Documentary on Access to Cancer Drugs in the UK

[Whippit]

BBC Wales have commissioned a documentary to look at access to cancer drugs in Wales. There are regional discrepancies within Wales but also between Wales and England. The documentary follows my campaign to redress the imbalance in access to drugs, clinical trials and treatments.

The messages in this 45 minute documentary, whilst focussing on the particular experience of a patient in Wales, is applicable to the whole of the UK. I hope you think it's worth watching.

You can read the résumé and watch clips at the following website address. The programme will be aired during Ovarian Cancer Awareness Month on BBC Wales at 10:40 p.m. on Wednesday 23 March.

Please share the following link with friends/family/Facebook contacts to raise public awareness of ovarian cancer and of the inequality of access to cancer treatments across the UK.

bbc.co.uk/programmes/b0728m6k

[January-2016-UK]

Is that 10.40 in the morning? I've watched the clips, it's such an outrage that you and others have to subject yourselves to such long journeys to get your care.

Did David Cameron say he was going to do anything about it?

You are a Good warrior!

Helen

PS. I love your red coat.

[Whippit in reply to January-2016-UK]

Dear Helen, I don't watch television, but became a bit camera-savvy over the 8 months filming of the documentary. The film crew followed me just about everywhere. I have some very funny tales to tell about that!!!

I chose the red coat as it was a freezing grey day and thought it would show up nicely.

The worry about healthcare in the devolved nations is that David Cameron is powerless to do anything about it. Westminster has handed over power for for health to the Welsh Government. When patients in Wales challenged the four health spokespeople in the National Assembly about unequal drugs policies three of them blamed devolution. It isn't devolution. The Welsh Government choose to make differing drugs policies and allocate £3m each year of our NHS budget to create and maintain a mini version of NICE. We asked patients at a recent conference if they wanted drugs not available to others and there was a unanimous vote that they wanted the same access to drugs as everyone else. We don't want drugs that aren't available in England and conversely we don't want people in England to have drugs we can't have.

I think the inequality of access to drugs and clinical trials is highlighted particularly in Wales because 16% of our cancer patients have to be referred to English hospitals as we don't have the resources here but when they get to England they find they can't have the same drugs as other patients in their treatment centre.

I was happy to travel 2 hours to a cancer centre in England that provided me a better range of treatment options and access to clinical trials. It also has a better survival record for ovarian cancer so I thought it was well worth the effort.

All this is in no way a criticism of the wonderful doctors and nurses we have in Wales. It is a criticism of government policy and I've only recently woken up to the fact that devolution will run amok unless the electorate take some responsibility to follow what's going on and have a say.

Oh dear this must be looking like a rant. I'm really pleased you liked my red coat. xxx sending loads of love Annie

[January-2016-UK in reply to Whippit]

I assume £3m could be saved straightaway if Wales followed England's NICE advice. Seems a waste of money to have a separate one. Does Wales fund any drugs that England doesn't I wonder. I don't understand why different regions in Wales have different access to drugs either. Doesn't seem to make any sense. Maybe all will be clear in the tv show.

[Whippit in reply to January-2016-UK]

It seems to me a huge waste to set up our own mini health technology agency in Wales. NICE are responsible for scrutinising every drug and deciding which ones will be funded by the NHS across the UK. They have an international function that our little agency in Wales can't fulfil and they will soon take responsibility for cancer drugs that have been available recently via the National Cancer Drugs Fund in England.

Our mini agency is called the All Wales Medicines Strategy Group. They couldn't possibly take on all the functions of NICE. They meet 10 times a year and approve the odd drug in Wales that isn't routinely available via the English NHS and sometimes they just approve a drug a few months ahead of England. We now have 5 cancer drugs routinely available on our NHS that aren't available via the NHS in England but can be obtained via the NCDF. Cancer is enough of a challenge without making things more difficult and distressing for patients and their families.

Unfortunately documentaries can't explain detail like. I just hope by highlighting general issues re access to drugs in the documentary and then by challenging politicians that they will be persuaded to review their policies and put things in place that benefit patients and the electorate. I still haven't discovered who exactly benefits from the current situation.

I agree £3M could be better spent. Two of the radiotherapy machines in the Cancer Centre in Cardiff are so old they break down. The radiographer told a conference she spends a lot of her week reorganising appointments and worse still, patients aren't receiving their radiotherapy at the NICE recommended intervals. It would cost £3M to replace them and how many more patients would benefit from that expense than from the cost of having confusing and unfair drugs policies. xxx

[Anne-2]

Hi Annie

I'm going to put that on my planner now!!!

Just don't know how you have the energy to keep up this fight: there should be no 'border' issues to get treatment. I will tell all my friends to watch this.

