0:00:03 > 0:00:05The Health Minister says a dedicated fund
0:00:05 > 0:00:07to pay for cancer treatments
0:00:07 > 0:00:09won't be introduced in Wales.
0:00:09 > 0:00:11It is a scheme which is neither ethical,
0:00:11 > 0:00:12lacks clinical support
0:00:12 > 0:00:16and would deliver a lesser service to cancer patients in Wales.
0:00:16 > 0:00:18When Offa's Dyke becomes the line
0:00:18 > 0:00:20between life and death,
0:00:20 > 0:00:22we are witnessing a national scandal.
0:00:22 > 0:00:24Let's hear from Annie Mulholland.
0:00:24 > 0:00:27Annie Mulholland is living with terminal ovarian cancer.
0:00:27 > 0:00:30Annie Mulholland couldn't get Avastin on the NHS.
0:00:30 > 0:00:33Joining us now is Annie Mulholland.
0:00:33 > 0:00:36For nearly five years, I've been in the middle of a controversy
0:00:36 > 0:00:38over cancer care in Wales.
0:00:38 > 0:00:39I am Annie Mulholland,
0:00:39 > 0:00:41I have terminal ovarian cancer and,
0:00:41 > 0:00:45when my Welsh health board denied me the drug I needed
0:00:45 > 0:00:47and blocked access to clinical trials,
0:00:47 > 0:00:50I decided to campaign for fairer treatment.
0:00:51 > 0:00:53Like hundreds of others in Wales,
0:00:53 > 0:00:56I had to go to England to get the drug.
0:00:56 > 0:00:58Now, after treatment in a London hospital,
0:00:58 > 0:01:00I'm still going strong,
0:01:00 > 0:01:02living more years than anyone expected.
0:01:02 > 0:01:04But I don't have long left,
0:01:04 > 0:01:06so this is the story of my campaign
0:01:06 > 0:01:10for fairer care for cancer patients in Wales.
0:01:10 > 0:01:11Before I die, I'd like to see
0:01:11 > 0:01:14the end to the border between England and Wales
0:01:14 > 0:01:16being a matter of life and death.
0:01:23 > 0:01:26I live in Cardiff, I'm 62
0:01:26 > 0:01:30and I was diagnosed with terminal ovarian cancer in 2011 -
0:01:30 > 0:01:35so I had to retire from my job in education to undergo the treatment.
0:01:35 > 0:01:37I had surgery, chemotherapy,
0:01:37 > 0:01:40and I assumed I was having the best possible care -
0:01:40 > 0:01:43then I found out I was being denied a drug I needed.
0:01:43 > 0:01:46It was being given to other women in Wales through other health boards
0:01:46 > 0:01:48on a case-by-case basis
0:01:48 > 0:01:51and it was guaranteed to all women who needed it in England,
0:01:51 > 0:01:53as it was on the Cancer Drug Fund List.
0:01:53 > 0:01:56When I started running a support group for ovarian cancer
0:01:56 > 0:01:57and I ended chatting to women
0:01:57 > 0:02:00from different health boards around this area,
0:02:00 > 0:02:02and we were comparing what we were told
0:02:02 > 0:02:04and what we were having,
0:02:04 > 0:02:07and then I became aware of a drug called Avastin.
0:02:07 > 0:02:08When I heard about it, I assumed,
0:02:08 > 0:02:10"Well, I just can't be medically suited to it,
0:02:10 > 0:02:12"otherwise somebody would have mentioned it."
0:02:12 > 0:02:14And I did a little bit of research into it
0:02:14 > 0:02:16and it did occur to me that...
0:02:16 > 0:02:19I was medically suited to this drug, but it hadn't been mentioned and,
0:02:19 > 0:02:22when I brought it up with my oncologist,
0:02:22 > 0:02:24it became clear, over a little while,
0:02:24 > 0:02:26that it hadn't been mentioned to me because,
0:02:26 > 0:02:28at that time,
0:02:28 > 0:02:31Cardiff and Vale National Health Board had never funded it.
0:02:31 > 0:02:33It does seem hugely discriminatory
0:02:33 > 0:02:36and, obviously, I was incredibly upset.
0:02:36 > 0:02:38But I said to my consultant
0:02:38 > 0:02:40in the very same meeting,
0:02:40 > 0:02:43"Can you tell me what I can have if I didn't live in Cardiff?"
0:02:43 > 0:02:45And she refused to be drawn on that one.
0:02:45 > 0:02:47I said, "At this moment, I don't live in Cardiff."
0:02:47 > 0:02:50So, she looked rather confused and said, "Where do you live?"
0:02:50 > 0:02:52I said, "I don't know yet, but I'll find out where I'm going to live."
0:02:52 > 0:02:55Because I just was not prepared to live in Cardiff,
0:02:55 > 0:02:57in Wales' capital city,
0:02:57 > 0:03:00and to be denied a drug that other women could have.
0:03:00 > 0:03:03I was never told in Wales why I couldn't have Avastin
0:03:03 > 0:03:06or why I couldn't go on a clinical trial and get it that way.
0:03:06 > 0:03:08So, I had no choice.
0:03:08 > 0:03:11If I wanted to live, I had to switch my treatment to England
0:03:11 > 0:03:14where the drug was instantly available.
0:03:14 > 0:03:16We're quite some way from Wales.
0:03:16 > 0:03:18We're in London, in Chelsea.
0:03:18 > 0:03:19This will be the first one
0:03:19 > 0:03:23of my third line of chemotherapy for ovarian cancer.
0:03:23 > 0:03:26I am afraid my hair's going to fall out in approximately 28 days.
0:03:26 > 0:03:28It comes out big time.
0:03:28 > 0:03:29I shall be in a chemo chair
0:03:29 > 0:03:32for about six or seven hours.
0:03:32 > 0:03:34I shall be well amused because I've got my art kit,
0:03:34 > 0:03:37so I'm going to do a bit of drawing today - keep myself amused.
0:03:40 > 0:03:42As I promised, I've had my chemotherapy
0:03:42 > 0:03:44and my hair's fallen out.
0:03:44 > 0:03:47Not all of it, I still have a little bit of the baby fluff there.
