Category Archives: Uncategorized

Top 20 Different Types of Carer peer groups

Welcome to another blog post from Carer activist Matthew McKenzie. THis is a blog post I always wanted to do, since for many years I been running carer groups. If you want to watch the in-depth version regarding carer peer groups, you can watch the hour long video below.

In this blog post, you can explore the diverse landscape of caregiver peer support groups, focusing on building resilience, skill-sharing, and overcoming stigma. You can also discover how these groups provide a safe space for growth, learning, and healing through shared experiences.

Understanding Carer Peer Groups

Carer peer groups are an essential, yet often misunderstood aspect of caregiving. Despite their complexities, they offer a lifeline to many caregivers, providing much-needed support, understanding, and personal growth opportunities. These groups are not just spaces for venting or sharing the challenges of caregiving; they serve a multitude of functions aimed at enhancing the lives of caregivers.

What Are Carer Peer Groups?

At their core, carer peer groups are a collection of individuals, typically caregivers, who share common characteristics and experiences. They come together with specific interests, interact in ways that foster support, understanding, and personal growth. These groups are more than just social gatherings; they are structured environments where caregivers can develop resilience, accountability, and coping skills.

The Importance of Emotional Support

Building Emotional Resilience

One of the primary functions of care peer groups is providing emotional support. Caring for a loved one can be isolating and emotionally draining. Groups focused on emotional support aim to reduce this isolation and help caregivers build coping skills. These groups facilitate a space where caregivers can explore their emotions, such as trauma, anxiety, isolation, depression, and anger. By doing so, they help mitigate the risks of developing mental health issues.

Encouraging Personal Growth

Emotional support groups go beyond mere conversation. They encourage self-discovery and growth, helping caregivers reduce the stigma associated with their role. These groups work to build a sense of community, providing a platform for storytelling and healing. The goal is to turn emotional struggles into opportunities for growth and resilience.

Mutual Aid and Resource Sharing

Collaborative Problem Solving

Another critical type of carer peer group is the mutual aid carer group. These groups are all about collective action and shared responsibility. Caregivers come together to offer advice, support, and understanding based on their shared experiences. They advocate for social change and share resources, knowledge, and skills to better manage their caregiving duties.

Developing Lifelong Skills

Resource-sharing carer groups focus on maximizing the use of resources and skills among caregivers. These groups encourage practical support, such as helping with everyday tasks, and foster a culture of giving and gratitude. By doing so, they help create strong, supportive networks that caregivers can rely on.

The Role of Accountability

Creating a Culture of Accountability

Accountability is a crucial element in many carer peer groups. These groups ensure that caregivers remain motivated and responsible in pursuing their personal and professional goals. They offer consistent check-ins and progress reviews, helping caregivers stay focused and committed.

Encouraging Empathy and Understanding

Accountability groups also emphasize the importance of empathy and understanding. By fostering a non-judgmental environment, these groups help caregivers build compassionate connections and develop deep listening skills. This creates a supportive space where caregivers can feel safe expressing their thoughts and feelings.

Promoting Empathy and Safe Spaces

Safe and Non-Judgmental Environments

Creating a safe, non-judgmental space for caregivers is essential. These groups provide an environment where individuals can freely express themselves without fear of criticism or harm. The focus is on healing and recovery, reducing isolation, and promoting self-compassion.

Enhancing Communication Skills

Such groups put a high priority on confidentiality and empathy, which are vital for building trust among members. They work to improve communication and interpersonal skills, helping caregivers better navigate their caregiving roles and manage conflict within their relationships.

Empowering Caregivers

Building Confidence and Resilience

Caregiver empowerment groups focus on fostering a sense of control and belonging among caregivers. They promote resilience and encourage caregivers to overcome obstacles. These groups help build strong social networks and challenge social norms, providing tools and resources for skill development.

Encouraging Personal Development

These groups often serve as networks of encouragement, where members motivate each other to achieve their goals. They focus on building confidence, self-belief, and resilience through peer mentorship and role modeling. This helps caregivers take on leadership roles and further their personal development.

