Welcome back to a quick update of my carer groups and forums. I have resorted to doing a brief update due my current projects raising carer awareness. As of this moment, I am writting fiction carer stories. You can check out my YouTube channel to view those stories. I have around 13 more stories focusing on caring for someone with mental illness, I will then work on stories focusing on caring for someone with cancer and follow that up with a book.
Until then, here are my updates below.
Lewisham Mental Health carer forum
For my Lewisham MH carers forum we had engagement from Mina Hadi who have lived experience of mental health. She is the service user representative for the Patient Carer Race Equality Framework over at East London NHS Foundation Trust.
Mina would have attended my ethnic carer forum, but there was a clash, so we agreed she can present at my Lewisham carer forum. I often say to members of my carer group to network. This is vitally important if carer members are involved in a community project. This is why I try to link up with other groups involved in increasing equity for ethnic minorities using mental health services.
Mina talked about the importance of PCREF and how East London NHS FT is working towards reaching out to marginalised groups. These being diverse ethnic groups, refugees, asylum seekers, the homeless and the LGBTQ community. All are vulnerable to mental illness due to discrimination, stigma and lack of support. Mina talked about what needs to be done and work in progress.
The next speaker was Dr Georgina Charlesworth from University College London.
She is the Associate Professor in Research Department of Clinical, Educational and Health Psychology.
Her main focus is on dementia where she has wrote a number of papers. Some are shown below
- Living alone and risk of dementia: A systematic review and meta-analysis
- Befriending carers of people with dementia: randomised controlled trial
- Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial.
- Examining the Lancet Commission risk factors for dementia using Mendelian randomisation
Dr Georgina was joined by another researcher linked to North East London NHS Foundation Trust. Dr Georgina spoke heavily on the importance of dementia carers. She was impressed that such a carer forum existed and felt that we as a group set an example. Dr Georgina spoke about the problems of stigma and she talked about one of her projects, which was the Carer Supporter Programme within Prof Martin Orrell’s NIHR-funded programme entitled “Support at Home: Interventions to Enhance Life in Dementia”.
The new Alzheimer’s Society service manager for South East London was also due to join us, but were unavailable and I am hoping they will be free next time.
Ethnic mental Health carer forum
This is a forum not bound to a specific area. There should be places for minority ethnic carers to attend, so I often advertise the group to other NHS mental health trusts. The main group members are usually from South London.
The first speaker for this carer group was Abigail Babatunde from Kings College London. She spoke on updates for the project advanced directives black people.
The Advance Statements Project is a research project on getting advance statements – also known as advance choice documents or advance directives – to work for Black African and Caribbean service users who have previously been detained under the Mental Health Act, their carers, and mental health staff.
The goal of the research is to:
- Help reduce detention under the Mental Health Act for Black service users,
Support, hear and understand Black service users and their carers/supporters,
- Know and further understand the issues surrounding using advance choice documents and why staff members may not follow them,
- Reduce coercive care in mental health care, and to better the relationships between Black service users, their carers/supporters and staff/professionals.
There is a follow up event at the Ortus (Maudsley NHS) below.
The next speaker was Denise Mantell from Bromley council. Bromley Council is currently developing its Carers Strategy and would like to hear from as many carers as possible. Since Oxleas mental health services covers Bromley, it was a chance carers could get to be involved. It would help if the carers strategy involve those caring for someone with mental illness.
Talking about Oxleas NHS Foundation trust, we were joined by Japleen Kaur and Marie-france mutti. They spoke about the new Funding scheme – Improving patient and carer experience grants.
If those within Oxleas have an idea that will improve patient or carer experience, they can bid for funding (up to £750) from our charitable funds. The project ideas need to be developed jointly between members of staff and people who use Oxleas services or care for people who use Oxleas services.
- Application form completed and sent to our Involved Network
- Applicant informed of bid outcome
- Transfer of funding arranged
- Activity takes place
- Bidder shares photos/feedback on how funds have been used.
• The grant should be spent on enhancing the experience of people using our services and their families
• It should be used for activities/items that are not funded by trust services.
• It should benefit at least three service users.
• All bids need to developed joined with people using our services and staff members.
The first application period for the Improve Fund is open now until 31 May 2023.
If you have a query about the fund, please email: firstname.lastname@example.org.
Joint Southwark and Lambeth Mental Health Carers forum
Here are the update’s for my other carer forum I run in the afternoon for the last friday of the month. I used to run these forums seperately, but due to covering a lot. I have decided to merge them.
We were delighted to be joined by another speaker from University College London. This was Dr Rebecca Lacey who talked about her study on Young Adult carers in the UK.
This was following off from Carers Trust “Young Carers Action Day”, but unfortunately it was too late for Dr Lacey to attend in March.
Staff from Lambeth Carers Hub attended to hear more on her research.
You can read Dr Lacey’s paper on the link below.
The next speaker was Sarah Allen who is the Head of Patient Experience at Guys & St Thomas NHS FT. The hospital trust is currently working on their Carers Strategy. I often to say to all carers that it is very important to engage with hospital service carers strategy.
It is not enough for a carers strategy to exist, but to be used to hold services to account as in “You Say We did” focus.
GSTT want to involve families and carers in all aspects of their services.
They aim to recognise, value, include and respect carers. Plus treat them as expert partners at the heart of decision making for the person they care for.
I also presented the new NHS England hospital discharge toolkit to the group, there was a bit of confusion as some felt the toolkit was for triangle of care.
In the end I pointed that this was for acute hospital services in London.
I am also pushing to engage with GSTT Cancer and Surgery Clinical Group to raise the profile of cancer carers. Once I have built a group of cancer carers, I am hoping for engagement for that hospital trust especially regarding the cancer group. I am also getting support from Kings NHS and eventually will expand to other hospital trusts.
South West London MH carers group
This group is a hybrid as there is a carer-led peer focus for the first part of the group. The next part is finding out about services and how they are supporting carers.
The group is strictly carer-led and co-facilitated by SW London carer Ava. She does the peer group section, while I will focus on speakers and engagement.
We had a great turnout as all 5 carer centre’s help promote the group, but we can out of time for the peer support section. The group seeks engagement from the local mental health trust South West London & St George, but this can be difficult, probably lack of staff maybe? Still we got engagement from Kingston Hospital who have a strong carer focus.
We where joined by Beth Mburu who is one of the Clinical Liaison Practitioners. Kingston Hospital is working on their carers focus and Beth talked about the following
- Hosp. Discharge Planning Toolkit (aimed at staff)
- Carers’ Needs Assessment Template (augmenting and embedding the Carers’ Agreement)
- Carers’ Passport
- Triangle of Care – hospital self-assessment tool and lessons learned/embedded
- Resource for first time Carers / people who give their time to support a vulnerable person
- National resources -already in existence from Carers’ UK – communicate and disseminate to the right people
- Live/real-time digital tool aimed at Carers’ drawing together local provision and resources
- Safe Transitions of Care – checklist for front-line staff
- Hospital checklist / advice and Information
Kingston hospital NHS FT also had a carers event on the 4th of May to engage with carers and let them know about the work they are doing to support carers.
Again I am also focusing on engagement from the hospital’s cancer services to prepare for my cancer carer group. It is important to know who does what and how they focus on cancer carers.