Category Archives: Lewisham BME Mental Health Carers Forum

April Carer Forum Updates 2023

Welcome back to a quick update of my carer groups and forums. I have resorted to doing a brief update due my current projects raising carer awareness. As of this moment, I am writting fiction carer stories. You can check out my YouTube channel to view those stories. I have around 13 more stories focusing on caring for someone with mental illness, I will then work on stories focusing on caring for someone with cancer and follow that up with a book.

Until then, here are my updates below.

Lewisham Mental Health carer forum

For my Lewisham MH carers forum we had engagement from Mina Hadi who have lived experience of mental health. She is the service user representative for the Patient Carer Race Equality Framework over at East London NHS Foundation Trust.

Mina would have attended my ethnic carer forum, but there was a clash, so we agreed she can present at my Lewisham carer forum. I often say to members of my carer group to network. This is vitally important if carer members are involved in a community project. This is why I try to link up with other groups involved in increasing equity for ethnic minorities using mental health services.

Mina talked about the importance of PCREF and how East London NHS FT is working towards reaching out to marginalised groups. These being diverse ethnic groups, refugees, asylum seekers, the homeless and the LGBTQ community. All are vulnerable to mental illness due to discrimination, stigma and lack of support. Mina talked about what needs to be done and work in progress.

The next speaker was Dr Georgina Charlesworth from University College London.

She is the Associate Professor in Research Department of Clinical, Educational and Health Psychology.

Her main focus is on dementia where she has wrote a number of papers. Some are shown below

  • Living alone and risk of dementia: A systematic review and meta-analysis
  • Befriending carers of people with dementia: randomised controlled trial
  • Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial.
  • Examining the Lancet Commission risk factors for dementia using Mendelian randomisation

Dr Georgina was joined by another researcher linked to North East London NHS Foundation Trust. Dr Georgina spoke heavily on the importance of dementia carers. She was impressed that such a carer forum existed and felt that we as a group set an example. Dr Georgina spoke about the problems of stigma and she talked about one of her projects, which was the Carer Supporter Programme within Prof Martin Orrell’s NIHR-funded programme entitled “Support at Home: Interventions to Enhance Life in Dementia”.

The new Alzheimer’s Society service manager for South East London was also due to join us, but were unavailable and I am hoping they will be free next time.

Ethnic mental Health carer forum

This is a forum not bound to a specific area. There should be places for minority ethnic carers to attend, so I often advertise the group to other NHS mental health trusts. The main group members are usually from South London.

The first speaker for this carer group was Abigail Babatunde from Kings College London. She spoke on updates for the project advanced directives black people.

The Advance Statements Project is a research project on getting advance statements – also known as advance choice documents or advance directives – to work for Black African and Caribbean service users who have previously been detained under the Mental Health Act, their carers, and mental health staff.

The goal of the research is to:

  • Help reduce detention under the Mental Health Act for Black service users,
    Support, hear and understand Black service users and their carers/supporters,
  • Know and further understand the issues surrounding using advance choice documents and why staff members may not follow them,
  • Reduce coercive care in mental health care, and to better the relationships between Black service users, their carers/supporters and staff/professionals.

There is a follow up event at the Ortus (Maudsley NHS) below.

The next speaker was Denise Mantell from Bromley council. Bromley Council is currently developing its Carers Strategy and would like to hear from as many carers as possible. Since Oxleas mental health services covers Bromley, it was a chance carers could get to be involved. It would help if the carers strategy involve those caring for someone with mental illness.

Talking about Oxleas NHS Foundation trust, we were joined by Japleen Kaur and Marie-france mutti. They spoke about the new Funding scheme – Improving patient and carer experience grants.

If those within Oxleas have an idea that will improve patient or carer experience, they can bid for funding (up to £750) from our charitable funds. The project ideas need to be developed jointly between members of staff and people who use Oxleas services or care for people who use Oxleas services.

Stages

  1. Application form completed and sent to our Involved Network
  2. Applicant informed of bid outcome
  3. Transfer of funding arranged
  4. Activity takes place
  5. Bidder shares photos/feedback on how funds have been used.

Scheme criteria

• The grant should be spent on enhancing the experience of people using our services and their families
• It should be used for activities/items that are not funded by trust services.
• It should benefit at least three service users.
• All bids need to developed joined with people using our services and staff members.

The first application period for the Improve Fund is open now until 31 May 2023.

If you have a query about the fund, please email: oxl-tr.involved@nhs.net.

Joint Southwark and Lambeth Mental Health Carers forum

Here are the update’s for my other carer forum I run in the afternoon for the last friday of the month. I used to run these forums seperately, but due to covering a lot. I have decided to merge them.

We were delighted to be joined by another speaker from University College London. This was Dr Rebecca Lacey who talked about her study on Young Adult carers in the UK.

This was following off from Carers Trust “Young Carers Action Day”, but unfortunately it was too late for Dr Lacey to attend in March.

Staff from Lambeth Carers Hub attended to hear more on her research.

You can read Dr Lacey’s paper on the link below.

https://www.mdpi.com/1660-4601/19/21/14076

The next speaker was Sarah Allen who is the Head of Patient Experience at Guys & St Thomas NHS FT. The hospital trust is currently working on their Carers Strategy. I often to say to all carers that it is very important to engage with hospital service carers strategy.

It is not enough for a carers strategy to exist, but to be used to hold services to account as in “You Say We did” focus.

GSTT want to involve families and carers in all aspects of their services.

They aim to recognise, value, include and respect carers. Plus treat them as expert partners at the heart of decision making for the person they care for.

I also presented the new NHS England hospital discharge toolkit to the group, there was a bit of confusion as some felt the toolkit was for triangle of care.

https://www.england.nhs.uk/london/our-work/carers-and-hospital-discharge/

In the end I pointed that this was for acute hospital services in London.

I am also pushing to engage with GSTT Cancer and Surgery Clinical Group to raise the profile of cancer carers. Once I have built a group of cancer carers, I am hoping for engagement for that hospital trust especially regarding the cancer group. I am also getting support from Kings NHS and eventually will expand to other hospital trusts.

South West London MH carers group

This group is a hybrid as there is a carer-led peer focus for the first part of the group. The next part is finding out about services and how they are supporting carers.

The group is strictly carer-led and co-facilitated by SW London carer Ava. She does the peer group section, while I will focus on speakers and engagement.

We had a great turnout as all 5 carer centre’s help promote the group, but we can out of time for the peer support section. The group seeks engagement from the local mental health trust South West London & St George, but this can be difficult, probably lack of staff maybe? Still we got engagement from Kingston Hospital who have a strong carer focus.

We where joined by Beth Mburu who is one of the Clinical Liaison Practitioners. Kingston Hospital is working on their carers focus and Beth talked about the following

  • Hosp. Discharge Planning Toolkit (aimed at staff)
  • Carers’ Needs Assessment Template (augmenting and embedding the Carers’ Agreement)
  • Carers’ Passport
  • Triangle of Care – hospital self-assessment tool and lessons learned/embedded
  • Resource for first time Carers / people who give their time to support a vulnerable person
  • National resources -already in existence from Carers’ UK – communicate and disseminate to the right people
  • Live/real-time digital tool aimed at Carers’ drawing together local provision and resources
  • Safe Transitions of Care – checklist for front-line staff
  • Hospital checklist / advice and Information

Kingston hospital NHS FT also had a carers event on the 4th of May to engage with carers and let them know about the work they are doing to support carers.

Again I am also focusing on engagement from the hospital’s cancer services to prepare for my cancer carer group. It is important to know who does what and how they focus on cancer carers.

March Carer Forum Updates 2023

Welcome to my March update of most of my carer forums. These forums are for those caring for someone with mental illness. The idea of the groups is to allow unpaid carers a chance to find out about mental health services. The forums also allow researchers from universities and hospitals to update carers on current trends affecting carers and mental illness.

Lewisham Mental Health carers forum

For this carers forum we were delighted to have Bobby Pratap from South London and Maudsley NHS attend. Bobby is the Director of Implementation for the borough of Lewisham. This means in laymen’s terms that a large investment I guessing around 100 million will be focused on changes to mental health services in the borough.

