Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 400-419)

TUESDAY 4 FEBRUARY 2003

MRS JANE HOWARD, PROFESSOR PAUL LITTLE, MRS CHRISTINE PERRY AND MRS GINI WILLIAMS

  400. I am imagining a system which incorporated NHS Direct and all of these sources to give you one unified feedback.
  (Professor Little) Some form of feedback with that information would be quite useful.

Chairman

  401. We are beginning to identify the question of feedback and the lack of it. I think you have commented about the willingness of people to report in the first place. There is very little feedback. Is that a feeling amongst GPs?
  (Professor Little) I think there is a real problem. Over the years different governments have asked GPs to collect all sorts of information which GPs do not see the point of and have jumped through the hoops with very little relish and have really undermined faith in the advice given by our political masters. GPs need to know that there is a problem and this is why we need you to do it. There needs to be a clear rationale rather than the GPs being treated as data collection fodder.

Baroness Finlay of Llandaff

  402. We have spoken about getting the data and I wonder how you feel we could balance the tension between asking clinicians not to overburden laboratories by sending in unnecessary samples and to treat certain infections syndromically, with the need to have up-to-date, representative surveillance data. Quite apart from the asymptomatic issues there are the ones that present one way and are bringing up resistance.
  (Mrs Perry) I think you need clear protocols for specimen collection so that you are obtaining the good quality sample in the first place. There is a distinct lack of evidence to support our specimen taking. A project that was commenced by one of our regional infection control groups was to come up with guidelines for specimen collection and the evidence just was not available. I think there needs to be research done to focus on the appropriateness of specimen collection. There is very little evidence to support the actual collection methods that we use. I think that is the first area to start on, to get the evidence to back it up. Then to give the clear definitions where you can identify conditions syndromically leading on to where you do take the diagnosis further with the microbiological details.

  403. Professor Little, you are at the sharp end of collecting.
  (Professor Little) As you have probably all guessed from the way I have answered so far, I do not think there is any great reason to change syndromic treatment of infection. I do not think we should dramatically change that. On the other hand, as you say, there clearly is a need for public health information. Antibiotic resistance is hugely important and we need to have some information at a national level as to how important this is. You could do that by intermittent sampling from practices once every couple of months. They could ask for not just the clinical forms but also urine samples, throat swabs or whatever. You could devise a system of intermittent sampling which is on a representative basis so that it could be monitored at a public health level what is going on. I think that kind of information at a very routine level would not be particularly useful for most practices, so I think the tension is, "What do you want this information for?" This is a huge public health issue; we need to have information about this so we will target our sampling at an intermittent level so that we can get clearer idea of trends but by and large we encourage syndromic management of infections backed by surveillance which suggests whether there is an outbreak of something and targeted sampling in those cases. That is how I see it, trying to manage that tension.

Lord Oxburgh

  404. If something totally new, like West-Nile virus, showed up, how prepared would you or the system be?
  (Mrs Howard) From a public health perspective working with a CCDC team the answer is that we are very aware of the necessity to have plans in place to deal with unusual infections. We are very aware that we can access the information from the Public Health Service website, the CCDC website, et cetera and the microbiologists in the Public Health Laboratories are very aware of the need to be looking at trends and unusual specimens that are coming in and to be asking questions. We are very aware that this type of new infections could be an issue and a lot our planning and a lot of the conversations we are having with the PCTs is about how we would manage these types of incidents.

Chairman: I think the Public Health Laboratory Service would pick up West-Nile virus, but so often these things start in the consulting room or at the bedside. Is there a system that you could see being put in place which would alert you to things such as West-Nile virus coming in when the mosquito activity starts again, just to alert you to the fact that the thing does exist rather than just say that the Public Health Laboratory would pick it up. The initial step, of course, is at the physicians.

Lord Oxburgh

  405. How long would it take to get a response from the PHLS from samples?
  (Mrs Howard) I am talking about the local public health laboratory. There are also the conversations that the clinicians and the microbiologists have looking at the clinical picture that a patient is presenting and what the laboratory is actually showing. I am not suggesting that it is perfect and probably it is increasing the index of suspicion that is perhaps what is needed. There are those conversations that go on and then there is the close working relationship between the microbiology laboratory and the public health teams and the CCDC teams as well which, very locally, are key issues.

