16/10/2013 The Wales Report

Tonight, cancer care in Wales, what you get depends on where you live.

We will have some answers. Public spending in Wales under more

pressure. Does it mean we value European funding more than ever? And

one of Wales's top writers tells us there can never be an excuse for

depriving young people of the opportunity for creative activity.

Stay with us for The Wales Report. Good evening. It is good to be back

in a new weekday slot with our chance to look at the problems of

successes in Welsh life and question now that make decisions affecting us

all. Tonight, a special investigation. You tell us this

subject is important to you. Cancer care in Wales is a mixed story.

There are some notable successes are some examples of world-class

treatment, but the way people can access specialist treatments in the

NHS is neither consistent nor straightforward. It depends largely

on where you live. Some people are lucky. Some people are desperately

unlucky. There are very loud calls for the system to change. Helen

Callaghan brings us the stories of two Welsh cancer patients and two

very different experiences. I always make them a cake. These

friends were diagnosed with the same advanced cancer but their NHS

treatment could not have been different. A chakra more different.

Both were told a drug could prolong their lives but only Jean got it in

Wales. Annie did not. How can it be fair, they both ask? Gene from Neath

had advanced ovarian cancer. As part of her treatment, she was given a

drug which can halt the progression of the disease by up to four months.

After surgery, other surgery and avastin, she is in remission. The

first apartment I had with the oncologist, I saw the registrar and

he went through the treatment -- the first appointment. He said, you will

be having avastin. I think it is phenomenal we get it and I don't see

what other health boards cannot give it as well. Annie lives in Cardiff,

40 miles away from Jean. She was told that of -- that avastin could

help but she would not be able to have it. I could have been another

six months, possibly longer, and I would not have to endure

chemotherapy again because avastin gives you a longer remission.

Although it has known benefits, those who decide which offers best

value for money for the NHS think it is too expensive. It is not

routinely given out on the NHS. In England, there is a cancer drugs

fund which pays for medicines that are not normally available from the

health service. To take advantage of that fund, Annie has gone to

shocking lengths. She is travelling back and forth to London where she

has rented a house, swapping the Welsh NHS for the English NHS,

giving her access to the cancer drugs fund and the treatment she

wanted. It involves considerable travel, expense and some distress

because if you are a cancer patient, it is not the best thing in

the world, to be travelling back and forth. But I am getting access to

the cancer drug fund and it gives me hope. Jean and her husband feel

guilty. She got the drug just by virtue of where she happens to live.

I would not like to have to fight for it. I do not know how Annie is

doing it. I would not like to have moved house just to get the

treatment. I think everybody deserves it. It has given me my life

back. They are among hundreds of patients

across Wales struggling to get an unapproved cancer drugs and

struggling to understand why it access to them is a postcode

lottery. They want to know who makes these life changing decisions. Under

the current system, any patient living anywhere in Wales trying to

get access to an unapproved drug or procedure by making an individual

patient funding requests. In essence, they have to try and

convince a panel that there are cases exceptional. There are seven

of those panels, one for each health board area. They consist of medical

professionals and one lay person. Most members are appointed by the

health board and some by the community health Council. All of the

panels follow the same guidelines, but there is room for

interpretation. They consider benefits and cost implications.

Since there are seven of them, many are asking, can there ever be

consistency right across Wales? There is not all Wales guidance

issued from the Welsh government on how an individual patient funding

request should be considered. You would expect the guidance to be

followed and there to be some consistency in the type of evidence,

the type of people involved in making those decisions. You would

expect some consistency according to the guidance. However, our research

shows that some funding panels say now much more than others. Our

exclusive figures show a huge variation when it comes to giving

out unapproved cancer drugs. There is a 20% difference in approval

rates. Of the six health boards which responded, Cardiff and Vale's

panel were most likely to say no. They only approved a third of

request. Other boards were in the middle.

Those decisions really count. After one panel approved all avastin

request for advanced ovarian cancer last year, the health board decided

to change their policy. Now patients with that type and stage of cancer

living in the area can get avastin without having to apply for it. At

the moment, they are the only health board in Wales where this happens.

