Cut put price on the life of a loved one

TREATMENT fight . . . Kate with her late dad Terence

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LAST month, magazine racks were lined with covers promoting breast cancer awareness ­- refreshing to see in an age where people are starting to put their health first.

However, sadly, the same coverage cannot be found for carcinoid neuroendocrine tumours (NET cancer).

Aptly named the "quiet cancer", most people have no symptoms during the early stages and it is easy to miss the diagnosis when it is at its most treatable.

NET cancer is most common in people over 60. Symptoms depend on the location of the tumour, however, these generally include tummy pain, changing of bowel habits, shortness of breath, appetite loss and weight loss.

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My dad Terence O'Brien (70), from Moorside, was diagnosed with NET cancer in May, 2015. This came after several misdiagnoses, including possible asbestosis, in the search for the cause of his chest pain and shortness of breath.

After his diagnosis, not a day went by for him without a trail of anxious and terrifying thoughts, from severe grief over potentially not seeing his four children (aged 19-26) getting married, to regrets over not being excessively vigilant of every cough or sniffle in the last five years.

However, despite news that would understandably turn the strongest of people into a wreck, his spirited nature did not falter. He continued to work at Lase-r-ace, a well-established laser tag business he owned in Derker, supporting his family without government help. All the while he was enduring chemotherapy, and spending up to three weeks out of six in hospital due to infection, until a month before he lost his battle with this terrible disease.

The Pelican Cancer Foundation states that around 2,000 people are diagnosed with NET cancer each year. The five-year survival rate ranges from 80 per cent to 14-26 per cent if it is caught once the cancer has spread (which is when it is most likely to be diagnosed).

The variable course and nature of the disease means that it is essential that clinicians have a range of treatment options available to suit individual patient's needs.

However, my dad was unfortunately one of the 8,000 cancer patients in the UK to have had their lives cut short following a decision to withdraw NHS funding for 25 treatment, which had ran from April, 2011, to July, 2015.

Life-saving medication, which offered a last chance to patients ­- including those with breast cancer, prostate and bowel disease ­- had its funding withdrawn by the NHS under plans to scale back.

Charities accused health officials at the time of taking "a dramatic step backwards", and of destroying a lifeline which prolonged the survival of thousands of cancer sufferers for up to two-and-a-half years.

Following the decision by the Conservatives to cut funding, my father's oncologist wrote to his private healthcare provider in a bid to find financial support for a highly recommended drug, Everolimus.

Everolimus has been praised by the National Institute for Health and Care Excellence (NICE), but is not recommended for cost reasons. This puts NHS England behind many other European and North American countries, where Everolimus is routinely available for NET cancers, and has had a significant impact on life expectancy and quality of later life.

However, repeated requests from the oncologist were denied.

With very little hope (and faith) left, I decided to take things into my own hands by writing to Debbie Abrahams, MP for Oldham East and Saddleworth. She shared my family's concerns on how this funding decision would affect my father's illness, and agreed to act as our representative contacting the Department of Health and the Health Minister, Jeremy Hunt.

We received a response on behalf of Mr Hunt, from George Freeman (Minister for Life Science), who is responsible for the Cancer Drugs Fund. This response did not address the points raised by Mrs Abrahams and myself.

Sadly, my dad passed away two months later.

Within him, the life he led and the mindset he withheld when faced with an unaffordable ransom on his life, I witnessed the character I hope one day to become.

And, although finding the words for this article has been difficult, Dad gave me the best gift I could ever ask for ­- the gift of encouragement and the belief that I can achieve anything.

I hope to have raised awareness of NET cancer, a rare and unknown illness.

I am extremely grateful the funding has now been reintroduced in July, 2016, exactly a year after it was initially cut (even if Everolimus is still not present), so others do not have to go through what my dad and our family did, putting a price on the life of a loved one.