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.
Do you know Carers Week 2021 starts on monday 7th of June?
The theme for this year is Making Caring Visible and Valued. Which is good news for Southwark since Southwark Healthwatch are running an event where unpaid carers in Southwark can learn about the different types of support available for carers in borough. There will be guest speakers from various services such as Southwark Carers, Mobilise, the Carers Leads from Southwark Council and Coach4Carers to speak to unpaid carers about different ways they support carers.
There will also be a Q&A session after each speaker to answer any questions you may have.
I will be opening the Southwark Healthwatch event and hope to see many carers learn what support they can get for carers week.
Hello everyone. Welcome to the April update of my BAME mental health carer forum. This is one of the 7 carer forums that I run that is specifically aimed at ethnic unpaid carers who care for someone suffering mental distress or mental illness. It is hard for unpaid carers to often get a voice, understand mental health services or even be identified by health and social care. There is a push for ethnic inclusion, but a lot of it is patient centered. So this is one of the reasons why I started a BAME MH carer forum, there are of course more to come.
For this month’s speakers we had the following.
Dr Juliana Onwumere who is a Senior Lecturer and Consultant Clinical Psychologist. She is also the Institute of Psychiatry Psychology and Neuroscience Carer Champion
We were also joined by Edith Adejobi who is Head of Complaints for South London & Maudsley. As mentioned I run several carer groups in different locations under different mental health trusts and it is encouraging to see Head of Complaints engaging with carers. This is quite important, because the CQC are due to attend my carer group and I am sure they would be interested to hear about such engagements. I hope this can be replicated at other mental health trusts.
We were also joined by Dr Vishal Bhavsar who is a Consultant Psychiatrist at the Lewisham Early Intervention Service. Lastly we were joined by Emile wildeman PhD student at the Department of Psychology (IoPPN) King’s College London. Plus lastly we were also joined by Nifemi Ajala who is a Trainee Clinical Psychologist at University College London for the Department of Clinical, Educational, and Health Psychology.
To start off the carer engagement Dr Juliana spoke on the following.
She wanted to talk to us about the need for BAME carer groups. There was a discussion on the term BAME as a catch all term and a discussion on abandonment of dementia carers. Dr Juliana pointed out that her interest lies in how carers/caregivers struggle with psychosis or bipolar. She mentioned there’s people who are experiencing mental health problems. But her particular focus is on racial and ethnic minorities regarding mental health needs. One of the reasons around that is, we know from research and clinical experiences, most people can have very similar experiences when they’re in care. But actually, for those that might be part of the racial, ethnic minority group, there might be different experiences that they have including additional experiences. Dr Julinana wanted to explore with the carers group on some of those experiences, particularly if they are in a caregiving role. Dr Juliana stated sometimes experiences don’t always feel as comfortable to talk about in general spaces, and sometimes they do. But she is particularly interested in what works and why and what would be helpful.
Dr Juliana mentioned her particular kind of work just is focused on carers of people as in families, whether that be mom, dad, sister, brother, whoever is defined. She is interested in how distressed they might be with the experience of care and on if they struggle with mental health conditions. One of the things that often families and carers have said to Dr Juliana is one of their big concerns regards when they are forced to get poor involvement of the services, other agencies, and particularly around the police. Upon hearing this she decided just to be genuinely interested in terms of what people thought about the experience of care and what people would think about having an intervention or having some support from services.
QUESTIONS FROM MEMBERS
One carer was interested in how Dr Juliana will engage with BAME members because there had always been problems bringing BAME MH carers together, plus the history of poor mental health services regarding BAME service users was always under some scrutiny. There also was a lenghty discussion on the police since it is a core subject when it comes to mental health.
Another carer member pointed out that services tend to hiding behind the world of confidentiality and not always being transparent. It is worse when some people look down on black people. There is this aura where because they think you might not understand what they are talking about. E.g it might be too clinical then groups like these will spring up and try to make people accountable.
