:00:09. > :00:15.Tonight, cancer care in Wales, what you get depends on where you live.
:00:16. > :00:19.We will have some answers. Public spending in Wales under more
:00:20. > :00:24.pressure. Does it mean we value European funding more than ever? And
:00:25. > :00:31.one of Wales's top writers tells us there can never be an excuse for
:00:32. > :00:38.depriving young people of the opportunity for creative activity.
:00:39. > :00:47.Stay with us for The Wales Report. Good evening. It is good to be back
:00:48. > :00:51.in a new weekday slot with our chance to look at the problems of
:00:52. > :00:56.successes in Welsh life and question now that make decisions affecting us
:00:57. > :01:00.all. Tonight, a special investigation. You tell us this
:01:01. > :01:05.subject is important to you. Cancer care in Wales is a mixed story.
:01:06. > :01:08.There are some notable successes are some examples of world-class
:01:09. > :01:13.treatment, but the way people can access specialist treatments in the
:01:14. > :01:17.NHS is neither consistent nor straightforward. It depends largely
:01:18. > :01:22.on where you live. Some people are lucky. Some people are desperately
:01:23. > :01:27.unlucky. There are very loud calls for the system to change. Helen
:01:28. > :01:36.Callaghan brings us the stories of two Welsh cancer patients and two
:01:37. > :01:42.very different experiences. I always make them a cake. These
:01:43. > :01:45.friends were diagnosed with the same advanced cancer but their NHS
:01:46. > :01:49.treatment could not have been different. A chakra more different.
:01:50. > :01:57.Both were told a drug could prolong their lives but only Jean got it in
:01:58. > :02:07.Wales. Annie did not. How can it be fair, they both ask? Gene from Neath
:02:08. > :02:11.had advanced ovarian cancer. As part of her treatment, she was given a
:02:12. > :02:16.drug which can halt the progression of the disease by up to four months.
:02:17. > :02:24.After surgery, other surgery and avastin, she is in remission. The
:02:25. > :02:29.first apartment I had with the oncologist, I saw the registrar and
:02:30. > :02:34.he went through the treatment -- the first appointment. He said, you will
:02:35. > :02:39.be having avastin. I think it is phenomenal we get it and I don't see
:02:40. > :02:45.what other health boards cannot give it as well. Annie lives in Cardiff,
:02:46. > :02:53.40 miles away from Jean. She was told that of -- that avastin could
:02:54. > :03:01.help but she would not be able to have it. I could have been another
:03:02. > :03:07.six months, possibly longer, and I would not have to endure
:03:08. > :03:15.chemotherapy again because avastin gives you a longer remission.
:03:16. > :03:21.Although it has known benefits, those who decide which offers best
:03:22. > :03:27.value for money for the NHS think it is too expensive. It is not
:03:28. > :03:31.routinely given out on the NHS. In England, there is a cancer drugs
:03:32. > :03:35.fund which pays for medicines that are not normally available from the
:03:36. > :03:40.health service. To take advantage of that fund, Annie has gone to
:03:41. > :03:44.shocking lengths. She is travelling back and forth to London where she
:03:45. > :03:49.has rented a house, swapping the Welsh NHS for the English NHS,
:03:50. > :03:54.giving her access to the cancer drugs fund and the treatment she
:03:55. > :03:58.wanted. It involves considerable travel, expense and some distress
:03:59. > :04:01.because if you are a cancer patient, it is not the best thing in
:04:02. > :04:08.the world, to be travelling back and forth. But I am getting access to
:04:09. > :04:16.the cancer drug fund and it gives me hope. Jean and her husband feel
:04:17. > :04:19.guilty. She got the drug just by virtue of where she happens to live.
