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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON THURSDAY 24th MAY 2001
AT THE CONSUMERS’ ASSOCIATION
Present: Clara
Mackay – Chair (Consumers’ Association); Gerry Mahaffey (Princess
Royal Trust for Carers); Geraldine Amos (Home from Hospital); James Appleyard (BMA); Alistair Beattie (Age Concern London);
Rick Tucker (UKCC); Eva Jacobs (Hon. Treasurer, Patients Forum);
Saranjit Sahota (National Consumer Council); Gerda Loosemore-Reppen (RNID); Jonathan Ellis (Help the
Aged); Kristin McCarthy
(Doctor Patient Partnership); Rahana
Mohammed (LMCA); Karen Thomson (Diabetes UK); Aine Dolan (POPAN); Carol
Youngs (Contact a Family); Mike
Took (NSF); Penny Banks (King’s Fund); Eileen Neilson (Royal
Pharmaceutical Society); Rachel
Kenny (Action on Elder Abuse); Diana Scarrott (British Dental
Association); In attendance: Diana Basterfield (Patients Forum)
Apologies: Roger
Battye (NAPP); Brian McGinnis (MENCAP);
Hew Helps (Chiropractic Patients Association);
George Levvy (Motor Neurone Disease); Imelda Redmond (CNA); Nicky
Willmott (Age Concern England); Judy Walker (Help for Health Trust);
Sally Carr (CAIT); Les Hill (NAPP); Julia Cream (Alzheimer’s Society);
Debbie Smith (Anchor Trust); Elizabeth Manero (London Health Link);
Alison Soliman (Dementia Relief Trust); Irene Mackay (Coeliac Society);
Francine Bates (Contact a Family); Barbara Meredith (Age Concern
London); Susan Savage (UKCC)
1. Minutes
of meeting held on 15th March
The minutes were agreed
2. Matters arising
Item C under
Chair’s Report: the Clean Hospitals Initiative:
It was reported that there had since been a second, more
successful meeting.
There was a good presentation about the Clean Hospitals
Initiative and the work plan. Patients
Forum members were able to explain their role and function.
It was left that patients organisations would be keen to continue
the dialogue with the C.H.Initiative as a core group but would want to
see interviews and consultation being undertaken on a wider basis as
well.
Preparations for
the AGM on 13th September:
It was reported that the June meeting of the Steering Group would
focus entirely on this with the help of an expert in company law.
More information would be available at the July meeting.
Health and Social
Care Act: (a) On Chapter 10 and the public involvement
issues, Clara reported that she had spoken to Jo Lenaghan and it was
agreed that Jo would attend a meeting of the Forum, probably towards the
end of the summer, to look at Chapter 10 in particular and the plans to
either re-launch or review it.
(b) On the broader bill issues it was proposed to organise a
meeting with the head of the bill drafting team to go through what had
been taken out and what remained in.
There would also be a need to be involved in discussions around
the regulations.
NHS Plan Task
Forces: It was
reported that there was some confusion about the role and remit of these
various task forces, their membership etc. A list of the members of the
Task Forces was circulated – taken from the Department of Health
website. This list had also
been circulated via email to members.
The next step would be that Clara would write to the Department
of Health asking if agendas from meetings could be made available
together with information on the key issues so that member organisations
could have some sense on how the NHS Plan was rolling out .
People who were members of these Task Forces had also said that
they would find it helpful to be able to communicate down and across and
the Patients Forum could facilitate this.
3. Chair’s report
Advocacy/ PALS
Seminar held on 24th May: Clara
thanked all those who had attended this very interesting day.
After the election Clara would write a letter to the Secretary of
State to raise a number of key issues raised at the seminar.
Party fringe
meetings: The
Patients Forum had been working with a number of other organisations on
holding a fringe meeting at each of the party conferences in the autumn. At the last Steering group meeting it had been decided that
in relation to the resources available and funding it would not be
suitable for the Patients Forum to continue its involvement.
Energies would be better devoted to attending the NHS
Confederation annual conference and exhibition in Manchester.
