Examination of Witnesses (Questions 320
- 337)
WEDNESDAY 30 JUNE 2004
MS SHEENA
YOUNG, MS
SHARON GRIFFITHS
AND MS
TRACEY SAINSBURY
Q320 Dr Harris: My question is: if
this policy leads to a prolonged lack of donor sperm such that
some people cannot get treatment in this country on the NHS, would
you think it a price worth paying for the ending of donor anonymity?
Ms Griffiths: No, I probably do
not. I am hoping that, like other countries, it does change. The
mindset here is very different.
Q321 Dr Harris: There is evidence
from Sweden that there is no problem with supply not meeting demand
because those families who want anonymity go to Denmark and so
become—I do not like the term—fertility tourists.
Do you think that should be an option which is open to people
in this country? Do you see any problems with that, for example
that it is only really available to those who can go abroad and
pay?
Ms Sainsbury: Even if you have
donor insemination, there is no onus on the parents at the moment
to tell the child. I do not know whether I agree with that or
not. But you do not have to tell them; most people would still
go ahead with treatment and just never tell the child. That was
not an option for us.
Ms Young: We have heard from Mr
and Mrs Masterton that if a patient wants to have a treatment
which is not freely available in this country and it is something
they really believe in and want, they will go abroad and they
will seek that treatment abroad. I do not think we will get rid
of that. I think that will happen; there is absolutely no doubt
it will happen. It is down to personal choice and as long as they
have the information to make an informed choice, then that is
fine.
Q322 Dr Harris: Are any of you fed
up with some of the sexism which exists when people ask questions
about older women having treatment but we all rejoice when a seventy-year-old
man becomes a father, "What a guy"? Do you find that
irritating, as women and people who have been through infertility
treatment, or do you think nature has expressed a view with the
menopause and we should respect that?
Ms Griffiths: This is not quite
what you are asking, but the sexism is partly that there is an
assumption that infertility is the woman's problem.
Ms Sainsbury: Absolutely; very
much.
Ms Griffiths: I notice the Committee's
meeting leaflet says "Infertile women". I actually was
not. There is a great assumption that it is usually the woman.
Ms Young: In my case we had joint
fertility problems but it was always seen as the woman's thing.
I am a bit older and back when we first encountered infertility
I was invited along to see a gynaecologist and I was given the
results of my husband's sperm test and told we would never have
a family because he had a low sperm count. He was never invited
in to have the information given to him. That certainly does not
happen as often now, but it still does occur on certain occasions.
Q323 Dr Harris: Fifty-five-year-old
men are given treatment when they are in a couple, but 55 year-old
women find it much harder when they are infertile. Is that fair?
Ms Young: Yes, because 55 year-old
women would most likely not have the eggs to allow them to become
pregnant. A 55 year-old man could use his own gametes.
Q324 Dr Harris: A man without gametes
at 55 is allowed to access donor treatment, whereas a 55 year-old
woman finds it much more difficult in this country to access donated
gametes or embryos. Is that fair?
Ms Young: Probably not.
Ms Griffiths: I do not have a
problem with it personally.
Q325 Dr Harris: You think it is fair.
Ms Griffiths: I think it is right.
Ms Sainsbury: Going back to your
sexist question, when we were going through treatment we decided
that we definitely would not tell the child and it was only a
fertility counsellor who said "By not telling, whom does
that protect?". We spent an hour going round in circles and
came out with the fact that it was my husband's ego. That was
it. There was absolutely nobody else. It was nothing to do with
the welfare of the child and not telling them their biological
origins. It was purely protecting his ego, which was not worth
it.
Ms Young: It is more than just
protecting the male ego. We do very often come across couples
who will phone and express great sorrow and distress at the fact
that perhaps the husband's parents or the wife's parents have
said quite openly that they would not accept any child as being
their grandchild because donated gametes were used. It is all
about changing culture and making society aware that the people
who are seeking these treatments want to create a loving family
and taking away that stigma which surrounds infertility. We have
worked for many, many years to try to do that, but there is a
lot of work still to be done in that area.
Q326 Chairman: Let us see whether
we can get some views about HFEA from you? One of our remits is
to look at HFEA and how it is performing and what needs to happen.
Do you have views on that?