0:03:47 > 0:03:49And I knew I had to go like that.
0:03:49 > 0:03:51I'm married -
0:03:51 > 0:03:53I've been married for five years to Martin -
0:03:53 > 0:03:55and, between us, we have five daughters,
0:03:55 > 0:03:57we have three granddaughters
0:03:57 > 0:03:59and two grandsons.
0:03:59 > 0:04:02I received a phone call to confirm that,
0:04:02 > 0:04:03yes, it was ovarian cancer
0:04:03 > 0:04:07and they absolutely couldn't operate and take it out.
0:04:07 > 0:04:09The news that they were told was
0:04:09 > 0:04:12we had 12 to 18 months at best
0:04:12 > 0:04:13and I think, at that time,
0:04:13 > 0:04:17the family just went into, sort of, blind panic.
0:04:17 > 0:04:20Everyone is coping with things in their own different ways
0:04:20 > 0:04:23and sometimes that's quite hard to pull together.
0:04:23 > 0:04:27For Mum, obviously facing the news of her own death was very traumatic.
0:04:27 > 0:04:29But for her daughters and her granddaughters,
0:04:29 > 0:04:31the news that they might not...
0:04:31 > 0:04:33Mum might not be there for them in the future
0:04:33 > 0:04:37was particularly hard for us all to come to terms with.
0:04:37 > 0:04:38We prepared the girls.
0:04:38 > 0:04:40They're aware that I've been ill for a few years.
0:04:40 > 0:04:43I explained to them that I'm going to have such strong medicine
0:04:43 > 0:04:45that it will make my hair fall out if it's successful.
0:04:45 > 0:04:48So, the first time they opened my front door and they saw me,
0:04:48 > 0:04:50they looked a bit horrified at first,
0:04:50 > 0:04:53and then I was laughing and I said, "There, the medicine's working."
0:04:53 > 0:04:55And everyone was really happy.
0:04:55 > 0:04:56They're very happy about it too.
0:04:56 > 0:04:59They did say to me, "Well, are you going to go out like that, Granny?"
0:04:59 > 0:05:02And I said, "Well, yeah, I think I will, because this is me.
0:05:02 > 0:05:04"I don't want to hide it with a wig or anything,
0:05:04 > 0:05:06"I'd rather be myself."
0:05:06 > 0:05:09They stroke my hair because they say it's like suede.
0:05:09 > 0:05:11Cos the new hair's beginning to grow through
0:05:11 > 0:05:13and it's rather soft and sweet.
0:05:13 > 0:05:15SHE GIGGLES
0:05:15 > 0:05:17In the last three-and-a-half years,
0:05:17 > 0:05:18we've taken the opportunity
0:05:18 > 0:05:21to do as many things as possible as a family -
0:05:21 > 0:05:24from taking Mum skiing in France
0:05:24 > 0:05:26to organising my wedding,
0:05:26 > 0:05:28to organising her own wedding to Martin.
0:05:28 > 0:05:30We have done so much as a family
0:05:30 > 0:05:32and the time that we have has been precious.
0:05:32 > 0:05:36We've known that we have the opportunity to make this good
0:05:36 > 0:05:39and it has brought us hugely closer together as a family.
0:05:43 > 0:05:45The Welsh Government says it won't run a cancer fund
0:05:45 > 0:05:47because it's ineffective -
0:05:47 > 0:05:49claiming not all the drugs work -
0:05:49 > 0:05:51and unethical, favouring cancer patient over others
0:05:51 > 0:05:54with life-threatening illnesses.
0:05:54 > 0:05:55I sympathise with that,
0:05:55 > 0:05:58but I feel it's unfair that I have to cross into England
0:05:58 > 0:06:00and access the Cancer Drug Fund there
0:06:00 > 0:06:02to get the treatment I need to live.
0:06:02 > 0:06:05And it's available to other women.
0:06:05 > 0:06:08As I questioned and protested about this discrimination,
0:06:08 > 0:06:11I soon found myself running a campaign.
0:06:11 > 0:06:14It's centred around my blog, 'One Voice for Wales'.
0:06:14 > 0:06:16And one of the big things I campaign about
0:06:16 > 0:06:19is for more patient involvement.
0:06:19 > 0:06:21So, I've just decided to stage a unique event -
0:06:21 > 0:06:23a patient voices conference
0:06:23 > 0:06:26where politicians come and listen to us.
0:06:26 > 0:06:29Well, the elections are coming up
0:06:29 > 0:06:32next May in Wales and, of course,
0:06:32 > 0:06:34NHS and cancer services in Wales
0:06:34 > 0:06:35are going to be a huge vote issue.
0:06:35 > 0:06:38And we thought it was important, before the elections,
0:06:38 > 0:06:42to make sure AMs know what patients are thinking.
0:06:42 > 0:06:46It's going to be a pretty big event, probably,
0:06:46 > 0:06:49and I think it might be the first of its kind in the United Kingdom.
0:06:49 > 0:06:53I've not heard of another patient event set up like this.
0:06:53 > 0:06:58Being diagnosed with ovarian cancer is... It's a devastating moment.
0:06:58 > 0:07:01To see somebody going through all of the treatments,
0:07:01 > 0:07:06fighting for those treatments
0:07:06 > 0:07:10and yet still have time to support other women,
0:07:10 > 0:07:15to campaign for better access to diagnosis and treatments,
0:07:15 > 0:07:17this is quite extraordinary.
0:07:17 > 0:07:22And I have never, ever heard Annie complain.
0:07:24 > 0:07:26If I'm on treatment, I go to London most weeks.
0:07:26 > 0:07:29I used to get the bus because it was much cheaper but, these days,
0:07:29 > 0:07:33I get tired and so the train is easier, if much more expensive.
0:07:36 > 0:07:40The good bit about the train is I can work on my campaign
0:07:40 > 0:07:42and interest in my patients' voices day
0:07:42 > 0:07:45has really taken off in recent weeks.
0:07:45 > 0:07:47Patients from all over Wales are enthusiastic about it
0:07:47 > 0:07:50and charities have been a huge support.
0:07:50 > 0:07:53At the moment, I'm expecting about 30 cancer charities
0:07:53 > 0:07:55and about 40 patients.