NHS
Confederation conference: It was reported that the NHS Confederation
had offered a large stand at a very reasonable rate to the Patients
Forum, immediately adjacent to their own stand, and they would organise
a joint event on Thursday 5th July that would be advertised
in the conference programme with the Chair of the NHS Confederation
hosting the event. Patients Forum had decided to use this event to
officially launch the website and member organisations were asked if
they would also like to use the opportunity to launch any of their own
initiatives. Members
were also asked if they would like to display materials and a logo as
the theme of the stand would be to profile the membership.
The NHS Confederation said they would provide a number of free
tickets for people to attend the conference sessions and members were
asked to apply for these.
Consultation:
It was reported that a number of members had attended a day long seminar
organised by the Department of Health. The morning looked at proposals
for the new Midwifery and Nursing Council and the afternoon covered the
Health Professions Council. Quite
a number of patient representative organisations had attended. There had been some interesting
exchanges among members present about the process of being consulting on
new proposals. There was a feeling that people were being inundated with
consultation requests for many different kinds of policy proposals and,
as a result, were feeling under a lot of pressure relating to being able
to engage with, stay on top of and influence proposals.
Arising from this was a sense that even when considerable time
and effort was put into a consultation process it was often difficult to
see what impact the input had made.
The Patients Forum had
been looking at how the consultation process could be simplified -
by cutting through some of the paper work, enabling organisations
to get together quickly, bringing in people from the Department of
Health or other relevant organisation, running through key issues,
identifying key concerns, pulling it all together quickly and making a
collective response. It
was thought this would help in a number of ways.
Firstly, there was always more impact if there were direct
contact with people developing policy. Secondly organisations learn and
feed off each other and this really strengthened the points that were
then made. Thirdly, it
enabled resources to be used in a more effective way.
In the next couple of
months it was proposed to hold a very brief meeting on the professional
regulation proposals and bring in someone from the Department of Health
as well as someone to facilitate the discussion.
This could be the pilot for a new process.
The next step would be to bring together a sub committee of
Patients Forum members to guide the process a little bit, identify those
areas where it was felt a joint working and collective response approach
would work best and organise and oversee this.
Any members who would like to be involved in the development of
this consultation process should contact the Patients Forum office.
Patient
and Public Involvement in the NHS consultation leaflet
Clara reported that a
summary of the findings in the scoping report was being widely
circulated in the form of a consultation document.
The background to this was that when the Health and Social Care
Bill fell apart, the Department of Health and the advisory group working
on this felt that if everyone stopped their involvement and walked away
it would be very difficult to get the momentum going again.
It was concluded that although everything was very much up in the
air, and the Government’s plans were not yet known, some very good
work had been done, a number of issues had been identified and that it
would be very helpful to continue to consult members and others and move
it along. This
was being done on the assumption that once things settled everyone would
come back round to the conclusion that the national patients body is
something to be considered. This
approach had been discussed with ACHCEW and they were happy with it.
Appendix
Dr.
William Albert, Human Genetics Commission
Also
member of the International Committee of the British Council for
Disabled People and Chair of the Norfolk Coalition of Disabled People
Marshall Nuremberg, a Nobel Laureate, writing in 1967 said. “My
guess is that cells will be programmed with synthetic messages within 25
years. The point that deserves special emphasis is that man may be
able to programme his own cells long before he will be able to assess
adequately the long-term consequences of such alterations, long before
he will be able to formulate goals and long before he can resolve the
ethical and moral problems that will be raised.”
The headline task of the Human Genetics Commission is to try, working
with the public, to do just this; to
formulate goals, to assess the long-term consequences on human
genetics and to consider the ethical and moral problems raised, of
which there are many.
Some people argue that there are such things as scientific facts and
scientific observations that transcend social contexts and cannot really
be challenged or should not be challenged either as inappropriate
(because how can science be inappropriate?) or transitional. Some
people would have said, before the 1910s/1920s, physics, if asked for
examples. The counter argument is that scientific discovery
is always socially or culturally determined and cannot be understood
outside the assumptions from which it has arisen. In the majority
of cases it is transitional, temporary, until something else comes
along. Again we can turn to Newtonian physics for that.
