OVARIAN CANCER features on The One Show at 7 o'clock on Monday 6 October. It follows the story of cancer patient Annie Mulholland who discovers 2½ years into treatment that she had not been given the same information as other patients in Wales about the cancer drug Avastin and that information given to her about access to clinical trials had been misleading.
Wales has 5 year cancer survival rates equivalent to the poorest nations in Europe. There is no cancer drugs fund so oncologists have no idea whether a patient in Wales will be able to access a drug they have recommended. They are, however, aware of the poor chance of obtaining drugs from health boards such as Cardiff and the Vale. An oncologist from The Velindre Hospital told a meeting of Assembly Members it was notoriously the least likely health board to fund cancer drugs.
I live in Cardiff, Wales' Capital City, and I thought I was fortunate to be treated at The Velindre Hospital, Wales' major cancer centre. Not so fortunate when I discovered I could benefit from a cancer drug that is available from the NHS elsewhere in Wales, and in England, and that I could have had access to clinical trials 'outside the area' which seems to be the Health Boards' term for 'Outside Wales'.
Surely it's reasonable to expect fair treatment for all patients accessing the NHS across the UK. Wales needs to do something if it wants to improve its poor survival rates compared to other countries in the UK and Europe.
I agreed to appear on this show with great trepidation. It's an intrusion of ones privacy to let 2 million viewers into your home at 3 in the morning when you're getting up to catch a 4:10 bus to London. I campaigned for 16 months after I realised there's a postcode lottery for cancer drugs in Wales and in that time I've exhausted all democratic routes of representation at Westminster and in the Welsh Senydd. It's time to say a massive thank you to so many people who've encouraged, supported and provided helpful information, advice and contacts. These include the lovely Una Crudden in Belfast, Northern Ireland, and the late Sharon Gould-Graham of Fife in Scotland. Both fantastic campaigners for equality of access to NHS treatments in the UK. There are also the clinicians and Expert Witnesses who told the Assembly in no uncertain terms that the current system of allocation of drugs is not fit for purpose, that it is harmful to patients, and that it threatens to damage the reputation of the Welsh Oncology Service. Another clinician submitted a written response worrying that the lack of system in Wales may compromise Wales' ability to engage in high-quality clinical research. Thanks also to friends and family, and several major charities in London who have made, to date, a number of unsuccessful representations in Wales for a fairer allocation of cancer drugs.
Most of all I'd like to thank friends here on the Ovacome site for your kindness and especially for tolerating my early posts when I was desperately struggling to deal with the barriers and smoke screens that are embedded in the NHS in Wales. Your feedback, positive and negative, messages, and guidance helped me through one of the bleakest periods of my life and transformed what seemed an irresolvable problem into a campaign that I have fought shoulder to shoulder with many others in the hope of improving the lot of cancer patients in Wales and the devolved nations.
If you care, please SHARE on Facebook, Twitter and other fora.
xx Annie
If you have been denied cancer drugs there is a charity which may be able to help: The Pamela Northcott Fund, pamelanorthcottfund.org.uk.
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Wow Annie, well done to you for highlighting problems of Avastin!!So proud of what you have done and are continuing to do by appearing on the One Show.
Lives are continually taken away by cancer, families and loved ones left bereft, when there could be a life saver out there. It simply is totally unacceptable for health authorities to refuse to pay for these treatments.
Annie, I admire you greatly, it's hard enough battling this disease without the extra truma of fighting the system. I will watch the programme on Monday and share it on FB and Twitter. I have just discovered a few weeks ago that Jersey doesn't provide Avastin either, but I have the whole oncology department writing letters in my behalf .
Jill, well done you for chasing this up in Jersey. It might be worth your contacting the Kate Northcott Trust who work in all areas of the UK. Different perhaps with Jersey having a private health care system. Perhaps it's worth putting a question on the Ovacare site which is for Eire who have an equivalent system and their patients have access to Avastin.