Edith, Head of Complaints for South London & Maudsley presents
Edith is the head of Complaints and datex at the NHS trust. Datex is the organizational database where they put a lot of different information in, this is that they can triangulate such information that is then matched up to the data. The information that goes in the system is complaints, compliments, incidents and even serious incidents including claims and legal stuff. Those are important concerns, the aim is that as an organization, what they get to see is what goes on at different inpatient wards.
Edith has compiled a list of data done quarterly regarding complaints by the amount of incidents, where in the end, it is this telling SLaM about the overall picture. In the long run it can help identify a pattern to try and help SLaM NHS trust sort of learn from all the information, because as frustrating as it is that sometimes the trust is pushed into resolved an action when something goes wrong. Edith think it’s just as important that we look at where things go wrong and what went well, in this, how can we replicate it for the next person that comes through the door. So staff will also look at things like feedback from students.
Edith used to also manage serious incidents. until about two years ago, one of the things she has really worked hard on. It’s for staff to focus on how they deal with patient feedback. So when Edith got accessed out forum, she reminded that some of us may or may not have people you care for on the inpatient ward. She feels we might have seen that they have a form. The form was the complaints form and she would look at some of the things that people read on that form. Edith would notice things on the complaints form and query why certain things were not achievable.
QUESTIONS FROM CARERS
One carer was interested in how people feedback into complaints especially due to the nature of this carers group, since diverse communities cannot always keep up with basic english, let alone the clinical language of the mental health system.
Another carer was interested in the culture of complaining, They asked how do you manage? or encourage those people who want to complain but fear that there is likely to be no outcome? Or why should they bother to complain?
I was interested in the data Edith had collated, I requested once she has finished with the data that she would share it with the group.
Dr Vishal Bhavsar Consultant Psychiatrist presents on his involvement research
Dr Vish spoke about how he works in the SLaM early intervention services in Lewisham. He takes part in clinical meetings and manages the services, patients and talk to families. The other part of his role is as a researcher. He wanted to talk about both his research and the service, as a research and service development project. Dr Vish wanted to get comments and feedback from the BAME mental health carers forum, on this work. He did mention he had presented some of this work already, because he seems to remember another member has been in the meeting before that when he asked in the last couple of years ago.
The aim is to try and present this work to a range of different groups involving both carers and service users. So we know that when people experience mental health distress, this can take a variety of different forms. Dr Vish pointed to how we are due to hear from his colleague Emily speak about her work around aggression towards carers from service users, in the context of distress is similar to the work that he will be talking about today.
Dr Vish continued to point out that we know that sometimes people experiencing distress can express things through aggression. And sometimes that involves carers, including family carers, but also partners too. It is important that it’s appropriately managed, by the mental health services, so that aggression can be prevented in the future. This is so the carers and family members stay involved with service users and remain to be able to provide care. It’s not just a mental health issue of mental health services, we know that it’s very common for there to be domestic and family violence, and aggression that occurs. There is afterall Research on domestic and family violence worldwide, whether or not they experiencing mental health.
Dr Vish does not think the research suggests that mental health conditions cause people to be violent or aggressive. The reality is that mental health services need good ways of becoming safer. He knows that from his own experience, and speaking to carers and families, as part of his day to day work. If people look nationally, reviews of serious incidents that have occurred, along with the experiences of mental health professionals suggests that mental health professionals often feel out of the loop, and under confident in this in this specific area of violence and aggression towards family, family members and partners. There’s also a worry that mental health professionals, sometimes overly focus on individual services rather than the family. This in turn impacts services ability to be able to respond when there may be aggression occurring towards family members.
Agression and violence is still a problem as I found a news article on how serious the issue is.
One member of the forum believes, that service users are not listening to, and that’s why sometimes the service user becomes aggressive. She feels its not 100% of the time, but she believes from her experience of watching that support for a long time myself, that just not being listened to and sidestepped can be very annoying. The member would like to be involved in Dr Vish’s research, because she feels that she has a lot of experience in that area.
Due to time, there was not many chances for carer feedback, so Dr Vish will be back in May 2021.
