Author Archives: mmckenz11

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About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Greenwich Mental Health Carers forum October 2022

Welcome to the latest update of my Greenwich mental health carer forum. I run this with the support of Greenwich carers bi-monthly. The focus of the forum is to give unpaid carers a chance to query, understand and focus on the complex world of mental health provision, especially trying to influence mental health providers of the importance of unpaid carers. In a sense, carers can be service users as well, so services should take account families and friends supporting those with mental ill health.

Speakers for the October Greenwich forum were

Peter Ley – Oxleas Greenwich Service Manager
Myles Thorpe – Voice & Engagement Officer for Greenwich Area Involvement Network
Jason Mcculloch – Service Manager, Commissioning, Health & Adults Services for Royal Borough of Greenwich

  • Peter Ley Updates MH carer forum

Peter talked to our group regarding the work going on between Oxleas and Bromley, Lewisham and Greenwich mind in order to create a well being hub. Peter explained that basically, it’s a merging of those kind of services, to kind of provide something for people where there is an easy to access. So when you go to a GP service, or maybe you just want to drop some concerns, what they are developing is a hub of different types of interventions for people that can be accessed really quickly

The intention is to provide people with prompt access to things that will help on their mental wellbeing. The idea is that rather than go through a kind of long drawn out process of repeatedly being assessed for mental health, the idea is to get to something that’s helpful intevention and be quite quick about it, provide things to people in a matter of days, rather than months. This is opposed to when a situation gets worse, then more kind of time has to be taken to get service users back on their feet.

Peter then mentioned how the pandemic is still impacting the NHS. The impact certainly has been felt from a community mental health team point of view, so they coming back into a greater number of face to face visits at home, rather than using the phone or waiting for people to come to them. So people should notice where there’ll be more of contact that is actually face to face. There should be more home visits. Something new were put in place to help with that is something called “The Care Teams Approach”.

So across all the community teams in Oxleas e.g. psychosis teams, the intensive case management for Psychosis services, what they will be doing is getting two care coordinators together and supporting them two support workers. So the kind of caseloads will spread across four people rather than one. So caseload sizes that those four will be looking after will workout to, ideally 50 patients, but in some cases, is 65. The standard there is that each of those workers does at least 10 to 10 face to face visits each week, which should instantly increase the amount of face to face visits that people can expect to get across the month in the community.

  • QUESTIONS FROM CARER MEMBERS

I’m understanding correctly, your well being hub, I noticed that it’s still a trial at the moment. But the referrals, are you saying that the referral has to be done via the GP? From my personal point, they cannot manage the services that they’ve already got. I’ve got health problems at the moment, and I’m struggling for myself, if I had to reach out about the person I care for, then the chances are, for example, I call trying to get an appointment on an urgent need. When there’s no appointments, you get referred to the Greenwich hub, they call it a Greenwich hub. And all what they do is triage you over the phone, and then refer you back to the GP anyway

You said it’s two CCOs and two support workers. Are they permanent staff, or are they locums? Because Oxleas seems to me to be running on locums. At the moment.

Peter we have not seen you for a while, we do hope you can engage with mental health carer groups, so there is an understanding of how Oxleas supports and engages with carers.

I myself asked the following questions

Who leads regarding care coordinators and social workers? If a Medical director leads regardings psychiatrists, then does Oxleas have a director of Social care? Although I understand care coordinators can be a generic role, plus what sort of training do staff at Oxleas get regarding carer identification and engagement?

  • Bonus update from Debora Mo – Mental Health Commissioning Support and Engagement Officer at SE ICB

Debora updated that they are conducting workshops with clients in a range of supported accommodations in Greenwich. So mainly from bridge support, one housing and Sanctuary. They already had their first workshop but they would like a couple of mental health carers to join if they were able to. There was a contribution for lived experience people, which is London living wage level. The sessions are held at the “London Marathon playing fields” (https://www.accessable.co.uk/venues/london-marathon-playing-fields) and the next one is on the fourth of November. They can only accommodate about one to two carers because the facilitators they are working with are really keen that the group of people who actually have the lived experience.

  • Myles Thorpe on the focus of Greenwich Area Involvement Network

Myles introduced himself regarding his work with GAIN. Myles mentioned it’s a was Community Action Group that worked closely with Oxleas and various public mental health bodies to improve representation of seldom heard groups, this means lived experience of mental health users to engage with the service providers. So this is incorporated in the decision making and service provision. The goal is to improve access to mental health services.

