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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 2. - Choice in the NHS
RADIO 4
TUESDAY 13/09/05 2100-2130
PRESENTER:
MARK PORTER
CONTRIBUTORS:
STEPHEN MILLER
PAUL CUNDY
SUE JAMES
LORD WARNER
ROBERT CLEARY
MAYUR LAKHUNI
PRODUCER:
ERIKA WRIGHT
NOT CHECKED AS BROADCAST
MONTAGE
Danny, can I have a coffee please?
Yes, what would you like sir? A latte, cappuccino, mocha or flavoured coffee or espressos?
I'll have a latte please.
What milk would you like sir? We have full cream, semi-skimmed or skimmed milk?
Semi-skimmed please.
Semi-skimmed. And would you like to take away or have here?
Take away.
Take away, thank you.
PORTER
Today's programme is all about choice. Not at the coffee bar in the 成人论坛 canteen but in the NHS.
If you are a patient in England and you require a specialist opinion, or hospital treatment, then by the end of the year you should be able to choose where you want to be treated, and by whom. And it doesn't stop there - you are even going to be able to choose the day and the time that you see your consultant and pick a convenient appointment that fits in around the rest of your life.
I know - it all sounds too good to be true, but the Department of Health is serious about this, and hoping to have their new Choose and Book system up and running in at least 8 out of 10 GP surgeries by the end of the year.
Though not all GPs share their enthusiasm.
CUNDY
The patient choice agenda is being forced on patients without their choice. And it's being forced on the professionals without their choice because the government has said very clearly they want everyone to use the Choose and Book system, well surely you should have a choice to do otherwise, if you really have a choice agenda.
PORTER
And I'll be exploring the benefits of exercising a much more established form of patient choice, the second opinion. Whichever specialist or hospital you decide to choose under the new system, there is always the option of asking to see another doctor. Indeed in many cases it's the doctor who suggests it - which is exactly what happened to listener Geoff Dodds
DODDS
In June 2003 I was feeling some stomach pains, nothing sharp, but I thought I'd go to my local GP. From that local GP I had blood tests which indicated that I had a high blood count and he wanted to refer me to a consultant. The consultant arranged an ultrascan and then I got called back in to be told that it was malignant, it was such a large growth that it couldn't be operated on, that there was really no treatment - I was given very little chance of survival from this.
PORTER
Did they give you some sort of length of time that you might be alive?
DODDS
Yeah, they said that 95% of people who have a growth this size with treatment would not see more than two years. I'd just turned 50.
PORTER
That must have been a hell of a shock.
DODDS
Oh it was a total shock. I was not expecting it. I thought I may have had stones in the stomach or something but nothing as great as cancer, it really took me back.
PORTER
Now your specialist decided to get a second opinion, for his own sake, did you jump at the opportunity for a second opinion?
DODDS
I hesitated initially because I felt if I only had months to live I wanted to have in my time not going to doctors and that or hospitals. But I did decide to go ahead because when you're weighing things up you've got nothing to lose. This consultant had a different view to feeling that this could be liquid based tumour and he was prepared to risk an operation on it but the operation would be very tricky and very long. So I had the operation, removed my gall bladder, removed some of my stomach, went in at 9 o'clock in the morning and 11 o'clock at night I was wheeled out of the operation theatre. And the operation was successful because two weeks later he came back and says that there's no sign of any cancer, it was a benign growth and that I was cured.
PORTER
So the second opinion, in your case, not only went from changing your prognosis to a matter of months possibly but having surgery that turned out to be life saving in the end.
DODDS
It saved me life because the tumour would have in time killed me but by removing it I was now cured.
PORTER
Listener Geoff Dodds obviously pleased he took up his doctor's suggestion of seeking a second opinion.
I'll be coming back to second opinions later in programme, but first more about getting that initial consultation, and the new Choose and Book system that allows patients to choose which hospital and specialist they are referred to - and on which day, and at what time they are seen.
Under the new system patients will be offered a choice of one of four or five hospitals, and be able to choose a convenient date and time for their initial appointment. The idea being that the GPs will go through the various options with patients at the time they decide to refer , and - if the patient can make up their mind there and then - book the appointment directly over the internet.
If the patient wants to mull it over then he or she can take their options away with them and make the appointment themselves - via a telephone booking service, or over the internet if they have access to a computer at work or home.
The system was supposed to be introduced into every GP surgery in England by the end of the year and be dealing with up to 200,000 referrals a week, but technical difficulties and resistance from many GPs has meant uptake has been slow and that target won't be achieved. As of the beginning of last month, just 2,250 bookings had been made nationwide using the system.
