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

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

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

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

Speakers

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

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

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

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

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

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

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

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

QUESTIONS FROM CARERS

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

  • Carl Nando updates on AmenityCare update

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

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

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

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

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

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

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

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

July Carer News Updates 2022

The latest edition of my online carer, mental health and ethnic mental health news is out for July.

Click below to view latest carer news by Matthew Mckenzie for July

JULY 2022 Carer & Mental Health news

For the July edition we have

Swindon Carers Centre: 2022 AGM Recording : YouTube video of Swindon Carers AGM. Hear the latest updates on what the carers centre has been doing for carers.

Carer Activism : My latest online course for carers. This one is on applying activism for carers who struggle with engagement from health and social care. Only £2 via paypal.

Walking the Walk: How can we use carers’ experiences to improve end-of-life care? – BMJ : Paper on how carers experiences of end of life care can reflect on professionals.

State of Caring Survey 2022 – Carers UK : Carers UK release their “State of caring survey” for 2022. Important to collect the experiences of carers.

Equality and Human Rights Commission Annual Report 2021-2022 : Latest update and report from the Equality and Human Rights Commission

SIGN UP TO NEWS SITE HERE

SW London MH Carer Forum March 2022

Welcome to my March 2022 update of our SW London mental health carers forum. The group is a hybrid group of my other forums. Usually my carer forums focus on engagement and updates, but this one sometimes acts as a peer and network group for those caring for someone with mental illness.

Speakers for March 2022

  • Karen Persaud – SWLSTG – Carers, friends and family involvement coordinator
  • Gary Baker – Carers Support Worker – Richmond Mind
  • Antonia Buamah – Patient peer support – EMHIP– Ethnicity and Mental Health Improvement Project.

Karen from South West London & St George Presents

Karen who sometimes attends and engages with our group updated us on carer developments at the local SW London mental health trust. Karen spoke about the new carers peer support worker Zoe Hannah. The new role will be running for one year and should hopefully continue onwards.

The trust is actually really committed to pushing forward the lived experience workforce as part of their overall service delivery. This is where they have four services user peer support workers in posts. SWLSTG are also currently reviewing the trust’s carers strategy, which is quite outdated.

The new strategy will also be reflecting on the need for the trust to do more around supporting carers through their carers recovery journey, because carers go through a recovery alongside supporting loved ones through their own recovery journey. This means it is trying to balancing out wellbeing needs.

The next update for SWLSTG is there new recovery college course, which is being facilitated by Kingston adults education, college. The course has been adapted for wellbeing techniques for carers, families and friends. The course should be running for 10 weeks. Karen also updated briefly on the friends, families and carers group incase new members of our forum are interested in trust involvement.

Last updates from Karen was on the carer awareness training for staff, especially on induction for staff. This would involve carer communication skills plus carer involvement in the planning and discharge.

Gary Baker – Carers Support Worker – Richmond Mind presents

Gary fed back on how Ricmond Mind works closely with Richmond carers regarding mental health carers. Carers can be self refered or be referred to by another professional. Once they received that referral, Richmond Mind will contact the carer. From there the carer will be given access to support and workshops.

Gary mentioned that quite a few people tend not to like the term carer and tend to prefer being called a client or the person’s relative.

  • Responses from carer members.

Are services at Richmond could be offered in Merton or Kingston? (quite a few members asked about the services)
My question was on engagement from SWLSTG, I wondered if Richmond Mind staff have been invited to meetings. Gary talked at length regarding carer champion meetings.
The next question I asked for engagement from community mental health teams. This is where Gary mentioned that there was not enough.

Antonia presents on the Ethnicity and Mental Health Improvement Project (EMHIP)

Antonia talked about how the Ethnicity and Mental Health Improvement Project (EMHIP) is an attempt to reduce inequalities in access, experience and outcome of mental health care in South West London (Wandsworth & Tooting, Battersea locality). It was developed through the leadership and activism of leaders within the African, African Caribbean, and Asian communities.

The EMHIP advocates for a practical, locally based service improvement programme, co-designed with service users and local Black and Asian communities, based on established evidence, building on existing community led, co-produced projects.

In the UK, people from the Black and Asian community are being denied equal and compassionate mental health care.

  • They more likely to be brought to and kept in without their consent.
  • They are more likely to access mental health services through the police and criminal justice systems.
    find themselves unwell and back again, once released, particularly men
  • be forcibly restrained and given more than the recommended amount of medication.
  • The fence of mental heath for the Black and Asian community has been broken for several generations and the many promises of repair (partial or full) has not materialised to date.
  • We have delved deep, hence, our toolkit EMHIP– Ethnicity and Mental Health Improvement Project.

