Monthly Archives: September 2021

Bromley, Greenwich & Lewisham BAME Carer Forum July 2021

Welcome to a brief update of my BAME carers forum for the boroughs of Bromley, Lewisham and Greenwich. The focus is one of the 6 carer forums that focuses on discussions, awareness and campaigns regarding unpaid carers from an ethnic background specifically caring for a ‘loved one’ suffering mental ill health. Forum members do not have to have someone using the services, it could be they are caring for someone who might not be using the services of South London & Maudsley NHS Foundation trust or Oxleas NHS trust.

The BAME mental health carer forum update for July had the following speakers to engage with carers, although not in order.

  • Lola Jaye (psychothearapist, author, speaker) – Why race matters when it comes to mental health
  • Emma Wakeman (St Andrew’s Healthcare)- on The Missing Voices: Carers’ Experiences of Section 17 Leave (Mental Health Act 1983)
  • Kuldip Kaur Kang (West midlands trust) – on Religious and cultural needs of BAME mental health inpatients request
  • Rachel Nethercott – Carers UK focus on diversity unpaid carers
  • Leonie Down (SLaM Lewisham Head of Occupational Therapy and Partnerships Lead ) – Update on Patient Carer Race Equality framework
  • Dominic Parsons – Bromley, Lewisham & Greenwich Mind on their diversity initiatives.
  • Professor Shirin Rai from Warwick University – On the Impact of covid-19 on bame carers

Judging by the speakers, you can see the BAME carers forum is held online and is also attended by mental health NHS trust staff working to understand the issues that affect ethnic unpaid carers and patients.

Lola Jaye Presents

Lola started her talk about how those from ethnic backgrounds experiences racism in everyday life, she pointed out that a lot of people at the carers forum may remember last year, where globally the Black Lives Matter movement began a lot of traction, plus several incidents that happened in the final or the Euro 2020 football match.

Many things have pushed the importance of diversity to the forefront including the impact of COVID-19 on ethnic groups, plus how it forced many to be online at work. Lola talked about the impact of racial trauma and it’s affects on mental health. Lola gave us several examples e.g. How many times have we heard a racist joke? How many times we seen racial slurs on the walls or been a victim of overt or even covert racism or racial profiling, sometimes even unconcious bias has an impact on diverse communities.

Lola mentioned as a psychotherapist she has noted many of her clients experiencing issues and a feeling of powerlessness because of what they have to be able to live with and these are things that cannot be ignored especially if health and social services have to takle the problems. The community must be a part of it.

Lola moved on to querying “what is self worth” to forum members. Lola raised how the media has bombared people with messages that challenges their self worth, especially young black people. Certain things in the media has lead to racial trauma. There were examples of you are British to the point where you serve the country and then can actually end up as the ‘other’ where you could be the ‘N’ word. Lola pointed out the positive experiences of the nation coming together to support black players in the Euro football campaign, but unfortunately incidents led to the importance of tackling racism online and offline.

Lola moved on to talk about the large scope of battles ethnic people have to take on. Discrimination globally has led to black people taking on more challenges be it inequalities in health and social care, racism, lack of resources regarding institional racism and more. Lola suggested people need to pick their battles because to tackle so many things will cause a mental strain. We would have to choose our battles. Discrimination can come as Little things, or big things? that those from ethnic backgrounds have to live with every day and god knows how the impact has affected those who unfortunately loose their mental health. Lola spoke more about institional racism in education, the criminal justice system and other places and why it is so important organisations especially health and social care become anti-racist organisations, but they need to work with the community although there is a problem with a power imbalance.

More of Lola’s work can be found on the following sites.

https://www.bbc.com/future/article/20200804-black-lives-matter-protests-race-mental-health-therapy

https://www.adventureinblack.com/blog/mental-health-in-the-black-community-during-covid-19

Kuldip Kaur Kang presents on Religious and cultural needs of BAME mental health patients.