With that kind of investment, it is vital for patient, carer and public engagement. Bobby comes with a wealth of experience straight from NHS England’s as the Deputy head of Mental health.

Bobby presented the challenges that mental health services face in the borough of Lewisham. He also presented some feedback from engagement events under South London & Maudsley. Bobby was certainly tested by the members of the forum who grilled him on NHS trust resources.

I also presented the new NHS London Hospital discharge toolkit. Since the Carers UK 2021 report, it has been widely known that unpaid carers feel uninvolved in hospital discharge. Carers complain that they are invisible to the NHS. So NHS London carer leads have come up with a hospital discharge checklist

The benefits to involving carers in hospital discharge are

Some Benefits

Reduced carer strain and breakdown
Patients less likely to re-admitted.
Caring situation is more sustainable
Better health outcomes for both patient and carer
Reduced overall cost to system

With some Accute hospitals taking the lead, there is hope other hospital will become carer friendly and see unpaid carers as part of the team.

The resource can be downloaded from below via Carers Trust Website

https://carers.org/resources/all-resources/142-carers-and-hospital-discharge-toolkit-for-london-hospitals-and-community-providers

South west London Mental Health carers forum

This forum is facilitated by myself and Ava who is a mental health and carer campaigner. The forum covers the boroughs of Kingston, Merton, Wandsworth, Richmond and Sutton. As a group focusing on mental health carers, we get support from the carer centres and from local Mind and Rethink organisations.

There was no speakers for the group this month, so I presented the hospital discharge carer toolkit. I also covered updates regarding the Triangle of Care.

Joint Southwark & Lambeth MH carers forum

For this group. Carers had a chance to find out what a Mental Health Solicitor does. We were joined by Burke Niazi Solicitors. The solicitor who represented my late mother had engaged with our group to answer queries, issues and questions. The forum was well attended and even some had attended from my other forums.

We were also joined by Lee Roach who is Lambeth’s carers lead for Maudsley adult services. Lee is also the Head Occupational Therapist for Lambeth Operational Directorate. Lee updated carers from Lambeth on services related to triangle of care. I was also interested in how Southwark carer leads were engaging with carers. It might take a while for them to drop by our group since Guys & St Thomas NHS are due to attend next month to speak about their carer’s strategy.

Lastly the group was joined by Guy Swindle who is the Deputy Director of Lambeth Living Well Network Alliance.

Greenwich Mental Health Carers forum

I only run this group Bi-monthly and Greenwich carers heavily supports the group. We get great support from Oxleas NHS and the Royal Borough of Greenwich often attends when they can. For this group we had engagement from Lisa Moylan who is Oxleas head of Mental Health Legislation.

The main reason I asked for Lisa to engage with the forum is to allow carers to understand what the department does, but also get an idea of how the Law department will deal with the new changes to the Mental Health Act. The MP will also chat with carers about their thoughts about proposed bill.

At the group, I updated members on updates regarding Greenwich Carers Strategy.

Some of the updates were

Raising awareness of caring with local employers
Developing a carers self-assessment app
Research with carers from ethnic communities
Further development of the Mobilise digital platform
Exploring feasibility of a Carers Card

There are plans Greenwich carers partnership board to Engage with local GPs and Engage with hospitals. Talking about hospitals, I also presented the London hospital carers discharge toolkit.

Ethnic Mental Health carers forum

This is the only forum that I run that focuses on carers from ethnic communities. It is also a forum that can actually reach out via several mental health trusts as sometimes we get attendees from SWLSTG, West London Health trust, Kent & Medway and CNWL, but the main focus is what South London & Maudsley or Oxleas are focusing on. The group also engages with speakers from universities and researchers. We also can get updates from the local authority or Healthwatch.

The speaker for March was Natalie Creay who is Founder of Liberating Knowledge, she is also on the advisory board of The Lancet Psychiatry magazine and a trustee of The London Community Foundation.

Yes, she does a lot. Natalie spoke to us regarding health inequalities of Black and Asian people. Her research looked at Closing gaps in patient data for Black and South Asian communities.

Through the focus groups and interviews they conducted with healthcare staff. It was found that

  • Staff were less confident about describing why data is collected or how it is used
  • Staff felt that a lack of people in leadership roles who are committed to tackling bullying, institutional racism and health inequalities
  • Some staff also referred to a concern from Black and South Asian communities about whether they can trust the NHS given past harms
  • There were innovative ideas proposed such as the NHS being more radical in how it thinks about data ownership and giving more control to people and their communities over their data and the insights generated from them.

It was found that The burden of tackling health inequalities rests on people with lived experience.

There were several recommendations regarding the research, some listed below.

  • Create the conditions for systemic change to enable the following recommendations to be delivered by accelerating efforts to eradicate racism within the NHS. This should include developing the cultural and racial capability of the workforce.
  • Consider developing a race equity framework for physical health services that draws on the approach used for the Patient and Carer Race Equality Framework in Mental Health services.
  • Secure the support and commitment of senior leaders to improve data practices, embed inequalities work and create space for staff to innovate within the NHS.
  • Actively challenge ‘hard to reach’ narratives that encourage the perception Black, Asian and minoritised communities are disengaged or unwilling to share their patient data.
  • Equip healthcare workers with the tools to hold meaningful conversations about data: explore more innovative approaches that provide engaging ‘bite-size’ learning material targeted at healthcare workers.

This led on to one of our members Brenda who is a member of the Patient Carer Race Equality Framework to report back how Maudsley is using the framework to increase health equality and reduce racism. We also got updates from the Public Health Training and Development Manager for Lewisham who have been working hard to reduce health inequalities within ethnic communities. This was emulated on projects from Bromley, Lewisham and Greenwich Mind Updates.

This concludes most of my carer forums for March.

February carer forum updates 2023

Hello carers, here is another update from most of my carer forums. Usually I try to update on each of the forums, but due to spending time writing books and raising carer awareness, it is not always possible to update each forum page.

  • Lewisham Mental Health Carer forum update

For my Lewisham group, South London & Maudsley want to engage with the London borough of Lewisham to explain new ideas for mental health services. There will possibly be a revamp of the Ladywell Unit that is based at Lewisham Hospital.

The speakers who looked to engage with carers were Sir Norman Lamb and Bobby Pretap, but unfortunately the meeting had to be cancelled.

The other speaker Angela Brient who is a PhD Researcher in Public Health spoke about the Impact of trauma. Angela spoke about her lived experience, which comes from caring for her husband who sustained a spinal injury whilst on deployment with the Australian Air Force in the Middle East. She was his primary carer for over a year, but ultimately, her husband took his own life.

The carer’s group were grateful for Angela’s insight and we learnt more of the Impact of Trauma course that Dr Julie Langan Martin mentioned to me a while back. Dr Julie is the Senior Lecturer in Psychiatry at the University of Glasgow. We are hoping to hear more updates on the Impact of Trauma course at a later date.

  • Joint Southwark & Lambeth Carer forum update

For my joint mental health carer forum over in Southwark and Lambeth. Carers were delighted to get engagement from Helen Hayes MP for Dulwich and West Norwood. Carers spoke about their past experiences of providing unpaid care, but the main topic was the progress of the new Mental Health Act. Members of the group are very keen to observe the debate in Parliment.

Other carers were interested to speak to Richard Okolo on how a mental health solicitor could help someone who has been sectioned. Richard could not make the forum, but we hope to hear from him in March.

  • Ethnic Mental Health Carers forum Update

This carers forum specifically focuses on the experience of ethnic and diverse carers. Our first speaker was a carer on involvement at South London & Maudsley. Currently Maudsley NHS is an anti-racist organisation and seeks to increase health equity. South London & Maudsley NHS is signed up to the Patient Carer Race Equality Framework (PCREF). PCREF exists to eliminate the unacceptable racial disparity in the Access, Experience and Outcomes of Black communities and significantly improve their trust and confidence in our mental health services.

