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Appendix A
Health and Public Services Committee: Transcript of Focus Group on
Breast Cancer Screening and Treatment
30 October 2007
Joanne McCartney (Chair): Can I firstly thank you for coming in today. I will just
introduce myself: my name is Joanne McCartney and I chair the London Assembly’s
Health Committee here at City Hall.
Elizabeth Howlett (Deputy Chair): I am Elizabeth Howlett. I am the Deputy Chair of the
Committee here.
Joanne McCartney (Chair): In a minute I will just ask everyone to go round and just say
who they are, if you do not mind. I do not know if many of you know about the work we do
here so it might be sensible for me, for a couple of minutes, just to explain why you have had
to come today and help us out.
The Health and Public Services Committee investigates health issues in London, and the
reason why we are looking at breast cancer screening and access to radiography services in
particular, is because there has been some recent reports out to say that the take up of
screening in London is particularly low compared to national averages, and also the waits
for follow-up treatment may be longer as well, so we thought that was an issue that we
should look at.
This is the first stage of our investigation into this. We have written to all NHS
(National Health Service), PCTs (Primary Care Trust) and Trusts, asking for their views on
this as well. We have written to various cancer organisations and medical personnel. One
of the things we are always very keen on doing is getting the views of the people who
actually use the services, because we often find that that actually provides the best evidence
that we can have. It is often very clear that it is only people that use the services who
actually know where the faults or where improvements could be made. We have used this
format before when we did some work into neonatal services. We had in a group of mothers
who had problems with premature babies. They made some really good recommendations to
us about how we could improve services. From incorporating their views into our report,
we actually had some changes made in the NHS in London about accompanying babies in
emergency transit, and about information packs and information that was given to mums
who were going through labour and so forth, with those problems. So we hope that we can
replicate again and get some really useful information from you.
We have some questions that we want to ask but we do not want to be formal about it, so we
prefer having a discussion. Please jump in if you want to add something to what somebody
else has said, because I think that often makes for better information for us.
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So can we go round to explain a little bit about each of you, what you do, and where you
come from.
Susan Hurcombe (Assistant Scrutiny Manager): My name is Sarah Hurcombe. I am the
Assistant Scrutiny Manager here. I assist Joanne [McCartney] and Elizabeth [Howlett] in
carrying out their work, and I help them with research and set up meetings like this.
Susan Thatcher (Committee Administration): I am Susan Thatcher. I provide
administrative support to the Committee, so I am responsible for general support including
distributing letters and reports, collating evidence and organising meetings such as this.
Verite Reilly Collins: I am Verite Reilly Collins. I am a patient and think perhaps I ought
to say an expert patient because if you are treated for cancer, particularly in London, you
have to find out an enormous amount for yourself.
D. Slade: I am D. Slade. I am a patient. I live in Eltham but I was treated up in London, at
Guys.
Jolly Weathers: I am Jolly. I provide peer support for Breast Cancer Care. So far I am a
survivor and I live in Battersea, South-West London.
Helena Green: I am Helena Green. I am a member of Breast Cancer Care and have been a
volunteer since 1994. I was diagnosed in 1992 and I live in Lewisham.
Anita Gray: I am Anita Gray. I am also a volunteer for Breast Cancer Care - I have been
for the last six years. I was diagnosed 11 years ago and I am still around, unlike many
members of my family. I live on the borders of Putney and Wimbledon.
Chris Quince (Policy and Campaigns Assistant, Breast Cancer Care): I am
Chris Quince. I am Policy and Campaigns Assistant at Breast Cancer Care so I help
facilitate people living with breast cancer and taking part in the work that we do.
Anna Wood (Head of Policy and Campaigns , Breast Cancer Care): I am Anna Wood. I
am the Head of Policy and Campaigns at Breast Cancer Care. I am involved in managing the
work that we do around policy and campaigning and making sure that the views of people
with breast cancer as much as we, as an organisation contributes to issues being discussed
like today.
Joanne McCartney (Chair): That has been very helpful and thank you for helping us with
this. I know that you are putting a survey on your website as well so that all the women can
feed into this investigation as well, so that is going to be very useful for them.
Can I start off, then, by asking you about your experience of breast cancer screening. Did all
of you go for screening or have you since or …?
D. Slade: I was diagnosed as a result of screening.
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Verite Reilly Collins: So was I.
D. Slade: I nearly did not attend the appointment because the letter that arrived I threw in
the bin because it looked like it was junk mail, quite honestly. If it had not been for a
friend - we were due to go at the same time - I would never have attended. Thank God I did
and I was diagnosed but it took a hell of a long time. It took two months, I think, from the
actual screening to the diagnosis, which I thought was far too long. I was messed about a bit
in the clinic and I found the whole experience was horrible.
Joanne McCartney (Chair): Is that the follow-up or the screening itself?
D. Slade: The follow-up. It was not the screening. The screening was no problem; you just
go along and think there is nothing wrong, but the actual follow-up clinic, I think, was
dreadful. It was busy and they did not have time to talk to you and it just was really nasty.
Then I was sent on somewhere else and it just went on and on; as I say, it took two months
which I thought was far too long.
Elizabeth Howlett (Deputy Chair): You would have that worry all that time.
D. Slade: All that time, yes.
Verite Reilly Collins: Can I just say: I always talk to taxi drivers because they are
incredibly informative about London. I am lucky enough to have a taxi card to get a taxi
here today, and my taxi driver actually had had cancer. He said his experience was: he went
for screening and they said, “Oh you are absolutely fine”. He had a tumour apparently on his
throat. He had gone for the screening and everything and they said, “Absolutely fine, no
problems at all, but we want you to come and see somebody about your teeth in two days
time”. He nearly did not attend, and when he gets there, there are about 11 specialists
cluttered around and saying, “Right, well, we will start off with this treatment and then we
will be operating on this”, and they had not even told him that he actually had cancer.
Elizabeth Howlett (Deputy Chair): How long ago was that?
Verite Reilly Collins: That was four years ago, he said.
Elizabeth Howlett (Deputy Chair): So not too long ago.
Verite Reilly Collins: No.
Elizabeth Howlett (Deputy Chair): I hope it has all changed by now.
Verite Reilly Collins: Well, he seems very positive, very helpful. He was a very positive
person, but I do rather suspect an awful lot of people are not positive and they slip through
the net.
Anita Gray: What about you?
Verite Reilly Collins: In the back of my mind I thought I had cancer, and I was then faced
with a dilemma: do I ring up my NHS GP (General Practitioner) where I would be told, “Oh
you cannot see the doctor for two weeks”, and I would not have been able to sleep; or do I
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actually pay to go to my mother’s private doctor, which I did. The moment I spoke to the
secretary she said, “Oh come in this afternoon; I expect you would like to see the doctor and
will 3.30 pm be OK?” By 4 pm I was already on my way-- he could not find anything but he
said “ I know women always know what is wrong with their bodies”. He rang up and got
me an appointment with Charing Cross, and rang up and said, “Is there a cancellation?”
There was a cancellation the next day so I went in the next day.
Joanne McCartney (Chair): That was a screening?
Verite Reilly Collins: The screening, yes, and that is when they discovered it, but
apparently it was very, very, very first stages. That is the problem, I think. When women
say that they think they might have cancer I think doctors, at the very beginning, have got
to tell their receptionist, “Right, we see that person straight away”. We should not have to
wait, as you did, for so long.
Joanne McCartney (Chair): How did you two find it? Did you go to your GPs first of all?
Anita Gray: I took part in the regular three year screening which, in those days, in the last
century, was pretty awful because it was done in a mobile vehicle -D. Slade: Yes, mine was in a mobile -Anita Gray: -- which was extremely uncomfortable, impersonal, and it was touch and go
whether or not I would go back for the next one.
Joanne McCartney (Chair): Because it was so unpleasant.
Anita Gray: It was so unpleasant, yes. As it happened, I did not need to go back for the
next one because two years after that screening I found a lump. I was very stupid because I
was aware of a lump and it was hurting, so I decided it was hormonal and ignored it. I went
through the whole of the summer and then decided maybe it was something serious and
went to my GP to talk about a flu jab and said, “By the way…”, and she took one look and
she said, “This is not hormonal”, and immediately sent me to the Marsden (the Royal
Marsden Hospital), thank goodness. They were amazing. Unlike you [D. Slade], once I
was in the system it was very speedy and the subsequent mammograms I had - the yearly
mammograms - could not be more different. I realised that it is so important for the
woman’s first mammogram to be not too daunting and unpleasant because I think this is one
of the worries. I talk a lot to groups of women about breast awareness and I always impress
on the women over 50 and the younger women who have got mothers who had breast
cancer, “For goodness sake go for the screening”. My worry is that women who went when
I did would be so put off that they would not go back again. I like to think that it has
improved. I do not know - perhaps somebody can tell me - if they do still use mobile
screening.
D. Slade: I was screened at the mobile screening -Verite Reilly Collins: I was, yes.
D. Slade: -- but it was not unpleasant. I did not find it unpleasant.
Verite Reilly Collins: They have tidied it up a bit inside.
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Anita Gray: They have improved, yes, because I have not been in one of those cabins for a
long time. So maybe it has improved; thank goodness, yes.
