04/11/2015 The Wales Report


A look at access to cancer drugs in Wales. Does where you live affect what you get? And is there enough scrutiny of the Welsh Government and Assembly members?

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Calls for better access in Wales to new cancer drugs - does


Keeping an eye on the decision makers.


Do we really know enough about what the Welsh Government and


The Welsh Government and the national assembly are too


self-satisfied and too smug in terms of what they perceive as openness


and transparency. They could go a lot, lot further.


And tackling extremism - we look at the work being


done within Muslim communities in Wales.


Good evening, and welcome to The Wales Report.


It's estimated that 130,000 people in Wales are living with cancer -


it's a figure which is expected to rise.


A survey being launched this Autumn reports inconsistent access to new


cancer treatments in Wales, with concerns that there's huge


disparity within Wales and across the UK when it comes to


We'll be discussing that in a moment, and you can join in the


conservation on social media tonight using the hashtag thewalesreport.


But first, let's hear from Annie Mullholland.


We have been following her story for some time here on The Wales Report.


I have really an cancer and it is an enjoyable cancer. I spoke to The


Wales Report in 2013 and I just about registered with a GP in London


to access my NHS services at and other address in England, and I was


on request, really, to get a drug I was denied because I lived in


Cardiff. I was facing barriers so, for joining the trial, for accessing


a drug I could have, and I couldn't see how I would keep myself a life


without help. I felt I think the worst I have ever felt in my life


and I felt so angry because other people, other women, were getting


some treatments and I was not and I felt that was on fair -- keep myself


alive. Because I felt discriminated against for the first time in my


life and the horror of that feeling, being discriminated against


by your NHS, it was the worst feeling of my life and made me feel


I didn't want to fight as well, I might as well die, because no one


would help me live. I would just like to see fairness across the


United Kingdom and unfortunately the provision for all very an cancer is


grossly unfair. There remains a disparity of access to drugs in


Wales. It is very poor and the worst thing is there is no clear criteria


by which oncologists or patients know in advance what their treatment


will be. If I could say something I would say that if every patient in


Wales was as discerning as I am they would be in England banging on the


further treatment or they would be demanding fairer access to.


I'm joined now by Dr Richard Greville,


the Wales Director of the Association


of the British Pharmaceutical Industry


and Plaid Cymru's health spokesperson Elin Jones.


Doctor Greville, you have this report out and I know you can speak


about that but what are your views on disparity to access to drugs in


Wales. There is disparity in Wales, between Wales and the rest of the


UK. Certainly we run a survey with YouGov in conjunction with the NHS


Confederation in Wales and from that serve the it was interesting to note


that 80% of the people surveyed, they thought that more needed to be


done in terms of improving access to medicine. Just explain why there is


this disparity across Wales, because it is down to the individual health


boards, isn't it? It is down to individual health boards in many


ways. There are a national assessments of medicines in Wales


but below that there are levels of funding decisions that can be made


at a local level. We are well aware the Welsh Government is working to


consolidate that approach and is on the verge of making an announcement


of a new process and we do hope that new one Wales process will be useful


in terms of limiting or minimising this disparity. Elin Jones, the


Welsh Government would argue that spending perhaps -- per head, no one


is at a record high and they are doing what they can and have opted


not to go for the Cancer Drugs Fund. The current system of access to new


drugs and treatments is dysfunctional in Wales and the


experience of Annie Mullholland clearly shows that as does the


campaign in Bangor and the inconsistency of funding decisions.


You would make all of these available, would you? Avastin would


be free to everybody in Wales? I think the first thing to tackle in


Wales is to ensure we do not have a postcode lottery. We have people


moving from one health board area to another in order to access drugs in


Wales and surely that should not be a system. For 3 million people


surely we can have one national system in Wales with transparency


and equality for the patients, in being able to access or not, as the


case may be, the drugs. The Welsh Government has refused this idea of


a Cancer Drugs Fund and in England you could argue it is being wound


down as we see further treatment is today being removed again. As the


Welsh Government correct not to go down that path, Richard Greville? We


have welcomed the number of patients treated with the Cancer Drugs Fund


in England but we were never a great advocate of the approach taken. We


think it requires a more holistic approach. It is not just cancer


medicines with a low and slow uptake within the UK and we think a more


holistic answer would be more appropriate for the uptake of


medicines as a whole. You are in the pharmaceutical industry. What about


the price of these drugs? A lot of them are extortionate. Is it not


down to the industry to lower that price? Indeed it is. The cost of


developing medicines increases as time goes on. That is almost


exponential on occasion, however we recognise that those costs need to


be considered and in fact there is currently a pricing scheme across


the UK that means that there is not an increased expenditure on


medicines in the UK. Any increase in expenditure is now covered by a


rebate from the pharmaceutical companies back to the Department of


Health in the UK. Is it down to the drug funds, Elin Jones? Tax rebate


that has just been referred to means that there is an allocation to Wales


of around ?50 million this year -- that rebate. It is currently not


ring fenced by the Welsh Government for access of patients to new drugs


and treatments and I think it should be ring fenced for that purpose.


