THE father of a young West Belfast woman, who passed away following a battle with cancer, has hit out following revelations that the Department of Health and its non-departmental bodies do not actively recruit stem cell donors.

Eimear Gooderham (neé Smyth) was diagnosed with stage two Hodgkin’s Lymphoma, a type of blood cancer, in September 2016.

After finding a stem cell donor match, Eimear underwent a transplant in November 2018, but sadly passed away, aged 25, following complications in 2019. 

Throughout her illness, the Coolnasilla woman fought to raise awareness of stem cell donation alongside her family, who established the Eimear’s Wish campaign to continue her work.

In a letter to Eimear’s dad, Seán Smyth, the Department of Health said the North’s main haematology service at Belfast Health and Social Care Trust “is not directly involved” in recruiting potential stem cell donors.

It comes after Mr Smyth, who spearheads the Eimear’s Wish campaign, submitted a Freedom of Information request to enquire about promotion of stem cell donation and a lack of age-appropriate cancer services for young people in the Six Counties. 

In its response, the Department said that it “does not hold any information relating to the number of people in Northern Ireland who have registered their interest in becoming stem cell donors".

A spokesperson said the Trust does not operate its own stem cell registry and instead relies on “a network of national and international” registries which include charities such as the British Bone Marrow Registry, Antony Nolan and DKMS.

The Department further revealed that it does actively promote stem cell donation but said it “would be happy to consider doing so…as further campaigns come online".

Speaking to the Andersonstown News, Mr Smyth said a lack of statutory provision for stem cell donation awareness is forcing families to campaign for publicity.  

“The campaigns raise awareness and that’s great, but how many days and hours did I miss being with Eimear?” he said.

“That’s not fair – it’s not right. You’re dedicating your time to the campaign but, more still, you’re putting yourself in the public domain, opening your heart to show people how devastated you are. It is so wrong.

“I didn’t know until now that they do nothing to promote stem cell donor awareness, and they’ve no intention of doing it either. 

“We’re being recognised as a charity later this month. The last thing I want to do is have a charity, but what option is there if we don’t do it. No family should have to put themselves forward in the public domain to appeal for a donor.”

As part of the Eimear’s Wish campaign, Mr Smyth and his family will deliver a petition with over 3,000 signatures to the Assembly calling for age-appropriate cancer services for young adults.

In 2014, the Assembly agreed to adopt National Institute for Health and Care Excellence (NICE) guidelines for cancer healthcare for children and young adults (16-24 years), which have yet to be implemented. 

The guidelines include a range of measures including psychological and social support during palliative care.

Mr Smyth said Stormont had “failed” both patients and their families.

“They have a cancer strategy that’s going out to the public domain this summer, and age appropriate care for teenagers and young adults will be part of that, but it will be way down the pecking order – it will probably be ten years before it’s done,” he said.

“Nobody is having a pop at our medical providers – the work they do is fantastic and the care Eimear got was fantastic, except for the end-of-life.

"The end-of-life care was horrendous. Every parent you will speak to since Eimear died will tell you the same thing. The end-of-life palliative care is horrendous. 

“They don’t know how to speak to young adults.”