Cancer: Devolution of Care Spotlight


Cancer: Devolution of Care

With a political row at Stormont over health funding, Stephen Dempster investigates the impact on cancer services in Northern Ireland.


Similar Content

Browse content similar to Cancer: Devolution of Care. Check below for episodes and series from the same categories and more!

Transcript


LineFromTo

Hundreds of cancer patients in Northern Ireland cannot get

0:00:020:00:04

drugs that are free in England.

0:00:040:00:06

It is cruel. It is inhuman and wrong. It is fundamentally wrong.

0:00:060:00:11

I would love to have the drug.

0:00:130:00:15

I would love to have it for myself and for other people.

0:00:150:00:18

But I have to accept that in my time I might not get it.

0:00:180:00:22

Tonight, we investigate why it is one rule here

0:00:240:00:27

and another rule in England.

0:00:270:00:30

58-year-old Allister Murphy from Newtownabbey is ill with cancer.

0:00:510:00:56

For the last six years, he has been fighting to stay alive.

0:01:000:01:04

I was diagnosed in February 2008, with advanced metastatic prostate cancer -

0:01:060:01:12

prostate cancer which has escaped the prostate and gone into my bones.

0:01:120:01:18

It's spread throughout my body, which means it's incurable and ultimately terminal.

0:01:180:01:23

Allister had no real symptoms, so for him

0:01:240:01:28

and his wife, Laura, the diagnosis came as a shock.

0:01:280:01:32

It's like a bombshell, almost like an out-of-body experience.

0:01:320:01:38

You hear it but you don't believe it.

0:01:380:01:41

The old things about denial and shock, fear, all those things are true. My wife was on the floor.

0:01:410:01:46

I was just shell-shocked, literally.

0:01:460:01:50

I mean, I think turned around

0:01:500:01:54

to the urologist and said, "How long?"

0:01:540:01:58

Prognosis was around about two years, maybe three, tops.

0:01:580:02:04

Six years later, a succession of different life-extending drugs

0:02:040:02:08

has delayed the growth of the cancer.

0:02:080:02:11

In January last year,

0:02:170:02:18

72-year-old Vera Saunderson from Carrickfergus was diagnosed with liver cancer,

0:02:180:02:23

which spread to her bowel. She was successfully treated for this.

0:02:230:02:29

But the cancer returned.

0:02:290:02:31

By March this year, I developed a pain in my back and it got worse and worse.

0:02:310:02:37

It was a very severe pain and they discovered it was a tumour

0:02:370:02:40

in the third lumber in my spine.

0:02:400:02:44

But also there was one in or near my lung.

0:02:440:02:47

When your oncologist phoned you, what did he say about the prognosis?

0:02:470:02:52

It's incurable.

0:02:520:02:53

They were very straight with me.

0:02:530:02:55

They told me I have incurable cancer.

0:02:550:02:58

They didn't say anything about life expectancy and I didn't ask.

0:02:580:03:02

I don't particularly want to know that.

0:03:020:03:06

I am very pragmatic and I sort of accepted it.

0:03:060:03:10

I think I had guessed that it wasn't good news.

0:03:100:03:13

There have been huge strides in cancer research

0:03:190:03:22

and care over the last two decades.

0:03:220:03:25

Treatment has become very specific to an individual's particular condition.

0:03:250:03:30

Even with terminal cancer, people are living longer

0:03:300:03:35

by finding drugs that delay the growth of tumours.

0:03:350:03:38

Since Allister was first diagnosed,

0:03:380:03:41

several new drugs have been developed

0:03:410:03:44

which have helped him live a lot longer than expected.

0:03:440:03:48

Whilst you are surviving with this drug, the research scientists are developing

0:03:480:03:52

new drugs, so the new stepping stone could be appearing very soon.

0:03:520:03:57

And that has been the case for me and others in a similar position.

0:03:570:04:02

'Today, Allister is on his way to the cancer centre in Belfast.'

0:04:040:04:08

Tell me about the treatment you've been getting,

0:04:110:04:13

where you've got to with your treatment.

0:04:130:04:16

Currently, I'm on my second batch of chemotherapy, which is,

0:04:160:04:20

in itself, quite unusual.