Annette Davis who is the Chair of the PCREF Service Users and Carers Group then gave updates to members. Annette mentioned that PCREF is a UK wide NHS initiative and South London and Maudsley are one of the first Trusts in the country to address institutionalised racism in the NHS. We heard updates on new flyers to advertise to the community on how they can hear updates or get involved in being an activist.

The next speaker Dr Brenda Hayanga spoke about her new research “Ethnic inequalities in multiple long-term health conditions in the United Kingdom: a systematic review and narrative synthesis”. Yes, I know it is a long title, but I do not know many research papers that have short titles.

Still, the importance of this research cannot be underestimated as I had just published my 4th book regarding health inequalities.

Dr Brenda will be speaking at an exciting event in april. The event focuses on Ethnic inequalities in healthcare for people with multiple conditions.

At the event there will be the following speakers

  • Katherine Merrifield from the Health Foundation
  • Dr Habib Naqvi who is Chief Executive of the NHS Race and Health Observatory
  • Dr Jayati Das Munshi who is a Clinical Reader in Social and Psychiatric Epidemiology at KCL.
  • Eve Riley who is based at Macmillan Cancer Support
  • Jabeer Butt OBE whose work looks into tackling discrimination and disadvantage.
  • Dr Brenda Hayanga who is a Research Fellow at the Department of Global Health and Social Medicine, King’s College London

The final update at the ethnic MH carers group was from Carers UK Melanie Crew. Melanie is the Senior Policy and Research Officer at Carers UK. Melanie talked about the new initiative on Good practice guide on supporting ethnic minority carers. The briefing follows Carers UK’s landmark report examining Black, Asian and minority ethnic carers’ experiences of the pandemic.

You can find out more from the link below.

https://www.carersuk.org/press-releases/carers-uk-releases-good-practice-briefing-for-supporting-black-asian-and-minority-ethnic-carers/

  • South West London Mental Health Carers group.

Obviously my 3rd biggest group, which covers 5 london boroughs. The group is co-facilitated by Ava who is involved at Kingston Carers Network and SWLSTG. The group is getting lots of support from the 5 carer centres.

We had a visit from Kirsty McLachlan who is based at Richmond Borough Mind. Kirsty is the Carers and Parents in Mind Manager and is very keen to promote the forum in our Carers in Mind monthly newsletter. It is great to see support and promotion about unpaid carers.

Our 2nd speaker was Chloe Smith who is the Healthy Communities Builder from Kingston Voluntary Action. She was joined by BBC MultiAward winning Poet, Michael Groce. They are working on a set of poetry workshops aimed Black, African and Caribbean Communities over in Kingston. There will be guest poets that will come and inspire people’s work throughout the weeks ahead by sharing their own stories and work. I was the guest poet for week 2 (more on that later).

You can watch a promotional video below

The third speaker was Wendy Doyle who is the Head of Patient Experience St Georges university hospital. This is one of the hospitals were I run a carer’s stall. Wendy updated our group on the carer’s focus the hospital is planning. Wendy also updated us on a healthwatch report.

January carer forum updates 2023

Hello fellow unpaid carers. I am doing a quick update of most of my carer forums that I facilitate in London. These groups focus on mental health carers. Basically people who are caring for someone going through mental illness.

LEWISHAM MENTAL HEALTH CARER FORUM UPDATE

Members of the Lewisham group were interested in how the Ladywell Unit was performing for unpaid carers. The Ladywell mental health unit has several wards. The unit is based at Lewisham & Greenwich NHS trust. We were joined by Inpatient carer engagement Eunice Adeshokan who gave us an update. We were also joined by Cath Collins who leads on engaging carers in the community.

The next speaker was Caroline Norrie who is a research fellow at Kings College London. She spoke about research regarding addictions and the gambling industry.

She kindly passed on details on support services

Online gambling: GamStop is a free scheme that can be used to allow gamblers to self-exclude from online gambling websites and apps run by companies licensed in Great Britain. http://www.gamstop.co.uk

Blocking software: A GamBan software licence enables people to block access to online gambling apps and websites. The licence can be obtained for free if it is requested through the National Gambling Helpline.
https://gamban.com

Blocking gambling banking transactions: Some banks offer blocks on gambling transactions, with some having a 48-hour cooling off period before it can be removed which may help to prevent relapse. For information about which banks offer a gambling blocking service go to: https://www.gamblingcommission.gov.uk/public-and-players/page/i-want-to-know-how-to-block-gambling-transactions

It is worth noting that people can no longer use credit cards to pay for gambling.

Betting shops, casinos, arcades and bingo halls:

All gambling premises such as arcades, bingo halls and casinos must be part of a multi-operator self-exclusion scheme (MOSES). This allows a gambler to make a single request (by filling in a form) to self-exclude from all premises offering the same type of gambling, such as betting shops. Once a self-exclusion agreement is made, the gambling company must close the gambler’s account, return money in it, and remove personal details from their databases.

For betting shops see https://self-exclusion.co.uk/ or ring 0800 294 2060
For casinos see https://bettingandgamingcouncil.com/sense-self-exclusion-scheme
For arcades see https://bacta.org.uk/self-exclusion/

For bingo halls see https://www.bingo-association.co.uk/self-exclusionThe National Lottery Healthy Play | The National Lottery (national-lottery.co.uk)

JOINT SOUTHWARK & LAMBETH MH CARERS FORUM

For my Southwark & Lambeth mental health carers forum, we were joined by Toby Lee-Manning who is the Carers Development Lead for St Christopher’s Hospice.

St Christopher’s Hospice exists to promote and provide skilled and compassionate palliative care, but there also should be a focus on unpaid carers who are caring for someone end of life. The difficultly appears when people who are providing unpaid care are not sure what to do.

Luckily St Christopher’s Hospice have developed online courses aimed at carers, this is what Toby presented to our group.

Caring for Carers – online course
https://www.stchristophers.org.uk/timetable/event/caring-for-carers-drop-in-course/

We were also joined by Damian Larkin who is the Digital Health Nurse Lead at South London & Maudsley NHS. Damian spoke about BETH. Basically Beth is a free and secure way for our patients and carers to stay connected with their care team.

If you are interested in BETH – please check out SLaM BETH site

ETHNIC MENTAL HEALTH CARER FORUM

For my ethnic carer forum we were joined by Carers UK. Patrick Knock presented a project where Carers UK is currently working a series of ‘Carers Active Stories’ videos to highlight to unpaid carers the benefits of being physically active from the perspective of a carer giving their firsthand experience.

Here is a video link below

Next was Simon Mayers who is the Equality, Diversity and Inclusion Lead for Maudsley covering the borough of Lewisham. Simon updated the group on how Lewisham is working with the new equality policy. This policy is called “Patient Carer Race Equality Framework”. This framework is aimed at mental health NHS trust across England and it is important carers get a chance to get updates and raise any queries.

We also had Tafadzwa Marapara from Oxleas NHS trust. Oxleas is also adopting PCFREF and it was only fair to hear what they plan on engaging black carers and patients using their services.

Kevlin one of our carer members is heavily involved in PCREF over at the maudsley, so I gave him a chance to update the group. Plus we also had Halima Ali join us to speak about her research project on What are the Occupational experiences of BAME unpaid mental health carers for people with a mental health diagnosis?”

SW LONDON MENTAL HEALTH CARER FORUM

This carer forum is slightly different from my other carer forums. This one covers multiple boroughs as we are developing a strong carers network. This group covers Richmond, Merton, Kingston, Wandsworth and Sutton. We get support from all 5 carer centres.

This group also spends a fair bit of time for carers to update how things have been progressing. We were also joined by Nicole Smith who is a Darzi Fellow in Integrated Medicine. She spoke to the group about Virtual Wards and how they are important regarding the NHS. She is also doing some research.

You can give feedback on her survey at the link below

Virtual Ward survey

https://forms.office.com/Pages/ResponsePage.aspx?id=slTDN7CF9UeyIge0jXdO4_BibUCjlwxKiw29ufBbJcJUNzczUFhSTkVXQVVLTFJRUUpYSDdXSU9GVC4u

GREENWICH MENTAL HEALTH CARER FORUM

This forum is slightly different as it is linked the the Greenwich carer peer group I facilitate for the borough. Greenwich Carers centre help me run the group. This forum runs every 2 months.

