Welcome to another blog post by carer activist, poet and author Matthew McKenzie. Leading up to carers rights day, I have another exciting update. On 20th of November 2023, it was South London & Maudsley’s Family & Carers Listening event.

For those who have never attending such an event, I wrote a blog about South London & Maudsley’s previous carers conference.

SLaM Family and Carer Listening event 2022

South London & Maudsley provide the widest range of mental health services in the UK, but it is so important that behind mental health services are families and carers trying to cope and trying to make a difference. So it is important to listen to families and carers.

For those who dont already know, a carer is someone who who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without the carers support.

So what took place at the listening event?

Well after the introduction from Gabrielle Richards MBE who is the Head of Inclusion, Recovery and Professional Head of Occupational Therapy and AHPs. She was also joined by carers Faith Smith and Ann Morgan who helped co-produce the event.

This was a bold step by the mental health organisation to have carers design the event on what carers would want to celebrate.

The theme of the listening event for 2023 was “Looking after you & Listening to you”.

We then had a welcoming video from Sir Norman Lamb who is the chair of the NHS Trust. Norman Lamb mentioned that even though we have a carers event, there still is a long way to go to provide the best support for carers who do so much to support those using the mental health services in South London.

Sir Norman spoke about how SLaM worked so hard for the Triangle of Care scheme to archieve it’s first star for inpatient wards. The South London NHS trust is working towards their second star.

Carers Rights day section

We then moved onto the importance of Carers Rights day from Cath collins who is the Carers Social Worker for the borough of Lewisham. Cath spoke about the importance of carers rights and how families and carers play a key role in the recovery of people with mental health problems.

Cath mentioned the difficultly of stigma and shame around mental health where some carers do not wish to engage with services, but if they do not engage then they can miss out on carers rights. So with Carers Rights taking place on the 23rd of November, it is so important this gets highlighted.

Cath Collins also spoke about the particular strain carers from ethnic minorities face especially the impact of racism and trauma, which can filter down from barriers outside of the NHS. Cath Collins then spoke about planning for the future which was raised by Brenda who is a carer. Brenda was worried about what will happen to a loved one when they cannot care anymore. So learning from birmingham and solihull mental health trust, SLaM engaged with Brenda’s ideas and developed a Planning for the future and emergency planning document aimed at carers.

The last presentation from Cath was the importance of carers assessments

Laughter Workshop Session by Jaycee La Bouch (Zen Laughter)

Carers who planned the listening event wanted something to make them smile or laugh. So it was no surprise to see Jaycee La Bouche from Zen Laughter provide a Laughter Workshop.

Jaycee is a great carer ambassodor for Carers UK which is a national charity promoting carers rights and providing a platform for carers to be heard.

Taken from ZenLaughter website, They say “laughter is the best medicine”. This was quite true for the day as Jaycee took us through several activities of Laughter Yoga. I have never tried laughter Yoga, but after the session I can see the benefits. Carers go through such stressful and difficult circumstances. Carers can be easily worn out and worn down by struggling to provide care. So any form of wellbeing exercise is worth the investment.

Jo Lambert & Matthew McKenzie – Bridging the gap using poetry and artwork.

As a poet and author I often use the power of creativity to develop social change. Sometimes I am happy to just express myself with poetry. Carers can go through so much strain that at times words themselves cannot express the pain and torment. So poetry is a great medium to highlight the issue where other carers can just relate instantly.

There is power through poems and connecting. It does not have to be about pain. A lot of poems can have a happier outlook and be hopeful, but being realistic many carers find themselves in a role that is a struggle.

So Jo and myself are a part of a carer poetry circle to promotes the values of caring. Jo spoke about her lived experience of being a carer and using Art and poetry to bridge the gap. I spoke about the social focus where it is important to connect and network with each other. The caring role can be isolating and lonely. The focus for healthcare can be patient centred, but behind the patient often is the carer, silently coping and carrying on. I wanted to let carers know that they should not just cope, they should also connect with each other. Carers should share experiences, updates and focus on positive activism for a better change. Work with the health and social care services to bring about a better experience.

Jo and myself read the poem “Fairy lights of Hope”, which you can see from the video below.

Connecting, networking and food

Carers took my advice and networked with each other, with a plate of sandwiches and cakes. It makes it so much easier to network if you have food and drink.

The Ortus Learning centre provided excellent refreshments so carers felt at home and relaxed to catch up with each other. It was excellent to see old friends who are going through the journey of unpaid care. Carers also learned about what projects or campaigns they have been involved on.

After Lunch we moved on to another creative session from Annette Davis as she performed a series of songs to entertain the audience. I managed to record one of the songs before my phone ran out of power.

Advanced Choice Documents presentation

The next session was the importance of Advanced Choice documents. An advance choice document allows service users to have a say in how they wish to be treated during a future crisis or relapse, by making professionals aware of their advance wishes and preferences as requests and/or refusals of treatment

The presentation was presented by Kay Burton, Mental Health Law Project Manager, Pauline Edwards, Peer Recovery Trainer, Nick Hunter, Peer Recovery Trainer. The presentation was engaging as carers asked a series of questions about the challenges they face regarding the ACDs.

Rob Frowen carer impact discussion

The next part of the SLaM carers listening conference moved onto a talk by Rob Frowen who is an author. Rob also won the UK’s Carer of the Year award in 2017 for his caring and charitable efforts.

Rob Frowen talked about his caring journey and the impact it made across the UK. He also spoke about his book “The Long and Winding Road”. It is important carers tell their story otherwise no one will know or learn about the challenges carers face.

Rob still continues to share his insight and helps shapes policy at a high level through his local NHS trust “Lancashire and South Cumbria NHS Foundation”. It is encouraging to see the NHS trust have Rob on their board to raise and include the carer voice to a high level.

Poetry group workshop by Ann Morgan

This workshop focused on the power of poetry. Ann Morgan led a session for the audience to develop their own poetry by incorporating a single statement from each person and creating a set of poems.

I was amazed at the result as each poem developed from each table. The poems were creative and inspiring. South London & Maudsley will create a booklet featuring each of the 7 or so poems.

You can listen to one of the poems below

How carers can get more involved Session by Faith Smith

The final session was led by carer Faith Smith. Faith is involved at SLaM and also works at the Health Innovation Network. A video was presented on the importance of carer involvement. The video featured Faith Smith and Aurora Todisco (Lived Experience Partners) and Sophie Lowry, Implementation and Involvement manager HIN (Health Innovation Network).

The HIN connects NHS and academic organisations, local authorities, the third sector and industry, in order to increase the spread and adoption of innovation across large populations, at pace and scale.

It is so important that such organisations include the carer voice as carers need to be included on the journey of health and social care. The video led to brilliant discussions on the importance of carer involvement

National aim of NHS England, poetry and closing remarks.

Did I mentioned I am involved as a carer at NHS England? There are several aims from NHS England and one of them is focused on carers. NHS England have worked very hard to include carers despite the challenges the organisation faces.

I presented an overview NHS England’s framework for carers.

I asked carers that they must hold Integrated Care Systems to account as they must include carers from the framework presented. The challenge carers face will be difficult due to resources getting less. Still if carers want to be included then the need to be present, but specfic carer campaigners and activists cannot be everywhere so they must network and update each other.

Unfortunately I could not finish the presentation because the audience were very keen to find out how they could hold to account health system policies. In the end after closing the the SLaM carers listening conference. I felt the organisation was very inclusive to co-produce with carers and listen to the stories, concerns and challenges carers face.

Thank you for reading.