Cancer Care – Left Behind

Welcome back to a quick blog from Matthew McKenzie – Carer activist. What is a carer activist you may ask? Basically, I campaign to raise awareness of unpaid carers caring for someone going through long term illness. The bonus is that I have lived experience of providing unpaid care and support to someone close with mental illness.

I also provided care and support to a dear old friend who I have known for many years. He suffered from cancer in the later stages of his life and when he passed away, I was left with a gift to raise awareness from writing books.

Just last week I came across a report on how UK cancer care ‘lags behind’ other countries.

Taken from the sky news report “The latest figures for NHS England show that some 76.3% of patients urgently referred for suspected cancer in June were diagnosed or had cancer ruled out within 28 days – above the target of 75%.”

You can read the report below.

https://news.sky.com/story/uk-cancer-care-lags-behind-other-countries-as-experts-highlight-ticking-time-bomb-13200322

As facilitator of the London Cancer carer forum, it is depressing news to hear the UK lagging behind. While the someone living with cancer is desperate for treatment, the family or close friend are also anxiously waiting.

It is important the Department of Health and Social Care reform their 10 year plan for the NHS and be inclusive with patient and carer voices.

Going back to my books. I have just published my first book on the experience of cancer caregiving. The book focuses on the following chapters.

Chapter 1: The experience of cancer caregiving
How carers may feel when they find out that someone close has been diagnosed with cancer

Chapter 2: The battle begins
What is expected of the cancer caregiver

Chapter 3: Battling for you
Avoiding being lost in the maze

Chapter 4: Getting involved through lived experience
Inspiring cancer caregivers to get involved in shaping health services

Chapter 5: Looking back
Not caring forever, so we eventually have to look back.

The book will be promoted slowly as you never know I probably will have to adapt or change a few things. You can get hold of the book on Amazon.

Carers UK delivers letter to the government

Welcome back to another blog post from carer activist Matthew McKenzie. I have just recently watched a news piece regarding Carers UK latest campaign. For those who do not know, Carers UK is one of the UK’s biggest national charities that focuses on support for carers.

You might have already seen a couple of blog posts about previous campaigns from Carers UK and other carer support charities. At the time of this post, there are around 5.7 million carers around the country caring for someone with long term illness.

Most people want to provide unpaid care, they want a better outcome for those with long term illness, but what people do not want is to provide unpaid care with little or non support.

Each year, support for carers has been reduced within the health and social care sector. Important decisions have to be made and in the end this lies with the new government. Still, it does not hurt to provide some guidance on what Carers UK have heard from carers.

There are 8 priorities which Carers UK want the government to be accountable for.

Reform and significantly increase Carer’s Allowance and other social security payments for carers.
Deliver an ambitious and fully funded National Carers Strategy.
Invest in breaks, respite services, and introduce new legislation so all carers have the right to regular and meaningful breaks.
Make the NHS the most carer-friendly health service in the world.
Introduce a right to paid Carer’s Leave for working carers.
Recognise caring as the 10th protected characteristic under the Equality Act 2010.
Invest in social care services so no one has to care alone, and so Local Authorities are able to meet their existing duties to unpaid carers.
Provide more support to help carers manage their health and wellbeing.

The letter was signed by 10,611 people who feel passionately about the plight of carers. A lot of promotion went into the importance of the letter, but you can also watch the report from London Live news which was reported by Sachelle Connor.

Report from London Live News

August Monthly Carer & Health News Updates 2024

Here is the latest carer and mental health news for the month of August 2024 by carer activist and author Matthew McKenzie.

SIGN UP TO NEWS SITE HERE

August 2024 Carer and Mental Health news <- Read more news items here.

For the August edition on unpaid caring and mental health we have the following news items.

Carer Videos

Triangle of care news

Triangle of care newsletter – June 2024

New Audiobook release – The Poetry book of Mental Health caring

This special edition includes poems from unpaid carers across the country. View more details of the audibook in the link below

The Poetry book of mental health caring: Special Edition

Latest Carer news items

Ethnic carer and minority news updates

A caring community by Matthew McKenzie

Caring can be difficult, especially if the role comes on unexpected. You have to be there for someone, find out what the symptoms are and do your best to help improve quality of life. It could happen to any of us, but the challenge is not all of us want to care and there are times when it is ok back away from the role.

