Here is a very brief update of my South West London Mental Health carer peer group. It is one of the 5 carer forums I do, but is a hybrid of a peer group and an engagement forum. As with all carer forums that I run, the forum seeks engagement from mental health services, since most members are carers of someone with mental health needs.

You might find it wierd that I am doing a november 2021 update at the begining of february 2022, but I have been so busy running carer groups, working on my poetry and helping out engaging with mental health trusts.

The SW london carers forum was packed with speakers including myself

Joy Hibbins – CEO of Suicide Crisis
Rachel Nethercott – Carers UK – State of Caring Report 2021
Diane Fox – University of Kent on experiences of unpaid carers
Matthew McKenzie – Carer Rep and Author – carers and poetry project

We were also joined by Sir Ed Davy’s team who plan to attend when they can to gain some insight into things affecting unpaid carers.

• Joy Hibbins presents on the importance of suicide prevention.

Joy Hibbins an author, runs a charity called suicide crisis, which provides suicide crisis services and trauma services. The reason why Joy wanted to set up a suicide crisis center was because of her own experience of suicidal crisis in 2012, after a traumatic experience. It led to her being referred to the mental health crisis team for the first time. She found that the services didn’t work for her and she could see very clearly why they weren’t working for her. She started to think that what was needed was a suicide crisis center, where people could come every day when they’re in crisis. Except if they were at imminent risk that they could be supported over a period of several hours. She started to think about the ethos and the methods she wanted to use because she felt that they needed to be different from those of psychiatric services.

Joy experienced a huge amount of skepticism and doubt that someone like her could even set up a suicide crisis center. Not only did she want to set up a crisis center she also wanted to set up a center, which would be about early intervention in order to try help prevent descent into crisis. So it was seen as a very ambitious project, particularly for someone like herself, who was a psychiatric patient that had recently been in crisis.

So with the suicide crisis center, people can either self refer or be referred. The referrals are from NHS, police charities, and all kinds of other agencies as well. From 2012 there was huge doubt and skepticism to where things are, plus it has been an extraordinary journey for the team in a very unexpected journey. where the work is having an impact in countries like New Zealand, where the Ministry of Health in New Zealand contacted Joy’s team, as they were devising their new national suicide prevention strategy to find out what they could learn and how they could use some of the learning that they took from Joy’s team in their strategy.

Some of the points about their suicide crisis center is that it’s in a central location, easily accessible, it’s not a drop in center, but they can see people at very short notice. So sometimes they state to people not to think of them as an emergency service. Altough Joy thinks there are times where they have to be and that there is a need to be able to see people within half an hour, whether that’s them coming for the service or the service going out to them.

Very recently Joy has published this 40 Is the suicide prevention pocket guide book. There’s a slight irony that it’s called a pocket guide book because she thinks When they planned the book with a publisher, it was going to be a pocket guide book. But in the end she wanted to also make it a really comprehensive, detailed book that would be full of relevant information.

Eventually it became 220 pages. So it’s much more of a comprehensive handbook. But she liked the idea of a pocket guide book because one of their clients made this wonderful quote a few years ago, and he said that he carries us in his pocket with him at all times. Joy thinks that really highlights the strong connection that they build with their clients so that even when they are not with them, they feel connected with the team. Joy always has kept this in mind.

Joy Hibbens will be engaging more with our SW London group members regarding suicide prevention workshops and talking to families and carers for 2022

See more about Joy’s work below.

Suicide Crisis Service

Suicide Prevention Pocket Guidebook

Rachel Nethercott – Carers UK – State of Caring Report 2021

The next speaker was from Carers UK and Rachel has been very helpful engaging with my carer forums to update us on what Carers UK has been doing.

This section was probably an interesting section for Sir Ed Davy’s team as they want to report back on the groups findings plus questions that were raised.

