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.

Carers Trust 50 years of caring event

Welcome back to another blog post by carer activist, author and poet Matthew McKenzie. I just thought to do a quick blog about an exciting and important event I attended last night.

Carers Trust a national charity to promotes and supports unpaid carers have reached an important milestone. It was their 50th Anniversary and to celebrate that milestone, the charity held their event over at the Old Bailey.

I have never been to such a pretigous building before and I am still wondering how on earth Carers Trust managed to hold their event there. The event was a drinks reception along with important speeches as to why Carers Trust fights so hard for carers. Do you remember the TV soap drama Crossroads? If you do, then you might remember a particular 1973 Crossroads theme regarding someone caring after a car crash. This led to viewers sending mail about their thoughts and experiences, which in turn led to a national drive on support for unpaid carers.

You can watch a short video below showing the history of Carers Trust

The beginnings of Carers Trust was explained in detail by Angela Rippon CBE who was a guest at the drinks reception. Her lived experience, knowledge and drive to battle for unpaid carers was an inspiration.

The event was hosted by Sheriff Alastair King who opened the event. We also had speeches from chair of Carers Trust John McLean OBE and CEO of Carers Trust Kirsty McHugh. I admit I have never met Kirsty before, but she has lots of energy and dashes around very fast.

At the event I was introduced to those who also championed the role of unpaid carers. Rohati Chapman Exec Director at Carers trust was an excellent host and made me feel welcomed.

The speech by young carer, Aditya Akella was exceptional as he mentioned the themes that are important to young carers. A lot of the themes I often present regarding talks I do about my books. The most important is carers do their role out of Love including other things.

As I wandered around the drink’s reception, I could not help be taken in by the hall. The old Bailey is majestic and historical. The importance of justice, fighting for others and of motto’s etched on the walls require some serious investigation. There is a lot about the place I still do not understand, but reflecting back, the building holds a significant reason as to why people fight so hard for what is important to the community. I am not a barrister, Laywer or Judge, I am just a simple carer activist, but deep down I feel the Old Bailey actually wanted the event to be held there. This goes double to those who take the time to fight for the vulnerable.

I am aware that as a majority we still strive to do what is right, but because some roles are done for free, there are people who feel there is not much value in such roles. A just and civil society should try to value those sacrifices, because in the end it is what sustains the community.

All in all, I enjoyed the drinks reception and I wish Carers Trust success in the future.

World Social Work day 2023

Welcome back to another carers blog by Matthew McKenzie. It recently was World Social Work Day, which took place on the 21st March 2023. The theme for 2023 World Social work day was ‘Respecting diversity through joint social action. Social workers are very important if you are caring for someone. It helps to get that extra support regarding your role as an unpaid carer.

Social workers are becoming a rare resource these days, so it is important to raise awareness of social workers. It is also important to value them. World Social Work day allows social workers worldwide stand together to send the common message of relieving people’s suffering, fight for social justice, and improve lives and communities.

Social works help people with health, psychological or social problems. This in turn builds healthier communities. It was fortunate I was allowed to present at South London and Maudsley NHS Foundation Trust World Social work day event.

The event took place at Maudsley’s conference centre “Ortus”

The event organisers used the theme on learning from the voices of service users and carers in mental health social work.

We had some great speakers from that event. A special mention to Jo Lambert and her mental health focus. You can check out her books in the link below.

Recognition Project

I started off my presentation on what I feel was the importance of world social work day. Of course I asked the audience what they thought about the awareness day. I then read a poem from my book “The Poetry book of mental health caring”

You can see my presentation from my video below.

The poem I read was called “My Story”

I then told how my carer’s journey unfolded and how Social workers worked with carer and service user.

How did Social workers helped my role as a carer?

