King’s College Hospital NHS Mental Health Fair 2023

Welcome back to another carer and mental health blog post for November. This blog focuses on Kings College hospital event for Tuesday 14th of November. The event was called “King’s Mental Health Fair”.

King’s College Hospital is a major teaching hospital and major trauma centre in Denmark Hill, Camberwell in the London Borough of Lambeth. Kings provide local hospital services for people living in the boroughs of Lambeth, Southwark, Lewisham, and Bromley.

However Kings college hospital feels not only physical health is important, but also mental health. Kings hospital also wants to work with community groups to help promote good health and mental wellbeing. So for 2023 it was the 2nd ever Mental Health Fair.

The mental health fair took place in the Boardroom which is in the Hambleden Wing, which ran from 11 am till 2 pm and hosted by Kieran Quirke who is the Associate Director of Nursing for Mental Health at Kings. The fair was open to all patients, staff and carers, which staff from Kings hospital attending and also staff from NHS maudsley dropping by.

There were some excellent stalls from organisations taking part. I visited a stall from the SHARP gallery where they mentioned exhibitions and workshops.

Age UK Lambeth had some very interesting handouts. Age UK Lambeth is an independent local charity working in Lambeth to offer support and services to older people.

I also checked a few things from the Kooth stall, which provides an anonymous site which helps children and young people to feel safe and confident in exploring their concerns and seeking professional support.

Then I spoke to Nathan who running the Lewisham, Greenwich and Southwark Samaritans stall. Samaritans is a registered charity aimed at providing emotional support to anyone in emotional distress, struggling to cope or at risk of suicide

The next stall I visited was from Southwark Healthwatch. Healthwatch Southwark are the independent champion for the patient and public voice. They bring people together to influence health and social care services in Southwark to make them better. Everything they say and do is informed by their engagement with local people. Their aim is to address inequalities in health and social care and ensure local services are appropriate for Southwark’s diverse communities.

I then spoke to familiar faces at Lambeth Carers Hub. The carers hub seek to limit the challenges that carers face. They achieve this through four core workstreams: raising awareness of carers, influencing local policy through community engagement activities, improving carer wellbeing and connecting carers to each other and to support and training opportunities through their services.

I was also privileged to be part of the mental health fair as I promoted information on unpaid carers these being info on Carers UK, plus I gave away some of the books I wrote on carer awareness for those caring for someone with a mental illness and promoted my group for the Southwark & Lambeth MH carers forum.

Other important stalls were on the Mind and Body programme where they are committed to join up and deliver excellent mental and physical healthcare, research and education so that they treat the whole person.

There were many other organisations and stalls, but overall I felt the event was great partnership working with the community as we all work together with the hospital to increase awareness, health and wellbeing for all.

Why hospitals need to increase focus on unpaid carers

Here is my first carer blog post for November. Come to think of it, November is an exciting month because it is not long until Carers Rights Day which takes place on the 23rd of November. It is important unpaid carers know their rights, but that is a blog post for another day. What I want to highlight in this post is something I have been doing for the past year. That is having a location in some hospitals to engage with carers wandering around the area.

Why do I feel it is so important to engage with carers at hospitals? I mean I can always link up with carers at support groups or carer centres. Well from lived experience, I know full well that hospital experience for carers can be a daunting experience. With health care as it stands, the focus is often on the patient. It is how we understand that the patient is in need, especially if their health is in crisis. The patient becomes the service user and thus they are the core focus of hospital services.

The carer or family member might possibly be in the background. Patiently waiting for their loved ones recovery, they want to follow that person through the hospital experience. Yet, there are probalems and challenges. Very few health professionals often engage with the carer, they might fail to identify them, not keep the family, friend or carer updated. Worst of all there might be scenarios where the carer is completely ignored even if the carer is pointing out options for better recovery or warning against something. There could be lack of carer advocacy, lack of carer referrial, lack of carer peer support especially when a loved one is nearing end of life.

Some people do not even know they are caring, they just arrive in hospital and listen to every advice the health professional provides. People experiencing the role of providing unpaid care might just end up coping in their role.

If carers go through all of the above and believe me a lot of carers experience this when they wander the wards of hospitals. Then it is not hard to understand that carers can feel under valued. Carers will feel they are not listened to if policies and plans are not in place to hear carers out. If carers feel they are not heard, then they will not want to engage with professionals. It is not like we want to force people to take the label of carers, but if they are not identified then how can the hospital system provide carers with the support they need.

