I invite our witnesses to take their seats and welcome them to the first evidence session examining the report of the Auditor General for Scotland on bowel cancer services. Today, we shall focus on the way in which services are redesigned and on how new ways of working are being planned and introduced.
With your permission, convener, I would like to make a few preliminary comments. First, I welcome the report, which deals with a complex subject and one that is not often talked about in public. For most people, the subject of bowel cancer is embarrassing. The symptoms of bowel cancer are not the sort of thing that people find easy to talk about, but raising awareness of bowel cancer and its symptoms is an important goal. In Scotland, the incidence of bowel cancer is rising for both men and women, and one of the most important things that we can do is raise awareness of the symptoms and ensure that people are put in touch with services quickly, as early detection of bowel cancer is an important factor in long-term outcome. It is important that the committee should discuss this valuable report. I would like to take this opportunity to emphasise the theme of early detection, to encourage wider awareness of the symptoms of bowel cancer and to encourage people to seek medical help and advice as soon as they sense that there may be a condition that needs to be investigated.
We intend to ask questions on four areas today, with different members leading the questioning on cost and performance information; driving change; capacity planning; and quality of care. I will lead on cost and performance information.
I think that the work to which you are referring is a study that was undertaken by a member of staff in ISD Scotland, which tried to estimate the overall cost of cancer services. The figure that the study came up with was around £450 million a year. Technically, this approach is known as programme budgeting and is usually discussed in the context of both assessing the total cost of spend and considering a complementary analysis known as marginal analysis, which is, "If you spend this amount now, what would you spend your next pound on? Where would you get the biggest effect?" At the bottom of this question, I think, is concern about programme budgeting and marginal analysis.
To clarify, might bowel cancer screening, which you gave as an example, be included as a way of monitoring the success of the programme?
Yes.
There is a continuing debate on the value of targeting in the NHS. "Cancer in Scotland: Action for Change" sets a clear strategic direction but has few specific targets for improvement and does not include measures to assess the effectiveness of service changes. Possible targets include survival rates, waiting times, equity of access and patient satisfaction. What is the department's current view on employing more targets?
I will make one preliminary point. I agree that more intermediate targets might be helpful, but one important target that the Auditor General's report does not mention is our overall target of reducing cancer mortality in the under-75s in Scotland by 20 per cent by 2010. I am pleased to say that we are on target to achieve that reduction—by 2003, we had achieved a reduction of 13.6 per cent. That is an important measure of whether our overall cancer programmes are headed where we would like them to be.
Staying with targets for the moment, I refer you to paragraph 156 and exhibit 23 on pages 38 and 39 of the Auditor General's report. Data on waiting times are collected by regional cancer advisory groups and are reported to ISD Scotland. The data show that if current trends continue, the waiting time target of two months from urgent referral to treatment will not be met for all bowel cancer patients. Interestingly, that information is not yet published, in contrast to other waiting time information, which is published quarterly. What can you tell the committee about addressing the worrying possibility that that target will not be met, and making the information more readily available?
We have set a challenging target, and it is right that we should do so. It will be difficult to meet, but we remain committed to it and we will do our utmost to achieve it, which is why I was at pains to point out the work that we are doing around the waiting time action plan that we will discuss with the NHS shortly.
I would like to clarify your answer to my first question. You talked about the key issue being the best use of additional resources. What about the best use of the current resources or the majority of the resources? How does the department hope to address that in the sense of value for money?
I return to my point about the tariff, which will give us a means of examining the cost effectiveness and cost efficiency of resources. One particular area in which we need to make more rapid progress is in relation to fuller use of endoscopy sessions, which are a crucial stage in the investigation and treatment of bowel symptoms. We have some underused capacity in the system. The principal shortcoming is that we need some additional staff. We are taking steps to put in place additional training programmes, which will almost double the number of non-medical endoscopists in Scotland over the next couple of years. That will mean that we will make better use of current capacity and, as a result, will be better value for money.
What is the expected timescale for introducing a tariff system, and what is the expected timescale for you and the management of the NHS and for Audit Scotland to receive information on value for money outcomes?
We intend to progressively introduce the tariff system over this year and next year. We expect to have information of value by the end of this year.
I have two follow-up questions. On the last point, can you explain how tariffication will work? How do you envisage it better informing you about where extra money should be invested to ensure that you get better value for money in cancer care, particularly bowel cancer services?