Specialized Carer Groups

Alternative Therapy and Recovery

Some carer peer groups focus on alternative therapies, providing non-professional and voluntary alternatives to traditional therapy. These groups might use methods such as art therapy, mindfulness practices, or peer coaching. They aim to enhance communication skills and offer a space for healing through creative expression.

Problem Solving and Growth

Problem-solving care groups help caregivers brainstorm solutions to common challenges using shared experiences. They encourage critical thinking and offer emotional and motivational support. These groups also focus on resilience building, helping caregivers develop emotional agility and self-awareness.

Conclusion

Carer peer groups play a vital role in supporting caregivers. They offer emotional support, facilitate resource sharing, promote accountability, create safe spaces, empower individuals, and provide specialized support. These groups are complex and require significant effort to establish and maintain. However, their benefits far outweigh the challenges. By participating in care peer groups, caregivers can find the support, understanding, and personal growth they need to continue their vital roles.

Despite their complexities, carer peer groups are essential in fostering a supportive environment for caregivers. They provide the tools and resources necessary for caregivers to thrive, ultimately enhancing the overall quality of care provided to their loved ones. As the demand for caregiving continues to grow, the importance of these groups cannot be overstated.

Of all the things – Last week for crowdfunding campaign

During Hoarding Awareness week 2024, I did a blog post on the excellent animation short that raises awareness of Hoarding.

The animation film is called ‘Of All the Things’ , which is partly funded by the BFI NETWORK, that delves into the complexities of a mother-daughter relationship amidst the challenges of hoarding disorder.

As a carer with lived experience of caring for someone with mental illness, I understand how the animation can offer a fresh perspective on the journey towards understanding and connection while aiming to raise awareness and combat the stigma surrounding this often misunderstood condition.

It is now the last week to support the project via crowd funding. You can access the following ink https://greenlit.com/project/of-all-the-things

For more information about the project. Check out the BBC News link below.

https://www.bbc.co.uk/news/uk-england-leicestershire-69053179

Kings College London study into Breathlessness

Latest research focus for carers who support someone suffering from breathlessness. Kings College London are keen to explore some of the issues carers can face when the person they care for is breathless. This can be a symptom for people with heart and lung problems, respiratory diseases and cancers. It can be quite stressful and frightening for carers especially if they haven’t had support or training on how to cope with this.

If interested please contact eleanor rochester – eleanor.rochester@kcl.ac.uk

Opportunity for Lived Experience involvement – Oxehealth

Oxehealth is a health technology company focused on inpatient mental healthcare. Oxehealth is looking to extend their co production activities to bring together a wider range of voices from both patients and carers. They are planning to run both in person and online focus groups to deep dive on specific areas of product development. There may be further opportunities for participants to extend their initial involvement and join their core expert by experience group.

Who should attend? Welcome to both service users and carers with experience of inpatient mental health settings. Experience of Oxehealth vision based patient monitoring system is desirable but not essential.

What the sessions will cover? Focus group 1: Patient monitoring – privacy and choices Aim is to get feedback to help prioritise initiatives designed to enhance privacy, agency and choice for patients on inpatient wards when using vision based patient monitoring systems. Focus group 2: Developing sleep reports for patients and carers Aim is to get feedback on design and content for reports for patient and carers which provide information on how patients have slept.

Will I get paid for attendance? Yes, compensation will be paid at the rate of £30 per hour. Each session will last for 1.5 to 2 hours. Reasonable travel expenses for face to face attendance (with receipts provided will be compensated up to the value of £30

When will the meetings be held? We will hold 4 sessions with c 6 – 8 attendees each in March/April (2 on each focus group topic). The sessions will be c. 1.5 hours each and will be on weekdays either a morning or afternoon session. 2 sessions will be in person in central London; 2 sessions will be online on Microsoft Teams

What work will I have to do in advance of the session? Before each session, we will meet online with each prospective participant for 30 min to 1 hour meeting to provide an opportunity for participants to find out more about the technology and the company.

To express interest please contact Karen West – karen.west@oxehealth.com

Research opportunity for carers of people with ‘psychosis’ – University of East London

Welcome unpaid carers. There is a new research Opportunity from the University of East London.