:04:20. > :04:26.I would not like to have to fight for it. I do not know how Annie is
:04:27. > :04:29.doing it. I would not like to have moved house just to get the
:04:30. > :04:37.treatment. I think everybody deserves it. It has given me my life
:04:38. > :04:43.back. They are among hundreds of patients
:04:44. > :04:45.across Wales struggling to get an unapproved cancer drugs and
:04:46. > :04:51.struggling to understand why it access to them is a postcode
:04:52. > :04:54.lottery. They want to know who makes these life changing decisions. Under
:04:55. > :05:00.the current system, any patient living anywhere in Wales trying to
:05:01. > :05:02.get access to an unapproved drug or procedure by making an individual
:05:03. > :05:07.patient funding requests. In essence, they have to try and
:05:08. > :05:11.convince a panel that there are cases exceptional. There are seven
:05:12. > :05:16.of those panels, one for each health board area. They consist of medical
:05:17. > :05:20.professionals and one lay person. Most members are appointed by the
:05:21. > :05:24.health board and some by the community health Council. All of the
:05:25. > :05:28.panels follow the same guidelines, but there is room for
:05:29. > :05:31.interpretation. They consider benefits and cost implications.
:05:32. > :05:35.Since there are seven of them, many are asking, can there ever be
:05:36. > :05:43.consistency right across Wales? There is not all Wales guidance
:05:44. > :05:45.issued from the Welsh government on how an individual patient funding
:05:46. > :05:51.request should be considered. You would expect the guidance to be
:05:52. > :05:55.followed and there to be some consistency in the type of evidence,
:05:56. > :05:59.the type of people involved in making those decisions. You would
:06:00. > :06:05.expect some consistency according to the guidance. However, our research
:06:06. > :06:11.shows that some funding panels say now much more than others. Our
:06:12. > :06:16.exclusive figures show a huge variation when it comes to giving
:06:17. > :06:22.out unapproved cancer drugs. There is a 20% difference in approval
:06:23. > :06:25.rates. Of the six health boards which responded, Cardiff and Vale's
:06:26. > :06:31.panel were most likely to say no. They only approved a third of
:06:32. > :06:39.request. Other boards were in the middle.
:06:40. > :06:49.Those decisions really count. After one panel approved all avastin
:06:50. > :06:53.request for advanced ovarian cancer last year, the health board decided
:06:54. > :06:58.to change their policy. Now patients with that type and stage of cancer
:06:59. > :07:02.living in the area can get avastin without having to apply for it. At
:07:03. > :07:07.the moment, they are the only health board in Wales where this happens.
:07:08. > :07:14.They have called for a review of the drug's use on the NHS. For the
:07:15. > :07:19.friends who have had such different experiences, that review cannot come
:07:20. > :07:25.a moment too soon. I feel I am very lucky being here because the health
:07:26. > :07:30.authority is funding it for us. When I see a friend of mine who cannot
:07:31. > :07:36.get it, who has to relocate, I feel quite cross. I feel it is a postcode
:07:37. > :07:40.lottery. When I was diagnosed with cancer, I did not understand all of
:07:41. > :07:44.this. Patients trust that people are doing the best for them, that their
:07:45. > :07:49.politicians are doing the best and that they will be treated fairly. I
:07:50. > :07:56.now have evidence that there is no fair treatment.
:07:57. > :07:59.With me is a doctor who is a chief medical officer for Wales. Thank you
:08:00. > :08:03.for coming to talk to us. No one watching that will be unaffected
:08:04. > :08:07.because there are very powerful emotions involved. It is a strong
:08:08. > :08:13.verdict from one of the patients. There is no fairness in this system
:08:14. > :08:16.in Wales. Is she right to say that? I am very concerned to hear the
:08:17. > :08:22.story of what has happened. Our whole approach is to use the
:08:23. > :08:26.guidance, the best evidence we have, to make as many drugs as possible
:08:27. > :08:33.available on the NHS to everyone who needs it in Wales. The policy is a
:08:34. > :08:38.couple of years old and we have been looking at it to see if we can
:08:39. > :08:41.improve it. Some of the things are consistency, transparency and the
:08:42. > :08:48.feedback from very difficult stories, we need to look at this and
:08:49. > :08:52.make sure that we have got it better developed so that we are more
:08:53. > :08:58.consistent. The evidence seems to be that in considering individual cases
:08:59. > :09:02.different panels attach different weights and importance to different
:09:03. > :09:05.factors. It is the failure to have a consistent approach that is
:09:06. > :09:10.distressing people. How can you get to a position where you can say
:09:11. > :09:15.confidently that in Wales we have a system which is fair to everyone
:09:16. > :09:18.regardless of where they live? This policy was introduced as an all
:09:19. > :09:23.Wales policy and we have looked at it this year and seeing that we need
:09:24. > :09:28.to make improvements. This confirms it from the patient perspective as
:09:29. > :09:33.well. We'll so have a review of how to bring in drugs for rare
:09:34. > :09:43.conditions generally. That will be coming forward in the next few
:09:44. > :09:46.weeks. I am quite clear that we must continue to develop a fair approach,
:09:47. > :09:50.a transparent approach and that is what we are looking to do.
