The importance of carers week 2022

Welcome everyone, especially unpaid fellow carers who are caring for someone.

My name is Matthew McKenzie, carer, author of a Caring Mind and Experiences of Mental health caregiving. I also run many carer peer groups and forums aimed at those providing support to someone suffering mental illness. Plus I am the chair of Carers UK ethnic carers advisory group and the National Triangle of care group regarding principles of carer engagement.

I am here to blog about carers week. For this year, it will be carers week 2022. I have been a long supporter of raising that much needed awareness of carers week not only to those who provide health and social care services to unpaid carers, but raising awareness of caring to the public and even carers themselves, not every knows or understands they are caring.

To watch the video, please play the video below.

  • So what is carers week all about?

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.

Organisations that support carers week are too numerous to mention, but the main ones are listed below

  • AgeUK
  • Carers Trust
  • Carers UK
  • Motor Neurone Disease Association
  • Oxfam
  • Rethink Mental Illness
  • The Lewy Body Society
  • So why do I feel Carers Week is so important this year?

Well there are several reasons.

The first is that there are many policies and laws being revamped and changed, this includes the Mental Health Act, The health & Social care Bill, Mental capacity Act and many more. We must raise the awareness that these changes do not exclude carers and their importance.

The other reasons are due to the high cost of living, unpaid care by its very definition IS unpaid, the vulnerable took a knock during the COVID-19 crisis and yet again the vulnerable will take a hit again. Providing support and care in the community should be praised by society and yet many think people should just “Get on with it”.

There are many other reasons, but the video would take so long. Unpaid caring carries stigma, not many would jump to the front of the line and say they are caring for someone suffering psychosis or self harm, because still in society people will be riddiculed. The other side of the coin is that some carers out there do not want the label, but the risk is they might lose out on support. Carers week gives that much needed awareness to say caring should be valued.

Lastly did I mention I am a poet? I am supporting Carers Week 2022 by doing a share and learn session at Carers UK. If you are a carer and want to hear more about my poety, mental health or awareness of ethnic / BAME carers. Please see the link below

https://www.carersuk.org/help-and-advice/get-support/share-and-learn-online-sessions

SW London MH Carer Forum February 2022

Welcome to a brief update of my South West London carers peer group. The reason this update is brief is because we had no speakers planned to attend and sometimes carer members just update on their situation.

A quick reminder is this group is aimed at those who are caring for someone with serious mental illness, they could be using the services of the local mental health trust South West London & St Georges or perhaps the person they are caring for is not in recipt of services. The carer group is a peer, engagement, networking and empowerment group covering the 5 boroughs SWLSTG covers (Richmond, Wandsworth, Merton, Kingston & Sutton).

For february we had a very good turn out and some new members. Most of the discussion was on sharing knowledge to those new to caring or those who were not sure what support they could get.

As usual I wont report anything confidential between members, only when speakers talk about issues that those unable to attend can catch up on.

Fast forward to May and engagement has been increasing between my groups and engagement from NHS England & Improvement and the local Healthwatches. Even if members struggle to feedback, they can at least understand what are the important issues of the day.

Mental Health poem by Matthew McKenzie

Welcome to my latest blog post. It has been a while since I have uploaded a poem. I have written close to 65 poems on the carer experience since the start of this year. Slowly a fair number of poems will be uploaded to my YouTube Playlist. The poems will play by themselves.

Plus I have added some podcasts of my poems

My latest poem is called “Confusion”

This poem is quite dark, but tells an often all too familiar story where the carer is trying to care for someone who has relapsed into mental illness. There are no beds or resources for the person who is very sick and thus the carer is confused on what to do. She will stick it out and try and cope as she watches her ‘loved one’ descend into madness.