0:08:02 > 0:08:04In the good weather, I try to cycle when I get to London
0:08:04 > 0:08:08but, if I'm tired, I can get the bus or tube, or walk -
0:08:08 > 0:08:10and, if I feel really bad,
0:08:10 > 0:08:12I can treat myself to a taxi.
0:08:12 > 0:08:15I am now 150 miles from my real home,
0:08:15 > 0:08:17but I've been registered here with local doctors
0:08:17 > 0:08:20for the English Health Service.
0:08:20 > 0:08:22Well, this is my main NHS address.
0:08:22 > 0:08:23It's in Brixton, in London.
0:08:23 > 0:08:25In fact, it's my daughter's home
0:08:25 > 0:08:27and I'm pretty lucky to have a daughter in London
0:08:27 > 0:08:30where I have an access to a greater range of treatments -
0:08:30 > 0:08:32and particularly, to clinical trials,
0:08:32 > 0:08:35which is what I want as a patient with incurable cancer.
0:08:36 > 0:08:39Tomorrow, busy day tomorrow.
0:08:39 > 0:08:41I shall be leaving here at about 7:30am,
0:08:41 > 0:08:42rushing down to the Marsden
0:08:42 > 0:08:45and then I've been asked to go to the Chelsea and Westminster
0:08:45 > 0:08:47to give a talk to fifth year medical students.
0:08:47 > 0:08:49They want to meet a woman with ovarian cancer
0:08:49 > 0:08:52and share my experiences.
0:08:52 > 0:08:54So, then I rush back to Marsden and I see my oncologist.
0:08:54 > 0:08:57I just hope I've got time for it all.
0:09:00 > 0:09:03I'm just recording this from the Royal Marsden but,
0:09:03 > 0:09:05here I am in the chemo ward and,
0:09:05 > 0:09:09as you can see just here, there is a chemo pump.
0:09:09 > 0:09:12I have approximately about 40 minutes left of this chemotherapy
0:09:12 > 0:09:14and then I have a little rest,
0:09:14 > 0:09:17and then I have another bit of chemotherapy later on.
0:09:17 > 0:09:20SIRENS WAIL
0:09:20 > 0:09:22So, a couple of tips...
0:09:22 > 0:09:23from me, anyway.
0:09:23 > 0:09:25As you meet your patient,
0:09:25 > 0:09:28please give your given name, your surname.
0:09:28 > 0:09:30Don't call yourself Doctor.
0:09:30 > 0:09:31It just feels patronising.
0:09:31 > 0:09:34At first, I think we slightly dismissed the thought
0:09:34 > 0:09:36that there could be such huge inequalities
0:09:36 > 0:09:37between the health system in Wales
0:09:37 > 0:09:39and the health system, here, in England.
0:09:39 > 0:09:41And I think, in some ways,
0:09:41 > 0:09:44we were sort of thinking this was Mum's, perhaps, strategy of coping
0:09:44 > 0:09:46as she was finding a way to survive.
0:09:46 > 0:09:50But, as she began to present the facts and figures, and the research
0:09:50 > 0:09:52and really, sort of, backing this up by people she'd spoke to,
0:09:52 > 0:09:55and particularly in the professional charities
0:09:55 > 0:09:56that support cancer -
0:09:56 > 0:09:58I think it began to dawn on me
0:09:58 > 0:10:02that the outcomes for people in Wales were so diminished.
0:10:02 > 0:10:04There was really no other choice
0:10:04 > 0:10:07but to, of course, welcome her here
0:10:07 > 0:10:10and say, "Come and have this care.
0:10:10 > 0:10:12"Come and stay with us in London."
0:10:12 > 0:10:15Is that sizeable? Is that the size of a chunk you want?
0:10:15 > 0:10:17Yeah, that's fine. Just put them in a pan.
0:10:17 > 0:10:21'I'm by no means the only Welsh exile.
0:10:21 > 0:10:23'According to the hospitals that I've been to,
0:10:23 > 0:10:25'there are an awful lot of patients from Wales'
0:10:25 > 0:10:27who have addresses in London
0:10:27 > 0:10:29to access the centres of excellence here.
0:10:29 > 0:10:31It's quite common, as I understand.
0:10:31 > 0:10:33And I do have a personal friend,
0:10:33 > 0:10:36a lady called Mary Funke Burrows,
0:10:36 > 0:10:38who would have been known in Wales quite well
0:10:38 > 0:10:40because she's the former chief executive
0:10:40 > 0:10:42of Betsi Cadwaladr Health Board Trust,
0:10:42 > 0:10:45and she has moved to London
0:10:45 > 0:10:46to be with her son
0:10:46 > 0:10:49to access treatment that she couldn't have in Wales.
0:10:49 > 0:10:52The former head of a Welsh health board has moved to England
0:10:52 > 0:10:56so she can get a cancer drug she wouldn't be eligible here for.
0:10:56 > 0:10:59Mary Burrows, who ran the Betsi Cadwaladr Health Board,
0:10:59 > 0:11:02told BBC Wales there needs to be a public debate
0:11:02 > 0:11:04about how we fund new treatments.
0:11:04 > 0:11:07There needs to be a debate about, across all the UK,
0:11:07 > 0:11:09about how we fund these treatments.
0:11:09 > 0:11:11It's not just cancer treatments,
0:11:11 > 0:11:15it's all the advanced technology and surgeries that are coming through
0:11:15 > 0:11:17that people will want to access
0:11:17 > 0:11:19and there's a price that comes with that.
0:11:21 > 0:11:23The former head of a Welsh health board
0:11:23 > 0:11:26who moved to England access cancer treatment has died.
0:11:26 > 0:11:28Mary Burrows, who was chief executive...
0:11:28 > 0:11:31I'm here in my London home
0:11:31 > 0:11:33about to go to a funeral today
0:11:33 > 0:11:36of a very good friend, Mary,
0:11:36 > 0:11:37who died a couple of weeks ago
0:11:37 > 0:11:39from metastatic breast cancer.
0:11:39 > 0:11:41We had so much in common, really,
0:11:41 > 0:11:44with moving to London, and we were both at the Royal Marsden.