:09:51. > :09:56.Interesting to see the figures. I was surprised to see the difference
:09:57. > :10:01.in the rejection rates, if you like, or in the acceptance rates. In
:10:02. > :10:05.Cardiff, a bit of a task to convince the panels that you need some of the
:10:06. > :10:09.drugs. Some of our viewers will have noticed that one of the health
:10:10. > :10:12.boards was not on the list because of reasons best known to them they
:10:13. > :10:22.did not respond to the request for data. But another health board,
:10:23. > :10:25.53%. 20% of a margin there. Even allowing for different individuals
:10:26. > :10:30.and different panels, that has got to be something that you have got to
:10:31. > :10:34.address seriously. The point of the system is that it is for exceptional
:10:35. > :10:38.cases so there will be a difference. But you are right. We
:10:39. > :10:43.need to make sure that the differences are not due to things
:10:44. > :10:50.that are not being applied consistently. Or people obsessed
:10:51. > :10:54.with cost. Is it fair for me to say that? People considering not
:10:55. > :10:59.clinical need but the costs involved. Clearly costs are a factor
:11:00. > :11:04.but are some people attaching too much weight to cost? We have to look
:11:05. > :11:08.at it in the round. We spend more per head on cancer in Wales than
:11:09. > :11:15.elsewhere. We have to make sure we are preventing cancer, screening for
:11:16. > :11:18.cancer and treating a whole range of cancers as early as possible. Health
:11:19. > :11:23.boards are charged with making the choices across all of that. They
:11:24. > :11:28.have to balance those issues. It is a very difficult judgement. Coming
:11:29. > :11:33.down to individual cases. But I am clear that we need to make sure that
:11:34. > :11:38.there is objectivity, fairness and transparency in how those decisions
:11:39. > :11:41.are made. You will not be surprise, nobody watching will be surprise,
:11:42. > :11:46.when we say that lots of people talking to us have said that it
:11:47. > :11:49.proves that the fact that England has a cancer drugs fund, it puts
:11:50. > :11:54.them at an advantage. I know there are arguments either way. But when
:11:55. > :11:58.you see the fact that someone is making a huge effort to travel
:11:59. > :12:01.thousands of miles over many months to try to access treatment not
:12:02. > :12:08.available here, does it strengthen the case for a fund as exists in
:12:09. > :12:13.England? As you know, we have looked at how we prioritise the choices we
:12:14. > :12:19.are making. A fund for one type of drug means that other people with
:12:20. > :12:22.rare diseases, conditions, they are not included in that. We have this
:12:23. > :12:29.process of considering individual requests. What we are hearing is
:12:30. > :12:35.feedback that we need to improve the consistency. But not move to a
:12:36. > :12:39.fund? A fund limits it and does not consider all of the other treatments
:12:40. > :12:43.available for all sorts of other conditions. People do not have faith
:12:44. > :12:47.and trust in this process, they do not think they are getting a fair
:12:48. > :12:51.hearing from the panels, that is very damaging to the credibility of
:12:52. > :12:55.the service you are providing. For me, that is at the heart of this.
:12:56. > :13:00.There are choices to be made and we have to be fair to everybody in
:13:01. > :13:04.Wales. You are saying to people that changes are being considered and you
:13:05. > :13:08.are clearly hinting that changes will be made to the system as it
:13:09. > :13:12.currently stands. I want to make sure that I can hand on heart say
:13:13. > :13:15.that it is a fair and transparent process and we are doing the best we
:13:16. > :13:24.possibly can for everybody in Wales. Thank you.