Carers can play a vital role in supporting someone with psychosis, particularly when an inpatient admission is needed, but unfortunately are often left out of important conversations. I’m hoping that this research can go a small way towards including carers’ voices in the discourses around restrictive practice/the development of inpatient services.

Alison Byrne who is a Trainee Clinical Psychologist at the University of East London is looking to reach people who are:

  • Over 18 years old
  • A relative or other carer (including friends) of someone who experiences ‘psychosis’ (e.g. delusions, hallucinations, or other unusual experiences; a formal diagnosis is not necessary)
  • Their loved one has had at least one admission on a UK inpatient ward relating to these experiences

See Poster below

Caring for a loved one with cancer research

Caring for a loved one with cancer? The university of East London study offers 4 free (online) hours of coaching in exchange for a 1 hour interview.

The study aims to support carers of cancer patients through coaching conversations, and is part of a Master’s dissertation investigating the wellbeing effects of coaching. The research has been ethically approved by University of east london’s Psychology Ethics Committee.

You’ll be asked to participate for around 5 ½ hours of your time, and the sessions can be slotted around your availability. The coaching is confidential.

To book a 30 minute consultation to see if this is right for you, contact Jo at u2097099@uel.ac.uk

Triangle of care – Learning about what is out there

This blog post is from carer activist and author Matthew McKenzie. I am involved in many things and often campaign and raise awareness of those caring for someone with mental illness or cancer. One of groups I run focuses on Carers Trust Triange of Care membership updates.

It is important families, friends who are unpaid carers who care for someone using mental health services be kept in the loop. It is even more important that carers be involved in shaping triangle of care at their local mental health service. All too often carers can be seen as a hidden resource, perhaps seen as someone behind the scenes quietly getting on with it.

Carers should not be hidden, it is important to know what your organisation is doing to improve the lives of unpaid mental health carers.

Our next triangle of care community meeting will be on July 31st. See poster below.

Realising the transformative potential of AHPs

Welcome back to another blog post by carer activist Matthew McKenzie. Quick question. Do you know about Allied Health Professions?

Well, allied Health professionals work to provide the community with the best support and health benefits using their skills and expertise.

Allied Health professionals work in many different settings and they do not always have to be based in hospitals. There are around 14 all doing their best to serve the community.

Art therapists
Dramatherapists
Music therapists
Podiatrists
Dietitians
Occupational therapists
Operating department practitioners
Orthoptists
Osteopaths
Paramedics
Physiotherapists
Prosthetists and orthotists
Radiographers
Speech and language therapists

Still, serving the community is not enough. It is about including the community and putting people first. This is done through co-production, leadership, innovation and bringing out the best in the AHP community. The health of the community is a challenge if the health of the environment suffers, so it is important to prepare for a greener future and cleaner future.

The Allied Health Professions have set their strategy for england, which you can view below.

There also is a new video to promote why AHPs should continuously improve their contribution to high-quality health and care services.

As a carer activist, I know full well that high quality care can have a positive impact. We all have a part to play, just as we all want healthier lives. Users of health services want their views taken into account and this can lead to a better strategy.

Thanks for reading.

Joint Southwark & Lambeth MH Carers forum July 2020

Maudsley_Hospital_Main_BuildingWelcome to the July update of the MH carers forum.

The forum Encourages carers of those with mental health needs to get more engagement from services and to understand how mental health services work. Carers can also query them and compliment what they feel are going well. In attendance were Southwark Carers trustee, Lambeth carers hub mental health carer support. A few carers especially involved ones. The carer inpatient lead for Southwark and also the Carer lead and head of occupational service lead for Lambeth. The forum was also joined by staff and a governor from Guys and St Thomas to speak a bit about their mental health and carer’s strategy. We also had a young person demonstrate a new online application called “kooth”, aimed at young people.

Lee Roach from Lambeth Lambeth Hospital spoke about updates from Lambeth Hospital. He mentioned to the forum about staff who are carer champions over at the hospital. Staff work in a team effort, but not all of them are occupational therapist by background. Lee mentioned the different roles some of the staff do as some of them are running carers groups, some of them were maintaining carrier information boards.

