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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON 14TH NOVEMBER 2001
AT THE KING’S FUND Present:
Clara Mackay - Chair
(Consumers’ Association); Ranjini
Beveridge (Maternity Alliance); Will Anderson (King’s
Fund); Beverley Lawrence
Beech (AIMS); Patricia
Still (UKAN); Bridget
Turner (Diabetes UK); Jonathan
Ellis (Help the Aged); Julia Cream (Alzheimer’s Society); Alison
Soliman (Dementia Relief Trust); Mike
Took (National Schizophrenia Fellowship); Philip Harris (Centre for
Health Information Quality); Barbara
Meredith (Age Concern London); Gerda Loosemore-Reppen (RNID); Marianne
Rigge (College of Health); Imelda Redmond (Carers National Association);
Frances Blunden (POPAN); Sue Savage (UKCC); Ruth Taylor (Haemophilia
Society); Kristin McCarthy (Doctor Patient Partnership); Nikki Joule
(Neurological Alliance); Rahana Mohammed (LMCA); Eileen Neilson (RPSGB);
Ray Appleby (AHCHEW); Diana Basterfield (in attendance – Patients
Forum) 1. Apologies: Brian McGinnis (MENCAP); Arnold Simanowitz (Action for Victims of Medical Accidents); Francine Bates (Contact a Family); Maureen Atkinson (Chiropractic Patients’ Association); Mark Paulson (GMC); Sally Carr (CAIT); James Appleyard (BMA); Eva Jacobs (Hon.Treasurer, Patients Forum) 2.
Minutes of the previous meeting: agreed 3.
Speaker: John Halford from the Public Law Project
speaking on the Human Rights Act 1998 – Implications for patients’
rights and representative organisations See appendix for notes
of the talk.
3. Chair’s Report
(a)
Patients Forum 2001 Conference will be held on (b)
Patients Forum website.
The Steering Group is (a)
Current situation. Many
members will have attended the seminars organised by the DOH 5. Feed back on Task Forces Barbara Meredith said
that there were now a number of Patients Forum members on Task Forces;
Francine Bates, Judy Wilson and herself were on the Quality Task Force
whose responsibilities included PALS, Patients Forums etc and what she
wanted to feed back to members was the problems faced by people from
patients’ organisations who join these bodies.
This was because they were supposed to be both champions for what
the government was doing and challengers of it.
She said that after years of campaigning to be allowed to sit
round such tables in the end the table turned out to be one which, in
effect, was carrying out government policy.
In the discussion Marianne Rigge raised difficulties she had
experienced, e.g. papers about perfectly legitimate subjects having
“Policy Restricted” at the top of every page and members being told
that they could not discuss them with their colleagues.
Additionally, papers were often emailed the day before a meeting
and this again made it difficult to consult colleagues.
In addition, Barbara pointed out that the extremely short
timescale leading up to the drafting of the Bill had meant that there
had been no time for patients’ organisations to be able to input the
learnings about the NHS gathered over recent years although she hoped
that, in time, Task Forces would become more able to take this on board.
6.
Proposal to incorporate Patients Forum as a limited Company At the previous meeting
on September 14th it had been agreed in principle that the
Patients Forum should move ahead with the proposal to establish Patients
Forum as a limited company. Imelda
Redmond briefly outlined the background behind this move.
After discussion it was
agreed that the Steering Group should move ahead to incorporate the
Patients Forum as a limited company.
7.
Information Exchange
Beverly
Beech (AIMS).
They are being very exercised by the changes being proposed by
the UKCC. They have just produced a leaflet on how to complain about
maternity care. They are also extremely worried about the numbers of women
who are being intimidated into going into hospital and not being
provided with a midwife when they want to give birth at home.
None of the Trusts are acknowledging that they are not providing
a home birth service. Looking
at the national statistics, it is extremely clear that what they are
doing is widespread move to stop women having home births.