Confusion by Matthew McKenzie

I sit and wait wondering what is next
Too scared to look at whats before me
The phone sits on the table, i am not sure who to call
I just dont know…I have tried before

The sounds…so distressing, so much is on me
but time is going so slow as my mind torments me
I look at him as his eyes look straight past
My heart sinks as my mind is harassed

Minute by minute..hour by hour
Not a word heard or a form of contact
I sit and wait wondering whats next
confusion takes me and I cannot find the solution.

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

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

For January 2022 speakers we had the following speakers.

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

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

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

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

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

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

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

What is BLACHIR?

Click Website link to visit for more info

Barbara Grey presents on KINARAA

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

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

Click website link to find out more about KINARAA

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

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

Stakeholder feedback on partnership

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

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

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

Natalie Creary presents on Black Thrive Lambeth

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

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

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

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

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

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

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

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

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

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

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

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

Exploring the barriers and facilitators to recovery for South Asian service users 

Nafisah Nabi a PhD student at the University of Mancheste is working on a PhD research project focuses on exploring the barriers and facilitators to recovery for South Asian service users within IAPT services. Nafisah is looking to recruit a Patient and Public Involvement Group who can offer feedback on research plans and study materials.

Please see the poster below. You can contact Nalisah at nafisah.nabi@postgrad.manchester.ac.uk

SW London MH Carer Forum January 2022

Back again with another blog post from unpaid carer Matthew McKenzie. I run many carer peer groups and forums and it has been a while since I updated on my SW London carers group. This is because I have been very busy working on my new poetry book for 2022.

Speakers for January
Karen Persaud – Involvement project
Discussion on speakers for the year
Matthew McKenzie – Involvement comparison

Karen Persaud Presents on SWLSTG involvement project

Karen come from a caring background and has been a carer for 14 years. Karen was impressed with the stories that have been shared at my group and felt they related to her at a deep level. Karen explained her past work as a carers champion and the work she did with the Royal College of Psychiatrists on formulating the Community Mental Health pathway, the Mental Health Act review and a few other bits and pieces she got involved in.

Karen felt she could actually influence the way carers were being treated because she was often ignored as a carer in the past and wanted to make a difference. In the long run Karen ended up having to make a lot of formal complaint and even though things were slow going through the formal complaints procedure, she felt thats when things were changed. All this ended up where doors were slowly open for her.

Now Karen is working with SWLSTG it has been quite inspiring. Karen added that she is in awe of what Matthew does especially his commitment and how much he actually takes on and actually gets done.

Karen thanked the carers group for having her and that she was really pleased to present what SWLSTG involvement team has been getting up to.

Karen mentioned about involvement team. The recruitment and the in patient involvement of people with lived experience of mental distress in developing services for the for the vocal trust in the community. What Karen is looking to do is involve from basic involvement to full Co-production as much as is humanly practicable.

The team has grown over the last year. Since she has only been there for a few months at the mental health trust. Karen then explained who was in the involvement team and what day do.

Karen mentioned that she is also passionate about, one of them being CAMHS which is child and adolescent mental health services, but not something that she is directly involved in at the moment.

Since Karen only just started work she has noticed the involvement activities slowly increasing where they have now got six peer support workers who have started, one of whom is a dedicated carer, peer support worker, and her name is Zoe Hannah.

Members of the group asked why should carers be involved which lead Karen to explain the following.

  • Carers have a unique insight that can help shape a more appropriate recovery plan
  • Carers are more than a point of contact, they play a vital role in patient and service users recovery.
  • Carers will often be responsible for managing medication, accommodation, finances and a range of other social, emotional and healthcare needs.
  • They may not be clinically trained so it’s crucial that they are supported.
  • Carers are a vital piece of the puzzle and their health and lives are impacted by their responsibilities
  • SWLStG is committed to improving the experience of carers and supporting carers, supports patients and service users so improves outcomes.
  • To show SWLStG commitment, we invest in resourcing and embedding quality standards and processes outlined in Triangle of Care, Carers Engagement Thermometer, NSUN 4Pi in addition to NICE Guidelines and CQC Regulations.