Kuldip who is a social worker for a west midlands NHS trust presented on her research about patients detained on an impatient setting. Emma conducted a lot of interviews and stated that it can be a challenge to know what issues are affecting mental health patients due to not understanding the reality of things.

The one of the main reason Kuldip chose her research was due to her ethnic background and the experiences she has had in the past. She felt concerned and wanted to highlight such issues, but was given the freedom to do so. She wanted to highlight the relation to our religious and cultural identity, but for our benefit at the forum she focused on the carer’s aspect of her research. Kuldip mentioned that although stats can be boring, they are useful in highlighting and evidencing research and it came to no surprise to people that stats show that people from a BAME background are detained from the mental health act is this is disproportionatly high.

Kuldip mentioned about the pressures on the ward, which can led to decisions overlooking patients culture and religious needs. These could be the high turnover on the wards, staff under pressure and lack of leadership. Religion is one of the things that can be important to inpatients, because of how they cope with their mental health although religous views can sometimes blur mental health understanding. Religion and cultural needs cannot be overlooked on a mental health setting. Kuldip spoke how it is so important to involve families and carers in their ‘loved ones’ care because they are more likely to understand the cultural and religous needs especially if the mental health service is under pressure already it would make sense to increase involvement from the patient’s circle of support network.

Kuldip also spoke about the importance of training staff to be more aware of patients needs, but she did stress that when staff feedback about training that they were not sure how to tackle certain issues. A good example of a patient washing their hands to pray, but was challenged because they suffered OCD. As mentioned religous practices of patients can blur into their mental illness, but it might be the one last thing the patient was holding on to. Kuldip also mentioned her research did include other ethnic communities from europe who used the services.

It was mentioned how staff on the wards found it so helpful that families and carers could help communicate cultural and religious needs on the wards, especially if the patient just could not communicate their needs. Kuldip did admit confidentiality did get in the way, but there were good reasons for this. Kuldip gave her recommendations of her study to the forum, which were well recieved.

See below for more of Kuldip’s work

https://thinkahead.org/news-item/research-by-think-ahead-social-worker-finds-that-inpatients-religious-and-cultural-needs-often-go-unmet/

Leonie down updates on the Patient Carer Race Equality Framework (PCREF)

Leonie Down who is the Lead Occupational thearpist for Lewisham under SLaM started off by mentioning that PCREF is something that South London & Maudsley are focusing on in South London, and there are other Mental Health trusts around the country that are also involved in this. These being East London Mental Health trust, Birmingham & Solihil NHS Trust and Manchester mental health trust are involved in the NHS England & Improvement pilot.

Leonie mentioned that in the context of the community around inequalities and systemic racism, this gives hope, to people’s idea of trying to really challenge the power of organizations that proposes these big NHS sites, and sort of takes through a process of maybe the next year or so to identify how NHS can be better and addressing inequalities. Leonie felt it could demonstrate competency within all of the work SLaM do, so she thought maybe it’d be helpful summerize how staff, patient & carer and the community at large work together to identify what competencies on how do well SLaM is doing on BAME experiences of services.

Leonie updated on how we can have an equality in needs, which is being delivered in any partnership with the people that are seen as stakeholders. Secondly, she felt it really educational for the current meeting, discussing excellent knowledge, awareness, and cultural awareness. SL&M are going to find different experiences and initiatives and come up with a position where in February next year, they can kind of launch a proposal on what to work towards.

Emma Wakeman presents on The Missing Voices

Emma talked about the paper she wrote and the 4 main conclusions and findings which came out of the research paper.

https://www.york.ac.uk/spsw/news-and-events/news/2021/s17mha/

The first finding was about the emotional impact of anyone who’s caring any shape or form on how they can relate to emotional impact with the fact that carers felt their voices were not picked up enough.

If things did not go well for carers or they thought that they have been let down, then complaints would certainly appear in the services.

The second finding was on social systems and the affect of what happens if a person was taken out of their social system, what would be the result for carers. Emma mentioned the type of section had a major impact on how patients coped when they were removed from their social system.