In most Trusts it is barely over 2% and yet in the Trusts that
are really responding to changing childbirth the home birth rate is
between 14 – 20%. They
are using the shortage of midwives as the excuse and are not looking at
the provision of maternity care within hospitals and how inappropriate
it is, and how midwives do not want to work in hospitals.
Women are being told that they go into labour, give us a ring and
we may not be able to send you a midwife so you’ll have to come in.
Only the stroppy ones get through to AIMS and manage to get what
they want. They have had some very difficult cases of women who want
breech births and there have been two women who have had twins at home
with midwives where the Trusts have refused to provide a midwife, have
been totally dishonest about the information they have given and the
women have, in the end, contacted independent midwives who out of the
goodness of their hearts have turned up and helped them to deliver the
babies yet will not be paid for it as the Trust will not pay and the
women do not have the money. Bridget
Turner (Diabetes UK).
Some of their hot topics include the “Missing Million “
campaign which took place in June.
There has been an extension to this to ensure that people with
diabetes receive high standards of care.
They have produced a list of rights and responsibilities to show
what services people with diabetes should be expecting to receive.
This is being sent to people with diabetes so that they can
participate in the lobbying for better services along with Diabetes UK.
Work is continuing with the National Service Framework.
They are currently working on issues such as education people
with diabetes and health care professionals.
Particular problems were identified in an Audit Commission report
“Testing Times” which showed (a) that hardly any people with
diabetes were receiving an adequate education programme to enable them
to live with the condition and (b) there was a lack of education of
health care professionals about diabetes.
There is currently a high profile case in the press involving the
Disability Rights Commission where a young boy has been stopped from
going on school trips because of his diabetes.
Diabetes UK is looking at how as an organisation it can pick up
discrimination issues because they do not currently fund legal cases. Jonathan
Ellis (Help the Aged). The
Dignity
on the Ward campaign is coming to an end in the New Year after a two
year programme and they are going to be wrapping up with a big national
conference to be held on 9th February. Julia
Cream (Alzheimer’s Society).
They are in the middle of a debate about what nursing care is,
for older people in particular and the Department is trying to find a
tool to calculate how much nursing care costs
and it is extremely worrying what is going on there.
This will, hopefully, feed in to the National Service Framework
which they anticipate will come out in late December.
They have recently heard that it has been watered down very
strongly. They
have also been working on their NICE decision which gets made in
December. Phil
Harris (Centre for Health Information Quality).
Phil said he was
relatively new in post and he was taking a lead on patient and consumer
issues. Much of his
work is funded by NICE and most of his time is devoted to the
development of patient versions of clinical guidelines. It was likely
that he would be contacting individual members of the Patients Forum in
relation to their work on producing patient versions of guidelines. Barbara
Meredith (Age Concern London).
They are waiting for the National Service Framework and are also
interested on developments on intermediate care in London.
They hope to work quite closely with the NHS Regional office on
that. They are
continuing to work (and hope to have a report in the spring) on
Transport for Health. They
would welcome any comments people might have on people’s non-emergency
journey’s to health care – either to their GP or to hospital, the
chemist, the optician etc. The
last guidance on patient transport was issued in 1991.
This issue does not feature any more in health improvement
programmes or anywhere else. They are trying to look at it from a very broad
perspective and it is extremely interesting work. Gerda
Loosemore-Reppen (RNID). Gerda
has just been appointed to be on a DOH task force to look at the part of
the NHS Plan which talks about community equipment services. These are supposed to be integrated between health and social
services. She has
very little information on the task force except for the names of the
organisations that have been invited.
It looks as if it is going to be a rolling programme of work
lasting several years and the RNID is obviously very interested in this
because they see a lot of opportunities for patients if they have an
integrated service rather than having to go from A to B and then falling
in the cracks between the different organisations.
If any members have an interest in equipment services of any kind
could they please send comments to Gerda. Frances
Blunden (POPAN). They
have spent quite a lot of time recently doing responses on professional
regulation which is a big concern for them.
