Cofnod y
Trafodion
The
Record of Proceedings
Cynnwys
Contents
4....... Deisebau Newydd
New Petitions
9....... Y Wybodaeth
Ddiweddaraf am Ddeisebau Blaenorol
Updates to Previous Petitions
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle y mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.
The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.
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Aelodau’r pwyllgor yn
bresennol
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Gareth Bennett |
UKIP Cymru
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Janet Finch-Saunders |
Ceidwadwyr Cymreig
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Mike Hedges |
Llafur
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Neil McEvoy |
Plaid Cymru
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Eraill yn bresennol
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Jenny Chapman |
Cyd-ddeisebydd Co-petitioner
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Margaret Hutcheson |
Deisebydd Petitioner
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Swyddogion Cynulliad Cenedlaethol Cymru yn
bresennol
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Jonathan Baxter
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Gwasanaeth Ymchwil Research Service
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Jessica England |
Dirprwy Glerc
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Graeme Francis |
Clerc
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Kath Thomas
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Dirprwy Glerc
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Katie Wyatt |
Cynghorydd Cyfreithiol |
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[19] Mr Francis: Yes, although the paper you’ve got says that 99 signatures have been received for that, the paper signatures being handed in total 750—at lunch time.
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[20] Neil McEvoy: So, it’s 12.00 p.m., is it?
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[21] Mike Hedges: Yes, 12.40 p.m. In light of the petition and speaking as somebody who drives that road not regularly but occasionally, I could almost declare an interest as you can get awfully stuck on it. The suggestion is that we write to the Cabinet Secretary seeking a specific timetable for the review that his officials are currently undertaking and asking that the committee is informed as soon as the outcome is known.
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[22] The other option is: in light of the additional information received from the petitioner, Members might wish to draw specific comments requesting a study into the provision of safe overtaking lanes to the attention of the Cabinet Secretary and ask that they are taken into consideration when undergoing the review. Any preference, or—
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[23] Janet Finch-Saunders: Sorry I’m late.
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[24] Mike Hedges: No problem. Any preference, or merge them?
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[25] Gareth Bennett: We could do.
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[26] Mike Hedges: Yes, merge them. We’ll ask for a timetable and ask that that specific item is taken into consideration. Yes, okay.
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[27] The next one is ‘EMA Attendance Requirements for Young Adult Carers’. We’ve written to the Minister and we’ve had a response. We haven’t had a further response back from the petitioner. I think that we’ve seen that the Minister’s response is very positive. Shall we await the views of the petitioner to give them a chance to reply back? The Minister has responded very favourably to, I think, something that probably people hadn’t thought of until the petition came in. Okay, is everybody happy with that?
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[28] Gareth Bennett: Yes.
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[29] Mike Hedges: ‘Proposal to Postpone the Restrictions on Fishing in Welsh Rivers’. Again, we’ve written to the Cabinet Secretary and had the response. The petitioner has sent further comments, which are in the papers for the meeting. What action do we want to take?
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[30] Gareth Bennett: Pass it on to the Minister for fisheries.
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[31] Mike Hedges: We’ve already written to the Minister.
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[32] Gareth Bennett: Oh, sorry.
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[33] Mike Hedges: We’ve written to the Minister and the Minister has responded.
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[34] Gareth Bennett: Right.
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[35] Mike Hedges: We can either—. The petitioner has submitted further comments, so we can actually send the petitioner’s further comments to the Minister.
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[36] Mr Francis: The letter from the Minister informs us that there’s a Natural Resources Wales consultation due at some point either later this year or early next year, and that’s where—. So, there’s going to be further consultation, so you may wish to just let that run its course.
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[37] Mike Hedges: Yes, we’ll let it run its course, but can we send the petitioner’s letter on to NRW, so that they’ve got it ready for their consultation?
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[38] Mr Francis: Yes.
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[39] Mike Hedges: Okay.
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[40] Mr Francis: Do you want to close the petition?