The forum was filled with a lot of speakers so I was glad that Oxleas work hard to engage with carers.

We were joined by Catherine Seabourne who is Oxleas Head of Nursing. She talked about her role and answered queries from carers. We were hoping to hear developments from Jason McCulloch who Service Manager regarding Greenwich Carers Strategy, Jason was unable to attend.

We were also joined by Ariane Zegarra and Janice Williamson. Janice is the new Carers Network Lead for Oxleas. We were given updates regarding social care.

This was the January update for most of my carer groups.

Ethnic mental health Carer Forum September 2022

Been a while since I did a carer forum update, but felt I should do one otherwise I would be distracted by something else. Here is the brief update of my ethnic mental health carer forum for September 2022. The forum is aimed at those from an ethnic background caring for someone with mental illness.

The speakers for September are listed below

  • Madeleine Oakley on her Kings College London carers peer research group
  • Colin King presenting on the Lancet report – Whiteness, madness, and reform of the Mental Health Act
  • Louise Goff on the Kings college London Health promotion Heal-D: a culturally-tailored diabetes self-management programme for adults of African & Caribbean heritage
  • Madeleine Oakley presents on her carers peer group

Madeleine from Kings College London has been using her skills as a psychotherapist to give people space to talk about their experiences, she has found that carers really appreciate connecting with each other. Madeleine also has the lived experience of caring for somebody with autism. Her groups have been for people who are caring for a family member who has got autism. So she started with autism and eating disorders, because there was a lot of research going on about that at the South London and Maudsley.

She is now doing an autism and psychosis carer group. Which is once every Friday morning, a month. Madeleine stated that unfortunately it does clash with my group one Friday morning, but basically, the next one is on the 23rd of October. The latest one has already started in September. Madeleine hopes members of my group can help spread the message.

Madeleine has also been interviewing family carers of people with autism and psychosis. So they’ve got both conditions that people are looking after. She is trying to explore the experiences of carers. How did they get the assessments? How did they get the treatments, how was being a carer affecting their lives?

Questions from carers

  • I started off asking “Is this group indefinite or is it just runs for a set period?”

Madeleine responded

The she wishes it was indefinitely. They are always looking for more funding, but it’s only until the end of March. So it’s a short thing as it is basically part of her PhD. But at the same time, she is applying for funding to sort of make the carers group permanent because the sad thing is all the work that she has done with carers since 2019, when she finishes her PhD, then where is the group going to?

  • Colin King presenting on Whiteness, madness, and reform of the Mental Health Act

Colin explained that he was sectioned schizophrenia within Maudsley many years ago, but what he was really concerned about was the whiteness within the theoretical and diagnostic framework was leading to historically the over representation of particular groups.

This led Colin to do an analysis looking at the start of something called cartwright 1851, which is the first diagnosis of race, which is when the black person ran away with slavery, they were diagnosed with, with depomania, and if you do the travel on the lunacy Act, at the mental health Act to the white paper Act to the White Paper review, Colin mentioned that we still got an over representation or of communities in the mental health system.

Colin wanted to understand what was whiteness, what why was whiteness, such a pervasive, intrusive and powerful intervention is in terms over representation.

Colin stated that some of it can be located in the history of theories of psychology and psychiatry that perpetuate eugenic theories about the black body and the black mind. And these theories emerged in the period of slavery, when there was a perpetuation of a division between what was whiteness as superior, and blackness as inferior. And these are some of the writers from Cartwright perpetuate his idea. Colin mentioned that even Henry Maudsley who ran the Maudsley had perpetual eugenic ideas about race.

Colin was really concerned about what the outcome this lead into in terms of particular types of whiteness, and the outcomes for diverse communities over the last 400 years, but particularly where we are with the activism for the PCREF (Patient Carer Race Equality Framework) and other campaigning groups.

So Colin began to analyze two diagnostic frameworks in terms of why they were leading to these race diverse outcomes, DSM-5, and also ICD-10. Colin mentions a book where whiteness contributes to the legalization of race as a diagnostic framework.

This leads to a problems with ideas that black people are much more naturally disordered, and what’s more psychotic. Colin felt that as activists, instead of trying to change the diagnostic framework, we should try to improve the system rather than dismantle it. THe main concern he was looking at, was community treatment orders.

And the data has continued to show that a particular groups are over represented are usually black Caribbean men, South Asian patients, women, but the biggest concern for him was why is it in 2007, when they introduced something called Community Treatment orders that 92% of them are used in relation to black men. And why is it with restraints show 75% of them have been used in relation to men. So Colin wrote a paper and it was really a plea for the abolition of community treatment order which he interpreted as a new type of slavery in mental health care and needed to be changed.

Colin spoke about the importance of being an activist, but also allowing lived experienced from the community to be involved in training and raising the importance mental health in the communities. Colin mentioned we all have something to contribute and if MH systems and beyond including schools, housing and communities services do not include minority lived experience then it hurts the community as a whole.

  • Louise Goff presents on a culturally-tailored diabetes self-management programme for adults of African & Caribbean heritage

Louise started training as a dietitian about 25 years ago, and then she went straight into a research career all focused around type-2 diabetes. This was on how nutrition and food affects diabetes, how it can prevent diabetes, how it can treat diabetes, She has been doing that for about 25 years now. However through her education, she was well aware that rates of diabetes were were significantly higher in people from African and Caribbean backgrounds, as well as in other minority ethnic backgrounds in the UK.

She then became really aware of contradictory messages from her professional colleagues compared to her own family and my social network. The messages that she had from her professional colleagues and network was that, people weren’t showing up for their diabetes appointments, and therefore, they didn’t care about their diabetes. This was particularly common in people of African or Caribbean heritage. And so there was this perception that diabetes wasn’t thought to be serious and wasn’t cared about. Speaking to her friends and family, particularly people who had diabetes, were so fearful of their diabetes, and so worried about their diabetes, and really wanted information about how to improve diabetes, how to avoid diabetes.

So that really led to her wanting to focus her research career more towards understanding that situation and understanding on what is going on in the health system. And what is going on in the communities. She has been using her research platform to try and unpick and work towards trying to improve that situation really. A while back she received some research funding to develop diabetes self management program specifically tailored to the needs of adults from African and Caribbean backgrounds

The project has the following skills

• Group-based
• 7 sessions of 2 hours – 1-hr educational discussion & 1-hrexercise class
• Delivered weekly
• Delivered using video conferencing
• Dietitian & community facilitators

The program is called healthy eating and active lifestyles for diabetes, or abbreviated down to heal D, but it’s a self management program that’s been developed to help people who are living with type-2 diabetes, to really understand what they need to do in their self management. In terms of diet and physical activity and other lifestyle components to improve the management of diabetes, all the while specifically tailored to African and Caribbean culture.

The program is called healthy eating and active lifestyles for diabetes, or abbreviated down to heal D, but it’s a self management program that’s been developed to help people who are living with type-2 diabetes, to really understand what they need to do in their self management. In terms of diet and physical activity and other lifestyle components to improve the management of diabetes, all the while specifically tailored to African and Caribbean culture.

Louise stated that this is about cultural health beliefs, cultural foods, cultural practices around food and physical activity and body weight. And all of the things that we know about medications and all of the things that we know that are related to diabetes management.

Louise continued she is actually following on from the really important messages that Colin was just sharing with us. when she went about developing this program, she knew that it was the people with the lived experience who were the experts through their lived experience that really needed to lead this project to understand what was needed in a program that would really support people.

So all of this work was done using a sort of community partnership approach, whereby they engaged with our communities, and this was conducted in southeast London.

Ethnic mental health Carer Forum August 2022

Welcome to a quick update from one of my carer groups. This one is from the August gathering of the online Ethnic BAME mental health carer forum. A group that focuses on ethnic mental health carers, diversity, race and mental health. I am being a bit naughty since I have not done an update on my groups for some months (busy working on a few things as usual).