GAIN recently registered as a charity, and Myles is their first member of staff. He is doing research essentially, in connecting with various communities. There’s a whole number of groups, networks and subgroups where all of the information that they gather, whether that’s on service users or members of the community, gets fed into a kind of working group. They try and bring the provision of mental health forward so that it’s fit and efficient based on the resources that they have in the community.

  • QUESTIONS FROM CARER MEMBERS

It’s good to hear that carers are going to be involved and I hope fully involved, not not just as an afterthought, which we feel we are at the moment.

Wasn’t there a recent event regarding GAIN? I was wondering that turned out?

So Myles and myself sit in different things together, apart from the fact we do communicate a lot, but we also sit in different meetings that involve others like Oxleas and BLG Mind. So we are trying to focus on a united front, in a sense of all the work that’s happening, and also share all this information and knowledge.

  • Jason Mcculloch updates on Royal Borough of Greenwich Carers Strategy

Jason talked about what his remit covers, which is a number of service areas, but unpaid carers is one of them. He has been coordinating the delivery of a new carer strategy for the borough of Greenwich, this is a joint carer’s strategy with health colleagues, which was launched formally a couple of weeks ago, down at town hall. The launch was followed up with an event at Greenwich carer center. They are now planning further events in the evening, where the date is to be confirmed.

Jason was at the meeting to let everybody know that they have launched this new carer strategy that they are now moving into the sort of implementation phase of that strategy.

One of the key aspects of the strategy for Jason is that carers should receive a consistent level of service regardless of where they connect with health and social care services across the borough. So whether it’s at the GP, whether it’s with a social care team, either at the carer forum or with Oxleas, whether whether it’s a hospital, and you should expect the same basic level of service, the same sort of consistent information and advice.

In the background to make sure that colleagues across the health and social care sector and are aware of the strategy. We need to make sure they are aware of the commitments within it and understand what services are available for carers, which you can access or can be referred to. So as of this moment they are starting that work now, talking to the various social work teams getting engaged with GPS, and so on.

  • QUESTIONS FROM CARER MEMBERS

I’ve done so much for my son in the last two years. And I sit my listen to all these promises, and all the research and projects that have been done. And I’ve heard it all before they come and they take information from us, and then we don’t see them again.

Were there any mental health carers on your working working group? I was on this for 4 or 6 years ago, I was part of the original carer and strategy working group that you were setting up, but it all fell apart and I never heard anything more about it. Will there be more focus on mental health carers this time?

Lewisham Mental Health Carers forum October 2022

Hello fellow mental health carers and readers, been a while since I have been blogging due to working on my new book called “Race, caring and mental health”. This book will be my 2nd release for 2022, the book will reflect how mental illness impacts on carers from ethnic minorities especially black people. I hope to get that book out for November 2022.

Going away from promoting my new book, this is just a quick blog for my Lewisham mental health carers forum. A forum aimed at those caring for someone suffering mental illness.

The speakers for October 2022

Marie Cooper RGN BSc MSc (Florence Nightingale Foundation) – Pallative care “walking the walk”
Evelyn Sample (South London & Maudsley NHS Trust) – Approved Mental Health Professional / Mental Health Act presentation

  • Marie Cooper presents on Palliative and End of Life Care

Marie Cooper who is also the Project Lead for Palliative Care Nursing at St Christopher’s wanted to understand the experience of the carer when its come them supporting a loved one coming to the end of their life. Marie mentioned when it reaches that stage, the term for that person becomes more personal as they see themselves more than just carer. They are perhaps a family member, a loved one, anybody of importance to that person.

Marie mentioned it is really important to hear the voice of the relative or person experiencing their loved ones end of life care. Marie started off by showing a few pictures of hospital rooms.

In her talk it was stated that in hospitals, where someone was visiting a loved one or someone who had died. The experience of walking through the hospital or the bereavement suite makes a big difference in someone life, this will stay with them forever. So the project Marie mentioned was “Walking the walk” as Marie and her colleagues would become the carer as they walk through the wards. They travel right through the hospital into understand the entrance, the experience of what that family might be going through as they visit a loved one who has died. Marie focuses on emotions of that time, some people are rushing to get to where their loved ones are, or the people being there for days waiting and attending to their loved one and what support is there for them.

