I'd love to hear other peoples experiences

Hi everyone,

I recently lost my father to cancer on Saturday 1st May 2021, after being diagnosed with terminal cancer of the lung with bone metastases in November 2020. He had been misdiagnosed with early-onset osteoarthritis for 8-months before his diagnosis last year, and by that time, it was unfortunately too late. He was placed onto an end-of-life care plan and spent 4-weeks in hospital, followed by 4-months living with me for full-time care, until he eventually was put into a nursing home, and shortly after that moved to hospice to pass away.

Many things went wrong, and I was shocked to see the gaps in end-of-life/palliative care and how much support is missing for terminally ill people and their families.

I’m entirely open to the possibility that perhaps, we were just unlucky. I’m also available to conclude that maybe this was just one of many results of the pandemic and the strain our services are experiencing. But I’ve wondered that maybe, just perhaps, there is a problem or many problems, and perhaps I could help fix just one of them as a legacy for my father.

I wouldn’t want to explore this possibility without speaking to others to see if anything is a theme or reoccurring in multiple people’s experiences. Therefore, I would love to talk to as many people as possible about their experiences supporting someone and advocating for someone with a terminal illness - the good and the bad, of course.

This is just an informal conversation. I want to help to evoke some change in whatever big or small way I can. I’m not sure what that change is yet, but I’m hoping that with the help of others, we can determine one thing that we could make better. It also might just help people who are going through this - to know that they’re not alone.

Please, if you have 10-minutes to spare, please share your experience below. I’d love to hear as much or as little of your story as you are happy to share. Most importantly, I’m looking to hear about what YOU think could make/have made your or your loved one’s experience better, more comfortable, more accessible, or less stressful, and anything significant you think is missing.

Thank you.

Hi @B_eol_experiences

As a new member of the forum I wanted to give you a warm welcome and to extend my condolences on the loss of your father.

While you have asked for comments from fellow carers on here regarding their experiences with loss and palliative care, you may also wish to connect with fellow carers through some of the online services run by Carers UK. Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK - the next online meet up is Monday 17 May (today!! running 3-4pm). This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.

There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Carers UK also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.

Did dad have Legal Expenses Insurance? Check his policies, and if he did, contact the insurance company.
It won’t bring dad back but might stop the same thing happening to someone else.
I did the same when my husband was misdiagnosed, repeatedly. They thought he had arthritis, no one ever checked his blood pressure or heart, he died of a massive heart attack. The PM showed he’d already had one prior to the fatal one, which could and should have been picked up.

Days after the doctors were told they failed him badly, blood pressure machines appeared at the surgeries for the practice concerned.