That is the reason it was there. We should not have decisions based


purely on cost when it comes to access to treatments. There are an


awful lot of statistics when it comes to cancer but one that stands


out from the Macmillan charity is that by the end of next year 50


people per day it is expected, in Wales, will be diagnosed with


cancer. Can Wales Corp? There will be people needing very specialist


treatment and some needing more mainstream treatment -- can Wales


cope. We will need that to be in the decisions taken by health boards in


conditions. Black thank you both, very much. -- thank you both. It is


ultimately the health boards making these life and death decisions.


The ability to scrutinise people with power


is the mainstay of a vibrant democracy.


So should we be worried that a handful of politicians


and commentators have expressed concerns that scrutiny in Wales


is being eroded by the decisions of the Welsh Government


and some of the systems of the Welsh Assembly?


Who said it was built as a beacon of Wales's new democracy, a metaphor in


Slate, wood and glass for the age of devolution. There is glass


everywhere in this building, the exterior walls, the viewing gallery,


the committee rooms, a design choice with a message. In the corridors of


power, daylight is the best disinfectant. Transparency,


accountability, scrutiny, the ability to see, understand and


question those whose decisions affect your life. These are the


things that keep a democracy healthy. But recent events have led


some commentators to voice their concerns that our democracy is


ailing. I've had the pleasure and privilege


of watching the National Assembly for Wales since its inception back


in 1999, and I have to say I have found the fourth Assembly to be


the most closed and the least A tone has been set whereby


transparency has become more of a tick box exercise rather than


something that is vibrant One of Labour's on backbenchers


criticised what she called an unhealthy culture at the top of


Welsh Government. Jenny Rathbone was sacked from the chairmanship of the


committee after criticising the Government. It was not a scrutiny


committee and it was said she breached collective responsibility,


but opposition parties are not buying that explanation. There is an


honourable tradition of backbenchers from all parties in Westminster


being critical friends and that is an important part of the political


culture. We have never seen that develop in Wales, where Labour


backbenchers have, for the most part, been very reluctant to speak


out, and if they do have the temerity to speak out in the eyes of


their own Government, they are dealt with very harshly, and I think that


is a real shame. The committee system exists to interrogate


Government policy and scrutinise legislation among other things but


it is not just Labour who have sacked committee chairs who have


disagreed with them. The Conservatives and Plaid Cymru have


done so as well. I think there is too much power and patron edge in


the hands of the Labour Party. They have moved away from that system,


incidentally, Westminster and it is now a much more egalitarian system


with the best people for the jobs, actually, becoming the committee


chairs, and they are protected from losing those roles. If they happen


to fall out of favour with the party leadership. But if this use of


chairmanship Seppi Matic of a bigger problem? Success of reports into


hourss system of devolution reveals we do not have enough backbenchers


to properly scrutinise Government policy and legislation --


symptomatic of a bigger problem. We have got around 42 serving in a


whole range of committees. It means the vast majority of the 42 serve on


at least two committees and some on three. With all due respect to time


management, it is almost impossible to throw yourself into an effective


scrutiny role when you are being pulled from pillar to post and try


to understand and dig deep into the issues you are facing as a committee


member. And recently there has also been disquiet on what has, on the


face of it, been quite an arcane subject. The Welsh Governance Centre


it was... The reports provided the facts and analysis on which


ministers base their decisions. Hardly anyone ever read them and the


Government says pressure on resources meant it was streamlining


the system. The numbers game is not a credible explanation for this


because it is not of interest to a lot of ordinary citizens but people


who represent ordinary citizens, whether that is groups in civic


society or academics all obvious of any kind have the right to see the


trail as too why a ministerial decision has been made. And they


have thrown up some really interesting stories over the years.