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[41] Mike Hedges: Yes, close the petition and just write on.
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[42] The next one—at least three of us have an interest in this—is ‘Keep our Councils Rejuvenated by Introducing a Fixed Term’.
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[43] Janet Finch-Saunders: This would be unprecedented, I mean—.
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[44] Mike Hedges: Well, I don’t think it would be fair on the electorate. Many of us have been elected. If the electorate don’t want us, they’ve got an opportunity to remove us, but stopping people being a candidate, unless they’ve committed an offence, I think is fundamentally wrong. It’s up to the electorate. I mean, they may or may not want us to continue and we’ll discover that in just under five years’ time, but it’ll be their decision and it’s the same with the local authorities. A number of councillors will discover next May whether the electorate want them to carry on or not, but that will be the electorate’s decision; I don’t think we should interfere with the electorate’s decision.
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[142] At a reading of my petition in February, one of the panel mentioned his car had a yearly MOT—why can’t women? The cost of treatment far outweighs the cost of screening, in my opinion, not forgetting the cost to the patient of horrendous treatment and hospital appointments, which are never-ending. I do know this because my friend spends more time back and forth to the hospital than she does having a social life. Also, one of my nursing friends, who used to be a chemotherapy nurse, actually spent her retirement money—. She retired at 55 at the end of March and in the August she was diagnosed with between grade 3 and grade 4 ovarian cancer. She paid for Avastin out of her pension money—and it cost her a lot of money—because she wasn’t able to have it in Cardiff.
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[143] There are lots of other things that I’ve written in my letters, if you want to ask me questions about them. These are just some of the smaller points.
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[144] Ms Chapman: Are there any questions, please?
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[145] Mike Hedges: Any questions? Shall I start? One thing with screening, and all screenings, is that you can get false results and it can lead to concerns. What, do you think, is the likely possibility of people getting false results and being treated, or are having concerns that they shouldn’t have?
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[146] Ms Hutcheson: Right. Well, when they check your CA125, the cut-off point there is 35. So, if it was way above there I think then they may refer somebody on for perhaps a transvaginal scan or an ultrasound scan. I do know that a CA125 can give a false reading because you could have an infection or perhaps something else wrong, but to err on the side of caution they could do a scan.
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[147] Mike Hedges: Neil first and then you, Janet.
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[148] Neil McEvoy: I’ll come back in a bit.
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[149] Mike Hedges: Janet, you can go.
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[150] Janet Finch-Saunders: The UK national screening committee doesn’t currently recommend—
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[151] Ms Hutcheson: No, it doesn’t.
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[152] Janet Finch-Saunders: Why do you think that they are saying that they don’t recommend it?
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[153] Ms Hutcheson: So much money is pumped into research. They like the money coming into—I am being very cynical here—they like all the money that’s coming into research. They’ve got the results in front of them and, in fact, the BBC have said, ‘Blood test “boost” in ovarian cancer fight’, and that regular blood tests can detect 86 per cent of ovarian cancers. It’s up to them. Basically, it’s all down to funding. I know this.
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[154] Janet Finch-Saunders: I’m a great believer in prevention.
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[155] Ms Hutcheson: So am I.
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[156] Janet Finch-Saunders: You know, because nine times out of 10 with anything, the sooner you pick it up—
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[157] Ms Hutcheson: Yes, exactly.
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[158] Janet Finch-Saunders: —certainly for the patient, there’s a greater chance of survival.
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[159] Ms Hutcheson: Exactly.
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[160] Janet Finch-Saunders: But also, if you’re looking at resources, again, the sooner you pick something up, rather than having to deal with the aftermath—
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[161] Ms Hutcheson: Well, exactly. And this is my argument: you know, it’s a cheap test and it can save lives.
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[162] Ms Chapman: At the end of the day, I think a lot of women—and I speak for myself, personally—would be willing to pay the £25 themselves. If you were really hard up—and I discussed it with my daughter the other day—you could save £5 a week until you had the cost of the test, as long as it was made available to them on the NHS to have it for the price that the NHS pays.
