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.
Here are two more poems from my upcoming book “The Poetry book of mental health caring”.
The first poem focuses on wellbeing for carers who are caring for someone suffering mental illness. To be fair it does not actually have to be mental illness, but the main point is the person is thrown into becoming a carer.
The next poem is more psychological. The poem called “The Mirror” asks the carer to reflection on their identity, especially when the carer is judgemental about themselves. I certainly was very judgemental about trying to provide unpaid care and at times I still am critical.
Welcome to a brief update on my joint Southwark & Lambeth mental health carers forum. I run this forum online via zoom once a month. It used to run from Maudsley hospital, but had to move it online due to the covid situation. I am guess I am so lazy to move the forum back to the mental health hospital. Will have to see.
Another update is I have started my volunteering at my local accute hospital trust, so I will be having a carer stall for families of patients to visit me. Lewisham & Greenwich trust have been helpful in giving me a spot to engage with families and carers. There will be lots to work towards, but it certainly is a good start.
Going back to my Joint Southwark and Lambeth mental health carers forum. The speakers for March 2022
Claire Parry – Maudsley Psychotherapist on updates at psychotherapy projects at the NHS Trust
Rebecca Davies & David Meyrick – Developments for families & carers in the borough of Southwark
Annette Davies – Carer peer groups and PCREF.
Natalie Marshall – Community peer lead and support for unpaid carers
Claire Parry presents to the group
Clare Parry is a family therapist. She took up the post in June 2021. This being the role of lead family therapist in Soutwark. This includes being a trusted advisor around family therapy and family work across the NHS trust. So part of her role is looking at where services may have family therapy and family work and where they don’t. Her focus is on more of the psychotherapy side rather than kind of carers assessment side. A lot is done to make family members and carers comfortable with the service they provide.
Part of her role over the last year, was working really hard in the psychotherapy services and reduce waiting times. There has been an acknowledgement that waiting times for therapies are far too long. So they have been piloting a project, which means that they are offering other interventions, while individuals, couples or families are on the waiting list for therapy
Clare is very interested in the stories that many carers have to tell, So she wants more carer engagement to events. Claire hopes that psychotherapy can make a different to others who don’t get to talk when someone’s unwell. Clare talked about how some major carer systems have been influcing the NHS trust services, those being the Tree of Life and the Triangle of Care. She also talked about Open Dialogue.
Rebecca and David presents on community transformation project
A lot had been covered by Clare on community transformation, but it was also included at this part of the forum. Rebecca mentioned that a new team, that being a low intensity team has just started. It has just been open for a couple of weeks and the rest of the services will be moving over. There was also more talk about the new mental health hospital build from Lambeth to Southwark.
Rebecca also mentioned that there will be a north and south primary care mental health teams, and the four CMHT’s which will work with most of the service users across them across the borough of Southwark. Rebecca moved on to talk about complex care services, which will include assertive outreach, rehab teams, low intensity team and early intervention team. Plus community mental health teams are going to be merging a lot of the other services.
David who is the maudsley inpatient carer lead for Southwark talked more about Triangle of Care. He admitted things had been slow due to the previous covid-19 epidemic, but with South London & Maudsley working towards their first star in the triangle of care membership, things are picking up. David mentioned how each ward has a carers champion and how they are engaging with families and carers on the wards. David had a strict regime of carers being included in patient notes especially in surguries. Support for patients had to be increased and families & carers are an important factor. David also talked in-depth of the self assessment dashboard which helps to work towards the triangle of care standard.
Next we had a carer who is championed in Southwark for helping to run groups for carers. Her name is Annette and she also run’s her ethnic carers peer group. To be honest, I am a member of her ethnic carers group and is was great to here how she empowers and links other mental health carers. Most if not all carer groups are online due to covid and travel restrictions, but I am sure when things settle down, there might be a room which can host the groups.
Annette also spoke how she was South London and Maudsley’s co-chair for their Patient Carer Race Equality Framework, something I myself have a very close eye on, but not really involved in. To be honest, I usually provide updates regarding race and mental health off my online news site
So it is now the start of Carer’s week 2022. A week I have been waiting for all year and I hope you have as well. What is so special about Carer’s Week? It is a chance to use your experience of providing unpaid care to stand up and be counted for your efforts.
Carer’s Week is a collaboration of many charitable organistions seeking to make life easier for millions of carers around the country. The UK has been through difficult challenges over the years with the COVID-19 situation and now recently the cost of living. We also have the revamp of the mental health act and the new health and social care bill, which seeks to make the systems fairer to carers and those they care for.
