Examination of Witnesses (Questions 60-79)|
Rt Hon Dawn Primarolo, Mr Paul Whitbourn and Mr Jonathan
30 OCTOBER 2008
Q60 Baroness Neuberger: Which they
might do on transplants, for instance.
Ms Primarolo: We would want it to be
set in the conditions about taking decisions on the capacity of
whether we could accept that patient into a Trust. Obviously,
once they have been accepted, their treatment has to operate on
a non discriminatory basis within the Health Service. Emergencies
do happen and people do not get treated quite as quickly as they
wanted to. We are consulting on how we would make sure it is non
discriminatory once they are in the system, but have a clear view
about capacity, because our first duty is to the overwhelming
majority and that is how we plan and manage the Health Service
nationally. This is, of course, for all of the UK, so the devolved
administrations are also part of this consultation. I speak regularly,
and my officials speak very regularly, to their officials about
their views on this. We just do not know. Every health system
will think they are the best and we are going to pull in loads
of people. I certainly feel that and I think we need to consider
Q61 Baroness Neuberger: I think it
is going to be complicated. Can I move on to equity. One of the
things that appears to be the case is that there will be a requirement
for people who are coming from other countries or going to other
countries to pay for their treatment upfront and then claim reimbursement.
All the evidence that we have hadvirtually all, anywayhas
said that this is really inequitable and that the people who do
not have the resources to provide the money upfront are going
to be stuck. We wondered what you felt about this and, also, about
the patients who go to other countries, get the amount of money
that was available in their own country for that treatment, and
then top-up? How is that going to work? What is your view, particularly
as we have debate on topping-up going on anyway?
Ms Primarolo: I will not be drawn, at
the moment, into top-up, if you do not mind. First, the Member
State is responsible for the payment of the treatment that they
decide they are going to pay for their national to have in another
Member State. We are planning to decide it on the basis of professional
diagnosis, clinical requirement, treatment. I think there are
two levels of equity working here and they are difficult to put
together. The first is for the overwhelming number of patients
who will stay in the NHS. We have to make sure that if we have
patients travelling inthe points you were asking just nowthat
does not affect our capacity to offer them the treatment to which
they are entitled. For those who do have prior authorisation and
travel, there are then two issues, and they are issues now. One
is: Is there a discrimination between those who can afford to
pay upfront and those who cannot? What does that mean and what
should we do about it? We have individual equity but then we have
the equity of all of us, of our community. Travel is another issue.
At the moment, we reimburse, and it works, but we are consulting
and asking for views on this.
Of course, on the other side, we have to be mindful who we would
pay it to if we did pay it upfront. That takes in some very difficult
areas of fraud and how we would be sure they would go. Then there
is the question of subsequent complications when they are back
in the UK. Of course, on what some people call the "rescue
principle", you are in the UK and we treat you regardless.
I think we still need to do a lot of discussion around this point,
because we could end up with only the wealthy having rights to
access and that clearly would not be acceptable. We would not
want to deny them because we know the right has to be provided.
It is provided now. I cannot give you a definitive answer. We
are asking and I am concerned about how we would start issuing
money to individuals before they have their treatment.
Q62Chairman: We will continue to ask these questions.
Ms Primarolo: Yes. It is vital.
Chairman: Whether we come up with anything
helpful, we will continue.
Q63 Lord Lea of Crondall: Minister,
I can understand why it is very, very complex, but you have used
the phrase a couple of times "States will determine the flow,"
or words to that effect, and I can understand how we can determine
the flow authorising payment outwards, but at the end of the question
we are asking about a significant net inflow and I cannot quite
follow the process of determining, in other words rationing in
some way, or making decisions on the flow inwards. Either you
have a system set up with criteria and then it is automaticity
after that, or somebody is going to say case-by-case, "Yes,
you can come"; "No, you can't." Could you comment
more on the inward side of it. I do not see how you can determine
Ms Primarolo: Yes, that is a difficult
issue, but the Member State receiving the patient can refuse to
take the patient.
Q64 Lord Lea of Crondall: Without
going to the ECJ?
Ms Primarolo: That is one of the things
we need to get clear in the draft Directive negotiations, that
in order to protect our own capacities we would have to have the
ability to say, "We cannot take your patient, sorry, because
all our resources are being used in treating our own and we have
no spare." It may need to be done on a case-by-case basis
because it would tend to be the specialist treatments. For instance,
we have put a huge amount of effort into reducing treatment times
for cancer, and speed from early detection through diagnosis into
treatment. We could not have that being disrupted for everyone
else by an inflow of people who wanted to use that service as
well. That is one of the things, I am very clearand I appreciate
you are drawing me back to itthat we will need to establish
in a better way in the draft Directive.