They are particularly concerned that government has failed to
take seriously the fact the psychotherapists, therapists and counsellors
are not regulated. They
have been supporting the case of a woman who went to the GMC.
The doctor was struck off by the GMC but he is still operating as
a psychotherapist and no doubt behaving in exactly the same way as when
he was a doctor. They are also looking quite seriously at preparing a
policy document on regulation which would bring together a lot of their
ideas. In addition
they are beginning to prepare a response to the Home Office report
“Setting the Boundaries.” This
is proposing to make it illegal for health professionals to have sexual
relationships with patients.
They have formed a group of people representing vulnerable adults
which hopes to come up with proposals for this.
The issue of vulnerable adults is quite topical for them at the
moment given the government’s guidance earlier on in the year but much
of the discussion is limited to looking
at vulnerable people in terms of older people and people with learning
disabilities; mental health is not getting much acknowledgement and there
is a failure to comprehend that people actually move in and out of
vulnerability.
They are promoting their work quite a lot and a couple of new
staff who have just joined to do the case work.
Frances said that as a Patients Forum representative, she had
been sitting on the DOH Regulation of Independent Health Care group.
At the meeting she had attended she had been the only patient
representative there among men from BUPA etc.
It was focusing on a traditional medical model of what needs to
be regulated. Various
establishments like The Priory will not be subject to regulation.
They are holding a patients workshop on the 20th
November and they have asked for three representatives from POPAN.
She felt it was fairer to offer the other two places to Patients
Forum members so asked if anyone at the meeting would be interested in
attending. Ruth
Taylor (Haemophilia Society).
There has been recent
publicity on new variety CJD saying that blood may be a means of
transmission. This
has given new impetus to a campaign they have been talking about for
some time, namely about having all patients treated with artificial
factors and not human derived factor 8 and factor 9.
At the moment the situation is that for children up to the age of
16 in England and Wales (and all adults in Scotland), are treated with
these artificial factors but it is a treatment by post code issue.
Recombinant is very expensive and they are re-activating their
campaign to get all patients with haemophilia treated with
artificial factors. Kristin
McCarthy (Doctor Patient Partnership). They
do health promotion campaigns and their forthcoming campaigns are (a) the
use of antibiotics (at the beginning of January) and (b) polly’s pharmacy and older people, which they are doing
that with the Royal Pharmaceutical Society and Age Concern. This is about the interactions between prescription drugs and
OTCs and they are doing a brown bag campaign where people can bring in
everything they are taking and talk to the pharmacist about likely
interactions. They are also involved in the Transplantation Partnership
which is a group set up by the BMA and they are trying to increase the
number of organs available for transplantation.
They are doing press and PR work around this. They also produce the NHS Direct Health
Care Guide. This was
previously for sale. They
have put a lot of pressure on government and these guides will now be
free to anyone who wants one. Contact the Doctor Patient Partnership if
you would like to receive a copy. Nikki
Joule (Neurological Alliance). They
won their appeal against the decision by the Appraisal Committee on beta
interferon. This was a
joint appeal by two members of their Alliance – the MS Society and the
MS Research Trust. This
is good. What this means is
not that beta interferon is now going to be available on the NHS but
that the decision goes back to the Appraisal Committee with a final
apprasal around the end of January .
Not all of the points in the appeal were upheld but many of them
were. Some of these points may be able to be dealt with quite
easily but others present more or a challenge.
For more information, there is a 25 page Decision setting out the
details on the NICE website.
A small amount of new evidence has now been
submitted, and because another drug study for MS has now been given its
product licence, this has been thrown back into the equation. This means
that the final document in January will then be subject again to appeal.
The procedure says that after an appeal the decision is then
final; however, this will
be subject to appeal again. This
could go on and on and on and has huge implications for the workload of
the organisations involved. It
also prolongs the agony for people waiting to know whether they are
going to get beta interferon or not.
Because of the leak in the summer, which means that the original
decision is in the public domain, since then hardly any prescriptions
for beta interferon have been initiated.
