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Mother raises awareness about organ and tissue donation at hospice conference

Author: Suzanne Stevenson
16 November 2016

Talking about organ donation with family members is an important conversation to have.

A mother whose teenage son agreed to donate his organs and tissues before his unexpected death has spoken about the importance of discussing end-of-life wishes with loved ones at a conference held by St Catherine’s Hospice. 

Lisa Grant, from Preston said the heartbreak of losing her beloved son Jordan, when he suffered a cardiac arrest in February 2012 aged just 17, for her and husband John was immense, describing it as the “biggest shock of our lives”.

However, they had gained some comfort from knowing that Jordan’s admirable forethought to donate his organs and tissues has helped save the lives of others.

She was speaking at a conference at St Catherine’s Hospice in Lostock Hall, Lancashire - called ‘There’s something I’ve been dying to tell you’.

The event was aimed at raising awareness of the need for people to open up about their end-of-life wishes to their family and healthcare professionals.

Experts from St Catherine’s talked about ways to ‘start the conversation’ in a dedicated workshop. Guest speakers included Sarah Russell, Head of Research and Clinical Innovation at Hospice UK.

Lisa, a former nurse of St Catherine’s Hospice who now works at the Royal Preston Hospital, recalled the day of the tragic death of her beloved son, who was a sports journalist who was looking at studying English at Oxford.

“He’d just got a job at the new Waitrose at the Capitol Centre in Preston, so he and his dad set off on the Saturday morning for his first shift. But the next three minutes felt like a lifetime. My husband came running into the house, screaming at me to call the police, saying that our son was in the car having a seizure.

“We gave him CPR in our cul-de-sac, but when the paramedics arrived, there was no life left. What, why or how it had happened, nobody knew.”

When they arrived at the hospital things were chaotic but they met a bereavement nurse who was very supportive to the family.

“After a few discussions she asked if we’d thought about tissue donation, and I said we had because Jordan had ticked the box to go on the donor register when he applied for a driving licence. We had talked about it and he said that was what he wanted.

“He was a multiple donor, donating his eyes, spleen, tendons, skin, bone and heart valves. He had signed the register and we honoured his wishes.

Addressing the conference, Lisa added: “I would really urge you to please have those conversations with your patients, and with your family round the dinner table.

“We lost a beautiful young man, but the positives it has brought to my family knowing what he’s done for other families, words can’t express it.”

The doctors and nurses at St Catherine’s Hospice have been opening up conversations about tissue donations with patients and families. Between October 2014 and 2015, 14 cornea donations had been made through the hospice.

Helen Bradley, from the bereavement and donation team at Lancashire Teaching Hospitals NHS Foundation Trust, explained that whereas organ donation can usually only take place at a hospital, tissue donations can be made no matter where someone has died.

“Firstly, the family needs to know that a person has consented to organ and tissue donation, and it’s then a case of them telling the healthcare professionals, or being asked by the doctors or nurses. Some opportunities are missed if they are not asked, because it’s not often that a family will bring it up first.

“All we’re doing is offering them a choice, and we shouldn’t be denying them of that choice just because we forget to ask, or because we don’t want to broach the subject.

“Only those involved know if it is right for them and if it’s the right time, but it does need to be asked, and quickly.

“One donor can help 52 people – it really does save and enhance lives.”

Another topic which was covered at the day-long conference was the subject of people making a record of their end-of-life wishes.

An end-of-life plan called the ‘one page profile’, developed by former St Catherine’s patient Max Neill, inspired the charity to share learning from his experience with health professionals from a wide range of disciplines such as palliative care, GPs, district nurses and care homes.

The hashtag - #MaxEOLC – representing Max’s contribution to End Of Life Care enables people from across the country to join in conversations online about advance care planning and helps raise awareness about these important issues.

Commenting on the event, Lynn Kelly, Director of Knowledge Exchange Services at St Catherine’s said. “The conference was a huge success and the important subjects covered helped to give new meaning to end-of-life care.

“The experiences shared by Lisa about organ and tissue donation, and a former Day Therapy patient of St Catherine’s who spoke about developing her own one-page profile, particularly made an impact.”

For more information visit www.stcatherines.co.uk

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