Tag Archives: carer

London Cancer Caregiver Forum August Update

Welcome to my first ever update of my London cancer carer forum. This carer forum is different from my other carer forums. The major difference is this forum focuses on families, friends and carers who care for those with cancer. My other 5 groups focus on those caring for someone with mental ill health.

This forum runs on the last wednesday of the month and covers the whole of London. The forums main focus tends to be hospital engagement. Cancer Alliance and cancer leads at hospitals should have a keen interest to support carers who try navigate the cancer pathway.

For August we had our peer session to hear what challenges cancer caregivers face. If those seeking to improve cancer services do not engage at grassroots level then we risk guessing what challenges people face. It is so important to network and educate each other. It is very important for carers to be empowered to network especially for a peer supportive environment. It is impossible for me to be everywhere, so with a network we can have members looking to attend cancer service engagement events. Carers should be encourage to feedback their experiences.

For our very first London cancer caregiver group we were joined by Professor Tracey Devonport from the university of wolverhampton.

Professor Tracey is from the Faculty of Education Health & Wellbeing and although she presents at my ethnic mental health carer group. She has a large focus on cancer care research. This also includes research on cancer caregivers.

For our August London Cancer caregiver group. Professor Tracy presented on “Coping Conversation’s for Cancer Carers Forum”.

Prof Tracy ran a presentation and session on coping skills for carers who often can find themselves overwhelmed when providing unpaid care.

Each member of our group fedback what challenges we face when providing unpaid care. We also gave ideas on what we use to help us cope. Tracy presented her ideas on Dyadic Coping

All in all our forum worked out ok. There is still a lot of work to do as the group looks to develop the following.

  • Increase a chance to feedback experience
  • Learn about your role from other carers
  • Engagement from hospital services
  • Develop a cancer caregiver network.
  • Learn about the peer environment
  • Engagement on university research
  • Increase the focus on those who care for someone with cancer
  • focus on mental health caring for cancer
  • influence cancer services
  • Hold to account

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/

A Right Royal Celebration

Welcome to another carer blog post by carer activist Matthew McKenzie. I raise awareness of carers who try so hard to provide unpaid care to loved ones. However I am not the only one fighting for carer empowerment or making sure carers get counted.

We have several national organisations promoting the value of caring. One of those charities is Carers UK. A major charity giving the voice to carers all around the country. I have been doing quite a few things for Carers UK, one of them being the co-chair of their ethnic/BAME carers advisory group.

I have also attended and spoke at Carers UK conferences and have been given major support regarding my poems.

So today was a special treat in order to celebrate all what good works are promoted across the nation. We were invited to the Royal Garden Party, which was a special occasion due to the recent coronation of King Charles III.

At any party or event I tend to network or try to network, so it was great to meet other carers including CEO of Carers UK Helen Walker.

The weather held up the best it could so the day went perfectly well, but I did bring an Umbrella just incase. As we walked across the grounds we marvelled at the Royal gardens. I can imagine myself being lost in thought as there was so much to see.

After walking through the gardens, I could hear music growing louder and this was coming from the royal bands. We were spoilt for choice as there were two bands playing at each end of the grounds.

We then waited to greet the royals, but I was hungry left for some food and came back only to find the Royals had greeted one of our group. Serves me right for being too greedy.

Still the food was marvellous, but the problem was that I ate the food too fast in order to try network again.

The staff were pleasant and friendly and often stopped to chat to make sure everything was ok. I felt I was the king the way the staff treated me. One of them showed us some Ice Cream as she explained the different flavours.

It was not long before it started to rain with that famous British weather, but by that time I had talked to the other carers who contribute so much to carer movement.

All in all, I felt special and to be treated to such an important function shows the Royals have a focus for a caring community.

If you want to find more about Carers UK, check out the link below.

https://www.carersuk.org/

Latest carer story – Just when I needed you

Welcome back fellow carers. This blog is by Matthew McKenzie, carer activist, author and poet. I write and campaign to raise awareness of unpaid carers. A lot of my focus goes on those caring for someone with mental illness.

I also have a focus on cancer carers, but more on that in a moment.

I have just released my 6th audio story about the importance of carer peer support. The story is called “Just when I needed you”. You can actually watch the story for free at the end of this blog.

The audio story revolves around the struggle to show empathy and the challenge someone faces with their faith. When people care for each other then the community carers, but this is not always the care as the carers in this story have their own struggles.

It takes a couple to walk that journey of someone damaged by the community. They are there for that person when he feels the world has abandoned him. The couple find a bond with their close friend as Barbara who is providing unpaid care can sympathize because she also experienced mental illness.

