0:00:02 > 0:00:04Hundreds of cancer patients in Northern Ireland cannot get
0:00:04 > 0:00:06drugs that are free in England.
0:00:06 > 0:00:11It is cruel. It is inhuman and wrong. It is fundamentally wrong.
0:00:13 > 0:00:15I would love to have the drug.
0:00:15 > 0:00:18I would love to have it for myself and for other people.
0:00:18 > 0:00:22But I have to accept that in my time I might not get it.
0:00:24 > 0:00:27Tonight, we investigate why it is one rule here
0:00:27 > 0:00:30and another rule in England.
0:00:51 > 0:00:5658-year-old Allister Murphy from Newtownabbey is ill with cancer.
0:01:00 > 0:01:04For the last six years, he has been fighting to stay alive.
0:01:06 > 0:01:12I was diagnosed in February 2008, with advanced metastatic prostate cancer -
0:01:12 > 0:01:18prostate cancer which has escaped the prostate and gone into my bones.
0:01:18 > 0:01:23It's spread throughout my body, which means it's incurable and ultimately terminal.
0:01:24 > 0:01:28Allister had no real symptoms, so for him
0:01:28 > 0:01:32and his wife, Laura, the diagnosis came as a shock.
0:01:32 > 0:01:38It's like a bombshell, almost like an out-of-body experience.
0:01:38 > 0:01:41You hear it but you don't believe it.
0:01:41 > 0:01:46The old things about denial and shock, fear, all those things are true. My wife was on the floor.
0:01:46 > 0:01:50I was just shell-shocked, literally.
0:01:50 > 0:01:54I mean, I think turned around
0:01:54 > 0:01:58to the urologist and said, "How long?"
0:01:58 > 0:02:04Prognosis was around about two years, maybe three, tops.
0:02:04 > 0:02:08Six years later, a succession of different life-extending drugs
0:02:08 > 0:02:11has delayed the growth of the cancer.
0:02:17 > 0:02:18In January last year,
0:02:18 > 0:02:2372-year-old Vera Saunderson from Carrickfergus was diagnosed with liver cancer,
0:02:23 > 0:02:29which spread to her bowel. She was successfully treated for this.
0:02:29 > 0:02:31But the cancer returned.
0:02:31 > 0:02:37By March this year, I developed a pain in my back and it got worse and worse.
0:02:37 > 0:02:40It was a very severe pain and they discovered it was a tumour
0:02:40 > 0:02:44in the third lumber in my spine.
0:02:44 > 0:02:47But also there was one in or near my lung.
0:02:47 > 0:02:52When your oncologist phoned you, what did he say about the prognosis?
0:02:52 > 0:02:53It's incurable.
0:02:53 > 0:02:55They were very straight with me.
0:02:55 > 0:02:58They told me I have incurable cancer.
0:02:58 > 0:03:02They didn't say anything about life expectancy and I didn't ask.
0:03:02 > 0:03:06I don't particularly want to know that.
0:03:06 > 0:03:10I am very pragmatic and I sort of accepted it.
0:03:10 > 0:03:13I think I had guessed that it wasn't good news.
0:03:19 > 0:03:22There have been huge strides in cancer research
0:03:22 > 0:03:25and care over the last two decades.
0:03:25 > 0:03:30Treatment has become very specific to an individual's particular condition.
0:03:30 > 0:03:35Even with terminal cancer, people are living longer
0:03:35 > 0:03:38by finding drugs that delay the growth of tumours.
0:03:38 > 0:03:41Since Allister was first diagnosed,
0:03:41 > 0:03:44several new drugs have been developed
0:03:44 > 0:03:48which have helped him live a lot longer than expected.
0:03:48 > 0:03:52Whilst you are surviving with this drug, the research scientists are developing
0:03:52 > 0:03:57new drugs, so the new stepping stone could be appearing very soon.
0:03:57 > 0:04:02And that has been the case for me and others in a similar position.
0:04:04 > 0:04:08'Today, Allister is on his way to the cancer centre in Belfast.'