0:11:44 > 0:11:45Well, the last time I saw Mary,
0:11:45 > 0:11:48she was just about to go for the appointment
0:11:48 > 0:11:50that she suspected was going to be the one that said
0:11:50 > 0:11:53she could have no more treatment.
0:11:53 > 0:11:55She was the most extraordinary woman.
0:11:55 > 0:11:57She, sort of, took things in her stride
0:11:57 > 0:11:59but I think, at that moment,
0:11:59 > 0:12:00the day before that appointment,
0:12:00 > 0:12:03she had the fear that all of us have
0:12:03 > 0:12:06that there was nothing more that could be done for her.
0:12:16 > 0:12:19I do know people are coming down from Bangor, this morning,
0:12:19 > 0:12:20to get to the funeral,
0:12:20 > 0:12:23which I think is... It must be very heartening for the family.
0:12:26 > 0:12:28It's always a very different thing
0:12:28 > 0:12:29when you're faced with people's families
0:12:29 > 0:12:32and see their grief, because it's all too raw for me.
0:12:46 > 0:12:49I do think you can plan for a good death.
0:12:49 > 0:12:52Doctors don't want to talk about it, they want to save you,
0:12:52 > 0:12:55but part of my campaign is calling for palliative care
0:12:55 > 0:12:57to be introduced sooner.
0:12:57 > 0:12:59Apparently, Britain is the best in the world
0:12:59 > 0:13:01for palliative care -
0:13:01 > 0:13:03and Wales, the best in Britain -
0:13:03 > 0:13:06but oncologists could liaise earlier with the palliative team
0:13:06 > 0:13:10so there's a smooth, interactive handover.
0:13:10 > 0:13:12I'd been thinking about end of life plans for a few months
0:13:12 > 0:13:16before being asked to give this talk and I had been...
0:13:16 > 0:13:18'Today, I'm giving a talk about the patient view
0:13:18 > 0:13:22'of improving palliative care to the Royal College of Nursing in Wales.
0:13:22 > 0:13:25'Sharing a platform with the world authority on the subject,
0:13:25 > 0:13:27'Baroness Finlay of Llandaff.'
0:13:27 > 0:13:30I think the most important question for patients is
0:13:30 > 0:13:32whether there's, like, an integrated approach
0:13:32 > 0:13:35between palliative care and our oncology service.
0:13:35 > 0:13:37I think - here in Wales,
0:13:37 > 0:13:39and here in Felindre -
0:13:39 > 0:13:40we've achieved that,
0:13:40 > 0:13:41because the palliative care team
0:13:41 > 0:13:43is based in the cancer centre and
0:13:43 > 0:13:45works in a completely integrated way.
0:13:45 > 0:13:47So, if a patient needs to be seen,
0:13:47 > 0:13:49anybody can say that patient needs to be seen.
0:13:49 > 0:13:52You're not waiting for a consultant or a consultant referral.
0:13:52 > 0:13:54That is unique. Not...
0:13:54 > 0:13:56In the rest of the UK,
0:13:56 > 0:13:58people are waiting to be referred. Yeah.
0:13:58 > 0:14:02So, we are more fast-track than elsewhere.
0:14:02 > 0:14:04The problem is, of course, capacity.
0:14:07 > 0:14:10The system the Welsh Government uses for all medical conditions,
0:14:10 > 0:14:12not just cancer,
0:14:12 > 0:14:14to fund drugs and treatment not routinely available
0:14:14 > 0:14:16is through the IPFR -
0:14:16 > 0:14:19the Individual Patient Funding Request.
0:14:19 > 0:14:22Each patient's application is assessed individually
0:14:22 > 0:14:24by a panel under set guidelines,
0:14:24 > 0:14:26and health boards have to balance these appeals
0:14:26 > 0:14:28against the needs of the majority,
0:14:28 > 0:14:30the effectiveness of the treatment
0:14:30 > 0:14:31and the resources available.
0:14:31 > 0:14:34To succeed, patients have to prove
0:14:34 > 0:14:37exceptional clinical circumstances.
0:14:37 > 0:14:38So, inevitably, decisions vary
0:14:38 > 0:14:40between individuals,
0:14:40 > 0:14:41between health boards.
0:14:41 > 0:14:44A drug granted in one area of Wales
0:14:44 > 0:14:46but not another.
0:14:46 > 0:14:48Well, it comes back to what is and isn't exceptional
0:14:48 > 0:14:53and this is, sometimes, a difficult question to deal with
0:14:53 > 0:14:55because it's something about the condition you have
0:14:55 > 0:14:57and whether the treatment will have an exceptional benefit
0:14:57 > 0:14:59for the individual there.
0:14:59 > 0:15:05Now, we've looked again at the IPFR process of and for itself and...
0:15:05 > 0:15:07we had an expert review undertaken,
0:15:07 > 0:15:08relatively recently,
0:15:08 > 0:15:10and it made a series of recommendations,
0:15:10 > 0:15:12all of which the Minister accepted.
0:15:12 > 0:15:16And it examined the question of consistency, so we put some extra
0:15:16 > 0:15:20resource into the Wales toxicology and treatment centre.
0:15:20 > 0:15:24And that will now be looking at a range of conditions
0:15:24 > 0:15:27where health boards make different decisions on apparently
0:15:27 > 0:15:30the same treatment and the same condition, because that's
0:15:30 > 0:15:34not just difficult to defend, and I wouldn't try to defend that,
0:15:34 > 0:15:38what we need to do is to have a process to get a consistent
0:15:38 > 0:15:41decision made across Wales, so if you're in one health board area
0:15:41 > 0:15:44you don't get a different decision to if you lived in another.
0:15:44 > 0:15:47And there's a challenge there about then having a national approach.
0:15:47 > 0:15:50You can say actually, there should be a normalised approach,
0:15:50 > 0:15:52for this particular indication.
0:15:52 > 0:15:54Well, the Welsh government will say that, yes,
0:15:54 > 0:15:57where a patient is exceptional, they will give them the cancer drug
0:15:57 > 0:15:59if they qualify, but the only thing is that,
0:15:59 > 0:16:02with a group of patients all with the same cancer,
0:16:02 > 0:16:05with the same presentation of the disease, who would all
0:16:05 > 0:16:08equally well benefit from the drug, we are clearly not exceptional.