0:04:200:04:22

Very few people get to a second batch.

0:04:220:04:26

-How is the chemo helping you, Allister?

-The chemo's not a cure.

0:04:260:04:31

What it's doing is it's buying me some extra time,

0:04:310:04:35

for these other drugs which are in development.

0:04:350:04:39

The longer the chemo works,

0:04:390:04:41

the more time there is for these other drugs to come to market.

0:04:410:04:45

But there's no doubt that my luck is running out.

0:04:450:04:49

There is now another new drug that could give him a chance

0:04:490:04:52

to keep extending his life but it's not available here right now.

0:04:520:04:57

-Hello, Joe.

-Allister, good to see you. This way.

0:04:570:05:02

So, Joe, when we get to the end of this current ten sessions of chemo,

0:05:030:05:06

obviously I need a break.

0:05:060:05:09

But what I really want is access to this new drug, enzalutamide.

0:05:090:05:13

I'm hearing great things but I'm concerned about its availability.

0:05:130:05:18

I hope by the time you have finished chemotherapy, we will have access to it.

0:05:180:05:22

It'll be down to funding, basically?

0:05:220:05:24

Yes, I think we are definitely lagging behind in the time frame to get this drug,

0:05:240:05:30

there's no doubt about that.

0:05:300:05:32

Thankfully, at the moment the chemotherapy is going well, you're responding to it,

0:05:320:05:35

but if it wasn't and you needed something right now, we couldn't give you that drug.

0:05:350:05:39

It is frustrating for me, as an oncologist,

0:05:390:05:41

that if you did need it, I couldn't give it to you,

0:05:410:05:44

If I was working in England, no problem.

0:05:440:05:48

All drugs in the UK are approved for use by NICE -

0:05:510:05:53

the National Institute of Health and Care Excellence.

0:05:530:05:57

It makes difficult judgments as to whether or not the NHS can afford

0:05:570:06:04

certain new and expensive drugs from the pharmaceutical companies.

0:06:040:06:09

The companies are charging tens of thousands of pounds

0:06:090:06:12

for some cancer drugs -

0:06:120:06:14

that is just for one person's treatment.

0:06:140:06:17

They want to claw back the cost of developing the drug,

0:06:170:06:20

and make a profit.

0:06:200:06:22

NICE was developed by the last Labour administration in 1999,

0:06:220:06:27

and it was brought in to get rid of a problem that existed with

0:06:270:06:33

so-called postcode prescribing across the UK.

0:06:330:06:36

What NICE allowed was a system whereby everyone had equal

0:06:360:06:42

assess to the same treatment across the UK.

0:06:420:06:46

But that equal access all changed in 2011.

0:06:460:06:51

The Westminster government set up a £200 million Cancer Drugs Fund in England.

0:06:510:06:57

This was after a public outcry,

0:06:570:06:59

that NICE was not approving some newer drugs that could extend

0:06:590:07:03

patients' lives, and reduce suffering,

0:07:030:07:06

because they cost too much.

0:07:060:07:09

But our devolved administration at Stormont did not set up

0:07:090:07:13

a fund for Northern Ireland.

0:07:130:07:15

So, at present, around 40 different drug treatments are not

0:07:150:07:18

available here.

0:07:180:07:20

We have gone back to the situation roughly we were in before 1999

0:07:200:07:24

where there are some patients within the UK who have access to cancer

0:07:240:07:29

drugs that other parts of the UK are unable to access.

0:07:290:07:33

And whilst personally I believe

0:07:330:07:37

that the NICE process was fallible,

0:07:370:07:41

and at times the decisions were not correct, it provided an equal

0:07:410:07:48

access to drugs for all patients in the UK that the Cancer Drugs Fund

0:07:480:07:54

in England has undermined.

0:07:540:07:56

In England, anyone who wants to try one of the new drugs can

0:07:560:08:01

apply to the Cancer Drugs Fund and is likely to get the treatment,

0:08:010:08:06

whereas here, your chance of getting a drug that has not been

0:08:060:08:10

approved by NICE is very small.

0:08:100:08:12

Patients have to prove

0:08:120:08:13

they would respond exceptionally well to treatment.

0:08:130:08:17

While this is under review,

0:08:170:08:19

the result is that currently only 5% get the new drugs here.

