Monthly Archives: June 2023

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.

Caring for someone with cancer

Caring for someone diagnosed with Cancer? It can be a daunting and overwhelming experience when you suddenly fall into the role of a cancer carer. It is like nothing you could have prepared for, but when someone tells you they have been diagnosed then you are hit by a range of emotions.

You want to react out of desperation, but guilt stops you because you feel you cant compare what the cancer patient is going through. It is important you find out as much information and support as possible. Not just for the person you are caring for, but also for yourself. As mentioned before, emotions a carer can go through can be a rollarcoster ride. Its like you are in a constant state of alert for when things will improve or either ……. become worse.

If you are supporting someone with cancer. Certainly ask around for emotional support. This could be through MacMillan, through your GP or at the local carers centre. Carers should not be forgotten due to the role they play. Carers are part of the team and can make a big difference when someone is coping with Cancer.

You might also want to try find information on extra support at home, so it is important you speak to hospital services or social support. Of course these things take time and there is no magic wand to navigate a complex care system under pressure.

Embed from Getty Images

With the above challenges, it helps to join a carers group, preferably a group that also has those caring for someone with cancer. This is where you can learn from others. You can feel you are connected, find coping techniques, learn about services and developing a plan for the future. Avoid coping in isolation since information can make it easier for your role.

You might also need to advocate and communicate between the patient and the health care team. It can be a tricky role since not all cancers are the same, so it helps to learn as much as you can. Never be afraid to ask important questions.

If you are in the London area, I am starting a new group aimed at cancer carers. You can find out more about the group

From my carer forum page link below and then click on the forum name,

Carer forums

In the meantime below are links that could be useful for finding support.

Brain Tumour Support – http://www.braintumoursupport.co.uk
Cancer Support UK – http://www.cancersupportuk.org
Cancer Research UK – http://www.cancerresearchuk.org
Carers Trust – http://www.carers.org/
Carers UK – http://www.carersuk.org/
Charity Choice – http://www.charitychoice.co.uk
Macmillan – http://www.macmillan.org.uk
Marie Curie – http://www.mariecurie.org.uk
NHS – http://www.nhs.uk/conditions/cancer/

Barclays Bank – Carers Week Awareness event

Welcome back to another blog post by carer activist and author Matthew McKenzie.

It has come to the end of Carers Week 2023. I decided to do one last final event after a successful carers week. This event was located at Barclays Bank over in Croydon.

As part of their support for Carers Week 2023, Barclays Bank was promoting Carers UK information and resources at their flagship UK branches below. As a Carers UK Community Connector volunteer I felt I could help raise awareness of Carers Week with Barclays’ customers.

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.

This would allow me to connect with unpaid carers who could access support.

Just so you know Carers UK is a national charity looking to make life better for the 5.7 million carers across the UK.

As it stands, a carer is a person of any age who provides unpaid care and support to a family member, friend or neighbour who is disabled, has an illness or long-term condition, or who needs extra help as they grow older.

So with the awareness campaign of Carers Week, it helped to promote awareness of caring and promote access to support for carers. Just by chance across the road Barclays bank in Croydon, was also the Carers Information service.

The Carers Information Service provides information, advice and support for carers living in, or caring for someone who lives in, the London Borough of Croydon. The staff were kind to provide me some leaflets incase I need to refer carers there.

I spent several hours that saturday speaking to customers who wanted to know more about Carers UK. I also brought some samaritan cards along. Staff at the bank were kind and supportive. There was a focus on community spirit as the bank wants to support people from all walks of life, including carers.

Barclays Bank also have information available on their website for customers if they are needing to set up access to support someone they are caring for https://www.barclays.co.uk/third-party-access/

Thanks for reading.

Carer reception at No 10 for Carers Awareness week 2023

Welcome back fellow carer readers. Another blog post from Carer activist and author Matthew McKenzie. At the time of this post, it is Carers Awareness week. This is the week where awareness and support for carers is promoted from the 5th to 11th June 2023. Carers Awareness week is an annual awareness campaign. It helps to remind others that even caring for someone unwell does not have to go unrecognised.