I explained to the audience that it was important that social workers are knowledgeable of the services and explained them to my mother and myself.
Some social workers saw me as an asset. Some social workers saw me as part of a support network helping to support my mother.
It is important social workers use psychology to help heal. Some social workers talked about what can be done, rather than what could not be done, so constantly providing a positive focus.
One of the most important roles of a social worker is explaining about carers assessment. The carer’s assessment is an important tool for a carer to learn more about their needs.
Lastly referring me on to carer support was invaluable

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All in all the NHS Maudsley gave me a powerful voice to promote my voice as a former mental health carer. I hope awareness of social workers continue to grow

Young Carers Action Day

Welcome back to another blog post by carer activist and author Matthew McKenzie. Only a few days until Young Carers Action day 2023, which will be on wednesday 15 of March. Young Carers Action day is an annual awareness and campaign event run by national carer’s charity Carers Trust.

If you are not sure what young carers do. They look after someone in the family unpaid and will have to cook, provide housework and even do shopping. It is not those tasks alone, young carers from the age of 5 can even provide physical care or emotional support. Young carers might even have to advocate for the person they care for or even help communicate for the ‘cared for’.

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If you wish, you can check out my video on Young Carers Action day from my YouTube site below.

With all the tasks mentioned above and more, it makes sense that the theme for YCAD is “Make time for young carers”. It is important young people get the time for themselves since their role can be very demanding and caring for someone often comes with sacrifices. Later in life, people might have a choice in the care they provide, this cannot always be said for young carers who miss out on many opportunities. This could be in making friends with those at school, or missing out on education and skills training. When caring for someone, if you do not get a break then your own wellbeing is at risk.

So it is important young carers have access to breaks and are able to be identified early. When I was young, I did not know I was a young carer, so Young Carers Action Day helps raise awareness to young people who are caring. Once they know they are carers, then it is easier to ask for support and to ask to be identified.

Carers Trust want several things to happen for young carers.

improved support in schools
more access to breaks,
better access to counselling support
and more financial support.

If you want to help spread the message, check out Carers Trust resource pack from the link below

Carers Trust YCAD Resource Pack

Review of Kingston – Real Estate Poetry Project

Welcome back to another carer blog by Matthew McKenzie

It has been a while since I did an event review. To be honest I ought to be attending a lot more events, especially things to do with mental health awareness, carer awareness or even book conferences related to my content.

Well you are just in luck, I recently was a special guest poet at the ‘Come Rhyme with me’ series of creative writting workshops. These workshops are hosted by award winning poet Michael Groce. The event was brought together by Voluntary Action Kingston.

There often can be fast paced changes in the community, some positive and some bringing changes which causes people to be isolated. Ethnic communities can often feel isolated, so it helps that there are ways to help people use their voice in ways that are powerful.

I have always found poetry to be powerful. The creative writing workshops are held in the Cambridge Estate over in the London Borough of Kingston. I found at the event all were welcomed and the community in the borough of Kingston are talented and passionate about their experiences.

You can see my poem from the video below.

If you are from the borough of Kingston, you can book on the event below.

Focus Group Recruitment- African-Caribbean older adults

Depression is up to 60% higher in people from ethnic minorities than white people. There is also variation in the healthcare management of mental health conditions according to an individual’s ethnic background. The extent to which variation in access to treatment options for mental health conditions impacts on quality of life is not well understood. Therefore, the aim of the focus group is to explore the perspectives of Afro-Caribbean people with a mental health diagnosis on access and delivery of care.

There is research looking to recruit 10 people of African or Caribbean descent with a mental health diagnosis (and carers of those with a mental health diagnosis (who themselves are Afro-Caribbean)) and are over the age of 50 to explore their perspectives on the care and access they received.

Participants will be involved in a 90-minute online focus group via Microsoft teams and will be reimbursed for their time. See poster below.

The group will be facilitated by Rhian Milton-Cole, a PhD Candidate at King’s College London. During the session she will ask questions relating to the patient’s experience of seeking support for their mental health conditions and any barriers they faced. Rhian will also ask about which treatment options were offered to them and if they found these acceptable and lastly if they believe the care offered to and received by Afro-Caribbean people is the same as the care given to and received by Caucasian people.