0:16:10 > 0:16:12Well, I'm outside the Houses of Parliament
0:16:12 > 0:16:15and I'm here to give a paper to the
0:16:15 > 0:16:18all-party political group for ovarian cancer
0:16:18 > 0:16:20about access to drugs in Wales.
0:16:20 > 0:16:23The Welsh government have never really been clear exactly
0:16:23 > 0:16:25how much they're actually spending on cancer drugs,
0:16:25 > 0:16:28and I think there is an issue here, and really,
0:16:28 > 0:16:32it's only by coming to Westminster that you really do find out
0:16:32 > 0:16:35what Wales has and how that compares with other people in other
0:16:35 > 0:16:36areas of the United Kingdom.
0:16:36 > 0:16:38There'll be a member of the House of Lords
0:16:38 > 0:16:40there'll be a number of MPs there,
0:16:40 > 0:16:43and all the charities that represent women with ovarian cancer
0:16:43 > 0:16:47will be there as well as quite a large group of women with cancer
0:16:47 > 0:16:49who are interested in this topic.
0:16:49 > 0:16:51These have become quite old pals.
0:16:51 > 0:16:54There's usually a party beforehand near Westminster Abbey
0:16:54 > 0:16:55and then we meet for dinner afterwards
0:16:55 > 0:16:57so, yeah, there's a little group of us,
0:16:57 > 0:16:59we call ourselves the Old Ovarians!
0:16:59 > 0:17:02We meet up, have a couple of glasses of wine and dinner.
0:17:04 > 0:17:09We know that survival rates in Wales for ovarian cancer
0:17:09 > 0:17:14are behind survival rates in England
0:17:14 > 0:17:18and I say that, but also want to emphasise that, across the UK,
0:17:18 > 0:17:22we have the worst survival rates in Europe,
0:17:22 > 0:17:29so nobody is doing well, in terms of the UK nations, in ovarian cancer
0:17:29 > 0:17:32but Wales does less well.
0:17:32 > 0:17:36And there is a huge issue around late diagnosis.
0:17:36 > 0:17:42There is an issue around access to clinical trials in Wales.
0:17:42 > 0:17:50And there is, of course, the issue around access to cancer drugs.
0:17:50 > 0:17:56And in ovarian cancer, we have seen very little progress
0:17:56 > 0:18:01in survival rates and treatment options over the past 20 years.
0:18:01 > 0:18:05So it's of desperate concern when there is a life-extending
0:18:05 > 0:18:11treatment available that women in Wales cannot access that treatment.
0:18:13 > 0:18:16I believe that the survival rates for ovarian cancer
0:18:16 > 0:18:19are quite low in Wales compared to the rest of the UK.
0:18:19 > 0:18:23I wondered why you think that is and what should be done about that.
0:18:23 > 0:18:26Well, we first focus on improving outcomes for cancer patients
0:18:26 > 0:18:28on every particular cancer.
0:18:28 > 0:18:31We know that there are particular challenges in different
0:18:31 > 0:18:34tumour sizes and different forms of cancer.
0:18:34 > 0:18:37It's difficult to put your finger on one particular part of it.
0:18:37 > 0:18:39So we will focus on the whole pathway.
0:18:39 > 0:18:42So, what's the point about presentation
0:18:42 > 0:18:45and the recognition of symptoms, so people are referred appropriately?
0:18:45 > 0:18:47What's then the point about...
0:18:47 > 0:18:50Once that referral is done, appropriate diagnostic tests
0:18:50 > 0:18:52and how quickly those are available?
0:18:52 > 0:18:54And then, if there is a diagnosis of cancer,
0:18:54 > 0:18:56the treatment options after that.
0:18:56 > 0:18:58So it's looking at the whole path of it.
0:18:58 > 0:19:00So it's difficult to say that there is only one
0:19:00 > 0:19:03part of that that we need to focus on and, you know, in this,
0:19:03 > 0:19:05we're not being led by politicians determining how to do this,
0:19:05 > 0:19:07apart from the vision and the strategy
0:19:07 > 0:19:09and the overall ambition,
0:19:09 > 0:19:12if you like, to ensure that we improve survival rates
0:19:12 > 0:19:16and outcomes for cancer patients is being led by clinicians themselves.
0:19:16 > 0:19:18And that's one of the most encouraging things, I think,
0:19:18 > 0:19:21is we've got a proper reliance on a network of clinicians
0:19:21 > 0:19:22who are working together,
0:19:22 > 0:19:25who have real ambition, who recognise that, in Wales,
0:19:25 > 0:19:27for all the improvements we've made
0:19:27 > 0:19:30and we should be proud of, we still have a great deal more to go.
0:19:30 > 0:19:33So there's no sense of complacency at all.
0:19:35 > 0:19:38One way of surviving longer is to get on a clinical trial.
0:19:38 > 0:19:41It ensures you get the latest treatment.
0:19:41 > 0:19:43Today I'm at the Welsh Assembly
0:19:43 > 0:19:46for the cross-party group meeting on cancer.
0:19:46 > 0:19:49I come here regularly to get involved in the issues,
0:19:49 > 0:19:51present my argument to the Welsh government
0:19:51 > 0:19:55and talk to clinicians, politicians and civil servants.
0:19:55 > 0:19:59Today, we're discussing the launch of a new cancer research centre.
0:19:59 > 0:20:03I want to ask why Welsh patients are being denied access
0:20:03 > 0:20:06to clinical trials in England which could help them survive longer.
0:20:06 > 0:20:09We need to stop people smoking.
0:20:09 > 0:20:11We need to stop people consuming excess alcohol.
0:20:11 > 0:20:14We need to stop people having an unhealthy diet,
0:20:14 > 0:20:16all those things which we know contribute to cancer.
0:20:16 > 0:20:20Well, my question is, is there anything you can do to,
0:20:20 > 0:20:23whilst you must encourage your patients to go on your clinical
0:20:23 > 0:20:25trials in Wales, is there any way that we can ensure that Wales
0:20:25 > 0:20:28has fair access to clinical trials outside if patients are willing
0:20:28 > 0:20:31and able and would benefit from access to that trial?