Journalists have examined more deeply on the basis of having a


trigger from the ministerial report so I think the numbers game is not a


legitimate argument. I doubt it would save anything substantial in


terms of costs and the reality is, this has been a real opportunity for


shining a light at the rationale and the Trail by which a decision was


reached. And then there is the media. Obviously journalism should


scrutinise politicians and their decisions but when you compare the


media in Wales with their counterparts in England and


Scotland, the industry here seems weak, under resourced and lacking in


competition. For those who have spent their careers studying Welsh


politics and civil society, this is another illustration of how far we


still have to travel in developing a robust culture of scrutiny. I have


said very publicly I think there is a lot more to do to enhance the


scrutiny we have at all levels of Welsh politics and people make the


mistake of thinking we just talk about the scrutiny of the Welsh


government but I think we are talking about scrutiny in a much


broader way, our public bodies, what our MPs do, it is a pretty immature


cultural form of scrutiny that we have at the moment and, in my


opinion, that is because we have not really got to grips with the need to


have proper forensic and strategic critiques of everything we do


post-devolution. The Assembly, in many respects, encapsulates this. It


simply does not have the in-built culture of proper robust scrutiny in


everything it does. The building with its transparent glass walls is


a great home for Welsh lawmakers and it is a very popular visitor


attraction, but the Welsh government does not live there, it lives here


in the classicism of central Cardiff. You can't see much at all


of what is going on inside the building. Transparency,


accountability, scrutiny, these things are not considered by glass


walls, you have got to build them. The Welsh government and the


National Assembly are too self-satisfied and smoke in terms of


what they perceive openness and transparency is. They can go a lot


further. The minister who organises government business behind those


glass walls is Jane Hutt. Do you think the Welsh government


demonstrates a serious commitment to scrutiny? It is a priority to be


open and transparent and it is very ported, as you say, this is a very


test for devolution and we are open and transparent, that people know


what we are doing, that they cannot only through scrutiny but the public


can engage with us, which is why we publish all our cabinet papers, the


minutes for our papers, we have endless statements, scrutiny of us


in the chamber, but it really is to make sure that we are open and


people can question as and challenge us, and that is very important to a


vibrant democracy. In recent months, the decision reports are not being


published any more. A Labour backbencher has described an


unhealthy culture at the top of Welsh government. Recent evidence


would suggest otherwise. I think the issue about decision reports, as I


have said already, this was a particular thing that was done, not


many people looked at this decision. But isn't it about


transparency? We are trying to also, with very constrained public


finances, reduce bureaucracy and it is important to look at what we are


doing, is it effective, are we getting the message over? We are


using a lot more communication through social media, which is


important, but we can't just be through social media in gauging with


the press, in gauging with the community and people, and just as


the constituency AM as well as a minister, it is an absolute


responsibility that people can question and understand why we are


delivering on them. Is there any suggestion in that that you might


reconsider the decision? It does go back to perhaps one particular


procedure that we stopped. If you look at the decision reports of the


last six months before we did cease them, it was 0.5 per cent of the


website hits were about this decision report. But why is that the


relevant factor rather than being available to those who want to look


in more detail at the chain of decision-making over policy? I think


it is very important that we do publish the Cabinet papers but also


that we publish on our websites and evaluation of what we are doing. You


thought that was the case about ministerial decision reports,


otherwise they would never have been published in the first place. I


think it is very much in the context of trying to remove bureaucracy and


complex of the Indians of what we do, the process of government,


reaching out. We want to be open. Carwyn Jones is now running around


the country doing car wing Connects because people want to engage


correctly face-to-face. We have got to make sure that we are open to


accountable, we are... What about criticism from your own


backbenchers? There is a clear issue about government appointment for


their programme monitoring committee. When was that ever


applied to the chair of the committee? When has that ever


applied? That committee that the Welsh government appoints and I


think we have got to say that in terms, I have been in the Assembly


since the start, and a very line to be bench, as it should be, of


backbenchers, not just in terms of scrutiny but playing a key part


alongside the opposition. I think we have got to be open and


transparent, the First Minister, he has answered questions on this


point. But also we have to recognise that we have got a very committed


group, and it is a group, the largest group in the Assembly. We


are a minority Labour government but we have got a committed, loyal group


who were elected on a manifesto because they believe in Labour


values and playing usually important parts in committees, scrutinising


ministers, and I value that. I don't want to have a soft time in a


committee, I'd want to be challenged, I want to be scrutinised


as a minister, and that is the culture that we want to take forward


in the Welsh assembly and the Welsh government.


The rise of radicalisation and extremism has dominated


the headlines over the past year, with Cardiff in the spotlight


after three young men from the capital fled to Syria


The UK Government's strategy, Prevent,


tries to stop people supporting terrorism.


But it's faced criticism, most recently from a former senior


Muslim police officer who described it as a "toxic brand"


used as a tool to spy on the Muslim community.


Mona Bayoumi is a barrister living in Cardiff.


She went to meet a group of young Muslims to discuss their experiences


and thoughts on how to tackle radicalisation and Islamophobia.


I have lived in south Wales since 1994 and I am a practising Muslim. I


have wanted to get involved in the local Prevent strategy in Wales,


despite my concerns regarding the wider UK Government scheme. This is


because I believe it provides individuals from all walks of life,


both within the new -- Muslim and wider community, a unique


opportunity to get involved in tackling this critical issue of


radicalisation. Recent news items have brought a


sharp focus on Cardiff in particular. Three young men from the


capital 's fled to Syria to join so-called Islamic State, but their


actions have had a devastating knock-on effect on the community


here. My hope is that members of the community can help shape the Prevent


strategy on the ground, making the best decisions to suit the community


and without demonising Muslims any further. And young people are key to


shaping it. Hello, nice to see you.