Currently, our cost information is at a high level; it is not—to use the jargon—case-mix sensitive. As soon as you present data on anything in the health service, whether on costs or activity, people ask, "Have you adjusted the data to take account of the types of patients that you treat, because they are different from the patients down the road?" The tariff system introduces a common vocabulary to the conversation by using a technique known as health care resource groups. HRGs are widely used internationally; they are accepted as a sensible basis on which to consider variations in case mix. HRGs will allow us to consider how we deploy resources to comparable groups of patients in different places. When you do that, you can consider variation and the appropriate level of spend, which may not be the lowest level, the middle level or the highest level, but it will be somewhere on the spectrum. If data are presented under the tariff system, we will be able to ask the sorts of questions that we have always asked but we will no longer get the answer, "Well, you're not comparing apples with apples because you haven't standardised for the case mix."
In Scotland, health boards are both commissioners and providers; there is no separate commissioning role. How will tariffication actually work?
I think that you are alluding to the fact that, in England, data from HRGs are used as part of the payment-by-results system. That is one use for the data, but we are using them in two different ways: we can analyse data from HRGs at almost any level, for the purposes that I have just described; and we can adjust financial flows across health board boundaries. There are a lot of flows between health boards and, hitherto, they have not been addressed in a way that is case-mix sensitive.
I would like to ask a follow-up question on waiting times. In his report, the Auditor General highlighted four reasons for delays between the initial diagnosis and the start of treatment. Those reasons included
I hope that you will not feel that I am labouring the point, but we think that the answers for each stage of the patient journey are set out in "Top 20 Actions for Change". The booklet is the result of work with patients, the public and clinical teams throughout Scotland. The booklet contains lessons that have been learned, and the waiting time action plan that I referred to is intended to ensure that those lessons are applied throughout Scotland. There are examples of good practice such as referral from primary care and risk stratification. We are determined that good practice from the booklet should be systematically applied. We have to ensure that any blockages are removed.
Members generally do not recall seeing the document that you have shown us. Apart from making it available to committee members for our deliberations, sending it to all members might also be worth while, so that they are aware of the work.
I am happy to do that. I am showing you an expanded version of exhibit 29 in Audit Scotland's report. We have just made the exhibit larger for display in public and included details of some projects that are under way in parts of Scotland.
I agree with the convener that it would be useful to have a copy of the diagram.
We could give a reasonable account of the overall resource that is committed nationally through some of the widely publicised initiatives that we are undertaking, but in general you are right. The same argument applies to what goes on in primary care. How do we attribute a fraction of total activity to individual programmes? Much of our prevention work is aimed at diet and exercise, both of which are important in bowel cancer but are also important in relation to heart disease. The technical problem is how to divide the total spend to show what we spend on activity to prevent bowel cancer rather than heart disease. The Graham study could not do that because the data did not exist.
As you have outlined, identifying which investments specifically target different conditions is complicated. The fear is that if the results of such investments are unclear, we might not be able to justify investment in future. I am interested to know how the service gathers figures to support its arguments for providing such investment in future.
Ultimately, the test is the trajectory of survival rates, which is what really matters.
Rather than survival rates, would not the test be the rate of identification of the disease? For example, as a result of investment in prevention, should the number of people presenting with bowel cancer not drop?
Obviously, preventing the disease from occurring is highly desirable, but if we can detect more cases earlier, that is also highly desirable.
So both measurements are important.
Yes. However, early detection of the disease is particularly important for long-term survival. Therefore, the overall measure of whether our investment in bowel cancer is paying dividends should be survival rates. Our survival rates are going very much in the right direction as a consequence of the actions that have been taken.
One of our difficulties is that we can get lost in the jargon and in the mass of statistics. Unless I picked him up wrongly, Dr Woods said that current performance on waiting times meant that, as at September, 57 per cent of urgent referrals were being seen within two months. That sounds impressive, but given the simple truth that cancer can spread if it is not treated quickly, it is of the utmost importance that diagnostic waiting times are kept to a minimum.
We share the ambition of meeting the overall target that has been set. I will not repeat what I said earlier, but the target is challenging. However, we remain committed to it and we are determined to achieve it.
Without getting into the medical detail, if one is to understand the report, one must understand a little about the problems that the disease presents both to us as clinicians and, in turn, to the Executive. As has been said, bowel cancer is a common cancer. The problem is that, unlike breast cancer patients, who present with only one symptom—a lump—bowel cancer patients present with non-descript, ill-defined symptoms that are very common, such as bleeding from the bowel and changes in bowel habit. According to the study that has just come from Glasgow, that means that of 100 patients who present with symptoms, only three will prove to have the disease. That is our problem in trying to tackle the situation in one big bite. We have an enormous number of patients who do not have the disease—the so-called worried well—who must be processed through the system to identify the 3 per cent who do have the disease.