Some people who take the first position ask why a body like the Human
Genetics Commission is needed because science happens and we should just
let scientists get on with it. Other people, taking the second
position, see the necessity for the Human Genetics Commission simply
because science cannot be seen as being outside the social context in
which it develops.
I think this question might be particularly relevant to patients groups
because it might be said that surely in the case of human genetics
which is leading to medical improvements we should embrace these
improvements - if they are clinically effective. For many patients
groups a key question must be why people are debating the social impact
of genetic advances (or what might be seen as hypothetical or moral
dilemmas) when people are dying, when people need relief from pain, when
people need cures and treatments. These are legitimate
questions.
I am not concerned here with the question of clinical efficacy. The
remit of our Commission does extend into this area but only in a very
general way. There are other bodies that look at the
technical/medical questions
The Human Genetics Commission was established in February 2000 as part
of a broader government regulatory framework for biotechnology. There
are a lot of official reasons for why this framework has been
established and there are also the over-arching historical reasons that
are encapsulated in Marshall Nuremberg’s 1967 quote. My feeling
is that the immediate cause came out of concern over GM foods. This
really gave the biotech industry and the government a fright. And so it
should because messing around with natural biological building blocks,
whether they are plants, animal or human, is something that should give
rise to justifiable concern.
Looking at human genetics there is an added dimension that is quite
important to mention. This is that genetics has a very sinister
history. It comes out of the WW2 eugenics movement, of which it
was a part. That movement¹s most infamous link was with the Nazi
final solution. I am not, at all making a direct connection
between modern genetics and the Nazi’s although some people do but
only to highlight that this is a science that is not coming with clean
hands.
James Watson (of Watson and Crick DNA fame) has been vociferous in his
defence of genetics and equally adamant that modern genetics owes
nothing to its historical roots. However, there is a book called
“Murderous Science” by Benno Müller-Hill that is about the link
between science and the Nazis. The book is very disturbing and has an
afterword written by James Watson in which he says that this is all very
interesting and we have to understand it, but that it doesn’t have
anything to do with modern genetics. Then there is an after
afterword by Benno Müller-Hill where he says that James Watson doesn¹t
know what he is talking about! Müller-Hill says: “It is the duty of
geneticists to predict the possible consequences of genetic research and
to act accordingly. I fear that the new eugenics will again
become “kakogenics” a link between government and scientists to
impose solutions - with massive misuse of genetic knowledge, indeed I
would be most happy if I am proven wrong by history.”
If that misuse does happen it will not be a repeat of the 1933-45
experience, it will be a more subtle process. It will be sold, probably,
as was the pre-war eugenics movement, as health improvement. The
eugenics movement started in Britain, although people here were never
forced to be sterilised as they were in the United States, Germany and
Sweden. To argue against health improvement is a fairly
difficult thing to do, like speaking against “mom and apple pie.”
An important part of the work of the Human Genetics
Commission is to try to ensure that such misuse does not happen.
What is our role officially? It is to ensure that there is an
effective strategic, advisory and regulatory structure that identifies
benefits and potential advances in human genetics. Then to address the
broad ethical, legal and social implications arising from genetic
advances. Finally, to manage the process of change and the
practical applications of genetic advances within the NHS. (The
Commission has not yet done any work on this last area.)
Our job is to advise Ministers about what the public
is thinking about these things, not just what we are thinking about
them.
The way the HGC works is characteristic of both the new systems, both
for plant and animal work in genetics, and for human genetics, namely
that everything we do is completely open to public view. All of
our meetings are fully open to the public, all the minutes of the
meetings are available on the website and these are all “attributable
minutes.” All the minutes of the sub groups are also available
on the website or people can write in if they do not have access to the
Internet. All the papers and documents that have been discussed
are also available on request. This is fairly innovative and an
important part of our function as we talk to the public.
We have also engaged in public consultative meetings. We had our
first in Newcastle at the end of 2000. About 400 people attended
in two shifts. In the afternoon schoolchildren came along and in
the evening school children and other people attended. A number of the
issues discussed have since been incorporated into recommendations. We
also engage in written consultation one is entitled “Whose hands on
your genes?” This is about the storage, protection and use of genetic
information. It is all about trying both to gauge public
reaction to what is going on, to inform the public about what is going
on and, from that mix, to come up with recommendations to Ministers
about what the public attitudes are towards to what is going on.
