VR training for informal carers of those with psychosis

Welcome to another blog post by Matthew McKenzie promoting research from psychiatry and psychology.

There is new research taking place at the institute of Psychiatry, Psychology and Neuroscience. They are working on a new way of Virtual training for unpaid mental health carers.

People with lived experiences of mental health problems, such as psychosis, can have a range of experiences that might include worrying or unusual beliefs about other people, themselves and events. These experiences can sometimes influence their styles of communication with other people, including close friends and relatives. Families and friends (sometimes collectively described as carers) are an important source of support to people living with psychosis. This caring role can be challenging, especially when communication might feel confusing and difficult. As such, carers understandably often want their own help on how best to provide support particularly in terms of identifying helpful communication styles.

In the study the IOPPN will look at whether it is possible to use a new virtual reality (VR) training programme designed specifically for carers of people with lived experiences of psychosis. By carrying out a smaller study, the research will want to see if a larger study would work in the future. The training will aim to guide a carer’s development and use of helpful communication styles with their relative with psychosis.

For more details see poster below.

If interested please contact

Laurence Rogers (Trainee Clinical Psychologist; Laurence.p.rogers@kcl.ac.uk)
Department of Psychology, King’s College London
Institute of Psychiatry, Psychology and Neuroscience
De Crespigny Park
Denmark Hill
London SE5 8A

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

Carers UK – State of Caring Survey

Welcome to another carer blogpost by carer activist and chair of Carers Uk ethnic advisory group. I have been meaning to blog about the new State of Caring survey, but before I do. I want to give a little introduction to Carers UK. If you are new to the caring role as in caring for someone unpaid like a family member or friend, then Carers UK can help with advice and information.

Carers UK is a national membership charity for carers, Carers UK is both a supportive community and a movement for change. Still, with over 5 to 6 million carers in the UK, it is hard to know the challenges carers face. This is why Carers UK launches its “State of Caring” survey to hear what carers face.

I suspect I can hear groans and moans from carers thinking “Oh no! Not another survey!”. However hold for just a moment. The UK has been hit with a cost of living crisis, recovering from a pandemic it was not fully prepared for. This in turn has led to an impact on the most vulnerable where carers are isolated and services are struggling. Despite health and social care resources facing challenges, there have been new problems affecting carers, but without carers feeding back then it is difficult for Carers UK to lobby.

Some people tend to think they are not carers and that is fine. I know some out there feel they are just doing their duty caring for someone affected by long term illness. Some people provide care out of love and concern. These reasons are all important, but is it fair that people have to struggle when there is help out there? Especially being identified as a carer and having that extra useful carer awareness.

Providing unpaid care can be a most isolating and private affair, but should it be so private that no one knows when that carer of the person being cared for is suffering needlessly?

I ask carers especially those from minority groups to take just a few minutes to fill in the “State of Caring” Survey. The more information provided, the more carers do not have to cope alone. You might feel you will not get anything out of it, but letting those who make important decisions regarding the nation should be aware that carers need that extra support.

You can access the State of Caring survey in the link below

https://www.carersuk.org/policy-and-research/state-of-caring-survey/

Bringing the Lambeth community together for health and wellbeing.

Welcome back to another blog by carer activist Matthew McKenzie. I run many groups aimed at those caring for someone unpaid. They could be caring for someone suffering mental illness or caring for someone affected by cancer. One of the groups I run is the Joint Southwark & Lambeth mental health carers forum.

So I was delighted to attend a fun filled community event over in Lambeth.

The weather was perfect for the health event. The event focused on the Lambeth community and beyond. It was a way to bring the community together.

We all have something in common, just as we all have importance in health and wellbeing. So it was a fun afternoon where everyone could come together and learn what the borough of Lambeth if providing for the community.

The event was called “Thriving Vassall and Coldharbour Health Day”. It took place over at Wyck Gardens on the 21 July 2023 from 3pm to 7pm.

When I attended the wellbeing festival, the first thing I noticed was how everyone was enjoying themselves. There was no fussing or fighting, people were relaxing, enjoying the music, learning about health and eating the food provided.