0:20:31 > 0:20:34The answer to your question is yes, there are things we can do.
0:20:34 > 0:20:37What we don't want is a situation where only the patients
0:20:37 > 0:20:40who are happy to live close to the centres where those
0:20:40 > 0:20:42trials are happening should be the ones who can get it.
0:20:42 > 0:20:44We want it to be broader than that.
0:20:44 > 0:20:47So what we're trying to do is form a network whereby
0:20:47 > 0:20:50all the centres around the country have all the information.
0:20:50 > 0:20:52For some patients and some treatments,
0:20:52 > 0:20:55close to home isn't possible, either because the patient's
0:20:55 > 0:20:57condition is rare or the drug isn't widely available.
0:20:57 > 0:21:00My experience is patients are happy to travel
0:21:00 > 0:21:04when they need to and so we need to make things available to them.
0:21:04 > 0:21:07We want every patient to come into the clinic and say,
0:21:07 > 0:21:08"Do you have a trial for me?"
0:21:09 > 0:21:13Women are prepared to travel if they are able to,
0:21:13 > 0:21:17to participate in clinical trials.
0:21:17 > 0:21:25I haven't seen the evidence that the Welsh Assembly government
0:21:25 > 0:21:29has for having cancer care on every corner
0:21:29 > 0:21:36and, clearly, we would like to see services close to us,
0:21:36 > 0:21:41but, actually, particularly with less common cancers,
0:21:41 > 0:21:44what you really need to have
0:21:44 > 0:21:49is access to the best possible specialist care.
0:21:50 > 0:21:54I was expecting to go for my last, final appointment
0:21:54 > 0:21:57to go into the clinical trial
0:21:57 > 0:22:01and, sadly, we found out that the cancer was on the return,
0:22:01 > 0:22:05so I am not able to go on my trial.
0:22:05 > 0:22:07I think everything goes through your mind,
0:22:07 > 0:22:13like you can miss your family and your husband and all the tragedy
0:22:13 > 0:22:15that is ahead,
0:22:15 > 0:22:18I think you think very negatively, but hopefully,
0:22:18 > 0:22:22over the course of 24 hours, chatting to my husband,
0:22:22 > 0:22:26he joined me in London, and we, we kind of struggled our way through.
0:22:27 > 0:22:31One of the first things that you do think about is how they're
0:22:31 > 0:22:36going to miss you and that sort of thing, so yeah, yeah.
0:22:36 > 0:22:38And my very next thought was,
0:22:38 > 0:22:42what am I going to do about my patient day on February 2nd?
0:22:42 > 0:22:45Am I actually going to be able to get to it?
0:22:45 > 0:22:47So I quickly wrote down a few notes to myself
0:22:47 > 0:22:51because I need to make some plans so that,
0:22:51 > 0:22:53should I not be able to make it,
0:22:53 > 0:22:55someone would actually delegate for me,
0:22:55 > 0:22:57and it's going to go ahead and it's going to be good.
0:22:57 > 0:23:01But now I almost feel it's all handover,
0:23:01 > 0:23:03it's the last thing I can do.
0:23:03 > 0:23:08And yeah, yeah, it's something for me to think of.
0:23:15 > 0:23:18This morning I'm flying up to North Wales to meet for the first
0:23:18 > 0:23:20time another campaigner, Irfon Williams,
0:23:20 > 0:23:24and invite him to my Patient Voices day.
0:23:24 > 0:23:27Hopefully he'll continue to fight after me.
0:23:27 > 0:23:30Surprisingly, the plane's a plush six-seater
0:23:30 > 0:23:31that's used by celebrities.
0:23:31 > 0:23:35It seems very extravagant, but it's incredibly cheap,
0:23:35 > 0:23:39much less than the car, thanks to the Welsh government's subsidies.
0:23:41 > 0:23:44Irfon Williams lives in Bangor.
0:23:44 > 0:23:45He is a former Welsh Nurse of the Year
0:23:45 > 0:23:48and was diagnosed with bowel cancer.
0:23:48 > 0:23:52He applied four times for funding for a drug which experts said could
0:23:52 > 0:23:55help him, but was refused each time.
0:23:55 > 0:23:59I and others advised Irfon to get an English address, and he did.
0:23:59 > 0:24:01And then he got the drug at a Manchester hospital,
0:24:01 > 0:24:05and it worked, shrinking the tumours so he could have surgery.
0:24:05 > 0:24:07Hello! Hi!
0:24:07 > 0:24:09ANNIE LAUGHS
0:24:09 > 0:24:12Meet you at last in person!
0:24:12 > 0:24:18To be denied payment from the Welsh government for the drug that I
0:24:18 > 0:24:22required, but also to have to travel to England to pursue that drug,
0:24:22 > 0:24:26I found that process the most stressful of all,
0:24:26 > 0:24:31almost feeling as if we were second class citizens,
0:24:31 > 0:24:35begging for funding, begging to be treated.
0:24:35 > 0:24:39And having the same message come back, time and time again,
0:24:39 > 0:24:44no, this drug is not going to be funded by this health board.
0:24:44 > 0:24:50And the reasons given were actually, eventually, financial.
0:24:50 > 0:24:52And to be left during those periods,
0:24:52 > 0:24:55because there were four applications, and each time between,
0:24:55 > 0:24:59your mind would play, you would go through it, you'd be thinking,
0:24:59 > 0:25:00"They can't deny him, how can they deny him?
0:25:00 > 0:25:04"He's got all the genetic tests to show that he'd respond to this drug.
0:25:04 > 0:25:08"He's a young man, he's got a young family, he's got so much to give."
0:25:08 > 0:25:10To be told regularly that I was unlikely to respond
0:25:10 > 0:25:13to this medication whereas, in fact,
0:25:13 > 0:25:20I had experts in England specifying that, actually,
0:25:20 > 0:25:25there was a high chance that I would be able to respond well.
0:25:25 > 0:25:28And then scans at the end of the treatment showed
0:25:28 > 0:25:31a 60% reduction in the tumours both in my liver and bowel.