Helena Green: Yes, I do have screening now, from age 50, so I found that absolutely fine,
but I have been used to having lots of mammograms with having had breast cancer some
time ago. The screening is fine, I find, and I would encourage any woman to go. My
experience was of making that first appointment with my GP - I suspected that something
was wrong, because I had some fluid coming out of the nipple; it was a little bit sore and I
figured something was wrong. Finally I got an appointment and once I had been for the
appointment I was referred straight away. Luckily my GP was very good. I was referred to
Lewisham Hospital who saw me some while after the appointment with the GP. I then had a
biopsy, I think. I had a mammogram which did not show anything. They said sometimes it
does not show, actually, if there is denseness in your breast, so it did not show up anything
at all. I then had a biopsy. I then went back for what I thought was going to be a routine
appointment to see the specialist, and he was under the impression that he was just treating
me for eczema of the nipple and so it was a bit of a shock to him, I think, when he had to tell
me that it was Paget’s disease, which is a rare form of breast cancer. He recommended that I
have an immediate mastectomy, followed by chemotherapy and radiotherapy. He was telling
me that this was in the very early stages, so my husband at the time thought, “Gosh, well if
this is very early, how come they are telling you that you have got to have a mastectomy
straight away with all this other treatment”. So we went back to the GP the very same day
and she was really, really good and referred me on to Guy’s (Guy’s Hospital) who then
confirmed the first opinion. I wanted to accept it, I must admit, but my husband spurred me
on and we then sought a third opinion and went to the Marsden, who then said that they
would do what is called ‘frozen shoulder’ - I think that was what it was called - and so they
said they would just remove the nipple, look behind it to see if anything had spread, and then
if it had, they would then do a mastectomy. They did do that and nothing had spread and so
all I had was just the removal of the nipple followed by no other follow-up treatment
whatsoever and that was in 1992. That is my experience.
Joanne McCartney (Chair): You have gone for screenings ever since?
Helena Green: Well, yes I have had lots of mammograms because of course you have
follow-ups every whatever; it starts off about four weeks, monthly; I think then six weekly or
whatever.
Anita Gray: Then yearly
Helena Green: Then yearly and now I have been signed off. Now, of course, I have had
mammograms, screening, because I have become 50 so I have had a couple of those since
then, which is fine. My experience of the screening is absolutely fine.
Joanne McCartney (Chair): Can I ask the two that found it unpleasant, the screening?
Why was it?
D. Slade: I did not actually find the screening unpleasant; it was the recall clinic that I
found unpleasant. It is like a clinic where all the people who have been recalled go. It just
was horrible there. Apart from anything else, the equipment was not working. I needed a
biopsy, so I had to go back again in a fortnight and, as you can imagine, by then I was just
distraught. I think the attitudes of the doctors did not help. Because they are so rushed,
they do not have time and they do not take into account the emotional side of it all. You are
sitting there bawling your eyes out and being an hysterical woman and they cannot really be
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bothered with all that; they just want to move you on to the next bit of the screening recall
clinic. It has a little pattern that it follows. The whole thing was just horrible. Then I had
to go back again, then again. It just was horrible.
Joanne McCartney (Chair): Did you have questions you wanted to ask but you did not feel
you could do or -D. Slade: I do not know. I think I was in such a state at the time and nobody had the time
to sit and go over it and over it and over it with me, which is what I needed. I had just not
been expecting it all. You get recalled and you think oh you go along and they will say, “Oh
everything is fine, off you go”, which most of the people who have been recalled did; you saw
them all disappearing out the door and waving and smiling and you are the one that is stuck
there who is not.
Helena Green: That might be similar to my experience where I thought I was going back
to just be prescribed some cream, and he did not have the results there so he had to make a
phone call and I could hear him say -- he thought the name had got mixed up and then the
results were brought in, so it was total shock to him. It was not so much of a shock to me
because I kept thinking, “I cannot believe this is only eczema of the nipple”. Although it was
sort of a shock, it was not quite, if you see what I mean.
D. Slade: I think I felt a bit like the celebrity there, do you know what I mean. They must
have known before I went that there was a high possibility I had breast cancer. I understand
now that the mammograms are graded and I must have been a high-grade mammogram.
You felt almost as though they all could not wait to get their hands on you. That is the
impression that I got because you are the sort of celebrity one there, that they think there is
something wrong and they are all obviously doing their job and thank God they did, but it
did not take into any account the state I was in, really, by then.
Elizabeth Howlett (Deputy Chair): Can I ask how long this took from the time the first
screen to -D. Slade: Well, that was another story. Yes, I had my screening appointment and then
there was a postal strike and they sent my recall letter out during the postal strike and it
actually arrived on the day of the appointment. Of course, by the time I got home from work
and got the letter, I had missed it. So, that prolonged it even further because then I had to
ring up and make another appointment, which was another fortnight because the following
clinic was full. So, that made it almost a month from the date of the screening. Then the
equipment was not working so I had to go back in another fortnight. The biopsy I had to
have done - a particular sort of biopsy – was at another hospital, which was another
fortnight’s wait, and then it was Christmas. If I had have stayed with the hospital that did
the original screening, it would have been even later because they did not have a clinic till
the week after Christmas. So it just went on and on and on.
Joanne McCartney (Chair): How long ago was this?
D. Slade: This was four years ago this Christmas Eve. I actually got my diagnosis on
Christmas Eve.
Elizabeth Howlett (Deputy Chair): Not too long ago. So how long did it take, the whole
thing?
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D. Slade: My original mammogram was about 20 something of October. Then I got my
diagnosis on 24 December. So it took two months.
Elizabeth Howlett (Deputy Chair): That is two months, that is what I was trying to work
out.
D. Slade: I had no symptoms. It was just the routine screening.
Elizabeth Howlett (Deputy Chair): Yes, it was the shock of course.
D. Slade: So I had two months of waiting and then I had the surgery. The surgery actually
happened very quickly after I was seen.
Elizabeth Howlett (Deputy Chair): So after the Christmas, the surgery.
D. Slade: Yes it was, I think, about 4 January I had the surgery.
Elizabeth Howlett (Deputy Chair): Where did all this happen?
D. Slade: Well, I started off at Queen Mary’s (Queen Mary’s Hospital). The screening was
in the mobile unit; I think it comes out of Queen Mary’s but it was actually at the
Memorial Hospital. Then I was sent on to King’s (King’s College Hospital) for the biopsy.
Because the consultant who actually gave me my results was actually at Guy’s and because I
did not want any more delaying - I had just enough of it - I said to him would he see me, and
he actually did the surgery for me. That was why I ended up at Guy’s, simply because he
was the one who was there and gave me my results. That was how long it took altogether.
Elizabeth Howlett (Deputy Chair): How did you recover?
D. Slade: It took a long time but I think - I do not know whether the other ladies would
agree - the emotional side of it is worse in some ways than the actual surgery and the
treatment. There are counsellors, but you have to ask for everything. I do not think things
are offered - any part of it - automatically. I do not think enough account is given to the
emotional impact that it has on you.
Joanne McCartney (Chair): Did you find you were given enough information?
Jolly Weathers: No.
Joanne McCartney (Chair): You did not?
Helena Green: Not at the time when I was diagnosed, but I thought that things seem so
much better now. There seems to be a lot more information around. I have actually helped
and supported other people that have been diagnosed with breast cancer, and I seem to have
an awful lot that I can help them with, from Breast Cancer Care and the other cancer
charities. So I am a bit shocked at your experience.
Verite Reilly Collins: Can I break in a moment? You help people but what I find is the
information - yes, it is written by doctors, it tells you what the effects are, what the
treatment is and everything - actually does not tell you anywhere what you can do to
mitigate these things. What really worries me is the Worthing Hospital Trust survey and
the Irish NHS survey - recent ones - which said that over 50% of us come off these life
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prolonging hormonal drugs because we cannot stand the side effects. Apparently, the Irish
say 26% of that 50% have already presented with recurring cancers. That is what worries
me - there is not the information about what you can do to help yourself overcome the side
effects.
Anita Gray: Well, there is, but unfortunately the problem is to get that information to
women. I do not want to plug Breast Cancer Care but it was because of their publications
that I got involved with Breast Cancer Care. The information has improved enormously,
but I also access Cancerbackup who are also very -- . But of course I think it depends on
your approach because, as you say, it is an emotional shock - a lot of women are stunned at
the diagnosis, they think it is a life threatening diagnosis, and we all react differently.
I - probably because of my work - I wanted to find out more, so of course I then immediately
got into action and picked up the phone and got all the stuff sent to me, but I was also very,
very lucky and I realise now how important it is to have counselling and really wonderful
breast care nurses because I was blessed at the Marsden with both, and they made all the
difference, they really did.
Verite Reilly Collins: My breast care nurse just peeled off skin and said, “Oh you have got
a problem but I do not know what to do”. That was because I had peeling skin from the side
effects.
Anita Gray: I realise, speaking to other women, how important it is to have that. Yes, yes.
D. Slade: That is it, people do not have that, do they?
Anita Gray: Yes, yes.
D. Slade: Not everybody has that. Not everybody has access to counselling either.
Joanne McCartney (Chair): What information would you have liked to have got? Once
you have had your screening or once you have found a lump and you know you are on that
path, what information -Verite Reilly Collins: If you have got this side effect like you have lost sight in your eye,
“Do not worry because in two months time the sight will come back again”. If you have got
peeling ghastly cracked skin on your feet, “Do not worry, there is an NHS product called
Flexidol which will deal with it”. I had to find all of these things out myself.