Chairman: We have another question about
national structures that Lady Perry wants to ask.
Q65 Baroness Perry of Southwark:
I think you have answered part of my question and the question
from Lord Lea is very relevant to this. At the present moment,
access to care is determined at a local level, not at a national
level, and we have no national eligibility criteria at all. Do
you think that Article 6 will require the NHS to adopt national
eligibility criteria? What impact would this have locally? How
would you plan to calculate and publicise the cost of care, as
Article 6 requires?
Ms Primarolo: We do have eligibility
for us inside the UK, in terms of it is determined by diagnosis,
identification of clinical need, and treatment. There is already
a mesh between setting the standards and the requirements for
the NHS and then the local determination. We can see no reason,
in determining people's access inside the UK, why that would be
questioned. The European Union has no locus on telling health
systems what their standards should be or what their criteria
should be. We are not seeking to determine the criteria for Germany
or France; their health systems determine that. The only interconnection
is that if a patient has an entitlement to something in Germany
and chooses to have the treatment via this mechanism in the UK,
our consideration is one of are we going to take that patient
on the point of capacity and ability to treat.
Q66 Baroness Perry of Southwark: You
used the word "our". Who would that our be? If somebody
in Germany was referred by their own consultant to the UK, would
there be any mechanism whereby the whole of the UK structure could
be looked at, to say, "We couldn't take him in Newcastle,
but we might be able to take him in Hull" or something like
that? Or would they have to apply to a specific consultant in
a specific hospital? If that consultant said, "I'm sorry,
the queue is already too long," would they be able to be
referred around, to say, "We've got vacancies elsewhere."
How would it work? Who would make that decision?
Ms Primarolo: The patient has already
decided where they want to be treated and by whom, so they will
specify. They will not come to the UK and say, "We have a
cancer patient, where can you fit them in for rapid treatment
across the UK?" It will come in as a specific request for
a specific consultant in a specific hospital, who will determine
whether they have the capacity to take that patient.
Q67 Baroness Perry of Southwark: And
Article 6 does guarantee that it will be done that way.
Ms Primarolo: I believe so, but we will
obviously need to make sure that it is absolutely clear. That
is the important point about the referral pattern that will exist,
and at what point it will enter the UK system, if it did, for
a patient in another Member State. That happens now. People ask
to come and be treated in particular hospitals. Our own patients
do it in discussion with their GPs. That is why this idea of having
a national requirement on eligibility or criteria is not necessary,
because this draft Directive is about individuals not systems.
Q68 Chairman: In some specialisms
it already happens, does it not, that there are exchanges?
Ms Primarolo: Yes.
Chairman: Minister, I am aware that the
time is running on. I would remind the Committee of that because
we do want to get through a lot of questions with you. This is
extremely valuable. I am going to move on to Lord Kirkwood, because
one of our key concerns is: How do they know?
Q69 Lord Kirkwood of Kirkhope: Indeed.
Article 10 of the draft Directive talks about an obligation to
provide information. Would you confirm that is merely on request.
There is no obligation to promote any of this new service. I hope
that is a yes or no answer.
Ms Primarolo: There is no obligation
to promote it. I was looking for all the sitesI have a
list of thembut, forgive me, I cannot find it. Because
of the Watts case, there is already information and access
via NHS references that individuals can access to know how they
go about seeking prior authorisation to be treated somewhere else,
but we are not obliged to promote it and we would not.
Q70 Lord Kirkwood of Kirkhope: That
is all I need to know.
Ms Primarolo: I just want to be clear.
We would not keep the patients' rights a secret from them, because
that would not be permitted. They are entitled to know their rights,
but it is not something where we will have posters up everywhere
saying, "Would you like to go to France?" I am sure
lots would, but not for treatment!
Q71 Lord Kirkwood of Kirkhope: Could
I refer you very briefly to your written evidence, which is very
helpful. In paragraph 18 you say, "Nevertheless, we have
concerns about how much practical information about treatment
options in other states the NHS will be able to provide."
If we are talking about practical information, how on earth is
the NHS expected to know what is happening in Luxembourg?
Ms Primarolo: That is the very big question
and you are quite right to settle on it. This is my view and I
would be interested to hear whether you think it is incorrect.
