Hello fellow unpaid carers. Kings College Institute of Psychiatry, Psychology and neuroscience are launching a new group. The groups will be facilitated by Madeleine Oakley who is the Senior Teaching Fellow in Mental Health Studies at Kings College London. Madeline also has experience of care as she is also a family carer of her young adult son who has autism, who has a learning disability and mental health problems.
Please see poster below and you can also contact Madeleine at madeleine.oakley@kcl.ac.uk
Hello fellow mental health carers. Have not blogged an update in a while regarding my carer forums. Probably due to being busy publishing my 3rd book on mental health carer poetry. More on that later. I have also been developing online courses aimed at mental health carers. I am now preparing to work on my 6th online course “caring for someone with a mental illness”.
Back to this blog update. This is an update from my monthly ethnic carer forum. A forum for those from ethnic backgrounds caring for someone with mental illness.
Speakers
Rev Dr Cameron Langlands – Head of Pastoral & Spiritual Care at South London & Maudsley
Carl Nando – Amenity Care update
Rubbia Ali – Black families involvement in new elearning.
Rev Dr Cameron Langlands – Head of Pastoral & Spiritual Care at South London & Maudsley
Did you know I also facilitate the West London NHS trust ethnic carers peer group? We recently had the Head of Pastoral care visit and engage with carers from the black community.
So it was great to have Rev Dr Cameron Langlands attend and engage with our community group. Dr Cameron looks after the chaplaincy service at South London and Maudsley. Dr Cameron takes care of service users who are inpatients and will often see people in community, but only if they are tied into the SLaM services. Dr Cameron would love to engage with more patients, but there are only three chaplains in the full time role. Plus they have four sites to cover, as well as some community settings.
They also have a part time Imam who works with them on a Tuesday. Plus a part time Deacon who works at ladywell unit over in Lewisham on Thursday.
Dr Cameron has been in the NHS now for just over 20 years in chaplaincy, and what they find particularly within mental health chaplaincy is that when people say they want a specific chaplain, often they don’t. Because they’re looking for is someone who is an appreciation as to where the patient is coming from. That would be who has the ability to sit and listen to them, especially on the difficult situation that they’re in. This is where the nursing staff are trained to do that, but unfortunately, they are often incredibly busy. So that allows those within the chaplaincy team to be able to augment the clinical team and do that.
The team are running a training program for transpersonal therapists who are in training. They focus on more spirituality based transpersonal side of things, and have to do 100 hours within psychiatric setting. So most of the work now has a chaplaincy volunteer as well. They can dovetail into the service. The other thing they do is that they can offer volunteers in the befriending service that run via the volunteer coordinator as well. So they tie in with people in community who have either been discharged from service but still want that link or are being looked after by their GP or their community mental health team.
Dr Cameron has also asked for a befriender in a new service that runs twice a year, the befriender service is now online, the service can also be accessed in person. The course is ran over a 10 week period and it covers all aspects of mental health.
Dr Cameron mentioned that In South London, they have managed to secure funding from the from NHS England, and have started a bereaved suicide service, which is aimed at those who have been bereaved by suicide, or those who have been witnesses to suicide or attempted suicide. In that team, they have got a bereavement manager, two support workers and a couple of counselors, and they are the only service in the UK to have two community champions employed in that service reaching out to people on non faith based basis.
QUESTIONS FROM CARERS
Can there be a conflict on spiritual conversion regarding a patient’s faith?
How is spirituality being used as a way to be inclusive and, and bring out these outcomes to be more favorable towards those ethnic communities using those services?
Is there a spiritual and pastoral policy? Is it inclusive of families and carers?
Carl Nando updates on AmenityCare update
Next was Carl Nando’s turn to update the carer forum on his project Amenity care, which looks to support carers with a package for the person suffering ill health. Carl talked about how Mental health is one of the key pillars for Amenity Care and its clients.
