Dying people in NI "failed by lack of Stormont strategy"

By Q Radio news

The Stormont assembly will today debate a motion which centres on the absence of "end of life care" in the Executive's Programme for Government.

The charity Marie Curie says people who are dying  in Northern Ireland are being failed by a lack of strategy from Stormont.

More than ten thousand people have so far signed a petition from the charity demanding issues around death and bereavement are prioritised.

The Stormont assembly will today debate a motion which centres on the absence of "end of life care" in the Executive's Programme for Government.https://t.co/Gz4niektqo

— Q Radio News (@qnewsdesk) April 27, 2021

Spokeswoman Joan McEwan says the Programme for Government is supposed to identify the biggest challenges facing society,..

Since the Covid pandemic began nearly 19,000 people have died from all causes in Northern Ireland, leaving over 170,000 people grieving for their loved ones – a 14% increase

on the 5-year average. Despite this, the current Government strategy doesn’t mention end of life care or bereavement support.

Edward Owens died aged 57 from cancer. His sister, Alison, 55, from Belfast says he was robbed of a good end of life experience.

Alison said: “Death is always going to be hard, but our experience was horrendous. We felt so alone and unsupported – it’s had a devastating impact on the whole family.

“When Edward was admitted to hospital, things went from bad to worse. He was in complete agony and we got passed from pillar to post.

His condition was complex, and because he saw so many doctors and nurses, it was confusing for everyone involved.

I felt like I had to be there all the time to be his voice.

“There was no clear pathway and it made it all so traumatic. We had to seek out help, it wasn’t given to you. We were in desperate need of guidance and direction, but it just wasn’t there.

At a time that should have been about love, compassion and dignity, we were faced
with so much despair”.

After five weeks of battling, Edward was finally admitted to the hospice. By this stage his condition had deteriorated so much he could no longer walk.

Alison added: “The care in the hospice was a complete contrast and the staff were amazing - my only regret is how long it took to get him there.
 
“I feel so angry that end of life care is not part of the current strategy. Death is a part of life, so we need to think about it more. It needs to be prioritised so other families don’t go through what we did.

We were robbed of those final memories with Edward and he was robbed of a
good end of life experience.”

Joan McEwan, Head of Policy and Public Affairs at Marie Curie NI, said:

“The Programme for Government is supposed to identify the biggest challenges facing society, but there is a deafening silence on end of life care and bereavement.

When you consider the enormous levels of bereavement and deaths under the cruellest of circumstances over the past year , the rising demand for palliative care and the growing number of local people dying with chronic diseases like cancer and dementia - the failure to
not mention end of life care in Stormont’s most important strategy document is shocking.

“What is extremely worrying is that Alison’s experience is not unique. We’ve heard from so many families, like hers, that have faced the death of a loved one that has left them full of regret and trauma.

Every single one of us will be affected by death and bereavement and yet people are being left to navigate a complex, complicated system alone at an already devastating time – this has to change.

We know our health service is doing everything it can but it is clearly struggling, so by prioritising end of life at Executive level, we can also support our workforce do their job too.

“For too long, end of life care and bereavement have not been given the attention they deserve at the highest policy level in Northern Ireland, and if they are left out of the Programme for Government, more and more people may miss out on the care and support they need at the end of life.

We’re urging all Stormont parties to support this crucial motion.”

(Marie Curie Nurse Sarah Younge with Head of Policy & Public Affairs at Marie Curie Joan McEwan)