The overall aim of the project is to improve the experience for the family and the friends, anybody. What they did was they worked with 25 hospitals, those being 25 acute trusts over the past and pre COVID period. They have just done the Evelina hospital for Children with parents, which has been a very powerful experience. That hospital is formed from Guys and St Thomas NHS FT.

As mentioned in her talk, Marie literally walks through the hospital, they do the walking, and this would be a team of four of them. They would visit all the public sites, look at the toilets, look at the phones, look at the cafeteria. They would take photographs and eventually they report back to the hospital to get feedback on improvements. In the end it just gives them a chance to speak to the nurses, the doctors on what their experience of people coming to the hospital in their last days? What’s working well, what would they like to see different.

Marie and her work partners look at four areas, they look at the environment to practical facilities, is it clean? Is it comfortable? Is it hostile? Is it something that they would want to sit in which is accessible? They also talk to families to get their experience e.g. caring for my loved one for many years? Can they still care for them? How much can they be involved in the care of their loved one? Then thirdly, what support is there for that person? Have they got Wi Fi access at that hospital site? Can they get access to food? Can they park? Can they shower? Can somebody be their key person? tell them what’s going on so they can support their loved one? Plus what about the care after death? What care is there for the person after that loved ones dying. So they look at all those four elements as they traveled through the hospitals.

Marie should has a picture slide of waiting rooms at a children’s hospital. The experiences when children die, the memories and all the incredible work in children’s hospitals and hospices around trying to contain those lost memories, and about how to show a child are still being cared for after their passing, through the use of fabrics and cots and other furniture. So that in keeping the personhood of that deceased person relevant and respected that the family might be find helpful and comforting in future.

QUESTIONS FROM CARER MEMBERS

Is there capacity for cultural improvement for the experience of pallative care regarding ethnic minority carers.

Do You get any push back from Chaplin services as hospitals?

I run a carer stall at several hospitals, What can you say to someone who’s going through a difficult time when their loved one has died or is dying?

How can mental health trusts take on the programme? People do not die as in a planned state, but pallative care is a concern due to sudden death or complications from mental and physical health.

One person mentioned that their are two end of life care situations that comes around in different ways. For some people it’s planned that they’re goning to die. Often in certainly adult mental health services, we don’t always know when people are going to die. It is usually quite traumatic and when they do die, either through suicide or premature death, because they’re physically unwell, we are not sure if we have a sort of clear cut response. Often, there’s lots of practical things that we might help families after, but from the presentation there are a lot of things to query.

It was raised that the way carers centers respond to end of life, is that they would not normally stop someone’s membership when they cease to become a carer. Because they know that that’s a really difficult time, and they’re going to need help, sometimes they might keep them for like 18 months after to help them, especially if their caring role has been their full time job and their identity, they would help them sort of replace it with other things, volunteering, getting back to work, that sort of thing. It would be bad pratice to tick a carer off membership if their loved one passed away, but then it is also a decision for the carer.

Are pallative care policies updated at mental health trusts compared to accute trusts?

One person responded I don’t think or I’m not aware that we do have a brief new policy, we have a certain minimum as unfortunately and tragically, a very high disproportion of our service users die prematurely. The experience and impact of death has a huge strain and trauma on the carers health.

As in the past there are a number of our service users who commit suicide and when there is an incident then there is an investigation process that goes into reviewing the care that was provided to that individual.

  • Evelyn Sample presents on the mental health act

Evelyn looked into the role of the nearest relative under the Mental Health Act and how it’s changing in the coming years. She is aware for a lot of carers that the Mental Health Act and the functions of the nearest relative are quite confusing. So she thought that she would talk to us about what the nearest relative rules are and why some people are nominated as the nearest relative. Plus how and what are the rights and responsibilities of the nearest relative and how that might be changing.

Evelyn reminded us that she is a mental health social worker, which means she is an “Approved Mental Health Professional (AMHP)”. Now the approved mental health professional historically has been as A role that was exclusively for social workers. Since 2008, it has been possible for non social workers, nurses, occupational therapists, psychologists to have that role.

Evelyn feels what is really important is that people have information about the role of the nearest relative, because what happens as an AMHP is that you are assessing someone under the Mental Health Act, either you’re planning an assessment that’s going to take place in the community or you’ve been asked to assess someone who’s already an inpatient in the mental ward. This could be because they have come in as an informal inpatient, and they are now having a mental health assessment on the ward.