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[163] Janet Finch-Saunders: Yes. I have to be honest with you, I think I’d feel more confident that that was available to me.
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[164] Ms Hutcheson: Yes. Exactly. I agree. But the thing is, you see, women are not aware of ovarian cancer, and this is the problem. The message just isn’t out there in the media. To think it’s acceptable just to put one of those in a doctor’s surgery, or it could be in supermarkets or something—get real, it’s not going to happen.
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[165] Ms Chapman: How many times have you been in the doctor’s surgery and you would go up and look at the board and say, ‘What’s on the board this week, then?’? It doesn’t happen.
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[166] Ms Hutcheson: It’s just not happening. I have phoned friends of mine who are over 50 and told them to go to their GP and ask for a test. I don’t know if you’ve read it in one of my letters, a friend of mine—. I’ve got a photograph here. There are four of us. This was my sixtieth birthday party. Two of them—Karen died at the age of 57; Jackie was diagnosed a year ago and she was grade 4, which is the highest. You know, she had no chance. She’s dying now. She knows it. It’s gone to her liver. There’s no chance. But, you know, none of them were aware of it. Even in the nursing profession they’re not aware of just how—. The fact is, if you’ve got your ovaries in situ, you are at risk. There’s no doubt about it. They say it’s familial. Well, it can be, but in all my friends’ cases it wasn’t. It wasn’t in the family; they were just diagnosed. They were just unfortunate; they were diagnosed with it.
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[167] Mike Hedges: Neil.
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10:15
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[168] Neil McEvoy: First, I’d like to thank you for starting the petition and coming here today, because it’s certainly enlightening. I wondered if you have any idea—if you haven’t, then we will be able to find out—what the up-front cost would be to introduce screening. Have you any idea on that?
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[169] Ms Hutcheson: Well, like I say, the blood test is between £20 and £25.
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[170] Neil McEvoy: It would be good if we could write to the Minister and maybe put a figure on what the cost—
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[171] Mike Hedges: We’ve got the Minister coming either next time or the time after, so we will be able to ask the Minister exactly those questions.
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[172] Neil McEvoy: I think, ultimately, we’d save money—
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[173] Ms Hutcheson: Absolutely.
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[174] Neil McEvoy: —because you wouldn’t have the rear-guard action of trying to cure the cancers.
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[175] Ms Hutcheson: Exactly, but it would need to be done on a yearly basis because, you know, I don’t know if they have done enough research into finding out how—. I know that one of the girls that I meet up with—she’s another nurse—had been part of the UKCTOCS study. Then they stopped screening her, and, about a year later, she presented with a lump and went to a GP. Unfortunately, the GP did a CA125 straight away and found that she did have it, but it had spread. This is the problem. I don’t know what the figures are of how quickly it spreads. Perhaps they don’t know; I don’t know.
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[176] Neil McEvoy: One thing that I’d like as well is maybe your permission to reproduce this footage and package a video to put out on social media, if that would be okay.
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[177] Ms Chapman: That would be good.
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[178] Ms Hutcheson: Okay, yes.
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[179] Neil McEvoy: Okay, we can do that.
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[180] Ms Hutcheson: But one of my friends as well—Jackie, who’s very ill at the moment—. When she told me her diagnosis—she has got two daughters in their 40s—I suggested that she get her daughters to go to their GPs and ask for a CA125. It’s written in my letter. The one daughter went to her GP, and the GP said, ‘Well, your mother’s got to die of something.’ Now, that was appalling. The GP wouldn’t do the CA125 on her and said, ‘You can have it done privately.’ So, Yvonne went to Spire and they said, ‘Oh, well, we can’t do it because we haven’t had a GP referral letter’. So, then she had to go back to the GP. This is so unacceptable.