If interested please contact

Name: Rhian Milton-Cole
Email: Rhian.1.milton-cole@kcl.ac.uk

North West Regional Carers Network Event

Welcome fellow carers and readers. Aren’t you lucky today? I am publishing 2 blogs in one day. To be honest I was mean’t to publish 4, but I ought to get some rest. Lots of meetings tomorrow.

Due to being passionate about carers and passionate about a carer’s network. I was fortunate to be invited to speak at Cygnet Healthcarer’s carers network event. The event took place at Cygnet Hospital Bury.

Cygnet Healthcare look to provide the best service for their clients and this includes those who provide care. There is always lots of work to do, but they keep striving.

The event was called “North West Regional Carers Network Event”. Cygnet Healthcare have many locations, so it was brilliant to talk to professinals and carers about the importance of carers and the importance of a carers network.

I was also joined by another Carer who spoke on the day. Lesley Mellor who is the chair of Dorset Parent Carer council. She has an amazing personality and is an expert by experience regarding care and the importance of including carers. Laura Sheridan who is Group Service Improvement Manager for Cygnet Healthcare looked after us well.

We stayed at Premier Inn hotal which provided excellent service and lovely food. I am impressed by Laura’s dedication and philosophy for quality service and inclusion.

I was honoured to open the event and as usual due to my latest project on carer poetry, I read poem number 27. The poem was called “The Carer’s Network”, although to be fair I was struggling to choose which poem to read.

During the event, I spoke about my carer’s journey, the importance of carer’s being included and involved the audience in a quiz. Both Carer’s and professionals were knowledgable in their fields and were always honest and friendly.

We also had the following speakers

Vicky McNally – Director of Partnership and Engagement, Cygnet Health Care who spoke about the progress Cygnet Healthcare has made so far and the plans for the future.

Kate Mercer – Family Advocate, Black Belt Advocacy. Kate spoke about the importance of advocacy and educated us what rights carers have.

Sharon Spurling – Head of Network Development, Carers Trust spoke about the importance of Triangle of care and how Cygnet Health care are implimenting the triangle of care across their sites.

Overall, I enjoyed the day and enjoyed mingling with the speakers. I think I might have ate too much and doozed off, but that was my own fault. Looking forward to more conferences.

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

If interested in one of the workshop, you can book 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.

The importance of carer forums

Welcome to another carer blog post from Matthew McKenzie

Ever thought why carer centres run carer forums? If you are a carer then you know that you are putting others first. The more unwell that person is, the more care and support you give. There will be times of course that you become isolated, tired and wondering if you are ignored.

Well the things I have mentioned are some of the reasons why carer centres run carer forums. Those very centres usually also run carer peer groups. It gives carers a chance to be listened to and also be heard. Carer peer groups and support groups do not really give carers a chance to be empowered, but they do provide support.

If you are lucky enough to belong to a carer centre that runs a carer forum, then you have a chance to become empowered. You might be wondering what Matthew is on about. Well give me a moment and I will get to the reasons why it is so important to attend and support your local carer forum.

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Ever heard the saying “Nothing about us without us?”. The very quote came from disability rights activist James Charlton. If you are caring for someone, then services provided for them will be decided if you are involved or not. This goes double if you are using carer support services.

It is all fine that carers scramble to use support services to reduce isolation, be given guidence and join in carer activities. There does come a time when carers get a little bit tired of being told what suits them. So carer forums give carers a chance to request what services would be useful. It is so important that unpaid carers be empowered to use their voice, not only to update and tell their carer’s story, but also to give input regarding the services they use.

If you are providing unpaid care then these services could be carer assessments, carer hubs, access to skill development, learning about upcoming events and a whole lot more.

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A healthy service is one that includes the user’s voice and this is the same when it comes to unpaid carers who use carer centre services. If you are providing unpaid care, you do not have to be an expert to attend and support your local carer forum. It can be fine to just attend and listen to updates. It takes a long time to become an empowered carer and many carer services can be complex, especially if your carer centre is involved at your local authority carer strategy.

Without a carer forum running from a carer’s centre then the risk is carer services will take guess work in what carers want. So it is so crucial that carer members new or veteran attend their carer forums.

Remember Nothing about us without us!!