Examination of Witnesses (Questions 200
- 214)
THURSDAY 6 MAY 2004
DR KERI
THOMAS, MS
CORINNE LOWE,
MRS ROWENA
DEAN AND
MS SUZY
CROFT
Q200 Dr Naysmith: Moving on but still
staying with the quality of care issue, we have also heard some
awful stories about terminally ill patients dying in Accident
& Emergency departments, having been referred there by on-call
services that do not really understand the situation. Does that
happen frequently?
Dr Thomas: I have done some work,
particularly on out-of-hours, because one of the big crises is
what happens in the middle of the night. My GP colleagues were
saying, "We do our best Monday to Friday but at the weekend
it all falls down." So we did some work on introducing a
communication, a handover form, which actually said what the diagnosis
was and what the patients requested, where they would like to
be cared for, and what the management plan was. It asks what would
you do if you were called in. We have been able to show that there
are fewer hospital admissions and more people die where they choose
because of that. The other aspect is having the drugs available,
and having 24-hour district nursing is absolutely crucial, and
having other social care available. There are some big things
that are happening. We are at a very pivotal time now with the
change in out-of-hours.
Q201 Dr Naysmith: Will that have
a beneficial effect or a worse effect?
Dr Thomas: There are a few examples
where it might become better but there are many possibilities
of it becoming worse because there is more chance of handing over
care. What we are trying to do with the Gold Standards Framework
is think ahead, with anticipatory care. We know that there is
less need for the out-of-hours crisis where people are planning
ahead. When the drugs are in the home, they know what to do, and
if there is a problem, "this is who you call; this is what
you do".
Q202 Dr Naysmith: That is talking
about an on-call palliative care service, where people can get
information and assistance.
Dr Thomas: It is also really about
the in-hours planning, and there is an awful lot that can be averted
if we do proper in-hours planning. Have we got the right quantity
of drugs in the home; if something happens, whom do you call and
what do you do? Sometimes it is just reassurance. The trauma comes
when the out-of-hours doctor does not know the patient and does
not even know if it is cancer or what the diagnosis is and cannot
do much else, with difficult symptoms. The doctor sends the person
to hospital and the whole family is de-skilled; there is this
feeling they cannot cope and they become institutionalised. It
is very difficult to discharge patients in that situation. If
you can build the confidence of the home team and family as well,
and avert that initial admission, you are more likely to keep
them at home.
Ms Lowe: Patient-held notes: it
works with children.
Q203 Dr Naysmith: I was going to
pick up on that point; the idea that an out-of-hours doctor might
arrive and not know. It is different with an emergency, with a
child that has eaten something; but this is a patient with a record
and nearly at the end of life; and you are suggesting sometimes
on-call doctors arrive and do not know what is going on.
Dr Thomas: It was the majority,
but now more people are using the hand-over forms, so at least
the doctor arriving knows the diagnosis and where they would like
to be cared for.
Q204 Dr Naysmith: In many cases there
will be relatives who will tell the doctor arriving what the diagnosis
is—
Dr Thomas: But they might not
know the management plan and—
Q205 Dr Naysmith: Sure.
Dr Thomas: Where the drugs are.
Ms Lowe: Our cancer patients in
South Devon carry their own notes, and any medical professional
is allowed to write in them. If I am doing the treatment at home
that is relevant, I will pop it in the notes; they will take it
into hospital with them and bring it out. Then I know what treatment
they have had and what reactions they might get. It just makes
it a seamless service.
Mrs Dean: All the services add
to those notes.
Q206 Mr Burns: Dr Thomas, when you
talked about the out-of-hours service, you said that in some areas
it would be better than others. What areas would be better?
Dr Thomas: There are a few areas
which are particularly focusing on this and developing particular
support. The most vulnerable patients are dying patients. Many
people have said this to me: of all the people that you look at
in out-of-hours, it is the dying patients that are the most vulnerable,
and maybe other mentally ill patients, special needs patients.