I ask for additional information on precisely what you have just explained to us. Will you give us a sense of the proportion of people with symptoms who are referred for diagnostic tests? You gave us the percentage of people who are subsequently diagnosed with bowel cancer, but roughly what proportion of them go on to be diagnosed with some other form of bowel disease that requires treatment and intervention, such as diverticulitis?
About 20 per cent, but many of those diseases are relatively trivial.
I understand the complexity of the situation, but I have difficulty when phrases such as trajectory of survival rates are used. What it really boils down to is: do you cure people?
We are confident about where we have been spending the additional money that we have received and we are clear about where we think we should spend more of that money to remove bottlenecks. We are clear about the importance of spending money on bowel cancer screening and we are introducing methods that should enable us to understand better whether we are getting value for money from the existing spend. I hear what you say, but I believe strongly that the introduction of the tariff system will help us to understand rather better the pattern of spend in different parts of NHS Scotland.
I hear the word "should" coming into what you say, but if the systems work, you will know what you are spending money on.
I say "should" only on the basis that we are in the process of introducing the system over the next two years.
We will check against delivery.
I am sure of it.
I ask Margaret Jamieson to take us on to questions about driving change.
A number of my questions are directed to the representative of the centre for change and innovation, so I ask Dr Woods to feel free to butt in if he feels that to be appropriate.
If I may, I will butt in before my colleagues have even spoken. Since I arrived in my post in January, I have been reflecting on how we organise ourselves to support the delivery of key objectives. I do not wish to anticipate where I might ultimately conclude that we should go, but it is increasingly clear that we need to align better on our delivery objectives and on the detailed work that the centre for change and innovation is undertaking. The benefits of doing so become obvious when one considers the work that has been done on bowel cancer screening—we get a focused effort and we can drive the programme throughout Scotland. With that preliminary comment, I invite Mrs Ferguson to say a bit more about the specific programme.
I can speak specifically about the cancer service improvement programme, but not the bowel cancer screening programme—Fergus Millan knows about that.
I am not too bothered who answers, as long as we get an answer.
The early part of the cancer service improvement programme, which started in 2003, was about our team of seven people engaging with staff and helping them to understand the problems and bottlenecks in the system and processes, which are outlined in the Audit Scotland report. Much of the work in the first year was done with clinical teams, although we also actively sought the views of patients and families and fed them back in quickly, instead of waiting months to do so. That was an exciting start to the programme.
Was the work undertaken in isolation from the bowel cancer framework?
No. Obviously, the centre for change and innovation is closely aligned with the Health Department's cancer branch. Mrs Porterfield can say more about the bowel cancer framework, but we are informed about and kept up to date on progress and any implications that there might be for us.
It is important to point out that we are talking about a cancer service improvement programme; it is not limited to bowel cancer, but applies more generally.
Mrs Ferguson has identified a link with Liz Porterfield and her branch, but there are many other branches in the Health Department, as well as colleagues in NHS Quality Improvement Scotland, the regional cancer advisory groups, the health boards and individual hospitals. How can you be sure that they are all following the same model, that you have removed all the barriers—professional or otherwise—and that we, the public, can be confident that whatever hospital or general practice we attend, we are getting best practice?
That is an important question and that is exactly where we are in the programme. Research shows that it can take improvement programmes quite a number of years to achieve sustained change, but we have achieved sustained change in some areas of Scotland during the past year. It is worth while to note that. We need to build on that. It has already been mentioned this morning that we want to roll out the programme and make standard the changes that have worked, in particular the top 20 actions for change.
You indicated that you have evidence that that best practice is absolutely the best in some areas of Scotland. How do you ensure that that best practice is delivered elsewhere?
That is a really important question and I agree that we must get better at ensuring that the solutions to problems that we find in one place are available to and implemented in others. That is the department's performance management function, and that is what I was alluding to when I talked about the need to ensure that we align the objectives that we are pursuing with the work of the CCI within the department and that the intelligence that we get from our performance management processes feeds back as part of the process. As I said, I have been considering that since I arrived because we can do better on some of that than we might have done hitherto.
I take some comfort from that.
I think that you are referring to the diagram at exhibit 7 in the Auditor General's report.
Yes.
I had a look at that so I will venture an explanation. On the face of it, it looks complex but I hope that when I have explained it, it will not appear to be quite so complicated.