Emile wildeman PhD student Presents
She is very close to completing my project. The reason she was here was to remind that ethnic minority carers are very underrepresented. So she wanted to come today just to give a bit of brief information about the study she is doing.
Emily reminded us that if we would like to make contact with her or ask any questions or any further information, she will leave the details with us. The update so far on the research is in many health conditions, including mental health issues supported by close family, relatives or friends. These people can be referred to as informal or unpaid carers. She also know that relationships can sometimes have difficult periods it might include episodes, aggressive behavior from one person to another. So the focus of her research is that she is am looking to see if carers who have experienced aggression from the relative that they care for. She knows that this can be a very sensitive topic, and there is a lot of stigma around mental illness as well as aggressive behavior.
Nifemi Ajala who is a Trainee Clinical Psychologist Presents
Nifemi talked about her study, which aims to explore Black carers experiences when their family member/loved one was involuntarily admitted to hospital (sometimes referred to as “detained/sectioned under the Mental Health Act”). A carer may be a parent, spouse, partner, sibling, relative or friend who is in close and regular contact with the service user. She knows that carers play a crucial part in the recovery and support of the service user, but there is a lack of research understanding the perspectives of Black carers.
She hopes that by listening to the views and experiences of Black carers, this will help us to better understand their needs to result in improved partnerships between Black carers and mental health services.
If your a carer from a BAME background and interested in her research, you can contact her with the following details.
Welcome to the March 2021 update of the joint Southwark & Lambeth Mental Health carers forum. I know its a mouthfull of a title, but just consider its an open forum for those who care for someone suffering mental distress.
For the month of March, the guest invites were the following.
Jessica powell – Researcher from Imperial College London
Ros cumberbatch – South London & Maudsley NHS trust carer lead for Southwark
Annette Davis – Carer peer, activist and BAME carer support.
Claire Parry – Psychotherapist leading on trust psycho therapy
Debika – SLaM Assistant Psychologist for Family and Carers Support in Southwark
PRESENTATION FROM JESSICA POWELL
Jessica is currently carrying out a research project for her master’s at Imperial College London. The research she is doing aims to understand interactions between informal caregivers and their care receivers who are elderly. So an informal caregiver is someone who isn’t officially employed for their services that could be a family member, a friend. Jessica is currently looking at carers from 65 years and up, by having an understanding of these interactions with who they are looking after. The project aims is to understand and better implement features within digital systems that are currently being created for Geriatric Care roles. This being monitoring devices, health devices, etc.
So at this stage of her project, She is at the recruiting stage for the study, to understand interactions between the care receiver and the caregiver. Jessica is eagerly looking for participants who would be able to help her conduct a remote observation study or an interview. Within homes, She of course wouldn’t be visiting their homes personally. At this stage, she was there to see if there’s any issues in the forum that would be up to be involved or if there were any contacts or people she could be put in contact with, to participate in this study with her.
QUESTIONS FROM MEMBERS
I asked if the study was restricted to Tower Hamelets and has she had many participants so far?
Jessica responded that reaching out has been very difficult at the moment because of the pandemic, She has had a couple, but unfortunately, one of the participants passed away. And the second one wasn’t comfortable with the study. So she feels she has exhausted quite a few of her methods for recruiting people, which is why she is here today.
Members were interested in what care giver tasks Jessica was reffering to.
Jessica replied it was down to everyday tasks, e.g. administering medication, helping the care receiver to move around the home. So that could be from the bed to the wheelchair from that bed out of that bed and into a chair upstairs. It all could be defined in the study via a conversation.
Ros cumberbatch presents updates for MH Carers in Southwark
Ros explained she was the clinical service leads in SLaM in Southwark. She works with most staff in the recovery teams. She is also the carers lead for service as well. Ros was her to give us some updates and go through a few things aimed at carers. The first thing is she just wanted to mention that the SLaM Family and Carers Strategy is now in place. Ros was not sure if everyone would have seen that, but it has been agreed by the SLaM board and hopefully it will be circulated.