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[181] Then, her other daughter, who is a bit younger, went to her GP. The GP did a CA125. It was raised to 55, so they sent her for a scan. So, you know, different GPs. This is what’s frightening. I think a lot of GPs are not really—. Not many GPs actually see a case of this. Sometimes, in their whole working life, they’ll see perhaps two. But, you see, most of these are diagnosed in accident and emergency departments. You know, they go there, with trauma, in a crisis. I know that has happened because I know somebody who was dead within a year with it. So, you know—. I suppose I’ve come across too many people with it. I think this is why I’m quite concerned.
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[182] Ms Chapman: I suppose the point is that, once they’ve reached the point where they are able to be diagnosed, it is too late.
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[183] Ms Hutcheson: It’s too late, and it’s spread.
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[184] Ms Chapman: That’s the frightening thing.
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[185] Ms Hutcheson: That’s what’s so awful about it, yes.
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[186] Ms Chapman: Maybe one option to offer GPs if cost is an issue to them is that they send a standard letter out to all women over 50, inviting them to the surgery to have the test done and just saying, ‘You can have the test done at your own cost, which is £20 or £25’. Even if the surgery subsidised it and paid half, and the patient paid half—that’s another way around it.
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[187] Ms Hutcheson: I think women would be able to afford between £20 and £25, but they’d have to have a letter inviting them because, as I say, they don’t know about it. You never see television programmes about it. Breast cancer is just—. Obviously, there are so many more people diagnosed with breast cancer. But, over the years, because so much money has been spent on research and treatment, and since Herceptin was prescribed, they have a much better prognosis, whereas ovarian cancer women don’t. That’s the frightening part about it.
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[188] Mike Hedges: Anyone else?
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[189] Gareth Bennett: What did the—? You mentioned the well women’s clinics that they used to have in GP surgeries. What services did they provide?
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[190] Ms Hutcheson: I’m not too sure. I suppose things like gynaecological ones, the pill. I suppose a lot of women years ago went to—. And HRT. Those kinds of things.
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[191] Gareth Bennett: So, there never was a situation where they would have had these scans?
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[192] Ms Hutcheson: No, not for ovarian—. Not to my knowledge.
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[193] Ms Chapman: They do smears and that sort of thing, and they do pelvic examinations.
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[194] Ms Hutcheson: They did, actually, yes; I think they did quite a lot of things.
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[195] Ms Chapman: So they could have picked up if there was inflammation within the pelvis. If somebody had ovarian cancer, then they could quite possibly have picked up that maybe there was a mass there, and sent them for a scan. But that was—you know, that would have been better than nothing. At least women were being examined.
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[196] Ms Hutcheson: They were looked at.
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[197] Ms Chapman: And looked at, yes.
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[198] Gareth Bennett: I think that, obviously, this is a major area of concern, but, as you pointed out yourself, a lot of it is what can be afforded.
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[199] Ms Hutcheson: I know; I don’t understand it.
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[200] Gareth Bennett: So, the more—. There’s been a kind of understanding here that there may be a possibility that, if you take early action, the costs are actually smaller in the long run, but, of course, the more facts and figures we get on that, or the relevant Minister gets, then the better the case we can make.
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[201] Ms Chapman: When you look at the costs of whatever it costs to provide the cancer treatments, the scans, I know, cost hundreds of pounds; in-patient treatment when they’re admitted at the end—you know, towards the end, it’s going to be huge.
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[202] Gareth Bennett: Do we have any total kind of—? Does any organisation have any total figures or projections for this kind of thing?
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[203] Ms Hutcheson: You’d have to get that really from Velindre, which is where they get treated.
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[204] Ms Chapman: It’s going to be vastly more than £25. You’re looking at thousands probably—the cost of the drugs alone.
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[205] Janet Finch-Saunders: In terms of statistics, how far behind other parts of the UK are we here?
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[206] Ms Hutcheson: Well, they say Wales has the worst outcome for cancer and heart disease.