The most recent high profile example of this is the question of genetic
testing in insurance. There was a detailed review of the issues. There
was a public consultation on this and discussions with the Association
of British Insurers as well as with independent experts and other
groups. We spent quite a lot of time and effort on this and
we have now come out with the recommendation that there should be a
moratorium on the use of genetic testing by insurance companies. This
was very interesting because it was absolutely unanimous within the
Commission. The evidence was overwhelming that insurance companies
firstly, did not really know what they were doing with respect to the
use of genetic test information. When they did know what they were
doing, what they were doing was wrong. The House of Commons Select
Committee investigated this and came out with a similar decision.
There was a previous government body that recommended a
moratorium. This had been turned down by the government. We
are reliably informed that this will not be turned down by the
government.
In terms of what we are doing, there is a big programme now to extend
genetic services within the NHS and that was going on for a long time
before we were set up. We are taking a watching brief on
this rather than direct involvement.
Our first major project is to do with the storage, protection and use of
genetic information - including genetic DNA testing and insurance. This
also includes such issues as forensic genetic information held by the
police. The question of medical databases is another quite sensitive
issue given what has happened in Estonia and Iceland where they have
basically been commercialising and selling it. There are
also concerns about consent and the use of information as well as what
information from genetic tests, if any, should be available, for
example, to family members. If you have a genetic test it is about
you but also about your family. There is also the question of paternity
testing and about whether your personal genetic information should be
available to employers.
All these areas are very contentious and are very difficult to deal
with. We also commissioned a MORI poll about public attitudes to genetic
information. This is available on the Internet.
Another part of our work, which we have not yet begun, is the question
of looking at whether human gene sequences should be patented. This
is something that began in the United States in the 1970s and since the
biotech revolution has taken off has become a very contentious issue.
There is now a European Directive saying that they can be and this is
being challenged by the Dutch government at the moment. Patenting
is profit oriented and this has created a lot of problems. It is a major
social issue and a major issue for governments.
There are two areas that are very important that the HGC is not
looking at in its first three-year plan. This plan was formulated after
a public consultation when people were asked to prioritise the most
important issues the HGC should look at. One issue is to do
with gene therapy and this has important social and ethical
implications, e.g. whether or not germ line gene therapy should be used.
(Explanation: all gene therapy so far as been somatic
- working on the non reproductive gene, i.e. working on individuals
rather than on progeny. Now James Watson is saying why shouldn¹t
we change the germ line? If we can stop a gene that would be
passed on we should change that so that it is not passed on.
At the moment it is illegal in this country; it is not
illegal in the United States.) Another area, which
passed us by, is stem cells a lot of patient groups are very
concerned about this. This is connected to therapeutic cloning.
This should have been opened up to a lot more public debate before
it went through. There are patient groups that favour this
move, for example the Alzheimer’s Society who feel that embryonic stem
cells offer the possibility of effective cures and treatments. However,
recent events in the United States, when they tried to use stem cells
with Parkinson¹s patients proved to be an absolute disaster. This
should give people cause to reflect. I am not talking about the
ethical side here but the clinical advisability of doing this kind of
therapy.
Personally I have great reservations about stem cell therapy, having
witnessed what happened with gene therapy that is basically nothing.
There has been lots of hype for the last ten years about cures
being around the corner. I work with lots of people who, like myself,
have genetic impairment and I know that 10 years ago people were so
pleased that cures were right around the corner and, of course, nothing
happened. Nothing is likely to happen for 20/30 years. I
hear echoes of that with stem cell therapy, which I find disturbing.
There is also of course, the extremely contentious issue of the creation
of life for experimental purposes. Britain is the only country in
which this research is actually permitted. Research is allowed in the
United States but not government-funded research. The National
Institute of Health there carried out a very big survey recently and it
was recommended that they do not fund this research. However
organisations independent of government funding in the United States can
clone human beings, engage in germ line therapy, practice sex selection
of embryos etc.