What services has been asked is for each borough (Lewisham, Lambeth, Croydon and Southwark) to localize the trust carer’s strategy and put things in place as a way of making sure that all teams are aware of the expectations. We need to work according to the carer strategy. Its based around the key thing about making sure that teams identify who carer is or was and making sure that engagement happens.
The aim is with SLaM’s carers strategy it will strengthen supporting carers along with the needs that carers require. Of course things SLaM cannot provide then carers will be signposted to relevant support and services. Ros pointed out that we need to make sure that teams are aware of various resources and in terms of staff we need to make sure that they’re trained, that they feel confident to work with carers, as well around different issues. Ros mentioned an ongoing issue which staff have often struggled with is around confidentiality.
Ros pointed out that it’s making sure that we those kind of discussions with staff, so they feel competent, in terms of when they have to work with unpaid carers. One of the ways that SLaM staff help to fulfill the things in the carers strategy is by having “Staff carer champions”, so these are staff members, who can be on an inpatient Ward or in a community team. They take on an additional role in terms of supporting and communicating and engaging with carers. However it’s not their sole responsibility, but they take the lead on carer engagement in terms of working with the team, to make sure that the teams are up to date with any needs around carers and making sure that team members are identifying carers and supporting them.
Ros also mentioned SLaM’s carer engagement and support plan, since it also strengthens support that carers have in conjunction with the Care Act 2014, so carer identification is not left the the Local authority alone.
Annette Davis presents on carer initiatives.
Annette wanted to give everybody a little bit of information about herself and how she engages with mental health services. She feels as a carer it is important to try and give something back. I think it’s really important that in her ‘cared for’s journey and her own journey that she has become more involved in a number of carer groups and that she feels that it’s been so beneficial to be involved in quite of these carer few groups. Annette co-facilities one of the carer groups with SLaM’s inpatient carer lead.
Annette continued to mention that if you have a loved one that’s on an inpatient Ward, as a carer, you’d would be welcome to come and attend the carer peer support she co-facilitates. It is a very confidential space where carers get to kind of unload and express how they’re feeling and how they’re managing with their loved ones being in hospital. The numbers of carers attending are constantly increasing, which is really exciting and it is also an opportunity for us to also learn new skills and learn the role of a carer which is forever changing.
Annette is also involved with the SLaM “step team” which is a Southwark team on Early invention where they identify and also help support carers, because she feels since she has been through that journey there is so much to share. Annette is aware many carers are in desperate situations, but as carers we should not have to cope in isolation.
Claire Parry – Psychotherapist presents on new psychotherapy projects
Claire felt that it was amazing how carers networked and formed groups together and felt that’s what it should be as it’s real inspiration to other carers looking for empowerment and a special connection. Claire was thinking that other london boroughs could learn from the model of what we are doing and how we doing it.
Clarire was going to tell the carers forum a little bit about what her role currently is, and the new role that she is going to be sort of stepping into, She has worked in mental health for probably about 27 years, and I started off her career as an Occupational Therapist. So it’s really nice to see Ross because actually, Claire has worked with Ross several years ago, where during that time, she worked in inpatient services and Community Services, Claire has also worked in addiction services. Plus she worked in a family intervention service which was also a great service as well as working in therapy services.
Claire found it really hard to focus on a kind of individual model and she was thinking, it just doesn’t make sense to her that we don’t understand people in their relationships, in their communities, in their contexts. So it really didn’t make sense to her that over the years, we have had only little bits of individual models, and that we haven’t really thought about how do we include individuals, communities, networks, families, in a much more inclusive co-produced way. So she kind of retrained as a family therapist, but that it’s still means that its not open to everyone.
Alongside her clinical work, she has just taken on a new post from somebody called Isabel Ekdawi who was a kind of a trust advisor around family therapy and family inclusive practice. So she is going to be stepping into that post in June, but she knows from Isabel worked very hard to think about how the trust can embed family inclusiveness into the NHS trust culture. This is so families are seen as a resource and that families are part of the dialogue, especially at times of change, so maybe at transitions into services. Claire mentioned how Isabel was very passionate about the this kind of model, and so she herself has become passionate through how we in a really meaningful way start to kind of embed more of a family inclusive practice at the NHS Trust.