But not all doctors are sceptical, Stephen Miller is a GP in South London and one of the doctors involved in piloting Choose and Book.
ACTUALLY - DR MILLER'S SURGERY
I'm a little bit concerned as to why you're hearing hasn't been getting any better. I've looked in your ear and there's nothing to see there. So I think the next thing we ought to do is to ask one of the specialists to see you. What do you think?
PATIENT
Okay, yes.
DR MILLER
What I'm going to do is I'm going to log on to the electronic Choose and Book system, alright? Just hang on a second, so we're just going to type your NHS number into here and search for you.
MILLER
In most cases the consultation goes much quicker, you can log on, you can make a booking and the patient can leave at least knowing where they might want to go if they haven't booked the appointment there and then. Some patients will want choice and some don't - almost all patients do want certainty though, the system does guarantee certainty that you will be able to find out when you've got an appointment there and then.
DR MILLER
There's five choices you can have there. Alright? Three of them are at the same hospital but with different consultants and two of them are at another hospital.
PATIENT
Is there a consultant you can recommend?
DR MILLER
Well I know a couple of the consultants there, I don't know the other ones but they're all likely to be just as good and ...
WARNER
Choice is an integral part of empowering patients much more to take control over their own health agendas. We've also found that patients themselves have expressed a wish to have more choice. The consultation we did in 2003 with patients showed huge support amongst patients of all social classes for more choice. So it's not something that we're just doing because we think it's good for patients, the patients themselves are saying they want more choice.
PORTER
Lord Warner - the minister responsible for delivering Choose and Book - but the British Medical Association begs to differ. According to a YouGov poll they carried out in June, patients aren't that interested in choice. Asked to prioritise where the money should be spent to improve the NHS, the ability to choose where you have an operation, came bottom of the list - one below better hospital food. The top patients' priorities came out as cleaner hospitals and shorter waits.
Paul Cundy is GP in Wimbledon, generally very pro electronic booking systems, and the BMA spokesperson on IT, but the choice aspect bothers him.
CUNDY
The government envisages doctors sitting down and discussing and perhaps even negotiating with patients, which of the five hospitals that appear on the list to go to. My experience is actually that patients want targeted advice, they want the doctor to say look the best place for this is here. I don't know the top ten local hip surgeons - I know the top two but I don't know the top ten. So if there's more than one or two on that list then it's nonsensical because I can't actually advise the patient - it's a lottery really. If you're in Leicester or Huddersfield or Huntingdon or some other town then often there is one local hospital and then there is everything else which is 50 or more miles away and patient choice is a nonsense in those circumstances. What they want is they want a good service to be in the local hospital in Huntingdon, they don't want to have to go to Leicester to get a service.
PORTER
And specialists in hospital have some reservations too.
CUNDY
The concerns that hospital doctors have is that under the current process a specialist receives a sheaf of letters or faxes or telephone requests from the local GPs and he's able to prioritise those, he can read them all, he can say this one's urgent, that one's not but book this one for a week or book this one for a month or so. Using the electronic Choose and Book system he has no control over that, it's simply the first person to hit the button gets the first appointment. And therefore consultants are quite rightly concerned about the lack of clinical input into delivering what is a rationed service.
JAMES
At the moment if a GP refers a patient to a consultant, if the consultant feels that the patient needs to see a different specialist he can refer him on.
PORTER
Sue James is chief executive of Walsall NHS Trusts.
JAMES
I think in the future that's going to be more difficult to do and may involve patients coming to hospital and being seen by the wrong person and then referred on at that stage. So again that could be not as good for patients as we're hoping the system's going to be.
PORTER
But to exercise their new found right to choose where to be treated, patients are going to need to be able to find out who is doing what where, and how well. Lord Warner again:
WARNER
Well I think what's going on here is a rather important shift within society. We've already seen over the past few years much more information about hospitals, the hospitals themselves have given much more information about what services are available. So you will actually have hospitals, I think, trying to attract patients where they think they've got a good service to offer.
PORTER
So are they going to be allowed to advertise in some form or other to say look we have a very good hip replacement, we have some of the best results in the country, you're in and out - you're going home a day earlier than you would be normally - the sort of things that might attract patients?
WARNER
Well I don't think we want to move down the path of fast food type advertising but I think we do want patients to be informed and that information to be in an accessible format. I've seen some pretty good booklets that actually some of the hospitals are now producing, which fairly present their services and I think we're going to see more of that. And those hospitals which aren't transparent about their activities, don't give information to patients, I think will be on the losing end of trade, so to speak.