Caring for someone close can be a hidden and isolating reality for millions across the UK. So it helps to know what the promise is from decision makers.

I was fortunate enough to be included at a reception for carers and carer representatives at 10 Downing street. Just so you know, that address is the official residence and office of the prime minister of the United Kingdom.

Everyone was friendly and welcoming. Even Larry the Cat

I have always said to others that if you are going to be an activist it would be wise to raise the profile of what you are campaigning for. Of course, most of the time I am trying to network carers together. It helps to understand what we all go through and why we go through challenges as carers.

The reception led by Carers UK for Carers Week was also supported by Age UK, Carers Trust, MND Association, the Lewy Body Society, Rethink Mental Illness and Oxfam. We are all partners in raising awareness for unpaid carers.

It was not just a reception, as we were greated by Minister for Care, Helen Whately.

The minister announced a cross-government roundtable to champion carers’ needs across Whitehall. Helen also introduced more measures to support carers across the country. Despite the challenges the government is under, it is important that there is a focus on carers doing so much to care for those close to them. Unpaid carers asking for hardly anything except to be noticed for their struggle and sacrifice as health and social care face great challenges.

I am grateful to have attended and network with fellow carers and those doing so much to support caring. We want a caring community and it is only fair to promote and support this. You can read more about the fuction below.

https://www.gov.uk/government/news/cross-government-action-announced-to-champion-carers

Thanks for reading.

Carers Week – NHS Toolkit launch at St Georges university hospital trust.

Welcome to a special carers week 2023 blog from Matthew McKenzie carer activist and author. As a carer’s activist, I often try raise awarness of unpaid carers. I even try to raise awareness at hospital NHS Trusts. One of the hospital NHS Trusts is based over in South West London. This hospital is St George’s University hospital.

Basically it is one of the country’s principal teaching hospitals, which is shared with St George’s, University of London, which trains medical students and carries out advanced medical research. The NHS trust has more than 9,000 staff and is one of the four major trauma centres for London.

I actually run a carers information stall at the hospital to remind staff and carers about the carer’s role.

It was great to hear that I was invited to the London discharge toolkit which is being rolled out across all NHS acute trusts in London. The toolkit was developed by Debbie Hustings involving many carer organisations and carers with co-production.

With my involvement in NHS England, I have a keen interest to see how the toolkit increases the focus on unpaid carers.

The toolkit serves many purposes, as in educating NHS staff, raising carers rights and examining challenges in the health system.

I have fedback my thoughts to NHS England regarding the toolkit and a few other things. Below is the link to the toolkit

https://carers.org/resources/all-resources/142-carers-and-hospital-discharge-toolkit-for-london-hospitals-and-community-providers

So on 8th of June I attended the Launch of the toolkit at St Georges university hospital

I was joined by NHS England carer lead for London as we spoke to NHS staff working so hard to make changes for unpaid carers.

We also spoke to carer centre representatives, carers and third party organisations. I picked up a number of leaflets for my carer’s stall, but also spoke to a few people about the information provided.

All in all, staff at St Georges were confident of rising to the challenge to engage and support unpaid carers.

Regional Carer event – Cygnet Hospital Bierley

Welcome to another blog post from Carer activist Matthew McKenzie. I do many roles to connect with unpaid carers and I am now a Expert by Experience Carer Ambassador for Cygnet. I want to keep carers at the heart of healthcare services and one of the best ways to do this is speak at conferences.

Cygnet Health Care is taking on the challenge of and striving to make sure mental health carers get the best support possible. Cygnet are running “Regional Carer Network events”.

This recent Carer Network Event took place at one of Cygnet’s sites. That being Cygnet Hospital Bierley.

Before the event, Cygnet’s Group Service Improvement Manager Lauran Sheridan provided support to make sure Carer Ambassador’s were looked after. It was thanks to Laura that we were given a voice and place to reach out to carers who often feel they are forgotten.

We had a lovely stay at Premier Inn and the food was lovely. It was important to get a good nights rest to feel refreshed and ready to engage with staff at Cygnet and unpaid carers.