Some events are being planned over at Lambeth hospital for carers. A recent event had a Junior psychiatrist, and occupational therapist and pharmacist talk to carers about questions that they had about medication and about diagnosis for their loved ones. Previously Lee wanted to establish a Carer champion in each of those six teams that were working out of the the Lambeth area. They made a little bit of progress and two or three members of staff were identified as carer champions with others who were keen to be involved.

lambeth-hospital

They even had a carer champion at community level, but unfortunately COVID-19 hit and services had to be put in lock down and what took place then was that the teams were reorganized and merged to cover services. Service leads were expecting a significant reduction in staff availability. So at the moment they are working to operational crisis levels.

Lee continued to state that for the 21st of August they plan to organize a meeting for carer champions. So they will get members of staff together alongside carers and aim to invite involvement from carers to update them on regarding the COVID period. The event will also share good practice and also to advise the new carer champions about what the expectations are for them.

The Lambeth hospital carer and services lead spoke how important that they make sure that the clinicians are thinking about carers and also to make sure that they are aware of all those people that are involved in that person’s life as much as possible.

It is also important that staff record carer’s details on SLaM’s patient record system so that should anything happen to the patient then the clinicians able to stay in contact with carers. Lee mentioned it is important carers are offered engagement and support plans for their needs, not just the need to services and talk about what some of the needs they might have.

Lee excitedly mentioned the that they are developing some exercise classes for carers. These exercise groups are being organized so that information can get to the clinicians and the carers in Lambeth as quickly as possible. On the 7th of September they are going to organize some events for the community mental health teams in Lambeth to raise the profile of carers and the needs of carers and I’m looking for volunteers and people who are on the involvement register. Lee felt the most effective way of communicating with clinicians about the needs of carers and the importance of involving carers, in the care of their loved ones, is for carers to tell their story and to hear that narrative of the carer’s experience.

The update impressed the chair of Southwark carers who was interested to know more about carer champions. I also raised the idea if Lambeth are looking to employ a Lambeth carers inpatient lead as for what Southwark have. I also wanted to know more about the role of Anna Penn-Carruthers who is a centre lead at Streatham living well centre, she was unable to attend the forum, but will come at a future date. I also wanted to know the situation with COVID-19 affecting Lambeth services.

For some time no carer is allowed on the Lambeth hospital site and that was the same for the Maudsley site as well. So no physical visits allowed. That’s now changed and carers are able to visit. But it needs to be by appointment now they have got rooms allocated on the Lambeth hospital site for the carer’s visits to take place. The thing is COVID-19 has made things much more restrictive. Lee feels the challenges for everyone over this period has been utilizing virtual meeting spaces and in how they are using the software mircrosoft teams. Things are moving back more to where they were before, but they are still very limited in terms of how staff visit people’s homes, organizing meetings and limiting the amount of unnecessary contact.

Kooth application

Next up for the Joint Southwark and Lambeth carer forum was Chanelle from XenZone to speak about Kooth which is an online mental wellbeing community. Kooth gives young people access to a community of peers and a team of experienced counsellors. Kooth is accessible for any young person who lives works or studies in Lambeth from the age of 10 to 26 years old.

download

The good thing about Kooth is that it is free mental health support, but obviously not a replacement for the NHS or any mental health services. Kooth also has a link of different services that young people can contact when they’re in a crisis, which would be national services, because Kooth is not a crisis service is also something that people can use alongside with those those resources.

Shanelle showed us a quick video about Kooth, which can be seen from below.

Video of Kooth demonstation

After the video Shanelle explained what it’s like to sign up to kooth via a demonstration. She mentioned that when you sign up to kooth that it is very simple. So as shown in the video, it is an anonymous service. So they don’t ask people for their names or their address or anything that identifies them. Kooth only asks for basic demographic data that’s taken such as their gender, their ethnicity and age. And the reason they ask for their age is that they can make the content appropriate to the age of that young person.