PORTER
More about the criteria patients will need to make an informed choice a little later.
Putting the issue of choice aside for a moment, the concept of direct electronic referrals and booking of appointments over the internet seems a sensible way forward, but do GPs have the time? It's hard enough to get to see your doctor these days without the need to allocate extra time to discuss options and make bookings with as many as 200,000 patients a week.
And, assuming GPs manage to fit the extra work in, can the NHS IT system perform seamlessly? Because it is going to need to if Choose and Book is to be embraced by the profession? GP Paul Cundy again.
CUNDY
Up until now it's been handled in the most inept way possible. Every single elephant trap that we have from our history of IT implementation in the NHS was dug and subsequently fallen into. It eventually came that they unveiled a system to us early this year where it should have made 208,000 bookings, it had actually made 63 - that's 63.0 bookings. And the reason - and everyone put their hands up and said surprise, surprise, why is that? Because it was completely and utterly useless, it was unworkable in my working environment. This was a system which would take about 5-10 minutes to navigate, during a consultation, which is only 5 or 10 minutes long in the first place.
WARNER
I acknowledge it will be an extra task for the GP practice to actually handle.
PORTER
Are you confident that the technology involved in the electronic booking side is going to work well? At my own practice we know we don't have compatible software at the moment, we haven't had an official induction to Choose and Book - the doctors or the receptionist in our practice - and there is only roughly 16 weeks to go.
WARNER
I'm pretty confident about the technology - I mean I'm touching wood and crossing fingers as I give this answer but we do have live sites with Choose and Book at the moment, so we do know that the technology works.
ACTUALITY - DR MILLER'S SURGERY
We'll just wait a couple of minutes while the computer searches.
MILLER
Obviously as the system is starting up there are times when it can be slower, when the resources are being used by other people in other parts of the country, and you never know whether it's going to be a busy time or a quiet time, so sometimes it can be a little bit frustrating if there's delays in the system.
MILLER
There we go and we're off and nothing is happening. No I'll have to go through this again.
PORTER
Dr Stephen Miller encountering a few teething problems.
But the appointment doesn't have to be made there and then. There are other options.
WARNER
What we've tried to do is have a range of systems for actually making the booking, I mean it doesn't all have to be done by the GP, I mean we can use the other staff in the GP practice, there will be some people who will be happy to use the internet system at home to actually make the bookings or a telephone appointments line. So there's a degree of flexibility.
JAMES
In the future what's going to happen is once the GP has decided that the patient needs a referral they'll be given a booking reference number and they will be told some numbers to ring to actually make the appointment. Now my concern is that that's fine if you've got somebody who knows their round the system and feels confident about that but somebody who's not got English as their first language or who is a little bit confused or elderly at the moment the decisions are taken out of their hands and they are looked after, if you like. This new arrangement certainly puts power in the hands of the patients but it makes it much more difficult to make sure that the patient actually follows through with what the GP wants them to do.
ACTUALITY - DR MILLER'S SURGERY
There we go. And that's it. So your appointment's ready for you to go away and choose. So just ring that number, quote your reference number, give them the password of birthday and you'll be able to book your appointment.
PATIENT
Thank you very much doctor.
DR MILLER
Alright? Good, well let's hope it works alright.
PATIENT
Thank you.
DR MILLER
Alright, take care then.
PATIENT
Thank you, bye, bye.
DR MILLER
Bye, bye.
PORTER
One of GP Stephen Miller's patients leaving with a number of different appointment options which she can mull over at home with her diary before contacting the booking service to confirm one of them - assuming she can remember her password.
Now back to the thorny subject of informed choice - how can you find out if your hospital and specialist are up to scratch?
Robert Cleary is from the Healthcare Commission and one of the team responsible for coming up with a new system for assessing if hospitals are any good. It comes into effect next year and replaces the current star ratings - where zero is awful and 3 stars are excellent. So how will the new system differ?
CLEARY
We're going to be taking into account things like do hospitals have systems in place to learn when mistakes have been made? Are they using all the advice that comes their way about what treatments work and what don't? Are they sure that they're treating people with dignity and respect? So it's really going from a small range of indicators to a really very large range of considerations.
PORTER
So how are these hospitals going to be assessed in these various criteria?