We were lucky to have the following speakers attend for August 2022

  • Dr Karen Jutlla (Dementia Lead for the Institute of Health at the University of Wolverhampton) on Race and Dementia
  • Faith Nyandoro (Senior Lecturer) – impact of culturally and personally tailored music and singing interventions
  • Dr Sheila Hardy​ (GP, Carer and Primary Care Mental Health Trainer) – Parity of Esteem
  • Melanie Crew (Senior Policy and Research Officer at Carers UK) – Carers UK campaign updates

  • Dr Karen Jutlla presents to the group

Dr Karen started out by stating what her current role is being the dementia lead at the University of Wolverhampton. She talked about her research interests which has been on going for 15 years looking at dementia care and ethnic minorities, and what research she can do to improve care. The research then feeds into her teaching. This is where she feels responsible for overseeing all the dementia education on the courses she teaches. Dr Karen mentioned lot of her work is about supporting services, healthcare workers and policy makers to make sure that their services are culturally inclusive.

Karen then pointed out that she invited her PhD students Faith along to the ethnic MH carer forum, because she thought we would be interested in the work that she’s doing. Plus it would be a fabulous opportunity for Faith to get our feedback. This is because the group is seen as people with experts by experience, and Faith is looking at music therapy and the African Caribbean community for people living with dementia and what the benefits of such a creative therapy can be.

To hear more about Dr Karan’s work, check out her website – https://drjutlla.com/

  • Faith Nyandoro presents on music therapy for dementia project

It was now Faith’s turn to present as she mentioned her supervisor is looking at her research interest in dementia and music therapy for people living with people living in the Afro Caribbean community.

Faith pointed out that it is a qualitative study. And the topic is to explore “the impact of culturally and personally tailored Music”. Plus also seeing individual the health and well-being of people living with dementia from black, African Caribbean background.

The group started to ask a few questions on what it means, where Faith explained that they where looking at different types of music in which she also listened to from the Afro Caribbean community, but also Africans include music such as Calypso, Afro beats, reggae and so on to see if that has an impact on the health and well being of people living with dementia.

Faith mentioned what Karen was talking about, in that there’s been different interventions to manage Dementia, and some of the interventions that have come up have been political interventions and medical interventions, using drugs available to treat dementia. There also have been some non pharmacological interventions using therapies that being reality orientations and validation, CBT, and so on. Faith stated that unfortunately pharmacological interventions although good, can come with side effects. So with this, the government really pressing on to looking at non-pharmacological interventions. These interventions may not really need the use of drugs. It can improve the health and well being of people living in the moment with dementia.

Faith continued by stating that few black Caribbean people have access to these non pharmacological interventions. So a critical aspect of supporting people with dementia, particularly people from BME communities is by developing interventions that are meaningful and culturally sensitive. And so in terms of music, which is her area of interest, you can find that the interventions that are out there, should be specifically tailored for people. Just as it is for Caucasian people.

Faith then talked about the different types of music interventions that are out there and what the research has a found out, so researchers suggest that people who engage in arts and health problems are at lower risk of dying and are more likely to report good health. This is because the role of art and music in supporting the patient well-being is increased and being recognised.

The way Faith will work on her research is discussing with participants about their memories, thoughts and feelings and about the music. And this will take about 20 minutes. At the end of the nine weeks. She will then carry out that same assessment that she spoke about with the group earlier. She wants to look at the dementia mood and the quality of life. Where Faith will measure the differences.

Faith then arranged a quick workshop session with the group focusing on her project.

  • Dr Sheila Hardy​ presents on Parity of Esteem

Dr Shelia was next to present, she was happy to see our group feedback on the previous presentation. Shelia mentioned her PhD was on physical health and mental illness, where she was trying to show how important it is to check physical health in primary care. Most of her research was about the impact of training the trainers, training nurses and on the health of people with severe mental illness.

Shelia also spoke about her own caring duties as she is caring for dementia. It was tricky for Shelia to present due to her caring role, but we were appreiciative that she engaged with the ethnic carer group.

There is high interest on why people with severe mental illness (SMI) are more likely to have the following, which Dr Shelia presented on:

  • Why those with SMI’s Die prematurely
  • Have a preventable condition – respiratory disease, sexually transmitted infection, sexual dysfunction, obstetric complications, osteoporosis, cancer, dental problems, metabolic disease, diabetes or pre-diabetes, cardiovascular disease, obesity, hypertension, and raised cholesterol
  • Lead unhealthy lifestyles – smoke, eat a poor diet, have low levels of exercise, have a high alcohol intake, misuse drugs, engage in unsafe sex
  • Experience diagnostic overshadowing
  • Be prescribed medication which may have a negative effect on physical health, e.g. antipsychotic
  • Live in poverty

Since this forum is an ethnic minority carer forum. Dr Shelia spoke on the following regarding how SMI’s impacted on ethnic minority groups.

  • In England, there are health inequalities between ethnic minority and white groups, * and between different ethnic minority groups
  • Access to primary care health services is equitable for ethnic minority groups, but less consistent across other health services
  • People from ethnic minority groups are more likely to report being in poorer health and to report poorer experiences of using health services than their white counterparts
  • People from the Gypsy or Irish Traveller, Bangladeshi and Pakistani communities have the poorest health outcomes across a range of indicators
  • Compared with the white population, disability-free life expectancy is estimated to be lower among several ethnic minority groups
  • Rates of infant and maternal mortality, cardiovascular disease (CVD) and diabetes are higher among Black and South Asian groups
  • Mortality from cancer, and dementia and Alzheimer’s disease, is highest among white groups

Half way through Dr Shelia’s presentation there were a few questions where Shelia explained Why people with mental illness have poor physical health

  • Genetics – low HDL, raised blood glucose, low lung function values
  • Poor motivation (due to their mental health problem)
  • Difficulty in concentration and planning (due to their mental health problem)
  • Less likely than the general population to receive support to change unhealthy behaviour
  • Less likely than the general population to receive medical examination and intervention
  • Physical symptoms often attributed to mental health problem so early intervention not offered

Lastly and most importantly Dr Shelia finished up on what actions can help to prevent health problems

  • Engaging in healthy lifestyle behaviours which include:
  • Eating healthily
  • Exercising regularly
  • Getting adequate rest and relaxation
  • Limiting caffeine and alcohol intake
  • Avoiding drugs and smoking
  • Safe sex
  • Maintaining physical personal care
  • Seeking medical care when required

Obviously there are more things that can combat the problem of paraity of esteem, but this is a start to educate others on the challenges.

Dr Shelia Hardy has a book out if interested “Mental Health and Wellbeing: A guide for nurses and healthcare professionals working with adults in primary care“

  • Melanie Crew presents updates from Carer’s UK

Next to present and engage with our ethnic carer group was Melanie who is the Senior Research Officer from Carers UK. She Thanked us for giving her the opportunity to present Carers UK updates.

Carers UK is a national carer’s charity fighing and supporting millions of carers for the UK. They campaign heavily for Carer’s rights and carer awareness.

Melanie spoke on a few updates on what Carers UK have been working on. She mentioned that they have their annual survey running at the moment, which is called “state of caring”. This is where they asked carers quite a lot of questions about their experiences. So it covers issues like “cost of living”, “delays with accessing health care” and other recurring themes like mental health, employment and technology.

Melanie mentioned that it’s really important that they know what carers are struggling with, otherwise they can’t claim to campaign on behalf of people fighting to provide care. Surveys are an important tool because if they are not listening to carers, and asking them what they want or what they need. Then carers will continue to struggle.

Even at the time, they have not had loads of responses, especially responses from ethnic minority carers. So Carers UK are trying to contact lots of different organisations who work with ethnic minority carers, and also try to share the survey with them.

Melanie raised the importance that it would be really great if any of us have the time to go though the survey, as the charity feel that the responses are really important to them.

Melanie then mentioned anothe project that Carers UK are working on called “Making carers count”. This is done in partnership with another national carers organisation called “Carers Trust”.