The function of the nearest relative is to provide a safeguard under the mental health act. So in order to ensure that people have person/patient interests and also they have the person’s well-being considered. The nearest relative has an important role other than the doctors who are involved in making recommendations for detention, or the amp who is employed by the local authority to also act as a safeguard.

The idea is that the nearest relative is intended to be the person who is thought to be closest to the patient, and who therefore knows them best, and is able to, to act in their best interest.

When the Mental Health Act was originally devised in the early 80s (1983), the current Mental Health Act, used as a sort of table for identifying new relatives. That table now seems quite outdated so therefore there was a proposal to change the act so that people can actually choose the nearest relative. Evelyn mentioned they have a system where the nearest relative ( Section 26 of the act). says if you are the husband or wife or civil partner of a person, then generally you will be the nearest relative. Then the table goes on from there.

Husband, wife or civil partner
Son or daughter
Father or mother
Brother or sister
Grandparent
Grandchild
Uncle or aunt
Nephew or niece

The issue is that it is a rigid order that is set out in the law that determines who is the nearest relative? And currently, the amp and the patient have little to no say over that.

The proposal is that under the Under the new Mental Health Act that’s coming in; Mental Health patients in advance of mental health assessments, when they have “capacity” to do so will be able to nominate their OWN nearest relative and choose the person that they think will best reflect their their wishes, and will act in their interests.

So this change is going to be significant in the legal situation, assuming that the The bill has not yet gone through Parliament, which is about increasing the patient’s choice, and enabling patients to be more involved in the decisions around there care and treatment.

QUESTIONS AND STATEMENTS FROM MEMBERS

Sometimes the nearest relative is usually the carer or friend. So when it comes to the nearest relative, could it not be changed to “The nearest relative or carer?”. Because sometimes the nearest relative might be 100 miles away.

Can the nearest relative refuse because of bad history with their parents, whether they’d been abused and they just they just basically have cut links can they refuse if they were contacted?

Do you have any like sort of queries or concerns regarding the new changes to the mental health act? and the second question on is there like a list somewhere on like the duties an AMHP that could be tailored to how they deal with unpaid carers?

Lewisham Carers Hub – Carers forum relaunch

Welcome to an update from my unpaid carers blog. Recently I attended Lewisham Carers Hub event. They are relaunching their carers forum, which is a great way for unpaid carers to connect, network and voice their feedback.

Lewisham Carers Hub provides a range of services including advice, information, emotional support, short breaks, opportunities to meet other carers to reduce isolation and build resilience.

The event was chaired by Sue Stockman – Director of carers services. Sue listened to carers carefully and responded very well to queries and concerns. With the relaunch of the carers forum, Carers Hub Lewisham wants to be more inclusive and give carers a chance to co-chair the meeting.

I was excited to hear about work to promote a carer’s charter developed in conjunction with unpaid carers. A carer’s charter helps carers and others know about carers rights. I also learned about IT development support for carers struggling with digital literacy and upcoming services at the carers centre including carers counselling service, health and wellbeing activities and cost of living workshops.

At the forum was Tristan Brice from Lewisham council. Lewisham council wants carers to feed back on recommissioning and also wants to hear from carers about carer identification, carer assessments and other things.

Lewisham Carers Hub are also going through a rebranding process and I have included part of the branding below. There will be more to come.

In the end I thought that well attended with many carers contributing their thoughts and suggestions. I feel having a carers forum shows how a carers centre can give carers a voice and a say on what helps them overall. So even though it is early days, we can see how the carers forum develops.

King’s College Hospital – World Mental Health Fair

Welcome back to another blog by Matthew McKenzie carer advocate and campaigner. Just a quick reminder this website focuses on those who care for someone with a mental illness. I am talking about unpaid carers, usually friends and families. Just recently we had an awareness campaign “World Mental Health Day” 2022.

World Mental Health Day runs on Monday, 10 October. For the UK, the national mental health charity “Mental Health Foundation” leads on raising awareness and campaigning for better mental health.

https://www.mentalhealth.org.uk/our-work/public-engagement/world-mental-health-day

Of course there are other organisations and charities that help raise awareness of mental health. I have recently been engaging with hospitals to focus on unpaid carers. King’s College Hospital NHS Foundation Trust is one of the organisations that engages heavily with one of my carer forums (Joint Southwark and Lambeth). I was delighted to be asked to promote my carers group at the latest World mental health fair organised by King’s college Hospital.