It is worth saying a little more on the subject. In 1999, Scotland, like most other countries in Europe, including England and Wales, had very little idea about the specifics of cancer care, especially quality issues. As a result of the 1999 review, the managed clinical network idea was spawned. It was a clever idea that was designed to address your point, which is that to achieve quality throughout Scotland, it is necessary to work across several boards, otherwise each board would get lost in its own agenda and proper comparisons between boards would not be made.
Mr Finlay spoke about working with the CSBS, as it was then. It is important that the managed networks meet the accreditation standards of QIS; as I said in my opening statement, the three regional networks now meet those accreditation standards. That is vital to ensuring the quality of care that patients receive, wherever they are in Scotland.
On that point about quality of care, staff have recently raised concerns about the diagnostic equipment that is used for cancer patients, especially in the west of Scotland. Is that a failure of the membership of the regional cancer advisory groups? Is it down to one group making a decision in isolation from others or is it about planning and procurement procedures that do not include front-line staff?
I take it that you are referring to the scanner in Glasgow royal infirmary.
It was the Western infirmary.
Thank you for correcting me. There are so many scanners that I cannot remember where they all are. You might be interested to know the number of magnetic resonance imaging scanners and computed tomography scanners in Scotland. I have the figure somewhere, so I can tell you later.
I return to the point that I was trying to make, which I obviously did not make very well: staff who are delivering the service have not been fully involved in the decision-making process. I accept the logic that you have just outlined; a decision had to be made that the equipment at Stobhill needed to be replaced much quicker than did the equipment at the Western. The individual who went public was not involved in the round of information and some of us might say that they were shroud waving. We all know that cancer is an emotive subject. Is there an issue about the dissemination of information throughout the area?
I do not want to comment on what the individual concerned may or may not have known when they made their comments, because I am not sure about that. In general it is correct to say that we would expect staff who were working closely with such equipment to be fully involved in a dialogue about its replacement. I expect that that has been the case as capital programmes have been established. I do not know whether Mr Finlay can shed more light on that.
I do not know the detail of the specific case that Margaret Jamieson raises. In general, there is difficulty with huge capital expenditure on the replacement of equipment when it is not specific to cancer but runs across disciplines and hospitals and involves several referral areas. I do not think that I could answer the question with reference to cancer, which is my remit today.
I have been told that my time is up.
It would not be the first time, Margaret.
The report states that
We believe that we need to increase the number of endoscopists to utilise all the slots that we have and to accommodate the expected increase in demand for colonoscopy that will arise from the bowel cancer screening programme. That is why we have put in place plans to review the capacity in endoscopy and the number of people in training. As I mentioned earlier, we expect to announce soon the outcome of consideration of a business case that we have had prepared on the matter. The key components are that, as well as training endoscopists, we need to train trainers and to make provision for additional training of medical staff.
What is the current shortfall in the number of staff?
Perhaps I can express that by saying that we need to increase the number of nurse endoscopists by 25 during the next two years. I think that the current number is 29 with seven in training, so we are planning almost to double the number. That will go a long way towards fully utilising the sessions that we have and it will put us in a good position to cope with the expected increase in demand for colonoscopy that will arise from the bowel cancer screening programme.
Which areas of Scotland are most affected by the shortfall?
A diagram in the Auditor General's report indicates where we have unused capacity. Not everywhere has unused capacity, although I am sure that everywhere would benefit from having additional nurse endoscopists. Where we have sessions that are unused, it would obviously be desirable to bring that capacity into use first.
I am just trying to establish where the shortfalls are.
Exhibits 30, 31 and 32 in the report give the details.
Is anywhere up to full complement?
Yes. I was at Stobhill hospital last week to talk to staff about their bowel cancer services and my understanding is that all their available slots are filled. They would like to increase their number of sessions—that is their biggest problem, rather than a shortage of endoscopists to fill the sessions.
You said that there will soon be a business case on the issue and that you need to train trainers. How soon is soon?
We have just received the business case and we are considering it. If I did say that, I should clarify it by saying that we will soon decide on the outcome, following our consideration.
In England, more than £8 million has been allocated to three regional endoscopy training centres but, apart from a course for nurses at Glasgow Caledonian University, no such training exists in Scotland. How do you plan to meet future need, let alone current need, without such trained staff?
Our plan is, as you say, to increase the amount of training that is undertaken at Glasgow Caledonian University. In addition, we intend to utilise the Cuschieri skills centre in Dundee to provide training for trainers and for doctors. There is a need to be more systematic and to quality assure the training for doctors, and the Cuschieri skills centre will allow us to do that. We will have a centre of training expertise in Dundee and we will have an increased number of students in training at Glasgow Caledonian University.