Joanne McCartney (Chair): So when you are prescribed medication, to have some
information about side effects of what -Verite Reilly Collins: Yes I would like to. I went in to see my incredibly eminent
oncologist specialist known as ‘Doctor 30 Second’ by the nurses, because that is all the time
you had with him. You ask any oncology nurse, “Do you know Doctor 30 Second?”; yes she
does if she is in London. I said to him, “Look, I am sorry but you have put me on Tamoxifen
last week, yes, and I have lost the sight of my right eye; I cannot see anything, I am totally
blind in that eye. Do you think it is Tamoxifen?”, “No, never heard of it”. Luckily, privately
I knew the chaplain at the Royal Marsden and I ring up David and say, “David, I have got a
little bit of a problem, perhaps you can help me”. “Oh”, he said, “I was on the Tamoxifen
ethical committee that approved it”, and he read me out the statistic and said, “2% of people
will actually have that, but it will improve in two months”. Now, why didn’t the doctors tell
me that?
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Joanne McCartney (Chair): Is that what we need about medication. What about the
process about where you could go for help?
Elizabeth Howlett (Deputy Chair): I think the problem is the information. What really
annoyed me intensely was the way that the NHS depends on the charities like
Breast Cancer Care to give out the information, and it should not be them having to use
their resources and having to ask for funding and everything. Their funding should be used
for nice things that we want. It should not be used to give out literature and information
which the NHS should be giving out.
Joanne McCartney (Chair): One of our recommendations, for example, could be that the
NHS puts together an information pack for -D. Slade: Well, I think they do but most of the stuff that I have was from
Breast Cancer Care. Once diagnosed and you are on the path, I think the breast care nurses
are brilliant. I think they all did a brilliant job. I do not know really, I think it was just all
the build up I found so traumatic.
Anita Gray: I have managed to access some information on-line from NHS Direct, but of
course that is -Verite Reilly Collins: It depends on which nurse you get.
Anita Gray: Yes, yes.
Verite Reilly Collins: Some of them are brilliant on NHS Direct, and some of them, you are
telling them.
Elizabeth Howlett (Deputy Chair): Yes, they go and tell you to go to
Breast Cancer Care -Anita Gray: Yes, exactly.
Elizabeth Howlett (Deputy Chair): -- or go to A&E (Accident and Emergency).
Jolly [Weathers], what happened to you, then?
Jolly Weathers: You are talking about screening. For me it was a bad experience because
when I went to the screening everything was ok. Six months after the screening there was a
lump and I had that lump removed. Then, years after, a lump came up in my left breast and
I went for screening. “My workplace are paying for it”, so I went. I did not say anything to
the doctor who did what he had to do. He said “Nothing is wrong”. I said, “Yes, something
is wrong”. I said, “Feel this”. So he gave me a biopsy straight away and in two weeks time it
was what I guessed.
Verite Reilly Collins: If you had listened to him…...
Jolly Weathers: Exactly. That is why with breast cancer you must be aware of your body.
D. Slade: The screening did not show it?
Jolly Weathers: No, neither did show.
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Elizabeth Howlett (Deputy Chair): So when you say your doctor did a biopsy, was that
the GP or did you go somewhere else?
Jolly Weathers: No it was a private doctor who did the -Elizabeth Howlett (Deputy Chair): Private doctor, of course, because you went -- that is
right, I see. So he was a surgeon, was he? I am trying to work out who does the biopsy
here.
Jolly Weathers: I think he was a doctor -Elizabeth Howlett (Deputy Chair): He must have been.
Jolly Weathers: Well, he said he was a doctor, because it was his private clinic and he was
on his way out and I said, “Please do it”, because at the time I was not driving so I could not
get back to his surgery, and he said, “Alright I will do it”, he gave me a rough time but he
did it. I am glad he did it because maybe I would have gone on walking around and thinking
everything was hunky-dory.
Elizabeth Howlett (Deputy Chair): So you had the lump removed.
Jolly Weathers: At the clinic I had a biopsy by the doctor when I went for the screening. I
had the lump removed at Guy’s and that was borderline, so I had to have another operation
and then another operation, during the third operation the breast was removed and
reconstructed.
Elizabeth Howlett (Deputy Chair): Right, that is what I was trying to get at, so it was
radical surgery.
Anita Gray: So did you not have a mammogram at all before all this?
Jolly Weathers: Yes, I did.
Anita Gray: You did have a mammogram.
Jolly Weathers: Yes, had the experience in the hut.
Helena Green: So the mammogram did not show anything?
Jolly Weathers: Oh the mammogram, sorry. I went to the hospital - this was the left
breast. I think the nurse had tried about four times with the mammogram, and he was
getting fed up because too much radium was going in my body and in the end he found it,
then I had that removed. On both breasts the screening did not show the lumps, but I know
the lumps were there.
Joanne McCartney (Chair): So information is a big issue, about getting the right
information. As Breast Cancer Care, do you send out your stuff to every clinic and are some
better than others?
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): Yes, we send it out
widely. We have very good contact with breast care nurses within clinics, and send it out
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widely so it is available in lots of different breast cancer units and stocked by breast care
nurses. But we do hear sometimes about women who do not have access to our information.
All the information that we provide is free and we produce it free, but I guess we do continue
to hear back from people that do not receive information when they need it and do not
receive it in the timely way. Sometimes what is not signposted is what information or
support services are available, and that quite surprises us because we know the information
is there, so it is frustrating when we do hear stories about women not having access to it.
We produce it free and hospitals only have to spend postage and packing. We sometimes get
feedback from people who have been in the clinic and have seen one of our leaflets there and
it has the sticker saying do not remove.
Elizabeth Howlett (Deputy Chair): Do not remove, yes.
Anna Wood (Policy and Campaigns Manager, Breast Cancer Care): Yes, do not remove,
only copy. We get quite surprised by that because we know they are free .
Joanne McCartney (Chair): You are all very articulate. There must be an awful lot of
women that go who do not have support, are not able to articulate themselves. What
happens to them in particular if they cannot?
Verite Reilly Collins: One dreads to think, because the doctors are not proactive and very
often it depends on the hospital that you are in as to whether you have a good oncology
nurse who is proactive and comes along and helps you, or whether you have one like I did. I
did not even know she existed until about a month after I had had the operation and I rang
up the hospital and said, “Look, surely there is somebody that can give me some
information”. “Oh haven’t you seen the oncology nurse?” No I had not. I think I saw her
three times in the whole of my treatment, and then it was under sufferance. Eventually I
gave her up as a waste of space because, as I say, she peeled my skin off and said, “Oh you
have got a problem”, and did not do anything about it.
Jolly Weathers: I had a good oncology nurse at Guys. If I felt down I would ring her up
and we just talked, I needed a second opinion. I was scared that if I asked for one I would
not get my operation done at Guys, and I spoke to her and she said, “Yes, it is your right”,
and she sorted out everything for me and I had it done at the Marsden. The operation went
OK; well, not really, I had two consultants. The first one I did not like. It was me standing
there naked and he was there talking to the other doctors saying “Well, I am going to cut
her there, I am going to do this there etc..”. He did not explain it to me. The second
consultant was a doll, he explained the whole operation and answered my questions.
Anita Gray: Where was this?
Jolly Weathers: This was again at St Thomas’s.
Anita Gray: Oh I see.
Verite Reilly Collins: Yes, going back to the screening, I thought it was very naughty
when I went to have my biopsy. In the first time in my life I actually said, “No, I want a
woman doctor”. I was in that sort of state. Nobody had said to me, “You may have a male
doctor doing this”.
Anita Gray: Nobody warned you, yes.
11
Verite Reilly Collins: It is a stupid thing. Now, my oncologist is male, my surgeon is male;
it does not worry me at all provided I know, but I had not been told this and actually he was
a very young doctor and you could see he was shivering and shaking. I thought, “No, no,
this is no good”. So I threw a wobbly and I said, “I am not going to be treated by a man”,
and it really worked in my favour because I actually got the head of the department and she
came along and did it with no problems at all, but it really shook me in this day and age, that
they had not said to me, “You may be treated by a male doctor”.
Helena Green: I do not think anybody told me that I would be seeing a man each time I
saw anybody; it was just a doctor. I must admit I did take it for granted. It did not actually
bother me.
Verite Reilly Collins: No, it would not normally bother me but I do not know, something
happened that time and I was in such a sort of state of worry. I do not know why. I
suddenly threw a wobbly. As I say, normally it does not worry me at all, but that time -and I think I probably threw a wobbly because he did not seem to know what he was doing.
Jolly Weathers: I think with the National Health you have to ask for what you want.
D. Slade: Definitely.
Jolly Weathers: You may not get it but you have to ask.
Helena Green: I think so. I agree with you.
Jolly Weathers: You have to ask; they will not tell you.
Helena Green: Exactly, you have to insist.
Jolly Weathers: That is what I found out.
Joanne McCartney (Chair): Can I come back to the oncology nurse? It seems to me that
was very valuable for you having someone who was on the inside but you could speak to in
confidence.
Jolly Weathers: It was a Macmillan nurse who working in the hospital but not for the
hospital.
Joanne McCartney (Chair): Verite [Reilly Collins] did not find out about hers till quite
late.
Verite Reilly Collins: No.
Joanne McCartney (Chair): How about the rest of you?
Helena Green: I must admit I had never heard of a breast care nurse at all. I did not have
any access to one at all when I was diagnosed. It was only in later years and being involved
with Breast Cancer Care that I know anything about breast care nurses.