If one of our citizens says that they want to go and be treated
somewhere else and they are in the prior authorisation process,
clearly we will want to provide as much information as we can
to them of the risks as well as the opportunities: the risk that
you are away from home and these health systems are not exactly
the same as the UK; that you may not be spoken to in English all
the time. That does raise the question of how much information,
once an individual has asked to be referred somewhere else, we
feel we can give them, and then how we convey to them what we
are unable to tell them. Therefore, it is ultimately up to them.
Also, they will have to give us permission to release their records,
and I think we need to do that on consent, on an individual basis.
Our ability to know what is going on somewhere else is going to
be difficult, of course, and it will be incomplete, and we will
have to convey that. I think we have a duty to do that. If you
think not, please say. It will not be in the Directive, it is
how we might try to apply it. There are not the same rights, there
are not the same standards, there are not the same styles of treatment,
there is not the same access to treatment.
Q72 Lord Kirkwood of Kirkhope: You
can give us an assurance that this is something you are focused
on and you are going to continue to keep up the pressure to try
to get a better understanding of exactly what is expected of Member
States in this new system.
Ms Primarolo: Yes. And what is not expected
of them because it is not deliverable. You can have headline messages
that look very sensible, but they are absolutely not deliverable
and we need to avoid those.
Q73 Lord Kirkwood of Kirkhope: That
is very helpful. You might be able to help us with notes on these
two things. The Committee would like to have a better understanding
of what the Commission are talking about when they refer to a
"standard Community format". I do not know what that
would look like. Does the department have an understanding of
what it is supposed to provide and what it would look like and
whether we would be in favour of it? I have a second point in
terms of national contact points. I have looked at the papers
and I have only a very vague understanding of what the Commission
have in mind with these things. With the exigency of time facing
us, it may be that a note to the Committee would suffice, but
maybe you could deal with it very briefly in the evidence this
morning or take it away and send us a note.
Ms Primarolo: Are you referring here
to the question of the issue of prescriptions, the e-health
Lord Kirkwood of Kirkhope: No, my understanding
is that it is only in relation to the provision of information.
Q74 Chairman: Could I ask that the
Minister is allowed to take this away, in view of the time, as
you suggest. Maybe your officials could let us have a note on
Ms Primarolo: Yes.
Chairman: That would give us an opportunity
to move on.
Lord Kirkwood of Kirkhope: It is just
clarification. I do not know how difficult it is, but it would
be very helpful to get it clarified.
Q75 Chairman: Thank you very much.
Of course all this takes us straight on to this question of liability
and redress, the question of what information they should have,
what our expectations are, and what happens to them when they
get there. To what extent are you content that the UK meets these
requirements already? How content are you with the UK system of
discretionary indemnity?and we have to say that we have
had critical evidence about that. Could you explain what you are
referring to in paragraph 18 of your evidence when you state that,
"Patients will need to ensure they have adequate insurance
arrangements to cover their treatment"? That sounds like
a straightforward sentence but you can understand why it needs
Ms Primarolo: Nothing is straightforward
Q76 Chairman: If all Member States
apply Article 5(1)(d) and (e), surely there should not be a need
for such insurance.
Ms Primarolo: There are differences.
The NHS has a system for complaints and then we have liability
requirements. These are not the same across all of the European
Union. In particular, in the UK, when items become actionable
for neglect or harm that leads to compensation. Our view is that
Article 5 is not clear enough with regards to how complaints,
liability and negligence fit together. We do knowand this
comes back to the point I was making about information to patientsthat
the patient will be within the liability and the legal framework
of the Member State in which they are treated. They will not be
within the UK. It does not follow them. Therefore, it may be that
they will not have as much from cover for those items as in the
UK. We need to try to be clear on the limits, so that people at
least are aware and have the opportunity, if they wish to, to
insure themselves further in those circumstances. Because they
are not in the UK system in Germany.
Q77 Chairman: I can hear the patient
saying, "But this consultant gave me the information and
I then went to this country where things went seriously wrong.
What is the liability of my consultant who suggested I should
go?" Is that where we need the clarity here?
Ms Primarolo: We need the clarity that
this is not a referral. The consultant will need to be very clear
on that. It is an individual's choice to exercise a right to access
outside the UK. We are not providing for new rightscoming
back to what maybe Lord Kirkwood was trying to get to. This draft
Directive does not provide new rights; it codifies what already
operates. We are not creating a European-wide health service whereby
consultants can decide to refer somebody somewhere else.