The third point was on how carer’s sacrificed their time and energy into providing care and how section 17 dealt with such sacrifices. The 4th part of the paper was examing what support was given to carers and how sometimes there were challenges on getting that support.

Rachel Nethercott presents on Carer’s UK BAME carer’s initiatives.

Rachel Nethercott opened up her talk about how she works with CARERS UK in the policy and Public Affairs team. They have funded by the COVID-19 support fund to run a project with carers trust for Three years, and they will be looking at the experiences under representative carers from marginalized backgrounds. So those are LGBTQ carers, Black and Asian and older aged the carers particularly those who are digitally excluded and also carers of faith. So those groups are part of the project because they believe in dis-proportionally affected by the pandemic. The project itself will look at experiences during COVID and the measures beyond COVID.

Rachel wanted to talk about the BAME carers part of the project and how they are going to be taking a look at building on existing research for the project. Carers UK want to be able to work with services, make recommendations on areas to improve and how best to develop any good good practices that is working well. Carer’s UK also want to learn from those services and practices that do include carers. So for the three years to both carer support services and health and social care services, we hope those services will be more accessible as being tailored, beneficial and with recommendations.

Rachel gave an outline of the project and also allowed attendees to ask questions or feedback on the community project services.

Professor Shirin Rai from Warwick University presents

Professor Shirin wanted to share with us their new research. Prof Shirin did point out there is a problem of BAME communities not being involved in research, but also a lack of BAME communities carrying out research regarding race and mental health.

Her project is called “care, caring, and carers” which is why she thinks the main aim of our project is really to look at sort of care for older people in BAME communities, in Coventry and Leicester which are two diverse and wonderful cities. The research will look at the conditions and impact of COVID.

Professor Shirin really appreciated Lola emphasised the connection between Black Lives Matter movement with the experiences of BAME carers, because we all know the crisis affecting BAME communities, this has been experienced so many times.

Professor Shirin wants the project to try to connect with the carer and the caree. So for all the peoples care, the research also wishes to include both unpaid carers and paid carers. Prof Shirin feels the government has a habit of not funding well for unpaid carer while at the same time trying to learn from the community.

For more information about Professor Shirin’s new research please check the link below

https://warwick.ac.uk/newsandevents/pressreleases/exploring_the_impact/

Thanks for checking out my brief update

Joint Southwark & Lambeth MH Carers forum July 2021

Welcome to the July update of my Joint Southwark & Lambeth Carers forum. The forum is focused on unpaid carers who care for someone suffering mental ill health.

Speakers for the July forum were

Carol Ellis: Promoting her son’s book regarding surviving suicide

MP Helen Hayes – Speaking about carer updates for the boroughs

Dr Natasha Tyler – An associate Researcher from University of Manchester

DR NATASHA PRESENTS ON HER RESEARCH.

Dr Natasha started off by saying that as a researcher from the University of Manchester at the patient safety Translational Research Center. She has been working with Matthew probably for about three or four years now. He’s been involved in quite a bit more research and she was just going to give a little bit of an overview about involving carers in quality and safety research. Dr Natasha wanted to speak a little bit about involving carers in quality and safety research.

Dr Natasha is interested in transitions of care, which is the movement of patients through the health and social care systems. She works with different stakeholder groups to develop interventions which might find solutions to different problems. She has developed consensus on key topics and tried to highlight the patient and caregiver recent academic work. The Key groups that she works with at the moment are mental health and carer residents. So some examples of some research she has been doing recently are interviews with stakeholders. When she is studying a topic, she tried to get lots of different perspectives, so carers, patients, healthcare professionals, charities, academics, and for the two things she has been studying most recently has been safety and discharges from mental health hospitals, specifically in transfers between care homes and hospitals.