The group that I am involved with in the HGC is the Genetic Testing Sub
Group. The first thing we looked at was pre-natal testing
testing women who are pregnant - for all kinds of conditions. The first
thing we looked at was a consultative document put together by the
committee that preceded us called the Advisory Committee on Genetic
Testing. It was rather unclear as a consultative document in
that it did not set out questions. After very careful
consideration it was felt that this document did not address adequately
the ethical and social issues around testing; it was basically a
technical document. The feeling was that the remit of our
Commission is not technical but rather about ethical and social issues.
We sent the document back to the Department of Health. What
we are hoping to do, when we have time, is to go back and do another
consultation and look at the ethical and social issues around pre-natal
testing.
Most recently we have been looking at another area with the Human
Fertilisation and Embryology Authority. This concerns responses to a
document on pre-implantation genetic diagnosis. This is where at
the eight cell stage of an embryo a cell is tested for a specific
condition, and non-effected embryos can then be implanted. There
was a consultation document about this and with the HFEA we are drawing
up guidelines about pre-implantation genetic diagnosis should be used.
The questions asked included:
… When is it appropriate to use this technique? We have decided that
it should only be used when there is a “substantial” risk of
“serious” impairment.
… What is “substantial” and what is “serious?”
… Who decides? Is it the clinician, the parents, a combination?
… Should you make a list of conditions? Interestingly enough people
said there should not be a list of conditions, one reason being that
this would stigmatise people.
… What information should people have about the implications of starting
on this course of action? It is a tremendously difficult process, as is
IVF, this is not an easy solution. If somebody has a blood screen for
Downs, people should be told where that could end, what the process is.
We think that people should have the fullest information possible to be
able to make informed choices.
… Is there a danger that this technique could be used to create designer
babies?
… How should the procedure be regulated?
… Should centres be licensed as they are at the moment?
… What conditions should be tested for? At the moment centres have to
apply for a licence for each specific condition.
… The argument has been made that if you have pre-implantation genetic
diagnosis the condition and the structure should be the same as for
ordinary pre-natal diagnosis.
… How does one then deal with carrier embryos? It is not considered
grounds for abortion if you are pregnant with a child who is a carrier
of a condition. Does this mean that if you test for cystic
fibrosis on an embryo and the embryo is a carrier, should that embryo be
implanted? The child would not be affected.
… Should people be able to choose to implant affected embryos? Examples
of where this might be requested include deaf couples who want a deaf
child because they live in a deaf culture and want the child to be like
them. Another example is achondroplasia (dwarfism). Two people with this
condition might want to have a child like them.
… How do we prevent this treatment being used for eugenic purposes for
getting rid of a whole group of people in the population?
… Should people be able to choose embryos for reasons other than serious
genetic conditions? For example, should they be able to use this
technique for sex selection of embryos? Should you be able
to select embryos for tissue typing? There is a case now in the United
States of a couple wanting to have a child whose tissue could be used to
save the life of their firstborn child who has FrancŠŠ.
Let me end by returning to the question of science and society. The
HGC cannot regulate science, it would not want to. But it can,
through public consultation gauge attitudes towards the application of
scientific discoveries. I would argue that this is vital if
society wants to set the parameters in which science is developed and
applied. Some may argue that this is wrong, that science
should be able to set its own agenda but, in fact, that agenda is being
set increasingly not by scientists but by the market. This is where its
funding is coming from. This means that the market is becoming an
arbiter of what science is appropriate. Do we really want to let the
market and the multinationals set the social agenda. In many ways this
is happening already. For example, by developing genetic tests for
certain conditions, you can then create a demand to take advantage of
the tests and there could be increasing social pressures to take the
tests and act on the results.
I feel there should always be a tension between science and society.
If handled badly that tension can be destructive, leading to
useful innovations being rejected. It can be destructive for
society in allowing society to become complicit in barbarism in one way
or another, which of course it has been. If, however, that
tension is handled well it can be productive, leading to science that
meets real social needs rather than trying to define those needs by
default. It is by making this tension more explicit, by
bringing it into genuine public ownership, that I think we can try to
move towards making more informed social choices about what we actually
want from this particular, very powerful, science and what we don¹t
want from it. This is really what I see as the most important task
for this Commission.
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