Q78 Chairman: I think in your earlier
evidence you said that a clinician would have to agree that the
treatment was necessary and that the clinician who was going to
receive was an appropriate clinician. I am only seeking the clarification
which I think is what you are really looking for in the Directive.
Ms Primarolo: There are two separate
issues here. One is that the treatment that is determined is determined
within the United Kingdom framework. All of us are treated exactly
the same, and that is how we reach the point where you have clinical
need and what your treatment is. It is entirely separatebut
important for us, because of the way our health system worksfrom
the proposition that this draft Directive is seeking to provide
for, which the case law provides for, which is that an individual
can choose to receive payment and have that treatment somewhere
else. It is an individual's choice. It is not about systems. It
is not about referral. It is not about saying, "Here is a
European-wide health service, I will take my money and go somewhere
else," as inside the NHS. That is why these very difficult
issues of insurance, standards, negligence, all the things that
we have been talking about, need to be clarified. This is the
first draft. The principles, as I said at the beginning, are okay,
and we are happy with themsome we are not, and we are doing
further negotiationbut even those principles we need to
be clear exactly what it means. In terms of the additional requirement
on indemnity, as I understand it the current framework for legislation
has been put in place and does not apply in that sense because
it reserves it for the Member State. I know there is some discussion
around this and we will continue to look at that, but we think
that is a separate issue. I am sorry I am giving a rather long
answer, but it is very important that people understand that it
is not referral and that members of the public understand this.
They are making an individual choice and they take the responsibility
for stepping outside the NHS. We cannot do anything about that.
If they come back and there are complications, without question
we will pick that upand that is something else we are going
to have to sort out: we will not say, "No, you had that done
somewhere else"but there will need to be some clarification
Chairman: That is extremely helpful.
It gives us some questions too to ask the people who are raising
issues around this. Lady Gale is going to ask questions about
language and after-care.
Q79 Baroness Gale: Good morning,
Minister. I am going to ask about practical concerns, although
I think most of us this morning have been dealing with practical
matters as well, on after-care and language. In your evidence
you acknowledge the practical impacts of the Directive and you
consider that after-care should be the responsibility of the Member
State of treatment but follow-up care could be provided by the
Member State of affiliation. Are you seeking to clarify in the
Directive where these responsibilities lie? As far as language
is concerned, you say that the patient will need to make adequate
arrangements "for addressing any language difficulties".
What level of obligation do you consider should fall on the patient
to overcome any problems relating to language and what responsibility
should lie with the medical provider?
Ms Primarolo: On the question of the
immediate after-care, I think it is not unreasonable and we can
all accept that immediate after-care comes to be done where you
have had the treatment in the first place. That is what we would
expect. But the draft Directive is not particularly clear and
I also appreciate that working out the language around providing
for that could be somewhat difficult. Where there is difficulty,
it is in the consultation. That is why we are doing the consultation
document in asking some questions around that issue of after-care.
What do we mean by after-care? Immediately? What if you have something
and your after-care is that you should be in intensive care? What
if a few days after you need intensive care because a complication
develops? I would like greater clarity, I do not know how to get
it. I think it is fraught with difficulty and that is why we are
consulting on it. But at the moment I do not think it is unreasonable
to say we would expect a certain proportion of that after-care
to be located with the patient when they have the treatment in
the first place. On the question of requirements for translators,
the Health Service itself plans for that now. Again, it is in
the consultation. But, personally, I am not minded to put this
in as a blanket requirement. I can see the difficulties, but if
we start from the proposition that an individual is making that
choice, that is one of the issues maybe they would need to consider.
It is working out this very difficult line of codifying what is
a right now. I make no bones about it: I am intent on making sureI
would say thisthe National Health Service is the best service.
I want it protected. I do not want to leave it open to further
legal challenge if I can avoid it, and I do not want to extend
rights because capacity planning and delivering the service that
the overwhelming number of citizens want close to home could be
undermined by this. I suppose that you could say that I do not
think we should provide a blanket requirement, but if somebody
comes up with a really convincing case then of course I will look
at it. But it is really important to understand that this is an
individual choosing something. If an individual chooses to go
private, we do not have all these things about what is the NHS
going to do. They are stepping outside our system with the right
to take the money.
3 This remark deals with equity and the fact that
we currently reimburse travel for patients in the UK with limited
means. We are consulting on the issue of equity in our consultation. Back