With recent stories about people fleeing to Syria and even people


from our local community in Cardiff, what would you say the impact that


has had on is in south Wales? There have been a series of events that


have built up to portray a negative image but I don't think that has


just shot the external community, I think Muslims themselves are quite


shocked as well. People are becoming more wary of Muslims. I feel when I


am walking down the street, I feel the stairs and I don't feel quite


safe. There has been interfaith events in Cardiff, in City Hall, and


we are trying to build bridges. But that is not in the media, it is


mostly negative aspects. People believe whatever they see in the


media, they don't believe in the other side of the story. The Muslim


community in Wales are foremost in wanting to tackle the rise in


radicalisation and bring extremism to an end. Groups like so-called


Islamic State are an utter abomination and fly in the face of


what Islam really stands for. All forms of radicalisation and


extremism are targeted under the Prevent strategy but despite threats


from other groups like the far right, the narrative from


policymakers as reported in the press focuses squarely on Islam.


This only adds to the frustration and sense of disenfranchisement that


the Muslim community across Wales is increasingly feeling and is plainly


a barrier to the success of efforts on the ground to address these


issues. It is imperative that these barriers are tackled head-on.


I'm joined now by Abdul-Azim Ahmed, the Assistant Secretary General


Would you say the Prevent strategy is working? I think, sadly, its


success has been limited. We have seen from the Labour government as


well as the Conservative government and in each case there has been


resistant against it, criticisms, and when we look on the ground that


success is few and far between. What is wrong with it? The strategy


focuses on ideology at the exclusion of other factors. Focusing on


ideology, what exactly does that mean in Cardiff, for example? There


are several programmes that can be delivered. We are trying to tackle


the messages coming from the extremists at a theological,


religious level, and they will say their version of Islam is... But the


triggers can be related to peer groups, they can be a sense of


grievance, and unless we start having programmes which address


these issues as well, it will only be partial coverage. David Cameron


suggested earlier this year which is to the effect that there was a


condoning, if you like, of this activity within the Muslim


community. Do you think he has got a point? I think that is very unfair


and it is not accurate. When we look at mosques and imams and the wider


Muslim community, the condemnation of extremism has been very clear. In


Cardiff, all the imams signed a letter with the theological


reputation and it is something where there is very little debate. And it


has got to come from there, hasn't it? If you are going to get at these


people who are not going to engage with governments or any publicly


funded organisations like Prevent, it has got to come from within the


community. Partly, yes, but radicalisation is a social problem.


It is taking place on the streets, in bedrooms, away from support


structures, away from mosques and families, away from schools, so it


needs the Government, mosques and religious leaders to be in


communication and conversation to bring individuals back into the


fold, background support structures that they are not with. Do you feel


within the community now that there is a sense of surveillance, if not


of spying, if you like, because that is the big criticism of the


programme? You need people to say, I am worried about what he or she is


up to. The University lecturers union boycotted Prevent for those


reasons, they felt it was spying. It is a criticism that is felt very


strongly among Muslims and one of the dangers of Prevent is that it


can undermine the idea of safe spaces. That in a mosque or school,


individuals can start discussing sensitive topics without feeling


that is going to be reported. We have had some horrible examples of


individual schoolchildren who been reported for simply mentioning


eco-terrorism in a French class. That is preventing staff engaging,


profession -- critically at the top levels. And as you say, there is


blanket condemnation but do you have any sympathy with somebody sitting


in a house may be in Cardiff, a young Muslim, totally


disenfranchised, totally disengaged from community, no sense of


belonging, they are watching videos of the caliphate, can use synthesise


with the draw of that? Not really sympathise, the draw is the same,


especially with young boys, as of the draw of gang violence and


extreme forms of masculinity. They are being attracted to a message


which is aimed at the age, aimed at individuals like them, and it is a


multiplicity of factors, not just a sense of isolation, a sense of


purpose they are being called to. Individuals who are most protected


from this are those who have support structures, families and a strong


sense of their theology. Those most bundle are the ones cut off from


this. That is where the effort needs to come from everyone to Mitchell we


are not leaving anyone on the fringes. Thank you very much.


Thanks for watching, and if you want to get in touch about tonight's


topics or anything else you think we should be discussing, the email


Bethan Rhys Roberts takes a look at access to cancer drugs in Wales. Does where you live affect what you get? And shining a spotlight on the Senedd - is there enough scrutiny of the Welsh Government and our Assembly members?

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