Carl talked about the struggles he had in the past supporting his parents and the racism they experienced. Carl feels this is an issue for today. Carl mentioned how tough it was to provide that care and how it inspired him to set up his own business that focuses on advocacy and support for those suffering ill health.
Carl thinks it is very important to have more black own mental health businesses tailored to the community, but there are struggles and getting access to business support is difficult. There were lots of questions from carer members on how Carl can raise the awareness of black mental health and at the same time run a business.
Rubbia Ali presents on Black families involvement in new elearning project
Lastly it was Rubbia’s turn to present to the ethnic carers group. She is a research worker at King’s College London. She spoke about her current study where they just received funding and they are now working on a project tailored to black families. It is called Black families involvement in E-learning. This is being led by two psychologists at King’s College London, by Dr Valentina Cardi and Dr Juliana Onwumere.
The study has two aims. Firstly, to understand the experiences and impact of the COVID-19 pandemic on the carers of children and young people (6-24 years) from Black minority ethnic communities in the UK. The second aim is to explore with carers of children and young people from Black minority ethnic communities, the type of information they would find helpful to include in an online course that aims to offer carers skills to support children and young people with their mental health and wellbeing. The Be FINE study will employ a mixed methods design, using both online surveys and individual and group-based interviews.
The study has two parts; an online survey and focus groups. To participate, individuals have to be parents or carer of a young person from a Black racial minority and the child has to be aged between 6 – 24 years. We then ask that the participant fills out the online survey, this should take around half an hour. The participant will receive £15 amazon voucher for participating. Following this, the participant will have the chance to also sign up to the focus groups.
This concludes the brief update for April – phew! I am so far behind!!
Carer Activism : My latest online course for carers. This one is on applying activism for carers who struggle with engagement from health and social care. Only £2 via paypal.
Here are two more poems from my upcoming book “The Poetry book of mental health caring”.
The first poem focuses on wellbeing for carers who are caring for someone suffering mental illness. To be fair it does not actually have to be mental illness, but the main point is the person is thrown into becoming a carer.
The next poem is more psychological. The poem called “The Mirror” asks the carer to reflection on their identity, especially when the carer is judgemental about themselves. I certainly was very judgemental about trying to provide unpaid care and at times I still am critical.
Welcome to a brief update on my joint Southwark & Lambeth mental health carers forum. I run this forum online via zoom once a month. It used to run from Maudsley hospital, but had to move it online due to the covid situation. I am guess I am so lazy to move the forum back to the mental health hospital. Will have to see.
Another update is I have started my volunteering at my local accute hospital trust, so I will be having a carer stall for families of patients to visit me. Lewisham & Greenwich trust have been helpful in giving me a spot to engage with families and carers. There will be lots to work towards, but it certainly is a good start.
Going back to my Joint Southwark and Lambeth mental health carers forum. The speakers for March 2022
Claire Parry – Maudsley Psychotherapist on updates at psychotherapy projects at the NHS Trust
Rebecca Davies & David Meyrick – Developments for families & carers in the borough of Southwark
Annette Davies – Carer peer groups and PCREF.
Natalie Marshall – Community peer lead and support for unpaid carers
Claire Parry presents to the group
Clare Parry is a family therapist. She took up the post in June 2021. This being the role of lead family therapist in Soutwark. This includes being a trusted advisor around family therapy and family work across the NHS trust. So part of her role is looking at where services may have family therapy and family work and where they don’t. Her focus is on more of the psychotherapy side rather than kind of carers assessment side. A lot is done to make family members and carers comfortable with the service they provide.
Part of her role over the last year, was working really hard in the psychotherapy services and reduce waiting times. There has been an acknowledgement that waiting times for therapies are far too long. So they have been piloting a project, which means that they are offering other interventions, while individuals, couples or families are on the waiting list for therapy
Clare is very interested in the stories that many carers have to tell, So she wants more carer engagement to events. Claire hopes that psychotherapy can make a different to others who don’t get to talk when someone’s unwell. Clare talked about how some major carer systems have been influcing the NHS trust services, those being the Tree of Life and the Triangle of Care. She also talked about Open Dialogue.
