16/10/2013 The Wales Report


Huw Edwards takes a look at issues that matter in Wales and Helen Callaghan investigates the reality of living in modern Wales.

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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.


Huw Edwards asks the questions that matter to you about your job, your health, your future. Confronting decision makers with the consequences of their choices and each week Helen Callaghan will be investigating the reality of living in modern Wales.

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