Cancer: Devolution of Care Spotlight

Hundreds of cancer patients in Northern Ireland cannot get

drugs that are free in England.

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

I would love to have the drug.

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

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

Tonight, we investigate why it is one rule here

and another rule in England.

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

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

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

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

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

Allister had no real symptoms, so for him

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

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

You hear it but you don't believe it.

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

I was just shell-shocked, literally.

I mean, I think turned around

to the urologist and said, "How long?"

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

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

has delayed the growth of the cancer.

In January last year,

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

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

But the cancer returned.

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

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

in the third lumber in my spine.

But also there was one in or near my lung.

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

It's incurable.

They were very straight with me.

They told me I have incurable cancer.

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

I don't particularly want to know that.

I am very pragmatic and I sort of accepted it.

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

There have been huge strides in cancer research

and care over the last two decades.

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

Even with terminal cancer, people are living longer

by finding drugs that delay the growth of tumours.

Since Allister was first diagnosed,

several new drugs have been developed

which have helped him live a lot longer than expected.

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

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

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

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

Tell me about the treatment you've been getting,

where you've got to with your treatment.

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

in itself, quite unusual.

Very few people get to a second batch.

-How is the chemo helping you, Allister?

-The chemo's not a cure.

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

for these other drugs which are in development.

The longer the chemo works,

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

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

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

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

-Hello, Joe.

-Allister, good to see you. This way.

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

obviously I need a break.

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

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

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

It'll be down to funding, basically?

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

there's no doubt about that.

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

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

It is frustrating for me, as an oncologist,

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

If I was working in England, no problem.

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

the National Institute of Health and Care Excellence.

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

certain new and expensive drugs from the pharmaceutical companies.

The companies are charging tens of thousands of pounds

for some cancer drugs -

that is just for one person's treatment.

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

and make a profit.

NICE was developed by the last Labour administration in 1999,

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

so-called postcode prescribing across the UK.

What NICE allowed was a system whereby everyone had equal

assess to the same treatment across the UK.

But that equal access all changed in 2011.

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

This was after a public outcry,

that NICE was not approving some newer drugs that could extend

patients' lives, and reduce suffering,

because they cost too much.

But our devolved administration at Stormont did not set up

a fund for Northern Ireland.

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

available here.

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

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

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

And whilst personally I believe

that the NICE process was fallible,

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

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

in England has undermined.

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

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

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

approved by NICE is very small.

Patients have to prove

they would respond exceptionally well to treatment.

While this is under review,

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

Every year, this leaves hundreds of cancer sufferers

here in Northern Ireland

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

It is estimated it would cost between £5 million

and £7 million to create a Cancer Drugs Fund.

The financial pressure on cancer services is something

Allister now knows all about.

The drug he wants has now been approved by NICE,

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

£25,000 for a course of tablets,

and it is up to individual health trusts

to judge if they can afford this.

In England, if they won't pay,

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

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

the desert, dying of thirst,

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

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

and takes it away.

It's cruel. It is so cruel

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

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

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

When Vera, along with her daughter, Lyn,

went to see her oncologist, he also

informed them that a drug existed in England

that may extend her life...

at a price.

The drug is called sorafenib.

NICE says it doesn't provide

enough benefit to patients to justify its high cost.

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

It could potentially stop the growth of Vera's cancer

and alleviate her pain.

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

that's £36,000 a year.

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

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

I have savings and I could use them.

I know my savings won't last for ever.

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

which may or may not work.

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

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

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

What would happen?

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

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

the treatment would stop.

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

Vera moving there to get the drug on the NHS.

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

but I also have to consider what her needs are,

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

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

a friend's mum could have in England.

That makes me very upset.

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

I don't particularly want to do that.

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

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

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

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

The charity Cancer Focus NI is running a campaign for equal

access to the newer life-extending cancer drugs for people

in Northern Ireland.

Chief Executive Roisin Foster says that since June,

more than 20,000 people have signed a petition.

I think we need to keep the focus

on the cancer patients in this discussion.

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

that other patients can in other parts of the UK.