Rachel is the Senior Research and Policy Officer with carers UK. She was at the group to present some key findings from Carer’s UK annual State of caring survey, and also how these findings inform Carers UK practice, and policy. Rachel mentioned that some of us actually may well have completed the survey, in which she thanked us. She felt that our time added to the kind of painting a picture of the key findings.

She recommended if we have time that we go and read up the report. Rachel then gave us a quick overview of the report. It’s actually the largest survey of unpaid carers in the UK. Carer’s UK conduct this every year, except for 2020 due to the pandemic. Carers UK did another research instead. But normally, they do this every year. So for the year 2021 it was completed by over 8500 carers, the vast majority of them are currently providing care. The kind of stats she showed in the presentation are for people who are currently caring.

The people who complete the state of caring survey are more likely to be female, more likely to be women, more likely to be disabled. than the general population, and also likely to be at the heavy end of proving care than the average carer. Almost half of everyone that responded to this survey have over 90 hours a week.

Some people who completed the survey were also generally well connected to services and support, they identify as a carer in where they knew their rights and the support that they were entitled to. Unfortunately some carers who filled out the survey were less likely to be working, which can be your average carer. So only around a third of the people completing the survey are either in full or part time work, which is less than what Carers UK had expected to see. The average person who goes filling out the survey were British women. It’s still interesting findings, and it tells us a lot about carers as Carers UK would love carers from all backgrounds to fill in future surveys.

Diane Fox – University of Kent on experiences of unpaid carers

Diane Fox works at the University of Kent at the Persons Social Services Research Unit. She is working with a colleague from the London School of Hygiene, or medicine, on a project regarding diverse experiences of unpaid carers across the caring projectory, this being CCAP short.

Diane came her to give us a bit of background knowledge about the projects, and then hopefully get some of our input.

Diane mentioned that the research often doesn’t follow the same carers over time, and doesn’t often look at differences between subgroups, which ties in with what she is presenting. It’s a question about not just looking at White British carers that are female but strengthing the design to include other carers.

For this study, they are trying to look at how or why some carers maintain a good quality of life over time, and how or why others do not. The reason they want to do this research is to inform the support services for carers, because we know that people’s experiences of caring can vary quite widely. For instance, someone with a degenerative condition is likely to be very different to caring for someone who’s got a relapsing mental illness, caring for a spouse or a partner is likely to be very different caring for your adult child, or your aging parent. So it’s got four research questions.

Diane’s researchers looked at what’s associated with unpaid carers quality of life over time.
Does this differ between subgroups of carers?
What support services or other things enable carers to optimize their quality of life?
What barriers to frequently excluded care space in accessing services?
How can these be overcome?

So that, again, ties in to what Rachel was talking about that some groups are less likely to identify themselves as a carer or access services. So there’s five stages to research that feed into one another.

So first of all, the researchers did a scoping review to look at previous research and identify what’s associated with quality of life over time, they found that so many things are in that research that they needed to narrow down the scope of the project to keep it manageable. So for the second stage, they held a series of stakeholder workshops, which they invited a nationwide group of parents and service users, local authority commissioners, service providers, and community and voluntary organizations. At the workshops some of the things that they said in the open discussion where people would firstly outline their caring circumstance, identify it, identify areas of difficulty, and the sources of support that they found helpful.

So in the open discussion, the attendees spoke about particular issues but they were facing particularly related to the pandemic because that was very pertinent at the time just come out of one of the lockdowns. Diane presented how their input fed into the content of the questionnaire. So this is what the researchers got from the first bit of discussion they had with people.

Next, they asked carers to rank topics in order of importance, which was shown on a graph that shows what their preferences were. So more than half of carers said social support was the most helpful. Diane spent quite a bit of time presenting more of the research where we had a Q&A session to help inform Diane our experiences.

Matthew Mckenzie’s Poetry Project

As I have mentioned already, I am working on my poetry phase regarding the experience of care. I read out one of my poems call “On Alert” at my carers peer group and you can view the video of my poem below.

This concludes my November update of my SW London carers peer group