Kooth has many different links where one of them allows a young person to look into the different counselors, as they can see different biographies about them about whatever they’ve chosen to speak about. Kooth is available in the boroughs of Lambeth, Greenwich, Bromely, Bexley and Southwark for the ages of 10 to 25.

Staff from both South London & Maudsley and Guys & St Thomas were interested to developing links to Kooth for referring to it as an additional resource.

Guys and St Thomas Carers Strategy

Next up were staff from Guys and St Thomas regarding their carer and mental health strategies. I feel part of the aim of this forum is to allow carers what services, policies and strategies are being done to aid in supporting their role. We were joined by Jackie Waghorn who is their new Mental Health lead for that trust taking over Caroline Sweeney. We were also joined by Sarah Allen who is the Head of Patient Experience at Guys and St Thomas talking about their carer’s strategy.

Guys-Hospital

Guys and St Thomas also sent Nikki who is one of the dementia, clinical nurse specialist on dementia and delirium services and they are inpatient based who their main role is to provide care and support to patients and their carers and staff within the inpatient settings. Nikki spoke about how they support patients by ensuring that staff carry out the principles of the St Johns campaign such as ensuring that flexible working, flexible plans are committed. Other things done are getting out carer surveys out to carers so that they can really understand that they have a voice and staff can understand what carers needs are. The staff normally carry out these carer’s surveys when carers come into the wards to visit their loved ones, and then staff can go through the survey with them. Otherwise, they send out carer surveys via posts and staff collect them.

Next to update the forum was Sarah Allen who is Hear fo Patient experience, she came to talk about the NHS trusts carer’s strategy and carer’s policies that are under review. There are 3 priorities so far which the trust will be looking to review.

1. Providing carer’s network days which are for local residents in Lambeth and Southwark, plus GSTT staff who may also be carers. The aim of these network days is to develop carer’s skills further in sort of key areas is what’s known as key skill stations. So sort of little mini sessions on different aspects of caring for someone. So that ranges from things like providing personal care and mouth care, to things like on dementia and delirium.

2. The other priority is they have a carer’s passport at the trust, but it’s not quite as well embedded as they would like. But really the role of that document is to support staff in understanding and recognizing the role of carers and the part they have to play in terms of the care and sort of providing information and understanding on the condition needs and preferences of the patient.

3. The final priority really is around for GSTT staff. This being that some of their staff are carers and is pretty much recognizing that their own staff do you have caring responsibilities as well often in addition to being parents, for example, that may also have young children that may also have a responsibility. They’re looking after an older parent or somebody else within their extended family or Friendship Circle.

The chair of Southwark carers was interested to hear more about Guys & St Thomas’s carers passport. She was also interested in the networking days.

Next we had Jackie Waghorn speak about her role as the the new mental health lead at Thomas’s. Jackie has been in post for six weeks, so is pretty new and still trying to find her feet in the organization.

st thomas

She has has come from Croydon, where she was doing a very similar role running health services. Prior to that. she worked in offices and mental health trust for many years, managing crisis and mental health services and working in crisis and mental health services.

Guys and St Thomas Mental Health Strategy

Jackie spoke more about GSTT mental health strategy which was launced on Mental Health Day and the strategy lasts up till October 2022. In developing the strategy, this strategy was devised by her predecessor, Caroline Sweeney. And in devising this strategy, she did consult with a number of different stakeholders, including patients and carers. Jackie was not sure what any of the forum members were involved in that.

What the strategy does and in, in supporting carers is not quite specific, becaue it’s basically divided up into three sections which are patients, people and partnerships. And it really is just thinking about how they can involve carers and how they can support carers in each different section. Jackie is looking to basically develop a group which would oversee policies and things to make sure that mental health is considered in everything that GSTT do. Next we heard from Georgie Smith who has recently recruited into a new role which is Mental Health Improvement lead.

Her role is and the work that I’ll be doing is is carrying out several projects under the name of Lilly Sterner, who was a patient who left a legacy. In those projects she will focus around improving mental health awareness and improving mental health delivery within the trust of guys and St Thomas. Then Paula one of the governors from Guys and St Thomas NHS Trust. She was interested to hear if there was enough support within the community for mental health and also onthe strategies that the trust will be administering?