Rebecca and David presents on community transformation project
A lot had been covered by Clare on community transformation, but it was also included at this part of the forum. Rebecca mentioned that a new team, that being a low intensity team has just started. It has just been open for a couple of weeks and the rest of the services will be moving over. There was also more talk about the new mental health hospital build from Lambeth to Southwark.
Rebecca also mentioned that there will be a north and south primary care mental health teams, and the four CMHT’s which will work with most of the service users across them across the borough of Southwark. Rebecca moved on to talk about complex care services, which will include assertive outreach, rehab teams, low intensity team and early intervention team. Plus community mental health teams are going to be merging a lot of the other services.
David who is the maudsley inpatient carer lead for Southwark talked more about Triangle of Care. He admitted things had been slow due to the previous covid-19 epidemic, but with South London & Maudsley working towards their first star in the triangle of care membership, things are picking up. David mentioned how each ward has a carers champion and how they are engaging with families and carers on the wards. David had a strict regime of carers being included in patient notes especially in surguries. Support for patients had to be increased and families & carers are an important factor. David also talked in-depth of the self assessment dashboard which helps to work towards the triangle of care standard.
Next we had a carer who is championed in Southwark for helping to run groups for carers. Her name is Annette and she also run’s her ethnic carers peer group. To be honest, I am a member of her ethnic carers group and is was great to here how she empowers and links other mental health carers. Most if not all carer groups are online due to covid and travel restrictions, but I am sure when things settle down, there might be a room which can host the groups.
Annette also spoke how she was South London and Maudsley’s co-chair for their Patient Carer Race Equality Framework, something I myself have a very close eye on, but not really involved in. To be honest, I usually provide updates regarding race and mental health off my online news site
So it is now the start of Carer’s week 2022. A week I have been waiting for all year and I hope you have as well. What is so special about Carer’s Week? It is a chance to use your experience of providing unpaid care to stand up and be counted for your efforts.
Carer’s Week is a collaboration of many charitable organistions seeking to make life easier for millions of carers around the country. The UK has been through difficult challenges over the years with the COVID-19 situation and now recently the cost of living. We also have the revamp of the mental health act and the new health and social care bill, which seeks to make the systems fairer to carers and those they care for.
However many carers around the country are wary of new laws and bills and to be honest unpaid carers have not come well off from past laws. It is so important the government, local authority and health providers seek engagement from unpaid carers regarding new bills and policies.
Going back to carers week, there are many themes and campaigns taking place. The latest one is on the “A Recovery and espite Plan for Unpaid Carers” There is an open letter to the prime minister signed by seven CEOs of major national charities.
Helen Walker, Chief Executive, Carers UK
Caroline Abrahams, Charity Director, Age UK
Kirsty McHugh, Chief Executive, Carers Trust
Sally Light, Chief Executive, MND Association
Danny Sriskandarajah, Chief Executive, Oxfam GB
Mark Winstanley, Chief Executive, Rethink Mental Illness
Jacqui Cannon, Chief Executive, The Lewy Body Society
Each year, carers week has a theme to highlight the importance of unpaid carers and the challenges they go through. This year is no different and the theme for this year is “Making caring visible, valued and supported”. So why such a theme this year?
Personally it is well known that carers can end up being hidden because they are caring behind closed doors, but there are other reasons for carers to be hidden. Not many people think they are caring and just get on with it, some feel that caring carries stigma and to make matters difficult, health and social care systems often fail to identify carers. It is known that even if a carer is identified then there is always a risk that the carer can slip through the net. The reason for this is caring heavily relies on the relationship to the “cared for”, especially caring for mental illness. If that relationship fails then caring can be at risk and the carer could be at risk.