What is more challenging is developing a community that cares. How can a caring community relate to someone who tries to be there for others?

We are all connected and we all have needs in a society that has become increasingly complex. We do not know what is around the corner, all we can do is try to be there for each other. As with unpaid carers, we cannot fully depend upon health and social care, there will be times when we have to be resourceful to support one another.

This is the same for communities. We cannot always depend upon others to be there when times get tough, yet we are all connected.

Civilisation, democracy, freedom and law can often be fragile and can break just like the branches of a tree. The branch can sway this way and that, but the wind of change can blow like a hurricane to cause the branch to break.

So we may find before long that we have to pick up the pieces.

The thing I am trying to get at is caring is not enough. Caring for a loved one might set an example, but unfortunately I have learnt that more examples need to be set. We need a society that cares. We need a community that values being there for others. A caring community can bring so much for inclusiveness, caring, learning from others and standing up for what is right.

We are all connected as for one day we will either care or be cared for. There is value in being there for others, no matter what uncertainty the future brings. There is value of giving just a little bit more in volunteering and sharing our common ideals. A caring society seeks out what is common for all of us, not what makes us all different. We all have the same needs, the same dreams and we all want to belong.

Caring can be difficult, it can demand sacrifices, energy and time. In the end who can say it is worth the effort? All I know is caring will benefit everyone as we are all connected.

Thanks for reading

Caring for someone with cancer by Matthew McKenzie

We dont often always notice, but behind someone diagnosed with cancer is usually a close relative or friend. Often we focus on what support can be provided to the cancer patient. The person affected by this awful disease can be fighting for their very life and will need all the support they can get.

but what about the cancer caregiver?

All too often we may forget that the carer will need support for themselves as well. It might not even dawn upon cancer carers as they focus all their efforts on caring for their loved one. It might be a partner caring for their other partner, a young carer supporting their parent. Or even a parent caring for an elderly relative. The caring situations can be long, complex and emotionally trying.

The situation above and many other reasons are why we need to raise awareness for cancer caregivers. It can be so easy to be hidden as a carer and hope for the best. Just because the carer is not suffering the physical and emotional affects of cancer, does not mean they should not be given support.

With Cancer Support Macmillan being the UK’s leading charities fighting against cancer, I help raise awareness of families affected by Cancer. Cancer is not contagious, but anxiety, uncertainty and depression cancer brings will affect those close by.

Not everyone will think of themselves as a carer, they are more than happy to focus all their efforts just so their loved ones see another day. It is so important we stress to someone caring that they do have access to support and this includes their carer’s rights.

No one should have to give care if it makes their quality of life suffer. Those caring for someone might need emotional support. They might even need their caring situation assessed, especially if the carer is unable to work. Some people caring for someone with cancer might actually need time off for work to support the cancer patient. This links to carer’s rights at work.

With the London Cancer carer forum, which I run online for the last Wednesday of the month. I seek to bring cancer carers together to hear experiences and feedback. Caring for someone with cancer is not the same as caring for someone with a broken leg. Sometimes we need to be heard by those who just “Get it!”. Cancer carers will not feel judged or feel as if they let someone down. Caring for someone without being heard or being connected can lead to isolation. Carers can feel they are coping by themselves without an outlet so it is important a group can provide some peer support.

If carer isolation was not the main issue, then there is advocacy and navigating the health and social care system. Not everyone will be skilled on knowing who to ask and what to ask if their caring role changes. Advocacy and health system guidance can be useful when a carer does not know where to turn. It is important carers have a chance to be referred to local support and be assessed on challenges in their role.

Cancer is one of the most difficult and damaging illness to impact friends and families. It could happen to any of us and it is so important we get the knowledge to lessen the impact. Please check out Macmillan’s London Cancer Community Newsletter for August 2024 for more information about Matthew McKenzie’s Cancer carer group and other cancer support initiatives below.

Macmillan Cancer support newsletter for August

National ethnic mental health carer forum update July 2024

Been a while since I have done a blog to update the carer forums and groups that I run. I thought to avoid the summer heat and stay inside in order to provide a brief update of the National ethnic mental health carers group for July.