With changes in the Health and Care Act, it is vital that hospitals work hard to engage with families and carers. Many carers taking their loved ones to hospital still go unidentified as hospital record systems are too slow to record carers. There has been great strides in the NHS to use the power of co-production to develop a carer’s discharge toolkit. Many NHS hospital trusts have taken the challenge to improve the experience of carers at hospitals. This provides a pathway to understanding carer needs and compiling data to find out the root causes of carer distress.

For far too long carers feel they are not understood or are not provided any service even though carers ARE actually using hospital services. Just because carers do not have a hospital bed, does not mean they are not vital in continuing care especially when the patient is discharged. The NHS faces immense challenges and will rely on the caring community as never before.

With the new carers hospital discharge toolkit, there is an excellent foundation to build upon to make carers included in the hospital experience. The NHS owes this to carers and we need to include, support and value the experience unpaid carers bring.

London cancer caregiver forum – October update

Welcome fellow carers. Here is the brief October update from my London cancer carer forum. The forum is aimed at those caring for someone with cancer, we welcome to hear experiences, connect and grow the network. The forum runs every last wednesday evening of the month.

Caring for someone should be identified and recognised, especially if you need support. Caring is part of the community and carers themselves should be part of that community.

So for our October meeting we were delighted to be joined by Anton Morgan-Thorne who is Macmillan Engagement Manager for London, Southeast and East of England.

Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care.

Macmillan are developing a new strategy on engaging with the community. It is important that those caring for someone with cancer also have a say and be part of that community.

Andy talked about what Macmillan can offer those affected by cancer and how this can help cancer carers. Macmillan talked about welfare rights advisor, macmillan information centres and support that can help carers such as Holistic Needs Assessment of their loved one.

So it was great to also hear from Rachel Waddon who is Macmillan’s new communities’ manager. Rachel talked about the Macmillan London Cancer community. The LCC has been around for some years, but has not had anyone to support the community until now. Rachel is doing a survey with the London Cancer community members to get an understanding of what the members of the network would like from it so that they will co-designing it together. Rachel wants to develop a really strong foundation for the London Cancer Community to grow.

If you want to help build a strong London Cancer community please access the link to join the network – London Cancer Community (smartsurvey.co.uk)

Below is the link to read the most recent newsletter – https://sway.office.com/sxyM6iF0ddG5S3vc?ref=Link

Our group will look to be part of this community to help provide a platform for carers to be heard and involved. This include feeding into policy, telling stories and helping to build a stronger foundation for carers to be included.

If you are caring for someone with cancer, feel free to check out Macmillan’s online carer forum.

https://community.macmillan.org.uk/cancer_experiences/carers-only-forum

Carers and hospital discharge toolkit – St George’s University Hospital

Here is another blog post from carer activist Matthew McKenzie. I recently just came from a steering group event from St George’s University. This took place on the 30th of October. The groups focus was on how the hospital trust can work towards identifying and supporting unpaid carers.

It might seem such a silly question, but I am sure someone out there is asking why should hospitals work towards identifying unpaid carers?

There simple question is unpaid carers are struggling. They struggle with caring for someone and will expect to struggle when their loved one is discharged from hospital. If the carer is not identified then all to often the carer will have a bad experience of hospital services, which will probably impact on the cared for.

This has to change and fortunately there is a new strategy to improve carers discharge using a toolkit called the “Carers and Hospital Discharge toolkit“

This initiative is from NHS England which was co-produced with carers and patients in mind.

Every so often I pay some attention to acute hospital trusts. I even have a carers stall at St George’s University hospital, just as I do at some other hospitals. I was delighted to be invited to the steering group to see how things are progressing with the hospital trust.

Implementing a carer initiative regarding patient discharge is no easy feat. St George’s university hospital is a massive trust with around 9000 staff. Part of the Epsom and St Helier group. St George’s serves a population of 1.3 million across southwest London possibily covering 8 London Boroughs.

So what were the updates from St Georges Carers Steering group?

Well with the group chaired by Wendy Doyle who is the NHS trust Head of Patient Experience.

There was the launch for Carers Week in June 2023, the NHS acute trust has done the following

Started to connect with colleagues and key collaborations including healthwatches, NHS staff and carer centres.
St Georges team have also Identified an Executive Sponsor
Plus they continue to raise awareness of the toolkit
They hosted the first steering group with the focus on when to run the group.
The group also looked to how they could implement the toolkit.
They looked at implementing toolkit as a QI project
The team also spent time with discharge team, Rise, Cerner leads, London care Record, and NHSE to explore date capture

What impressed me on what St Georges hospital trust were doing is tailoring their patient system “Cerner” with a method of recording carer information.

