Welcome back to another blog post by carer activist Matthew McKenzie. Since I run an ethnic carer group, I wanted to promote Black History Month. Black History Month is celebrated in both America and UK, although the UK promotes Black History month in October.
There are 2 themes for Black History month one being “African Americans and the Arts”, the other being “Reclaiming Narratives”. I decided to go for the first theme, but did a mention on how the UK celebrates Black History Month.
Here are the highlights of my video.
🎨 Black History Month 2024’s theme is “African-Americans and the Arts.”
🌍 Celebrates the impact of African and Caribbean heritage in British history.
🏛️ Encourages exploration of Britain’s colonial past and migration.
🎶 Highlights the influence of black Americans on music, especially jazz.
📚 Black History Month aims to educate about interconnected histories of Britain, Africa, and the Caribbean.
🏢 Calls for action from governments and institutions to embrace diversity.
🤝 Stresses that these stories are part of everyone’s history, not just black history.
If you are interested to watch my video please via the view below.
Thanks for dropping by my carer blog site. For those interested I am doing a Black History Month event with Carers UK. This will take place October 16th at 4 pm via zoom
Welcome to an update of my ethnic carer group. The group focuses discussions, updates and presentations regarding those who care for someone living with mental illness. The group has become national a while back due to supporting “Carers Trust” triangle of care and the new NHS England Patient Carer Race Equality Framework.
Here is a brief update of my national ethnic carer forum.
Quick recap
Linda From West London Health NHS Trust discussed PCREF updates, focusing on supporting patient care and amplifying the voice of service users, communities, and carers. We also was joined by DR Eula Miller a senior lecturer at Manchester Metropolitan University. She shared her two-year project exploring the experiences of minority families accessing and engaging with mental health services, and her work in engaging with black churches in the Greater Manchester area to address mental health issues and myths.
Lastly we were joined by Deepa presented a report on the work done from Healthwatch Greenwich, highlighting the need for culturally sensitive approaches to support carers from ethnic minority backgrounds and developing culturally relevant resources.
West London Trust Collaboration and Feedback
Linda discussed her work with the West London Trust, focusing on supporting patient care and amplifying the voice of service users, communities, and carers. She mentioned that they have been working together since February or March and have conducted several listening events. Linda also discussed the progress of the patient and carer race equality framework, emphasizing the need for better communication and feedback loops. She encouraged participants to share their thoughts or questions and proposed a separate meeting for those who wanted to be updated in detail. Linda agreed to work on improving the communication of updates and developments. Other members expressed enthusiasm for a recent presentation, describing it as “very, very, very riveting,” and requested a simplified version of Linda’s PowerPoint presentation.
South London NHS Trust Advisory Group Discussion
A carer member of the group expressed interest in the work of the South London and Maudsley NHS Trust’s Equality, Diversity, and Inclusion Advisory Group and requested Linda’s contact details for further conversation. Linda agreed to share her contact details and promised to have a separate conversation with the carer. As Chair of the forum, I then introduced an attendee from Oxford Health NHS trust who had missed the beginning of Linda’s presentation. I mentioned that I would send off any slides or handouts from the meeting for members to digest. The meeting then proceeded to the next speaker, Dr. Eula Miller, who discussed her interest in mental health care and her role as a nurse educator. Eula also mentioned her goal of influencing future practitioners to better engage with carers in the community.
Exploring Mental Health Service Experiences and Themes
Dr Eula discussed her two-year project exploring the experiences of families accessing and engaging with mental health services. The project involved individual conversations and focus groups, and was particularly relevant during the Covid-19 pandemic. The themes that emerged from the project were categorized into four areas: “If only someone had listened,” “Not knowing,” “Drowning in misunderstanding,” and “What can we do differently.” Dr Eula highlighted the consequences of not being heard, such as loved ones being admitted in crisis situations, and the impact on carers’ health and trust in services. She also noted the participants’ proactive response, forming a self-help group to share knowledge and support each other. Eula’s presentation was well-received, with several attendees expressing interest in her research and seeking further information.
Dr Eula shared her work in engaging with black churches in the Greater Manchester area to address mental health issues and myths. She has been visiting churches, providing information, and linking them to mental health workers. Eula also mentioned her work in educating future nurses on how to assess mental health issues. She offered to share her full report with attendees. I thanked Eula for her work and encouraged others to ask questions. A member from Integrated Care Board expressed interest in reading the full report and potentially replicating Eula’s work in Greenwich.
I also asked Shenade a Wandsworth Carers centre representative about her experiences with minority carers and mental health services. Shenade shared her experiences with the Bridging the Mind Project, highlighting the need for culturally appropriate information and support. A carer attendee of the group praised Eula’s presentation and emphasized the importance of collaboration and information sharing in providing effective care.