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

Despite being very ill,

some are actually moving to England to access drugs.

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

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

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

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

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

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

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

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

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

In 2011, there was

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

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

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

Essentially, it has put other priorities first.

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

a prescription charge.

But the Stormont Executive has failed to agree this.

Some pharmaceutical companies also offer financial assistance

for the next five years to help purchase

the newer medicines.

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

says it would not cover the cost

of a drugs fund now or in the future.

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

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

treated less favourably than if I live in Basingstoke?

Surely we're all part of the United Kingdom,

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

Jim Wells is the new Health Minister.

In his first interview since taking up the post,

he seems to have changed his tune.

If I provide £30,000 for a drug

that will give someone an extra three months of life,

that's the equivalent to two heart bypasses,

which could give someone an extra 25 years of life.

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

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

suggested introducing

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

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

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

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

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

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

really is getting nowhere.

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

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

The prescription charge will not be the solution,

to simply tax the sick.

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

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

We have more people on sickness benefits than anywhere

else in the UK.

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

and they use the health service most.

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

not least cancer services.

The rate of people getting cancer is growing fast,

because people are living longer.

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

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

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

While Martin Eatock wants patients here to have access

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

areas of cancer care need money also.

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

They are life-extending drugs,

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

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

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

and then even thinking beyond somebody who has a diagnosis

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

um, the...

..the spend on cancer drugs,

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

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

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

It's a great misconception when they say,

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

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

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

from people to people.

You don't just set your watch and go,

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

It doesn't work like that.

You could survive many, many months or many years.

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

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

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

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

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

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

Difficult financial

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

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

in the number of patients diagnosed

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

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

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

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

Already, waiting times for patients are causing alarm.

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

with possible cancer

to their first definitive cancer treatment.

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

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

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

The time from symptoms to diagnosis is very crucial.

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

the better the outcome.

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

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

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

Until recently, John Compton was the chief executive

of the Health and Social Care Board.

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

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

because they do get a priority

and people are very, very anxious about it

inside the system because people who work in the system

know the potential implications of all of this.

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

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

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

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

urgent breast cancer cases.

Spotlight has discovered there has recently been

a critical deterioration in referral times.

All referrals should take place within 14 days.

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

How did that happen, is it about money?

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

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

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

the trusts acted immediately.

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

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

to meet demand.

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

In the last three years,

it has allocated small increases in funds.

But after inflation and other factors,

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

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

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

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

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

So every single year it has to find 6%.

And the numbers are going to get more difficult.

This Department of Health briefing document predicts

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

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

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

that is beginning to show.

Those tensions are beginning to become very evident.

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

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

for increasing numbers of cancer patients,

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

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

from a stagnant or falling budget.

That is the business of government.

Governments all over the world have to take these decisions.

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

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

perhaps putting up the regional rate significantly.

Stormont has never done that.

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

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

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

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

The current budget problems are partly as a result

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

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

£7.5 million a month.

That is money that could be spent elsewhere.

Whatever money might be saved by agreeing welfare reform,

currently the cost of £7.5 million a month,

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

for Northern Ireland.

But the Stormont stalemate makes something seemingly straightforward

apparently impossible.

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

means decision-making is painfully slow,

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

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

more fleet of foot and to make decisions.

At the minute, there's

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

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

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

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

But Allister blames all the politicians at Stormont

for foot-dragging.

He believes there are ways money could be found to help

people in his situation.

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

The amount of money involved here is quite small.

It's really about how it's delivered.

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

whilst men and women are dying.

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

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

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

for Allister and Vera, it may be too late.

I just know time's running out.

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

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

People will die tomorrow or next month, or whatever,

and never benefit from the drugs that could help them,

or at least ease their suffering.

Every single second of every day that people procrastinate,

that situation perpetuates.

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

to finances.

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

and to not have her to make choices, that drugs

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

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

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

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

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

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

I feel angry at my situation,

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

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

I've come through crises before.

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

I'm going through a crisis at the minute.

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

I have no way of knowing, I just

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

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