Emily Clark, from Cwmbran, had a type of blood cancer that most patients survive - yet she died after she became too ill to travel to England to access the treatment she needed.
She was diagnosed with non-Hodgkin lymphoma at age 16, after her and her mother had noticed rapid weight gain as well as other symptoms of this blood cancer.
Emily passed away age 18 on Saturday, March 12, 2016.
Consultant haematologist Dr Ceri Bygrave said that care for patient such as Emily exists but not under NHS Wales as it stands.
Emily’s mother Donna says that Emily has left a tremendous legacy, “but there are huge holes in support when it comes to blood cancer.”
“We lost Emily to the side effects of treatments for non-Hodgkin lymphoma, a form of blood cancer,” said Donna.
“Blood cancer is such a complicated disease, and yet I was told when Emily was diagnosed it was a ‘good cancer’ to have.”
“Grief doesn’t get any easier, it just changes, we still miss her and talk about her every day.
“Emily was a grade-A student, who loved science, even in hospital she studied hard and she treated it as an opportunity to talk to the doctors about careers.
“Emily did have treatment in Cardiff, but more specialist treatment was needed.
“This was only available in Bristol but because of complications she became too unwell to travel though she was well enough for the treatment.
“The more we can do to improve the levels of support for people with blood cancer and improve access to new treatments that prolong the quality and length of people’s life is so important.”
Blood Cancer UK has launched an action plan which recommends improvements in the workforce, early diagnosis initiatives, reducing barriers to accessing care and increasing access to treatments.
Speaking specifically on the challenges faced in Wales, Dr Ceri Bygrave, who sat on the Blood Cancer UK Taskforce, said: “The haematology workforce are overstretched and understaffed, with critical staff shortages and increasingly complex treatments leaving people delivering NHS blood cancer care under major pressure.
“This is a particular challenge in Wales where by 2032, 74% of permanent haematology consultants will reach the age of 60 with a shortfall in trainees to replace them.
“The crumbling NHS infrastructure that exists in Wales and a woeful IT infrastructure that lags a long way behind other centres in England are all things that compromise blood cancer patient care on a daily basis.
“To improve blood cancer survival, future NHS workforce plans must include an increase in the number of and support for blood cancer clinical nurse specialists, as well as action to turn around the drop in the number of clinicians doing blood cancer research.”
A Welsh Government spokesperson said: “A record number of staff are working in the NHS and we have continued to invest in the haematology workforce over the past decade.
“This includes a 20% increase in consultant and a 56% increase in specialty and associate specialist doctors.
“We are investing heavily in cancer services, both in terms of new equipment and facilities.
“We have also made cancer one of the NHS’s top planning priorities and have launched a national programme to support recovery in cancer waiting times which is supported by £2m a year for three years.”
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