The project is looking at certain groups of carers that they know less about, so we kind of refer to them as underrepresented groups. This includes carers from ethnic minority backgrounds. So her role in that project is carrying out research which led to a published a research report about the experiences of ethnic minority carers during the pandemic.

Melanie updated on more research, ideas and campaigns from Carers UK, where members got the chance to ask questions and probe about projects. I appreciate Carers UK engaging with our ethnic mental health carers forum and look forward for more updates in the future.

Carers UK is working on a new campaign, if interested see the link below

New Prime Minister must act quickly for unpaid carers

Bromley, Greenwich, Bexley & Lewisham Ethnic Carer Forum April 2022

Hello fellow mental health carers. Have not blogged an update in a while regarding my carer forums. Probably due to being busy publishing my 3rd book on mental health carer poetry. More on that later. I have also been developing online courses aimed at mental health carers. I am now preparing to work on my 6th online course “caring for someone with a mental illness”.

Back to this blog update. This is an update from my monthly ethnic carer forum. A forum for those from ethnic backgrounds caring for someone with mental illness.

Speakers

  • Rev Dr Cameron Langlands – Head of Pastoral & Spiritual Care at South London & Maudsley
  • Carl Nando – Amenity Care update
  • Rubbia Ali – Black families involvement in new elearning.
  • Rev Dr Cameron Langlands – Head of Pastoral & Spiritual Care at South London & Maudsley

Did you know I also facilitate the West London NHS trust ethnic carers peer group? We recently had the Head of Pastoral care visit and engage with carers from the black community.

So it was great to have Rev Dr Cameron Langlands attend and engage with our community group. Dr Cameron looks after the chaplaincy service at South London and Maudsley. Dr Cameron takes care of service users who are inpatients and will often see people in community, but only if they are tied into the SLaM services. Dr Cameron would love to engage with more patients, but there are only three chaplains in the full time role. Plus they have four sites to cover, as well as some community settings.

They also have a part time Imam who works with them on a Tuesday. Plus a part time Deacon who works at ladywell unit over in Lewisham on Thursday.

Dr Cameron has been in the NHS now for just over 20 years in chaplaincy, and what they find particularly within mental health chaplaincy is that when people say they want a specific chaplain, often they don’t. Because they’re looking for is someone who is an appreciation as to where the patient is coming from. That would be who has the ability to sit and listen to them, especially on the difficult situation that they’re in. This is where the nursing staff are trained to do that, but unfortunately, they are often incredibly busy. So that allows those within the chaplaincy team to be able to augment the clinical team and do that.

The team are running a training program for transpersonal therapists who are in training. They focus on more spirituality based transpersonal side of things, and have to do 100 hours within psychiatric setting. So most of the work now has a chaplaincy volunteer as well. They can dovetail into the service.
The other thing they do is that they can offer volunteers in the befriending service that run via the volunteer coordinator as well. So they tie in with people in community who have either been discharged from service but still want that link or are being looked after by their GP or their community mental health team.

Dr Cameron has also asked for a befriender in a new service that runs twice a year, the befriender service is now online, the service can also be accessed in person. The course is ran over a 10 week period and it covers all aspects of mental health.

Dr Cameron mentioned that In South London, they have managed to secure funding from the from NHS England, and have started a bereaved suicide service, which is aimed at those who have been bereaved by suicide, or those who have been witnesses to suicide or attempted suicide. In that team, they have got a bereavement manager, two support workers and a couple of counselors, and they are the only service in the UK to have two community champions employed in that service reaching out to people on non faith based basis.

QUESTIONS FROM CARERS

  • Can there be a conflict on spiritual conversion regarding a patient’s faith?
  • How is spirituality being used as a way to be inclusive and, and bring out these outcomes to be more favorable towards those ethnic communities using those services?
  • Is there a spiritual and pastoral policy? Is it inclusive of families and carers?

  • Carl Nando updates on AmenityCare update

Next was Carl Nando’s turn to update the carer forum on his project Amenity care, which looks to support carers with a package for the person suffering ill health. Carl talked about how Mental health is one of the key pillars for Amenity Care and its clients.

Carl talked about the struggles he had in the past supporting his parents and the racism they experienced. Carl feels this is an issue for today. Carl mentioned how tough it was to provide that care and how it inspired him to set up his own business that focuses on advocacy and support for those suffering ill health.

Carl thinks it is very important to have more black own mental health businesses tailored to the community, but there are struggles and getting access to business support is difficult. There were lots of questions from carer members on how Carl can raise the awareness of black mental health and at the same time run a business.

  • Rubbia Ali presents on Black families involvement in new elearning project

Lastly it was Rubbia’s turn to present to the ethnic carers group. She is a research worker at King’s College London. She spoke about her current study where they just received funding and they are now working on a project tailored to black families. It is called Black families involvement in E-learning. This is being led by two psychologists at King’s College London, by Dr Valentina Cardi and Dr Juliana Onwumere.

The study has two aims. Firstly, to understand the experiences and impact of the COVID-19 pandemic on the carers of children and young people (6-24 years) from Black minority ethnic communities in the UK. The second aim is to explore with carers of children and young people from Black minority ethnic communities, the type of information they would find helpful to include in an online course that aims to offer carers skills to support children and young people with their mental health and wellbeing. The Be FINE study will employ a mixed methods design, using both online surveys and individual and group-based interviews.

The study has two parts; an online survey and focus groups. To participate, individuals have to be parents or carer of a young person from a Black racial minority and the child has to be aged between 6 – 24 years. We then ask that the participant fills out the online survey, this should take around half an hour. The participant will receive £15 amazon voucher for participating. Following this, the participant will have the chance to also sign up to the focus groups.

This concludes the brief update for April – phew! I am so far behind!!

Bromley, Greenwich, Bexley & Lewisham Ethnic Carer Forum March 2022

Welcome to the March 2022 update of my Ethnic mental health carers forum. The forum is aimed at those from a diverse ethnic background who care for someone suffering serious mental illness. The forum also covers areas under South London & Maudsley NHS trust and also Oxleas NHS foundation trust, but forum does allow ethnic carers to attend from other service areas. Just to note, I am also the chair of Carers UK Ethnic or BAME advisory group.

Speakers for my March 2022 forum where

  • Abigail Babatunde – Research Associate on the Advance Statements Project (AdStAC)
  • Karen Edmunds – Head of Equality and Human Rights presenting on Oxleas Equalities projects

Karen Edmund presents on Equalities updates at Oxleas NHS services

Karen felt that after the introductions of members of the BAME group, that Oxleas are in the same place as some other NHS trusts are in terms of carer involvement, but she admitted there is more work to do. Karen talked about how they are developing what’s called an “Involvement hub”, which is been led by Jacqueline, who’s Oxleas NHS assistant director of involvement with her team.

Karen feels there has been reasonable amount of service user involvement, where people work with experienced practitioners, but when it comes to carers and community organisations, there is a lot of work to do and they haven’t been quite maybe quite as good as some other NHS Trusts out there.

Karen spoke on the following topics on what Oxleas is working on regarding equalities.