On another area of work, specialist nurses, they are going to be
doing some work within the Alliance to draw up a policy. This is an
issue for most organisations in the Alliance whether they have access to
specialist nurses or not. Rahana
Mohammed (LMCA). Like
many other organisations they are running to try to keep up with all the
issues coming out of the NHS Plan.
They are trying to set boundaries when responding to requests for
information, particularly with the NHS Information Authority who were
asking how they could access LMCA members.
LMCA replied that this would be up to Information Authority and
it was something the LMCA would negotiate on.
The Information Authority then began talking about commissioning
pieces of work. This is how LMCA is beginning to start dealing with such
enquiries, to slow the process down a little and make them think.
A lot of the work they are doing is reactive and we are trying to
slow that down and become more pro-active.
Regarding the Human Rights Act, this also has implications
internally for a lot of voluntary organisations in terms of employment
rights. This is something
they are also looking at, in
terms of their membership, of patients and also internally. Eileen
Neilson (Royal Pharmaceutical Society).
In the wake of the NHS
Plan, a National Pharmacy Plan was published in September this year and
a lot of this is about improving access to medicines and to pharmacy
services. Some of the initiatives include: medicines management, repeat dispensing, out of hours access
to medicines, e-pharmacy, electronic prescribing by pharmacists.
The second area they are working on is work on self-care and the
pharmacy role in self-care. They are hoping to publish a policy paper on
this early in the New Year. Ray
Appleby (Association of Community Health Councils England and Wales). ACHCEW
is very much not running a save the AHCEW campaign but is very concerned
about Section 10 of the NHS Plan and in particular concerned for the
need for an independent integrated mechanism with statutory powers to
ensure patients empowerment. There has been growing parliamentary support.
There was recently an all-party parliamentary group with
attendance by over seventy MPs which the Minister attended.
There was House of Lords debate.
There is currently an early day motion.
AHCHEW will be holding a seminar on the 4th December,
which the Minister will be attending, looking at the way forward and
looking at these issues. Increasingly,
of course, it is a matter of accepting that CHCs are being abolished (at
least in England they are but not in Wales) and seeing how we can best
work with the proposals, looking, for example, at PALS and challenging
the notion of PALS being advocacy. Imelda
Redmond (Carers National Association).
The main issue CNA has been focusing on this year has been carers
and poverty. Over the last couple of weeks there has been a number of
very significant announcements about improvements to carers benefits. If members have newsletters that go out to carers and would
like to provide information about this, please email Imelda (imelda@ukcarers.org.uk)
and she will forward details. This
is the biggest change there has been forever.
In January CNA is holding a conference on Long Term Care and
information will be put up on the Patients Forum website. Finally, Carers Alliance is having a discussion
on 3rd December around the NHS Plan and if members are
interested in attending, contact Imelda and she will send further
information. Next
Patients Forum Meeting Thursday 18th
January Dates
for 2001 All
meetings are on a Thursday, start at 2.00 and will be held at the
Consumers’ Association: January:
18th The Human Rights Act 1998 – Implications for patients’ rights and representative organisations. Speaker: John Halford, the Public Law Project
John began by
describing the Public Law Project.
It is a very small legal charity which focuses on areas of public
law – how public bodies exercise their duties and their powers – and
looks at ways in which disadvantaged groups can better input into
decision-making processes and challenge bodies when decisions go wrong.
They have carried out research and undertaken test cases,
initially in the area of community care law and more recently around
health issues and, in particular, around the Complaints Procedure. Since
then they have written a patients guide to the Complaints Procedure.
As lawyers they are quite excited about the Human Rights Act (HRA)
as it potentially impacts on all areas of their work.
The notes John produced
for his talk are not attached (but were sent to those members and
subscribers who were not at the meeting).
Some additional comments are below.
Background to the Human Rights Act
The HRA was part of the
Labour Party’s constitutional agenda along with devolution.
It was one of the main manifesto commitments.
It brought the European Convention on Human Rights, which Britain
as been a signatory to since the 1950s, into British law.