Building Cultural Sensitivities and Community Engagement
A carer attendee expressed her appreciation for Eula’s presentation and acknowledged its relevance to her upcoming work. Another attendee shared her experiences with strengthening cultural sensitivities and the importance of reaching out to diverse communities. She suggested using peer ambassadors and faith leaders to build trust and facilitate communication. Eula agreed, emphasizing the need for collaboration and understanding among different groups. Another professional shared a personal experience of a patient being misjudged due to her religious practices, highlighting the need for education and understanding among staff. The group agreed on the importance of educating staff and engaging with diverse communities to promote fairness and understanding.
Addressing Mental Health Challenges in Minority Carers
Matthew McKenzie then asked and Deepa from HealthWatch Greenwich to discuss the challenges faced by minority carers struggling with mental health issues. Deepa shared her team’s research findings, highlighting the need for culturally sensitive approaches to support carers from ethnic minority backgrounds. She noted the evolving role of carers, the challenges they face, and the importance of clear information about their rights and entitlements. Deepa concluded by presenting recommendations for improving support services for black and ethnic minority carers in Greenwich, including a comprehensive review of existing services, enhancing community engagement, and developing culturally relevant resources.
This concludes my update of the National ethnic mental health carer forum. See you next month. Please video my carer awareness video regarding minority carers.
Welcome back to another blog post by carer activist Matthew McKenzie. I raise awareness of caring for someone with a long term illness.
This time I want to bring to attention something close to my lived experience of a carer. It is important in a multicultural society that we have health and social care for all. The health service cannot cater only for one specific need. The health system must reflect its community.
Carers from Black and Asian demographic tend to face their own unique challenges when supporting someone through the health system. Language problems, Biases, cultural misconceptions, alienation and even racism.
No one can now deny there is and always has been elements of discrimination through established health systems. Such predjudice has always been lurking behind the community and now due to the riots, it has raised its head. We now need to focus on unpaid carers from that background even more.
We must support our diverse community of carers, not because it is the right thing to do, but because it will benefit us all in the long run. It all starts with education and engagement. We need to all care about health and social care, because that how we change things.
Please check out my You Video below for more about minority carers
Been a while since I have done a blog to update the carer forums and groups that I run. I thought to avoid the summer heat and stay inside in order to provide a brief update of the National ethnic mental health carers group for July.
The agenda for July was support from Carers UK who are a national charity fighting for the voice of unpaid carers in the UK. There are millions of carers providing care and support for someone with long term illness. This includes minority carers.
Carers UK presents on the Impact of caring.
Carers UK examined the latest Office of National Statistics and how those figures showed the impact of caring. It is good to get an overall picture of caring through the country.
For the ONS census of 2021 – The Office for National Statistics showed
There are an estimated 5.7 million carers in the UK
1.8 million care for 9 hours a week or less
1.5 million care for 50 hours a week or more
Every day 12,000 people in the UK become carers
Carers UK provided some information aimed at those caring for someone with mental illness. This was that not everyone with a mental illness needs a carer, and not everyone who needs a carer has one. People with mental illnesses have lots of different needs like anyone else, and these will affect the support they need.
Early last month I did a joint talk with someone from Mind who are a charity that focuses on support for those with menta illness. Carers UK reminded members of the forum about the resources Mind has on their website.
Carers UK were also kind enough to speak about the impact of caring on minority ethnic carers. Carers UK presented how experiencing mental health issues, may make the caring role even more challenging. Rates of mental health problems can be higher within some Black, Asian and ethnic minority groups, as a result of racism and discrimination, and social and economic inequalities.
Carers UK also noted that experiencing prejudice, discrimination or harassment when accessing services can lead carers feeling distrustful of support services as a result.
This can also be down to struggling to obtain information and advice due to language barriers, plus not having the opportunity to shape and influence health and social care services. Some carers may feel that they have no ‘voice’ in the system, and feel unable to complain or raise concerns about services
Carers UK give a wealth of information and resources aimed at unpaid carers and those who support carers. Carers UK representative Zahra presented some of the amazing resources that carers can use.
Update from members of the group.
As usual the national ethnic mental health carers group supports the NHS England framework, which is the Patient Carer Race Equality Framework. The forum provided space for carers involved at their NHS trust to update. We had updates from West London Health trust from their recent PCREF listening events.
We also had an update from Wandsworth talking therapies, where they updated on the recent “Bridging Minds” forum and how the community of Wandsworth provided feedback their experiences on the impact of racism and discrimination. I also managed to attend the forum, which was supported by Wandsworth Carers (see poster below).