Mr Finlay mentioned an "overwhelming tide of patients". How will you cope with the results of the bowel cancer screening programme if it is the success that we all hope that it will be? I know that you are discussing the business case. How and when will all the endoscopy training be implemented? You have given us some idea of numbers and location, but what is the timescale?
The increase in the number of people in training will be delivered over 2005-06. I think that there will be an additional intake in January next year to boost the numbers. Of course, the arrangements that are being put in place in Dundee will continue thereafter. In having the business case prepared, we have obviously taken into account what we expect the impact of bowel cancer screening to be on the number of patients who come forward for colonoscopy.
We accept that staff training and the provision of trained staff will be an essential part of tackling the whole problem. I hope that the shortfall will be eliminated as quickly as possible.
That essentially boils down to the way in which services are organised and planned locally. It is usual in our hospitals to have services under the direction of a clinical director, a business manager and people like that. What the Auditor General is referring to in that paragraph is the need to ensure that those functions are discharged effectively. If there is "inflexible skill-mixing", as the report says there is, it may well be that having additional nurse endoscopists will provide additional flexibility. It may also be that we can operate with more flexible working hours in some of these services. Fundamentally, this is about the quality of operational management. We must continue to ensure that we have high-quality operational management that can arrange and deliver services that patients require.
What are you doing now to eliminate poor management, improve leadership skills and ensure that procedures are put in place and followed by front-line staff?
Part of the solution lies in the systematic application of some of the change processes that are described in the report. Our plan on waiting times is very much focused on trying to achieve that. More generally, the minister has announced that we will publish a leadership and management development strategy for NHS Scotland. That is almost complete and it will come out shortly. You are quite right to say that leadership and management of clinical services are extremely important to effective delivery. We have taken the opportunity to work with the service to come forward with some new proposals on that. Those proposals will be on the streets, as they say, before too long.
I point out that it is really a discrepancy between demand and capacity, which is partly to do with our geographical problem of meeting the needs of small communities in distant areas. Although some of the hospitals in exhibit 30 are not working at full capacity and the graph shows apparent capacity, patients would have to travel quite long distances to have a test in those hospitals, so it is not quite as simple as saying that the facility is not being used.
Have you considered how other countries that have public health services address such issues? If so, which countries have you considered?
We are most familiar with the work that has been done on diagnostic services and endoscopy redesign in England. Much of what we are doing parallels the work that is being done in England, which offers the nearest, most useful comparator.
Are the recruitment and retention of key staff a problem?
We have difficulty recruiting in some areas, such as radiography, but in general we are making considerable progress in relation to staffing numbers in bowel cancer services. For instance, although there are vacancies in radiography, there has been an 18 per cent increase in the number of radiographers in Scotland since 1997. This year there will be 100 graduates in the discipline and the number will rise to 139 next year. Since 1997, there has been a 35 per cent increase in oncologists, who are key members of the team, and we will have 19 more oncologists over the next three years. There has been an 18 per cent increase in radiologists since 1997 and we expect 28 radiologists to complete their specialist training during the next three years. In general, those staffing increases will put us in a reasonable position in relation to supply and demand in those specialties.
Are retention and turnover of staff a problem?
Yes, but the modelling that I described factors that in. We anticipate that by 2006-07 many of the disciplines that I mentioned will be broadly in balance in Scotland.
What is the retention problem?
Do you mean the level of retention?
What are the causes of the problem?
They could be many and varied. It could be to do with personal circumstances; someone might want to pursue a career elsewhere. I do not want to speculate much beyond that. Multiple factors affect decisions that people make about pursuing their careers.
The report suggested that the recruitment and retention of key staff are problems. Will the measures that you mentioned address the problems?
They will go a long way towards doing so.
Who is responsible for workforce planning for bowel cancer services?
The responsibility is part of the broader responsibility for workforce planning, which takes place at a variety of levels. Locally, of course, workforce planning is the responsibility of NHS boards, but nationally we take a close interest in the matter and work closely with NHS Education for Scotland, which is responsible for the postgraduate training of doctors and dentists. The Health Department works on workforce planning for nursing. We will soon produce important papers on workforce planning for NHS Scotland; much work has been done under the auspices of our national workforce committee, which leads that work. We should see the fruits of that labour during the summer.
The service has suffered from staffing problems and the lack of training of key staff. There is to be a national bowel cancer screening programme. It is estimated that screening the 50 to 69 age group could save 150 lives each year, which would be great. However, can the system cope with the increased workload?
