Trustee Tony shares his story as part of Dying Matters Awareness Week

A trustee of St Catherine’s Hospice who has been inspired to campaign for improvements in end of life care following the death of his son is sharing his story as part of a national awareness week designed to break down taboos around death and dying.

Tony Bonser, who is both a trustee and volunteer driver at St Catherine’s as well as a trustee of the National Council for Palliative Care, is driven forward in his work by a desire to validate the death of his son Neil at the age of just 35.

In his role as North West Dying Matters Champion – a position he shares with wife Dorothy, who also volunteers at St Catherine’s – he is a regional representative for the Dying Matters coalition, a group which aims to change public knowledge, attitudes and behaviours towards dying, death and bereavement.

As part of this year’s Dying Matters Awareness Week – which runs from May 12 to 18 – Tony is sharing his experiences to help put the spotlight on the importance of the type of quality end of life care St Catherine’s Hospice delivers, and to encourage more people to speak out and share their wishes for the end of life.

It was Neil’s death in March 2009 – following five years battling cancer which had begun as a sarcoma in his thigh – which first inspired Tony and Dorothy to begin their campaigning work, driven by their own family’s first-hand experiences.

“The medical care Neil received in this time was fantastic – there is no arguing that,” Tony said.

“What did go wrong was the communication between the professionals and us, the family. So many people are scared to say ‘you’re dying’. Of course it’s a very sensitive issue which has to be handled carefully. But what the doctors were saying at that time is certainly not what Neil, Dorothy or I understood.

“It meant a year before he died, we continued to chase cures – when really we should have been enjoying that time. There were things we wanted to do, which we didn’t. Now we say things like ‘Neil would have loved this’ or ‘we would have taken Neil there’ – and they’re things we could have done if we hadn’t been so focused on the cure. Sadly we will never get that time back now, but it’s this experience which drives us on to get people talking and communicating properly about death, dying and wishes for the end of life, particularly those important conversations between professional and patient.

“We need to break down the barriers which exist, and awareness campaigns like Dying Matters Week play an important part in this. The message we’re keen to get across is that although ultimately you can’t avoid death, by talking about it and preparing for it you can have a better one.”

Tony, from Hoghton, who also has a daughter Sam, said the experience of losing a son had impacted massively on their family and influenced greatly their current way of life.

“Our perspective has changed drastically since losing Neil – we now live for today, not yesterday or tomorrow or two weeks down the line,” he said.

“We don’t save for a rainy day – because we’ve already had that rainy day.”

Retired deputy headteacher Tony, who joined St Catherine’s as a trustee last October and also gives his time each week as a volunteer driver bringing patients in for day therapy, said he was delighted to part of the work of the hospice.

“Hospices are wonderful places,” he said.

“They have an ethos and an atmosphere which is unlike anywhere else. At St Catherine’s people have the time, and the expertise, to talk about these sensitive issues. The focus isn’t on how many days someone might have, but on what they can do with this time – a focus we wish we’d had more of with Neil. And there is such attention to detail – St Catherine’s gets the little things right, and it’s all these smaller things which can make such a big difference.

“St Catherine’s is a vital part of the Preston, Chorley and South Ribble community and we’re committed to sharing and spreading the skills, expertise and experience which are embedded here further across the area so that more people can benefit.”

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