0:08:190:08:22

Every year, this leaves hundreds of cancer sufferers

0:08:220:08:26

here in Northern Ireland

0:08:260:08:28

unable to get the drugs which just might extend their lives.

0:08:280:08:31

It is estimated it would cost between £5 million

0:08:310:08:35

and £7 million to create a Cancer Drugs Fund.

0:08:350:08:39

The financial pressure on cancer services is something

0:08:390:08:42

Allister now knows all about.

0:08:420:08:44

The drug he wants has now been approved by NICE,

0:08:440:08:48

and could be available here in six months' time. But it is costly.

0:08:480:08:53

£25,000 for a course of tablets,

0:08:530:08:56

and it is up to individual health trusts

0:08:560:08:59

to judge if they can afford this.

0:08:590:09:01

In England, if they won't pay,

0:09:010:09:04

patients can still get this drug through the Cancer Drugs Fund.

0:09:040:09:08

The existence of the new drugs are like a man crawling through

0:09:080:09:11

the desert, dying of thirst,

0:09:110:09:14

and someone hands him a glass of water, and then all of a sudden,

0:09:140:09:17

he says, "Oops, sorry, I didn't realise you're not English,"

0:09:170:09:19

and takes it away.

0:09:190:09:22

It's cruel. It is so cruel

0:09:220:09:24

to see men and women in Northern Ireland dying unnecessarily, or

0:09:240:09:28

at least not having the opportunity to have their lives extended.

0:09:280:09:33

It's inhuman and it's wrong. It's fundamentally wrong.

0:09:330:09:38

When Vera, along with her daughter, Lyn,

0:09:400:09:42

went to see her oncologist, he also

0:09:420:09:45

informed them that a drug existed in England

0:09:450:09:48

that may extend her life...

0:09:480:09:50

at a price.

0:09:500:09:52

The drug is called sorafenib.

0:09:540:09:57

NICE says it doesn't provide

0:09:570:09:59

enough benefit to patients to justify its high cost.

0:09:590:10:02

But again it is available in England through the Cancer Drugs Fund.

0:10:020:10:06

It could potentially stop the growth of Vera's cancer

0:10:070:10:11

and alleviate her pain.

0:10:110:10:13

But she, herself, would have to pay £3,000 a month -

0:10:130:10:17

that's £36,000 a year.

0:10:170:10:21

When you own your own house, you have equity, you have a wee bit of savings.

0:10:210:10:26

You go through that, I've done all that, I've done the sums.

0:10:260:10:29

I have savings and I could use them.

0:10:290:10:33

I know my savings won't last for ever.

0:10:330:10:36

I'm not prepared to sell the roof over my head to fund a drug

0:10:360:10:40

which may or may not work.

0:10:400:10:42

I'm not sure what would happen if you could afford to buy

0:10:440:10:47

the drug for a certain period of time and then you had to stop.

0:10:470:10:52

I'm not sure what would happen then. Would it be withdrawn from you?

0:10:520:10:56

What would happen?

0:10:560:10:57

I just don't know at that stage what would happen.

0:10:570:10:59

In fact, once Vera couldn't afford to pay for the drug,

0:10:590:11:03

the treatment would stop.

0:11:030:11:05

Because Lyn lives in England, she and her mum have discussed

0:11:050:11:08

Vera moving there to get the drug on the NHS.

0:11:080:11:12

I'd have liked to have done anything to prolong her life,

0:11:120:11:16

but I also have to consider what her needs are,

0:11:160:11:18

and this is her home here, and she doesn't want to leave her home.

0:11:180:11:22

It makes me very upset that she can't have something that

0:11:220:11:26

a friend's mum could have in England.

0:11:260:11:29

That makes me very upset.

0:11:290:11:31

But it's clear that Vera doesn't want to move to England.

0:11:310:11:36

I don't particularly want to do that.

0:11:360:11:38

I don't want to stay away from home for months at a time.

0:11:380:11:42

I want the best of both worlds, but I'm not pushing for this drug

0:11:420:11:48

simply because I think at my age, and my time of life,

0:11:480:11:52

there are probably people on the list who need it more me.