However many carers around the country are wary of new laws and bills and to be honest unpaid carers have not come well off from past laws. It is so important the government, local authority and health providers seek engagement from unpaid carers regarding new bills and policies.
Going back to carers week, there are many themes and campaigns taking place. The latest one is on the “A Recovery and espite Plan for Unpaid Carers” There is an open letter to the prime minister signed by seven CEOs of major national charities.
Helen Walker, Chief Executive, Carers UK
Caroline Abrahams, Charity Director, Age UK
Kirsty McHugh, Chief Executive, Carers Trust
Sally Light, Chief Executive, MND Association
Danny Sriskandarajah, Chief Executive, Oxfam GB
Mark Winstanley, Chief Executive, Rethink Mental Illness
Jacqui Cannon, Chief Executive, The Lewy Body Society
Each year, carers week has a theme to highlight the importance of unpaid carers and the challenges they go through. This year is no different and the theme for this year is “Making caring visible, valued and supported”. So why such a theme this year?
Personally it is well known that carers can end up being hidden because they are caring behind closed doors, but there are other reasons for carers to be hidden. Not many people think they are caring and just get on with it, some feel that caring carries stigma and to make matters difficult, health and social care systems often fail to identify carers. It is known that even if a carer is identified then there is always a risk that the carer can slip through the net. The reason for this is caring heavily relies on the relationship to the “cared for”, especially caring for mental illness. If that relationship fails then caring can be at risk and the carer could be at risk.
What about being valued? Is caring valued in society? Is caring valued in the community? To be really blunt about it, I am afraid caring suffers from being valued. Society does not deem the sacrifices others have to pay to care a worthwhile endeavour. It could be that people are compelled to care and that in itself could be the reward, but that reward is countered by the harsh challenges carers have to face, especially financial. Unpaid carers put so much on the line that they themselves risk their own health and wellbeing. It is so important we not only value carers but the importance of caring itself.
What about being supported as a carer? Many carers complain health and social care systems fail to support them. The risk is if the support for the carer is lacking, then this can cause a trickle down effect to the patient or “cared for”. The risk is the patient suffers at the end of the day because the carer is not getting that vital support.
I call for ALL carers to use this week as an opportunity to stand up and be counted, be diplomatic in your efforts, but make yourself known and be proud you have been there all this time to give a care. We are not asking much, just only to be identified, valued and supported.
Just to note, I will be doing a Share & Learn session at Carers UK. I wish to share my knowledge of the experience of care regarding ethnicity, mental health and carer wellbeing using my poetry. If you are a carer, see the link below to book
Welcome back to a summary of chapter 3 of my book “Experiencing mental health caregiving”
This blog focuses on my 2nd book – Experiencing mental health caregiving. The book helps raise awareness of unpaid carers providing care to someone close suffering mental illness. The book highlights the experiences of providing unpaid caring.
For Chapter 3 – “Carer befriending and peer support” I asked carers several questions, but this video will look at the first question that being “What does carer peer support mean to you?
The reason I asked such a question was down to how can carers relate to others when caring can be a private and personal experience. Do carers know they can get support from others to reduce stigma and increase carer knowledge?
Just like the videos I have done on my 2nd book, I will sum up a few responses from those regarding “Carer Befriending and peer support”.
To check out the video summary see link below
So going back to my book, chapter 3 got responses regarding carer peer support, you can see the responses below.
One carer Jacqui Darlington responded
“A carer peer is someone who can offer emotional and practical support to another carer by using their own lived experiences which may enable them to overcome barriers, challenges and fears to achieve whatever it is they may need. They may also be known as Experts by Experience .”
I not only asked knowledgeable carers, but also engaged with mental health trusts.
Nottinghamshire Healthcare NHS Foundation Trust rep responded
“We train people up as peer support workers or carer peer support workers. We are now employing them in the jobs at the NHS trust. I think as a carer peer support worker, the difference between that and pure peer support worker is that the carer peer has lived experience in caring. .”
One last point – Another carer responded
“To me, carer peer means supporting a carer who may be struggling with the sometimes overwhelming difficulties experienced when caring for a loved one with mental health issues. Being there for that carer, sharing personal experiences and showing an understanding of what they are going through”
I asked 8 other questions for Chapter 3,
Have you experienced carer befriending and what did it feel like?
Where should carer peer support be located?
Do you think there is enough education on carer peer support?
Would you befriend other carers?
Is there a line or boundary to carer peer support?
Is there a difference between carer peer support and service user peers?
Why is carer peer support lagging behind?
The responses I will cover in a later video, but to sum up What does carer peer support mean to you?