Power to your campaign. Hoping to meet up one day at the RM. xxxx Annie
Annie. I know we all keep saying it, but you are such in inspiration to all of us, and it makes me guilty that I don't really do anything to raise awareness of OC. As you know, in Ireland we have access to all drugs and I know that even though I am on my 3rd round of OC, that living with this disease for nearly 4 years is good.
I will mark The One Show for nxt Monday and record it.
Sorry to read that you are having some complications at present - but you have fought so much, that please God you will get through these complications. I am in in Thursday for session 3 and following a rough few weeks, I am feeling so good now, that fingers crossed that my constipation problems are over.
My daughter Jaci was an OC patient in our local Welsh hospital and was not given Avastin even though we would have paid for it. The oncologist said it would not help her and she died after three years age 48 . I shall watch the one show with great interest as I have been reading your posts and feel that I know you. Well done for fighting the cause. Gillx
Dear Gill, I can only say how sorry I am to hear of your dreadful loss. I hope I have never given the impression that the Welsh oncologists are obstructive about Avastin. I've only found them to be entirely positive about that drug and I would imagine if you were told it wouldn't be suitable that is correct. That's the problem for patients who are campaigning for a drugs fund. It's just so complicated. I know for certain that Avastin isn't an option for women who have bowel involvement as there would be a risk of rupture. It's also not suitable for patients with very small tumours as Avastin works by blocking the blood supply to tumours, and speck-like tumours have no blood vessels. I am sure there are many other clinical reasons for it not being suitable for everyone.
Hopefully I will fight the cause for women who are eligible and should be receiving Avastin in the interests of Equality Law in the United Kingdom.
I was asked if there were any statements I wished to remain in the clip and the first was that from personal experience I consider Welsh oncologists to be every bit as qualified as oncologists at the Royal Marsden. Unfortunately oncologists in Wales don't have access to the the cancer drugs fund and clinical trials are limited due to staff and funding constraints. For some reason health boards are resistant to referring patients to clinical trials or second opinions outside Wales. It's a shame as it would give our oncologists direct experience of managing a patient undergoing new and novel treatments and it would get the patient out of the Health Board rut.
Thanks so much for your support. I hope the show helps to highlight the facts of the case rather than sensationalise it.
Well done for all your hard work in raising the profile of OC and especially in your latest endeavour! I'm not sure I would want to be filmed at that time of the morning at anytime let alone when going through chemo!! The disparity between treatment across the uk seems unjust- I don't know enough about the devolved powers to comment much, but with an uncommon disease like OC we should be gaining as much information as possible about treatment options and responses. Surely that is best done UK wide, rather than by individual nation?
See, that in a nut shell explains why I think so very highly of you Annie. I hope I can get the One Show in Dublin !!!
Xx
Trish
Hi Annie
I still dip in and out of this forum although I don't often comment. I am not paticularly articulate and usuallually somebody has already said what I am thinking. I love reading your posts, you are such a knowledgeable lady. I really admire the way you campaign for all of us. I also feel that I know you and will watch the One Show on the 6th. So proud of you for doing this to bring awareness to the millions of people watching.
This is such an important thing you are doing and we will all be with you in spirit next week. I will share on Facebook and tell all who will listen. I have been doing a few talks to ( small) groups and realise I haven't incorporated this disgraceful issue. I will from now on. I will also contact my own MP.
Annie, you are amazing, a real heroine. I don't know how, given your health, you found the strength to fight through all this, for yourself and for what all women in our situation rightfully deserve: equitable and clear treatments explained and available. Really proud of what you've achieved, I couldn't have done it. Much love and best wishes. xxx
Hi Annie, have shared on Facebook already as you know. Last night on BBC NI Spotlight programme was about the Cancer Drugs Fund in England and not avail in NI. You may be able to catch it on the i-player. Ann xo
Dear Ann - thank you so much for signposting the amazing BBC NI Spotlight Programme 30 September. What an extraordinary powerful, truthful pitiful story for cancer patients in Northern Ireland. It made me weep. I'm inspired by the way the oncologists say it as it is in Northern Ireland and I've emailed Roisin Foster, CEO of Cancer Focus NI. Sadly we have no body of this sort in Wales.
