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

Greenwich Healthwatch BAME carer co-researchers

What is this project about?

Healthwatch Greenwich project wants to uncover experiences and understand
access to carer support, information, and services for Black and Ethnic Minority carers. By sharing your experiences, and speaking to other carers, you can help Healthwatch Greenwich identify the strategies and solutions that will enable Black and Ethnic
Minority carers receive the best possible support.

How will we carry out this project?

Healthwatch Greenwich are excited to partner with Black and Ethnic Minority carers as paid co-researchers in this project. As experts by experience, you’ll bring unique perspectives that are essential to its success.

Who can be a co-researcher?

  • An adult carer: Someone who looks after or gives any
    help or support to a family member, friend or
    neighbour because of long term physical disability,
    mental ill-health or problems related to old age. The
    care they give is unpaid.
  • From a Black or ethnic minority background
    What will co-researchers do?
  • Contribute to the design of the project.
  • Find and speak to other Black and ethnic minority
    carers
  • Contribute to the analysis and presentations of the
    findings.
  • Take part in training and support sessions.
    How much will co-researchers be paid?
    Co-researchers will receive £15/hour. Hourly payment
    includes all additional expenses involved in taking part in this
    project, such as care costs, childcare payments, telephone,
    and travel costs.
    Co-researchers will take part in up to 8 days of involvement
    work spread across a number of days between June and
    September 2023.

How do I apply?
If you’re interested, Healthwatch Greenwich ask you to complete a short
application and have a friendly interview. Please contact Jahan at jahan@healthwatchgreenwich.co.uk or on 07498 851 221.

Diverse Experiences of unpaid Carers Across the caring Trajectory

A new research project is underway at the University of Kent. The research is called Diverse Experiences of unpaid Carers Across the caring Trajectory (DECAT). DECAT is looking for carers to take part in a telephone interview about their experience of being a carer. Currently, Black and Asian carers and carers who are LGBT+ are under-represented within our participants.

The main aim of this study is to understand the factors linked to carers’ satisfaction with social services and quality of life over time.

A questionnaire will be sent to a sample of carers recruited via four local authorities containing questions previously collected in the 2018/19 Personal Social Survey for Adult Carers in England, plus additional questions. The degree to which carers’ satisfaction and quality of life scores differ from scores collected in 2018/19 will be examined. Factors associated with changes will be explored and the scores of subgroups of carers will be compared.

You can contact Dr Diane Fox

Contact

Diane Fox
University of Kent
Personal Social Services Research Unit
Cornwallis Central
Canterbury
Kent
CT2 7NF

Email

d.fox@kent.ac.uk

See poster for details

Promo of Discriminated by Matthew McKenzie

Welcome back fellow carers. Carer Story number 8 is nearly finished. As promised, I am continuing to write carer fictional stories. These stories are based on those caring for someone suffering mental illness.

All audio and video stories are from the book I am working on “Providing Care & Other short stories”. I aim to write 20 short carer stories and add them to an audio book. The quality of the audio stories are increasing each time.

Story number 8 is unfortunately very difficult to listen to. Not because of any quality issues, but due to the nature of the story. As a carer campaigner, I often raise awareness of mental health carers. This time I am focusing on ethnic mental health carers. The story discriminated looks at the challenges a young black woman called Jennifer will face when caring for her brother Darren.

The story also follows Darren’s traumatic journey through the mental health system and the fragmented role of the NHS and the Police.

At the time of the release of this story, you might have heard the police refusing to take mental health calls.

https://www.bbc.co.uk/news/uk-65741824

Once you have watched this story, you will probably understand why. With mental illness increasing at rapid levels, health and social care are struggling to catch up. It is now the family, friends who are caring that will have to step in.

The question remains on if unpaid mental health carers have the resources to cope.

Story number 8 – Discriminated to be release soon.

Listen to the promo below.

The Long Road – Carer poem by Matthew McKenzie

Carers week 2023 approaches. When you start your journey providing unpaid care it can be a long journey. You might start out caring for someone with cancer, mental illness or physical health difficulties. No matter how you see it, you will starting out on a journey.

As an author and poet, I have written extensively on the journey I have travelled. I hae also written about the path where many other unpaid carers will have to walk.

It helps when former or veteran carers help guide others down that road. We need to be aware that not all carer journeys are the same, but it helps if we identify and value each other.

Below is a poem taken from my book “The Poetry book of mental health caring”. You can check out that book at the end of this blog post. I do actually have some podcasts of the poems off my website.

This poem “The Long Road” talks about how a former carer looks back down the road they have travelled. They see new people beginning their caring journey. The stop and tell those carers about that journey. This is a peer carer task, but it is so important vulnerable groups look out for each other.

Watch the poem below.

Preview My carer poetry book on the link below

The Poetry book of mental health caring

Thank you for reading, good luck with your caring journey