D. Slade: I think the breast care nurses are brilliant; the ones that I have had contact with
have all been brilliant. I even went to a support group at the local hospital, which I had
nothing to do with as far as my treatment was concerned but it was nearer, and the breast
12
care nurses from there were absolutely superb. I think it is just that they are so busy they do
not have the time, really, to spend with you as an individual. They do do a really good job; a
really hard job as well.
Anita Gray: Yes. I believe it is a problem because I am also involved with
Breakthrough Breast Cancer and they have been writing a lot about the shortage of breast
care nurses and I think this is a problem. I am lucky again at the Marsden although the
breast care nurses there are overworked, because naturally the percentage of breast cancer
patients there is pretty high and their workload is enormous.
The thing that worries me, one of the things you mentioned confirms what I suspect and
that is the take-up of screening because this is -- a few times in October I have done some
campaigning for Breast Cancer Care in Boots, with another woman, and we have been giving
out leaflets and quite often older women have walked straight past us - they do not want to
know - and occasionally I have literally run after then and said, “Oh it does no apply to us”.
I said, “It does”, and the ignorance, still, among older women is quite alarming. It is lack of
realisation that the older age group statistically are much more at risk than the younger
ones. It is a big problem and I have the similar problem in my immediate family - also with
ethnic minorities. My son-in-law is Afro-Caribbean and with quite a few women in his
family - the grandmother and the great grandmother - I am having to try to get the
message across that I am an example. It does matter and if you go for regular screening and
it detects it early, it need not be a life threatening experience, but if you go on ignoring the
request for mammograms. As we know, of course, it does not pick up - as I know from my
case - all the cancers but it is better than nothing.
Joanne McCartney (Chair): What could be done to improve it? You have already talked
about getting your letter which did not look like an invitation.
D. Slade: Yes, exactly. Well that was one of the things I was going to say; the letter really
did not look like a personal letter and I think -Anita Gray: The invitation, yes.
D. Slade: Yes. The invitation, I think, should be a personal looking letter because I am
reasonably intelligent and I chuck all of the junk mail away and I realise that was not a very
intelligent thing to do, after that happened, but that could have delayed me longer and in my
case could have had disastrous results.
Anita Gray: Did it not have a hospital name on it?
D. Slade: It did not, it had nothing. On the back there was a return address and I looked at
it several times but it meant nothing, it could have been a bank or anything, it was just junk
mail. The envelope was a big white envelope.
Joanne McCartney (Chair): It was not addressed to you personally?
D. Slade: It did not look like a personal letter, put it like that.
Joanne McCartney (Chair): Right. So having that initial communication that is quite
personal -Verite Reilly Collins: And the name of the hospital on it.
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D. Slade: Another thing that I would say is that three years later to the day, I got another
letter.
Joanne McCartney (Chair): Still the same?
Anita Gray: What was that like?
D. Slade: Well, inviting me for my breast screening.
Anita Gray: What did that letter look like?
D. Slade: That still was not a personal letter.
Anita Gray: Really?
D. Slade: I should not have had a letter; I had had breast cancer, and I found that extremely
distressing to be recalled again three years on.
Verite Reilly Collins: Actually, the same thing happened to me and I was told, unless I
actually opted out, I was going to get letters every three years until I was 70. Then it
worried me because you get cancer after 70, so why do they stop screening women at 70?
Anita Gray: You can demand it. I have demanded it.
Jolly Weathers: You have the choice.
Verite Reilly Collins: I know but how many women would demand it. I think most would
think, “Oh well, the doctor does not think I need it”, and so not do anything.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): Yes, we did the
recent survey at Breast Cancer Care asking that question. I cannot remember the exact
figures but there were a certain number of women over 70 that were aware they could
request, but I think only about 20% of that group actually said they ever had. The findings
we had from our survey also shows there is that lack of awareness sometimes that the risk of
cancer continues to increase with age.
Helena Green: Although it does say it on the screening letter. I cannot remember if it is in
very small print or what but it does actually say that if you feel the need to be screened after
70, then it is your right, or words to that effect.
Verite Reilly Collins: How many people wait for the letter and when it does not come, do
not bother to do anything about it. I do not think it should be cut off at 70. I think it should
go on until, you know …
Helena Green: No, what I meant was say you were screened at - I do not know - 69 or
whatever, then on the letter there is the bit that says -- because when I had my very first one
-- so I would have thought that you -- I know I have got that in the back of my mind so
when I get there I will definitely be having screening after 70 because I will go and ask for
it.
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Jolly Weathers: What you are saying, I think -- sorry -- what you are saying is true. Send
the letter, the person will go. Do not send the letter -Helena Green: Oh I see, right, OK.
Helena Green: Yes, it would be better if you did get a letter, yes, after 70, if that is going to
be the way to -Verite Reilly Collins: Also, if you say that you want a follow-up, how sure can you be that
somebody will note that down and actually do something about it?
Anita Gray: Well, you have to do it yourself.
Helena Green: You would have to do it at the time, wouldn’t you?
Anita Gray: You have to be proactive.
Verite Reilly Collins: Well, how many women are going to be that proactive?
Anita Gray: It is a weird system because I was told, at the Marsden - I am still a patient
there but not for the original cancer - I would not get any more routine annual screening,
which is what I was having, at the age of 70, but you can request it. Then what I have to do
is go through my GP and then my GP gave me the telephone number of the nearest breast
screening which was St George’s (St George’s Hospital). I then had to ring up a telephone
number, so it was not exactly -D. Slade: It is not made easy.
Anita Gray: Not exactly. It was OK for me but for a lot of women would think, “Oh -D. Slade: Cannot be bothered.
Anita Gray: So there should be a better -- they were pretty good; they gave me choices of
dates etc, but you have got to -Joanne McCartney (Chair): You have got to really try.
Anita Gray: Yes, yes.
Joanne McCartney (Chair): Can I ask, then, you talked about some of the work you do in
Boots trying to get the message across to people. How do you think the NHS should do
that? How often -- they do not like these blanket campaigns How would you target women,
do you think? What would be the best way to do it?
Jolly Weathers: Advert, television, those big ones.
Verite Reilly Collins: Or even radio.
Jolly Weathers: Something striking. A lot of people do not listen to radio. Maybe the
older ones do.
15
Verite Reilly Collins: I think, yes, because I think radio is cheaper and I am noticing,
actually - because I have it on in the background when I am working - an awful lot of these
sort of campaigns are actually on radio now.
Jolly Weathers: Because Macmillan is on at the moment but I am thinking maybe because
it is cancer month now.
Anita Gray: It is October, yes.
Joanne McCartney (Chair): It is and I think Radio 4 Women’s Hour has been doing a
campaign. What about the locations and the times that you can have had screening? Is it
off-putting?
Anita Gray: Well, for me it was off-putting, yes, because it meant going to some remote
little hut on this vast St Georges hospital site, which was nowhere near a bus stop. It is
hardly encouraging. It is not made easy.
Elizabeth Howlett (Deputy Chair): It has changed now, though, because they have got
Duchess of Kent Breast Screenintg Unit.
Anita Gray: Yes, but it still would have made sense to have had the screening near my local
hospital which is Queen Mary’s, Roehampton, which is full of clinics. I take my husband
there to lots of clinics and the logical thing would have been - it is just up the road from me to have gone there.
Elizabeth Howlett (Deputy Chair): They did not do screening at that time, then?
Anita Gray: There is no screening at Queen Mary’s, Roehampton.
Jolly Weathers: You said, “They have changed”. What are they doing? Are they doing it
in a hospital?
Joanne McCartney (Chair): I think at St George’s.
Elizabeth Howlett (Deputy Chair): St George’s is the main centre now. It has got a very
big screening there, but Queen Mary’s is for small surgery etc.
Anita Gray: Why can’t they do screening there?
Anna Wood (Policy and Campaigns Manager, Breast Cancer Care): I think I saw a
mobile unit outside Queen Mary’s (Queen Mary’s Hospital).
Joanne McCartney (Chair): Mobile unit.
Anita Gray: Oh yes, occasionally, yes there have been mobile units.
Elizabeth Howlett (Deputy Chair): That is right; it is the mobile unit that would come.
Verite Reilly Collins: The Royal Marsden has got rid of theirs, haven’t they?
Anita Gray: Of their what?
16
Verite Reilly Collins: Their screening, yes, I am sure they have. Yes, because it is now the
hut for a man that looks after the car parks.
Anita Gray: The breast screening is done for Royal Marsden patients. Mammograms are
done inside the hospital.
Verite Reilly Collins: Yes, but not mammograms for people just having their annual check,
or tri-annual check up.
Anita Gray: Yes, it is done inside the hospital.
Verite Reilly Collins: Then why on earth do I get something for Hammersmith when I
live just around the corner; it is crazy.
Helena Green: That is very strange because the experiences you are saying -- in my letter
this year that I had, for my second one, I had a choice of where I wanted to go. It was just a
case of me making a phone call and there was a choice on mine.
D. Slade: That is what I was going to say, perhaps we should have a choice.
Helena Green: I just made a phone call and I chose -Anita Gray: This was for the over 70s so it might have been different.
D. Slade: If you are working in London, it is difficult to get time off to attend your local
mobile unit, so maybe if you could give a preference perhaps at your GP surgery, so it is
linked up to the list that the GP sends on, so that you could be seen when you want to be
seen rather than where you -- it did not affect me because I work locally anyway, so it was
not -Verite Reilly Collins: It makes sense.
