04/11/2015 The Wales Report

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