0:04:11 > 0:04:13Tell me about the treatment you've been getting,
0:04:13 > 0:04:16where you've got to with your treatment.
0:04:16 > 0:04:20Currently, I'm on my second batch of chemotherapy, which is,
0:04:20 > 0:04:22in itself, quite unusual.
0:04:22 > 0:04:26Very few people get to a second batch.
0:04:26 > 0:04:31- How is the chemo helping you, Allister?- The chemo's not a cure.
0:04:31 > 0:04:35What it's doing is it's buying me some extra time,
0:04:35 > 0:04:39for these other drugs which are in development.
0:04:39 > 0:04:41The longer the chemo works,
0:04:41 > 0:04:45the more time there is for these other drugs to come to market.
0:04:45 > 0:04:49But there's no doubt that my luck is running out.
0:04:49 > 0:04:52There is now another new drug that could give him a chance
0:04:52 > 0:04:57to keep extending his life but it's not available here right now.
0:04:57 > 0:05:02- Hello, Joe.- Allister, good to see you. This way.
0:05:03 > 0:05:06So, Joe, when we get to the end of this current ten sessions of chemo,
0:05:06 > 0:05:09obviously I need a break.
0:05:09 > 0:05:13But what I really want is access to this new drug, enzalutamide.
0:05:13 > 0:05:18I'm hearing great things but I'm concerned about its availability.
0:05:18 > 0:05:22I hope by the time you have finished chemotherapy, we will have access to it.
0:05:22 > 0:05:24It'll be down to funding, basically?
0:05:24 > 0:05:30Yes, I think we are definitely lagging behind in the time frame to get this drug,
0:05:30 > 0:05:32there's no doubt about that.
0:05:32 > 0:05:35Thankfully, at the moment the chemotherapy is going well, you're responding to it,
0:05:35 > 0:05:39but if it wasn't and you needed something right now, we couldn't give you that drug.
0:05:39 > 0:05:41It is frustrating for me, as an oncologist,
0:05:41 > 0:05:44that if you did need it, I couldn't give it to you,
0:05:44 > 0:05:48If I was working in England, no problem.
0:05:51 > 0:05:53All drugs in the UK are approved for use by NICE -
0:05:53 > 0:05:57the National Institute of Health and Care Excellence.
0:05:57 > 0:06:04It makes difficult judgments as to whether or not the NHS can afford
0:06:04 > 0:06:09certain new and expensive drugs from the pharmaceutical companies.
0:06:09 > 0:06:12The companies are charging tens of thousands of pounds
0:06:12 > 0:06:14for some cancer drugs -
0:06:14 > 0:06:17that is just for one person's treatment.
0:06:17 > 0:06:20They want to claw back the cost of developing the drug,
0:06:20 > 0:06:22and make a profit.
0:06:22 > 0:06:27NICE was developed by the last Labour administration in 1999,
0:06:27 > 0:06:33and it was brought in to get rid of a problem that existed with
0:06:33 > 0:06:36so-called postcode prescribing across the UK.
0:06:36 > 0:06:42What NICE allowed was a system whereby everyone had equal
0:06:42 > 0:06:46assess to the same treatment across the UK.
0:06:46 > 0:06:51But that equal access all changed in 2011.
0:06:51 > 0:06:57The Westminster government set up a £200 million Cancer Drugs Fund in England.
0:06:57 > 0:06:59This was after a public outcry,
0:06:59 > 0:07:03that NICE was not approving some newer drugs that could extend
0:07:03 > 0:07:06patients' lives, and reduce suffering,
0:07:06 > 0:07:09because they cost too much.
0:07:09 > 0:07:13But our devolved administration at Stormont did not set up
0:07:13 > 0:07:15a fund for Northern Ireland.
0:07:15 > 0:07:18So, at present, around 40 different drug treatments are not
0:07:18 > 0:07:20available here.
0:07:20 > 0:07:24We have gone back to the situation roughly we were in before 1999
0:07:24 > 0:07:29where there are some patients within the UK who have access to cancer
0:07:29 > 0:07:33drugs that other parts of the UK are unable to access.