:13:25. > :13:28.Yet again the Welsh government has unveiled the toughest budget since
:13:29. > :13:32.devolution but this time it has prompted local authorities to
:13:33. > :13:37.announce what they are calling record spending cuts. You may think
:13:38. > :13:42.Wales is benefiting from the European Union and that must be a
:13:43. > :13:49.source of comfort to the Welsh finance minister. The position was
:13:50. > :13:57.made clear recently on wheels and Europe. Anybody who suggests Wales
:13:58. > :14:04.should leave the EU is not acting in Wales's best interests. The first
:14:05. > :14:08.Minister speaking they are but all that euro sentiment might not be in
:14:09. > :14:13.line with public opinion in Wales. In our exclusive Paul, we asked
:14:14. > :14:21.whether they were better off in or out of Europe. Before we reveal the
:14:22. > :14:26.answers, a quick reminder that since 2000 Wales has twice been the
:14:27. > :14:32.beneficiary of structural funds to the tune of ?3.4 billion. That has
:14:33. > :14:36.gone into community projects and helping businesses and we have
:14:37. > :14:44.qualified for another ?2 billion from Europe from 2014 until 2020,
:14:45. > :14:48.but that is making little impression on the people of Wales because 45%
:14:49. > :14:56.of people seem to think we are worse off. One of the areas that gets the
:14:57. > :15:04.most money is one of the least enthusiastic, because 57% of people
:15:05. > :15:14.in Merthyr Tydfil think we would be better off outside of it. What are
:15:15. > :15:18.those negative responses based on? The mounting of Euro cash or the way
:15:19. > :15:28.it is being spent by the Welsh government? I think Paul's can come
:15:29. > :15:34.and go and we are at a time when people are asking what is happening
:15:35. > :15:39.to our economy. --polls. I have been out and about all summer talking to
:15:40. > :15:45.people about the benefits of Europe and the lot of people do not know
:15:46. > :15:50.what the have been. Is it because you are not getting the message
:15:51. > :15:54.across? It has to come across much more clearly and it is about those
:15:55. > :16:01.people we have gotten to work again and have gained qualifications. We
:16:02. > :16:07.have more than 450 firms that have come from member states of the EU to
:16:08. > :16:13.Wales and have provided thousands of jobs. Our message is that we are in
:16:14. > :16:19.Europe and have benefited from time they think Wales is stronger for in
:16:20. > :16:24.Europe. Are there are other reasons why people may be sceptical, that we
:16:25. > :16:30.have received a huge amount of money over ten years ago, but it was not
:16:31. > :16:35.used in the right way or people did not see that it was resulting in job
:16:36. > :16:44.creation or infrastructure. In a sense, that money was frittered away
:16:45. > :16:53.and people do not see the benefits. I would charge against that because
:16:54. > :16:58.it was 14 years ago that we started up. Structural funds are the funding
:16:59. > :17:07.that helps with the infrastructure. Was it well spent? The point is that
:17:08. > :17:14.the funding, we had to match that. Was it well spent? We spent that
:17:15. > :17:17.money on jobs and growth but we learned lessons from that so the
:17:18. > :17:24.next round that we have just finished, fewer projects. 3000 in
:17:25. > :17:29.the first round and the hundred in the second. If you go to people in
:17:30. > :17:37.Brussels, they feel we have spent the money wisely, but we have been
:17:38. > :17:41.hit by the 2008 financial crash and it was very difficult as we were
:17:42. > :17:49.creating those jobs to recover from that. Your colleagues said in June,
:17:50. > :17:54.we have to be far more focused on the use of structural funds this
:17:55. > :18:00.time, with the lot more engagement the private sector. We cannot have
:18:01. > :18:07.pet projects with hundreds of partners, we need strategic
:18:08. > :18:13.projects. FUD code that, you made the better of a hash of the last
:18:14. > :18:21.lots or will you do that this time. -- if you decode. Would you agree
:18:22. > :18:26.with all that? We are working closely to make sure the next round
:18:27. > :18:32.as well focused and we have a review carried out to look at ways we can
:18:33. > :18:39.be more focused. Let's go back to see who has benefited. 6000 new jobs
:18:40. > :18:48.than 150,000 young people gaining qualifications. You can see jobs and
:18:49. > :18:54.roads and various things that have had European funding. I am not
:18:55. > :19:01.holding you personally responsible for those decisions made at that
:19:02. > :19:07.time before you weren't this job, but for ?3.4 billion, the thousands
:19:08. > :19:10.of jobs may not seem a good return. That includes Welsh government
:19:11. > :19:15.funding in terms of our priority is to make sure businesses and the
:19:16. > :19:21.economy recovers as a result of this. We have to focus on the fact
:19:22. > :19:28.that we will take a long time to recover from the decimation of our
:19:29. > :19:32.coal and steel industries and it will take time. The slowest recovery
:19:33. > :19:40.from a recession ever that we are living through. Is this going to be
:19:41. > :19:50.used in a way that is noticeable. Will it allow you to upgrade the M4
:19:51. > :19:57.and do things people will see as a benefit. My draft budget last week,
:19:58. > :20:02.which was very tough with the cuts from the UK government, included a
:20:03. > :20:08.metro system that would really drive the economy and help the valleys and
:20:09. > :20:17.people coming down from the valleys to work in Cardiff. What is the
:20:18. > :20:23.timescale? ?62 million of the money last week, which we can match with
:20:24. > :20:29.European structural funds. If all goes well, that will from January.