0:25:31 > 0:25:34And that's a big percentage. It is. It's huge.
0:25:34 > 0:25:39And as a result, the surgeons in the specialist centre in Liverpool
0:25:39 > 0:25:44were happy to offer to operate, and they removed all my tumours.
0:25:44 > 0:25:49And 2? months on, I am in remission. Which is great news.
0:25:50 > 0:25:53That is fantastic news!
0:25:53 > 0:25:58Erm, I think there needs to be some decision that...
0:26:00 > 0:26:03..when we're dealing with people's lives, it's above politics,
0:26:03 > 0:26:04and there needs to be
0:26:04 > 0:26:07some cross-party support and agreement that
0:26:07 > 0:26:10when we're dealing with treatment for cancer or any other
0:26:10 > 0:26:13condition, where there is a requirement for specialist treatment
0:26:13 > 0:26:17then there should be some guidelines, clear guidelines.
0:26:17 > 0:26:19There have been times when I've doubted
0:26:19 > 0:26:20whether I should've gone so public
0:26:20 > 0:26:22and whether we should have complained or
0:26:22 > 0:26:25whether I should have just gone quietly and had my treatment.
0:26:25 > 0:26:28However, the amount of people that have been made aware now
0:26:28 > 0:26:32of the situation, and they are starting to question
0:26:32 > 0:26:35medics, locally, it is incredible.
0:26:35 > 0:26:38I've brought the flyers for the day in February.
0:26:38 > 0:26:40We've mentioned it on the phone.
0:26:40 > 0:26:42And the invitation, if you are well enough.
0:26:42 > 0:26:46I think the good thing about this is, actually, that the
0:26:46 > 0:26:49patients actually have a voice, and it's about time people
0:26:49 > 0:26:52started listening to the patients' voice.
0:26:52 > 0:26:54It was incredible to come up to North Wales
0:26:54 > 0:26:55and to get to chat to them
0:26:55 > 0:26:57and actually find out
0:26:57 > 0:27:00we just had the same experiences in North and South Wales.
0:27:00 > 0:27:04Particularly, he mentioned the lack of transparency that needs to be
0:27:04 > 0:27:09addressed and the need to empower patients to be asking the questions.
0:27:11 > 0:27:15I think the game of this disease is not to think too emotionally
0:27:15 > 0:27:19about things. Yes, it could be my last Christmas,
0:27:19 > 0:27:23but I live for the day, and I try not to let that affect
0:27:23 > 0:27:26how I enjoy the Christmas.
0:27:26 > 0:27:27THEY LAUGH
0:27:27 > 0:27:31My health still took a bit of a bashing on Christmas week
0:27:31 > 0:27:34in that I suddenly developed a sore leg,
0:27:34 > 0:27:36so we had to spend a day in A
0:27:36 > 0:27:39and I flew off to Rome on Boxing Day.
0:27:39 > 0:27:42At the moment I am not very keen on having any more treatment because,
0:27:42 > 0:27:46as you can see, my hair's only just starting to grow after the last lot.
0:27:46 > 0:27:47I'm only just recovering.
0:27:47 > 0:27:50And after the last lot of treatment didn't work at all,
0:27:50 > 0:27:53I'm not so sure it's a good idea to have any more.
0:27:55 > 0:27:57Rebecca from Target Ovarian Cancer and I have come round
0:27:57 > 0:27:59to check out the Pierhead Building
0:27:59 > 0:28:01because I've never organised anything like this.
0:28:01 > 0:28:03I've never organised anything like this.
0:28:03 > 0:28:06We've got 27, 28 charities coming with their stands.
0:28:06 > 0:28:08We've got patients, we've got Assembly Members, we've got
0:28:08 > 0:28:11people from the NHS, so we need to make sure that we've got
0:28:11 > 0:28:13room for everyone, the catering's sorted out,
0:28:13 > 0:28:15meeting and greeting.
0:28:15 > 0:28:17This is a really great space.
0:28:17 > 0:28:19I hadn't realised when I started organising something,
0:28:19 > 0:28:22but this is actually for the people of Wales to have their say
0:28:22 > 0:28:25to the Welsh Assembly office, which is just there.
0:28:27 > 0:28:29They'll take photos of members of you there
0:28:29 > 0:28:31and that's your panel.
0:28:31 > 0:28:33So the real focus of this event is a question and answer session
0:28:33 > 0:28:36for patients to ask each of the health spokesmen -
0:28:36 > 0:28:40what will their party do for cancer services in Wales
0:28:40 > 0:28:41if they get in?
0:28:41 > 0:28:44And so we've got four party spokesmen from the main parties.
0:28:44 > 0:28:45We've got the NHS to come in,
0:28:45 > 0:28:48we've got patient experience managers coming,
0:28:48 > 0:28:51we have the clinical doctor of the Velindre
0:28:51 > 0:28:53and then we have about nearly 40 patients
0:28:53 > 0:28:58and other interested people, so it's quite a mix of people.
0:28:58 > 0:29:01Today, suddenly, everything's falling into place.
0:29:03 > 0:29:07Good morning Wales, it's seven o'clock on Tuesday 2nd February.
0:29:07 > 0:29:08This is Peter Johnson and Oliver Hides.
0:29:08 > 0:29:10Good morning. Our top stories this morning...
0:29:10 > 0:29:14Well, early start this morning. Up at five and getting ready
0:29:14 > 0:29:19for the Voices event which starts at half past ten this morning.
0:29:19 > 0:29:21So I'm sort of hanging around
0:29:21 > 0:29:25waiting for BBC Wales radio to ring me to do a bit of a radio interview
0:29:25 > 0:29:28to tell people in Wales what the event's about.
0:29:28 > 0:29:29PHONE RINGS
0:29:29 > 0:29:31And there's the phone, probably.
0:29:31 > 0:29:33Hello, Annie speaking.
0:29:33 > 0:29:37Well, today, cancer patients from across Wales join together to
0:29:37 > 0:29:39make their voices heard at the Senedd.
0:29:39 > 0:29:41The event's been organised by Annie Mulholland.
0:29:41 > 0:29:44She's on the line now. Morning, Annie. Good morning.