Lord Patel

  406. Do we have examples of infections like West-Nile coming in that were picked up very quickly? That would be the test of the system.
  (Mrs Howard) I am sorry, I cannot answer that.

Baroness Finlay of Llandaff

  407. I want to go a little further with the accurate diagnosing of infections. One of the dangers of treating syndromically is that there is a presumption that this is a bacterial infection that will respond to routine antibiotics and not picking up viral components or other types of micro-organisms. A group of infections which I worry are tremendously ignored are fungal infections in people who are ill with other things; they are so difficult to diagnose. I wonder what you feel is the level of knowledge amongst primary care out there in terms of the trigger at which you stop treating syndromically—by ringing the changes on yet another type of antibiotic—and you say that there is something odd here and you need to send the right type of samples, and the level of knowledge of the right type of samples to send off.
  (Professor Little) There is not very much information for most GPs. I think the whole issue is the index of suspicion. There would hopefully be some information either from syndromic reporting or from other sources that West-Nile was going to hit or whatever. I think the issue of odd infections that are not responding is a matter of index of suspicion and guidelines to GP's about when it is appropriate to do samples and what samples to do. The level of knowledge about that is very low. We would need advice—GPs and perhaps nurses—about what samples to take and when.
  (Mrs Williams) This is particularly acute in TB and the outbreaks we have seen over the last couple of years have been due to cases being missed at an earlier stage and being identified as something else like asthma or a chest infection. We constantly see patients in clinics who have had a chest infection for weeks—if not months—and had their antibiotics changed and changed again. The problem with TB is that you do have antibiotics such as clarithromycin and ciprofloxacin which will actually treat the symptoms for a short time so people will see a slight improvement and then they will get sick again. You go through this kind of cycle. In some parts of London there has been some effort to work with the GPs providing small laminate cards that they can put on the desk with the main TB symptoms and who to contact locally. Usually we want GPs to directly refer into a service which can respond very quickly and take on those initial diagnostic tests anyway. If you have GPs starting to wonder whether they need to x-ray, do they need to send off sputum, do I need to do this, it just delays the diagnostic process further. Ideally you want a very close relationship with the TB team and the GP and then a constant updating via the PCT Professional Development Committee. There are mechanisms that we can use to improve this, but it is about index of suspicion, certainly with something like TB.

  408. In GP training schemes how sophisticated is training on infections?
  (Professor Little) Very unsophisticated; there is very little training at all. I am often asked to speak at our local course but they want to hear about the very common things which are equally difficult to manage. I doubt whether there is very much training at all about the management of rare infections.
  (Mrs Howard) I would like to mention the Public Health Link System whereby if a case of West-Nile fever was diagnosed in England then the information would come down via the Public Health Link System to the Public Health Department and when we are on call we carry bleeps. When they go off we ask if it is an urgent cascade or can it wait 24 hours or what. If it is an urgent cascade then within a 24 hour period we actually dispatch the information out to general practice. We did that recently with the ricin scare; that is how the information went out. We use the same technique if there are issues around serious infection in particular areas. We are guided by what comes down as to how quickly we need to respond.

