Cancer campaigner invites politicians to her home in fight for equal access to treatment
North Down mum Melanie Kennedy has asked politicians to explain to her sons 'why it's more important, an Irish language act and other issues, than they having a mum, who's still around.'
Last updated 24th Feb 2018
Melanie was speaking after the Department of Health warned of a delay in reform of individual funding requests for treatment.
The process requires patients here to present a special case for access to cancer drugs, otherwise available in other parts of the UK.
The Bangor woman has been campaigning for the procedure to be scrapped since 2016 and stood as an independent in the 2017 assembly elections, on a health mandate.
Speaking to Downtown Cool FM, she explained how she first learned of the process:
"When my treatment stopped working, I knew that there was a drug that would be beneficial to me but you had to apply for it through what's called the Individual Funding Request.
"My Oncologist did it although he told me before he did it, that I wouldn't get it.
"He more or less explained to me that the process is something called the 'exceptionality clause,' where I would have to respond to the treatment better than 95% of other people with the same condition as myself.
"He didn't have a clue how you would prove that, I certainly didn't have a clue how you would prove that, so when I dug a bit further into this 'exceptionality clause,' it soon became apparent to me that it was grossly unfair.
"A public consultation had been done on it when Jim Wells was Health Minister and that was three years ago in 2015.
"And it was found to be grossly unfair so I started my own campaign around this in 2016."
Melanie said she joined with other campaigners across Northern Ireland to try and change the Department of Health's policy to try and help other cancer patients here:
"I worked with Paula Bradshaw from the Alliance party and Cancer Focus because actually they had been campaigning about this for a long time.
"We were all very excited when the Health Minister met with me and did say she would invite us along to be involved in the consultations on changing the IFR because it did seem to be quite unfair.
"We did this last April."
Alliance MLA Paula Bradshaw wrote to the Department of Health asking for an update on the progress of the consultation process.
In response, the Department of Health said '...a report on this and the proposed final policy, will be presented to an incoming Minister for consideration, subject to available funding. In the interim the existing IFR policy will continue to operate.'
The mum of two said she feels totally let down by the situation here and warned the political stalemate is delaying vital ministerial decisions that could cost lives in Northern Ireland:
"This is literally a life or death issue, I would argue it's bigger than some of the things that is keeping us from having a government.
"The lack of stability in Northern Ireland is having a massive impact on the ordinary people and it's usually the most vulnerable people who suffer, like cancer patients.
"Weekly I'm being contacted at the minute, it's literally weekly, by people who've been turned down by IFR for drugs they need and looking for help.
"I feel helpless and my heart goes out to them all, these are real people with families."
Referring to sticking points such as the Irish Language act which led to the collapse of the recent talks aimed at restoring powersharing, Melanie said there are more important issues in Northern Ireland:
"When we were told that the talks had failed, I publicly invited the DUP or Sinn Fein to come and meet my kids and explain to them why it's more important, some of these other issues than they having a mum who's still around.
"I think they need to realise that this is impacting real people and it is having life or death consequences."
Melanie said her experience has caused her to lose faith in politicians here:
"We can't have a whole country on hold because of the Irish Language Act and legacy issues.
"Politicians are out of touch there's no denying.
"We've a lot of focus on tribal politics and it's not really what anybody wants anymore.
"We're several generations away from the Troubles and nobody wants to go back there but what we're left with is a population who need a fully functioning government.
She called for the political parties here to get back around the negotiating table and address issues such as an outdated cancer strategy urgently:
"I think if they sit down and we have some stability and people having long term, strategic thinking it would be a dramatically different Northern Ireland.
"Half of us will receive a cancer diagnosis in the UK, that includes Northern Ireland.
"So to pretend that a cancer strategy that was implemented over a decade ago, will in any way meet the needs of the growing cancer community now, it's just silly, it's not going to cut it.
"When you have a cancer diagnosis and you have a family, you should not be going to the lengths I'm going to, to...be around and to raise your family."