IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.
Did you know it is Valentine’s day for Feb the 14th 2022? I am sure you have not forgotten and if I just reminded all those men out there…….better get those gifts quickly.
On a serious note, when we think of valentine’s day, we think of partners or those in a relationship buying gifts for each other. We think of those who are close spending time out at the cinema, restaurant or some place special. We think of those who want to rekindle they love for each other.
Now thats a keyword ‘Love’.
I am going add something to valentines day. As you already might know, I raise awareness for those who are having to care for someone suffering mental ill health. I often think of those, even though I am not providing that sort of care anymore.
I feel, that it is not only out of love that a person is providing that care. As if it was out of duty or out of concern, but a lot of it relates to love and care.
I want valentine’s day be a reminder for those battling to keep someone here for not only valentine’s but the days, weeks, months and more so that they can one day hope the person they care for is recovering.
So valentine’s day is not always a day that we buy gifts, show off our love and feel special. Just like Christmas or other religious holidays, that valentines does have a serious deeper meaning.
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
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
Welcome to a brief november 2021 update for my Lewisham mental health carers forum. The forum is an online forum and provides engagement for those caring for someone suffering mental illness. The speakers for November 2021
Li-ying Huang – South London & maudsley Pharmacist Raymond McGrath – Lead Nurse : Integrating our Mental and Physical Healthcare Systems (IMPHS) for Mind & Body Programme
Li-Ying Haung presents on the importance of medication.
As we all known medication and mental health can go hand in hand, there are times when patients struggle with medication and unpaid families and carers feel there is a lack of information and engagement regarding medication.
Hello everyone. As you can probably tell from my website. I focus on the experience of providing unpaid care, especially regarding those suffering mental ill health. I am in my poetry phase and am to get a large number of poems off my YouTube channel.
My latest poem, which is rather short looks into how mental illness can be catching, perhaps not as bad as what the poor patient is going through, but unpaid carers are not signing and jumping for joy.
You can view my latest poem by playing the video below.
Here is another brief update from my Joint Southwark & Lambeth Mental Health carer forum. One of the carer forums where those who care for someone suffering mental ill health can network and get engagement, info and support from health & social care services.
My carer forums do not just seek engagement from mental health services, every so often carer members request information from accute services.
Speakers for November were
Verinder Mander – CEO of Southwark Carers – Southwark’s carers strategy
Kieran Quirke – Kings College Hospital Mental health lead
Did you know that I run a monthly online carers newsletter? Although most of my focus is on mental health carers, the newsletter focuses on all unpaid carers. The rest of the carer news focuses on Mental health updates, ethnic mental health news and items relating to NHS and national organisations responsible for health & social care.
For January update we have the following news items
Welcome to my November update of my ethnic carer forum. I am slowly changing it from BAME to ethnic although most members who have attended over the years are not that fussed with the title, it is the discussion, focus and engagement regarding the challenges many minority ethnic carers face. The forum covers a large area mainly Lewisham, Greenwich, Bromley and Bexley due to my other carer groups in Greenwich and carer forums in Lewisham. The forum seeks engagement from South London & Maudsley NHS trust and Oxleas NHS trust half the time, but the carer group gets education and empowerment from national speakers regarding race, racism, complexities in mental health and so on.
For the November BAME carers forum the following speakers were
Brenda Onatade – Her Patient Carer Race Equality involvement and update
Samantha Hosten – Importance of Black History month mental health
Lauren Obie – Blacks MindS Matter UK
Lily and Jemma – Maudsley NHS Patient Research ambassadors
Welcome to my latest poem off my poetry project for 2022. My focus is on unpaid carers who look after someone suffering mental illness. Many unpaid mental health carers up and down the country sometimes get frustrated when it comes to being heard. I myself have experienced this, although do not get me wrong. There are times when those in the mental health services can actually support and listen to families, friends and carers.
It is not always the problem of not being listen to or not being heard. Many carers can be confused about what their carer’s rights are. If mental health services are under strain then there will be situations when mental health professionals will not have time for carers and will not often remind carers of their rights.
Sometimes carers are aware that there is nothing the professional can do, but they would still like to be heard on the situation, there might even be a slight chance that something mentioned from the carer can give some hope.
