Category Archives: Aimed at Carers

Blog posts aimed at non paid carers caring for someone unwell.

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.

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

Positive Talents show – Made by Carers for Carers

Welcome to another update of an event for carers. This blog is of the special event produced by carers for unpaid carers. The event was developed by unpaid carers Faith Smith and Annette Davis.

The point of the event was a chance for carers who care for someone unpaid to come together and showcase a talent to link carers together. This was a special event because it was produce by unpaid carers for unpaid carers. Both Annette and Faith felt carers have something to offer that can bring the community together. After viewing an exhibition, both carers felt inspired to develop an event which took some months of planning and organising.

I have known Annette and Faith a very long time and we often collaborate when there is a chance. So with the support of Carer network lead Laura Sheridan at Cygnet, we felt this would be a chance for Carers of London to learn from each other and develop confidence to share their talents.

For the first ever Positive Talents show took place at Cygnet ChurchHill hospital over in Lambeth. The location was very easy to get to, with good transport links.

There was also a good turn out as we got support from unpaid carers wanting to attend to reduce isolation and also carers who wanted to showcase their talents.

Annette and Faith opened the positive talent show with an explanation of to why carers should be given the chance to show off any skills or talents. It is just a matter of being given the chance.

We were then shown a video of a carer performing poetry. The poem was performed by Brenda Onatade who could not be present. However you can see Brenda perform her poetry below.

Next we had a video from Jo Lambert who also could not attend, however Faith gave a great talk about the video which you can see below

You can see Jo Lambert’s video called “Fairy lights of Hope” below

We then had a talk by Annette on Looking after yourself. Her talk was titled LAM “looking after ME”

As being a poet, I wanted to showcase the importance of carers recognising their talents and performed a poem called “What helps me”

I also did a learn and share session for carers to relate to the poem, which you can view below.

There was then a focus on positive wellbeing messages that were shared by the audience of carers. We all shared what was positive for our own health.

.After my poetry performance we then moved onto a comedy routine by another carer called Jo.

The routine helped destigmatize mental ill health as sometimes the only option for difficult challenges is laughter. You can see the comedy section below.

Next was a game of charades, where carers can feel welcome and join in the activities

Then next was refreshments and food along with networking. The food was prepared by Cygnet chief Titilayo

For the 2nd half of the Talent show. We had a presentation from Southwark Wellbeing hub on their focus for Black carers. There is a launch of the Black Carers Project, which I have included the poster below.

Then we have a dance section from carer Jackie Christie, where you can see the performance below

After the lovely dance show, we had another comedy routine, this time performed by Faith Smith, again the video is placed below.

Next was my 2nd poetry performance on the importance of setting a legacy.

The last two performance were led by Annette who did a few song sessions

I felt the event turned out very well since this was the first ever carer talent show. We all shared from each other and felt that we were part of something very big. Thanks for the support from the following carer centres who also helped to promote and connect carers to each other. These being Lambeth carers hub, Sutton Carers and Imago community and a special thanks to Cygnet for hosting the event for carers, plus providing food.

All who took part were awarded certificate, so well done to them.

Given the chance, carers can do some amazing things for the community. Carers can be supported to showcase their skills and talents.

Caring for People with Psychosis and Schizophrenia – free course

Great news for those caring for someone with Psychosis and Schizophrenia. Kings College London is starting up their free online course for carers, which should be available from 20th of May 2024

When starting out as a carer for a family member or friend, many are not aware of the pitfalls and challenges. We all want to be there for our loved ones, but we do not want to make any mistakes.

The journey as a carer can be fraught with many problems, so it is worth getting as much information and education as possible.

Designed by Dr Juliana Onwumere, the course was designed with carers in mind. The course runs for 4 weeks and is available on the platform FutureLearn.

To access the course check out the link below.

https://www.futurelearn.com/courses/caring-psychosis-schizophrenia

Carers UK – Southwark local history walk for carers

April is approaching fast and if you have been eating all the chocolate easter eggs, then its time to get active. Luckily Carers UK a national charity that campaigns for carer recognition is running an event where carers can get active and reduce isolation.

Join Carers UK for a gentle stroll around Some of Southwark’s historical sights. See poster below.

How the Budget 2024 will affect carers

Media courtsey of BBC News

Here is the latest blog for the month of March. Did you know that on the 6th if March, the Chancellor Jeremy Hunt announced the budget for spring 2024? As a carer, you might not think the budget is important. You might think numbers, figures and percentages are not worth paying attention to. As a carer you might not want to be bothered with political parties, but as a carer activist I feel we must hear the government and hold them to account on their policies.

I was fortunate enough to present my circumstances as a carer on the BBC news. I wanted to know how the budget would affect my caring role. BBC news also interview Holly Mackay who is the Founder and CEO of Boring Money, plus we had Joanne who also wanted to know how the budget affected her situation when trying to buy property.

Holly Mackay gave her thoughts on what she felt would be included in the spring budget. I also wondered how the Budget 2024 would affect my situation as a working carer. There was not a lot of expectation due to the downturn in the economy, but we all waiting with anticipation. Since I engage with carers through my carer groups, I asked how can carers prepare themselves if their situation became worse. Holly Mackay gave some excellent advice.