I was interested in how the trust engages with patients and the public and if there were staff at guys who has a focus on carers. Sarah mentioned that they try quite hard to actually involve patients and carers in sort of the redesign of pathways and redesign of services. This is done via the patient and public engagement team. It was also mentioned that there has been a number of staff trained up to become what’s known as mind and body champions, the Mind Body Program from kings health partnerships, has done a lot of training for keep just staff focused mental health awareness. So they have mental health champions and obviously part of mental health is care awareness. It will be good to see if GSTT can work with the joint Lambeth and Southwark MH carers forum as their new Mental Health lead continues her role, as the forum aims to raise the profile of mental health carers.

Southwark inpatient carers lead update

The last update was from David Meyrick who is the Southwark carers lead for inpatient wards. David reported that all the Southwark Wards are open, were wards that were moved to other boroughs are now back in Southwark. There is other good news that the carer champion roles are becoming more relevant and active. SLaM have also just finished a project on one of the Wards listening in action project. This has been a project to make the ward more family friendly. There has also been an improvement to the waiting area the visiting area.

The waiting room has been redesigned search cordoned off to give a bit more privacy and social distancing plus two families can to visit at once rather than a portable partition so it’s a bit more than welcoming and relaxing area and and also a lot of work on the leaflets and literature produced for carers and help make it more informative and more family friendly from that perspective.

We also had an update from carer peer supporter Annette on how she is co-facilitating carer support groups online and how the peer support role empowers her to support families and carers.

Lewisham BAME MH Carer Forum June 2020

10177241_747738765268892_5890142387668348507_nIt has been a busy month for July and I have been meaning to update on my Lewisham BAME Mental Health carers forum for June. I have to honestly say I have finally gotten around to do this, even though the July BAME forum is tomorrow. Lets first give a quick introduction of this forum.

I can feel it can be difficult for patients to know about what mental health services are in place in a certain area, it can be even more difficult for carer’s to get an idea what is out there, especially if there are forms of mental health stigma. but this move in BAME community, sometimes the BAME community can go through a hard time and that does increase mental health issues as opposed and also problems with services that can be seen that we need to make made aware of and how we can work together.

With these issues it helps to have a forum that allows engagement from services. That’s because services change often, especially health services, mental health services and Local authority services. The forum also allows a chance for carers to get some forms of education to learn from those services.

For the June forum we had my MP Janet Daby attend, along with Josephine Ocloo who is a Researcher, and also ‘Patients for Patient Safety Champion and also on the National Patient Safety Steering Committee for NHS England. We were also joined by Donna Hayward who is SLaM’s Service Director for Lewisham mental health services. We also had Sophie from Healthwatch Lewisham who is the patient experience officer, talked a bit about her role as in to listen to residents on their views about health and social care.

Official_portrait_of_Janet_Daby_MP

MP Janet Daby

Janet thanked us for the invite to the forum so that she can update members and hear from BAME carer members. She was happy to see lots of familiar faces on the forum. Plus she felt that the forum was important for carers from the BAME background to be supported through engagement from services.

Janet certainly agreed that there can be stigma in the BAME community when it comes to mental health sometimes there is an embarrassment or shame around stigma or sometimes even people don’t really recognize or or get a sense of how they will and and can be supported. Janet Daby updated the forum to also speak about the Coronavirus where Lewisham has provided any support. Janet mentioned that she recently met with the chairman of SLaM sir Norman lamb and is are going to have more ongoing conversations in futher meetings.

Janet feels there’s so many things that she has spoken to him about and but the main one that I spoke to about was the lack of of professionals in engagement with family members where somebody has a mental health problem. There is an issue regarding the lack of empowerment for family members to be involved with the care and the decisions of their loved ones where they’ve got mental health problems. She feels health professionals should be embracing that relationship, rather than being surprised it exists, and also rather than making decisions without having those conversations with those family members. There needs to be more training on getting health professionals to engage well.

