Northern Ireland's shameful cancer postcode lottery
Two men tell Stephanie Bell how the postcode lottery almost cost them their lives
Published 31/03/2014 | 11:00
Cancer patients in Northern Ireland are dying while fellow citizens in England are being given life-prolonging and in some cases – life-saving – treatments. The scandal of the biased and unjust postcode lottery approach to cancer treatment in the UK has been revealed by local patients who claim lives are being lost here because of the unfair policy.
Through the Cancer Drugs Fund set up by the government in 2010, a total of 36 treatments have been made available only to people living in England.
The fund, which costs £200m a year, was extended this month for another two years. In total, 42,000 patients in England have benefited.
In Northern Ireland, cancer patients have to apply through an Individual Funding Report for any of the drugs on the list, and statistics show that only one-in-eight who does apply is given access to the drugs. Most are refused due to costs.
Lobbying to have the fund extended to the rest of the UK by the Rare Cancers Foundation has so far proved a success in Scotland and Wales, where plans are afoot to give cancer patients the same access to the drugs.
However, in Northern Ireland the Executive has said that money isn't available to introduce it here. Research by the charity shows that 278 patients would benefit from the fund in Northern Ireland every year, at a cost to government of £5.7m – which equates to £3.20 a year per person in the province.
Also, evidence has shown that patients in England given just months to live in 2010 are still alive today thanks to having access to these drugs.
Andrew Wilson, chief executive of the Rarer Cancers Foundation, says: "The Fund is extending life dramatically in some cases.
"Politicians need to ask themselves whether it is acceptable that cancer patients in Northern Ireland are denied access to life-extending cancer drugs that are available in England.
"The NHS should be there when you need it the most, but the disturbing fact is that for hundreds of patients in Northern Ireland, this is not always the case. Solving this issue is affordable and it is within the power of ministers to do just that."
SDLP health spokesperson Fearghal McKinney is taking up the fight on behalf of patients with the government, and is demanding "immediate action to end discrimination against cancer patients in Northern Ireland and start saving lives".
He says: "It is utterly shameful that cancer patients in Northern Ireland continue to be discriminated against in the supply of life-saving drugs.
"An urgent action plan is needed to improve cancer patients' access to the medicines their clinicians think they need. Clinicians must be empowered to request access to the latest cancer medicines available.
"A life in Northern Ireland is not worth less than a life in England and the minister must take urgent action to address these inequalities."
Today, two local men battling cancer starkly illustrate the discrimination they feel at knowing the cancer drugs fund applies only to England.
'While fighting cancer I'd also to fight legal and medical world'
Brian Withers was given the worst possible news when diagnosed with cancer five years ago – he was told that nothing more could be done for him.
The Belfast man refused to accept the prognosis and sought a second opinion from specialists in England.
In what became a battle to secure what he believed was his best chance for survival, Brian had to raise £20,000 to pay for life-saving treatment refused to him in Northern Ireland.
He also took a case seeking a judicial review of the medical decision not to give him the treatment to the High Court in Belfast, which he lost.
It was a fight which he didn't need on top of his battle with cancer, but because he has two small children, Letitia (13) and Brian junior (3), he felt he had no choice.
The 64-year-old, who is married to Mila, a midwife, and also has three grandchildren and three grown-up children by his first marriage, has no doubt he would not be alive today if he had not raised the funds to pay for pioneering radiotherapy treatment in England. He says: "I was being sent home to die and if a member of my family had not been a doctor and been in a position to advise me, then I wouldn't be here today. I would be dead."
Brian was diagnosed in February 2009 with the chronic heart condition cardiomyopathy.
In April of the same year he started to attend his GP, complaining of problems swallowing.
He was referred to hospital and over a period of some months was given a series of tests, before being told on December 22 he had a cancerous tumour at the bottom of his oesophagus.
In January 2012 his consultant gave him the devastating news that because of his heart condition, he would not survive surgery or treatment and there was nothing that could be done for him.
Brian, a retired financial advisor, says: "Surgery and chemotherapy were my only chance but I was told because of my heart condition I would die on the operating table.
"A relative who is a doctor suspected that I did not have a heart condition, as I didn't appear to have the symptoms.
"He also told me about an alternative treatment which was available in Yorkshire for patients who were not able to have surgery."
Brain immediately arranged an appointment at the Yorkshire Lazer Centre, where he arranged to see Professor Keyvan Moghissi, one of the country's leading cardiothoracic surgeons.
He says: "Professor Moghissi examined me and told me there was nothing wrong with my heart and that because so much time had elapsed since I had first presented symptoms, that I needed surgery urgently.
"He advised me to get my heart re-tested, which I did, and it was confirmed that my heart was healthy and I was told that I must have had a viral from of cardiomyopathy, which clears up."
Brian then had surgery but in May 2011, a PET scan revealed his cancer was back.
"The news was not good," says Brian. "I was told it had spread to my abdomen and my chest and that I was looking at surviving for another six to nine months. I was offered palliative chemotherapy."