CLEARY
The starting point is that the hospital will need to make a declaration - and that's a public declaration, we want it to be to the local community as well as to the Healthcare Commission - about to what extent is it meeting all these standards. Now we need to build in some checks and balances, to make sure that that declaration is open and honest.
PORTER
But essentially they're marking themselves, submitting their mark sheet to you, how do you know, short of doing a full inspection at a hospital, that they're telling the truth?
CLEARY
Well in a particular area, for instance if a hospital is telling us that yes it is learning from its mistakes, if they're doing everything that they can to learn from mistakes we would expect to see a certain level of reporting there. If we don't that gives us a trigger, if you like, to go back and explore that discrepancy with the hospital.
PORTER
And if my local hospital doesn't come up to scratch and scores just a could do better score what happens to them?
CLEARY
Our assessment managers will want to be clear that the hospital itself is taking steps. If it becomes clear that that hospital isn't in a position to correct those matters there's an opportunity for us to escalate and there might be an investigation. Flowing from that ultimately is a report to the Secretary of State for Health but that's at the end of a long chain of interventions that are intended to be helpful to the service.
PORTER
But will the new rating system really influence patient choice or is the public likely to base their selection on more tangible criteria? Sue James again:
JAMES
If you know that the hospital in your local town has say a six month wait for hip replacements, whereas the hospital in the next town has a five month wait or a two month wait, then those are the sorts of things that may colour their general view but I'm not sure that it's going to be as useful as perhaps a discussion with their GP about what he or she knows about the clinicians in the hospital, really is about how convenient the hospital is, I would want to talk to people that I've known who've used the hospital to find out how friendly the staff are, how accessible the service is, when you go on to a ward how are you greeted on the ward, are people interested in you, do they take a particular interest in you as a person rather than the hernia in bed six or whatever. So all of that human stuff is really important I think in terms of making the choice. But of course making a choice about the actual specialist is more complicated and there are a range of ways you can do that - you can either look at the websites and try and get a sense of the types of surgery that are being done by these specialists, but probably the most sensible way is to talk to your GP because he or she will have much better information about the sorts of referrals they make to specialists and what the sorts of outcomes are.
PORTER
So what you're saying Sue is that really despite these - well the current star rating system and indeed the new rating systems we're going to have - people are using criteria that they've been judging hospitals and doctors on for ages?
JAMES
I think that's probably fair yes, I think that at the end of the day the systems we're looking at for the future are pretty complex, they are actually about judging the whole hospital system - not the individual patient experience. So it's a very different sort of set of judgements. And at the end of the day I think you need to trust what your friends and family are saying, what your own personal experience is and what your GP would suggest.
PORTER
Sue James. Well one area where choice can make a huge difference is the second opinion. As we heard at the start of the programme, seeking another specialist's advice and the resulting radical surgery to remove a pancreatic tumour, probably saved Geoff Dodds's life. Here's another example from one of our listeners on how a second opinion can significantly change the outcome.
PATIENT
I first knew that I had a problem I would say by the age of about 14, 15 and it was with excessive sweating. Not a particularly feminine thing to have, so it was very embarrassing as well as being extremely frustrating. And I was amazed even going swimming I'd get out of the swimming pool, try and dry myself and I just couldn't get dry because I was sweating so much. And I knew that it wasn't normal for this to be happening. So I went to see my GP and he really didn't seem very interested at all. I was pretty much pushed out the door and told everybody perspires, it's nothing abnormal, it's quite normal especially for an adolescent and that I would grow out of it.
After a few months I was getting quite distressed, it was the summer time, and it really was getting worse. I would hold my hands up and the perspiration would just be running down my hand. I had the same problem with my feet and it was also running down my torso. I went back to the doctor again and again I was told no it's quite normal and I just wasn't happy, I knew that there was something else that needed to be done, I can't be the only person who suffers like this. And I really was at the end of my tether. By a couple of months later I went back and I asked to see another doctor. They weren't happy because it wasn't my GP, explaining to them then that I'd seen my GP twice and I wasn't happy with the diagnosis, I wasn't convinced that there was nothing wrong with me. Although at the same time I was beginning to think am I imagining this. So I really did push to see another GP at the surgery, which they did allow me to do, although I did have to wait. When I went to see this other GP, a few weeks later, almost immediately she knew what was wrong. Fortunately, she had heard of a condition called hyperhidrosis, so she was then able to send me to a consultant who was able to look at my condition more closely and I could talk to him about it. Going to see the consultant was one of the best days of my life I think, finally realising that I wasn't imagining that this condition, hyperhidrosis, was all in my head and that it did exist and something could be done about it.