0:07:33 > 0:07:37And whilst personally I believe
0:07:37 > 0:07:41that the NICE process was fallible,
0:07:41 > 0:07:48and at times the decisions were not correct, it provided an equal
0:07:48 > 0:07:54access to drugs for all patients in the UK that the Cancer Drugs Fund
0:07:54 > 0:07:56in England has undermined.
0:07:56 > 0:08:01In England, anyone who wants to try one of the new drugs can
0:08:01 > 0:08:06apply to the Cancer Drugs Fund and is likely to get the treatment,
0:08:06 > 0:08:10whereas here, your chance of getting a drug that has not been
0:08:10 > 0:08:12approved by NICE is very small.
0:08:12 > 0:08:13Patients have to prove
0:08:13 > 0:08:17they would respond exceptionally well to treatment.
0:08:17 > 0:08:19While this is under review,
0:08:19 > 0:08:22the result is that currently only 5% get the new drugs here.
0:08:22 > 0:08:26Every year, this leaves hundreds of cancer sufferers
0:08:26 > 0:08:28here in Northern Ireland
0:08:28 > 0:08:31unable to get the drugs which just might extend their lives.
0:08:31 > 0:08:35It is estimated it would cost between £5 million
0:08:35 > 0:08:39and £7 million to create a Cancer Drugs Fund.
0:08:39 > 0:08:42The financial pressure on cancer services is something
0:08:42 > 0:08:44Allister now knows all about.
0:08:44 > 0:08:48The drug he wants has now been approved by NICE,
0:08:48 > 0:08:53and could be available here in six months' time. But it is costly.
0:08:53 > 0:08:56£25,000 for a course of tablets,
0:08:56 > 0:08:59and it is up to individual health trusts
0:08:59 > 0:09:01to judge if they can afford this.
0:09:01 > 0:09:04In England, if they won't pay,
0:09:04 > 0:09:08patients can still get this drug through the Cancer Drugs Fund.
0:09:08 > 0:09:11The existence of the new drugs are like a man crawling through
0:09:11 > 0:09:14the desert, dying of thirst,
0:09:14 > 0:09:17and someone hands him a glass of water, and then all of a sudden,
0:09:17 > 0:09:19he says, "Oops, sorry, I didn't realise you're not English,"
0:09:19 > 0:09:22and takes it away.
0:09:22 > 0:09:24It's cruel. It is so cruel
0:09:24 > 0:09:28to see men and women in Northern Ireland dying unnecessarily, or
0:09:28 > 0:09:33at least not having the opportunity to have their lives extended.
0:09:33 > 0:09:38It's inhuman and it's wrong. It's fundamentally wrong.
0:09:40 > 0:09:42When Vera, along with her daughter, Lyn,
0:09:42 > 0:09:45went to see her oncologist, he also
0:09:45 > 0:09:48informed them that a drug existed in England
0:09:48 > 0:09:50that may extend her life...
0:09:50 > 0:09:52at a price.
0:09:54 > 0:09:57The drug is called sorafenib.
0:09:57 > 0:09:59NICE says it doesn't provide
0:09:59 > 0:10:02enough benefit to patients to justify its high cost.
0:10:02 > 0:10:06But again it is available in England through the Cancer Drugs Fund.
0:10:07 > 0:10:11It could potentially stop the growth of Vera's cancer
0:10:11 > 0:10:13and alleviate her pain.
0:10:13 > 0:10:17But she, herself, would have to pay £3,000 a month -
0:10:17 > 0:10:21that's £36,000 a year.
0:10:21 > 0:10:26When you own your own house, you have equity, you have a wee bit of savings.
0:10:26 > 0:10:29You go through that, I've done all that, I've done the sums.
0:10:29 > 0:10:33I have savings and I could use them.
0:10:33 > 0:10:36I know my savings won't last for ever.
0:10:36 > 0:10:40I'm not prepared to sell the roof over my head to fund a drug
0:10:40 > 0:10:42which may or may not work.