Some areas are particularly focusing on that and having a streamlined
system so that they do not go back through NHS Direct and can
avert that. Many GPs give their home phone number for dying patients.
Many people around the country, and many nurses, do it, unsung,
on call all the time. We cannot rely on that as standard practice
however ; we have to have a good out-of-hours service. The disaster
is that more doctors are likely to be involved who do not know
a patient, due to lack of communication. There are trials in electronic
health records that work quite well in Bradford and other areas.
Basically, the doctor turning up at the door of the patient in
the middle of the night ought to know what the diagnosis is, what
the plan is, and it is possible to get there. Otherwise, we are
going to have more crises in the middle of the night and more
inappropriate admissions.
Q207 Chairman: You mentioned a trial
of electronic records in Bradford. I am astonished how far behind
we are on the use of tele-health, tele-medicine, e-health, whatever
you call it. I have seen arrangements for people being cared for
in this country where a carer will type in a terminal, access
records and they are tying it back to a central organisation organising
it. Why are we so far behind in respect of that obvious care need,
to ensure people's information is there where they are, apart
from the piece of paper that was described and the hand-over forms—something
a bit more refined than that?
Ms Lowe: The major problem that
we have is that the district nurses have one system; the hospital
has a system; every GP surgery has a different system: none of
it is compatible. Where our co-operative is, our DevonDocs as
they are called, they should have access to all the patients'
notes throughout the south of Devon, in the area they cover.
Q208 Chairman: It is so obvious.
Ms Lowe: It is crazy.
Dr Thomas: An example where it
works well is in Toronto. They have all the details of the patient
on a palmtop; then the nurse adds on the palmtop, and it is fed
into a central system; and everyone knows what is going on. It
is not beyond the wit of man to develop something like that. Otherwise
care breaks down across the boundaries and there will be more
crisis admissions to hospitals.
Mrs Dean: We need to put some
resources in.
Chairman: In the next session we have
the minister responsible for IT in the health service.
Q209 John Austin: Is there a data
protection issue as well?
Dr Thomas: There is always that
concern, but usually you ask for the patient's permission for
this information to be handed on. One small point about resources
is that it is £300 day for a hospital admission. You save
a lot of money by putting resources into the community. Every
time we keep a patient home we are saving that money.
Q210 John Austin: You mentioned the
importance of the community district nursing service. When we
looked, six or seven years ago, at the health needs of children,
particularly children with life-limiting illnesses and long-term
illnesses, we found there was no comprehensive available paediatric
community nursing service. Has anything changed in the last six
years?
Ms Lowe: Not a lot, I am afraid.
I think other areas have progressed and increased their paediatric
services in the community, but there is still an awful lot of
the UK that do not have regular access. We may have phone call
access, but certainly not visiting our children.
Dr Thomas: It varies around the
country. Some areas would say it has progressed, but it is a kind
of lottery.
Mrs Dean: There are increasing
palliative care services for children, but not always funded.
Q211 Mr Amess: I have a couple of
quick questions about the workforce. Obviously there is not a
service without any staff, and you have already commented on the
shortage of nursing staff in palliative care; there is no career
structure, and there are issues in comparing it with the NHS staff.
How do you think these problems can be addressed—very quickly?
Mrs Dean: Funding, planning and
resources.
Dr Thomas: I would say, enable
the generalists to maximise what they do.
Q212 Mr Amess: The CDNA argues in
its written evidence that GPs demonstrate a poor knowledge of
pain and symptom control. Professor Richards thought that training
in palliative care needs to be part of GPs' continuing professional
development. Do you think it is sufficient that that should happen,
or for such training be mandatory for GPs, and essentially become
an essential prerequisite for revalidation?
