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.
QUESTIONS AND STATEMENTS FROM MEMBERS
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.
Nifemi Ajala – Email: nifemi.ajala.18@ucl.ac.uk