0:10:44 > 0:10:47I'm not sure what would happen if you could afford to buy
0:10:47 > 0:10:52the drug for a certain period of time and then you had to stop.
0:10:52 > 0:10:56I'm not sure what would happen then. Would it be withdrawn from you?
0:10:56 > 0:10:57What would happen?
0:10:57 > 0:10:59I just don't know at that stage what would happen.
0:10:59 > 0:11:03In fact, once Vera couldn't afford to pay for the drug,
0:11:03 > 0:11:05the treatment would stop.
0:11:05 > 0:11:08Because Lyn lives in England, she and her mum have discussed
0:11:08 > 0:11:12Vera moving there to get the drug on the NHS.
0:11:12 > 0:11:16I'd have liked to have done anything to prolong her life,
0:11:16 > 0:11:18but I also have to consider what her needs are,
0:11:18 > 0:11:22and this is her home here, and she doesn't want to leave her home.
0:11:22 > 0:11:26It makes me very upset that she can't have something that
0:11:26 > 0:11:29a friend's mum could have in England.
0:11:29 > 0:11:31That makes me very upset.
0:11:31 > 0:11:36But it's clear that Vera doesn't want to move to England.
0:11:36 > 0:11:38I don't particularly want to do that.
0:11:38 > 0:11:42I don't want to stay away from home for months at a time.
0:11:42 > 0:11:48I want the best of both worlds, but I'm not pushing for this drug
0:11:48 > 0:11:52simply because I think at my age, and my time of life,
0:11:52 > 0:11:55there are probably people on the list who need it more me.
0:11:55 > 0:11:59The charity Cancer Focus NI is running a campaign for equal
0:11:59 > 0:12:02access to the newer life-extending cancer drugs for people
0:12:02 > 0:12:06in Northern Ireland.
0:12:06 > 0:12:10Chief Executive Roisin Foster says that since June,
0:12:10 > 0:12:14more than 20,000 people have signed a petition.
0:12:14 > 0:12:16I think we need to keep the focus
0:12:16 > 0:12:20on the cancer patients in this discussion.
0:12:20 > 0:12:24They are the people suffering because they cannot get access to drugs
0:12:24 > 0:12:26that other patients can in other parts of the UK.
0:12:26 > 0:12:32Cancer Focus says people desperate to stay alive are taking drastic action.
0:12:32 > 0:12:34Despite being very ill,
0:12:34 > 0:12:38some are actually moving to England to access drugs.
0:12:38 > 0:12:42We have met with people who are self-funding, who are working through
0:12:42 > 0:12:48their private pension plan money, who will leave loved ones with no money -
0:12:48 > 0:12:55their wives, their children - but they feel they have no option.
0:12:55 > 0:12:59They are paying £2,000, £3,000 a week, and yet if they
0:12:59 > 0:13:03didn't live in Belfast, and lived in Bradford, it would be available to them.
0:13:03 > 0:13:08They have paid the same taxes, the same National Insurance.
0:13:08 > 0:13:14Cancer Focus is due to take its campaign for equal access to the drugs to Stormont next week.
0:13:14 > 0:13:19Since the Cancer Drugs Fund was set up in England, MLAs have,
0:13:19 > 0:13:25on a number of occasions, debated if we should have a similar arrangement here.
0:13:25 > 0:13:28In 2011, there was
0:13:28 > 0:13:31an agreement between the parties that a fund should be created.
0:13:31 > 0:13:36But three years later, they have still not found the money to deliver on that pledge.
0:13:36 > 0:13:41So why doesn't Stormont create a Cancer Drugs Fund?
0:13:41 > 0:13:45Essentially, it has put other priorities first.
0:13:45 > 0:13:50There is, for instance, an option to raise money required for a Cancer Drugs Fund by reintroducing
0:13:50 > 0:13:53a prescription charge.
0:13:53 > 0:13:56But the Stormont Executive has failed to agree this.
0:13:56 > 0:14:00Some pharmaceutical companies also offer financial assistance
0:14:00 > 0:14:03for the next five years to help purchase
0:14:03 > 0:14:05the newer medicines.
