A MOTHER whose daughter died aged just 18 has helped charity Anthony Nolan write a bereavement guide--which has now gone on to clinch an award.

Donna Dunn, the mother of Emily Clark who died in 2016, helped produce the Bereavement & Stem Cell Transplant booklet--the first ever bereavement guide written specifically for families of patients who have died following a stem cell transplant.

Emily, who lived in Cwmbran, had been a keen blogger and set up her Remission Possible blog after being diagnosed with Non-Hodgkin (Burkitts) Lymphoma, to support other teenagers in a similar position.

Despite receiving a transplant, one year later she died from breathing difficulties and problems with her lungs.

Anthony Nolan soon identified a gap in bereavement services for families of patients that had gone through stem cell transplants. The charity then asked relatives of patients, including Emily’s family, to edit a booklet which included information on where to go for further help and support.

Ms Dunn said: “There was a parents’ bereavement group in the hospital where Emily died. But unfortunately, because she was 16 when she was diagnosed, she was never part of the children's services. So, I wasn't able to attend the group, despite my best efforts.”

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And Tom Bishop, who is the senior patient services and information manager at Anthony Nolan, added: “We’re delighted to see our Bereavement & Stem Cell Transplant booklet awarded Highly Commended in the BMA Patient Info Awards.

“Bereavement after a transplant is never an easy subject to broach and the best advice will inevitably come from those who understand it best. Without Donna and our other patient families willing to share their story to help others, this booklet would not have made it to print. Thank you.”

The booklet went on to win an accolade at the British Medical Association (BMA) Awards.

The BMA judging panel said of the publication: “This fills an information gap, and from our experience, these are exactly the questions that families ask.

“The resource is a great example of co-production, with input from experienced professionals and patients or families with direct experience of the issues discussed. Although the content was written by a healthcare professional, the experiences of users formed the basis for the information provided (based on in-depth interviews with bereaved families). Users were then involved in reviewing and refining the final output, as well as contributing additional material for the website.

“Information is provided as a series of questions often posed by family members and the responses are clear. This manages to address some very difficult questions which I think would otherwise be extremely challenging. One of the great strengths of this resource is that it doesn’t try to provide definite answers to complex questions.”

Find out more about Anthony Nolan here