Ms Young: As a patient I have
a very strong view that the HFEA is there to protect patients.
I do think that we are the envy of the world for having the HFEA.
Q327 Chairman: So no changes.
Ms Young: I am not saying "No
changes". There may be things which may need to be looked
at. I do not know the ins and outs of all of what you are looking
at. I certainly think it is an asset to patients.
Ms Sainsbury: I do think they
have changed dramatically recently. The old HFEA patient's guide
was just a directory of clinics. It was just like a telephone
directory basically with minimal information. The new patient's
directory which has been put together, with case studies and relevant
information, is fantastic. They are going a long way. They have
implemented the new patient complaint letter, or you can now contact
them and put your complaints to them and they will work really
hard for patients. They are very aware. It moves so quickly; fertility
treatment is going so fast.
Ms Griffiths: I would agree with
that. If it heads in that direction, it seems much more patient
friendly.
Q328 Kate Hoey: Do you think they
should have actually met the Mastertons and talked to them?
Ms Sainsbury: Met them and talked
to them. I personally would not have gone for sex selection. I
would not have done. I sat and listened and it sounds really harsh
and dreadful, but I would not have done that. I think HFEA were
right.
Q329 Kate Hoey: But do you think
the HFEA might have felt differently if they had actually met
the couple?
Ms Sainsbury: You have to take
the facts. Every member of the lay committee of the HFEA should
have been given a copy of the report. It is disgusting that they
were not. As far as meeting the couple is concerned, the evidence
is what is before you and I do not think it would have changed
their decision.
Ms Young: It would be quite unrealistic
to set a precedent of the HFEA seeing every couple who applied
for every single thing which was to be looked at.
Q330 Kate Hoey: No, not every single
thing: where something is different and special.
Ms Young: Even every single special
thing. If you set that precedent now, technology is moving on
all the time and you are going to see this type of thing probably
more and more. It would be a dangerous precedent to set.
Q331 Chairman: Sharon, do you have
any views about the HFEA?
Ms Griffiths: I am just hoping
that they are heading in a direction which is more in touch with
the patients, emotionally as well.
Q332 Chairman: What about clinics.
What would you say about the clinics and the information you get
about them? Is it solid good stuff? Do you feel informed?
Ms Griffiths: Difficult to know
now as my experience was a long time ago. Yes, I think so. It
is just that perhaps they are still out of touch with the patient
and their emotions and what they are going through.
Ms Sainsbury: I have a London
support group for people going for infertility treatment and I
go in and out of lots of clinics. You get information through
the post but you need to walk into each clinic before you decide
where to go, because they all feel so different. You know where
you are comfortable.
Q333 Chairman: What do you think
about the amount of effort and research that goes into trying
to resolve infertility problems in some way? Do you think we do
enough of that in this country?
Ms Sainsbury: No.
Q334 Chairman: We can put a spaceship
on Mars, allegedly, but infertility is a problem. What do you
feel about that?
Ms Sainsbury: I think we are playing
catch-up quite a lot. We are very good and we are very thorough.
I was at National Infertility Day a couple of weeks ago and there
are so many things coming up. We do not share enough information,
it is not open enough. Everybody has access to the internet. Patients
particularly talk to each other. There are loads of bulletin boards
and chat rooms, everything for infertile patients. The clinicians
do not talk to each other half as much as the patients do; or
it does not seem that they do.
Q335 Chairman: That is how you get
the information about what is happening.
Ms Sainsbury: Absolutely.
Q336 Chairman: You do not get it
from HFEA for example.
Ms Sainsbury: No.
Q337 Chairman: Sheena, do you have
any views on that?
Ms Young: The internet is becoming
a big thing but in my view it can also be quite a dangerous thing.
I am not quite as internet-friendly as perhaps Tracey is. I do
think it is a resource, but it is important that everybody works
together to get the best for the infertile couple. INUK work very
forcefully with all the clinics and we work closely with HFEA
and lots of other people. That is what it is all about. It is
all about all the organisations which help couples working together
and sharing information and getting the best for those couples,
to provide them with all the information and support they need.
Chairman: Thank you very, very much indeed
for coming today and sharing your views with us. Again, like the
other witnesses, very helpful, good questions, good answers. Thank
you very much.
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