0:14:05 > 0:14:09But the Department of Health has rejected this deal, too, because it
0:14:09 > 0:14:11says it would not cover the cost
0:14:11 > 0:14:14of a drugs fund now or in the future.
0:14:14 > 0:14:19One of those who in the past called for equal access is Jim Wells.
0:14:19 > 0:14:22If I am cancer sufferer in Ballymena, why should I be
0:14:22 > 0:14:26treated less favourably than if I live in Basingstoke?
0:14:26 > 0:14:28Surely we're all part of the United Kingdom,
0:14:28 > 0:14:32we all pay the same taxes and are therefore entitled to the same drug treatment.
0:14:32 > 0:14:35Jim Wells is the new Health Minister.
0:14:35 > 0:14:38In his first interview since taking up the post,
0:14:38 > 0:14:41he seems to have changed his tune.
0:14:41 > 0:14:43If I provide £30,000 for a drug
0:14:43 > 0:14:47that will give someone an extra three months of life,
0:14:47 > 0:14:50that's the equivalent to two heart bypasses,
0:14:50 > 0:14:52which could give someone an extra 25 years of life.
0:14:52 > 0:14:57That's the terribly difficult wisdom of some decisions that I have to make.
0:14:58 > 0:15:02Jim Wells' predecessor, Edwin Poots, has on a number of occasions
0:15:02 > 0:15:04suggested introducing
0:15:04 > 0:15:10prescription charges to pay for a drugs fund to treat cancer and other illnesses.
0:15:10 > 0:15:14We can reveal that in recent weeks he was preparing a proposal to
0:15:14 > 0:15:19charge £3 per prescription, but the idea divides the two main parties.
0:15:21 > 0:15:25I think it is fundamentally a good idea in looking at this but the reality is
0:15:25 > 0:15:29certain members of the Executives say they will not have it.
0:15:29 > 0:15:32But at the moment, that proposal, which would bring a lot of money into the system,
0:15:32 > 0:15:34really is getting nowhere.
0:15:34 > 0:15:38I still think it's ridiculous that somebody like myself gets free prescriptions, I think that's wrong.
0:15:38 > 0:15:42We have to keep looking at this but we have to get executive support.
0:15:42 > 0:15:46The prescription charge will not be the solution,
0:15:46 > 0:15:47to simply tax the sick.
0:15:47 > 0:15:53We are opposed to prescription charges and that is loud and clear.
0:15:56 > 0:16:00In Northern Ireland, we have a high dependency on the health service.
0:16:00 > 0:16:03We have more people on sickness benefits than anywhere
0:16:03 > 0:16:05else in the UK.
0:16:05 > 0:16:10Also, significantly, we have the fastest-growing elderly population,
0:16:10 > 0:16:13and they use the health service most.
0:16:15 > 0:16:21This puts a financial strain on all services across health and social care,
0:16:21 > 0:16:23not least cancer services.
0:16:26 > 0:16:29The rate of people getting cancer is growing fast,
0:16:29 > 0:16:31because people are living longer.
0:16:32 > 0:16:36It is estimated one in three of us will get the disease.
0:16:36 > 0:16:41In Northern Ireland, by 2030, cancer rates are expected to have
0:16:41 > 0:16:46risen by more than 100% since the start of the century.
0:16:48 > 0:16:51While Martin Eatock wants patients here to have access
0:16:51 > 0:16:57to the cancer drugs available in England, he also says the harsh reality is other
0:16:57 > 0:17:01areas of cancer care need money also.
0:17:01 > 0:17:07It is important to stress that these are not life-saving drugs.
0:17:07 > 0:17:09They are life-extending drugs,
0:17:09 > 0:17:14and often the extension in life with these drugs is small.
0:17:14 > 0:17:20It's probably fair to say that in the scheme of cancer services
0:17:20 > 0:17:26as a whole, and I'm talking about the whole range of treatments, including surgery, radiotherapy,
0:17:26 > 0:17:30and then even thinking beyond somebody who has a diagnosis
0:17:30 > 0:17:34of cancer, spending on cancer prevention and early diagnosis...