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[207] Janet Finch-Saunders: So higher morbidity rates because of—
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[208] Ms Hutcheson: Yes. I don’t know why.
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[209] Janet Finch-Saunders: Have we got figures for that?
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[210] Ms Hutcheson: I’m sure there must be figures, because they’ve stated that on many occasions—that Wales really are behind. Denmark are pretty poor as well.
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[211] Janet Finch-Saunders: You’ve raised some awareness in me, because I have to confess that I always thought the smear picked up—
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[212] Ms Hutcheson: I know; women do, but it doesn’t.
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[213] Janet Finch-Saunders: You get your result—fine.
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[214] Ms Hutcheson: I know; I know, and it doesn’t. It doesn’t. The smear is for cervical cancer. This is just completely hidden; it’s a silent killer, and nothing’s being done about it, really. How many women were aware of the UKCTOCS report? Only the ones who were actually on the study. Everybody else wouldn’t have known. When I first spoke to Kath, you weren’t aware, were you? So, you see—.
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[215] Janet Finch-Saunders: It’s quite scary, really.
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[216] Ms Hutcheson: It’s quite frightening.
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[217] Janet Finch-Saunders: So, how can we now, as a Petitions Committee, look to further some more work on this?
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[218] Mike Hedges: We’re going to get the Minister in. I’ve been now told that it’s the next meeting; I knew it was one of the next two meetings—it’s the next meeting. We’ve had this information from Margaret Hutcheson today and it’s an opportunity then for using that information when we question the Minister next week—in a fortnight’s time. I’ve got a couple of questions as well that I’d like to ask. You’ve said that the results and survival rates are better in Europe. Do you know why?
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[219] Ms Hutcheson: No. I’ve been on the internet to find out why, because they don’t have screening, but I think they’re referred a lot earlier for things. I don’t think they have to wait around for scans like they do here. So, I think there are different reasons why—
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[220] Janet Finch-Saunders: It could be lifestyle.
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[221] Ms Hutcheson: —they have better outcomes.
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[222] Mike Hedges: I think that one thing everybody wants is to improve outcomes, and everybody wants to see people surviving cancer. So, I think what we’re looking at, and we have to perhaps ask others—. If Europe is doing better without having blood tests, how is it doing better without doing blood tests? The other question is: do you know what’s happening in North America and Australia and other countries similar to us?
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[223] Ms Hutcheson: Now, it’s interesting, because, as I say, I used to be a palliative care nurse, and I worked night duty in the 1980s, and one of the doctors on my ward had done some sort of elective experience in Canada, in North America and Canada. And the women there were actually going in for elective surgery when they were 50. Because they knew they weren’t going to have any more children, they were actually going in and having their ovaries removed, because they obviously knew they were at risk. I hadn’t heard of anything; I was in my 30s at the time, and I sort of put on the back boiler, but it was only when, all of a sudden, this sort of became in my face with all my friends being diagnosed that I remembered what he’d said. It’s private healthcare over there, so I suppose—. But, then, perhaps women are far more aware of it. It does raise issues doesn’t it?
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[224] Janet Finch-Saunders: Chair, how do we get this as a debate in Plenary then from this committee?
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[225] Mike Hedges: Well, I think you’re jumping a little ahead because we want to get the Minister’s response. When we have the Minister’s response, we may or may not want to ask somebody from Velindre hospital to come along and talk to us. But this is prejudging what’s going to happen in a fortnight’s time. If, at the end of this, we’re not satisfied that the Minister is taking the appropriate action, then there’s an opportunity for us to put it forward for a debate at Plenary. But we’ve heard from Margaret Hutcheson today, and we’ll hear from the Minister in a fortnight’s time. We’ll then have a mop-up at the end after hearing from both of those, because I think that what you’ve said to us today will inform many of the questions we may want to ask in a fortnight’s time. And that itself then will allow us to—
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[226] Janet Finch-Saunders: It’s the awareness, if we can get it in the Chamber, though.