As I have said, we are actively planning for the implementation of bowel cancer screening. We cannot simply bolt on bowel cancer screening to the existing services; they need to be expanded and developed. That is why we have been looking—in particular, but not only—at the issue of using non-medical endoscopists. It is a critical point in the training pathway. The bowel cancer framework group that we have established within the department has brought together all the interests in the matter to ensure that we have a comprehensive plan that enables us to roll out bowel cancer screening.
I have a couple of brief follow-up questions on the proposed screening programme, on which I would welcome some additional information. There are UK bodies that are charged with looking into screening programmes and the like. Are we in Scotland going in a distinctive direction in this area or at different pace from other parts of the UK, or is this development part of a UK-wide move?
I will invite Mr Millan to speak in a moment. My sense is that we are going in broadly the same direction as the rest of the UK, as what we are doing rests on the same evidence. One would be wary of departing from that. There is some debate about what the age range should be for screening, and I think that we plan to aim it at a wider age range than might be the case elsewhere. However, I am ready to stand corrected.
That is essentially correct. The NHS in England is undertaking its own planning and announced last year that its screening programme will roll out from 2006. It faces the same issues that we face, concerning capacity and how the programme can be built into its existing services. However, it has not yet announced details of the number of screening centres or the age range. As Dr Woods said, we are considering an extended age range. The proposed programme in Scotland is essentially comparable, but we are perhaps in a slightly more advanced position on it than the NHS in England.
Thank you. I have a second point for clarification. Can you give us a sense—even in broad-brush terms—of how the proposed bowel cancer screening programme may compare with other national screening programmes, regarding the outcomes that you expect? You have said that 150 lives might be saved by the proposed screening programme. I know that detailed information is available on that but, broadly, how might that outcome compare with those of screening programmes for breast cancer, cervical cancer, and so on?
From memory, I think that the proposed screening programme will save significantly more lives than the programme for cervical cancer screening. Mr Millan has the data.
The screening programme for breast cancer is expected to save about 40 lives a year, and the screening programme for cervical cancer is expected to save about 26 lives a year.
That is why we think that investing in the proposed bowel cancer screening programme is one of the most important things that we can do.
For clarification, I have a couple of specific questions. How can you ensure that all hospitals in Scotland that will provide bowel cancer services will use risk-based diagnosis measures instead of the clinics' or GPs' own preferences?
That is being discussed by the bowel cancer framework group. I was at its meeting a couple of weeks ago, when that matter was discussed. We have built the need to achieve that into our waiting times action plan for bowel cancer, and we will pursue that with some energy over the next few months.
Thank you. The report suggests that certain terms lack definition, the most important of which are "urgent" and "specialist". What plans are in place to define those two terms precisely, and what criteria will be used to define them?
Urgency is a clinical decision that is made by a general practitioner in the light of the medical history of the patient and the symptoms that they are presenting with. To that extent, urgency is defined by a GP, who comes to a view on a patient. The bowel cancer framework group is working on a referral protocol that will give more detailed guidance to GPs to help them with those difficult decisions. As Mr Finlay said—and I think that it is also in the report—there are a large number of people with symptoms, but only a small number of them will go on to develop bowel cancer. That is why the adoption of risk stratification in primary care and in hospitals, when people get to see a clinical nurse specialist, is important.
We are working hard to produce a robust mechanism for defining urgent and non-urgent patients, bearing in mind the need to treat all patients. For two or three years, guidelines have been in place that define urgent and non-urgent cases. GPs are aware that a third of patients are in the non-urgent group, but because they are the patients' advocates, they quite properly tend to tick the "urgent" box first, especially if waiting times are a bit long. That is understandable. It is what I would want, myself.
We all understand the importance of being labelled as an urgent case, as evidence indicates that there is a clear advantage in a speedy diagnosis because it results in higher survival rates; that is why I am asking the question.
Yes. Clearly, one needs to do all that one can to reduce the number of appointments that people do not attend. The note of caution that you hear in my voice relates to the fact that we need to understand why people did not attend an appointment. It might be that the service has not organised itself as effectively as it might have in terms of making it easy for people to attend or it might be that the patient finds that particular circumstances arise on a particular day. Equally, however, it could be to do with the fact that people do not take the opportunities that are afforded to them. We have to be careful to understand the causes of missed appointments and allow that to guide the actions that we take.
Do you plan to increase the co-ordination between waiting lists in order to reduce the discrepancy in waiting lists? For example, are there any plans to eliminate the procedure of named referrals and replace it with some sort of centrally controlled register of appointments?