0:11:520:11:55

The charity Cancer Focus NI is running a campaign for equal

0:11:550:11:59

access to the newer life-extending cancer drugs for people

0:11:590:12:02

in Northern Ireland.

0:12:020:12:06

Chief Executive Roisin Foster says that since June,

0:12:060:12:10

more than 20,000 people have signed a petition.

0:12:100:12:14

I think we need to keep the focus

0:12:140:12:16

on the cancer patients in this discussion.

0:12:160:12:20

They are the people suffering because they cannot get access to drugs

0:12:200:12:24

that other patients can in other parts of the UK.

0:12:240:12:26

Cancer Focus says people desperate to stay alive are taking drastic action.

0:12:260:12:32

Despite being very ill,

0:12:320:12:34

some are actually moving to England to access drugs.

0:12:340:12:38

We have met with people who are self-funding, who are working through

0:12:380:12:42

their private pension plan money, who will leave loved ones with no money -

0:12:420:12:48

their wives, their children - but they feel they have no option.

0:12:480:12:55

They are paying £2,000, £3,000 a week, and yet if they

0:12:550:12:59

didn't live in Belfast, and lived in Bradford, it would be available to them.

0:12:590:13:03

They have paid the same taxes, the same National Insurance.

0:13:030:13:08

Cancer Focus is due to take its campaign for equal access to the drugs to Stormont next week.

0:13:080:13:14

Since the Cancer Drugs Fund was set up in England, MLAs have,

0:13:140:13:19

on a number of occasions, debated if we should have a similar arrangement here.

0:13:190:13:25

In 2011, there was

0:13:250:13:28

an agreement between the parties that a fund should be created.

0:13:280:13:31

But three years later, they have still not found the money to deliver on that pledge.

0:13:310:13:36

So why doesn't Stormont create a Cancer Drugs Fund?

0:13:360:13:41

Essentially, it has put other priorities first.

0:13:410:13:45

There is, for instance, an option to raise money required for a Cancer Drugs Fund by reintroducing

0:13:450:13:50

a prescription charge.

0:13:500:13:53

But the Stormont Executive has failed to agree this.

0:13:530:13:56

Some pharmaceutical companies also offer financial assistance

0:13:560:14:00

for the next five years to help purchase

0:14:000:14:03

the newer medicines.

0:14:030:14:05

But the Department of Health has rejected this deal, too, because it

0:14:050:14:09

says it would not cover the cost

0:14:090:14:11

of a drugs fund now or in the future.

0:14:110:14:14

One of those who in the past called for equal access is Jim Wells.

0:14:140:14:19

If I am cancer sufferer in Ballymena, why should I be

0:14:190:14:22

treated less favourably than if I live in Basingstoke?

0:14:220:14:26

Surely we're all part of the United Kingdom,

0:14:260:14:28

we all pay the same taxes and are therefore entitled to the same drug treatment.

0:14:280:14:32

Jim Wells is the new Health Minister.

0:14:320:14:35

In his first interview since taking up the post,

0:14:350:14:38

he seems to have changed his tune.

0:14:380:14:41

If I provide £30,000 for a drug

0:14:410:14:43

that will give someone an extra three months of life,

0:14:430:14:47

that's the equivalent to two heart bypasses,

0:14:470:14:50

which could give someone an extra 25 years of life.

0:14:500:14:52

That's the terribly difficult wisdom of some decisions that I have to make.

0:14:520:14:57

Jim Wells' predecessor, Edwin Poots, has on a number of occasions

0:14:580:15:02

suggested introducing

0:15:020:15:04

prescription charges to pay for a drugs fund to treat cancer and other illnesses.

0:15:040:15:10

We can reveal that in recent weeks he was preparing a proposal to

0:15:100:15:14

charge £3 per prescription, but the idea divides the two main parties.

0:15:140:15:19

I think it is fundamentally a good idea in looking at this but the reality is

0:15:210:15:25

certain members of the Executives say they will not have it.

0:15:250:15:29

But at the moment, that proposal, which would bring a lot of money into the system,

0:15:290:15:32

really is getting nowhere.

0:15:320:15:34

I still think it's ridiculous that somebody like myself gets free prescriptions, I think that's wrong.

0:15:340:15:38

We have to keep looking at this but we have to get executive support.