They have called for a review of the drug's use on the NHS. For the

friends who have had such different experiences, that review cannot come

a moment too soon. I feel I am very lucky being here because the health

authority is funding it for us. When I see a friend of mine who cannot

get it, who has to relocate, I feel quite cross. I feel it is a postcode

lottery. When I was diagnosed with cancer, I did not understand all of

this. Patients trust that people are doing the best for them, that their

politicians are doing the best and that they will be treated fairly. I

now have evidence that there is no fair treatment.

With me is a doctor who is a chief medical officer for Wales. Thank you

for coming to talk to us. No one watching that will be unaffected

because there are very powerful emotions involved. It is a strong

verdict from one of the patients. There is no fairness in this system

in Wales. Is she right to say that? I am very concerned to hear the

story of what has happened. Our whole approach is to use the

guidance, the best evidence we have, to make as many drugs as possible

available on the NHS to everyone who needs it in Wales. The policy is a

couple of years old and we have been looking at it to see if we can

improve it. Some of the things are consistency, transparency and the

feedback from very difficult stories, we need to look at this and

make sure that we have got it better developed so that we are more

consistent. The evidence seems to be that in considering individual cases

different panels attach different weights and importance to different

factors. It is the failure to have a consistent approach that is

distressing people. How can you get to a position where you can say

confidently that in Wales we have a system which is fair to everyone

regardless of where they live? This policy was introduced as an all

Wales policy and we have looked at it this year and seeing that we need

to make improvements. This confirms it from the patient perspective as

well. We'll so have a review of how to bring in drugs for rare

conditions generally. That will be coming forward in the next few

weeks. I am quite clear that we must continue to develop a fair approach,

a transparent approach and that is what we are looking to do.

Interesting to see the figures. I was surprised to see the difference

in the rejection rates, if you like, or in the acceptance rates. In

Cardiff, a bit of a task to convince the panels that you need some of the

drugs. Some of our viewers will have noticed that one of the health

boards was not on the list because of reasons best known to them they

did not respond to the request for data. But another health board,

53%. 20% of a margin there. Even allowing for different individuals

and different panels, that has got to be something that you have got to

address seriously. The point of the system is that it is for exceptional

cases so there will be a difference. But you are right. We

need to make sure that the differences are not due to things

that are not being applied consistently. Or people obsessed

with cost. Is it fair for me to say that? People considering not

clinical need but the costs involved. Clearly costs are a factor

but are some people attaching too much weight to cost? We have to look

at it in the round. We spend more per head on cancer in Wales than

elsewhere. We have to make sure we are preventing cancer, screening for

cancer and treating a whole range of cancers as early as possible. Health

boards are charged with making the choices across all of that. They

have to balance those issues. It is a very difficult judgement. Coming

down to individual cases. But I am clear that we need to make sure that

there is objectivity, fairness and transparency in how those decisions

are made. You will not be surprise, nobody watching will be surprise,

when we say that lots of people talking to us have said that it

proves that the fact that England has a cancer drugs fund, it puts

them at an advantage. I know there are arguments either way. But when

you see the fact that someone is making a huge effort to travel

thousands of miles over many months to try to access treatment not

available here, does it strengthen the case for a fund as exists in

England? As you know, we have looked at how we prioritise the choices we

are making. A fund for one type of drug means that other people with

rare diseases, conditions, they are not included in that. We have this

process of considering individual requests. What we are hearing is

feedback that we need to improve the consistency. But not move to a

fund? A fund limits it and does not consider all of the other treatments

available for all sorts of other conditions. People do not have faith

and trust in this process, they do not think they are getting a fair

hearing from the panels, that is very damaging to the credibility of

the service you are providing. For me, that is at the heart of this.

There are choices to be made and we have to be fair to everybody in

Wales. You are saying to people that changes are being considered and you

are clearly hinting that changes will be made to the system as it

currently stands. I want to make sure that I can hand on heart say

that it is a fair and transparent process and we are doing the best we

possibly can for everybody in Wales. Thank you.