One of the features of the HRA is that it obliges decision
makers, and public bodies in particular, to take into account Convention
principles when they take decisions.
The idea behind this is that the HRA is not just something that
can be used by courts and lawyers to argue about when someone takes a
test case in the future but is something that is supposed to operate in
a very pervasive way and be part of decision-making at every level. “Public authorities”
The HRA makes it
unlawful for a public authority to act in a way which is incompatible
with Convention rights.
But what constitutes a “public authority” as far as
organisations representing patients are concerned?
John said this was one of the most contentious areas because at
the moment there are a number of voluntary organisations that are
starting to think about whether they will be subject to the Act in
relation to the way they discharge their functions. There is some advice
going round to CABs that they may be subject to the Act.
Certainly providers, and particularly providers that have a
direct relationship with the NHS or which are funded to provide NHS type
services, particularly in the mental health field, may well be subject
to the Act.
In the notes there is a copy of the Home Office Guidance on this
issue. Key Convention principles
The Convention came
about in response to the events of the Second World War and primarily
focused on civil and political rights.
It has evolved over the last fifty years to include health and
access to treatment; these are considered to be a social/economic right
rather than a civil/political right. It is the citizen receiving
something from the state in the form of assistance rather than the
freedom from state interference in a citizen’s life. This includes freedom from discrimination on grounds of
disability and, in some limited circumstances the rights to healthcare.
It is not fixed as set out in the text.
It is important to become familiar with the way in which the
Convention has subsequently been interpreted by the Court. Rights in the health context Article 2.
This arises over the provision or withdrawal of treatment and
negligence. This
says that “Everyone’s right to life shall be protected by law.”
Many of the cases John has been involved are where the health
body has said that it would not provide help to the patient.
The question then arises as to whether they have any obligation
to provide help. Article 3 is
protection against torture, inhumane or degrading treatment and
punishment. This has arisen a number of times in relation to health
issues and the main case has been V v UK.
This concerned an illegal immigrant who was intercepted on his
way into the country. He
was imprisoned for importing cocaine and developed AIDS.
After he had served his sentence the government proposed to
deport him back to St. Kits where there was no treatment available for
that condition. He
petitioned the European Court of Human Rights. The Court concluded that deportation would have the
consequence of depriving him of treatment and of a certain quality of
life (and possibly of life itself) and this would breach Article 2.
This was an unusual set of circumstances but there could be a
situation where a health authority sets a policy to refuse treatment for
a particular medical condition and as a consequence the medical
condition of the patient would deteriorate.
One of the questions that will undoubtedly be asked in the courts
in the coming years is whether Article 3 has been breached. Article 5 states
“No one shall be deprived of his liberty” except in particular
situations. In the mental
health context this may mean that informal admission contravenes Article
5 and a case is currently going to Strasbourg about this. Article 6
“..everyone is entitled to a fair and public hearing by an independent
and impartial tribunal established by law…” This applies
to the Complaints Procedure. Article 8 would not
seem to have any relevance to health but because of the creative way in
which the Strasbourg Court has approached the interpretation of this
article, it is probably the most important one in the health context.
This says “Everyone has the right to respect for his private
and family life, his home and correspondence.”
This is a “qualified” right and so it is possible for the
public authority to interfere with the exercise of that right when it is
necessary to do so in the interests of a democratic society. The Court has
discussed measures that interfere with private and family life, e.g.
restrictions on disabled people using public facilities. The most
important case so far was the ex parte Coughlan case where
someone was living in a long-term NHS continuing care facility, which
the health authority proposed to close, and the person argued that when
she went into the facility she had been promised that it would be her
home for life but was now being told she would have to move.
The Court agreed that she was living in a “home” and moving
the person out would be an interference with the right
to respect for her home and no justification had been provided by
the health authority for this action.