The audio story provides a story of hope, but raises challenging questions for those caring for someone. Things are not always so clear cut and it can be very difficult to be involved in someone’s care. This is especially problematic if someone is suffering depression.

Watch the video below and enjoy the carer awareness.

My next audio story will soon be released titled “A story of Hope”

April Carer & Mental Health News Updates 2023

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

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

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

Blackpool Carers Centre – Social Enterprise Solutions – Video of Blackpool carers centre services

Angela Rippon courageously speaks out on being carer for mum – Summary of Angela’s story caring for her mother.

The chaos of unpaid caring while in employment, part one – With more and more of us taking on carer responsibilities, it’s time for HR to help develop working practices that work for all, says Jo Gallacher

Lancashire health trust Triangle of Care accredited by Carers Trust – Lancashire and South Cumbria NHS Foundation Trust has been recognised for its continued efforts and commitment to improving the way it works with carers and families.

Carer Fatigue and Burnout: What It Is and What To Do – While caring for a loved one can be very rewarding, given the physical and mental demands it often requires, experiencing fatigue and burnout from the role are very real possibilities.

Cambridge University Hospitals – Support for Carers – If you are a staff member with caring responsibilities, or if you manage a staff member who is also a carer, this page will provide you with information and support.

Carers’ Hub Rochdale in running for Tesco community funding – Carers’ Hub Rochdale, part of n-compass, is bidding for a cash boost from the Tesco Community Grants initiative.

Carers Active April – Carers UK – Carers UK Active April campaign month supporting unpaid carers to be physically active, and raising awareness of the the benefits of physical activity for carers and the barriers they may face.

Give feedback on care – CQC – CQC use what people tell the to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.

Young Carers Alliance – The Young Carers Alliance is a growing network of over 150 organisations and 350 individuals committed to changing this and improving the support available for young carers, young adult carers and their families.

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

#ExpOfCare week 24th/28th April LOTS to get involved with! – Experience of Care Week 2023: Improving experiences of care across health and social care.

Preparation for consultation on acute mental health care of Westminster, Kensington & Chelsea, and Brent – CNWL

Latest community mental health transformation newsletter out now – Black Country NHS

I am proud to support the ambition of no wrong door to accessing mental health care – NHS England

World Social Work day 2023

Welcome back to another carers blog by Matthew McKenzie. It recently was World Social Work Day, which took place on the 21st March 2023. The theme for 2023 World Social work day was ‘Respecting diversity through joint social action. Social workers are very important if you are caring for someone. It helps to get that extra support regarding your role as an unpaid carer.

Social workers are becoming a rare resource these days, so it is important to raise awareness of social workers. It is also important to value them. World Social Work day allows social workers worldwide stand together to send the common message of relieving people’s suffering, fight for social justice, and improve lives and communities.

Social works help people with health, psychological or social problems. This in turn builds healthier communities. It was fortunate I was allowed to present at South London and Maudsley NHS Foundation Trust World Social work day event.

The event took place at Maudsley’s conference centre “Ortus”

The event organisers used the theme on learning from the voices of service users and carers in mental health social work.

We had some great speakers from that event. A special mention to Jo Lambert and her mental health focus. You can check out her books in the link below.

Recognition Project

I started off my presentation on what I feel was the importance of world social work day. Of course I asked the audience what they thought about the awareness day. I then read a poem from my book “The Poetry book of mental health caring”

You can see my presentation from my video below.

The poem I read was called “My Story”

I then told how my carer’s journey unfolded and how Social workers worked with carer and service user.

How did Social workers helped my role as a carer?

  • I explained to the audience that it was important that social workers are knowledgeable of the services and explained them to my mother and myself.
  • Some social workers saw me as an asset. Some social workers saw me as part of a support network helping to support my mother.
  • It is important social workers use psychology to help heal. Some social workers talked about what can be done, rather than what could not be done, so constantly providing a positive focus.
  • One of the most important roles of a social worker is explaining about carers assessment. The carer’s assessment is an important tool for a carer to learn more about their needs.
  • Lastly referring me on to carer support was invaluable
Embed from Getty Images

All in all the NHS Maudsley gave me a powerful voice to promote my voice as a former mental health carer. I hope awareness of social workers continue to grow

Review of Kingston – Real Estate Poetry Project

Welcome back to another carer blog by Matthew McKenzie

It has been a while since I did an event review. To be honest I ought to be attending a lot more events, especially things to do with mental health awareness, carer awareness or even book conferences related to my content.

Well you are just in luck, I recently was a special guest poet at the ‘Come Rhyme with me’ series of creative writting workshops. These workshops are hosted by award winning poet Michael Groce. The event was brought together by Voluntary Action Kingston.

There often can be fast paced changes in the community, some positive and some bringing changes which causes people to be isolated. Ethnic communities can often feel isolated, so it helps that there are ways to help people use their voice in ways that are powerful.