The most important message is that people in N Ireland don't have to move to England for treatment and they don't have to move away from their communities and their friends at home. They just need an address in England. They need to register with a GP who serves that address and they can access cancer treatment in England and the English National Cancer Drugs Fund. I now have two homes. One in Cardiff and another in England and patients in this situation can only register one address to access health care. It seems to me the cost of Ryanair Flights to England are far cheaper than the cost to people in Northern Ireland who are spending their life savings each month on paying privately for cancer drugs but having said that the travel back and forth is tough and expensive so that has to be considered.
I didn't know before watching the Spotlight Programme for Ireland that the cost of setting up a National Cancer Drugs Fund for 1.9M people in N Ireland would be a paltry £5-7M. That means for Wales having a population of £3M it would be approximately £3.3M to £4.6M per annum. The Welsh Assembly Government paid £52M for a failing airport valued at £34M this year. The £18M they wasted would have therefore paid for a Cancer Drugs Fund for 4 years.
So pleased to see you are still fighting Annie! Go you! A true inspiration. Will get hubby to record the One Show on Monday. Look forward to your coverage
It was wonderful and inspiring to meet you the other week Annie. I hope they will honour your story and relay everything you said with integrity. Quite apart from the inequalities around Avastin, I feel we should be raising awareness of the need for aggressive surgery that really allows time to address all evidence of cancer. Why is it still called de-bulking? This goes back to the old days when they didn't even try to get all cancer out. It should be called tumour removal surgery or something like that. I know it is not always possible to extract everything but surgeons should have all the theatre time they need to remove everything that is possible.
I know it is, and has been, a very tough road for you but I hope you rejoice in all the love and admiration you have won.
I think at the posh hospitals they refer to 'debulking' as cyto-reductive surgery - but I think perhaps that's only at the centres which are performing radical or super-radical surgery. Perhaps that's a clue to working out in advance the skill of our surgical team. We could ask them if they perform 'cyto-reductive surgery' or 'debulking'.
Oh my word - how can we find out if there is a distinction between the two. Wouldn't it be wonderful if someone has the gall to ask and then posted up the consultant's response.
xxx
Attagirl, Annie....
I do think the least they could have done would have been to give you a lift to London at an acceptable hour.
lol - well I would have preferred Panorama - but beggars can't be choosers. Hats off to the One Show staff. They were working and filming throughout the four-hour bus journey whilst I was fast asleep.
Thanks for all those lovely comments. How I wish I met even one of the lovely descriptions you've ascribed to me. I'm afraid I'm just a angry woman consumed with moral outrage at the unfair access to cancer drugs in the UK. I'm not afraid to speak out and rattle cages, and I daresay I have a way with words.
I think ovarian cancer just gave me an opportunity to find my real vocation. I dread the time I have to abandon my cancer career and confront it as the horrible disease it is. xx
You are magnifique , without doubt ...keep raging , it is a wonderful survival technique ! It is a battle , this disease , and it seems to me , that in fighting the drug inequalities , that you have already confronted it , head on !
I will be on the sofa thinking about us all , and admiring you from afar x
Well done Annie, can I see that programme over here, what channel is it on as I would love to watch it. Or if not could you send me a link to the podcast. Sorry you are facing into more possible treatment. I am having a scan next week, should have been last week but I changed it and took a few days off for a break. Lymph nodes up last time so rather unsure what this will hold for me but one thing I have learned is what is in the scan is there and you cant deny it but just get on with treatment. Wishing you well for Monday and wishing you well for whatever course of action you have to take with treatment, Best wishes Joan
I have put it on the calendar! I am so glad that you are so articulate and know that you have achieved so much to raise the profile of treatment for this b----- condition!