Just before the event, I took the time to explore the wonderful City of Bradford and event went walking along some rocks to watch the sunset.

AT THE EVENT

As usual, the first thing I look for when I enter a hospital is to examine what is displayed for unpaid carers. I was glad to see a Carer’s board and advertisements for carer events and initiatives e.g.

  • Events Calendar,
  • Awareness of Carers Week 2023,
  • who is the Carer’s Lead
  • Triangle of Care
  • Family & Carer strategy
    …..and lots more..

I opened the event with a focus on why I think carer networks are so important. I often write books on why carers need to connect and also why services should provide the empowerment and platform for carers to connect. If we connect, we can listen and try to understand the complex world of unpaid carers.

The speakers for the Regional Carer Network event were as follows.

Kate Mercer who is a Family Advocate from Black Belt Advocacy. Kate spoke about carer’s rights. She has worked on national projects with NICE, CSIP, NDTi and NHS England, most recently looking into the quality and availability of advocacy within in-patient settings for people with a learning disability and autistic people.

We also had Christian Young who is the General Counsel at Cygnet Health Care. Christian qualified as a lawyer in 1998, he then joined NHS England as Deputy Head of Legal Services before moving on to Cygnet.

Next to present was Philip Winterbottom who is Head of Safeguarding at Cygnet Health Care. Philip did an excellent presentation on the importance of safeguarding at health services. It is important we all know our duties to provide the best care of those who use our services.

We also was joined by Jo-Ann McAuliffe who is Deputy Director of Nursing. Jo spoke about the importance of recognising carers and how Cygnet can work with unpaid carers.

Lesley Mellor who is the other Expert by Experience Carer Ambassador for Cygnet spoke about her experience of providing care. Lesley is the is the chair of Dorset Parent Carer Council.

During the event, attendees were certainly looked after. We had a lovely lunch and I actually took some of the food home with me.

Cygnet also provided carers we lots of information, where Laura and Jo promoted Cygnet’s new Carers Strategy with more carer information to take home after the event.

All in all I enjoyed the regional carer network event and have connected to a few carers. The network will take time to develop, but we can all learn from each other. As the core of the Triangle of Care, we need to balance the connection so carers are not shut out.

Thanks for reading. More blogs to come for Carers Week 2023

May Carer & Mental Health News Updates 2023

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

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

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

Write to your MP – Carers Week – Stop asking your MP about potholes in the road, ask them something about the state of social care.

Carers’ Assessments webinar 16 May 2023 – Carers UK webinar on Carers Assessments

Somerset Carers Week 2023 – Somerset Carers centre promotion of Carers Week 2023

Northamptonshire Carers Podcast Episode 3 – Spring is in the air – Podcast about the caring and unpaid carers.

Carers Trust Heart of England once again awarded Coventry young carers contract – Well done Carers Trust Heart of England

Right to unpaid leave for carers set to become law – Splended campaign from Wendy Chamberlin.

Richmond Carer’s Centre – Supporting young carers – Richond carers campaign.

Give feedback on care – CQC – Important to give to CQC if you are a carer

Facilitators’guide: NHS@75 – Guide to help explain NHS England;s campaign

POhWER – Got a complaint? Need an Advocate? PohWER can help

RESEARCH PAPERS

Caregiver wellbeing during Covid-19: does being hopeful play a role? – Paper written by Juliana Onwumere, Elizabeth Kuipers, Emilie Wildman, Ava Mason, Daniel Stahl

Family intervention for psychosis: Impact of training on clinicians’ attitudes, knowledge and behaviour – Paper written by Jacqueline Sin, Steven Livingstone, Maria Griffiths, Catherine Gamble

In one’s own time: Contesting the temporality and linearity of bereavement – Paper done by Katherine Kenny, Alex Broom, Emma Kirby and Damien Ridge

Diversity BAME Mental health news updates

  1. Carers UK  good practice briefing for supporting Black, Asian and minority ethnic carers
  2. Caring for the carers: ITV Meridian presenter Sangeeta Bhabra’s letter to her younger self
  3. Black, Asian And Ethnically Diverse Carers – Carers Manchester