What about being valued? Is caring valued in society? Is caring valued in the community? To be really blunt about it, I am afraid caring suffers from being valued. Society does not deem the sacrifices others have to pay to care a worthwhile endeavour. It could be that people are compelled to care and that in itself could be the reward, but that reward is countered by the harsh challenges carers have to face, especially financial. Unpaid carers put so much on the line that they themselves risk their own health and wellbeing. It is so important we not only value carers but the importance of caring itself.
What about being supported as a carer? Many carers complain health and social care systems fail to support them. The risk is if the support for the carer is lacking, then this can cause a trickle down effect to the patient or “cared for”. The risk is the patient suffers at the end of the day because the carer is not getting that vital support.
I call for ALL carers to use this week as an opportunity to stand up and be counted, be diplomatic in your efforts, but make yourself known and be proud you have been there all this time to give a care. We are not asking much, just only to be identified, valued and supported.
Just to note, I will be doing a Share & Learn session at Carers UK. I wish to share my knowledge of the experience of care regarding ethnicity, mental health and carer wellbeing using my poetry. If you are a carer, see the link below to book
Welcome back to a summary of chapter 3 of my book “Experiencing mental health caregiving”
This blog focuses on my 2nd book – Experiencing mental health caregiving. The book helps raise awareness of unpaid carers providing care to someone close suffering mental illness. The book highlights the experiences of providing unpaid caring.
For Chapter 3 – “Carer befriending and peer support” I asked carers several questions, but this video will look at the first question that being “What does carer peer support mean to you?
The reason I asked such a question was down to how can carers relate to others when caring can be a private and personal experience. Do carers know they can get support from others to reduce stigma and increase carer knowledge?
Just like the videos I have done on my 2nd book, I will sum up a few responses from those regarding “Carer Befriending and peer support”.
To check out the video summary see link below
So going back to my book, chapter 3 got responses regarding carer peer support, you can see the responses below.
One carer Jacqui Darlington responded
“A carer peer is someone who can offer emotional and practical support to another carer by using their own lived experiences which may enable them to overcome barriers, challenges and fears to achieve whatever it is they may need. They may also be known as Experts by Experience .”
I not only asked knowledgeable carers, but also engaged with mental health trusts.
Nottinghamshire Healthcare NHS Foundation Trust rep responded
“We train people up as peer support workers or carer peer support workers. We are now employing them in the jobs at the NHS trust. I think as a carer peer support worker, the difference between that and pure peer support worker is that the carer peer has lived experience in caring. .”
One last point – Another carer responded
“To me, carer peer means supporting a carer who may be struggling with the sometimes overwhelming difficulties experienced when caring for a loved one with mental health issues. Being there for that carer, sharing personal experiences and showing an understanding of what they are going through”
I asked 8 other questions for Chapter 3,
Have you experienced carer befriending and what did it feel like?
Where should carer peer support be located?
Do you think there is enough education on carer peer support?
Would you befriend other carers?
Is there a line or boundary to carer peer support?
Is there a difference between carer peer support and service user peers?
Why is carer peer support lagging behind?
The responses I will cover in a later video, but to sum up What does carer peer support mean to you?
I noticed that lived experience was critical to becoming a peer carer. To share your understanding and knowledge of the caring role and help those new to caring is vital in forming a connection.
if you are interested about mental health carers, you can buy my book on the link below
The Health and Care Act: six key questions – The Kings Fund answers 6 key questions on the Health and Care act, which should be vital reading for unpaid carers and those who engage with them.
Welcome to a brief update of my february ethnic mental health carer forum. As usual the forum is an engagement platform for those caring for someone suffering mental illness from an ethnic background. I run the forum via zoom with the support of several mental health trusts.
Speakers at my carer forum for February were
Lisa Fannon the Public Health Training and Development Manager for Lewisham updating on Health inequalities
Ellie Wharton Senior Project Manager for Health Innovation Network
Engagement from the Police on mental health
Lisa Fannon presents on health inequalities project
Lisa wanted to update us on the health inequalities project. Since last month there was a discussion with KINARA who attended and talked about the work that they are undertaking in the community, specifically around the Birmingham and Lewisham health inequalities review that is being undertaken with the African and Caribbean communities.