I have always found poetry to be powerful. The creative writing workshops are held in the Cambridge Estate over in the London Borough of Kingston. I found at the event all were welcomed and the community in the borough of Kingston are talented and passionate about their experiences.

You can see my poem from the video below.

If you are from the borough of Kingston, you can book on the event below.

North West Regional Carers Network Event

Welcome fellow carers and readers. Aren’t you lucky today? I am publishing 2 blogs in one day. To be honest I was mean’t to publish 4, but I ought to get some rest. Lots of meetings tomorrow.

Due to being passionate about carers and passionate about a carer’s network. I was fortunate to be invited to speak at Cygnet Healthcarer’s carers network event. The event took place at Cygnet Hospital Bury.

Cygnet Healthcare look to provide the best service for their clients and this includes those who provide care. There is always lots of work to do, but they keep striving.

The event was called “North West Regional Carers Network Event”. Cygnet Healthcare have many locations, so it was brilliant to talk to professinals and carers about the importance of carers and the importance of a carers network.

I was also joined by another Carer who spoke on the day. Lesley Mellor who is the chair of Dorset Parent Carer council. She has an amazing personality and is an expert by experience regarding care and the importance of including carers. Laura Sheridan who is Group Service Improvement Manager for Cygnet Healthcare looked after us well.

We stayed at Premier Inn hotal which provided excellent service and lovely food. I am impressed by Laura’s dedication and philosophy for quality service and inclusion.

I was honoured to open the event and as usual due to my latest project on carer poetry, I read poem number 27. The poem was called “The Carer’s Network”, although to be fair I was struggling to choose which poem to read.

During the event, I spoke about my carer’s journey, the importance of carer’s being included and involved the audience in a quiz. Both Carer’s and professionals were knowledgable in their fields and were always honest and friendly.

We also had the following speakers

Vicky McNally – Director of Partnership and Engagement, Cygnet Health Care who spoke about the progress Cygnet Healthcare has made so far and the plans for the future.

Kate Mercer – Family Advocate, Black Belt Advocacy. Kate spoke about the importance of advocacy and educated us what rights carers have.

Sharon Spurling – Head of Network Development, Carers Trust spoke about the importance of Triangle of care and how Cygnet Health care are implimenting the triangle of care across their sites.

Overall, I enjoyed the day and enjoyed mingling with the speakers. I think I might have ate too much and doozed off, but that was my own fault. Looking forward to more conferences.

Latest carer stories from Matthew McKenzie

Welcome back to my website. I have been busy working on my latest projects. I am raising awareness of unpaid carers. My speciality focuses on those caring for someone with mental illness.

As a poet and author I have several books on amazon that focus on the lived experience of unpaid carers.

I have just released my latest story, which can be difficult to listen to. Still, it is important to tell things how people experience them. My latest carer story called “Angry” focuses on a young mother thrown trying to fight for the right to care for her daughter. The struggle is made difficult because the mother is angry at the world, but the system is so cruel that her daughter is now at risk. Can her mother provide care in time?

So far I have produced 4 other carer stories which you can watch below. These carer stories are all taken from the audiobook that I am working on. The audiobook will be called “Providing Care & Other short stories”. As usual the audiobook will raise awareness of those caring for someone with mental illness.

The next carer story is titled “Never thought it could be me”. This story explores what it is like to become a first time carer. We all think we might provide care when someone gets old, but life can change at any moment.

Below is another story about providing care. There are those thrown into providing unpaid care because family members feel they are not obligated to care. This story below explores the world of a young girl trying to provide care for her mother, but does her family understand why she is providing care?

The next story below “Digging out of a hole” explores the role of a male carer or what his understanding of a male carer is. The problem is that the young man is doing his role out of concern for his sister. No one else is there to help, so he feels he has no choice. The last thing he is concerned about is being thought of as a carer.

Below is my first carer story which is the main theme of the book. The story below is called “Providing Care”. This story explores the situation of a first time mental health carer. I feel the story below does rush things a little since as I believe the process of discovering mental illness can be a slow painful journey. If you wish to view the story, click on the video below.

Mental Health Service in Greenwich

Greenwich Mental Health Hub is holding a PAID opportunity(£25 retail voucher) for their focus group events to help shape mental health!

How your Services Users/Carers can sign up:

Where:

Greenwich Mental Health Hub, 1st Floor, Equitable House 7 General Gordon Square London SE18 6FH

When:

Tuesday 23rd February 2023, 4:30pm – 6:30pm

Wednesday 8th March 2023, 4:30pm – 6:30pm

Wednesday 22nd March 2023, 4:30pm – 6:30pm