Ms Lowe: I believe it should,
to be quite honest, because very often GPs will ask district nurses,
"What do you want me to give the patient?" We are nurse
prescribers, but we still do not prescribe controlled drugs. It
is very important for GPs to understand the concept of pain and
symptom control because it is almost like we have got the same
drugs and keep giving them that and they are not working, or they
have changed to something else; whereas somebody who has been
trained in symptom control would say they know the symptoms the
patient is suffering from because they have come across them before;
so they know what drug to go to. It saves patients an awful lot
of distress.
Dr Thomas: There can be a lot
of friction between GPs and district nurses about this. I agree
it should be part of basic training. Education is key to this.
However, it is not just throwing courses to people; it is helping
people learn as they go to develop a routine practice of good
care and to know when to refer on. Sometimes GPs feel a bit de-skilled
because it has not been part of their undergraduate training.
Things have moved on very much over the last 12 years or so. A
lot of GPs are doing extra training but we should raise the baseline
up with training and education and making it easier for people
to learn. Then I think there will be less friction. There has
been great progress. District nurses know so much more than they
used to.
Q213 Mr Bradley: Throughout your
written and oral evidence today the issue of finance has been
at the fore, not surprisingly. In the last few minutes you picked
up on the services provided because of the financial circumstances
of individuals, the issue of national tariff against actual expenditure
and statutory funding, and about the Delayed Discharges Act. Do
you want to elaborate on any of those points? For example, do
you think hospices should be included in the Delayed Discharges
provisions? What other financial recommendations would you make?
Ms Lowe: The evidence that was
given at the last hearing proves what a vast amount of difference
it is to have a patient in hospital or a hospice than at home.
There is a vast amount of saving there, and it is actually what
the patient and their carers want. If we had the nurses out there
24 hours a day and the resources, the equipment—I do not
think we are far off.
Mrs Dean: The national tariffs
will have a problem because of the variety of models of care in
the community. The national tariff work that has been done to
date is commendable, and I am working with it, but I do feel we
are going to have to look at national tariffs within community
care so that we have different levels. Where you have a community
care team with a specialist, it will be one level, and where you
have a generalist team it may be at another—at the moment
there is only one costing within the model. We were very excited
when the extra money came through for cancer and palliative care
generally, but we have to keep the pressure on our PCTs to continue
the service level agreements they already have with hospices because
there are examples around the country where current service level
agreement have been cut for the current financial year, whilst
at the same time we are being given additional money through the
cancer network; so it is a giving and a taking. That alarms me
for the long term.
Q214 Mr Burns: On the question of
the Delayed Discharges Act, the evidence suggested that one of
the knock-on effects is that there may be speedier assessments
to get people out of acute care, but because it does not apply
to hospices you are being seen as a haven for these people and
patients can stay longer in a hospice because there is no pressure.
Do you think it would be more productive to have a positive system
rather than a negative system, and instead of having a negative
system that imposed fines—which I suspect none of you would
welcome being imposed on hospices—it should be abolished
and replaced by a positive system of rewards to encourage the
same process to occur?
Ms Croft: In a sense I feel I
would rather start the other way round, which is what Corinne
was saying. The basic issue is this business of the lack of services
in the community, the lack of district nurses, in terms of not
being able to get the workforce, the lack of carers. If those
services existed in the community, and people were supported in
the community and were accessing palliative care services across
a range of diagnoses, all the issues we have raised today—I
feel the Delayed Discharge issue would be irrelevant. The whole
point is that we are not supporting people adequately within the
community, so they end up going into hospital. Then, whether you
have a positive or a negative system about being discharged from
hospital—clearly I do not favour the negative, the fines.
We have raised that issue, and it would have a really unfortunate
knock-on effect in terms of cutting the services in the community
which would help people not go back into hospital. For me, that
is the absolute basic thing, to have integrated health and social
care that is properly funded. In areas like London, where there
are real problems with recruiting the workforce and people being
able to afford to live in London, that is another issue that has
to be looked at imaginatively.
Chairman: Can I thank our witnesses in
this first part of the session, which has been an excellent session.
Thank you very much. Feel free to stay for the next session.
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