Claire felt that sometimes it’s about dialogue and trying things out. She wanted to have a little bit of a focus group with everyone at this joint Southwark & Lambeth forum to hear people’s experiences and stories and think about where are the points of transition that are really difficult? And what, from a kind of psychotherapy perspective, can we think about doing a little bit differently? And what what are the things that might make a difference? She is also excited about the triangle of care, because she thinks the triangle of care is really setting a framework to think about how do we work in collaboration. On the back of the triangle of care, there’s some fantastic work that other trusts have done, e.g. an NHS trust in Somerset was given as an example.
Welcome to my latest unpaid carers blog for May 2021. As you might already know, this website focuses heavily on mental health unpaid carers. What I mean is the focus is on families and friends caring/supporting someone who suffers from mental illness.
I run many peer support groups and forums that bring unpaid carers together. The groups are carer led, but try to work with the mental health and social care services. This helps to give unpaid carers a voice and also a chance to understand the complex mental health, health and social care system.
As we all know service users or lived experienced have a range of avenues to express their voice and I guess that is important because they need to, after all they are using the mental health services and the quality of their lives and wellbeing is often tested. All I ask is that friends, families and those emotionally tied to mental health survivors should not be forgotten.
Unfortunately this needs to not only extend to mental health unpaid carers, but those from ethnic communities. Drill down deeper and you will find different levels of quality amongst ethnic unpaid carers. Usually black unpaid carers tend to struggle as their loved ones fair worse off in regards to mental health services.
Below is just some key factors.
Black men were more likely than their White counterparts to experience a psychotic disorder.
Large numbers of black people more likely than average to use high end mental health services.
Detention rates under the Mental Health Act higher for people in the ‘Black’ or ‘Black British’ group than those in the ‘White’ group.
Even with higher detention rates, the outcomes for black service users are still overwhelmingly poor.
Suicide rates are higher among young men of Black African, Black Caribbean origin, possibly due to other complex factors being :-
Access to quality services
Mental health stigma
With all the above mentioned, it does not take long to see the impact filter down to black families and unpaid mental carers. The strain is increasing and black unpaid mental health carers tend to just shrug their shoulders and cope with it all, as they have been trying to cope with complex inequalities while pushing back to avoid the outcomes their loved ones experience. It does not take long for a BAME mental health carer to cross that line to BAME mental health survivor….if they survive that long.
As an unpaid carer, I have experienced the hard road many BAME carers have faced and this is why formed and pushed for connections with many other BAME carers, they do not have to be black as other ethnic carers can find solidarity and identitfy unpaid mental health carers face.
There is still stigma, predjudice, discrimination and inequalities in society, a lot of things have changed and some things have improved, but it would be foolish to ignore the impact of race and mental health.
The candle needs to burn at both ends as BAME mental health carers need to come together and share their experience with the mental health, health and social care services on what is working and what needs to work.
If you are a BAME mental health carer, check out my online BAME carer groups below.
Welcome to my Greenwich Mental Health carers forum update for March. This is the 2nd Greenwich MH carers forum for 2021, since this is a fairly new forum aimed at families and carers who are caring for someone with mental illness.
The forum is not a support group, although there are times discussions may dwell on a supportive nature as members switch to talking about their own unpaid caring experiences. The Royal Borough of Greenwich MH carers forum aims to give families and unpaid carers a chance to talk to Mental health, health and social care services about how they can also support carers. The forum is a chance at engagement, involvement and empowerment for unpaid carers who would like to know what is going on with services. There also might be a chance to influence services when the Royol Borough of Greenwich mental health carers network grows in numbers.
Welcome to a brief update of our March mental health carers forum for the borough of Lewisham. The carer’s forum is chaired by unpaid carer Matthew Mckenzie who runs many engagement and peer groups in South London aimed at families and carers who care for someone suffering mental illness or mental distress.
The speakers for the month of March 2021 were
British Institute of human rights. Wendy Dewhirst SLaM new Community manager for Lewisham.