Yet again the Welsh government has unveiled the toughest budget since

devolution but this time it has prompted local authorities to

announce what they are calling record spending cuts. You may think

Wales is benefiting from the European Union and that must be a

source of comfort to the Welsh finance minister. The position was

made clear recently on wheels and Europe. Anybody who suggests Wales

should leave the EU is not acting in Wales's best interests. The first

Minister speaking they are but all that euro sentiment might not be in

line with public opinion in Wales. In our exclusive Paul, we asked

whether they were better off in or out of Europe. Before we reveal the

answers, a quick reminder that since 2000 Wales has twice been the

beneficiary of structural funds to the tune of ?3.4 billion. That has

gone into community projects and helping businesses and we have

qualified for another ?2 billion from Europe from 2014 until 2020,

but that is making little impression on the people of Wales because 45%

of people seem to think we are worse off. One of the areas that gets the

most money is one of the least enthusiastic, because 57% of people

in Merthyr Tydfil think we would be better off outside of it. What are

those negative responses based on? The mounting of Euro cash or the way

it is being spent by the Welsh government? I think Paul's can come

and go and we are at a time when people are asking what is happening

to our economy. --polls. I have been out and about all summer talking to

people about the benefits of Europe and the lot of people do not know

what the have been. Is it because you are not getting the message

across? It has to come across much more clearly and it is about those

people we have gotten to work again and have gained qualifications. We

have more than 450 firms that have come from member states of the EU to

Wales and have provided thousands of jobs. Our message is that we are in

Europe and have benefited from time they think Wales is stronger for in

Europe. Are there are other reasons why people may be sceptical, that we

have received a huge amount of money over ten years ago, but it was not

used in the right way or people did not see that it was resulting in job

creation or infrastructure. In a sense, that money was frittered away

and people do not see the benefits. I would charge against that because

it was 14 years ago that we started up. Structural funds are the funding

that helps with the infrastructure. Was it well spent? The point is that

the funding, we had to match that. Was it well spent? We spent that

money on jobs and growth but we learned lessons from that so the

next round that we have just finished, fewer projects. 3000 in

the first round and the hundred in the second. If you go to people in

Brussels, they feel we have spent the money wisely, but we have been

hit by the 2008 financial crash and it was very difficult as we were

creating those jobs to recover from that. Your colleagues said in June,

we have to be far more focused on the use of structural funds this

time, with the lot more engagement the private sector. We cannot have

pet projects with hundreds of partners, we need strategic

projects. FUD code that, you made the better of a hash of the last

lots or will you do that this time. -- if you decode. Would you agree

with all that? We are working closely to make sure the next round

as well focused and we have a review carried out to look at ways we can

be more focused. Let's go back to see who has benefited. 6000 new jobs

than 150,000 young people gaining qualifications. You can see jobs and

roads and various things that have had European funding. I am not

holding you personally responsible for those decisions made at that

time before you weren't this job, but for ?3.4 billion, the thousands

of jobs may not seem a good return. That includes Welsh government

funding in terms of our priority is to make sure businesses and the

economy recovers as a result of this. We have to focus on the fact

that we will take a long time to recover from the decimation of our

coal and steel industries and it will take time. The slowest recovery

from a recession ever that we are living through. Is this going to be

used in a way that is noticeable. Will it allow you to upgrade the M4

and do things people will see as a benefit. My draft budget last week,

which was very tough with the cuts from the UK government, included a

metro system that would really drive the economy and help the valleys and

people coming down from the valleys to work in Cardiff. What is the

timescale? ?62 million of the money last week, which we can match with

European structural funds. If all goes well, that will from January.

These are the backbone projects. When will this get up and running?

You have to start on the first phase which I announced last week and that

is about how we make sure we can help people get back into work and

help our small and medium-sized enterprises to be competitive. Also

next time, it is about tackling poverty and every young person

between 16 and 25 who is unemployed is being offered a job by the Welsh

government. I must ask you as well about a feud predictions you made.

You called this a tough budget with big implications. One or two local

figures are seeing this will undermine local authorities very

seriously and could call into question the financial viability of

some of these authorities. We have been cushioning local government for

the last three years and the cuts in England have been devastating. We

felt the local government had to have time to prepare for what we

knew would be tougher budgets. It is no surprise to them and we have done

all we can to get money to local services. More money into education

and transport and roads and more money... Your messages for them to

sort out their priorities? We will get through these times which we are

living through because of austerity measures from the UK government.