Dr Natasha has also been working to develop a care and measure of safety at care homes. Where input from users can be picked up on a question they can fill out. To assess how safe the carer feels their loved ones are at that particular care home. This is in terms of some key patient safety priorities and research, which looks at how safety is perceived by different groups. This looks at the differences between what safety means to carers and service users as opposed to perhaps health care professionals. So this is a paper that’s just been published, and it’s called, “What does safety and mental health care transitions mean for service users and over stakeholder groups”. The key difference in this was that safety and mental healthcare transitions was perceived differently by service users and carers compared to researchers.

So what’s the healthcare professionals and researchers focus on the clinical aspects of safety? This tended to be things like suicide, self harm and drug misuse. Services users and carers are much more interested in social and human behavioral things. So loneliness, emotional readiness for discharge, and the way the services work together. So in professional communication after discharge, these are all the key things that matter to service users and carers much more than the traditional safety indicators that used in research.

Dr Natasha is not saying that these aren’t important, she just found that safety had a much wider definition of safety for what service users and carers percieved. This research is just in the process of being published. So this was about the effect of COVID-19 on quality and safety and mental health care transitions.

Carers described feeling left out of communication regarding discharge planning and left alone to cope with family members who were not necessarily ready for discharge, because the initial perceived rapid discharge of service users at the beginning of the pandemic is distressing. There’s a quote from one of the carers, which was partly used for the paper’s title.

The carer went on to say “It was also sudden, because we literally had a phone call on a late Tuesday afternoon saying that he was being discharged and they asked us to go and collect him. He was handed over to is that a call? I asked. Well, I asked specifically, is this due to COVID? And they said, Oh, no, literally, it was all quite surreal. And I came to the psychiatrist saw from his office, and he came out to say goodbye, and good luck, it was all a bit odd.”

So this was data that was collected at the very start of the pandemic where different groups receive safety and care transitions and in particular, and there’s lots of really interesting insights from the carers.

So for Dr Natasha this is why this kind of involvement is so important in quality improvement research has provided really important insight into health system processes and how it made them feel when it involved challenging situations with their loved ones, but still they are often able to recall and articulate details in a different way to service users who might be transitioning through healthcare systems at a time of crisis or distress, or human capacity.

RESPONSE FROM CARER MEMBERS

One carer member responded ” She thinks what is left out is the impact it has on the carers, because when you have your “loved one” in hospital for a certain length of time, and then all of a sudden you’ve been told that they’re going to be discharged. People don’t realize the anxiety that it brings onto the carers, because in the groups that she runs, which is the carers group, she is always hearing that they don’t get access to where their loved ones medication is, what is the next step for them. So she thinks it’s really important that carers are involved in terms of their well being, because if your loved ones in hospital and has to come back home, then that also brings on some anxiety. So it’s about giving the caregivers the support, and signposting.”

Another carer member mentioned “The whole problem with psychosis is lack of insight into illness and if the inpatient facility doesn’t have an insight or an understanding of what’s gone before, and what the carer has been through, then there will be no actual understanding of the reticence that, I mean, even accepting, you know, your very Dear loved ones back home. People feel very cautious about this. It’s not that you don’t want them home, but you want them home well, so that the whole situation doesn’t escalate again, and you have to go through the whole thing again, because that is traumatic, for a lot most carers, it’s traumatic, the sectioning process is very, very hard.

Carol Ellis speaks about her sons book

Carol who is an unpaid carer for her son wanted to tell us about a book that came to life while the lockdown, which was all about how her son wanted to write in order to help others, like himself who might be suffering with anxiety and depression. It’s a book that took every ounce of strength for him to actually write and then show that there’s a way forward with mental health, in where you can talk to people and can open up to people. The book can provide you with tools which help you along the way.

Both Carol and her son felt that it was it was worth actually putting putting pen to paper. Her son actually got this book published in Amazon, and they are very proud of getting this far. So the book is called “A gentle breeze” Unfortunately Shaun was not at the meeting to talk about it as he has to really dig deep to explain the story. He has tried to kill himself a couple of times. So Shaun had to write about his suicides as well. Carol explained in the sense that he’s a lot better now and is doing very well at the moment. So he’s working hard to help others, he can’t work, because he’s so is not well enough panic attacks, with the anxiety and the depression. So Shaun thought the best way to actually help others and be a carer without actually working as a carer was to write his experiences down.