BRITISH INSTITUTE OF HUMAN RIGHTS PRESENTS.
It is clear that unpaid carers have rights, otherwise we would not have the ‘Care Act 2014’, but what is not clear is how unpaid carer rights are linked into human rights. This is why I am linking carers to understand more about human rights.
Welcome to the South West London Carers forum. One of the new carer forums I co-chair along with another member who is on the involvement of South West London & St George NHS Mental Health Trust or SWLSTG for short. The carer forum is a hybrid of the other carer groups I run. What I mean by that is somethings us unpaid carers meet together and chat about how things have been going for us. Then other times we have selected speakers inform, educate and engage with us about mental health services and involvement in health and social care. The SW London carers forum started last year (2020) mainly as networking and peer support.
For the March SW London carers forum. We are continuing to seek more engagement, especially when it comes to carer strategies. The carer forum is easily one of the furthest reaching group, since SWLSTG covers mental health services in 5 boroughs that being Merton, Kingston, Richmond, Sutton and Wandsworth. A good thing about those boroughs is I have good relations with all the carer centers and one of them is contributing to my new book.
Welcome to the February update of my Lewisham BAME carers forum. Out of all the carer forums and peer support groups I run, this one focuses on BAME carer experiences and challenges. The forum although focuses on Lewisham, BAME carers from outside the borough are welcome since there is a lack of BAME carer networking groups, especially BAME carer-led forums. I might even consider changing the name to Bromley, Lewisham and Greenwich BAME carer forum since I am very active in Greenwich and the actually BAME carer forum is fairly linked to Bromley, Lewisham & Greenwich Mind via the Community Wellbeing Hub.
For February our speakers were.
Dr Shubulade Smith CBE Psychiatrist from South London & Maudsley.
Dr Shubulade Smith CBE is a British academic and consultant psychiatrist at the South London and Maudsley NHS Foundation Trust. She is a senior lecturer at King’s College, London and Clinical Director at the NCCMH and forensic services at SLaM. Dr Shubulade is a heavy supporter of BAME causes especially due to her field and experiences, so it was an honour to have her engaged with BAME carers.
Danielle Perlman is a senior Project Manager at SLaM NHS trust and is passionate about engaging with the community with the South London listens project. More on that later.
Welcome back to another Blog post from Matthew Mckenzie, unpaid carer over in South London, author, activist on my projects called a caring mind.
This Blog post supports the national carer charity – Carers Trust – Young Carers action day for March 16th 2021, but why is it so important young carers get such recognition or even an event to highlight their caring role?
Basically, Young Carers Action Day is an annual event led by Carers Trust. It raises awareness and calls for action to increase support for young people with caring responsibilities.
To see the video of this blog see below.
For 2021, Young Carers Action day will be about Protecting Young Carers’ Futures and making sure that all young and young adult carers get the support they need to go after their dreams.
As a young carer myself…all those years ago, I never gave it a second thought what future I could possibly have, I just kept doing what I was doing, providing care and support. Now with the strain on how schools, health and social care services, it is now even more important to raise that awareness for young carers and also get young carers involved to tell their story and give them the chance and confidence to campaign on what they want for the future.
When young carers think about their future, they think about developing their skills, about what they want to do in their career, their dreams and aspirations. Caring for those you love or support is an honorable role, but it should not define our future and should not hold people back.
With support from schools, carer centres and those who can help make change. Young carers are encouraged to campaign, make a statement and help raise awareness about young carers, especially in schools. Not everyone in schools or colleges can identify or are even aware of young people who provide unpaid care. We have young carers helping or spending large amounts of time looking after someone, which could be helping to keep that person clean, cooking food and cleaning, advocating and being there for that person. All this takes time and energy and we should recognize the added strain facing young carers…..it should be about action and keeping that awareness going.
Carers trust a national charity focusing on making a better future for carers young and old have a wealth of resources for those especially young carers wanting to campaign.
Creating a Young Carer Skills Journal
Campaign Packs with logos
Young Carers Action Day posters
and even just to find out more information about Young carers action day.