The finance minister speaking to me earlier. Those changes in spending

power throughout Wales are forcing local authorities to make difficult

sessions. Health and education are the priorities but cultural services

are often among the first to suffer. We will be speaking to John McGrath

from National Theatre Wales in a minute but first, a look at why the

arts are of vital importance in a community.

This theatre has always seemed like a part of me. Eminent and

dominating, it looms large where it has stood for over 100 years but

institutions like this could be under threat. To celebrate the

centenary, National Theatre Wales are taking up residence here in

October and I will be staging my first play here. I am tremendously

proud to be a part of this legacy. It was originally built by miners

who contributed money from your wages. A concert hall and theatre, a

lecture hall and library, it was part of the collective effort to

improve their lot and enrich the area. These workers Institute still

form the focal point of many communities in the south Wales

valleys. They represent the greatest gift to us all. The miners were not

happy to be defined by their occupation and strove to be creative

and well rounded and passionate individuals. I often wish we could

speak into the ears of the dead the gratitude owed to them and their

life. This is the legacy we must fiercely defend. No more than ever

we have to make our voices heard in defence of arts and communities and

as cuts become more severe that is the art that bear the brunt. In

2010, the arts Council and Wales announced it would withdraw funding

from 22 organisations. One year later, five of these has closed. --

had closed. This is barely the beginning and there are claims the

cuts made so far to local authority budgets are nothing but a brilliant.

-- prelude. Earlier this month, Cardiff Council and those it would

withdraw even more funding putting more companies at risk. When placed

alongside health, education and the economy, vociferous defence of the

arts can seem trivial but to try to organise our lives into discrete

categories is to miss the point. The arts have a vital contribution to

make in all of these areas. Without this, every facet of our lives would

be cooler. If it sounds as though I am taking this personally, I do. I

grew up here as part of the working class community and there could be a

generation of young people that grew up with a severe deficit of this

nourishment. The legacy of the miners could truly be lost.

A very clear message they Elan joining me now there's John McGrath.

A warning, not just a message, a warning that we are in danger of

losing something very valuable. Is that overstating it? It is important

to have a warning. These are difficult times for everybody but we

all want to be creative and rounded individuals and the arts is a part

of that. The message from the miners is that it is worth putting money

into cultural life because it feeds all of us. There was a list of

closure is already in Wales. Is it your sense that more will fall in

the year ahead and as there are more that can be done to intervene?

Letters all up for grabs at the moment. These are difficult times

and neither the Welsh government nor local authorities have complete

control over the amount of money to shear around so we have to work

together. Arts organisations will have to work hard to make sure they

are reaching everybody they cancel we will have to work harder than

ever. It is really important we put the message is that art and culture

is an important part of life. Do you have any sympathy at all with the

message from the Welsh government that arts organisations could be

lean and more efficient and even more productive? It is not all about

safeguarding the amount of money. We all have to be working all of the

time to make sure we are reaching people and they are still plenty of

people out there who do not feel that the arts are accessible to them

or creative for them and it is important we found that around. I

wonder about the international context given that you have worked

in the United States and elsewhere. Tell us about how you see the health

of the arts in Wales are right now and that broader context. One of the

things you learn from working abroad is how important the arts and

culture of the country as to how it is perceived. We were fortunate this

year to be asked to produce a new piece of work over in Tokyo

completely paid for by them, but that was a great opportunity for

people to hear about Wales and to talk about the history and culture

here and while that is an important part of life. It makes people want

to come here. It increases the reputation of the country. Do the

people who control the flow of money get that message? Do you think they

realise the value of the arts as you see it? The Welsh government has a

good track record and even in recent budgets, there's the sense that the

agony that they rounded individual is important, and that health and

education are of course at the centre of our needs, but thinking

about culture and how we love life and understand life through arts and

literature and drama is equally an important part of what we do. The

Welsh government has a good track record of putting that message out

there. We look forward to what the National Theatre has in store for us

but thank you for joining us. That is out for this week. If you

have any comments on the issues from tonight or anything else, please get

in touch. We are also Twitter. We will be back next Wednesday. Nos da.