Joanne McCartney (Chair): What about the opening hours?
D. Slade: Well that is another thing, isn’t it.
Joanne McCartney (Chair): Was it all during the daytime?
Helena Green: Yes, well, I chose my time which I think was just morning.
Verite Reilly Collins: It is sort of 9 am to 5 pm, I think, isn’t it?
Helena Green: Yes, I think it was between office hours.
D. Slade: So you were not actually sent an appointment as such?
Helena Green: No I rang up and then they sent me an appointment.
D. Slade: Maybe that is a better way to do it.
Helena Green: For some women, if you have got young children or -- you may want to go
outside the 9 am to 5 pm, or perhaps when your partner is at home you might want to go.
17
Anita Gray: If you have got young children you would not get routine mammograms until
you are 50.
Helena Green: That is true -- perhaps, it depends.
Anita Gray: I have got a daughter who will be 50 next year, so she will have her -- it will
be interesting to see, actually. I shall ask her. I shall ask for her reactions to who she gets
the letter from and what the invitation is like.
I think it would be nice to have flexible hours but I think we do understand the constraints
of the budget, but it would be nice to be offered different locations. I have to trek half way
across London. It would be much nicer to be able to choose something locally.
Elizabeth Howlett (Deputy Chair): So, do you think there should be a routine screening
for people under 50?
Verite Reilly Collins: Yes, definitely.
Elizabeth Howlett (Deputy Chair): Absolutely, yes.
D. Slade: I do not think it is beneficial for very young, is it.
Anita Gray: There is a debate about the age limit for screening.
D. Slade: It is to do with the density of the breast tissue, as I understood it. It does not
show on younger women.
Anita Gray: Both my daughters, they have all sorts of things going on with their hormones
anyway, and I just wonder what their breasts would look like under a mammogram.
Anna Wood (Policy and Campaigns Manager, Breast Cancer Care): There has been the
government announcement recently to lower it to 47, and then there is a trial the NHS are
looking at, the age trial. There are concerns about how effective it is in younger denser
breasts. I think it is something that does need to be reviewed and looked at, particularly
with the new techniques available.
D. Slade: I do think in the older group it should be as long as you are alive, really, because
the statistics that I have read show that the older you are the higher the incidence.
Elizabeth Howlett (Deputy Chair): They will not call you for one, you can ask for one.
Verite Reilly Collins: Yes but it should be automatic.
D. Slade: I think it ought to be for everybody, really.
Elizabeth Howlett (Deputy Chair): Well, why is it being reduced to 47?
Anita Gray: What is so magic -Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): They have gone a
year either way, they screen every three years so they have gone one round down to 47 and
18
they have gone one round up to 73. Through work they have been doing round the cancer
reform strategy that is coming out, they have been taking advice and I think there were lots
of people who said that they can see it being a benefit. There are some experts that say at 47
that is really where you start to see a bit of a rise in incidence and they said 50 was a bit
strange and then I guess there have been changes happening to breasts around that time.
Then, that older debate continues about how far, so I think this has been their initial thing to
say, “We will put the age up three years and down three years on both sides” -- because
there are arguments both ways, they put an extra round on each time.
Anita Gray: Both my daughters have wondered why, as I have cancer and several members
of my family have cancer, and some of us are carrying the gene but some of us who have had
breast cancer and ovarian cancer were not carrying the gene, that maybe the daughters
ought to be screened earlier but they have not been.
Elizabeth Howlett (Deputy Chair): They should be tested.
Anita Gray: I should imagine the elder one could request it.
Elizabeth Howlett (Deputy Chair): It is really up to their GP. If their GP knows about
this historical trend.
Anita Gray: The GP has not recommended it.
Verite Reilly Collins: Actually, can I say the problem is with GPs, if you have got diabetes
or a heart problem, the GPs are paid extra to look after that.
Elizabeth Howlett (Deputy Chair): Yes that is right, yes.
Verite Reilly Collins: With cancer, no extra at all. At my local GP surgery I ring up and
say, “Right, who is the cancer doctor expert?”, “Oh we do not have one”. I actually go to see
my GP’s surgery and say, “Look I have got this problem”, “Oh I do not know anything about
it, you know more than I do”, and that really worries me.
Anita Gray: Isn’t that because once you are diagnosed with cancer, all your treatment is
taken over by the hospital? -Verite Reilly Collins: Yes but there are things that you do need. For instance, you read
these things about your hormonal drugs and it says, “Ask your GP about this”, and like, you
know, forget it, do stop wasting my time. I did ask my GP the other day and that is when I
get told, “Well, you know more about it than I do”. I do think also, when I go to see my
private GP, he is a very, very sensible chap, the really old fashioned type of GP that actually
looks at your complete body and he said to me, “I never ever disregard what my women
patients tell me. You know far more about your body than we doctors do”. So he said, “Any
woman, whatever her age, if she comes to me and says, ‘I think I might have cancer’,” he
says, “I will do everything I can to get her screened”.
I think an awful lot of young people like Kylie Minogue and that sort of thing, feel there is
something wrong with their body. If it had not have been Kylie Minogue - it would have
been somebody else - I bet you she would have had to wait a much much longer time before
she actually got any treatment, because her GP would more than likely have said, “Oh do
not worry, it is alright, it is just changes”, this that and the other. When I have had
radiotherapy, the number of young patients I have spoken to who have been crying, saying,
19
“I went to my GP. I said, ‘I know there is something wrong’, and he kept on saying, ‘No, no,
you are perfectly alright’ ”. So I think women must be listened to much more if they say
there is something that is not right with their body.
Anita Gray: I do not think among the NHS generally, among GPs generally -- there are
always a percentage, but I get the feeling that most GPs now realise that if a woman goes to
a GP especially with breast cancer -- and it is because I believe this that when I talk to
women about breast awareness, I impress on them that if they have any -- if they notice any
difference in their breast, if they feel anything -- to not hesitate to go to their GP because
nine times out of ten it is benign, but it is so important to go to see the GP, and most GPs
take it seriously.
Verite Reilly Collins: Well, I do not get that. I have been down to that wonderful
Cancer Resource Centre at Battersea in York Road, and I have talked to three younger
people there in the different times I have been there and each one said to me - and they have
only been diagnosed in the last couple of years - “I had a real battle to get my GP to do
anything”. So GPs should and the good ones do, but I think there is still an awful lot that do
not.
Anita Gray: There is obviously still -- yes, yes.
Joanne McCartney (Chair): Can I move on now to diagnosis and I should ask you again
for your experiences when you were diagnosed with having breast cancer. Were you treated
well? Did you get the information you wanted; I know we have heard a little bit about that.
What would make the process better, do you think?
Helena Green: Well, I do not feel I was treated well at the point of diagnosis. There was
no breast care nurse there. The doctor was in shock and I almost was.
Verite Reilly Collins: Very helpful!
Helena Green: I do believe that things have moved on now, but I think as a matter of
course there should be a breast care nurse there always at diagnosis, because otherwise
sometimes they just do not know what to say; a woman might be in tears, upset, you know,
whatever. There does need to be somebody there who knows what they are about, to give
further information, and there should be further information there as well so that you can
either take it away with you -- well, you would have to because sometimes it does not sink in
that you are even being told that you have been diagnosed with breast cancer. So, yes, I
think that -Verite Reilly Collins: I think my doctor needed the shock treatment because when I went
in he had a box of Kleenex right by him. It was absolutely obvious. So I sit down; I say,
“Right, when are you going to operate?” and the poor chap nearly fell off his seat. I left him
in a state of shock because it was obvious I was going to have to have an operation so let us
get on with it. As I say, he was all there with the Kleenex and everything and really needed
them himself.
Elizabeth Howlett (Deputy Chair): So do you think really that if a woman suspects that
there is something like this, it is best they go accompanied by somebody?
D. Slade: Definitely.
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Helena Green: Well, had I known, I would have been accompanied.
Elizabeth Howlett (Deputy Chair): Because sometimes you get so shocked you are not
taking things in -D. Slade: Exactly.
Elizabeth Howlett (Deputy Chair): -- and somebody else should do it for you.
Helena Green: I had been led to believe that it was just eczema of the nipple and they had
convinced me that that was -- even though even before that, I suspected and even said to my
husband, “What about if I have to have my breast cut off?” This was ages before I had even
seen the doctor anywhere. They convinced me that it was just eczema of the nipple and I
was feeling like I was being a bother to everybody. So it was a bit of a shock when I finally
got told. So, yes, you should have somebody.
Joanne McCartney (Chair): You were not impressed with what happened to you, I take it?
D. Slade: No, once I had been diagnosed I could not really fault the treatment I had. No, it
was excellent.
Joanne McCartney (Chair): Did you have the information you wanted when you -D. Slade: Yes, it was there but I am someone who will ask for it, but my worry is that a lot
of people I know, do not know to ask, really, they do not know where to ask. I was given the
leaflet when I phoned Breast Cancer Care who -- I know they are here represented. -Anita Gray: You are wonderful.
D. Slade: They were, there were, they were absolutely brilliant, but I was diagnosed on
Christmas Eve and they were shutting. So I spent Christmas Day, Boxing Day and most of
the rest of the week just pacing the floor, clutching this little leaflet that they had given me
at the hospital, which was nobody’s fault, it is just the way it was. I think the breast care
nurses that I had contact with were brilliant, but again, a lot of people I have spoken since
did not have such good experiences with the breast care nurses.
