Monthly Archives: November 2022

SLaM Family and carer listening event 2022

Hello Fellow carers. A quick blog from me on the latest South London & Maudsley (SL&M) NHS Foundation trust’s recent families and carers listening event. Usually mental health NHS organisations run special events to bring together those who care and support someone with mental illness, especially those using the trust services. I have been to a few NHS organisation carer events, but was delighted to see SLaM were to host one close to carer’s rights day.

It has been around 3 years since the Maudsley hosted a listening event for unpaid mental health carers. I remember the last carer event held over at Southwark community coin street where we had some excellent speakers and the staff were very welcoming.

All of the past family and carer listening event focused on carers getting a chance to be updated and also to be heard. The 2022 event I felt was very different and gave a chance for carers to update each other, especially those who were very involved shaping maudsley trust services.

The family and carer listening event 2022 was held over at the Ortus, which is SL&M’s own venue for hosting small or large conferences, meetings, training courses. I have not been over to the Ortus for some years due to the Covid-19 pandemic, which also explains why SLaM has not hosted the carer conference for some time.

The carer event was chaired by Gabrielle Richards MBE who is the trust Head of Inclusion, Recovery, Professional Head of Occupational Therapy and AHPs. So yes, Gabrielle does an awful lot. Her role is also inclusion of carers and patients at the trust. Going back to the event, I arrived on a wet rainy thursday morning, since the event started around 9:30 am. It was not easy getting to the Ortus due to the maze of construction developing of the exciting new build, but maudsley staff were very friendly and helpful in directing me to the site.

The Ortus was very warm and comforting, I was handed SLaM’s latest launch of their Planning for the future bookley, carer’s strategy and emergency planning booklet.

I noticed with all the booklets there was a heavy carer influence especially from those who attend the NHS trust’s carers committee.

As I arrived, I was greated by staff and carers from each of the boroughs SL&M covers, which are Croydon, Lewisham, Southwark and Lambeth. We were served early refreshments as I caught up with those who I have not seen for a while. I noticed also carer governors doing their bit to engage and chat with other carers while also networking. Everyone was looking forward to the event.

The event was held in the large conference room downstairs with Gabrielle and Flora Ezenwoye, Chair of the Family and Carers committee welcoming the audience to the event. We then got a presentation from Alice Casey who is the Director of Programmes of the Maudsley Charity.

Next was a listening exercise as the hosts asked carers what they would like to hear more about at the carer conference. Next we got to hear a carer’s story from Faith Smith who spoke about her involvement at the mental health foundation trust. A lot of new carers have not heard of involvement in shaping/influence services, especially services aimed at carers, so I noticed they paid a lot of attention.

One of my forum group members was unable to attend, but we got to see a video of Brenda who spoke about the importance of planning for the future. Brenda feels carers including herself must be supported to plan for the future as there is also a worry how a carer will cope when they are unable to care in later life. This helped explain the launch of one of the booklets.

We then got to hear from chair of the NHS trust Sir Norman Lamb who spoke about the NHS trust direction for carers, he also was proud what the trust has done with Triangle of care (inclusion policies aimed at supporting carers), but he admitted there are still many things to work on and nothing was perfect. I felt it very important those who help lead the trust make their presence known at events and also get a chance to listen to carers themselves.

This was when I got to do my presentation, which Sir Norman stayed to watch. All of my own projects tend to focus on networking and sharing ideas. So I presented on the importance of carer networking, events bringing people together and also holding to account. I spent most of the time asking carers to share ideas of what they felt was a good example of carer networking.

I also finished off with a carer networking poem from my latest poetry book “The Poetry book of mental health caring”, which you can purchase off Amazon. The poem taken from the book was called “The carer network”

Next we got to hear updates and service information from Chris McCree who is the Parental Mental Health Lead of the Helping Families Team and Perinatal Community Services. We also heard from Nick Hunter who is the Peer Trainer of the Fathers group. After the talk, we then had launch and got a chance to catch up with other carers we have not seen for a while, an exciting development was carers from the Croydon area started a new connection group, which I am now hosting, Usually I connect in Lewisham, Southwark and Lambeth and every so often I will go over to Greenwich or connect with my SW london group or West London carer groups, but I have not paid much attention to Croydon much.