Baroness Walmsley

  409. What is the role of nurses in surveillance and control of infection and how might that change as a consequence of the extended role of nurses? You might like, in your answer, to be quite specific about different nurses and different settings as the answer may be different.
  (Mrs Perry) As you pointed out, there are different roles within this. I very much see the role of the infection control and the communicable disease nurses in surveillance in facilitating this, supporting the clinical teams in providing the data. The role would be analysis and interpretation supporting action and response to the surveillance information that we have available. With the extending role of the nurse there may be a role for nurse epidemiologists as there are in the United States who concentrate very much on surveillance data, getting the correct data, interpreting the analysis, et cetera. I am a very firm believer—as are the majority of my colleagues in infection control and communicable disease nurses—that prevention of infection should be owned by the people at clinical level with the advice and support from specialists such as ourselves in protocols and determining actions that should be taken. The role of the nurses who are carrying out clinical practice is to be aware of predominant infections and have good infection control practice throughout all levels of their practice. I do think there is a role looking at the extended practice in other areas, for example in emergency departments of nurse practitioners, in the diagnosis of infections. Janet Howard has mentioned previously about the changes needed for notification where, at the moment, the formal method is by medical staff. I firmly believe that we have to move that forward so that nursing staff are able to formally notify infections.
  (Mrs Williams) I would like to give an example of the TB situation. I strongly echo the need for nurses to be able to formally notify. Essentially in TB most of the notification is done by nurses already. Because of the nature of the TB case load there is a lot of flexibility needed to make services accessible and as acceptable as possible to patients. This needs a lot of flexibility so that patients have a lot of different ports of entry into the service and also have a lot of choice about how their care can be managed and also what access they have to other services. There needs to be a lot of individual tailoring of care to each individual patient. Mostly TB patients are not very sick. Some of them are very sick initially; if you find them early enough they are not necessarily very sick. They have a lot of other problems that need to be dealt with which are a much higher priority to them than their tuberculosis. We think it would be terrible to have TB. If we were diagnosed with TB we would take our six months of treatment; that would be the most important thing, to get rid of our TB and move on. Whereas for a lot of people who do not have adequate housing, have a lot of issues that go along with seeking asylum in this country, have stress at work, marital problems, whatever, there are a lot of chaotic things that are going on in people's lives with TB and in a six month period that can change as well. Priorities change. It is very important to be very patient focussed with patients with TB and, I think, with other infectious diseases, particularly sexually transmitted diseases. There is a lot of scope for nurse led services and there are some very good models of nurse led TB services particularly in London. Firstly they can enable rapid diagnosis if the nursing services take direct referral from patients themselves, GPs and other specialities. They also have the flexibility of being able to work across the hospital and the community. This works very well in places where it does work (if that makes sense), but in places where there are barriers between organisations this can really cause great difficulties for nurses trying to offer these types of holistic services. Thirdly they can reduce consultant waiting time. If a patient is asked to come back every month for a consultant appointment, that means they are taking a whole morning out of their lives to come and sit in a waiting room to see a consultant for ten minutes, when really they only need expert clinical care probably on diagnosis, on the change of treatment at two months and at the end of treatment to assess their clinical cure. In between that time they could be perfectly well supported by specialist nurses and they may be seen at least monthly or more frequently—up to daily in some cases—entirely dependent upon that patient's circumstances. I think there is a lot of scope for nurse led services. I think nurses are pivotal for patients in order to be able to tailor the different types of care the patient needs. They have access to other community agencies such as housing and social services, welfare advice. We need to draw on those and create a network of services to be able to support patients in the community and to keep them on treatment.
  (Mrs Howard) I want to make the comment that often the data collection is seen as being the end product but it needs to be seen as a means to an end. I think the development of the role of the nurse—particularly a nurse epidemiologist—who is then going to action as a result of the findings is key to this because the background to the professional development of the nurse gives them a very clear insight to how the community works, and it is a different type of training and brings a different perspective than a medical training would bring. There are two issues here, though. The pre-registration training for nursing does not concentrate on these issues very well. Post-registration training and the specialist nursing courses also tend not to give good in-depth understanding of how you can use data and surveillance, et cetera. Critical analysis skills are not good within post-registration training for nurses; it is a gap. Then there is the other issue that nurses, even those working at quite a senior levels, do not quite understand what their public health role is within their overall role. There is still a view that perhaps public health is something that is done in a public health department rather than overall. I think these are issues that need clarifying so that we can make better use of these expert nursing roles and senior nursing roles as well within this context.

  410. Professor Little, do you have any comment about nurses working in general practice?
  (Professor Little) There is no doubt about it, nurses have hugely extended roles now in the management of acute infections particularly. Our practice has a triage nurse; she takes the phone calls; she sees patients. Their training is perhaps just as limited as a GP's in terms of the index of suspicion of something unusual going on. Nurses have to be integrated into the system of training and feedback of surveillance and targeting of sampling just like the GP's do. I think they are absolutely key.