Joanne McCartney (Chair): Is the breast care nurse someone you can ring up? -D. Slade: Somebody that you can ring, yes.
Joanne McCartney (Chair): -- and ask questions that you did not want to bother a doctor
with -D. Slade: Yes, exactly. Or, in my case, I needed to go over and over and over and make
sure that I was making the right decisions about my treatment, but I needed to go over and
over it and ask them the same thing several times, and think about it, and they were really
good. They did help me.
Chris Quince (Policy and Campaigns Assistant, Breast Cancer Care): We did a recent
survey of patients’ experience of their breast care nurses. The two things that came back
from that most strongly were emotional support and ability to answer questions that the
oncologist could not answer.
21
D. Slade: That is it because, as you say, I believe that you need to take somebody. When
you go to get your results you need somebody there with you because it is just like you are
in a bubble, aren’t you. You do not know what is going on really and you need somebody
else so that you can say, “Did he say that? Is that what he told me?”
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): It is crucial, I
think -- as Anita [Gray] was saying, we have done the survey and we were involved in the
survey that Breakthrough did with the Royal College of Nursing. We have done one in the
past and there are lots of issues about breast care nurses having very high case loads and
also how they are valued within the NHS, and at times when there are deficits, sometimes
they are redeployed onto wards and some posts are frozen. I think it is crucial that their role
is really protected.
D. Slade: Definitely.
Verite Reilly Collins: What really annoys me; I have just had a big heart operation and the
support that I got from nursing staff, helpline staff and everything, afterwards, was
absolutely fantastic, and I kept on thinking, “Why didn’t I have this three years ago with
cancer?”, because the NHS gives a huge amount of money to supporting people with heart
problems, but next to nothing in comparison to cancer. Now I can ring up the
Royal Brompton (Royal Brompton Hospital) any time of day or night, and always if I have
got a niggling tiny little problem, there is always somebody there, and an expert who will
answer. They actually rang me up every week for about six weeks after I had had the
operation, “Are you alright? Are you doing this? Are you doing that?” It would have been
lovely to have somebody from the cancer people ringing me up and saying, “Are you feeling
alright? Have you got this problem?” So why can’t the Government give the same amount
of support funding to cancer as they do to heart problems.
Elizabeth Howlett (Deputy Chair): Is there a difference there because
the Royal Brompton was a special health authority and with a different method of treating
patients etc? Where did you have your cancer operation?
Verite Reilly Collins: Well, I had it privately but then I was transferred to
the Royal Marsden.
Elizabeth Howlett (Deputy Chair): Right, so that was the same. Royal Marsden was also
a special health authority.
Verite Reilly Collins: As you just say, it is -- they are so overworked there, you really feel
embarrassed about ringing them up about a problem; whereas at the Brompton, no problems
at all; any minor problem. There is a big team. You get a huge leaflet which says, ‘For this,
that, that and the other, this is the number to call’.
Elizabeth Howlett (Deputy Chair): Interesting.
Verite Reilly Collins: It really has shocked me. The district nurse came. I opened the
door yesterday and there was the district nurse standing on the doorstep saying, “I have
come round to see you because I have not been able to get hold of you on the telephone. Are
you alright? Is there anything you want?”
22
Anita Gray: Mind you, having a heart operation is rather more serious than having a
mastectomy, in a way.
Verite Reilly Collins: Oh I do not think so.
Anita Gray: I think so. I have had two tumours. I have had a mastectomy. I have had
chemotherapy. I have had radiotherapy.
Verite Reilly Collins: Well, I think that is terribly serious.
Anita Gray: I have had breast reconstruction. I still think I am luckier than people who
have had to have major heart surgery.
D. Slade: Well, the recovery is quicker. The physical recovery is quicker.
Anita Gray: Yes, there is a big difference, even having gone all that -Verite Reilly Collins: Well, I would much rather have the heart operation.
Anita Gray: Oh yes, it is no fun, and like you I was diagnosed just before Christmas and
even though the Marsden were pretty good, that is not the best time to go to a clinic just
before Christmas. I went with my daughter, fortunately, and I thought I only had -- I knew
I had one lump and then -- I think with the breast care nurses also, a lot of it is chemistry
and the breast care nurses and myself, we really hit it off and she was absolutely lovely and
she was gentle and so sweet and she explained everything she explained what the biopsy
entailed and that whole business of the jelly and the needle etc. So I was sort of relaxed.
Then when they said, “Oh we have found another one on the nipple”, and then she took me
to one side and she then explained to me the implications of that, that it would mean that if
they were both cancerous, that I may need to have a mastectomy, but wait for the biopsy,
wait for the results. So I did not get the results until after Christmas and like you, as you
can remember, went through -- had the whole family for Christmas and the cooking and so
on. “Mum are you alright?”, “Oh yes, yes I am fine” -D. Slade: Yes. You get the turkey out of the oven and thinking, “Why am I doing this?”
Anita Gray: “You are looking a bit …”, “Yes I am just thinking, a bit preoccupied”.
Eventually went back for the results and was told, “Yes they were. You have no choice, you
will have to have a mastectomy”, and there again the breast care nurse was wonderful. I had
the surgery and I had the lymph nodes removed and I had a simultaneous breast
reconstruction, and the same breast care nurse saw me all the way through. Then she was
there at the clinic, thank goodness, when I had the results which indicated that it had spread
and that I would -- it is strange; I was quite accepting. “OK I am going to lose my breast,
end of story”, and it was when I was told, “It has spread, you will need six months
chemotherapy” - boing! - and it suddenly hit me -D. Slade: You are in a different league then.
Anita Gray: -- and my daughter said she can still remember the look of shock in my face
and my eyes filled with tears and this lovely breast care nurse took my daughter and myself
to a quiet room and explained it all and it made such a difference. I just cannot imagine what
it must be like for a woman who is on her own and she is told this.
23
Jolly Weathers: I have been through that.
Anita Gray: That must be awful. I was so fortunate.
Jolly Weathers: When I was having the breast removed and the reconstruction at the same
time, my surgeon did not say how long it would take and I did not ask - I had forgotten to
ask - and it took over 12 hours. I went to the hospital by myself. My family and friends rang
the hospital and nobody knew where I was. The nurses were so rude; the nurses on the
ward. Everybody was worried. They thought maybe I had taken off or maybe I am dead
somewhere. I know I had to go so I went. I had nobody to go with me.
Elizabeth Howlett (Deputy Chair): Can I ask, did you actually ask for reconstruction
immediately after the surgery, or were you offered it?
Jolly Weathers: I was offered - I did not know about reconstruction. So when I was
offered it I jumped for it, that is the best thing they could have done for me because I do not
think I would be walking around -- I would feel half myself was missing something, so I was
glad for that.
Elizabeth Howlett (Deputy Chair): So that was successful. What about radiotherapy?
Did you have radiotherapy?
Jolly Weathers: I chose not to have it because, again, I was on my own and I did not know
what effect my body would go through and I do not know if it could kill any cancer cell in
my body because the doctor could not tell me what it would do and what it would not do. So
I made the choice of not having it.
Anita Gray: What, the doctor did not explain what radiotherapy was for?
Jolly Weathers: Oh yes, to kill white cells. Oh yes he went through all of that process and
I said to him, “Are you 90%, 100% certain that it will kill the cell”, and he said, “No I cannot
give you that answer”, and I thought -Elizabeth Howlett (Deputy Chair): So have you all had radiotherapy as well?
D. Slade: No.
Elizabeth Howlett (Deputy Chair): No, you have not?
Helena Green: No I did not. When I was diagnosed and I was told I had to have chemo
followed by radiotherapy, I was more frightened of the chemotherapy than having the
removal of the breast. I do not think I would have liked to have gone through either
chemotherapy or radiotherapy. I was just lucky that I eventually did not have to have it, but
had I gone along with the first diagnosis, yes, I would have obviously done what they
recommended.
Jolly Weathers: Well, as my consultant said -- he went through the whole process and I
said, “No I am not having it”, and I said, “No I am on my own. You cannot tell me what it
will do to my body so I am not having it”, and he said, “It is up to you, it is your right”, you
know, he did not push. He said, “Could you take some tablets”, and I said, “Alright I will
have the tablets”.
24
Joanne McCartney (Chair): Anita [Gray], have you had radiotherapy?
Anita Gray: Yes, well, my journey was a bit strange because normally the procedure is to
have the surgery followed by chemotherapy. But sometimes ---- I know I have a very dear
woman friend ---- . Apart from my daughters, this woman friend was wonderful; she would
often come with me to the clinics and so on. A year after, we celebrated; we went to a
restaurant and she then said, “I have just been diagnosed with breast cancer”, and she was a
patient at Guys and she was part of a trial where they used radiotherapy to reduce the size of
the tumour, which was so successful that she did in fact keep her breast and had a
lumpectomy, which was very successful.
In my case I had the simultaneous breast reconstruction which - I will not bore you with all
the details - went wrong, and then another attempt was made to put that right and that went
wrong, so I had been in and out having surgery for several months and it was then decided,
“This has got to stop. We really ought to get on with the chemotherapy”. So I had six
months chemotherapy and then it was decided to follow that with six weeks radiotherapy,
and then look again at what to do about my horrible messy breast which you can imagine
after two lots of surgery and radiotherapy, it did not look very pretty. I then did in fact have
the final breast reconstruction which I also will not go into. So I had the, yes, the whole
caboodle, but there again, the nurse and the counsellor at the hospital were absolutely
fantastic and helped me, guided me through, and I could ring her up at any time if I was
concerned or worried about anything. That did help.