:20:30. > :20:36.These are the backbone projects. When will this get up and running?
:20:37. > :20:41.You have to start on the first phase which I announced last week and that
:20:42. > :20:47.is about how we make sure we can help people get back into work and
:20:48. > :20:55.help our small and medium-sized enterprises to be competitive. Also
:20:56. > :21:01.next time, it is about tackling poverty and every young person
:21:02. > :21:07.between 16 and 25 who is unemployed is being offered a job by the Welsh
:21:08. > :21:14.government. I must ask you as well about a feud predictions you made.
:21:15. > :21:18.You called this a tough budget with big implications. One or two local
:21:19. > :21:25.figures are seeing this will undermine local authorities very
:21:26. > :21:31.seriously and could call into question the financial viability of
:21:32. > :21:35.some of these authorities. We have been cushioning local government for
:21:36. > :21:40.the last three years and the cuts in England have been devastating. We
:21:41. > :21:46.felt the local government had to have time to prepare for what we
:21:47. > :21:49.knew would be tougher budgets. It is no surprise to them and we have done
:21:50. > :21:56.all we can to get money to local services. More money into education
:21:57. > :22:04.and transport and roads and more money... Your messages for them to
:22:05. > :22:08.sort out their priorities? We will get through these times which we are
:22:09. > :22:16.living through because of austerity measures from the UK government.
:22:17. > :22:20.The finance minister speaking to me earlier. Those changes in spending
:22:21. > :22:25.power throughout Wales are forcing local authorities to make difficult
:22:26. > :22:31.sessions. Health and education are the priorities but cultural services
:22:32. > :22:35.are often among the first to suffer. We will be speaking to John McGrath
:22:36. > :22:43.from National Theatre Wales in a minute but first, a look at why the
:22:44. > :22:54.arts are of vital importance in a community.
:22:55. > :23:00.This theatre has always seemed like a part of me. Eminent and
:23:01. > :23:03.dominating, it looms large where it has stood for over 100 years but
:23:04. > :23:09.institutions like this could be under threat. To celebrate the
:23:10. > :23:13.centenary, National Theatre Wales are taking up residence here in
:23:14. > :23:20.October and I will be staging my first play here. I am tremendously
:23:21. > :23:23.proud to be a part of this legacy. It was originally built by miners
:23:24. > :23:31.who contributed money from your wages. A concert hall and theatre, a
:23:32. > :23:35.lecture hall and library, it was part of the collective effort to
:23:36. > :23:45.improve their lot and enrich the area. These workers Institute still
:23:46. > :23:48.form the focal point of many communities in the south Wales
:23:49. > :23:54.valleys. They represent the greatest gift to us all. The miners were not
:23:55. > :23:57.happy to be defined by their occupation and strove to be creative
:23:58. > :24:05.and well rounded and passionate individuals. I often wish we could
:24:06. > :24:09.speak into the ears of the dead the gratitude owed to them and their
:24:10. > :24:16.life. This is the legacy we must fiercely defend. No more than ever
:24:17. > :24:20.we have to make our voices heard in defence of arts and communities and
:24:21. > :24:26.as cuts become more severe that is the art that bear the brunt. In
:24:27. > :24:31.2010, the arts Council and Wales announced it would withdraw funding
:24:32. > :24:40.from 22 organisations. One year later, five of these has closed. --
:24:41. > :24:44.had closed. This is barely the beginning and there are claims the
:24:45. > :24:53.cuts made so far to local authority budgets are nothing but a brilliant.
