to learning and discussion of cross cultural and race related psychological theory practices and research.

Keisha is aware about colonized curriculum that only addresses the mental health of white Eurocentric individuals. So what the BiPPN aims to do is increase the exposure of models, approaches and theories which relate more to how black and racialized groups experience the world as reality, plus how they suffer from mental health issues. Lastly, the BiPPN explores the various approaches to addressing black and ethnic monetize groups in mental health and racial disparities and mental health care. So the BiPPN events are attended and are hosted by a range of speakers, both psychiatrists and psychologists. The BiPPN increase exposure to that knowledge to either aspiring or current practitioners. So they know how to address this within the NHS and in their various workforces.

For more information about the BiPPN please see link below.

BiPPN Network website

This concludes the BAME mental health carer forum update for June

Lewisham BAME MH Carer Forum April 2021

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

For this month’s speakers we had the following.

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

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Connecting with BAME mental health unpaid carers

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

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

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

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

Below is just some key factors.

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

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

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

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

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

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

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

Lewisham BAME MH Carer Forum February 2021

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

For February our speakers were.

Dr Shubulade Smith CBE Psychiatrist from South London & Maudsley.

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

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

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Lewisham BAME MH Carer Forum January 2021

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

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

On the January agenda were the following.

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

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

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Lewisham BAME MH Carer Forum November 2020

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

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

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

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

Dr Emily West presents

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

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

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

UCL Marie Curie palliative care research department

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Professor Frank Keating presents on his research

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr Laura Cole presents on Care home research

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

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

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

Lewisham BAME MH Carer Forum October 2020

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

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

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

UPDATE FROM RUBY PEACOCK.

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

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

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

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

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

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

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

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

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

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

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

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

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

QUESTIONS FROM MEMBERS

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

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

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

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

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

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

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

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

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

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

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

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

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

ARTIST LEO JAMELI PRESENTS TO THE FORUM

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

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

You can see the art projection in the link below.

The invisible carer site

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

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

CARER MEMBER RESPONSES

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

HEALTHWATCH LEWISHAM ENGAGEMENT

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

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

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

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

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

Lewisham BAME MH Carer Forum September 2020

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

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

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

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

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

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

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

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

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

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

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

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

Question and answer session at the forum

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

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

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

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

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

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

The impact of COVID and technology

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

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

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

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

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

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

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

Presentation from SLaM QI Peer Project Worker

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

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

Question and answer session regarding Quality Improvement

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

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

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

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

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

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

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

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

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

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

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

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

Lewisham BAME MH Carer Forum July 2020

enteranceWelcome 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.

CQC Presentation

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.

Quality-Care-Commission

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.

Picture4

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.