Carol explained that the book is a very powerful book that will help carers as well as the cared for, because it shows just what the person is going through doing the journey at this stage. Sucidality is known as being the silent killer as depression. Too many people lose a battle with it so he’s trying to get them to get the help they need. Shaun really hopes that this will change things for the better. Carol wants to get it out as as much as far as they can to as many places. She has been in touch with her MP recently, and the MP is going to take it to London with him and talk about mental health issues to the constituents as well, Carol thinks that it will be quite a powerful way of dealing with it. Carol just wanted to let us know that this is what Shaun is doing and he is a very proud man. Because it was hard. And it was hard for her to push him all the way. Because he wanted to give up a number of times. The book wasn’t easy to get publicized if you don’t realize just how many battles you have to go through to get to get things publicized.

MP Helen Hayes speaks

Helen thanked Carol for sharing with the book with the group. She felt the book sounds like an amazing achievement for Shaun to have written about his experiences. Helen feels that one of the most significant things in terms of just breaking down stigma around mental health is and building understanding is people being open to talk about what they’ve been through themselves because out of that comes the realization that mental health struggles are extremely common and tough.

Helen mentioned such issues touch every family in one way or another and the more we can normalize that conversation, the more we can make sure that people are getting the right support and that services are designed in the right way. Helen mentioned that there is a real opportunity to make a difference in terms of how to get the word out. She felt it sounds like we are doing a really good job of getting around different mental health forums around the country. Helen hopes that Carol’s MP will be able to help with getting the word out in Westminster, perhaps they could help with doing some things locally because she thinks this is all about that critical mass of people who’ve heard about the book and read about it, and then pass it on regarding the knowledge and recommendation to lots of lots of other people as well.

Helen was really glad to be with us again and thanked us for all of our important work. she felt great to see that matthew was involved in many more mental health carers forums in different parts of London as well, compared to when she last met him, Helen wanted to talk a little bit about some of the things that happened during the lockdown that have affected carers. Helen also mentioned that to be honest, she does not have a huge amount of information about what has happened in other boroughs, but she does know a little bit about some of the support that was been provided over the last year or so. She thought she would touch on just three things. The first is the the Mental Health Act review, which is a really important kind of policy and legislation, development progressing slowly in Parliament at the moment. The second is vaccinations.

Helen was also keen to hear from us whether there are such kind of issues and challenges that we are experiencing around accessing vaccinations that whole area, which is so important at the moment. The final thing Helen wanted to talk about was the Social Care Reform, and where we see informal unpaid carers within that. Its about trying to make sure that unpaid carers are fully recognized, and that legislation builds in better support for unpaid carers, as it goes through Parliament.

Helen wanted to acknowledge how difficult the last 18 months has been, for many of us caring for loved ones who have mental ill health. A lot the lockdown has focused on us being told that we had to stay at home, the cancellation of many of the features of normal life and the activities and the routines that we all enjoy was hard for everybody. She felt how much harder it was for people with mental health conditions for whom often those activities are what helps them get through the week. Helen mentioned if you are caring for somebody with mental health, then that routine is part of the respite that can get you through the week as well. Helen mentioned she knows how difficult that’s been for lots of her constituents who are caring for loved ones with mental health conditions.

This concludes the update for my Joint Southwark & Lambeth Mental Health carers forum.

CommUNITY Assembly – Lambeth Town Hall

The Black Thrive Lambeth Partnership is inviting Black individuals, organisations and allies that are striving for an equal society to join our CommUNITY Assembly on 18 September 2021 for honest discussions about how together we can achieve real change for Black communities in Lambeth.

You can book from the link below.

Register for event here