0:15:380:15:42

The prescription charge will not be the solution,

0:15:420:15:46

to simply tax the sick.

0:15:460:15:47

We are opposed to prescription charges and that is loud and clear.

0:15:470:15:53

In Northern Ireland, we have a high dependency on the health service.

0:15:560:16:00

We have more people on sickness benefits than anywhere

0:16:000:16:03

else in the UK.

0:16:030:16:05

Also, significantly, we have the fastest-growing elderly population,

0:16:050:16:10

and they use the health service most.

0:16:100:16:13

This puts a financial strain on all services across health and social care,

0:16:150:16:21

not least cancer services.

0:16:210:16:23

The rate of people getting cancer is growing fast,

0:16:260:16:29

because people are living longer.

0:16:290:16:31

It is estimated one in three of us will get the disease.

0:16:320:16:36

In Northern Ireland, by 2030, cancer rates are expected to have

0:16:360:16:41

risen by more than 100% since the start of the century.

0:16:410:16:46

While Martin Eatock wants patients here to have access

0:16:480:16:51

to the cancer drugs available in England, he also says the harsh reality is other

0:16:510:16:57

areas of cancer care need money also.

0:16:570:17:01

It is important to stress that these are not life-saving drugs.

0:17:010:17:07

They are life-extending drugs,

0:17:070:17:09

and often the extension in life with these drugs is small.

0:17:090:17:14

It's probably fair to say that in the scheme of cancer services

0:17:140:17:20

as a whole, and I'm talking about the whole range of treatments, including surgery, radiotherapy,

0:17:200:17:26

and then even thinking beyond somebody who has a diagnosis

0:17:260:17:30

of cancer, spending on cancer prevention and early diagnosis...

0:17:300:17:34

um, the...

0:17:340:17:36

..the spend on cancer drugs,

0:17:380:17:39

or the additional spend on a Cancer Drugs Fund, has to be

0:17:390:17:44

viewed as a much lower priority than properly organising cancer services.

0:17:440:17:49

But for those suffering from cancer, like Allister, each month is precious.

0:17:510:17:56

It's a great misconception when they say,

0:17:560:17:58

"What's the point of a drug that only extends life by four weeks?"

0:17:580:18:03

They think you will get four weeks and die in agony. That is nonsense.

0:18:030:18:08

It could be four weeks, it could be four years, it's variable

0:18:080:18:11

from people to people.

0:18:110:18:13

You don't just set your watch and go,

0:18:130:18:15

"I must die on Tuesday at two o'clock."

0:18:150:18:18

It doesn't work like that.

0:18:180:18:19

You could survive many, many months or many years.

0:18:190:18:22

It felt cold to be talking about someone's life as a business case.

0:18:220:18:26

Something felt very wrong about it, putting a price on somebody's life.

0:18:260:18:30

You know, was it... Talking about the benefit of this drug,

0:18:300:18:35

could prolong on average three months of somebody's life.

0:18:350:18:38

I thought, "Three months of prolonging somebody's life,

0:18:380:18:41

"when it's your mum, I'll take that."

0:18:410:18:44

Difficult financial

0:18:450:18:47

and ethical decisions will have to be taken about what to spend a limited budget on.

0:18:470:18:52

We're facing a huge pressure in terms of the projected increase

0:18:520:18:56

in the number of patients diagnosed

0:18:560:18:58

with cancer and so there is a greater pressure on the service

0:18:580:19:02

because more treatment is given to a greater number of patients.

0:19:020:19:08

If we don't start addressing that problem now, we will have a cancer

0:19:080:19:12

service in its entirety that is not fit for purpose in 10 to 15 years.

0:19:120:19:20

Already, waiting times for patients are causing alarm.

0:19:230:19:28

It should take no more than 62 days between anyone seeing their GP

0:19:280:19:33

with possible cancer

0:19:330:19:36

to their first definitive cancer treatment.

0:19:360:19:38

The health service has a target of achieving this in 95% of cases,

0:19:380:19:43

but in July this year, it was failing to do this.

0:19:430:19:47

We can reveal in that month the target was met in only 71% of cases.

0:19:470:19:53

The time from symptoms to diagnosis is very crucial.