Workforce Equality:

  • Workforce Race Equality Standard (WRES) -reporting and annual action plan
  • Workforce Disability Equality Standard (WDES) – reporting and annual action plan
  • Supporting our five staff networks (BAMEx, Disability, LGBTQ+, Mental Health, Women)
  • Building a Fairer Oxleas (BAFO)
  • Policy development
  • Enquiries related to workforce equality

Service User/Patient and Carer Equality

  • Accessible Information Standard (AIS)
  • Policy development
  • Patient complaints related to equality issues
  • Manage the Interpreting contract
  • Manage our multifaith chaplain + Chaplaincy contract with Lewisham and Greenwich Trust
  • Service User Inequalities Group (new)
  • Patient and Carer Race Equality Framework (new)

Staff and patients / service users / carers

  • Equality Delivery System 2 (EDS2) annual report
  • Public Sector Equality Duty
  • Equality and Human Rights Policy, Equality and Diversity training
  • Freedom of Information requests related to equality

Lastly to enable Oxleas to become an early adopter of the Patient and Carer Race Equality Framework (SLaM have been involved in the pilot phase)

Karen then spoke about building a Fairer Oxleas Delivered actions Year 1

Improving cultural competency:

  • Cultural intelligence and inclusive leadership training for the Executive team and 50 senior managers
  • Inclusive leadership workshops open to all managers
  • Comfortable talking about race workshops open to all managers
  • Living our values training for managers to deliver a values session with their team
  • ‘In Each Other’s Shoes’ film about microaggressions, plus a guide on microaggressions
  • Team talks to show ‘In Each Other’s Shoes’ and discuss it
  • Building a Fairer Oxleas section on the Ox (our intranet)
  • Race Resource pack with articles, short films, and useful links to external resources

The outcome will look to improve all experiences of their Black, Asian and minority ethnic staff, which will help improve the experience of Black, Asian and minority ethnic service users and carers

Karen explained The NHS Race and Health Observatory review February 2022 found that:

Ethnic minority groups experienced clear inequalities in access to Improving Access to Psychological Therapies IAPTs; overall, ethnic minority groups were less likely to refer themselves to IAPT and less likely to be referred by their GPs, compared with White British people.

Evidence was identified for inequalities in the receipt of cognitive behavioural therapy (CBT) with ethnic minority people with psychosis less likely to be referred for CBT, and less likely to attend as many sessions as their White counterparts

The review provided strong evidence of clear, very large and persisting ethnic inequalities in compulsory admission to psychiatric wards, particularly affecting Black groups, but also Mixed Black & White groups and South Asian groups.

There was also evidence of harsher treatment for Black groups in inpatients wards, e.g., more likely to be restrained in the prone position or put into seclusion.

More bad news was on how black children were treated in the NHS

Parents reported their children facing the same barriers to accessing services as reported for adult mental health services. Two studies of young Black men showed that they were deterred from seeking help by their knowledge of injustices in mental health services relating to Black Caribbean and Black African populations. Two large national studies found that ethnic minority children were more likely to be referred to CAMHS via social services, education or criminal justice pathways. This was particularly stark for Black children who were 10 times more likely to be referred to CAMHS via social services (rather than through the GP) relative to White British children.

Karen then talked about Oxleas new Service User Inequalities Group

She then moved to its aims which was to explain that it will help deliver Oxleas’s strategy on service user access and inequalities

This will be done by looking at their data on the ethnicity, disability, gender identity, religion, and sexual orientation of patients compared to the local population which will lead to clear actions to tackle inequity of access, experience and outcomes.

Karen the talked about how Supporting Oxleas staff to deliver inclusive care on Proposed actions to tackle inequalities

This is on how all services have a generic email for patient contact to provide an alternative to phone contact Clear information in a range of formats in plain language on what each service provides, referral criteria, and how to get access Disability access guides to key sites available on public website.

Oxleas NHS will be an early adopter of the Patient and Carer Race Equality Framework Engagement with local communities and use this feedback to target service development where it’s needed most Scope care pathways where we can pilot inclusive assessments, factoring culture, ethnicity, disability, sexual orientation and gender identity Patient experience data by protected characteristics will be routinely produced, analysed and reviewed by services to identify differences of experience and then plan actions to address these.

Questions from Carer members

  • You shown what Oxleas are doing for CAMHS and Adult service, but what about older Adults?
  • Its an interesting and important presentation, but I am wondering why a white woman is presenting on equalities regarding disadvantages of black people, does Oxleas employ representing the communities it serves?
  • With the impact of COVID on ethnic communities, what does Oxleas have in place to reduce the impact?
  • I am interested in how Oxleas are going to work with the Patient Carer Race Equalities Framework, arent Oxleas service area’s mainly white?
  • Lastly a question from myself is I do not see hardly any ethnic patient/carer grassroot groups that Oxleas is able to engage with. How will ethnic patient and carer groups be empowered so they SEEK engagement and hold Oxleas accountable on services to ethnic communities?

Abigail presents on the Advance Statements Project (AdStAC)

Abigail spoke on how South London & Maudsley are working to promote advance statements for Black and African, Caribbean people. This is because of the high detention rates and especially with black people being more likely to be detained under the Mental Health Act.

It is important to promote why having to work with staff service users, and carers and supporters to understand how to get advanced choice documents or advanced statements can work for black people.

Bromley, Greenwich, Bexley & Lewisham Ethnic Carer Forum February 2022

Welcome to a brief update of my february ethnic mental health carer forum. As usual the forum is an engagement platform for those caring for someone suffering mental illness from an ethnic background. I run the forum via zoom with the support of several mental health trusts.

Speakers at my carer forum for February were

  • Lisa Fannon the Public Health Training and Development Manager for Lewisham updating on Health inequalities
  • Ellie Wharton Senior Project Manager for Health Innovation Network
  • Engagement from the Police on mental health
  • Lisa Fannon presents on health inequalities project

Lisa wanted to update us on the health inequalities project. Since last month there was a discussion with KINARA who attended and talked about the work that they are undertaking in the community, specifically around the Birmingham and Lewisham health inequalities review that is being undertaken with the African and Caribbean communities.

That work has now been concluded and she has received a report. Lisa hopes that they will be able to launch all of that information with an event that’s taking place soon. Lisa reminded that some of us may have received the invite to that event already, but she wanted to ensure that as a community group that we were aware what is happening.

The event will be overseen and organised by Public Health Lewisham. They will also plan to have a additional event following the one just mentioned and it will specifically be for community members. This will be essentially a second in series of events around health inequalities where they are aiming to bring together community groups, and members of the health and social care and health and social care leaders talk about health inequalities. Lisa wants this to be done in partnership with the health and well-being to address health inequalities in Lewisham, and bring together everybody to discuss the situation.

There of course will be opportunities to look at some of the achievements of this work, but also to discuss further action on what needs to be done to tackle health inequalities. Lisa mentioned they will look at what kind of plans that they are hoping to undertake across this year and what future needs is happening at the event.

The event will run in the evening at a Community Centre, where she has sent in advance of this meeting, information about the event to Matthew.

  • Ellie Wharton presents on the Health Innovation Network

Ellie wanted to tell us about the mental health patient safety network event, which is part of their mental health safety improvement programme. Ellie apologised for the acronyms flying around on the programme, but thanked us for inviting her to join and speak at our ethnic carer group.

Ellie agreed with some members that health inequalities is such an important topic, which is why they have chosen it for their second event to focus for the safety network. Ellie talked about what the Health Innovation Network is, which is an Academic Health Science Network (AHSN) for south London, one of 15 AHSNs across England.

The AHSN exist to speed up the best in health and care. They have been commissioned by NHS England and Improvement to focus on Mental Health Safety. Which involves developing a Safety network and supporting quality improvement work in certain areas (such as restrictive practice).

Their principles are central to how the programme runs:
• co-design with people with lived experience
• Creating shared learning, connection and Joy
• Foundations of systematic QI
• Engaging with inequalities where they exist
• Working with their foundations and all the good things that already exist

Ellie then pointed out a member of my ethnic carer forum and stated one of the members was involved in the event. This is when the carer member spoke on her section regarding health inequalities and carers.

Ellie then talked about the mental health safety network.

The network is an interactive designed to bring together individuals across the system with the shared goal of improving mental health safety it is co-hosted by the HIN and the 3 south London Mental Health Trusts (South London & Maudsley NHS Trust, Oxleas NHS Trust and South West London & St George NHS Trust). It’s purpose is to create value through sharing learning, creating connections and building energy and capability in safety improvement

The event welcomes people who share the MH safety network’s goals of improving mental health safety. Registration is open to people with lived experience of mental health services, including carers, clinical and managerial staff from NHS, independent and private health and social care providers, commissioning leads, local authorities, voluntary sector partners, police, emergency services and other system partners.

Ellie then talked to us about the agenda of the event.

  • Mental health Police engagement from South London

The forum gets engagement from the police every now and then. This is mostly because the police have an interest in mind while helping those in a crisis, they want to connect and reassure carers. The police talked about what sites they cover this being Sutton, Croydon and Bromley although its quite a small team.