Baroness Warwick of Undercliffe

  411. Given the extended role that Mrs Williams was talking about—which was really quite a comprehensive role—that would mean liaison and co-ordination with a very large number of professionals, assuming that that was introduced—or in certain areas is being introduced—into training, are there any barriers subsequently to fulfilling that role? What are the expectations of other professionals in the field as to what those nurses might be able to do?
  (Mrs Williams) It varies. You can see it across London. One of the big problems in TB is that there are very different models of service in different parts of the city. Also it often depends on the personalities of the people involved in the local area. In some cases what happens is that the nurse-led service gets developed in parallel to what is offered by the medical team. In other areas there is very good partnership and team work and very good acceptance of those different roles. I think it was mentioned earlier that the important thing is that people bring different expertise and different types of approaches and they all have something valid to offer. It is really the flexibility that is added by having nurse leadership, but it does create quite a lot of difficulties in some areas because of the ownership of certain tasks.
  (Mrs Howard) I think this acceptance of the extended role for nursing is a very important point. Ultimately the crux of the matter is accountability. There have to be very clear lines of accountability within these very multi-disciplinary teams that a nurse may be leading or may be liaising with. These accountabilities as such have not quite been bottomed out so there are difficulties and, exactly as my colleague said, it is mixed. But I think it is coming and it has been thought about very carefully in the context of the Health Protection Agency about the role that we will have there. One of the key things, as I say, is accountability.

Lord Rea

  412. What is the role of the GP and the nurse in communicating with the public about infectious disease issues and what training do they receive, both about the nature of infectious diseases and vaccination and about communicating risk?
  (Mrs Williams) In terms of tuberculosis the nurse often works across acute and community settings. They have a very important role in updating their colleagues, updating people in general practice about TB and the risks involved. I think it is very important for the nurses to be linked in with the local health promotion departments and work with them so that they do not try to do it all themselves but they are linked in with the expertise that is available locally and make sure that TB does become part of the local health promotion activity. There is a whole different range of aspects that they can be involved in but it is also about mobilising resources available locally such as health promotion departments.
  (Mrs Howard) I think they have a very important role but I also think there are a lot of barriers. Pre- and post- registration nursing training—which I have already mentioned—is very poor in terms of information on basic microbiology, basic immunology and therefore the underpinning knowledge tends not to be there. That is a barrier to communicating risk if you do not actually understand the principles. Time is another issue. Time is at a premium. For practice nurses with huge immunisation clinics time is needed if they have a mother who requires information about immunisation. From experience at work, the information flow systems within general practice and within the primary care trust are poor therefore the people who need the information that we are trying to get out to them does not always get there. There is very little understanding—certainly amongst nurses that I work with—about the psychological emphasis that is placed on the anti sites that you find on the Internet and the way they actually work the public, if you see what I mean. They do not understand that so how can they counteract the arguments. Generally speaking, training in vaccination and immunisation for nurses is very poor. Even health visitors who obtain consent do not have specific modules on this within their training.
  (Mrs Perry) I echo what Janet Howard has said which links across to the acute sector as well. The lack of training—both pre- and post-registration—for nurses does impact on them being able to carry out their public health function on patients that are in acute care. For example, along the lines of tuberculosis there is still a general fear amongst nurses about the acquisition of these infectious diseases and if they do not have the correct knowledge to protect themselves they will present an image to patients, visitors, relatives that the risk is actually greater than it is. They will enter an isolation room wearing head to toe protective clothing when the need is not there. That presents an image to the public that the risk is actually greater than the existing risk is. There is also a problem of a reliance on experts such as Mrs Williams, myself and Janet, to be able to provide that information. What is actually needed is a level of information to be able to inform patients and relatives at that point in time and not make it seem like this is a greater issue than it is by involving the experts when they are not needed.