:24:54. > :24:57.-- prelude. Earlier this month, Cardiff Council and those it would
:24:58. > :25:04.withdraw even more funding putting more companies at risk. When placed
:25:05. > :25:10.alongside health, education and the economy, vociferous defence of the
:25:11. > :25:13.arts can seem trivial but to try to organise our lives into discrete
:25:14. > :25:21.categories is to miss the point. The arts have a vital contribution to
:25:22. > :25:26.make in all of these areas. Without this, every facet of our lives would
:25:27. > :25:32.be cooler. If it sounds as though I am taking this personally, I do. I
:25:33. > :25:35.grew up here as part of the working class community and there could be a
:25:36. > :25:40.generation of young people that grew up with a severe deficit of this
:25:41. > :25:47.nourishment. The legacy of the miners could truly be lost.
:25:48. > :25:56.A very clear message they Elan joining me now there's John McGrath.
:25:57. > :26:00.A warning, not just a message, a warning that we are in danger of
:26:01. > :26:07.losing something very valuable. Is that overstating it? It is important
:26:08. > :26:11.to have a warning. These are difficult times for everybody but we
:26:12. > :26:17.all want to be creative and rounded individuals and the arts is a part
:26:18. > :26:22.of that. The message from the miners is that it is worth putting money
:26:23. > :26:30.into cultural life because it feeds all of us. There was a list of
:26:31. > :26:34.closure is already in Wales. Is it your sense that more will fall in
:26:35. > :26:38.the year ahead and as there are more that can be done to intervene?
:26:39. > :26:44.Letters all up for grabs at the moment. These are difficult times
:26:45. > :26:48.and neither the Welsh government nor local authorities have complete
:26:49. > :26:53.control over the amount of money to shear around so we have to work
:26:54. > :26:56.together. Arts organisations will have to work hard to make sure they
:26:57. > :27:01.are reaching everybody they cancel we will have to work harder than
:27:02. > :27:07.ever. It is really important we put the message is that art and culture
:27:08. > :27:12.is an important part of life. Do you have any sympathy at all with the
:27:13. > :27:15.message from the Welsh government that arts organisations could be
:27:16. > :27:22.lean and more efficient and even more productive? It is not all about
:27:23. > :27:26.safeguarding the amount of money. We all have to be working all of the
:27:27. > :27:32.time to make sure we are reaching people and they are still plenty of
:27:33. > :27:37.people out there who do not feel that the arts are accessible to them
:27:38. > :27:41.or creative for them and it is important we found that around. I
:27:42. > :27:47.wonder about the international context given that you have worked
:27:48. > :27:51.in the United States and elsewhere. Tell us about how you see the health
:27:52. > :27:57.of the arts in Wales are right now and that broader context. One of the
:27:58. > :28:00.things you learn from working abroad is how important the arts and
:28:01. > :28:05.culture of the country as to how it is perceived. We were fortunate this
:28:06. > :28:10.year to be asked to produce a new piece of work over in Tokyo
:28:11. > :28:15.completely paid for by them, but that was a great opportunity for
:28:16. > :28:18.people to hear about Wales and to talk about the history and culture
:28:19. > :28:25.here and while that is an important part of life. It makes people want
:28:26. > :28:32.to come here. It increases the reputation of the country. Do the
:28:33. > :28:38.people who control the flow of money get that message? Do you think they
:28:39. > :28:46.realise the value of the arts as you see it? The Welsh government has a
:28:47. > :28:53.good track record and even in recent budgets, there's the sense that the
:28:54. > :28:57.agony that they rounded individual is important, and that health and
:28:58. > :29:02.education are of course at the centre of our needs, but thinking
:29:03. > :29:08.about culture and how we love life and understand life through arts and
:29:09. > :29:13.literature and drama is equally an important part of what we do. The
:29:14. > :29:18.Welsh government has a good track record of putting that message out
:29:19. > :29:22.there. We look forward to what the National Theatre has in store for us
:29:23. > :29:27.but thank you for joining us. That is out for this week. If you
:29:28. > :29:38.have any comments on the issues from tonight or anything else, please get
:29:39. > :29:43.in touch. We are also Twitter. We will be back next Wednesday. Nos da.