Holly Mackey – CEO of Boring Money

You can see the first part of the interview below.

After the budget was presented by the Chancellor Jeremy Hunt. Holly gave an excellent breakdown on how the budget will affect those who are vulnerable. I felt that the “Household Support Fund” being extend was great news for those struggling with energy bills, but many were stating it was a short term fix. I also was hoping for an increase in universal credit for both my brothers. Holly mentioned there will be an increase from £368.74 to £393.45 per month, which is good news.

Still, there was no mention of carers allowance in the budget, plus others would like a National Carers Strategy to transform Government’s approach to support unpaid carers. Holly mentioned there is some support for those who provide care and also work, but it might not be enough to make a big difference.

You can watch Part 2 of the interview in the video below.

Again, as a carer you might think the Budget 2024 is boring and not worth paying attention to. As a carer you might think the news on the government is not worth the time. As a carer you probably might think your MP is not interested about carers. I say that it is incredibly important to hold the government to account on the plight of carers. We are lucky to have a government system where we have the power to vote who we feel serves us best.

You can find out more about the budget in the link below

Budget for Long Term Growth

Carers Trust response to the Budget 2024

Carers UK response to the Budget 2024

Holly MacKay Boring Money website

Come election, I hope all carers do their bit to say who they want in power and also hold them to account.

Thanks for reading.

Strengthening Cultural Sensitivity – Southern Health NHS / Touch Network

Are you a minority ethnic carer in the areas of Hampshire? Do you want to help improve mental health services for someone you are caring for? How about having your carer story being heard? It is your chance to help ‘Strengthening Cultural Sensitivity within Ethnically Diverse Carer Communities’.

It is time to be heard and also have an impact as a carer. Without your input as an ethnic minority carer then it is difficult for services to understand what is a priority for you. With the support of Touch Network CIC, Southern Health NHS trust wants to hear from you.

The next Carer Story meeting is on the 28th of February. If you are a carer whose loved one is using the services of Southern Health NHS Trust, please leave your contact details in the form or email hannah@touch.network.

Please see the poster below and get a chance to be heard and help set priorities.

We are all in this together and together we will strengthen our diverse communities.

Being part of something as a carer

Welcome fellow carers. Here is another blog post from Carer Activist Matthew McKenzie. This blog post is on the importance of being heard. If you have been caring for someone unpaid for a long time, you know what I mean by trying to get your voice heard.

I am sure you would have experienced the struggles of the person you are caring for. It might be their physical health or mental health or most likely both. It would have been so difficult to see your cared for’s quality of life suffer. You want to make that difference and you want the person you are caring for to improve. So you take up the role of unpaid carer.

It is not an easy role, you would have been through countless of hospital and doctors appointments. You might have gone through the tricky dialogue of communicating with the health professional to get a better outcome. There will be times that you have to take time off work to provide care. If you are not working then there would be challenges to meet bills and payments. This all adds up to mental and physical exhaustion and you wonder to yourself does anyone pay attention to what you are doing?

You are only trying to be there for your family, just like any other family. You know that the health & social care system is struggling, but if you do your bit then the cared for would not have to rely on the NHS.

Still; you have begun to realise that caring is not enough. You have been through so much for far too long and you want to be heard. You have been through such a long road, something has got to count. There must be others out there who have been through the caring role and would have knowledge to share. It has taken sleepless nights, constant anxiety, backbreaking work and feeling guilty from lashing out because you feel you have not been included.

The good news to all of this is that there are ways to be noticed as a carer. The difficult news is that you must take the steps to be heard. It is so important to be identified as a carer, even caring is not enough, it is so important for carers to be heard and to be taken seriously. I am not saying that there is something that can solve all the challenges that carers face. We need to be practical where we can work towards a better day for many carers.

As carers it is important to join a group that fights hard for carers. It is important to link up with other carers who can exchange ideas and also listen to you. A bigger group helps carry the load that each carer faces. Just by chance, the national charity CarersUK are running a campaign to recruit more carer voices.

This means you could become a member of carers UK for a more powerful way to be heard. Carers UK has many resources to help carers understand their role. It also helps that Carers UK understands that caring can be a difficult role and that they have campaigned for policies to make life easier for carers.

So if you want to counted, included and heard then take that step forward. Click on the following link and be part of something that will not give you a voice. but a way to be included.

Life does not have to be so hard because you care

https://www.carersuk.org/get-involved/join-us/become-a-free-member

Unpaid Carer Discovery – Increasing digital access for carers

Hello carers. Below is an exciting new project from The PSC aimed at improving access to digital information for carers.

The project is led by Southwark Council, but also includes the 4 other London boroughs in the South East. 

The project looks to how a new or improved digital offer can respond to carer needs, and help unpaid carers across SE London get better access and use relevant information, advice and support.

It is important that carers are aware of 3 things, which the project aims to improved.

  • The need to know the term carer, rights and services that are available to unpaid carers.
  • The need to care for their loved ones well as needing to care for themselves as carers and their family
  • Plus the need to plan the care now and in the future

To voice interest in the studies 1:1 interviews, please email heather.mctaggart@thepsc.co.uk and/or shuying.xu@thepsc.co.uk.

Interviews are approximately 45 minutes and your time will be remunerated with a £20 voucher or £20 donation to a charity of your choice.