There also has been a lot of work on the new carer’s leaflet, which was co-design leaflet for staff to signposting to carers. Since I have a carers stall, the leaflets will be useful to help engage with carers.

There will be a lot of work to do, but I am impressed with how far the university hospital is making a difference for unpaid carers.

Happy 35th anniversary Cygnet – The journey continues

It has been an incredible time since I have become involved as one of the carer network ambassodor to cygnet. Since the triangle of care was launched many years ago, several organisations have taken up the chance to reach and engage with families and carers. I have watched closely the work NHS organisations have done to make a difference and improve people’s lives.

One thing I have noted is that most organisations work very hard to implement a practice of identifying carers, but from what I have seen and been involved with at Cygnet, they have done so much to make the triangle of care a success. Ever since I have been involved at Cygnet, they have reworked many policies to be in line with the Triangle of care vision.

There have been several carer network events at many of Cygnet’s hospitals including Sites in Harrow, Bury Hospital, Maidstone Hospital, Cygnet Hospital over in Bierley, Churchhill on Lambeth site, Tauton and many more sites. From each carer network event I learn more from those who attend and I can see how Cygnet works so hard to improve people’s lives.

With the guidence and support of Laura Sheridan who is Cygnet’s lead for Triangle of care. She has brought together carers to promote the importance of networking in a peer environment. We all contributed to the development of Cygnet’s carers strategy. With the highest level of co-production there was also a development and successful launch of Cygnet’s Carers charter, amendments to Cygnets Social care Admission policy and involvement on the Carer, Family & Friend survey.

There have been numerous promotions and platforms to promote the networks voice as members helped in developing online courses via the Cygnet Masterclass carer course. I have also been given the chance to share my lived carer experience through filming.

The carer network has worked so hard to develop links to families and carers who use Cygnet services. We strive to make a difference in people’s lives and with the support of the network, carers can feel counted.

I wish Cygnet a happy 35th Anniversary and I look forward to joining Cygnet on it’s Journey into improving lives.

Mental healthcare and coercive practices

Another blog post from carer activist Matthew McKenzie. New research over from Kings are looking for service users, carers and inpatient mental health staff members with experience of coercive practices such as restraint in inpatient mental health settings.

If you are interested to give your views, please contact

Lewys Beames
PhD Student
Department of Psychology
Institute of Psychiatry, Psychology & Neuroscience
King’s College London
Email: lewys.beames@kcl.ac.uk

Southwark Black History Month 2023

Continuing on the Black History Month focus. I have added another post due to receiving my poem being read wonderfully by carer Annette Davis.

Recently there was a Black History Month event held over at South London & Maudsley NHS Foundation Trust. I was due to attend, but had other commitments. It was a shame, since I attended the previous Black History month event at SLaM NHS. The event included food, music, stalls and poetry.

Annette Davis a carer who I have known a very long time is the Chair of the PCREF Service Users and Carers Group at our local mental health trust.

She is very dedicated to her role and champions working together with health services. Annette has her own ethnic carer group over in Southwark and at times we do collaborate. I was astounded by Annette’s performance of my poem and had to a video of her reading my Black History month poem shown below.

Our History to Celebrate – Poem by Matthew McKenzie read by Annette Davis.

Experiences of caring for a black person with disabilities

Welcome carers. Another new research project for unpaid carers to get involved and feedback their lived experience. This research is from Emily Oputa who is doing her Postgraduate Research in Psychology. She is studying at the University of Surrey.

Emily would like to interview carers and hear about their experience of caring for a Black person with a lifelong disability including ageing.

If you want to give your views please contact Emily Oputa at eo00455@surrey.ac.uk

See poster below for details.

Exploring the experiences of carers from Black communities

Welcome fellow carers. As of writing this blog post, it is still the start of Black History month 2023. There are many exciting events taking place. I will try my best to help promote ethnic carer events.

Luckily we have an event aimed at unpaid carers from Black communities. We have to explore and acknowledge that not all carers experiences are the same. Just like I often say not all carer journeys are the same.