Their main sort of role and objectives is being a direct liaison with the NHS and mental health trusts. There are other objectives dealing with assaults against NHS, racial assaults against NHS staff where the perpetrators is having mental health issue.

The police then talked about section 136 and how they have been dealing with a lot of escalations. The police think the section is being overused. They think there’s things that they can do as a team to prevent that. There was also some talk about what they can do to help with people out in the streets dealing directly with mental health issues.

The police try and get out and about to the hospitals as well. They have got a police liaison officer that works at the hospital and who deals with crime at other Hospitals.

In a nutshell the police work directly with mental health patients once they were coming into contact with police.

Bromley, Greenwich, Bexley & Lewisham Ethnic Carer Forum January 2022

Welcome to the first ethnic carer forum of the month. My carer forum has expanded to cover south London with support from Oxleas NHS trust and South London & Maudsley NHS trust. A quick comment about the forum is that it bring together families and unpaid carers looking someone suffering mental illness. We seek engagement, information and a way to be involved or learn the challenges of mental health care.

For January 2022 speakers we had the following speakers.

  • Lisa Fannon, Barabra grey – Public Health Training and Development Manager
  • Natalie creary – Black Thrive Lambeth – Research regarding young people
  • Jackie Peat -​ Lewisham Diversity and Equality Lead
  • Sheena Wedderman – Culturally Diverse Communities Project Manager
  • Lisa Fannon presents on BLACHIR

Just to note BLACHIR stands for Birmingham and Lewisham African & Caribbean Health Inequalities Review

Lisa updated us on how Lewisham and Birmingham City Council are working across both Lewisham and Birmingham to focus on African and Caribbean health inequalities. Both of areas had worked previously looking at health inequalities across the board. One of the projects was on the childhood obesity program, this was during pandemic at the time, and around November, given the impact of the pandemic.

What was interesting was the impact of the lockdown and how things started to be immersed for the vast community. The group came together to look at focusing on how they could collect knowledge to support looking at how health inequalities had been an issue. Even though health inequalities have existed for decades, the project looked at trying to bring them to the forefront, which would lead to a report that could be shared nationally.

As part of that process, Lisa explained it was important to bring that information from a lived experience process within the community. This would also include the wealth of knowledge from academics across the country. The knowledge would be on the experience specifically on health inequalities.

Lisa explained that they are now working in different phases for their research, to promote and focus on information regarding health inequalities for black communities. This required a rigorous process in 2020. Where Lisa actually came to the SL&M board to talk about how they were recruiting people to take part in this process. So basically, they recruited a range of academics, from black communities who were working specifically on health inequalities.

Lisa mentioned they also put a call out to community members in Birmingham, asking them to come forward on a voluntary basis, in order to provide their experience on a range of things that they felt were were important to focus on.

What is BLACHIR?

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Barbara Grey presents on KINARAA

Next it was Barbara Grey who presented some information about KINARAA and its aim is to grow the black third sector, and diversify the marketplace and ultimately improve access and well being of black, African and Caribbean people. It’s very specific, because that’s where the need is, and its focus. This is with the ethos is around collaboration.

This is where it brings together black led organizations to do what only they can do. During the first lockdown the determination showed what can happen when people come together. Another person at the forum involved in KINARAA explained that it’s just like magic to watch in terms of seeing how everybody comes together. They know what the issues are, they bring their expertise, they know exactly what the solutions are. In the end it’s a bit like a jigsaw puzzle. People just got this amazing work that goes on, which can lead to a strategic voice.

Click website link to find out more about KINARAA

Barbara Grey mentioned that she has worked with many people out there in the community. She felt that it’s really good to see because there are other types of initiatives including the “Patient Carer Race Equality Framework”. There needs to be a focus on black leadership on health inequalities and how communities can work together.

As a result of that they have done there are now four organizations who have done amazing engagement where they’ve done focus groups, one to one interviews, and there are also surveys that just gone live. At the time of the forum there are over 70 people have responded to the survey that went live. The responses are covering the borough quite well in terms of where you’d expect to see African and Caribbean people. So it just goes to show that if you want to reach people, plus if you’re working with people who’ve got the relationships where you’ve got the expertise, and you just bring it all together in the right way. It will just happen. And the results that you will get back is pretty outstanding.

Stakeholder feedback on partnership

A stakeholder involved in the KINARAA project responded that its all about a partnership and collaboration with organization. For them, it was actually driving hard at the work, time was a challenge because it was short, but it did not put them off because they were excited to be involved on this kind of work.

This was something special to them because for them they are a small organization, they are looking at the pathway to raise their voice, because in the end it is them who are the first point of accessing people to access the services.

So the process that has been undertaken, as part of that review is that as the review team, those colleagues involved in Birmingham and themselves will pull together evidence, work with researchers and commissioned researchers to come together and give reports on specific areas of health inequalities. They will share that information with academic board members who are around 15 academic board members that are also taking part in a review. They will then look at the evidence as they come to a meeting, or provide their information on how they feel that these health inequalities are impacting.

Natalie Creary presents on Black Thrive Lambeth

Natalie explained that as an organization called “Black thrive”, their work sort of started in the London Borough of Lambeth. Following a commission from the black health and wellbeing commission, and that was undertaken with other communities and other stakeholders. They came up with 40 recommendations to narrow the inequalities gap for black people. This led to Black Thrive being born. It was established to kind of be an independent entity that holds the system to account to be able to move forward on the health agenda of black communities.

Natalie continue that they looked at addressing mental health and equality, thinking about the social determinants of health. Natalie mentioned that they have been an independent entity for about many months now. So they are actually officially black led organization. They are currently working with many partners to explore how we can influence the social emotional wellbeing offer for black children and young people.

It was mentioned that they actually got a project currently where children in need, will co-design the criteria for a fund, which will then fund primarily black led interventions to address the mental health and well being needs for for black people

Sheena Wedderman on her new role in Bromley Lewisham & Greenwich Mind

Sheen’s explained her job role as the culturally diverse communities project manager. The role came around from a piece of research in relation to the young people of color, and diverse communities going in and out of hospitals. What was found was people from diverse communities that are entering mental health settings usually experience crisis levels that rise quite quickly. Such people are sectioned in secure wards, being medicated and often staying far too long on those inpatient wards. Then they end up coming back into the community with a really negative experience of mental health services. This in turn leads to experiencing even more mental health challenges, where they would re-enter the system at crisis level, go back into hospital, be medicated and stay too long, then coming out and not trusting the system and not getting the service that they actually deserved needed.

Sheena then talked about her focus on information that were born out of that piece of research. The what the info aims to do is to look at what the barriers ethnic people are experience, why are people waiting until they get to crisis levels to access services, but more importantly, how we can prevent them from getting on the carousel of going in and out of hospital; being medicated and coming back out in order to going back in.

She felt people need to be supported by the communities that they live in, in order to improve their mental health. So the new project basically decided how they were going to get some funding and look at how they could support people in their local community.

Bromley, Lewisham & Greenwich Mind are looking at putting out to tender for more community care support workers, who are going to be based in and around community groups. They will provide a service that identifies who in the community needs that support. This is so if at any point there is an issue with their mental health, then these organizations or these local organizations will support the people accessing those mental health services

Jackie Peat presents on her role as Lewisham Diversity and Equality Lead for SLaM

Jackie who is now SL&M’s (Lewisham) diversity and equality lead, was brought into this role 2021. This was to come up with recommendations regarding staff concerns over equality where support came from the CQC, NHS England, the board of directors for slam.

The problems were a lack of opportunities for any black staff to move forward to go up the ladder, or actually sit on the boards. Jackie felt it was a shame that she had to go through some challenges, even though she just wanted to be heard. Eventually a subgroup was formed in January 2021, which led to a subgroup being formed, which she co-chaired at the time. The sub-group led to recommendations where many items need to be met.

Basically ethnic staff just wanted a safe space to speak. Presently there has been a lot of promotion are the trust are doing to look after our black staff etc etc. Jackie still feels there are many challenges to work through, but there are many positives.