I met up and chatted with Karen Hooper who is a carer and does so much to promote community links in Lambeth.

I then spoke to stall holders at Age UK Lambeth, Disability UK Lambeth, Kooth stall, SHARP Gallery and more.

The Wellbeing Festival provided fun for all the family. Workshops and activities to help attendees stay fit and healthy. It was great to see a focus on young people’s mental health from the Kooth stall.

We also had stalls from South London & Maudsley regarding mental wellbeing services.

Involvement and providing feedback on health services is so important. So it was great to see Lambeth Healthwatch giving advice and information at their stall.

I noticed there was Jewellery Making and Face painting for children attending as it is great for young people to get creative. There was also a bouncy castle.

There were other Stall holders including Lambeth Childhood, Active Lambeth, Primary Care Network engagement (especially from the social perscribers). We also had stall information from Moasaic Club House, Certitude, Loughborough Farm, Buzwakk Recording Studio, Big Kid Foundation, Repowering London and Lambeth Libraries.

We also had some great singing performances on the day.

With so much bringing the community together, I enjoyed my visit to the Health and Wellbeing day, everyone was friendly and many wanted to chat about their services to help the community.

A big thank you to the main organisers Anthea, at Thriving Vassall & Coldhabour (Fiveways), Surjit from Ecosystem Coldharbour and Kamika from Chips and to everyone who came to the event.

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.

Click to access allied-health-professions-strategy-for-england-ahps-deliver.pdf

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.

Empowering my carer experience to help in training

As you might already know from my previous blogs. I am now a carer ambassador for Cygnet group. Cygnet is a leading provider of mental health, autism and learning disability services. As a carer I often use my knowledge and experience to provide insight and training over the years.

Some professionals might frown as to why service users and carers might wish to help train staff, but the voice of lived experience should not be ignored. There are many reasons why professionals should include users of services in training staff.

We should note that carers also use services as they seek carer support groups, information about services and sometimes counselling.

  1. We use their services, although professionals are experts for a reason, they spend years training for their profession. They know far more about their field than I would acknowledge, but there is a big difference. Professionals provide a service and we use that service, if those services second guess what we require then this leaves room for errors. To make matters challenging, services do change from time to time and it is so important carers and service users feedback on their experiences.
  2. We all need to work together. In the time of ever deminishing resources, it is a waste of time that patient, professional and carer battle each other to be heard. In the long run, we all wish for health and wellbeing for all of us. Working together means learning from each other.
  3. Professionals can and will make mistakes, so include the voice of lived experience can show professionals are willing to learn from mistakes. These mistakes can come from second guessing what users might require, being pressured in their role or just not paying attention.

There are many more reasons why lived experience should be empowered to help train professionals. So when Cygnet group offered a chance to film my thoughts about carer experience, I jumped at the chance.

The film will be used as an online resource to all staff as I gave my views on the importance of unpaid carers, lived experience and carer advocacy.

I value an organisation that helps provide the voice of patient and care voices.

Those voices help shape how services can be provided and this should be the future of healthcare were we work as a team.

June Monthly Carer & Health News Updates 2023

Latest carer and mental health news for June by carer activist and author Matthew McKenzie

June 2023 Carer and Mental Health news <- read more news items here

For the May edition on unpaid caring and mental health we have

Carer Videos

Carers Week: Lambeth Young Carers

Carers Week – Lanakshire Carers

Carers Week 2023 Wrap Up and Thank You! – Solihull Carers

Latest Carer News

Thousands of deprived unpaid carers in south east London

UK Gov announces cross-government action to support carers

Rapid review into data on mental health inpatient settings: final report and recommendations

Why are Lasting Powers of Attorney important to unpaid carers?

Carer’s Leave – the new law explained

State of Caring conference 2023 – Carers UK

NHS Long Term Workforce Plan

Other news updates

Cancer – NHS England

Carers UK  good practice briefing for supporting Black, Asian and minority ethnic carers

Greater Manchester black patients 3 times as likely to be detained

Macmillan Cancer Support – Carers Week

Caring for someone with a terminal illness

Allied Health Professions Strategy for England Easy Read Version

Cancer Survivors Day – Guy’s Cancer Centre

Welcome to another blog by carer activist and author Matthew McKenzie. I raise awareness of mental health carers and those caring for someone affected by Cancer. With my focus on cancer awareness, I paid a visit to guy’s cancer centre. On Sunday 25th of June they put on a lovely event “Cancer Survivors Day – A celebration of Hope”.