Staring death in the face for a second time, again Brian sought a second opinion at the London Oncology Clinic in Harley Street.
He met with Dr Andrew Gaya, who is a specialist in cancers of the oesophagus, stomach, pancreas and liver.
He recommended Stereotactic Body Radiotherapy (SBRT), which is delivered using a specialist machine called the Cyberknife to target tumours. Brian says: "It's a very intensive treatment and Dr Gaya advised me to go ahead with the chemotherapy and come back in three months after a PET scan, when I would be ready for the radiotherapy.
"My oncologist in Northern Ireland, however, refused it on the grounds that there was no clinical evidence to indicate it would help me."
Instead, Brian had to pay £1,600 for two PET scans to help the London clinic to decide if he needed the intensive radiotherapy.
While the chemo had done a superb job in shrinking the tumours, Dr Gaya suggested that he should receive the Cyberknife treatment to eradicate the remaining cancer cells.
With no approval from the NHS in Northern Ireland, Brian had to raise £20,000 to pay for the treatment in England, which he received over three days in November 2011.
He says: "It did its work and eradicated the cancer in my abdomen, which was the most dangerous. My main consultant in Belfast agreed that if it hadn't been for Dr Gaya and the Cyber Knife treatment, I would not be here today."
Six months later, Brian's cancer flared up again, although not in his abdomen where he had received the radiotherapy. Again he was offered chemotherapy and this time, decided to go to court to challenge the decision not to allow him Cyberknife treatment.
But Mr Justice Treacy held that the opinion of an expert panel should not be interfered with and refused Brian leave to seek a judicial review.
Brian finished a course of chemotherapy in December and this week had a PET scan and is now waiting for the results.
He says: "The situation is that because I was lucky to have a doctor in the family, I knew there were other treatments available, but how many people out there don't know that? People are not being offered these treatments and they are not routinely available to clinicians.
"If it hadn't been for Dr Gaya I wouldn't be alive today. While fighting cancer, I had to fight the medical world and the legal world.
"It's a postcode lottery. I pay the same tax and national insurance as a man living in Somerset, yet I'm not entitled to one of these 36 drugs which he can get because of where he lives.
"I don't know what the future holds for me.
"I might need more surgery and I might benefit for more Cyberknife treatment, but I don't have the reassurance of knowing I will get it."
A spokesperson for the Belfast Trust said: "We are unable to discuss an individual patient. However, we have been in regular contact with Mr Withers and he continues to receive treatment for his condition. We would ask Mr Withers to contact the Trust if he has any concerns."
'The system should work for you, not against you'
Allister Murphy was a fit, athletic rugby player when in 2008, during a visit to his GP, he was given a routine blood test for prostate cancer because of his age.
Just a month later, still feeling healthy and well and with no symptoms, Allister was stunned to be told that he had an advanced form of the disease, which had spread through his bones and which was incurable.
Allister was given the devastating prognosis that he had between just two and three years left to live.
He says: "When the consultant said it was incurable, I asked what exactly that meant and he just told me I was going to die.
"It's hard to put into words how that feels. Your whole world comes crashing down. It's like one minute I am this athletic, fit person and then suddenly I'm being told, 'Sorry but it's all over'."
Allister (57) a retired IT engineer from Newtownabbey, was referred to Professor Joe O'Sullivan, a consultant clinical oncologist and leading UK researcher in prostate cancer at Belfast City Hospital.
The most common cancer in men, the statistics on survival of prostate cancer are grim, with just 28% surviving beyond five years.
Allister, who is married to Laura, is continuing to fight the disease six years after his diagnosis and just this week started his latest course of chemotherapy.
He believes he has survived because of experimental drugs and clinical trials which he was able to participate in thanks to Professor O'Sullivan.
Ironically, one of the drugs which he help to trial and which Northern Ireland led the world in helping to develop was just last week turned down by NICE (National Institute for Health and Care Excellence) for a license but was added to the Cancer Drugs Fund in England.
Allister says: "It is called Radium 123 and it is rated as the finest and most exciting new drug in the world for treating prostate cancer. It works by injection and is an internal radiotherapy that goes round the body and locates the tumours and attacks them.
"I got it as part of the trial and the irony is that even though I helped in the development of it, I wouldn't be entitled to it now.
"While it has been turned down for license it has been put on the list of the Cancer Drugs Fund – something which is happening more and more often.
"It's like a back door for people to access drugs that are not licensed, but only applies if you live in England."
Like most people, Allister is disgusted that a drugs fund exists for cancer patients in England but not the rest of the UK.
"We are all UK taxpayers, so why do you have to live in England to get access to this fund?" he says.
"I know people who have moved house to England and others who have rented there just to get access to drugs.
"It's frustrating, infuriating and unfair.
"When you are dying of cancer the last thing you want is to have to fight the system – it should be working for you not against you.
"It's not as if we are talking huge sums of money."