She has lots of concerns around where people live in overcrowded situations or where people live in unsuitable conditions and how that will exacerbate the feelings of them being isolated, just as carers are isolated during the coronvirus infections. With all this problems it is no wonder that mental health issues are incresing. Janet mentioned she was also concerned how young people were coping during this difficult period. She felt hard for those people who are unable grieve for their loved ones when they haven’t been able to attend funerals or do their usual goodbyes.

She feels it is really important that when the government is looking at this and she will do her hardest to increase the voices of the BAME communities being heard. Especially in accessing the right type of therapeutic support. Janet mentioned about the £5000 application funding scheme, which was also advertised off her Twitter account where carer members asked her specific questions.

parliament

After a while, we got several excellent questions from the carer forum. Where one carer member asked about if the government understands the difference between a worker and an unpaid carer. He felt the reason why he had to ask was because he never hears anything from the government to say what they’re going to do for the unpaid carers who are suffering in silence at the moment. Janet did agree more could be done to raise awareness to the government about carer identification.

This is not only a problem with carer identification but also BAME as there has been so many reviews including the McGregory review, the Windrush scandal review and others. Janet queried when will the government get on and work on the recommendations of these reviews. She felt that we do not need people’s sweet words or their facial expressions of concern that they really care about the community, because if they cared about our community, then they will put these recommendations in place. She feels there is a lack of BAME people being at certain reviews and it is so important BAME communities keep telling their stories, but with these recommendations especially from MP David Lammy and others hardly any get passed.

Going back to my Lewisham BAME forum, I am open for patients and service users attend and we got a good question from a service user who does peer support on some of SLaM wards. She feels that patients get a bad deal when it comes to their ward rounds. A good example is there can be so many people at those ward rounds and that there is a misrepresentation of that service user needs. There is a lack of patient advocates to be there as a voice to represent them and not for other people to tell them.

Another carer talked about her mother from a different culture and background and felt that while her mother is in hospital, there is some difficultly visiting her. Some other carer also from a BAME background spoke about the reasons why she feels the BAME community gets so many mental health problems she was also unhappy about the levels of BAME community at the front line contracting COVID-19.

Janet responded to the forums queries and questions and agreeing that the BAME community should not be pigeonholed and stigmatized with labels. Plus the problems of PPE not fitting BAME staff and the problems of poverty, which can lead to lower immunities. She feels BAME communities need more access to education, housing and especially health. She also feels there needs to be prevention of the police racial profiling of our community and that there is also a problem with the rise of the far right in the UK.

One of the service user members of the forum stated that she was at another meeting yesterday and felt that we need to stop thinking as a separate unit. We need to think of us as a big community, and this is some of the things she find as a service user as well, is that there’s that separation of hospital care and community care. She would like to see those two come together as a whole and that the care that you can get to can be continuous and not separated.

josephine-ocloo

Dr Josephine Ocloo

We next had Josephine Ocloo speak about her research and then Donna Hayward from SLaM give the forum members service updates. Donna felt it would be appropriate to talk more on BAME cultural awareness. Donna mentioned that although SLaM knows that a lot of their patients, carers and staff. She feels like there could be more discussions on what what it’s like to be black, or from a BAME background.

She want people’s experience of mental health to be different, but Doona feels unless we have the conversation about diversity in a very open way, SLaM may be in a position of being defensive and still feels we are not getting it right for our community.

There is a problem in the NHS, that we revise strategies and that we talk about research, where lots of things that the forum raised she recognised. Donna mentioned she recently had a meeting with a commissioner who said that SLaM needed to do a research project. Donna felt that we do not need to do a research project. What SLaM needs is to know what the issues people tell us and how those issues start. We get don’t don’t spend 10 grand doing a research project and spending 10 grand putting something right.

Mental health tends to be thought of as it shouldn’t be. Mental health is across all SLaM’s services and sometimes SLaM don’t always get it right. Donna mentioned that she is one of those people who’s very vocal about that. She feels mental health is in our community across our community and across our services, including our GPS, including social care, including education

This is the update for June’s Lewisham BAME MH Carers forum