There was an update and engagement from Oxleas on their focus for ethnic minority carers, but there is still more work to do. Other updates were from carers involved at Cambridge & Peterborough NHS trust and also Kent & Medway NHS trust, plus Cygnet who is a provider of mental health services.
For the forum on the 30th of August, we will look at the topic of carers rights.
Welcome to a brief update of my ethnic mental health carers forum. This is the January 2024 update where the forum focused on updates from mental health NHS trusts. The update was specifically on the new equalities initiative from NHS England, which is the Patient Carer Race Equality Framework. (click on picture below to zoom in)
As of 2024 the mandatory framework will support NHS trusts and providers on their journeys to becoming actively anti-racist organisations by ensuring that they are responsible for co-producing and implementing concrete actions to reduce racial inequalities within their services
Usually for my ethnic mental health carers group, I focus on things outside PCREF, but since PCREF has a heavy focus on minority voices, my group looks to engage with NHS trusts and their PCREF ambassodors on updates. A special note is the group is interested on how minority carers are being identified and included.
I am aware many NHS mental health trusts learn from each other so for the January group we had the following attend and present
As usual I brought in a special guest speaker from Middlesex University to speak about the following topic which she published in The Practising Midwife for the 2023 edition in November. Kristina spoke about “Mental Health Context for Minoritised Ethnic Individuals” and was specifically interested in why Perinatal birthing minoritised ethnic women and people suffer from poorer outcomes. Just to note, Krishna is not a mental health nurse, but a nurse under midwifery at University College London Hospital. She also teaches Midwifery at Middlesex University.
NELFT PCREF Presentation
Before we move onto Kristina’s presentation, the ethnic carer forum opened with a presentation from Asia Zaman who is the Transformation Project Manager for PCREF at North East London NHS FT. She was joined by Tarek Seeraullee who is the Havering Carers Lead at NELFT.
NELFT NHS has taken strong steps to not only incorporate PCREF, but also align it towards the hospitals carers strategy. The NHS trust presented that they admit their patients and carers have poorer outcomes, but things will improve through the following drives and more.
Upcoming workshops and events (increase cultural awareness) – carer led, to understand further about needs, perspectives etc.
increase Staff Knowledge and Awareness) – Develop workshops carer led, to share knowledge and awareness.
Increase Partnership Working – Task and Finish group- carer led, Havering best practice example? NELFT to consider aspects across all directorates.
Co-production – Carers group NCV-NELFT CarersVoice has been set up andrunning, for adults and young people.Workstreams in progress.
Presentated was 10 PCREF competencies where the carers strategy was aligned. We then had a Q&A session from attendees some carers were also from NELF.
SWLSTG PCREF Presentation
It was kind for South West London & St George to attend and present their focus on PCREF. This section was presented by Tom Carter who is the Peer Involvement Coordinator, Involvement Team. I know SWLSTG NHS trust fairly well as I have been hosting a carers peer forum for 4 years. My carers group in SW london covers the same areas as the MH trusts being Sutton, Merton, Richmond, Wandsworth and Kingston.
Tom presented the focus for PCREF at the NHS organisation, however we did have a few attendees from the area interested in the focus on ethnic minority carers. This is because they saw the presentation from NELFT and did not wanted to be left out. There was specific interest from Wandsworth carers centre and a few others.
On a side note, the mental health trust has developed a new induction video, which you might want to view below.
Kristina Goh presents on Mental Health Context for Minoritised Ethnic Individuals
As mentioned earlier, I was joined by Kristina to talk about her publication on why minorities groups giving birth had poorer outcomes. The group cannot always restrict itself to mental health NHS services as the equality challenge is presented in all other health sectors include acute services.
Kristina presented that one of the leading causes of maternal death antenatally and postpartum is mental ill health (10-20% of women).
Kristina mentioned that poorer outcomes could be challenged with the following.
Cultural competency training for healthcare professionals Cultural competency vs cultural humility Workforce needs to be reflective of the population we care for- think outreach, retention, development opportunities Non-pharmaceutical interventions
KMPT were very kind to engage with the ethnic MH carer forum to update us on their progress. We were joined by a number of Kent & Medway presenting their focus although time ran out before CNWL presented on their drive to include the Patient Carer Race Equality Framework.
CNWL, South London & Maudsley, plus Oxleas NHS and NHS England will update in February.
This concludes my brief update for the Ethnic mental health carers forum January 2024.
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
Application form completed and sent to our Involved Network
Applicant informed of bid outcome
Transfer of funding arranged
Activity takes place
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.
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.
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.
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
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.
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.
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.
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
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 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.
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 outSLaM 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
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.
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.
A Caring Mind 