'I only have a year to live' - Terminally ill woman denied life-extending treatment because of pandemic

There are calls from charities and people living with terminal illnesses in Wales for more support to be given to them in this latest phase of the coronavirus pandemic.

Charities have seen an increase in the number of people with terminal illnesses choosing see out the final days of their lives at home.

They say this requires more funding and government support.

Catrin Edwards, Hospice UK advocacy manager for Wales, said: "Many hospices are already facing a deficit, they're in the red and more will be in that position by the end of this financial year."

Hospice UK said that in 2019, before the pandemic had began, it had to fundraise £33.3m.

It received £5.7m in statutory funding.

Kerry Williams, an artist from Nantlle, was diagnosed with ocular melanoma - a very rare form of eye cancer - in 2016.

Last August, she was told the cancer had spread to her liver and that it was terminal.

Kerry said: "I only have a year to live and without treatment it will be unlikely I'll live longer.

"I was incredibly shocked and devastated to hear this."

Trial treatments that may have helped prolong Kerry's life had to be paused due to the ongoing Coronavirus outbreak.

Kerry Williams spoke to ITV Wales about how 'saddening' it is to live with a terminal illness through a pandemic

Kerry said that living under the current restrictions with a terminal illness is 'incredibly frustrating' and saddening as she cannot do the things she really wants to.

She said: "I'm still alive and I want to live so I'm desperately trying to live at the moment.

"When you're told that you possibly only have a year to live most people would probably think well 'while I'm still able to walk around and feel fairly healthy you would want to go and visit your friends and your family and go to places that you'd like to see before you die', and so it's incredibly frustrating and upsetting not to be able to do the things that I had planned to do."

What is ocular melanoma?

Eye cancer is rare but there are a number of different cancers that can affect the eye.

Melanoma, a cancer that usually develops in the skin, can also affect other parts of the body where melanocyte cells can be found including the eyes.

Around 750 cases of eye cancer are diagnosed in the UK each year.

Symptoms include:

  • Shadows, flashes of light, or wiggly lines in your vision

  • Blurred vision

  • A dark patch in your eye that's getting bigger

  • A lump on your eyelid or in your eye that's increasing in size

Kerry is now aiming to raise enough money to enable her to receive private treatment to prolong her life.

She has started a gofundme page where she is aiming to raise £160,000; she has so far raised just over £54,000.

Marie Curie, the end of life charity, has also called on the Welsh Government to offer more support and to prioritise an End of Life Strategy as a matter of urgency.

A spokeperson for Marie Curie said: "The pandemic has been incredibly difficult for people living with a terminal illness and their loved ones. Many of whom haven’t left their home since March.

"That’s ten months of worry, confusion, loneliness and heartbreakingly tough decisions for families.

"Loved ones are terrified of passing on covid-19 to a terminally ill relative or friend.   

"As we find ourselves back in a lockdown situation, which doesn’t look set to change any time soon, we mustn’t forget these people, and ensure they, and the people caring for them, are getting the care and support they need, whilst acknowledging the part we all have to play in taking personal responsibility to follow Government guidelines to protect everyone."

In response to the charities' calls the Welsh Government said it recognised the important role played by hospices.

A spokesperson said: "Hospices in Wales provide incredibly important services and we recognise the enormous contribution that they make to end of life care and the support they provide to patients, families and carers.

"We have extended the life-span of the end of life care delivery plan and the funding to support its implementation until March 2022.

"We have also allocated £6.3m of emergency funding to support hospices throughout the pandemic which is being used to protect clinical services and strengthen hospice bereavement support."

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