The agenda for July was support from Carers UK who are a national charity fighting for the voice of unpaid carers in the UK. There are millions of carers providing care and support for someone with long term illness. This includes minority carers.

Carers UK presents on the Impact of caring.

Carers UK examined the latest Office of National Statistics and how those figures showed the impact of caring. It is good to get an overall picture of caring through the country.

For the ONS census of 2021 – The Office for National Statistics showed

There are an estimated 5.7 million carers in the UK
1.8 million care for 9 hours a week or less
1.5 million care for 50 hours a week or more
Every day 12,000 people in the UK become carers

Carers UK provided some information aimed at those caring for someone with mental illness. This was that not everyone with a mental illness needs a carer, and not everyone who needs a carer has one. People with mental illnesses have lots of different needs like anyone else, and these will affect the support they need.

Early last month I did a joint talk with someone from Mind who are a charity that focuses on support for those with menta illness. Carers UK reminded members of the forum about the resources Mind has on their website.

Carers UK were also kind enough to speak about the impact of caring on minority ethnic carers. Carers UK presented how experiencing mental health issues, may make the caring role even more challenging. Rates of mental health problems can be higher within some Black, Asian and ethnic minority groups, as a result of racism and discrimination, and social and economic inequalities.

Carers UK also noted that experiencing prejudice, discrimination or harassment when accessing services can lead carers feeling distrustful of support services as a result.

This can also be down to struggling to obtain information and advice due to language barriers, plus not having the opportunity to shape and influence health and social care services. Some carers may feel that they have no ‘voice’ in the system, and feel unable to complain or raise concerns about services

Carers UK give a wealth of information and resources aimed at unpaid carers and those who support carers. Carers UK representative Zahra presented some of the amazing resources that carers can use.

Update from members of the group.

As usual the national ethnic mental health carers group supports the NHS England framework, which is the Patient Carer Race Equality Framework. The forum provided space for carers involved at their NHS trust to update. We had updates from West London Health trust from their recent PCREF listening events.

We also had an update from Wandsworth talking therapies, where they updated on the recent “Bridging Minds” forum and how the community of Wandsworth provided feedback their experiences on the impact of racism and discrimination. I also managed to attend the forum, which was supported by Wandsworth Carers (see poster below).

There was an update and engagement from Oxleas on their focus for ethnic minority carers, but there is still more work to do. Other updates were from carers involved at Cambridge & Peterborough NHS trust and also Kent & Medway NHS trust, plus Cygnet who is a provider of mental health services.

For the forum on the 30th of August, we will look at the topic of carers rights.

Thanks for reading.

Spoken Word event at the Haringey Service User & Carer Forum.

Welcome back to a quick update from Carer activist, author and poet Matthew McKenzie. This update is from an event I performed at which was held over the Chestnut Community centre over at Haringey. The event was a spoken word event, which was part of Haringey Service User and Carer Forum.

A quick note is you can actually download poems and listen to songs if you scroll to the end of my update of the spoken word event.

The Haringey Service User and Carer Forum aims to provide a place for past and present service users and carers to learn about new developments and to provide feedback on services.

The forum provides an opportunity for people to discuss their experiences and to share views with staff so that their ideas can help to influence the way services operate. This meeting is organised by Barnet, Enfield and Haringey Mental Health Trust.

Barnet Enfield and Haringey Mental Health NHS Trust provides integrated mental health services in Barnet, Enfield and Haringey, and also provides community health services in Enfield. They look after people’s mental and physical health in hospitals or in the community, and provide a range of mental health services for young people and adults.

So for the 8th of July, I attended the spoken word event hosted by Martin Weegmann who is a Clinical Psychologist & Group Analyst at the mental health trust. We were joined by many who also performed, songs, spoken word, poetry and art.

Some of the art presented at the event, I managed to take some pictures. This was in order to help promote the work by Nicola Newman

You can view more of Nicola’s art at her Instagram page.

https://www.instagram.com/visions.of.balance/

I was joined by Jo Lambert who does poetry to help express mental wellbeing, mental health experiences and also carer experiences. Jo and myself have a poetry circle to help promote carer awareness. You can watch our performance off my YouTube Channel.

We also heard excellent poems, songs and spoken word performed by others at the event. Obviously I could not record them, but I spoke to a few who loved to have their work shared off my blog site.