0:17:34 > 0:17:36um, the...
0:17:38 > 0:17:39..the spend on cancer drugs,
0:17:39 > 0:17:44or the additional spend on a Cancer Drugs Fund, has to be
0:17:44 > 0:17:49viewed as a much lower priority than properly organising cancer services.
0:17:51 > 0:17:56But for those suffering from cancer, like Allister, each month is precious.
0:17:56 > 0:17:58It's a great misconception when they say,
0:17:58 > 0:18:03"What's the point of a drug that only extends life by four weeks?"
0:18:03 > 0:18:08They think you will get four weeks and die in agony. That is nonsense.
0:18:08 > 0:18:11It could be four weeks, it could be four years, it's variable
0:18:11 > 0:18:13from people to people.
0:18:13 > 0:18:15You don't just set your watch and go,
0:18:15 > 0:18:18"I must die on Tuesday at two o'clock."
0:18:18 > 0:18:19It doesn't work like that.
0:18:19 > 0:18:22You could survive many, many months or many years.
0:18:22 > 0:18:26It felt cold to be talking about someone's life as a business case.
0:18:26 > 0:18:30Something felt very wrong about it, putting a price on somebody's life.
0:18:30 > 0:18:35You know, was it... Talking about the benefit of this drug,
0:18:35 > 0:18:38could prolong on average three months of somebody's life.
0:18:38 > 0:18:41I thought, "Three months of prolonging somebody's life,
0:18:41 > 0:18:44"when it's your mum, I'll take that."
0:18:45 > 0:18:47Difficult financial
0:18:47 > 0:18:52and ethical decisions will have to be taken about what to spend a limited budget on.
0:18:52 > 0:18:56We're facing a huge pressure in terms of the projected increase
0:18:56 > 0:18:58in the number of patients diagnosed
0:18:58 > 0:19:02with cancer and so there is a greater pressure on the service
0:19:02 > 0:19:08because more treatment is given to a greater number of patients.
0:19:08 > 0:19:12If we don't start addressing that problem now, we will have a cancer
0:19:12 > 0:19:20service in its entirety that is not fit for purpose in 10 to 15 years.
0:19:23 > 0:19:28Already, waiting times for patients are causing alarm.
0:19:28 > 0:19:33It should take no more than 62 days between anyone seeing their GP
0:19:33 > 0:19:36with possible cancer
0:19:36 > 0:19:38to their first definitive cancer treatment.
0:19:38 > 0:19:43The health service has a target of achieving this in 95% of cases,
0:19:43 > 0:19:47but in July this year, it was failing to do this.
0:19:47 > 0:19:53We can reveal in that month the target was met in only 71% of cases.
0:19:53 > 0:19:57The time from symptoms to diagnosis is very crucial.
0:19:57 > 0:20:01Essentially, for almost all cancers, the earlier you diagnose it,
0:20:01 > 0:20:03the better the outcome.
0:20:03 > 0:20:06And the more likely the patient is to survive their cancer.
0:20:06 > 0:20:10If there's slippage there, we will see slippage in survival rates, I'm sure about that.
0:20:10 > 0:20:13So any step back from that is going to be a disaster.
0:20:13 > 0:20:17Until recently, John Compton was the chief executive
0:20:17 > 0:20:20of the Health and Social Care Board.
0:20:21 > 0:20:26Cancer waiting times are progressively slipping, how worried are you about this?
0:20:26 > 0:20:30Clearly concerned if there's any movement in cancer waiting times,
0:20:30 > 0:20:32because they do get a priority
0:20:32 > 0:20:34and people are very, very anxious about it
0:20:34 > 0:20:37inside the system because people who work in the system
0:20:37 > 0:20:40know the potential implications of all of this.
0:20:40 > 0:20:42I don't think we're at the tipping point yet,
0:20:42 > 0:20:46but having discussed the issues, particularly the increasing incidence of cancer
0:20:46 > 0:20:50and the current budget crisis, we may not be too far away from that.