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[227] Mike Hedges: Yes.
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[228] Neil McEvoy: Can you write to the Minister and ask for figures, so he could come here with the figures, rather than—?
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[229] Mike Hedges: Yes. I think that—.
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[230] Neil McEvoy: That would be good.
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[231] Mike Hedges: What I was going to suggest—. If there are no other questions, can I say what I’m going to suggest at the end? I’m going to thank Margaret Hutcheson and—
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[232] Ms Hutcheson: Can I make just one more point? I know the doctors in Velindre, they’re focusing on this awareness campaign, they really are; they’re not focusing on screening, I can tell you that now.
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[233] Mike Hedges: Okay. Well, first of all, can I thank you for coming along? I’m sure that the Minister, or the Minister’s staff, will have listened to our discussion this morning. But, even so, I think there’s a number of points that have been made by the witnesses in terms of questions from Members, and if we could perhaps ask the Minister if the Minister can respond to those prior to us seeing her in a fortnight’s time, and then we’ll be able to raise further points on those answers. But it would be easier to have the answers to the points you’ve raised then, and perhaps it might also be possible if we could write to Velindre hospital and ask them if they’ve got any views on why survival rates are lower in Wales than they are in continental Europe.
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[234] Ms Hutcheson: Interesting.
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[235] Mike Hedges: Is everybody happy with that? And, depending what happens then, we may wish to try and trigger a debate in the Chamber. But we really need to find out. If the Minister says, ‘I’m about to start implementing some of the suggestions you’ve made’, us having a debate would be a bit of a waste of time. If, however, we don’t get a positive response, then that may be an opportunity for us to ask to generate a debate on it. Is everybody happy? Okay.
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[236] Thank you very much for coming along. It’s been very informative. As they often say at these stages, I’ve learned a lot of things I didn’t know before, and I’m not necessarily happier for the knowledge. [Laughter.] So, thank you very much.
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[237] Ms Hutcheson: Thank you.
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[238] Ms Chapman: Thank you for your time.
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[239] Mike Hedges: Can I remind people of the petition handovers today? I’ve got it written down here. There’s one at 12:40, on the A487 trunk road between Cardigan and Aberystwyth. There’s one at one o’clock from the petition on Circuit of Wales, and there’s one at three o’clock—or two at three o’clock—on ensuring disabled people can access public transport as and when they need it, and to introduce maximum waiting and improved training for staff dealing with housing adaptation applications; the fourth being handed in by Whizz-Kidz. So, 12:40, one o’clock and three o’clock, and they’ll all be on the ground floor, on the next floor up.
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[240] Mr Francis: On the steps of the Senedd, as it’s good weather.
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[241] Mike Hedges: But not outside. No, we have problems when we go outside.
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[242] Mr Francis: Okay.
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[243] Mike Hedges: Okay.
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[244] Gareth Bennett: Sorry, Chair, the problem that we’ve got is when we’ll be in Plenary. Can you give us a shout at the time, and we might be able to do it then?
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[245] Janet Finch-Saunders: Yes, send me a message.
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[246] Mike Hedges: Yes, I’ll send you all a message.
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[247] Neil McEvoy: Can I make my apologies for the one o’clock one?
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[248] Mike Hedges: Pardon?
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[249] Neil McEvoy: The one o’clock one.
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[250] Janet Finch-Saunders: Yes, I can’t do the one o’clock.
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[251] Mike Hedges: Oh. It’s just that—. I’ll be at all of them; it’s just an opportunity for Members who are available to come along. There’s no pressure on you to come along. I think that, if we are a committee, then we are a committee as a group of people, not a Chair and three others, and I believe that anybody who wants to come along should come and see all of us, and we should all be treated equally.
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[252] Janet Finch-Saunders: Yes, right. So, if you could just remind us.
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[253] Mike Hedges: I will. Thank you very much.
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Daeth y cyfarfod i ben am 10:29. |