0:29:44 > 0:29:47Now, tell me, Annie, first of all, what are you hoping to do today?
0:29:47 > 0:29:48What's this about?
0:29:48 > 0:29:51I think what cancer patients want more than anything
0:29:51 > 0:29:53is that we all want to be treated fairly.
0:29:53 > 0:29:55And we don't want to feel in Wales that we have more than anyone
0:29:55 > 0:29:58else, but equally, we don't want other people in other
0:29:58 > 0:30:01parts of the UK to have more than us, either.
0:30:01 > 0:30:03Well, I'm having to keep my legs up now
0:30:03 > 0:30:05because I've got what's called lymphoedema,
0:30:05 > 0:30:07so I've got one enormous leg and one normal leg here.
0:30:07 > 0:30:09And the only thing we can do to try
0:30:09 > 0:30:12and manage it at the moment is to keep my leg up.
0:30:12 > 0:30:16But unfortunately, I've sort of embarked on doing this event today,
0:30:16 > 0:30:19so I won't be having my leg up as much as I should.
0:30:19 > 0:30:23I've got some morphine I take morning and afternoon
0:30:23 > 0:30:25and I can take another squirt.
0:30:25 > 0:30:28If the pain gets too bad I can take a little extra
0:30:28 > 0:30:30and that's quite necessary for a day like today.
0:30:40 > 0:30:42Oh, Annie is absolutely a star.
0:30:42 > 0:30:45She's pulled this all together herself, basically.
0:30:45 > 0:30:48And without her, this would not be happening.
0:30:48 > 0:30:49Annie's amazing.
0:30:49 > 0:30:51She's an absolute inspiration,
0:30:51 > 0:30:54the way she's driven forward the interests of patients in Wales.
0:30:54 > 0:30:57It's absolutely fantastic.
0:30:57 > 0:31:00For Annie to get so many charities in the same room,
0:31:00 > 0:31:02that's a triumph in itself.
0:31:03 > 0:31:06And to get so many like-minded people,
0:31:06 > 0:31:10that's a huge fillip to us as cancer patients, you see.
0:31:10 > 0:31:13Well, I've just come in from outside doing a TV clip
0:31:13 > 0:31:16and I'm slightly overawed there's so many people here.
0:31:16 > 0:31:19And people are coming up and saying hello.
0:31:19 > 0:31:21Yeah, have you got a Kleenex?!
0:31:21 > 0:31:23THEY LAUGH
0:31:23 > 0:31:25I had great hopes for today.
0:31:25 > 0:31:28From a personal experience, I need to hand over.
0:31:28 > 0:31:30There have been some incredibly knowledgeable
0:31:30 > 0:31:35and active campaigners in Wales, but their campaigns died when they die.
0:31:35 > 0:31:38I'd like to think this event builds on the shared experience
0:31:38 > 0:31:41of all the patients in the room today and all the stakeholders
0:31:41 > 0:31:45and that an event of this nature might continue as a legacy
0:31:45 > 0:31:48to achieve greater patient participation
0:31:48 > 0:31:51and engagement in the future of the NHS in Wales.
0:31:56 > 0:31:58Yes, I think campaigning does work.
0:31:58 > 0:32:01The drug that I received in England, obviously, Cetuximab,
0:32:01 > 0:32:05is now available in Wales for cancer patients with bowel cancer.
0:32:05 > 0:32:09The first question is going to be to Ann Whelan.
0:32:09 > 0:32:12Waiting lists for CT scans are growing.
0:32:12 > 0:32:15What will your party do about this?
0:32:15 > 0:32:21Could they not look at a way forward to develop patient input?
0:32:21 > 0:32:24Us, as patients, would benefit from England and Wales
0:32:24 > 0:32:26having the same drugs, so that we aren't
0:32:26 > 0:32:31put into the dilemma of having to move over the border.
0:32:31 > 0:32:34There was engagement from all the stakeholders,
0:32:34 > 0:32:39the Assembly Members, the NHS, the third sector, the patients.
0:32:39 > 0:32:42And there's a will to go forward.
0:32:42 > 0:32:46You did brilliantly. Mmm! You must be pleased. Are you pleased?
0:32:46 > 0:32:49I'm feeling a bit overawed at the moment.
0:32:49 > 0:32:51We've never had this in Wales, ever.
0:32:51 > 0:32:53I've been to so many things.
0:32:53 > 0:32:56We've never had this in Wales.
0:32:56 > 0:32:59It couldn't have been done without a lot of people,
0:32:59 > 0:33:00but most particularly my family.
0:33:00 > 0:33:03And Hannah, in fact, was up to I don't know what time last night
0:33:03 > 0:33:05making those conference packs.
0:33:05 > 0:33:07Becky was such a talented MC.
0:33:10 > 0:33:13'I'm really pleased the Health Minister, Marc Drakeford, came.
0:33:13 > 0:33:16'It was a great endorsement.
0:33:16 > 0:33:18'I met him three years ago to discuss ovarian cancer
0:33:18 > 0:33:23'and asked for an ovarian cancer public awareness campaign in Wales.
0:33:23 > 0:33:25'Now I've been told it's going to happen this year,
0:33:25 > 0:33:27'which is wonderful news.
0:33:27 > 0:33:31'I hope this isn't just a one-off concession to one campaigner.
0:33:31 > 0:33:35'All I've shown is that patients can contribute constructively to
0:33:35 > 0:33:38'improving health services in Wales for all.
0:33:38 > 0:33:41'I would still advise Welsh patients to go to England
0:33:41 > 0:33:44'to get treatment that will prolong their lives
0:33:44 > 0:33:46'if it is the only option available to them.
0:33:46 > 0:33:49'But they won't need to go if, together,
0:33:49 > 0:33:52'we can eradicate the unfairness in the system.
0:33:52 > 0:33:55'I've come to the end of my treatment
0:33:55 > 0:33:57'and there are very few options left.
0:33:57 > 0:34:01'So, if I've helped move Wales forward towards fairer health care
0:34:01 > 0:34:05'then something good will have come out of dying with cancer.'
0:34:05 > 0:34:07Oh, it's sunny! I know!