I have now agreed to form more of a connection carers from that borough, especially since my SW London group gets some engagement from the SW London Integrated Care System and they cover 6 boroughs including Croydon. There is also exciting news regarding those boroughs, but I am keeping my mouth shut for now. In the end, it does not mean I am running a Croydon group, but it does mean we connect more online and it helps that carer governors are present in the group.

I also caught up with friends and carers from Southwark as I spoke to Toni King and Lorraine James who are from the Southwark Council mental health team. I mentioned to them I run a carer’s stall at several accute hospitals and would be glad to promote their service to carers at Kings College Hospital. I also chatted to carers who attend the Lambeth MH carers peer group and spoke to carers regarding the Patient Carer Race Equality Framework. So you can get an idea of what I mean about carer networking.

After a lovely lunch, we got to do another listening exercise to give feedback. Plus we got to hear from Margaret Whipp who talked about her experience as a carer and the importance of connecting on social media.

I often mention to carers that it is so important to get online and make your presence known. Online campaigning, connecting and networking works wonders for those who are isolated and caring for someone vulnerable. Due to the technological innovations pushed from the pandemic, the time to get online has never been more important. There was more exciting presentations and exercises being chair Yoga, Implementation studies helping to reduce racial Disparities, Triangle of Care Updates and also more carer stories.

There were also excellent presentations from Annette Davis who is the chair of PCREF service user and carer group at SLaM, plus she is also involved in the triple leadership for Southwark and also the facilitator of Southwark BAME peer group. Annette presented on LAMB training, which focuses on looking after yourself and carer wellbeing, plus another carer Carole Haynes did a talk on her experiences.

Overall I felt the latest family and carer conference was the best carer event yet from SLaM. I have been attending them for years. I think this one was the 5th or 6th carer listening event from SLaM that I have attended, so I think I know the terrain a bit. The reason this recent event turned out well was the format. The event was very well planned, although some things made the event run a bit late, I noticed the host state we should not worry or panic over such things, which I felt injected a form of mental wellness into the audience. These are things I look for as mental health professionals should practice what they preach. The event was very inclusive so we did not hear endless updates, but the audience got a chance to talk and be listened to.

Luckily there was no shouting and screaming about poor services as I got the feeling there was a form of empowerment and learning, there was of course talks about carer activism, but that is part of the empowerment principal. I also enjoyed the free food and nothing upset my stomach. Staff were very supportive and glad to see me and special thanks to Cath Collins who thanked me for my presentation. It was a shame I could not stay as I had to prepare for the Health Service Journal awards for 2022 (more on that later).

Still there was a lot of talk in my whatsapp groups about the event, specially from my Lewisham group and also the new Croydon group, even now as I blog there are good things being said about the event. I hope SLaM continue the work they should be proud of with the carer conferences. I will finish off with a poem I got a chance to read out at the event.

All my time I have been on my own
Then I heard it through another carer
It seems if I can get that carer’s network
Then understanding my role would be clearer

It is hard to know that your lost in the system
The more you speak the less they listen
I sick and tired of battling alone
As a carer I dont want to stay hidden

Then I was introduced to the carers network
They all said the same and wanted to connect
I feel an inner light that shrines through
And now I feel I am getting that respect

Still its hard to feel part of that movement
Things change so fast it is hard to keep up
If we are not kept ahead of all the changes
Then it is easy to see the carers network breakup

We look around to see other representation
For paid carers, professionals and service users
But what about our own carers network
Don’t unpaid carers also have futures?

Still for the time I have I am not on my own
I tell another carer what I have found
They also join the carers network
Where understanding their role is so profound

The Unwanted role – Poem From The Poetry of mental health caring

Welcome fellow carer viewers. I thought to add another of my carer poems to my website.