A number of songs were performed by Victoria Lamb who has her songs hosted off her soundcloud page, which is linked below.

I enjoyed being part of this excellent group that has a focus of community empowerment.

I often try attend the SU forum when I can as Barnet Enfield and Haringey Mental Health NHS Trust are supportive of my work engaging with carers. I look forward to the next spoken word event.

You can also check out many of the poetry from those with lived experience from the following book which can be viewed below.

Preview and download book below

Book – final Download

Thanks for dropping by.

SE5 Forum for Camberwell – Feel Good Festival

Welcome back to a quick update of an event I participated in. As you might already know, I have a Carers Stall which I use for raising awareness of unpaid carers. The stall is often located at hospitals or events.

This time I took the stall to a festival over in the London Borough of Southwark. The Camberwell Feel Good Festival returned for Summer 2024 with two Saturday festival events, packed full of fun and engaging health and wellbeing activities, free food and music, and vital support services for all ages.

With support from Catherine Gamble who is a fellow at the Royal College of Nursing, there was various stalls promoting wellbeing, information and information to make attendees feel good. Unfortunately the weather had other ideas, but I was amazed at the turnout.

However my stall contained information from Carers UK, Macmillan Cancer Support, Parkinsons UK and Southwark Carers which provides support to unpaid carers in the borough of Southwark.

The Event Highlights at the festival are listed below:

Yoga, tai chi and physical exercise for all ages
Mindful arts and crafts stalls
Children’s active fun and games
Free lunch and pantry from local food charities
Children’s no-cook food workshop
Live music and choirs
Health support services stands
Gardening & food growing workshops
NHS physical and mental health advice and support

We also had some Members of the RCN lived experience group helping our with their own stalls and I was delighted to meet Hannah Cadogan who showed me the quilt she made during the pandemic to raise awareness. She also showed the book that promoted the quilt called “The Making of the Cassel Quilt”

It was not long before I checked out some other stalls located next to my carer stall which I shared with Catherine.

The Maudsley NHS and Kings college NHS stalls were out promoting health and wellbeing. This stall was smoking cessation and I actually took a CO2 lung test to see how healthy my lungs were.

Also at the feel good festival was the Maudsley Gallery, which provided arts and crafts for young children. Children were making shakers to go along with the music at the festival.

I then explored other stalls located at Camberwell Green park.

All in all, I had an excellent time helping to promote wellbeing, advice and information. I would like to thank Catherine for involving me and SE5 Forum for putting on an excellent festival.

Time to be heard – Bridging Minds Forum

Thanks for checking in. I have exciting news for carers from an ethnic background. Wandsworth Carers are running their Bridging Minds forum on the 19th of July from 3 pm, which will take place at Balham Library Hall, 16 Ramsden Road, London, SW12 8QY

BAME forum will be Facilitated by the Community Empowerment Network, Wandsworth Carer’s Centre, NHS Wandsworth Talking Therapies

The forum will focus on discussions around race, ethnicity, and culture in relation to mental health. The forum will feature culturally specific foods, and all Carers who sign up and attend will receive a £30 supermarket voucher as a token of our appreciation for their time and input.

I will certainly be attending this exciting forum and hope ethnic carers who support those with mental illness from the borough of Wandsworth can drop by.

To book please email either Lindsey.cross@soundminds.co.uk or panashe@wandsworthcarers.org.uk

See you there

London Cancer carer forum – July 2024

Welcome to another update from Carer activist Matthew McKenzie. I run many carer groups aimed at unpaid carers, one of them focuses on the experences of those caring for someone with Cancer.

Caring for a close relative can be an isolating experience, especially when trying to navigate the health and social care system. Carers can often be providing care and support behind the scenes almost forgetting about their own health and care needs.

If you are caring for someone with cancer, feel free to check out my next carer forum which I run once a month online for the last wednesday of that month.

I will also cover carer rights. Plus for those from minority backgrounds there is an exciting opportunity to share your experiences. We can often ignore those from ethnic groups providing support and unpaid care.

So Amrit Kaur from East London university is conducting research to hear from Punjabi Sikhs who have cared for someone with cancer. Please see poster below for more details or email Amrit at u2195627@uel.ac.uk

A Caring Mind

A blog for carers of mental health and cancer