There are currently 3 million people living with cancer in the UK. With such an event there is always hope to battle and survive cancer. The event focused not only on the importance of hope, but also to acknowledge the clinical and research skills that is offered to the community.

The event was supported by Guys Cancer centre, Kings College London, Kings Health Partners, South East London Cancer Alliance and Guy’s Cancer Charity.

However on such a hot day, what things did I see at the event?

A fair amount of my time I was chatting to stall holders about what they were presenting. One of the most important stalls was the Cancer Care Map Stall.

Cancer Care Map is a simple, online resource that aims to help you find cancer support services in your local area wherever you are in the UK. Cancer Care Map is run by The Richard Dimbleby Cancer Fund charity.

So why is that stall important for me? Two reasons to be honest. I am known for running carer groups, plus I network with unpaid carers a lot. With my links to health and social care services, it is about time I started a cancer carer group. I have always wondered what happens to those caring for someone with cancer. Where do hospitals send them? Are carer centres focused on cancer carers?

With Cancer Care Map, I can advertise my group although I still would need support of the hospitals. It is important carers are given a voice and they should not be forgotten. The other reason is Cancer Care Map team will provide resources for my carer information stall.

I also visited a few other other stalls, but here is a small list of the ones I visited.

Speech and Language stall
Physiotherapy stall
Tree of Hope
Cancer Research UK
Dietitians
Occupational Therapy stall

At the start of the event, we were given an opening speech by David Cheeseman who is director of strategy at Royal Free Charity. Plus an opening speech from Anne Rigg who is consultant medical oncologist and medical director for Cancer & Surgery.

After the inspirational talk, it was on the the fashion show. I was inspired by the models energy and creativity.

The audience certainly enjoyed the show and it was a great turnout.

After speaking to more stall holders, I bumped into Jannike Nordlund who is the Patient Involvement Lead and Cancer Improvement Manager South East London Cancer Alliance. There will be some good focus for carers so watch this space. I still need to chat to the 3 other London cancer alliance leads, but that will take time.

Eventually I came back to the main stage to listen to the string Orchestra, which I found relaxing.

All in all, I really enjoyed the event and felt the message so important for those living with cancer and beyond. We need to celebrate the importance of hope, there is always a chance and everyone plays a part.

Thanks for reading.

Promo of Young Carer by Matthew McKenzie

She did not know. She only went along with it. Her mother needed her and that is all she knew. It was time to care, but was it all too soon? Story number 9 from the audiobook “Providing Care & Other Short stories”. I labelled this story “Young Carer”, because I wanted to get straight to the point. What is that point you ask?

The answer is to state that Young Carers exist and in these times they face all sort of challenges. What is a Young carer?

Well a young carer is someone under the age of 18 who looks after a family member or friend who has a physical or mental health condition. This is the story of Jenny a young girl about to finish her primary school. Unlike the carers in the other story, it is not easy for Jenny to reach out for help. Most of the time she just reacts. A lot of her roles focus on guess work and even though recognition of young carers has increased, Jenny still face challenges.

The story starts of with Jenny trying to make sense of her life. She is trying to make sense as to why she is so different from the other children at school. She is quiet about her struggles because she feels guilty and does not want to make anyone else feel guilty. Jenny is lucky to get some support, but is that enough?

As usual the story will be in audio dramatization. I have been experimenting with voices to bring the story to life. With the age of technology, storytelling has changed. Things spring to life and if you are a campaigner or activist then it makes sense to use technology. The story of Jenny can be difficult to listen to as it shows how vulnerable we really are.

We need to raise awareness of young carers or how can we claim this is a caring society? Many carers in my previous stories often had some choices, but when you are young then your choices might be limited. Will keep you posted to how the story develops soon.

To watch my other stories about unpaid carers check my video playlist below.