Jolly Weathers: Did it make you ill?
Anita Gray: Sorry?
Jolly Weathers: Did it make you ill, the chemotherapy?
Anita Gray: The chemotherapy? I was lucky because I was self-employed and I had
decided that -- and it was interesting because you would bump into other women who had
similar diagnosis and were having a similar treatment, and one or two of them had given up
work - they had no choice - and they seemed to be coping much -- they seemed to have had
much more difficulty because I think they were at home, they became very introverted, they
centred a lot more on how they felt. So, what I did was - being self-employed and I work
with my husband and daughter - when I did not feel well - because with chemotherapy it is a
cycle, so you have periods where you feel pretty rotten and then you have periods where you
feel OK - I would just say, “I am not feeling too well today, I will not come in”, or I might be
at work and say, “I am feeling sick”, and I would just walk out with my bag of crystallised
ginger and go off for a walk and sit by the pond and look at the ducks. So that helped me.
Yes, some of the symptoms were very unpleasant. I had terrible sweats, hot flushes and all
that stuff. It is not something I would recommend but I survived, I am here. I would not
want to go through it again but I do not regret it; the same with the radiotherapy.
Joanne McCartney (Chair): Did you have any delay in treatment? Did you have to wait
longer than you thought for treatment?
Anita Gray: What, the surgery?
Joanne McCartney (Chair): The radiotherapy, the wait ought not to be longer than -- is it
four weeks?
25
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): It is recommended
to be four weeks.
Anita Gray: Well, no, because it was such a while since my diagnosis so I had already
waited quite a long time so they immediately -- it was all well coordinated so at a decent
interval after the chemotherapy -- I got straight on to the radiotherapy and they let me
choose the time; that made a difference too. So I asked for the last appointment each day so I
had the whole day and then I had had the last appointment and then went home to flop out.
So I was very lucky.
Verite Reilly Collins: Can I suggest something that you might like to actually ask
the -- there is a little hospital in Wimbledon called Parkside.
Anita Gray: Yes I know it well. I live round the corner from it, yes.
Verite Reilly Collins: Well, I went with a friend and if ever I get cancer again I want to be
treated there. They are so incredibly proactive.
Anita Gray: It costs a lot of money.
Verite Reilly Collins: I know, I know, but we will sell the house or something. What
really impressed me when I went with a friend -- I did not like the experience of
radiotherapy, I found it terribly cold, frightening and impersonal. What really worried me is
you are lying there naked and there is no door, so men could wander in, that sort of thing.
So anyway, I hated it. When I went to this place I was taken round, while my friend was
having her treatment, by the woman in charge who was frightfully proud of the fact that
they had consulted all patients before they actually put one brick on top of another, and the
whole thing radiated, sort of confidence, tender loving care, but what really impressed me
was every patient is given a hospital gown at the beginning of her radiotherapy treatment
which is hers to keep. Now, it is a very clever way of saving money because if you actually
get a gown and you put it on, it is only for a few seconds and then it goes in the bin and has
to be washed, so I do not know what that is, £2 or £3, but it costs the hospital to wash it
every time you have treatment, whereas if you have your own personal hospital gown it
costs maybe a fiver to buy a hospital gown and yet they do not have any laundry costs the
whole of the five weeks. I thought that was such a sensible thing. It saves money and it
actually gave the patient something about, “Oh well they care about me, I have got my own
gown”.
Anita Gray: Did you take the gown home?
Verite Reilly Collins: Yes. So you wash it yourself. It was such a simple thing but I
thought they have really actually thought of the patients. They had lots of other things as
well which was so much better than where I was treated.
Anita Gray: The Marsden staff have got a new radiotherapy suite. You talk about
consulting the patients; I am on their patient carer group at the Marsden and we have been
very, very involved in looking at the whole radiotherapy experience, because when I had my
radiotherapy, like you, it was a very unpleasant experience because there were no gowns,
you were asked to take your clothes off to the waist there and then - you put them on a chair.
There was no sense of -26
Verite Reilly Collins: Privacy.
Anita Gray: -- privacy. That has all changed now. The lesson has been learnt.
Verite Reilly Collins: About time.
Anita Gray: You now have privacy, you have a gown and there is much more respect for
your modesty and so on. This has taken a long time. I think this is why it is so important
that patients are consulted, and it is important that you have these kind of meetings because
it is the only way things will improve.
Elizabeth Howlett (Deputy Chair): Can I ask Cancer Care: there is a government target
for the treatment, for instance four weeks, from diagnosis to treatment. To me it seems a bit
long. What have you found?
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): Is that from
diagnosis to your first treatment?
Elizabeth Howlett (Deputy Chair): Yes.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): I do not know -- I
think -Elizabeth Howlett (Deputy Chair): Because eight weeks is quite a long -Anna Wood (Head of Policy and Campaigns Breast Cancer Care): No it is not as long as
that; it is four weeks.
Verite Reilly Collins: They actually manage to massage it because when I said to my poor
doctor that had told me about the diagnosis, “Oh when do I see the surgeon?”, he said to me,
“Oh you will see the doctor within…”, and it is not the doctor that operates on you. So you
are then out of the system, they can tick the box that you have been seen, and then you wait
until the surgeon can actually operate.
Elizabeth Howlett (Deputy Chair): So it is much longer.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): Yes, we particularly
find the issues are, because they have got the target of your month for your first treatment,
we do then find that delays come in later on in a patient’s treatment journey.
Elizabeth Howlett (Deputy Chair): It is an appointment rather than a treatment.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): -- It is the same with
radiotherapy because there are not actually the same targets further down the end. We do
sometimes hear from people who phone us up and there is a lot of this. We hear about issues
like when they count the time as starting and we had someone, I think she was waiting
around for her radiotherapy, and had a long delay that to her seemed two to three months
but she kept writing to the hospital, then they would come back and say, “Well, no, it is
because we do not count the wait until we have got this certain result”, or, “It is the point at
which you meet with this radiographer or this person”. That varies from hospital to
hospital, I think, but we do certainly get some feedback which seems there are some little
loopholes in the system.
27
Anita Gray: Isn’t it still a bit of a lottery?
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): Yes. It is definitely
a lottery.
Anita Gray: Because I am talking to women - I do peer support - and some of the stories I
hear are quite hair-raising, now.
Elizabeth Howlett (Deputy Chair): The length of time they have got to worry about it,
yes.
Anita Gray: There is a whole range of treatment. It varies enormously from county to
county.
Anna Wood (Policy and Campaigns Manager, Breast Cancer Care): Well, we hear more
about radiotherapy than we do from that first diagnosis to treatment, but I think there are
issues there and they are trying to change the system for that particularly. There has been a
system of urgent or non-urgent as well, where if you are urgent you are referred by your
doctor, you are seen within two weeks, whereas if you are non-urgent, the around the
country waits have been up to around 17 weeks at the worst.
Anita Gray: Which is far too long because there is no appreciation of the psychological
effects. If it is considered to be non-urgent, OK, the tumour might not be as aggressive as if
it is urgent, but it does not alter the fact that the poor woman is still worried sick.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): I know. The
Government are looking to change that now to be two weeks for everyone, but it is
monitoring that coming in, and also checking that when new targets come in they are not
having a knock-on effect further down the system so you are getting them in there. Then
meaning that there are other delays that come in the system later on. They are looking at
the waiting times but it is a big issue.
Verite Reilly Collins: My surgeon said to me, “Where do you want to be operated on?”,
and I said, “Well obviously The Royal Marsden because it is around the corner from me”.
“Oh no”, he said, “The waiting times are horrendous”. He said, “I will not put you through
that”.
Anita Gray: What year was that?
Verite Reilly Collins: That was 2004, and he is the head of his department at
The Royal Marsden.
Anita Gray: Three years ago?
Verite Reilly Collins: That absolutely shook me that there was this man, the head of his
department, and yet he was not advising me to go to his own hospital. Afterwards, I started
meeting people when I went to the Cancer Resource Centre in Battersea and so on, and I had
to be very careful because I did not want to upset people by saying, “Well, I have had my
radiotherapy straight away”. So I was trying to work backwards as to when I might have
had the operation, so that people were not jealous and thought, “Well why didn’t I have the
radiotherapy so quickly after the operation”.
28
Jolly Weathers: How quick after the operation should one have radiotherapy?
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): The
recommendation is four weeks from when you are told, is what is said, but we take that to
mean really it should be four weeks after surgery, but because the wording is slightly woolly
and it is a piece of guidance, not a target, in the same way. It will be affected, obviously, if
you have chemotherapy in between, but there are issues then. I guess, iIn your case that
seemed to be OK, it was lined up after the chemotherapy.
Anita Gray: Yes.
Anna Wood (Head of Policy and Campaigns, Breast Cancer Care): -- If that is not
properly lined up, you are then waiting again. So some of those little changes in the system
to makea big difference.