0:20:55 > 0:20:59One area where waiting times have got worse in the last year is
0:20:59 > 0:21:01urgent breast cancer cases.
0:21:01 > 0:21:04Spotlight has discovered there has recently been
0:21:04 > 0:21:07a critical deterioration in referral times.
0:21:07 > 0:21:12All referrals should take place within 14 days.
0:21:14 > 0:21:20But, in July, this was only achieved in 46% of cases.
0:21:20 > 0:21:23How did that happen, is it about money?
0:21:23 > 0:21:26I'd only been in the position six days, and that's one of the issues.
0:21:26 > 0:21:29I want to establish why that did happen, it's very serious.
0:21:29 > 0:21:31But also, I'm reassured that when it was identified,
0:21:31 > 0:21:34the trusts acted immediately.
0:21:34 > 0:21:40The Department of Health also says it is now carrying out a fundamental review of services.
0:21:40 > 0:21:46In this financial year, the Department says it's £140 million short of what it needs
0:21:46 > 0:21:48to meet demand.
0:21:48 > 0:21:52The Stormont Executive has ring-fenced health spending from any cuts.
0:21:52 > 0:21:54In the last three years,
0:21:54 > 0:21:57it has allocated small increases in funds.
0:21:57 > 0:21:59But after inflation and other factors,
0:21:59 > 0:22:04this has actually meant a cut in real terms in the last two years.
0:22:04 > 0:22:08Every single year, the health system has to look at what it will cost to
0:22:08 > 0:22:12run the same system next year, taking into account new services
0:22:12 > 0:22:15that it needs to bring online, the new drugs that are coming in,
0:22:15 > 0:22:19paying for the inflation that's there in the middle of all that.
0:22:19 > 0:22:21So every single year it has to find 6%.
0:22:21 > 0:22:25And the numbers are going to get more difficult.
0:22:25 > 0:22:28This Department of Health briefing document predicts
0:22:28 > 0:22:32that next year's shortfall will be almost double this year's.
0:22:35 > 0:22:40Remember, we've had a 6% growth in demand for services in the health service
0:22:40 > 0:22:43and a 2% increase in resources, and after four years,
0:22:43 > 0:22:44that is beginning to show.
0:22:44 > 0:22:47Those tensions are beginning to become very evident.
0:22:47 > 0:22:52We do need extra money. That's an absolute a priority.
0:22:52 > 0:22:55But where is the money going to come from to provide care
0:22:55 > 0:22:57for increasing numbers of cancer patients,
0:22:57 > 0:23:03with rising costs and inevitably less and less money coming from Westminster?
0:23:03 > 0:23:09The Executive has now got to raise or find a serious sum of money
0:23:09 > 0:23:12from a stagnant or falling budget.
0:23:12 > 0:23:14That is the business of government.
0:23:14 > 0:23:18Governments all over the world have to take these decisions.
0:23:18 > 0:23:22If it can't do that, really it isn't fit for purpose.
0:23:22 > 0:23:27You need to start looking at difficult issues like water charging, public sector pay,
0:23:27 > 0:23:29perhaps putting up the regional rate significantly.
0:23:29 > 0:23:32Stormont has never done that.
0:23:32 > 0:23:35And when you consider the devolution of corporation tax and income tax
0:23:35 > 0:23:38quite likely, do we put it up to pay for health,
0:23:38 > 0:23:42or do we take a gamble and put them down and hope for growth?
0:23:42 > 0:23:47Suddenly you are confronting major, difficult, quite ideological questions.
0:23:47 > 0:23:50The current budget problems are partly as a result
0:23:50 > 0:23:54of the Executive's failure to agree to implement welfare reform here.
0:23:54 > 0:23:59As a result, the British Treasury is imposing fines on Stormont -
0:23:59 > 0:24:01£7.5 million a month.
0:24:01 > 0:24:05That is money that could be spent elsewhere.
0:24:05 > 0:24:09Whatever money might be saved by agreeing welfare reform,
0:24:09 > 0:24:14currently the cost of £7.5 million a month,
0:24:14 > 0:24:20one month of that would pay for a Cancer Drugs Fund in its entirety
0:24:20 > 0:24:21for Northern Ireland.