Feel free to check out my poem off my YouTube channel below.
Welcome to a brief update of my South West London Mental Health carers peer group. The carers group covers the 5 boroughs of mental health trust South West London & St George and seeks to empower unpaid carers with engagement, information and a peer environment.
Speakers for the October forum 2021 were
Tristan Brice – London ADASS
Christian Sestier – On involvement of open dialogue at SWLSTG
Alison Crane & Yasmin Phillips (NELFT NHS) – Open dialogue
Tristan Brice presents on London ADASS carer focus
Taken off their website “LondonADASS is an Unincorporated Association that brings together the London based Directors of Adult Social Services (DASSs) to enhance the quality of adult social care across the Capital. Working in partnership with adult social service providers through Proud to Care London, they are committed to improving the recruitment and retention of the adult social care workforce across London.”
Tristan Brice who chairs the carer group at London ADASS was at the forum to speak on what priorites the organisation has for carers. One of the things Tristan presented on was the discounts for carers project, which gives carers a discount on shopping and other necessities. An interesting project is how ADASS will focus on NHS staff retention and how to improve retention. They want to do three things. London ADASS want to promote the sector as a as a place staff want to work. London ADASS also have a project on providing carer lanyards, just like what NHS staff have. There is a focus on raising the identity of unpaid carers as a way to say they should be valued as working for the same team.
When Tristan mentioned this, a lot of the carers eyes lit up as they wondered what the Lanyards would look like.
Tristan also spoke about the online carer groups that London ADASS are hosting, these usually being singing and dancing groups to reduce isolation and increase fun with creativity. Other priorities were on commissioning in regards to safeguarding, developing the workforce, particularly practitioners. The other priority is supporting integration with health colleagues.
You can see the safeguarding video below.
The big focus is trying to not see carers through a social care lens, but through the lens of them as doing an amazing task of looking after someone close to them.
The last presentation was on the success of the carer’s festival, which was online until things change regarding the pandemic. You can see the video below.
Open dialogue presentation
I am fairly well known for promoting the Triangle of care project for carers nationally, but there are other national projects which mental health trusts try to incorporate into their services. One of them is Open dialogue and with a request from carer members, I got support from North East London NHS Foundation trust to speak about how they are incorporating Open dialogue into their services.
First to speak was Yasmin Phillips who is a Community Mental Health Nurse and was the first full time psychiatric nurse using an Open Dialogue approach. Yasmin explained that she works in the dialogue first service at NELFT, and she trained in open dialog in 2014. The Open dialogue is now taking referrals all over England. Yasmin then moved on to explain what Open dialogue is about, which is a reflective approach in increasing dialogue.
Open Dialogue was pioneered in Finland and has since has since been taken up in a number of countries around the world, including much of the rest of Scandinavia, Germany and several states in America.
Some of the results so far from nonrandomised trials are striking. For example, 72 per cent of those with first episode psychosis treated via an Open Dialogue approach returned to work or study within two years, despite significantly lower rates of medication and hospitalisation compared to treatment as usual.
Next to speak a patient involved in Open dialogue in which he mentioned that discussions about the patient on ward rounds is a recipe for disaster, if the patient was not included. He referred to the phrase “Nothing about you without you”. So that just the idea that the patient is involved in that the conversation and it should not be done without them.
So when the involved parties come together, it might just be starting off saying “how do you want to use the time today?”, as non directive as that. And then wherever it goes, it could be lively, all sorts of things. But at a certain point, what one of us might say could be a reflection where they basically press pause on the meeting, and they just turn to each other and share just whatever’s coming up.
This concludes the brief update of my SW London MH carers forum for October 2021
Welcome to a brief update of my Lewisham Mental Health carer forum for October 2021. I know I am behind in updating people about my carer forums, but I have mainly been busy working on my 2nd book. I am glad to say the book “Experiencing mental health caregiving – unpaid carers” has been published and can be bought on Amazon.
For the October carers forum, the following speakers were
Martin Crow – Business Manager – Lewisham Safeguarding Adults Board
Cath collins (carer support officer) – Triangle of care
Eunice Adeshokan (Matron Acute Inpatient Services) – Carer engagement at Ladywell Unit