That work has now been concluded and she has received a report. Lisa hopes that they will be able to launch all of that information with an event that’s taking place soon. Lisa reminded that some of us may have received the invite to that event already, but she wanted to ensure that as a community group that we were aware what is happening.
The event will be overseen and organised by Public Health Lewisham. They will also plan to have a additional event following the one just mentioned and it will specifically be for community members. This will be essentially a second in series of events around health inequalities where they are aiming to bring together community groups, and members of the health and social care and health and social care leaders talk about health inequalities. Lisa wants this to be done in partnership with the health and well-being to address health inequalities in Lewisham, and bring together everybody to discuss the situation.
There of course will be opportunities to look at some of the achievements of this work, but also to discuss further action on what needs to be done to tackle health inequalities. Lisa mentioned they will look at what kind of plans that they are hoping to undertake across this year and what future needs is happening at the event.
The event will run in the evening at a Community Centre, where she has sent in advance of this meeting, information about the event to Matthew.
Ellie Wharton presents on the Health Innovation Network
Ellie wanted to tell us about the mental health patient safety network event, which is part of their mental health safety improvement programme. Ellie apologised for the acronyms flying around on the programme, but thanked us for inviting her to join and speak at our ethnic carer group.
Ellie agreed with some members that health inequalities is such an important topic, which is why they have chosen it for their second event to focus for the safety network. Ellie talked about what the Health Innovation Network is, which is an Academic Health Science Network (AHSN) for south London, one of 15 AHSNs across England.
The AHSN exist to speed up the best in health and care. They have been commissioned by NHS England and Improvement to focus on Mental Health Safety. Which involves developing a Safety network and supporting quality improvement work in certain areas (such as restrictive practice).
Their principles are central to how the programme runs: • co-design with people with lived experience • Creating shared learning, connection and Joy • Foundations of systematic QI • Engaging with inequalities where they exist • Working with their foundations and all the good things that already exist
Ellie then pointed out a member of my ethnic carer forum and stated one of the members was involved in the event. This is when the carer member spoke on her section regarding health inequalities and carers.
Ellie then talked about the mental health safety network.
The network is an interactive designed to bring together individuals across the system with the shared goal of improving mental health safety it is co-hosted by the HIN and the 3 south London Mental Health Trusts (South London & Maudsley NHS Trust, Oxleas NHS Trust and South West London & St George NHS Trust). It’s purpose is to create value through sharing learning, creating connections and building energy and capability in safety improvement
The event welcomes people who share the MH safety network’s goals of improving mental health safety. Registration is open to people with lived experience of mental health services, including carers, clinical and managerial staff from NHS, independent and private health and social care providers, commissioning leads, local authorities, voluntary sector partners, police, emergency services and other system partners.
Ellie then talked to us about the agenda of the event.
Mental health Police engagement from South London
The forum gets engagement from the police every now and then. This is mostly because the police have an interest in mind while helping those in a crisis, they want to connect and reassure carers. The police talked about what sites they cover this being Sutton, Croydon and Bromley although its quite a small team.
Their main sort of role and objectives is being a direct liaison with the NHS and mental health trusts. There are other objectives dealing with assaults against NHS, racial assaults against NHS staff where the perpetrators is having mental health issue.
The police then talked about section 136 and how they have been dealing with a lot of escalations. The police think the section is being overused. They think there’s things that they can do as a team to prevent that. There was also some talk about what they can do to help with people out in the streets dealing directly with mental health issues.
The police try and get out and about to the hospitals as well. They have got a police liaison officer that works at the hospital and who deals with crime at other Hospitals.
In a nutshell the police work directly with mental health patients once they were coming into contact with police.
A Caring Mind 