0:24:21 > 0:24:25But the Stormont stalemate makes something seemingly straightforward
0:24:25 > 0:24:27apparently impossible.
0:24:27 > 0:24:31It's an enforced mandatory coalition which, under the present structure,
0:24:31 > 0:24:33means decision-making is painfully slow,
0:24:33 > 0:24:35or null and void, it just can't happen.
0:24:35 > 0:24:39I think we agreed something has to be done to make the Executive
0:24:39 > 0:24:42more fleet of foot and to make decisions.
0:24:42 > 0:24:45At the minute, there's
0:24:45 > 0:24:48so much lying out there gathering dust, it's an embarrassment.
0:24:48 > 0:24:52We won't be part of listening to a Cabinet of billionaires
0:24:52 > 0:24:57requesting we tax or target those who are already most vulnerable.
0:24:57 > 0:25:01That is not the way that our society needs to go forward.
0:25:09 > 0:25:13But Allister blames all the politicians at Stormont
0:25:13 > 0:25:14for foot-dragging.
0:25:14 > 0:25:18He believes there are ways money could be found to help
0:25:18 > 0:25:20people in his situation.
0:25:20 > 0:25:24I feel angry with the situation. It's extremely frustrating.
0:25:24 > 0:25:27The amount of money involved here is quite small.
0:25:27 > 0:25:29It's really about how it's delivered.
0:25:29 > 0:25:33People are arguing about ideology, they're arguing about principles
0:25:33 > 0:25:36whilst men and women are dying.
0:25:36 > 0:25:41That's the crazy bit. It can be done.
0:25:41 > 0:25:46It's totally and utterly doable, they just can't agree on the way forward.
0:25:53 > 0:25:57But even if the parties were to find money in the budget for a Cancer Drugs Fund,
0:25:57 > 0:26:02for Allister and Vera, it may be too late.
0:26:04 > 0:26:07I just know time's running out.
0:26:08 > 0:26:11It's probably running out faster than I would like it to.
0:26:11 > 0:26:14But it's not just me, there's lots of people in the same boat.
0:26:14 > 0:26:17People will die tomorrow or next month, or whatever,
0:26:17 > 0:26:20and never benefit from the drugs that could help them,
0:26:20 > 0:26:22or at least ease their suffering.
0:26:22 > 0:26:27Every single second of every day that people procrastinate,
0:26:27 > 0:26:29that situation perpetuates.
0:26:34 > 0:26:37It's very difficult to think that my mum's life is coming down
0:26:37 > 0:26:39to finances.
0:26:39 > 0:26:44For us, obviously our desire is to prolong life as much as possible
0:26:44 > 0:26:48and to not have her to make choices, that drugs
0:26:48 > 0:26:52available in England should be available to her here in Northern Ireland.
0:26:57 > 0:27:01I would love to have the drug and have it for myself, for other people.
0:27:01 > 0:27:06But I have to accept that in my time I might not get it.
0:27:06 > 0:27:10But if I fight for it now, maybe it will be available someday.
0:27:13 > 0:27:17People say, "We can't afford this, we can't afford that."
0:27:17 > 0:27:22I say to them, "Walk a mile in my shoes and see if you can afford it."
0:27:24 > 0:27:26I feel angry at my situation,
0:27:26 > 0:27:32at the existence of drugs that could help, and sadness that society
0:27:32 > 0:27:37and our politicians can't come together to make this a real possibility.
0:27:37 > 0:27:40I've come through crises before.
0:27:40 > 0:27:45I've survived much longer than many people in my position.
0:27:45 > 0:27:47I'm going through a crisis at the minute.
0:27:47 > 0:27:50It might come out to my satisfaction, it may not.
0:27:50 > 0:27:52I have no way of knowing, I just
0:27:52 > 0:27:58know the drugs I need are there and I really need to have a go at them.
0:27:58 > 0:28:03They may not work, but I just want the opportunity to try them.