Many hospitals are considering a common receipt of referrals. Last week, in Stobhill, I heard about clinical nurse specialists reviewing referrals. That is a useful way of managing referrals as it ensures that patients are differentiated according to urgency and diagnostic modality. Again, we know what we need to do; our task is to ensure that we do it across the piece. However, there will always be reasons why a GP will want to refer a patient to a particular consultant and we need to respect that.
I agree that there has been a move away from named referrals. However, patient choice is important and some patients want to see a particular doctor. That is why we want to ensure that patients continue to have a right to see the doctor of their choice.
Susan Deacon will lead the questions on the quality of care, with a focus on the patient's experience.
As many of the responses that we have heard today have already touched on this area, I will endeavour to go forward, not back, as the saying goes.
Thank you very much. I will attempt to answer that question.
You may plead the fifth amendment.
I turn to the report first. I welcome the report, which is balanced and beautifully written, but I felt that I had been shot with my own gun when I first read it. Back in 1999, nothing was in place. Clinicians worked in isolation and we knew very little about the process. We set up the managed networks, got clinicians to work together across regions, collected the data and got our first data snapshot in 2002, which forms the substance of the report. At that time, we compared our performance against the standards of the Clinical Standards Board for Scotland. The aim of the process was to pick up good quality, which we knew existed in certain areas, so that all hospitals in Scotland would be on a level playing field. Last Friday we reviewed the data on important clinical outcome measures—such as whether a tumour had been completely removed, which is obviously critical to a patient's outcome—and all our networks throughout Scotland now meet those standards. In 2002, however, some of those standards were not met. I think that it is that process of clinicians working together from the bottom up that has driven quality up. That was not to please the Executive—I am not here as an apologist for the Executive—but because everyone wanted to do their best to fight the disease. We have harnessed people's enthusiasm.
I am grateful for your answer, which reinforces my long-held opinion that doctors are more effective politicians than politicians are. Your answer is genuinely informative and terribly diplomatic, which I appreciate. However, I want to press you a little further. You talked about the importance of achieving change from the bottom up and the practical things that make a difference to the patient's experience. I want to return to the range of activities that are taking place.
I could flippantly say, "More of everything", but I will not. I am mindful that the cake is of a certain size and that if colorectal cancer takes more, someone will have to get less. That is always a danger and it is also the danger of targets: we can meet any target by just moving the resources from somewhere else into a target-driven process.
Thank you very much. I am grateful for that answer. If I may, I will maintain the same line of questioning for David Steel. I am conscious that, although the clinical standards board as was, and QIS as is, has been referred to on a number of occasions this morning, we have heard relatively little of your view about how the process of improving the quality of care can be driven forward. You have a number of years' experience under your belt, as does the organisation that you represent. What does that experience tell you about how best this can be done? Reflecting on this morning's discussion, how can the process of improvement be driven forward?
I will follow on from Mr Finlay's comments. Our role—in the past as the clinical standards board, and now as NHS QIS—is to set standards, monitor the performance of the service against those standards and make recommendations in the light of what we find. We then look to NHS boards and, in this case, the networks to implement our recommendations. We do that partly for the reason of ownership that Mr Finlay mentioned. Although some things are done most effectively from the centre, other things are done much better if they are taken forward locally with help from the centre. That is where the centre for change and innovation comes in as well. We also look to the Health Department, through its performance management arrangements, to ensure that that is happening. As the committee heard earlier, boards are accountable to the department and ministers and not to NHS QIS. We have a role in helping with implementation: for example, one part of the organisation is responsible for producing best practice statements. A couple of statements have been produced in relation to different aspects of cancer treatment.
The report identifies that some of your organisation's standards have not kept pace with clinical practice and need to be revised. Can you tell us specifically what stage you are at in doing that and, more generally, how you ensure that the standards that you set do keep pace with change so that the right things are being measured and change is driven in the right direction?
The answer to your specific question is that we have embarked upon the process of updating those standards. We deliberately waited until the Audit Scotland report was available, but that process has now started. An important part of that is ensuring that the standards that are developed for the screening service are consistent where they overlap with those for the symptomatic service, for the very reasons that were mentioned earlier.
I want to ask about the implementation of standards. At various points in the discussion, all the witnesses have identified where different responsibilities lie, but I would like you to explain one specific area a little further. Frequent reference has been made to GP referrals. That is one area in which, as I understand it, good practice guidance exists. Whose job is it to ensure that that guidance is followed?
Ours, I believe, in the sense that when people have discovered solutions to problems, we must ensure that we can generalise their implementation. That relates to our performance management function. The tension is the extent to which one can embrace almost every possible issue that arises in the health service and incorporate it into that function.