Article 9 “.. the
right to freedom of thought, conscience and religion..” is significant
in relation to people who do not wish to have medical treatment on
grounds of their religious or philosophical convictions. Article 12
“…the right to marry and to found a family..” may be
significant in obtaining help from a health authority in assisted
reproduction. Article 14 refers to
discrimination of all forms. Problem
areas This is where there
is a tension between existing law and practice and the requirements of
the Convention. It is difficult to be definite about this. 1.
Do Not Resuscitate
(DNR) orders. Sometimes a doctor may decide that a patient’s
quality of life is not going to be improved by medical intervention and
a notice is then put on their records to the effect that in the event of
the patient having a heart attack or stroke etc there should not be any
medical intervention. This
is potentially lawful but there are also many problems that arise from
these practice, the main one being whether the implication has been
discussed with the relatives or carers.
This will have to change because it goes against the grain of the
positive obligation in Article 2 that talks about respect for life.
The NHS Executive is aware of this because it recently issued new
guidance on DNR including the need for proper consultation, the
recording of the decision etc. 2. Access to
treatment. Included
in the notes is an article about this 3.
Waiting lists and delays.
John did not think that the HRA would add anything to existing
arguments about delays in obtaining treatment.
As there is no “right to health” there is certainly no
“right to healthcare in a particular timeframe.”
On the other hand, withholding treatment or de-prioritising
treatment in a discriminatory way might well breach the convention
because if, for instance, the patient is told that their health
authority operates two waiting lists for a particular procedure, one is
for people who are over 60 (and that is a very long waiting list) and
the other is a fast track for people under 60. The patient is 61 and the
fact that they are not receiving medical treatment is having an impact
on their family life, or the ability to interact with other people,
etc., In that situation the patient would be able to argue that the
health authority might be entitled to delay the treatment or to withhold
it altogether but they are not entitled to discriminate against the
patient on grounds of age in deciding whether they can be treated at
that time. 4.
Continuing care.
This applies more widely than just to people who are in NHS
facilities. It might also be significant to the way a health authority
provides services in the community, For example, if a Health
authority decided to cut back on its district nurse service with the
result that people who were receiving treatment for bedsores, changing
of dressings etc at home would have to go into hospital, that might
involve a potential interference with Article 8.
It would certainly call for the kind of justification that is
required by the second clause. 5. Access to information. Article 8 also covers this area. Although the Data Protection Act is generally compatible with Article 8 there are some gaps in it and it may be that the Convention could be used to plug these and give rights of access where they do not currently exist in that piece of law. Access to medical information is a key part of the right to respect for a person’s private life as set out by Article 8. One of the areas of difficult is in relation to mentally incapacitated adults who may not have the mental capacity (or are considered not to have it) to make a request for access to their records; in such instances the DPA cannot be used to obtain the records. The family/carer may want to go to court and argue that to refuse to release the records amounts to a breach of Article 8. Regarding
public health information, the Court has said that in certain 6.
Consultation. This is of particular interest to patient representation
groups. With the abolition
of the CHCs and their replacement with other bodies, the statutory
obligation that health authorities had to consult with CHCs will
disappear and there will be no particular independent body for health
authorities to consult. However, in many situations the Common Law
requires consultation by a public body with representative groups or
with affected individuals before a particular step is taken and
certainly there is every reason why representative groups should use
these opportunities to put forward arguments.
Once a dialogue has started with a public body that body will be
required to provide clearer justification for its decisions than the
Common Law has hitherto required. 7. Resolution of complaints and disputes. Article 6 will apply to the courts when they deal with negligence cases but broadly it will not introduce anything new. Complaints are a different matter. In John’s view, the Complaints Procedure does not at the moment have to be compliant with Article. 8.
The main way in which a
panel may currently become involved in a John concluded by saying that there was a lot of scope for using the Human Rights Act in a constructive way, particularly regarding a dialogue about patients’ rights. If members needed advice on any issues relating to the Act Public Law Project has an Advice Line open Tuesday and Thursday mornings. The number is: 020 7467 9800. |
| Last updated 21/5/2001 | © The Patients Forum 2001 |