Love

Anne xx

[Whippit in reply to Anne-2]

Thanks Anne. I think it is a UK issue. I have been lucky enough to have the energy and resources to fight and I've done so, alongside other campaigners, solely to get a better deal for those who follow me.

xxx Annie

[Beth25]

You are some woman Annie. I will be sure to watch on 23rd as thanks to the wizardry of technology I can get BBC Wales here. If only such equality of access applied to cancer treatments. Beth x

[Whippit in reply to Beth25]

There are terrible inequalities in treatments and life expectancy across the UK. Target Ovarian Cancer published a report on the postcode lottery last May. You can check out the facts for your local area in their report on their website:

targetovariancancer.org.uk/...

xx

[Dollysmum in reply to Whippit]

Very helpful, thanks Annie. x

[Lyndy]

Wow! Go you Annie...you're doing a marvellous job highlighting this situation...lots of love and admiration xx. Lyndall

[Whippit in reply to Lyndy]

There are loads of women doing their bit all over the UK and loads of women in this community too. I hope they will also post about their campaigns and activities during Ovarian Cancer Awareness Month. xx

[Hidden]

Well done Annie, I also love your coat. But you are doing immense work in getting awareness out there and about the inequalities of treatment in the various areas. I have emailed two MEPS here one from Northern Ireland and another from Cork regarding Ovarian Cancer. Apparently there was a delegation from Cork to Brussels last week to inform them that the Cancer Services here needed revamping badly. I dont know who was in the delegation only that it was led by Martina Anderson from Belfast but it was in regards to the Cancer Services here in Cork, How she is concerned with Cancer Services in Cork is beyond me, But if it helps that is okay too. I hope you are doing okay and resting as much as possible

[Whippit in reply to Hidden]

That is strange that a Sinn Féin MEP from Belfast has gone to the European Parliament to represent you in Cork.

I understand from campaigners in Northern Ireland that the situation is pretty dire in N Ireland re cancer survival rates, access to diagnostics and drugs. I get the impression there's less awareness in N Ireland because it's so detached from mainland UK though I know some patients from N Ireland are getting addresses in England and travelling to centres here for their treatment. That makes my two-hour train journey from Cardiff to Paddington look like a walk in the park!

It's good to see campaigners like Ann Adair from Belfast attending the All Party Political Group for Ovarian Cancer in Westminster to tell everyone what is going on in Northern Ireland. It's quite a new step. Una Crudden never came over to those meetings. Attending the APPG and other events in England has helped us a lot in Wales so I hope it will help the cause in N Ireland.

When someone had the great idea of dividing up the cumbersome NHS UK into four to make it easier to administer you'd have thought they would have had the good sense to divide it up into four equal segments with equal access to centres of excellence.

The Minister of Health for Wales told me himself that Wales is a small country and it can't possibly have a centre of excellence for every minor disease. That means that women with ovarian cancer and people with other rarer diseases are going to lose out because they are denied access to the best treatment centres.

[Hidden in reply to Whippit]

Yes it is actually but sometimes newspapers will write anything to fill up a space. I havent got a reply from either lady. I will contact a more local MEP to try and discover what this was actually about. Two people from a minor party I have no issues with but how they grouped the delegation must be investigated to be honest.

[vipervictoria]

You've exposed a situation that is ludicrously unfair that most people find out about when it's too late. That's how change happens. The more I see of the health service the more I think it needs a commission of enquiry and a massive shake up. But I don't think any of the major parties have the courage to do it. All power to you. Vx

[Dollysmum]

Annie, you are one amazing woman to do this. I can't wait to watch it in full. xx

[LittleSan]

Ah well done again Annie - your energy astounds me! We must stop this injustice (ooh I can feel a fb rant coming on again!). Looking forward to watching the full programme.

All power to your elbow (or wherever else you need it!).

Much love to you. Sandra x

Ps what a lovely speaking voice you have.

[Whippit in reply to LittleSan]

Hi Sandra

I hope the documentary highlights some of the issues and that will motivate others to take up the cause to redress unequal access to treatments.

I've just been very lucky over the last five years that I feel perfectly well most of the time and I'm even more fortunate that chemotherapy doesn't seem to knock me back to any great extent. I know how much other women suffer and it seems wrong that I've had it so easy.

It's funny how a few of the things I've been involved with over the years have all come to a sort of head at the same time. It's lucky for me as I'm now resistant to treatment and have got to the stage where the body is unstable from all the drugs I've had over the years. Time to take a bit of a back seat and hope that we will see meaningful changes leading to better access to diagnostics, treatments and clinical trials and that we shall start to see an improvement in our survival rates across the UK.

Meanwhile in the labs and hospitals around the world there are people beavering away looking for a cure for this disease. I have no doubt that isn't far off.

xx Annie

[LesleyGreengran]

It's so unfair that we have this postcode lottery when it's been publicised for so long. You're a star Annie to be highlighting the situation.