King’s College Hospital mental health lead Kieran Quirke organised the event. Kieran is the associate Director of Nursing for Mental Health at King’s College Hospital. The fair was to introduce to staff, patients and carers about what is available in the community.

The organisations that took part were the following

The Well Centre
Lambeth Carers Hub
Age UK Lambeth
Southwark and Lambeth Mental Health carers Forum
The SHARP Gallery
Southwark Wellbeing Hub
The Butterfly Dementia Cafe
Kooth (youth mental wellbeing support)
Lambeth and Southwark MIND
Mosaic Clubhouse
South London and Maudsley NHS Foundation Trust.

I am sure there were many more, but the important thing is that the community was brought together to network and help raise awareness of all the important work that they do. I was told that the room the MH fair took place, had just been recently decorated. This shows that King’s College Hospital are trying their best to invest in what is important to the community.

For my stall, I focused on the importance of unpaid carers given the empowerment to promote networking, peer groups and advocacy.

I hope there will be more events like this next year.

September Carer News Updates 2022

SEPTEMBER 2022 Carer and Mental Health news <- read more news items here

For the September edition on caring and mental health we have

How is the cost of living crisis affecting unpaid care? – Report that looks into the struggles unpaid carers are facing.

State of Caring conference 2022 – Carers UK conference with updates and campaigns, plus a chance to network with other carers.

Whiteness and Race Equality network. Training opportunities to increase participation in peer review – Conference at how race operates in the research and publication. For more details, check my ethnic carer forum update for September.

Allied Health Professions (AHPs) Deliver: Implementation Framework – The framework gives guidance on how the AHPs strategy for England: should be applied during the five years of its lifespan, 2022-2027.

‘London, You Good?’ NHS campaign launches to encourage young people to seek help for mental health problems : West London Health Trust – Campaign to encourage young people to come forward for support early and potentially prevent experiencing a mental health emergency

SIGN UP TO NEWS SITE HERE

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

Carer of People with Autism & Psychosis – KCL group

Hello fellow unpaid carers. Kings College Institute of Psychiatry, Psychology and neuroscience are launching a new group. The groups will be facilitated by Madeleine Oakley who is the Senior Teaching Fellow in Mental Health Studies at Kings College London. Madeline also has experience of care as she is also a family carer of her young adult son who has autism, who has a learning disability and mental health problems.

Please see poster below and you can also contact Madeleine at madeleine.oakley@kcl.ac.uk

August Carer News Updates 2022

The latest edition of Matthew McKenzie’s online carer, mental health and ethnic mental health news is out for August.

AUGUST 2022 Carer and Mental Health news

For the August edition we have

Cost of living crisis: Bills soar for carers – Sky News : Sky News reports on the soaring costs of bills making life harder for unpaid carers.

Impact of cost of living crisis on unpaid carers – Mobilise : GBNews report and interview where Sarifa, an unpaidcarer in Newham talks about her experience on the cost of living crisis.

Carer wellbeing : New online course developed by Matthew McKenzie. Only £2 via paypal or just contact me to access the course

New Data Shows The Number Of Unpaid Carers Has Almost Doubled Over The Last 10 Years : New Data Shows The Number Of Unpaid Carers Has Almost Doubled Over The Last 10 Years To Over 10 Million In The UK

Haringey residents welcome campaign launch by Carers First  : Carers First is rolling out free emergency plan packs exclusively in Haringey for people who care for a relative or friend.

A coproduced approach to tracking young Black men’s experiences of community wellbeing and mental health programmes : Funded by Mind, Centre for Mental Health has designed a new, culturally informed approach to monitoring young Black men’s outcomes for accessing wellbeing support.

SIGN UP TO NEWS SITE HERE

Wellbeing skills for Carers, Families & Friends – Kingston

For carers over in the London borough of Kingston. There are sessions aimed at unpaid carers which are informal and friendly. The sessions give practical ideas and tips, based on the latest scientific research to increase resilience, improve wellbeing and manage stress and anxiety levels better.

Please see poster below for more information or contact communitylearningkae@kingston.gov.uk

There is also a link below and the scan code

https://bit.ly/KAE-CLcrc2223