This is poem number 24 – The Unwanted Role.

This poem is from my latest book “The Poetry of mental health caring”, which you can find on Amazon.

I want you to reflect on the poem with the following questions.

• Why do you think the son is worried about caring?

• Do you think the carer will abandon his father? State your reasons why.

• Why is it important that someone should not feel guilty if they cannot care anymore?

• Why do you think it is important someone should continue to provide unpaid care?

Check out the book in the link below.

SW London MH Carer Forum September 2022

Welcome to a very late update of one of my carer forums. These are updates of the groups I run whose members are those caring for someone with mental ill health. For my September SW London carers forum, we were joined by Professor Caroline Glendinning who is the Emerita Prof of Social Policy at the University of York.

  • Prof Caroline presents on Carers and personal budgets

Caroline thanks us for having the chance to engage with unpaid carers and a way to learn from them. She was interested in our personal experiences, especially from the experience of caring for someone with a mental illness. She was pleased to see there are carer led groups fighting to engage with services.

Professor Caroline spoke at length regarding how Personalisation and carer policies have developed separately. She mentioned what the choices are disabled people, being either direct Payments/Personal Budgets/Individual Budgets.

She then spoke a bit about Carer’s rights being the importance of having a carer’s Assessment, how Carers Allowance Support should work and also the need for carer respite.

Professor Caroline gave some examples regarding cash schemes, but also highlighted some problems. Comparisons were from the following.

Where schemes were designed to support carers (Germany / Austria)
Plus some plans aim to increase choice for service users (England/Nlds)

Professor Caroline then moved into what trigger her research into these areas. These were “How do local authorities recognise/balance the rights, needs and wishes of service users and carers?”.

She wanted to find out what roles should carers play in assessment /planning support? Carers at the group were interested if there was there any consultation or involvement that was flagged up by her research.

Professor Caroline surveyed many Local authorities by running.

Lead officer interviews
Focus groups with front-line practitioners
Interviews with service users and carers

The results from her research lead to several findings, which Professor Caroline explained at length to the forum.

  • Joint/holistic family assessments desirable – carers usually involved
  • In practice assessments focused on service users – little attention to carers’ needs, apart from ‘willing and able’
  • Carers offered separate assessments but low take up
  • Even where separate carer assessment done, little consistent practice in bringing 2 together
  • Service user budget reduced by carer support
  • No guidance on carers’ role in planning service user support
  • Carers often involved in managing service user personal budget
  • Carers’ organisations not involved in developing personal budget policies/practice
  • Poor coordination of subsequent reviews of service users’ and carers’ needs

Discussion time from the group

Professor Caroline wanted to find out our experiences in regards to her research paper. There was a lengthy discussion on the following.

What were members experiences?
Any feelings regarding Assessments
How did people feel about Planning support
When did Reviews take place?

Professor Caroline then spoke about the conclusions of her research

Carers not involved in developing personal budget policies/practice
Failure to assess carer needs:
Just asked ‘willing and able’
Too few separate carer assessments
Service user budgets routinely reduced because of carer help
Funds for carer breaks included in SU budgets

This was a brief update to my SW London mental health carers forum.

October Carer News Updates 2022

OCTOBER 2022 Carer and Mental Health news <- read more news items here

For the October edition on caring and mental health we have

Barnardo’s Poignant Ad Spotlights Bond Between Child Carers And Project Workers – News item nsight into the bond between child carers and Barnardo’s project workers.

One in three Alzheimer’s carers has persistent symptoms of depression – The impact of depression on Alzhemier carers.

All Volunteers – Introduction to Carers UK – Video by Carers UK on the charities focus and the latest carers UK campaigns.

During Black History Month, let’s push for better mental health – News opinion on why Black History Month can help promote better mental health for black people.

Trying to connect with BME dramatherapists and students– Joint university research connecting to BME students.

Think Family Conference 2022: Mental Health and Community Services gather to celebrate how we Think Family to deliver better care – CNWL – Latest family/carer conference from CNWL NHS foundation trust.

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