Carol, I'm so delighted to hear you're doing so well. There is a wonderful team at Llandough Hospital (now The Heath) and Delyth Ward was the best. Thanks for sharing this with your friends and family. I attended the NHS Patients Conference this week and asked the question on behalf of all patients - 'How much longer do the people of Wales have to put up with a postcode lottery for cancer treatments?'. It got a round of applause. I was really shocked but then a lady then told me it was what they all wanted to say and she gave me a high five.
Appendixes are useless things. I had mine out too. I'd rather not have had to dispense with my womb and ovaries. I quite liked having them.
Amazing Annie, I will watch it and spread the news to family and friends too.
Much love
Carol xx
Hi Annie,
Just wanted to add another voice to the others - I completely admire your energy and tenacity in building so much awareness and the big decision to also take your personal situation into this very public arena is a remarkable and non-trivial one. So many of us (at least sometimes) would rather stay very private about the indignities of this condition, and for you to turn it into something that creates meaning in the world, and in your own world, is in my view a very fine thing. Bravo!
Dear Judith, I hadn't thought of it as anything out of the ordinary. I've had unusual luck to have felt well for the most part since my diagnosis in April 2011. Many don't and I can fully appreciate many patients just don't want to worry about the politics of cancer drugs.
I didn't have access to Avastin as I have a home in Cardiff but I've managed to get hold of it by establishing two addresses and I now access NHS care from my English address. I see the way people are suffering in Wales, and particularly N Ireland where theses drugs are not available at all so I thought I'd join the people who are already speaking up. It's very hard to find out what's going on in Wales because of the lack of transparency but over the last 16 months I've done my best. I recently participated in a review of the cancer plan in Wales - both as an observer at formal meetings, and as a participant in two written consultations and via a patient focus group. Many of us who were involved or witnessed this expensive and time-consuming consultation were angry because it appeared to be a complete sham, It seemed to many of us that the Government of Wales is ignoring not only the patients' voices but also the advice of practitioners who were called in by the Government as Expert Witnesses.
A huge issue for me is whether I am speaking for the majority but I am convinced from a 16 month campaign and extensive networking within the cancer community across the UK that I do.
Let's hope the combined effort brings some justice to the people in the devolved nations. There will always be regional differences in health provision but everyone in the United Kingdom should be assured that every effort is made by our Governments and the four NHSs to ensure we have equality of access to health services for which we have paid an equal contribution. xxx Annie
Annie, pre-set the program so that I would not miss it and watched it last night. Take A Big Bow and Well Done for highlighted the problems that women in parts of UK have to face in the battle for treatments. Having made a huge number of bus journeys (my choice on holidays), I can understand how tiring the journey must be - particularly when you are facing a treatment.
So I hope that the program will make some change for UK women - when the Gov/ NHS decision is based on cost and not effectiveness for prolonging life.
I do love this site and all the lovely friends here with your chat and support. I have just done some filming for the Welsh-medium TV, S4C, and an interview with The Daily Mail. Tomorrow Wales online are coming to my house to interview me and take a pic.
The battle is long and hard and I have great support from friends and contacts in Wales. We've set up a One Voice for Wales Facebook Group:
where we can share information, documents, media opportunities, etc. Challenging injustice dealt out by a government is indeed a hard slog. Cancer is just a misfortune so I can cope with that.
I am sure it must have been you Annie ,that I heard on Any Questions this week (or rather Any Answers ) . As usual Annie you were raising the standard of the debate.
Hi Suzy, it was me. Just in case anyone is interested I've just put up a post about Any Answers. It was a privilege to have the opportunity of an intellectual debate on BBC Radio 4 about the NHS provision in the 4 countries of the UK rather than merely sensationalising the story of a 'Health Refugee'.
I do abhor the smug complaisance of politicians who pick and choose what they share with the public rather than giving them some fair and balanced advice.
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