I am grateful for your answer; you read between my lines correctly. However, the overarching concern for us all—certainly for this committee—is seeing improvement happen.
For the reasons that you describe, GP referral and the implementation of the protocols are almost number 1 on our action plan, and we will pursue them over the next few months. I am in danger of repeating myself, which I do not want to do, but we recognise the point and are determined to pursue it with vigour.
The final issue that I want to ask about is information for patients. First, could you say a little more—briefly, please—about how awareness will be raised?
I will deal with the question on awareness. In anticipation of such a question, I brought with me an example of the kind of material that is now available. It comes from a project in the Forth valley on bowel cancer awareness, which I think was funded by the New Opportunities Fund. The material is excellent. Other such projects are going on throughout Scotland. I would like to bring an exhibition of awareness-raising material to the Parliament. When we get into bowel cancer screening in a more widespread way, we will need to do more awareness raising. Perhaps Mr Finlay could comment on the information that is given to patients at the time of diagnosis.
Much has happened in the past few years. The networks have generated their own documentation, which they hand to patients. The keystone in the process of helping patients with information and taking them through the difficulties has been the development of nurse specialists, who have the time to speak to patients and their families. The report is full of examples of patients who talk about their relationship with nurse specialists. Inevitably, the doctor is too busy, is not good at communicating or has other things on his mind, but the nurses are particularly skilled at such activity. That cornerstone of patient information and support is in place in most units throughout Scotland.
During the six years that we have been in operation, there has been a sea change in the information that is available and the use that the health service has made of it. One of the roles of the new Scottish health council is to share expertise in that area with boards and to ensure that that continues to happen.
What happens to boards that do not comply with clinical standards?
First, we would look to the local board and its clinical governance committee to take the appropriate action. For that, they are accountable to the Scottish Executive through the accountability review process.
On improving information for and communication with patients, Dr Woods suggested that information on patient experience could be gathered from the patients themselves and used to develop systems. Will you expand briefly on that point?
I invite Mrs Ferguson to say a little bit about this matter, because the top 20 tips that we have been discussing have been informed by that process of dialogue with patients.
From the very beginning, we have sought the views and experiences of patients and their family members. First, we enlisted the help of people who had been through the Royal College of Nursing leadership course and had been trained in conducting one-to-one interviews. In the second year, we invited patients to contribute to the mapping that we carried out with service staff, but they were a little inhibited by that. We learned from that experience and now engage them very successfully in one-to-one interviews in which they tell us their experiences at the different stages of their journey. Family members can add quite a bit to that process. After all, they can sometimes feel left out of things.
Who takes responsibility for responding to patients' issues?
It has to be the clinical staff who deal with the patients.
But who takes responsibility in NHS Scotland?
I think that you are asking whether we could be more systematic in this regard. The answer is yes. We have a number of well-validated instruments such as questionnaires that allow us to measure patients' experience of the health service. As I said, we are examining the matter to make it more systematic and to ensure that it informs the management process.
When taking evidence on the health service and the productivity of the system during the past 12 months, the committee was concerned that there is a sense that productivity is declining in the national health service in Scotland. In answer to an earlier question, Ian Finlay said that the service was overwhelmed by demand and that it could not have predicted that. What do you mean when you say that you are overwhelmed by demand? What are the underlying causes? Why could not the demand have been predicted? How is the service responding to the challenge?
I am talking specifically about bowel cancer, not about demand in general. There have been some high-profile cases of patients who died of bowel cancer and that caught the public's eye. In particular, Bobby Moore, the England football captain, died of bowel cancer in the late 1990s and that received a lot of publicity.
Do you mean an increase in demand for diagnosis rather than an increase in the number of people who have the disease, or have all the numbers increased?
There is demand everywhere. The numbers have increased enormously because people did not present to the service before. Increased awareness has caused demand to run through primary care, through general practice, and into secondary care. General practitioners are very worried that they will miss a cancer, although the likelihood of that happening is extremely small. The whole thing has cascaded during the past five to eight years.
We return to the importance of establishing the evidence-based referral guidelines in general practice so that we can ensure that people raise their concerns with their family doctor. If patients can be managed in that context, they should be; they can then be referred on. That is what we are trying to achieve at the moment.
I thank Dr Woods and all the members of his team. The oral evidence has been very useful and informative for us. We will probably seek to clarify a number of further points once we have read through the Official Report of today's meeting. We will write to you to ask for those clarifications and any further written evidence that might help.
Meeting suspended until 12:11 and thereafter continued in private until 12:38.
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Section 22 Reports