0:19:530:19:57

Essentially, for almost all cancers, the earlier you diagnose it,

0:19:570:20:01

the better the outcome.

0:20:010:20:03

And the more likely the patient is to survive their cancer.

0:20:030:20:06

If there's slippage there, we will see slippage in survival rates, I'm sure about that.

0:20:060:20:10

So any step back from that is going to be a disaster.

0:20:100:20:13

Until recently, John Compton was the chief executive

0:20:130:20:17

of the Health and Social Care Board.

0:20:170:20:20

Cancer waiting times are progressively slipping, how worried are you about this?

0:20:210:20:26

Clearly concerned if there's any movement in cancer waiting times,

0:20:260:20:30

because they do get a priority

0:20:300:20:32

and people are very, very anxious about it

0:20:320:20:34

inside the system because people who work in the system

0:20:340:20:37

know the potential implications of all of this.

0:20:370:20:40

I don't think we're at the tipping point yet,

0:20:400:20:42

but having discussed the issues, particularly the increasing incidence of cancer

0:20:420:20:46

and the current budget crisis, we may not be too far away from that.

0:20:460:20:50

One area where waiting times have got worse in the last year is

0:20:550:20:59

urgent breast cancer cases.

0:20:590:21:01

Spotlight has discovered there has recently been

0:21:010:21:04

a critical deterioration in referral times.

0:21:040:21:07

All referrals should take place within 14 days.

0:21:070:21:12

But, in July, this was only achieved in 46% of cases.

0:21:140:21:20

How did that happen, is it about money?

0:21:200:21:23

I'd only been in the position six days, and that's one of the issues.

0:21:230:21:26

I want to establish why that did happen, it's very serious.

0:21:260:21:29

But also, I'm reassured that when it was identified,

0:21:290:21:31

the trusts acted immediately.

0:21:310:21:34

The Department of Health also says it is now carrying out a fundamental review of services.

0:21:340:21:40

In this financial year, the Department says it's £140 million short of what it needs

0:21:400:21:46

to meet demand.

0:21:460:21:48

The Stormont Executive has ring-fenced health spending from any cuts.

0:21:480:21:52

In the last three years,

0:21:520:21:54

it has allocated small increases in funds.

0:21:540:21:57

But after inflation and other factors,

0:21:570:21:59

this has actually meant a cut in real terms in the last two years.

0:21:590:22:04

Every single year, the health system has to look at what it will cost to

0:22:040:22:08

run the same system next year, taking into account new services

0:22:080:22:12

that it needs to bring online, the new drugs that are coming in,

0:22:120:22:15

paying for the inflation that's there in the middle of all that.

0:22:150:22:19

So every single year it has to find 6%.

0:22:190:22:21

And the numbers are going to get more difficult.

0:22:210:22:25

This Department of Health briefing document predicts

0:22:250:22:28

that next year's shortfall will be almost double this year's.

0:22:280:22:32

Remember, we've had a 6% growth in demand for services in the health service

0:22:350:22:40

and a 2% increase in resources, and after four years,

0:22:400:22:43

that is beginning to show.

0:22:430:22:44

Those tensions are beginning to become very evident.

0:22:440:22:47

We do need extra money. That's an absolute a priority.

0:22:470:22:52

But where is the money going to come from to provide care

0:22:520:22:55

for increasing numbers of cancer patients,

0:22:550:22:57

with rising costs and inevitably less and less money coming from Westminster?

0:22:570:23:03

The Executive has now got to raise or find a serious sum of money

0:23:030:23:09

from a stagnant or falling budget.

0:23:090:23:12

That is the business of government.

0:23:120:23:14

Governments all over the world have to take these decisions.

0:23:140:23:18

If it can't do that, really it isn't fit for purpose.

0:23:180:23:22

You need to start looking at difficult issues like water charging, public sector pay,

0:23:220:23:27

perhaps putting up the regional rate significantly.

0:23:270:23:29

Stormont has never done that.

0:23:290:23:32

And when you consider the devolution of corporation tax and income tax

0:23:320:23:35

quite likely, do we put it up to pay for health,

0:23:350:23:38

or do we take a gamble and put them down and hope for growth?

0:23:380:23:42

Suddenly you are confronting major, difficult, quite ideological questions.