Antonia pointed out that as a community we’ve recognised that our broken fence must be repaired once and for all and have forged collaborations and partnership with many friends

South West London CCG (CCGs are now replaced to Integrated Care Boards)
South West London and St. George’s Mental Health NHS Trust
Local context of Black and Asian – voluntary, faith and community groups

This can be organized via the non-profit Wandsworth Community Empowerment Network (WCEN)

The Hub offers our guests, visitors and other attendees a communal safe place to sit down, relax and have a conversation in a hospitable environment.

Service/Sessions provided:

¨ Physical Health and Wellbeing checks
¨ Citizen Advice Bureau/Housing First Aid
¨ Pastoral Systemic Therapy
¨ Mental Health and Wellbeing Out-patients type clinics
¨ Explore training or employment opportunities
¨ Promote on-going recovery
¨ Social life wellbeing
¨ Effective “active sign-posting” to the supportive local services or agencies

More information can be found below

Website: http://www.emhip.co.uk

Email: info@emhip.co.uk

This was a brief update for my SW London mental health carers peer group. For the month of July SW London NHS will be engaging our group regarding SW London’s mental health strategy. I for one will hope it will include families and carers.

New online Carers rights course by Matthew McKenzie

Hello Fellow carers. I have now practically finished developing my online course for those caring for someone.

This course can be accessed via the courses section off my website.

The third course is on Carer’s Rights, which is such an important topic to millions of unpaid carers out there.

The online course covers the following with over 4 HOURS of content!!!

  • Your rights as a carer
  • Human rights
  • What things carers usually complain about
  • How to complain as a carer
  • Whose is responsible for carer’s rights
  • Support from employers when caring
  • Carer wellbeing under carer’s rights
  • List of different acts and laws
  • Complaint escalation ladder
  • Carer’s Assessment
  • Tackling confidentiality.

If you are a caring for somebody and do not know what your rights are, then this is the course for you. Only £2!! Or just email me

Watch out for more online courses, which I will be developing very soon.

SW London MH Carer Forum April 2022

Hello fellow unpaid carers. Welcome to a brief update of my South West London mental health carers forum. I am very behind on my updates because I have been busy working on my new poetry book on carer experiences. I am also developing online courses for carers. So if you want a bit of education, try some of my courses out.

Carer Identity

Carer Networking

Going back to my SW London carers forum. This one is for April and the following speaker from Hull University was


Dr David Barrett – Empathy and Nurse Education.

Dr David presents to the SW London carers forum

Dr David Barrett from the Department of Paramedical, Perioperative and Advanced Practice at Hull University wrote a paper on “Effectiveness of empathy education for undergraduate nursing students”.

David started out describing to the group on what is empathy. David felt that we would have our own thoughts on the term and what it means to us and why it’s important. David felt that it’s a tricky one, because there’s lots of people who have lots of different ideas on exactly what it is.

Dr David felt that empathy is about being aware of, and understanding what somebody else is feeling. Plus empathy is being able to demonstrate to them, that understanding as well. This mean’t that empathy awareness is not just not just internalising, but also demonstrating to the person that you understand how they’re feeling. Empathy is using that willingness to respond appropriately to those needs. David mentioned about a term “walking in someone else’s shoes, or it’s someone else’s pain”. David felt it was that as a concept.

There seems to be a problem on just how far you can take it as possible to understand what somebody else needs are? This is because everybody is an individual, we’ve all got our own backgrounds or experiences, our own ways of dealing with things. So whether it’s truly possible to ever understand what somebody else is feeling, He thinks it is a discussion that the group could looking into afterwards.

The reason why empathy is so important is that in an health care setting, it can provide some important benefits for people that nurses and other health care providers care for. There is good research that if somebody is empathetic as a health care provider, then the person they provide care for is likely to have a better experience might see higher levels of service user satisfaction.

If there is a healthcare team is demonstrating empathy, and it can, for example, reduce infection rates, improve what you’re feeling yourself, it can even reduce other complications, e.g. diabetes and other things. So in the end we can see improved physical health outcomes. Dr David stated that most importantly you can also see improvements in mental health and well being. This is where you can see lower rates of depression related distress or anxiety. It is also worth mentioning that improved mental health can also sometimes be seen in the healthcare professionals themselves.

Dr David Barrett started talk about how nurses were trained in Empathy at the course and on the importance of families and carers being involved education from an authentic perspective.

Just to note, I missed a month by Jumping to April, but will add the blog for my SW London carer peer group for March later on.

You can get hold of Dr David’s paper from the link below.

https://www.researchgate.net/publication/353763640_Effectiveness_of_empathy_education_for_undergraduate_nursing_students