Helena Green: I was just thinking about -- going back to the discussion about diagnosis,
because at the point of diagnosis I was told to come back in two weeks and have a
mastectomy. Well, every case is different but had I gone ahead and had the mastectomy, the
chemotherapy, the radiotherapy, it would have been done, I guess, very quickly. As it was, I
was diagnosed in the March and was given an operation in May. The point I am making is
that if you rush into these things -- if I had not decided to have a second and a third opinion,
it would have all been done, I would have needlessly gone through chemotherapy,
radiotherapy, and had a mastectomy for no reason apart from that it was the done thing
because I have been diagnosed with breast cancer. Every case is different and should be
looked at differently, in my experience anyway.
Joanne McCartney (Chair): Going back to the point that Verite [Reilly Collins] made
earlier about side effects and medication you would have for that, were you given enough
information about the side effects of chemotherapy or radiotherapy?
Helena Green: Not as much as I would have liked.
Joanne McCartney (Chair): You were not?
Helena Green: Not as much, no.
Joanne McCartney (Chair): [D. Slade], were you given -D. Slade: Yes, I was given adequate information, I think, and I got information as well.
Joanne McCartney (Chair): In what form did they give it to you? Was it leaflets?
D. Slade: They actually gave me a booklet. It was a Cancerbackup booklet, and also a sheet
on the particular type of chemotherapy I was having.
Helena Green: Was that after your operation?
D. Slade: The chemotherapy, yes.
Helena Green: No, did you get the information after the operation or before?
29
D. Slade: On the chemotherapy, after, when they took me down to the chemotherapy unit.
Helena Green: So perhaps I would have, if I had had it, yes.
D. Slade: They took me down and introduced me to my named nurse. It was very good.
She went through everything with me and gave me the information.
Helena Green: I did not have as much information before. Once we were making the
decision what to go ahead with, I was not given any information so that I could see whether
it would be beneficial to me or not, to just go ahead and have a mastectomy.
Joanne McCartney (Chair): That would have been useful to have had before.
Helena Green: Yes.
Verite Reilly Collins: I think the awful problem is also, nowadays a lot of people go on the
internet because they are not given the information, and a lot of information on the internet
is very suspect.
Anita Gray: It is not always reliable.
Verite Reilly Collins: So it worries me. A girlfriend of mine has not had radiotherapy or
chemotherapy or anything because she says, “Oh no, no, no, I have been on this website and
it says, ‘You can cure yourself by eating grapes’, or something”, and she is a very intelligent
woman, and I am thinking, “Jan, for heavens sake”.
Helena Green: Was that after her diagnosis of breast cancer?
Verite Reilly Collins: Yes she had the operation. She and I both had it about the same
time and I said, “Well, when do you start your this, that and the other?” “Oh no”, she said, “I
am not having it. I have been on this website. You must go on this website”, and she keeps
on emailing me things about things that are cancerous and just about every lipstick that we
use can give you cancer and all this sort of thing.
Anita Gray: Yes, and deodorants and all that, yes.
Helena Green: I was not until after I had the operation at the Marsden that they said,
“There is no need for any chemotherapy or radiotherapy”, and it has been 15 years and so I
guess they must have been right -Anita Gray: Well, she was told that she had to have it.
Helena Green: -- but I doubt if I had seen something about eating grapes, that I would
have taken any notice of that.
Jolly Weathers: There is a lot going around.
Verite Reilly Collins: There are an awful lot of those websites - what I call the ‘eating
grapes websites’ - and it is worrying.
Anita Gray: It would not be much point in giving a patient -- it is one thing to give a
patient sufficient information; it is also the problem of giving too much information. What
30
would be the point in giving you information about chemotherapy if the diagnosis does not
confirm that you need chemotherapy? Some women can be frightened.
D. Slade: Because I did not know I needed it until after the surgery so there would have
been no point giving it to me.
Anita Gray: Yes, it can be very alarming and frightening.
Helena Green: Yes, but the surgeon at Guys is just trying to persuade me that I should
have a mastectomy followed by the chemotherapy and the radiotherapy because, in his
opinion, that was all I could do.
D. Slade: They had not confirmed that if it spread to the lymph nodes then it would be
necessary to have chemotherapy.
Helena Green: Well, they had not even suggested they needed to do anything else apart
from have a mastectomy followed by -- there was no option for me -D. Slade: What would be the point of being given all that information about chemotherapy
until it reaches that point. -Verite Reilly Collins: That should come afterwards, yes.
Anita Gray: It should be when it has been confirmed.
Verite Reilly Collins: Do not frighten the patients before.
D. Slade: It is all part of the same theme isn’t it, that you get a little -Verite Reilly Collins: I think we should be given accurate information, helpful information,
when we actually need it.
Anita Gray: When you need it, yes.
Joanne McCartney (Chair): Perhaps signposted to other sites that are good sites and
effective rather than -Verite Reilly Collins: Rather than the grape.
Joanne McCartney (Chair): That can be very annoying at times.
Anita Gray: Because the Marsden has got their own publications, so in the breast diagnosis
and in all the waiting rooms there is a selection of booklets and there is the whole range:
chemotherapy, radiotherapy. There is a very good one on eating disorders while having
treatment which several patients -Verite Reilly Collins: Yes it is good that.
Anita Gray: I have been involved in contributing a little bit. The breast care nurses do
offer you this to make sure that you are well informed.
31
Verite Reilly Collins: I wonder if the rest of the country, how many other centres are
actually that good. It really worries me that outside London there is a huge number of
people living in the Orkneys and Shetlands or West Country or something, that do not get
half as much as we get, and that does worry me.
Anita Gray: That is what I meant by being a lottery, yes.
Joanne McCartney (Chair): I am afraid we have come to the end of our session. Is there
anything else you think we have missed that we should know about?
Anita Gray: What would be the result? Will you be able -- you will be making
recommendations to -Joanne McCartney (Chair): Yes we will. We will send you the transcript in the next few
weeks and ask you to read through it. That would form part of our evidence. We then have
a session on 28 November which you are all welcome to come to at 3 pm - perhaps we could
write as well to everybody in the meantime - where we are having representatives from NHS
Trusts and PCTs. That is for the medical. I think we are having someone from a cancer
charity as well to come and give us formalevidence on the question and answer session, and
we will then hopefully produce a report probably February/March time.
Verite Reilly Collins: We have got so many sensible things around the table that people
have said, that perhaps the London Assembly could actually do a sort of helpful booklet
about a step-by-step what you can get and what you cannot get.
Joanne McCartney (Chair): I suspect one of our recommendations may well be that the
NHS should produce some sort of booklet -Verite Reilly Collins: That would be wonderful but isn’t that pie in the sky?
Joanne McCartney (Chair): Well, we asked that in the neonatal and it is being done.
Helena Green: The only other point I would make. It is only my experience that I have
found this has happened, but about getting second and third opinions just in case the first
one is not quite what should happen. As I have said, it could have been so different for me.
Verite Reilly Collins: Yes because actually if one wants a second or third opinion, where
does one get it from?
Helena Green: Well, that is it.
Elizabeth Howlett (Deputy Chair): You are entitled to a second opinion.
Verite Reilly Collins: I know.
Helena Green: I was just lucky that we had a very good GP.
Elizabeth Howlett (Deputy Chair): You are also entitled to choose and book where you
want to go.
Verite Reilly Collins: Forgive my hollow laughter.
Elizabeth Howlett (Deputy Chair): Your GP is supposed to do it for you.
32
Verite Reilly Collins: Forgive one’s laughter.
Helena Green: I think it depends on the GP, though, doesn’t it, because I had a very good
GP.
D. Slade: I think the trouble is at the time you just do not know what is available.
Helena Green: No you do not.
D. Slade: You are hit with this shock and you just go along with it all don’t you.
Helena Green: Well, you just accept it because I would have accepted it.
Verite Reilly Collins: I think we need much more of a counselling thing because probably I
do not think most of us would have actually really been able to choose which hospital to go
to. We accepted what the doctor said but it would be so much nicer to have somebody that
one could, like the heart one, ring up and say, “Look I have got this niggling problem; what
can I do about it?”, because you get a lot of niggles.
Jolly Weathers: Yes, I think what you are saying is right because I have a client I speak to
who was recommended that she should take the chemotherapy, radiotherapy, then go in the
room where they are to test you with different medicine - what do they call it?
D. Slade: For trial?
Verite Reilly Collins: Clinical trials.
Jolly Weathers: Trials, yes, and the poor woman she does not know if she is coming or
going.
Verite Reilly Collins: She needed somebody to hold her hand.
Jolly Weathers: Yes, to really sit down and talk to her and let her make her own decision.-Verite Reilly Collins: Because it is all very well saying, “Bring a friend with you”, but I
think they are abdicating their responsibilities actually. They should actually give you
enough time when they are actually giving you the diagnosis and talking to you, to actually
go through it two or three times so you understand it and not have to rely -Anita Gray: You are still, though, sometimes in a really confused state and so you -Verite Reilly Collins: Yes, I was because I am on my own---Anita Gray: -- no matter how many times it is explained to you, you still would miss a lot.
Verite Reilly Collins: I could not tell my mother I had cancer. I am on my own. I am
divorced. I had to do everything myself and I did not want to burden a friend with it and
they kept on saying to me, “Aren’t you bringing a friend?”; I said, “No, no, no, I will ask you
all the questions”, and you could see their faces fall. They did not want me to do that. They
wanted to push me and the friend out of the door after ten minutes, and then the friend and I
would try to work out what it had been said.
33
Joanne McCartney (Chair): Thank you for coming.
Verite Reilly Collins: Thank you for organising this. It is lovely to be able to let off steam.
34