0:23:420:23:47

The current budget problems are partly as a result

0:23:470:23:50

of the Executive's failure to agree to implement welfare reform here.

0:23:500:23:54

As a result, the British Treasury is imposing fines on Stormont -

0:23:540:23:59

£7.5 million a month.

0:23:590:24:01

That is money that could be spent elsewhere.

0:24:010:24:05

Whatever money might be saved by agreeing welfare reform,

0:24:050:24:09

currently the cost of £7.5 million a month,

0:24:090:24:14

one month of that would pay for a Cancer Drugs Fund in its entirety

0:24:140:24:20

for Northern Ireland.

0:24:200:24:21

But the Stormont stalemate makes something seemingly straightforward

0:24:210:24:25

apparently impossible.

0:24:250:24:27

It's an enforced mandatory coalition which, under the present structure,

0:24:270:24:31

means decision-making is painfully slow,

0:24:310:24:33

or null and void, it just can't happen.

0:24:330:24:35

I think we agreed something has to be done to make the Executive

0:24:350:24:39

more fleet of foot and to make decisions.

0:24:390:24:42

At the minute, there's

0:24:420:24:45

so much lying out there gathering dust, it's an embarrassment.

0:24:450:24:48

We won't be part of listening to a Cabinet of billionaires

0:24:480:24:52

requesting we tax or target those who are already most vulnerable.

0:24:520:24:57

That is not the way that our society needs to go forward.

0:24:570:25:01

But Allister blames all the politicians at Stormont

0:25:090:25:13

for foot-dragging.

0:25:130:25:14

He believes there are ways money could be found to help

0:25:140:25:18

people in his situation.

0:25:180:25:20

I feel angry with the situation. It's extremely frustrating.

0:25:200:25:24

The amount of money involved here is quite small.

0:25:240:25:27

It's really about how it's delivered.

0:25:270:25:29

People are arguing about ideology, they're arguing about principles

0:25:290:25:33

whilst men and women are dying.

0:25:330:25:36

That's the crazy bit. It can be done.

0:25:360:25:41

It's totally and utterly doable, they just can't agree on the way forward.

0:25:410:25:46

But even if the parties were to find money in the budget for a Cancer Drugs Fund,

0:25:530:25:57

for Allister and Vera, it may be too late.

0:25:570:26:02

I just know time's running out.

0:26:040:26:07

It's probably running out faster than I would like it to.

0:26:080:26:11

But it's not just me, there's lots of people in the same boat.

0:26:110:26:14

People will die tomorrow or next month, or whatever,

0:26:140:26:17

and never benefit from the drugs that could help them,

0:26:170:26:20

or at least ease their suffering.

0:26:200:26:22

Every single second of every day that people procrastinate,

0:26:220:26:27

that situation perpetuates.

0:26:270:26:29

It's very difficult to think that my mum's life is coming down

0:26:340:26:37

to finances.

0:26:370:26:39

For us, obviously our desire is to prolong life as much as possible

0:26:390:26:44

and to not have her to make choices, that drugs

0:26:440:26:48

available in England should be available to her here in Northern Ireland.

0:26:480:26:52

I would love to have the drug and have it for myself, for other people.

0:26:570:27:01

But I have to accept that in my time I might not get it.

0:27:010:27:06

But if I fight for it now, maybe it will be available someday.

0:27:060:27:10

People say, "We can't afford this, we can't afford that."

0:27:130:27:17

I say to them, "Walk a mile in my shoes and see if you can afford it."

0:27:170:27:22

I feel angry at my situation,

0:27:240:27:26

at the existence of drugs that could help, and sadness that society

0:27:260:27:32

and our politicians can't come together to make this a real possibility.

0:27:320:27:37

I've come through crises before.

0:27:370:27:40

I've survived much longer than many people in my position.

0:27:400:27:45

I'm going through a crisis at the minute.

0:27:450:27:47

It might come out to my satisfaction, it may not.

0:27:470:27:50

I have no way of knowing, I just

0:27:500:27:52

know the drugs I need are there and I really need to have a go at them.

0:27:520:27:58

They may not work, but I just want the opportunity to try them.

0:27:580:28:03

Download Subtitles

SRT

ASS