As part of Black History Month, Dr Juliana Onwumere from the Institute of Psychiatry, Psychology & Neuroscience at King’s and South London and Maudsley NHS Foundation Trust will facilitate an online panel discussion focussing on the experiences, wellbeing and unmet needs of carers from Black communities in the UK, including young carers.

This event is open to anyone including members of Black communities across the UK.

Panel members:

Tim Banks, Research & Engagement Manager, Carers Trust
Peter Alleyne, Director of Equity, Inclusion and Involvement, Rethink Mental Illness
Angela Anwah, Founder & Director: Mental Health and the Arts
Michael Shann, Head of Carer Support, Carers UK

Black History Month 2023 – Crawley Musuem

As of this blog post from Matthew McKenzie, it is Black History Month 2023. Previously I had written my thoughts about what Black History month means to me. Black history is what defines me and what makes me work so hard to promote wellbeing and promote community. I want people to connect and I value community. I have seen what happens when distrust, discrimination, stigma and blame hits community groups.

Still, sitting around writing about things is not enough. You have to get out there and support the community. You have help promote the values of what brings us together and share ideals. So for this blog, I was delighted to help support Black History Month over in West Sussex. Crawley Musuem held an Exhibition of Black history month with community group “DIVERSE Crawley”.

As a reminder, Black History month has been celebrated in the UK since 1987. The celebration presents an opportunity for everyone to reflect on the past and think about how to improve things for the future. The month-long spotlight allows discussions to go past those of racism and slavery and look more to black leaders, many of who’s legacies touch daily lives.

I was there supporting Carers Support West Sussex who do so much for unpaid carers. With approximately 30,000 registered carers supported by Carers West Sussex. Their charity runs Support Groups and a Carer Response Line. They also assist carers in accessing necessary equipment and funding for their well-being. Additionally, Carers Support West Sussex offers counselling, call back services, and well-being support, with teams stationed in major hospitals. As soon as I arrived Adeelah Khan who is the Carer Engagement Co-ordinator greeted me. I also met their mental health carer engagement to Sussex Partnership NHS Foundation.

The Black History month event opened with African drumming session while the host Marilyn Le Feuvre who is the DIVERSE Crawley Co-Founder and Chair, made sure attendees where welcomed and looked after.

African Druming Session to Start Black History Month Exhibition

It was not long before crowds formed and the Lord Lieutenant of West Sussex Lady Emma Barnard arrived. She was also joined by High Sheriff of West Sussex – Andy Bliss and Crawley Mayor – Cllr Jilly Hart. We were then taken up to the exhibition on the first floor where we heard speeches from each of the attendees.

Their speeches struck an accord with me, I am not sure what Crawly does, but their community seems very close and connected. They all spoke about what Black History means to them and the importance of such an exhibition and event.

After the speeches it was not long before Lady Emma Barnard cut the ribbon to Launch the exibition

We were then given a tour of each exhibit including the impact black people have made to the NHS. The importance of Windrush and the struggles black people faced on arrival. We also heard about the positive things about Black History on what bring people together and sharing culture.

I was honoured to see my poem as part of the exhibition at the musuem and I even actually read the poem for the audience.

This was again thanks to Carers Support West Sussex who spoke about what they do for the community and how they feel unpaid carers are part of the community.

We learnt of African fashion and got to hear various African songs from the young and old. I took the time to place the audio below.

Ugandan National Anthem

Next we heard another poem about the impact of Windrush, which was wonderfully read out by Irma Stuart-Tei who is co-founder and Deputy Chair of DIVERSE Crawley.

Then we were given more details about black history including the case of Kris Karba, Stephan Lawrence and the importance of Black Lives Matter. The talk was supported by Crawley campaign against racism who spoke how together we can all contribute to tackling racism and discrimination.

There were talks about why Black women are three to four times more likely to die from pregnancy-related. The importance of diverse barbie dolls. There was so much presented, that I could not possibly cover them all. There were futher presentations downstairs followed by African and Carribean food.

All in all, I felt this day was the highlight of several weeks as I have been occupied by so many things. I was impressed on how much work and effort placed into the event. Again, I am not sure how Crawley community does it. They work together tirelessly to promote what community is all about. Please check out my video compliation of the event.

Looking forward to more things from Carers Support West Sussex and some other carer centres around the country. I also left my book with the carers centre regarding “Race, Caring and Mental Health”. The book promotes ideals of NHS England – Patient Carer Race Equality Framework.

A Caring Mind

A blog for carers of mental health and cancer