The surgery itself, because my case was quite severe, so keyhole surgery - going into the chest cavity on either side, deflating the lungs and then burning away the nerve endings that control the sweat glands down to the hands. After the operation I was in quite a lot of discomfort for a good couple of weeks. However, I had dry hands.
PORTER
A listener whose persistence paid off.
Mayur Lakhuni is a GP and Chairman of the Royal College of General Practitioners.
LAKHUNI
Patients do find it hard to ask for a second opinion. Quite often they're upset about the doctor or the consultant will be offended. But I want patients to know that actually it is a professional code of conduct, most doctors will not be upset if you mention a second opinion. Hopefully you have a good relationship with your general practitioner, have a discussion, be open about your concerns, your fears and what you're expecting from a second opinion. Even if the GP does not agree that a second opinion is appropriate I would say that in most cases a referral will still be made.
PORTER
And opinions do often differ don't they, medicine is not always an exact science.
LAKHUNI
Exactly, I think it's very important to get that point across. It's sometimes hard to secure a diagnosis, when you've secured a diagnosis sometimes the treatment choices are very complex. Patients obviously are very well informed these days by and large, they're much more assertive, they want a say in decisions about their care, they want to discuss it sometimes with another specialist. This is normally seen as a positive thing. I think the difficulty arises when the patient has seen many specialists and is still requesting further referrals - that can cause conflict in the doctor/patient relationship.
PORTER
That's an interesting point because in my experience from patients' requests for second opinions that's probably the most common scenario - is that somebody who's gone from specialist to specialist and not got the answer that they're looking for, maybe because that answer doesn't exist - is that your experience?
LAKHUNI
I think it's not an uncommon situation and I think it's an important job of a GP to protect patients from over-investigation. And something about managing expectations of the referral - why are we referring this patient to hospital? What are we hoping to get from it? And I always like to get that clear with patients - never mind for second opinions but for all referrals.
PORTER
But that said I'm sure in your practice you've come across cases where people have asked for a second opinion, they've got a second opinion and that second opinion has significantly changed their management.
LAKHUNI
I know of cases like this where further referral has made a difference.
PORTER
Something that happened to another Case Notes listener.
PATIENT
When I was about 32 I decided I wanted to have kids and so we went about the usual way of trying to have kids and nothing happened. And nothing happened continuously and I started going to see infertility people and talking about it. And it was noticed that I had fibroids in my womb or around my womb and they seemed to be quite big and they sounded horrifically big to me and people kept talking about grapefruits and I think there were five of them. But at no point did anybody say oh actually these fibroids might be getting in the way of you getting pregnant. They just said - you've got fibroids but there's no reason why you shouldn't be pregnant. And so it didn't even occur to me that they were a problem. And it was only when I was 36, so I'd been trying for four years to have children and nothing had happened, that I spoke to a friend and she said - hang on a minute, why don't you go and get a second opinion, can it really be that these fibroids are stopping you having kids? And it was only then that I actually thought oh year okay maybe I'll go and ask someone else. And so I did. And sure enough he said yeah it could well be that these fibroids are stopping you having children. Booked me in for the op to have them removed. That was in the August and by November I was pregnant. I've since had another child. I just sort of sat there and listened to what they said to me and believed it as the truth and it never occurred to me that it might be an opinion, obviously an expert opinion, but just an opinion.
LAKHUNI
I think clinically we must always be thinking could this be something else, am I missing something here, have we covered everything? And that's a very important role of the general practitioner, the general practitioner has an over-view of the patient's condition. A patient may be under dozens of specialists but only the GP will have oversight. Which is why I think the facility for a second opinion is important.
PORTER
But if a patient feels that they would like a second opinion they shouldn't worry about raising the issue with their GP?
LAKHUNI
Patients should not worry about raising the issue with their GP. I daresay it's not easy for every general practitioner but I want patients to know that one of our key roles is to explore patients' concerns.
PORTER
Dr Mayhur Lakhuni. I'm afraid that's all we have time for. There is a Choose and Book website explaining how the system works and you can access it via the link on the Case Notes page of bbc.co.uk/radio4 - where you can also listen to the programme again. Or, as always, you can call the Radio 4 Action Line on 0800 044 044.
Next week's programme is on heart disease - does an aspirin a day really keep the doctor away - who should, and who should not take a daily low dose aspirin?
And a look at a new way of treating heart attack - forget the drugs, get the patient into theatre immediately. How surgery is the new medicine in cardiology.
ENDS
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