Matthew presents on carer involvement

Since I am mainly on involvement at South London & maudsley, I wanted to compare how involvement was developing at another mental health trust who is part of the South London Partnership.

South London Partnership link

This part of the group where we want engagement on how involvement works at other NHS trust and I recently asked this off my local mental health trust in regards to involvement as a form of comparison.

I pointed out to the group that one of the worst aspects of being a carer is to be isolated and uninvolved. This means not on being involved for caring for someone, but being involved regarding changes to health & social care services.

The idea basically, you know, one of the worst aspects of care is to be isolated and uninvolved when I say uninformed, I mean getting involved in, I suppose veteran services Metro services not just involved in regards to the care of someone, but how services work and given their ideas and learning from other carers who’ve been involved just as what Karen presented before.

I explained to the group that a good involvements structure easily shows a bird’s eye view of services, and how it reveals involvement for both patient and carer.

The picture above shows an update on the projects showing involvement in the Southwark mental health services. I showed involvement updates and structure for some other services, but felt carers should do the same regarding SWLSTG.

This is the update for January for my SW London carers forum.

Experiences of holistic care at the Lambeth clozapine clinic research

Elizabeth Tuudah is looking for unpaid carers from the Maudsley for her PHD study. The study is to better understand your experiences of holistic care at the Maudsley clozapine clinic. Holistic care is care that addresses the whole person’s needs (e.g., mental and physical health) and involves different health professionals working together with you to provide person-centred care.

The experienced-based co-design (EBCD) approach involves bringing together service users, carers, and staff in a series of events to improve healthcare services. The EBCD approach has previously been used to redesign both mental health and diabetes services to improve service user and staff experiences.

Please see poster below.

April Carer News Updates 2022

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

Click below to view latest carer news for April

April 2022 Carer news

For April edition we have

Sarah Spoor – Cost of Living Crisis on carers – Interview on how the cost of living is affecting unpaid carers across the UK.

Carers and individuals accessing social care services urged to ‘submit evidence’ to House of Lords committee – Shropshire Council and many other councils are urging carers as well as individuals who use social care services to take part in the House of Lords inquiry ‘Lifting the veil: Removing the invisibility of adult social care’.

Why mental healthcare is less accessible to marginalized communities – News piece from the US on the problem of mental healthcare when it comes to marginalized communities.

Unpaid UK carers 4.5% worse off as cost of living erodes benefits value – Warnings of cost-of-caring crisis as state allowance is cut by £170 a year in real terms

SIGN UP TO NEWS SITE HERE

Look after yourself – Carer poem by Matthew McKenzie

No one ever told you that you will be doing this
Yet here you are trying to cope
Trying to care

No one ever told you how much you both will suffer
Yet you are are trying your best
Being there

No one ever told you that things could go wrong
And yet each day you struggle
hoping the illness to disappear

No one ever told you about the sacrfices
Yet you will keep sacrificing
Year after year

No one ever told you about the future
Yet you are putting it on the line
facing it with fear

No one ever told you that you was a carer
Still caring?
Look after yourself.

The thin line of Patience – Carer Poem by Matthew McKenzie

This poem is number 9 of the new book I am working on regarding the experience of care expressed as poetry.

I am looking at that clock again
Tick tock, tick tock
The sound is driving me crazy
Tick tock, tick tock

His in the ward again, being detained
It has been weeks now, and I am going insane
All these thoughts rushing through my brain
Wondering when if things will ever be the same

I think I will sit down and watch the TV
Maybe if I put something on, the time will pass easy
My brain hurts and my stomach is queasy
Oh when will they ring, so someone can inform me

While the TV is on, its only been 20 minutes
Nothings good worth watching and I am hitting my limits
The sound of that clock, its making me fidgit
Maybe I ll head out and see him on one of my visits

Oh I don’t know. Why am I doing this
I rang them ages ago, something is amiss
I grit my teeth, have a frown
Something needs to turn around
No one is calling
My heart is falling
My patience is gone and I am about to start bawling