Baroness Finlay of Llandaff

  413. Going back to the lack of training in immunisation, is there a place for having an accredited training route that could be provided be something like NHSU—whenever it gets off the ground—so that you would know there was a minimum standard that had been ascertained before people were undertaking some of the schemes. That is one question. Linked into that question, going back to your issue about answerability, accountability or clinical answerability, and whether in secondary care the clinical answerability should be across the disciplines into the speciality teams—such as the tuberculosis team—to the consultant in chest diseases perhaps, the clinician who takes ultimate responsibility rather than up through the nursing management hierarchy to somebody who is not actually involved clinically in that area of work?
  (Mrs Perry) I agree with the need to have accredited programmes so that you have very clearly defined objectives and a base line level of knowledge. We do need to consider different levels of knowledge. For example, the generalist nurse would need to have a very basic background level knowledge about immunology and the role of vaccines in infection prevention, whereas the person who is actually going to give the immunisation would need more detailed knowledge to be able to answer patients' questions about what the general risk is and to be able to identify where they should not be giving vaccines, where people are having reactions to vaccines. I believe there is the need to have standard objectives within those modules so we are very clear that each university is giving the same information to people.

Lord Rea

  414. What is the role of the GP in this? Talking individually to the patients or setting the atmosphere in the primary care unit so that there is a general level of understanding about these issues among the whole team?
  (Professor Little) One of the commonest things we see are acute infections so we are always talking to patients about it. It is usually reassurance that there is nothing horrible going on and hopefully some sensible advice about when patients might need to come back and see us again. I think it is a key part of our role. Management of situations where patients do not want vaccinations—it can be important for the GP and nurse to be able to talk to patients about and explain what the evidence is. Our practice went as far as sending out a leaflet to all patients putting the arguments to and from. Communicating within the team is vital. I think it is important that GPs and nurses sing to the same hymn sheet so that you are not getting dramatically different advice from one GP compared to another. In the best of worlds that would not happen, but it does happen and is clearly an important issue for communicating within the team.
  (Mrs Williams) Just a point about tuberculosis in in-patient settings. There should really be a protocol within the hospital about where TB patients should be placed. If we take the people with pulmonary tuberculosis—being the most infectious and therefore needing isolation—there should be a protocol as to where these patients should be placed. They should be in isolation until active TB has been ruled out. It is a broader issue than having everybody in hospital updated about TB. If you have a clear protocol about where patients go you can then work with that particular staff team making sure they are regularly updated about TB so that you have a very knowledgeable team. That is what I have done in the past in hospitals I have worked with. You have minimal specialist input, but equally every TB nurse would like to see a TB patient as soon as they arrive at the hospital so there is that contact with the ward as well. There are ways to make it more rational and actually deal with those issues with patients in an in-patient setting. In terms of vaccination, I think it is very important that the people who are offering BCG vaccinations do have some knowledge of the disease to be able to answer people's questions about the level of risk. It is quite a tricky subject.
  (Mrs Howard) I would like to see the issue around communicating risk and perceptions of risk extended beyond the medical profession and nursing to other health care professionals and to social service carers and all those that are involved within the care family essentially.

Lord Turnberg

  415. How do you see the new Health Protection Agency helping you with all your work? Does it support you or is it irrelevant in the things you have been talking about? How would it work?
  (Mrs Howard) It is very difficult to know. Everybody is still trying to sort out what they are going to look like and what format they are going to take. One of my main concerns is about the emphasis on data and surveillance and the potential loss of any kind of strategic vision in management of diseases. That is just a concern. The public health departments have tended to be diluted into PCTs. The people at the PHLS have been very focussed on surveillance which has been very useful but not necessarily very strategic.