I noticed that lived experience was critical to becoming a peer carer. To share your understanding and knowledge of the caring role and help those new to caring is vital in forming a connection.
if you are interested about mental health carers, you can buy my book on the link below
The Health and Care Act: six key questions – The Kings Fund answers 6 key questions on the Health and Care act, which should be vital reading for unpaid carers and those who engage with them.
Welcome to a brief update of my february ethnic mental health carer forum. As usual the forum is an engagement platform for those caring for someone suffering mental illness from an ethnic background. I run the forum via zoom with the support of several mental health trusts.
Speakers at my carer forum for February were
Lisa Fannon the Public Health Training and Development Manager for Lewisham updating on Health inequalities
Ellie Wharton Senior Project Manager for Health Innovation Network
Engagement from the Police on mental health
Lisa Fannon presents on health inequalities project
Lisa wanted to update us on the health inequalities project. Since last month there was a discussion with KINARA who attended and talked about the work that they are undertaking in the community, specifically around the Birmingham and Lewisham health inequalities review that is being undertaken with the African and Caribbean communities.
That work has now been concluded and she has received a report. Lisa hopes that they will be able to launch all of that information with an event that’s taking place soon. Lisa reminded that some of us may have received the invite to that event already, but she wanted to ensure that as a community group that we were aware what is happening.
The event will be overseen and organised by Public Health Lewisham. They will also plan to have a additional event following the one just mentioned and it will specifically be for community members. This will be essentially a second in series of events around health inequalities where they are aiming to bring together community groups, and members of the health and social care and health and social care leaders talk about health inequalities. Lisa wants this to be done in partnership with the health and well-being to address health inequalities in Lewisham, and bring together everybody to discuss the situation.
There of course will be opportunities to look at some of the achievements of this work, but also to discuss further action on what needs to be done to tackle health inequalities. Lisa mentioned they will look at what kind of plans that they are hoping to undertake across this year and what future needs is happening at the event.
The event will run in the evening at a Community Centre, where she has sent in advance of this meeting, information about the event to Matthew.
Ellie Wharton presents on the Health Innovation Network
Ellie wanted to tell us about the mental health patient safety network event, which is part of their mental health safety improvement programme. Ellie apologised for the acronyms flying around on the programme, but thanked us for inviting her to join and speak at our ethnic carer group.
Ellie agreed with some members that health inequalities is such an important topic, which is why they have chosen it for their second event to focus for the safety network. Ellie talked about what the Health Innovation Network is, which is an Academic Health Science Network (AHSN) for south London, one of 15 AHSNs across England.
The AHSN exist to speed up the best in health and care. They have been commissioned by NHS England and Improvement to focus on Mental Health Safety. Which involves developing a Safety network and supporting quality improvement work in certain areas (such as restrictive practice).
Their principles are central to how the programme runs: • co-design with people with lived experience • Creating shared learning, connection and Joy • Foundations of systematic QI • Engaging with inequalities where they exist • Working with their foundations and all the good things that already exist
Ellie then pointed out a member of my ethnic carer forum and stated one of the members was involved in the event. This is when the carer member spoke on her section regarding health inequalities and carers.
Ellie then talked about the mental health safety network.
The network is an interactive designed to bring together individuals across the system with the shared goal of improving mental health safety it is co-hosted by the HIN and the 3 south London Mental Health Trusts (South London & Maudsley NHS Trust, Oxleas NHS Trust and South West London & St George NHS Trust). It’s purpose is to create value through sharing learning, creating connections and building energy and capability in safety improvement
The event welcomes people who share the MH safety network’s goals of improving mental health safety. Registration is open to people with lived experience of mental health services, including carers, clinical and managerial staff from NHS, independent and private health and social care providers, commissioning leads, local authorities, voluntary sector partners, police, emergency services and other system partners.
Ellie then talked to us about the agenda of the event.
Mental health Police engagement from South London
The forum gets engagement from the police every now and then. This is mostly because the police have an interest in mind while helping those in a crisis, they want to connect and reassure carers. The police talked about what sites they cover this being Sutton, Croydon and Bromley although its quite a small team.
Their main sort of role and objectives is being a direct liaison with the NHS and mental health trusts. There are other objectives dealing with assaults against NHS, racial assaults against NHS staff where the perpetrators is having mental health issue.
The police then talked about section 136 and how they have been dealing with a lot of escalations. The police think the section is being overused. They think there’s things that they can do as a team to prevent that. There was also some talk about what they can do to help with people out in the streets dealing directly with mental health issues.
The police try and get out and about to the hospitals as well. They have got a police liaison officer that works at the hospital and who deals with crime at other Hospitals.
In a nutshell the police work directly with mental health patients once they were coming into contact with police.
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
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.
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.
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.
A Caring Mind 