Baroness Warwick of Undercliffe

  416. We talked about self-help right at the start of our discussions. As general practitioners or indeed nurse practitioners what are the benefits and problems associated with a possible increase in the availability of near-patient testing and over the counter treatments?
  (Professor Little) I think this is the real nub of the issue as a front line GP. In the context of antibiotic resistance which I do believe is a hugely important threat to our nation and to the world, the key issue is: "How can I tell that the patient in front of me is somebody who will benefit from antibiotics or not, or, indeed, benefit from antivirals or not?" That requires a whole series of steps, the information for which we do not have. We need to know whether a near-patient test is valid. Does it predict microbiological or virological diagnosis? Then we need to know, if you use it, what are the implications in terms of predicting benefit. Just because you can predict whether a bug is there does not mean to say that you will necessarily have a huge symptomatic benefit from the patient by targeting antibiotics accordingly. Then there are the downstream implications, that if you have widespread use of near-patient tests does this actually encourage the iceberg effect that I was talking about earlier in that you encourage the idea that you need to see the doctor or nurse in order to do a test. I can talk about the area which I know, which are dipsticks and rapid tests for throats and near-patient testing for flu. Those are the commonest available near-patient testing at the moment. There are major validity issues there. Then there is the issue of whether a near-patient test perform any better than clinical targeting. Those are issues on the research agenda that urgently need to be sorted out that nobody is really sorting out at the moment. We are doing a study at the moment on the use of dipsticks and it looks like, for example, the severity of symptoms might be combined with looking at whether the urine is clear or not which may do just as well as a dipstick, or almost as well. If these provisional findings are confirmed then it would be much better to use a clinical scoring system rather than use a dipstick—with all the potential problems. My feeling would be that we really need to sort this problem out in order for the key question about targeting of treatment to be sorted out in general practice. There is a whole series of issues. It is not just about the management of self-limiting illness. You want to identify people who will benefit symptomatically; you do not want people to be denied if they have very severe symptoms. It is also about who is at risk of complications and who is not. We do not have that information. There is a really clear research agenda that needs to be worked on.

  417. Has it not been tackled by anybody at the moment?
  (Professor Little) We are doing a study on dipsticks. I have put in a proposal to the MRC to look at the implications of a rapid throat test as part of other things developing a clinical score to see whether either a clinical score or a rapid throat test actually does predict benefit from antibiotics. There is clearly a research agenda round these things. Whether I can persuade the MRC that that is more important than other things remains to be seen. It is very difficult to get funding out of anybody at the moment. The MRC is particularly stuck for cash. The NHSR and regional system which used to be a very promising source of funding for pilot studies and small trials has gone now. It is very difficult to get funds. There is not an identified funding stream for infectious diseases research. It is very difficult to get funds for this really basic research. It is not that much money compared to the size of the problem and the number of people who are managed every day. It really is a priority that needs addressing.
  (Mrs Howard) I want to say one thing about over the counter treatments. Unless we include pharmacies within the syndromic selection data or even surveillance then we are going to miss huge pockets of information.
  (Mrs Perry) In relation to near-patient testing and the quality of testing, bearing in mind that in the laboratory settings we have very good quality control systems to ensure that we are maintaining high standards and reporting appropriately, with near-patient testing it is important that those kind of quality control systems are in place as well to make sure that we do have some kind of accuracy and control over the results.

Lord Oxburgh

  418. I think we turn to IT now. It is clear, I think, that at least part of the strategy for dealing with infectious disease depends on the collection and management, presentation and transmission of information fairly rapidly. IT is clearly key to this. How do you feel in your separate experiences that the IT systems are coping at the moment? To what extent do they fall short of what you think are legitimate expectations?
  (Professor Little) We are at the start of being able—much more effectively—to use IT and I think NHS Direct is a really important step. If that is integrated and cascaded down through appropriate IT systems it would be great. We clearly need somebody at the other end making a judgment about what information is important and what represents a significant outbreak. I think I have indicated earlier that I think there could be greater use of existing routine consultation data collected in general practices every day; that could be anonymised, downloaded and fed into the system. We are now in a generation where most practices have computers. Some have links; those links could be better utilised. The rapid feeding back of clinical results is an example. Our practice has a link system but a lot of practices do not. If you are stuck managing a patient you want a rapid feedback of what organism is there, preferably you want some advice about whether you need to do any other sampling (for example in the case of severe fungal infection or potential fungal infection), some little comment from the lab. The use of rapid feedback of results, the use of rapid feedback of information about local problems.

  419. What does rapid mean in that context?
  (Professor Little) I do not see why you should not actually have information within 24 hours about a local problem.


 
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