Official Report 326KB pdf
Item 3 is cancer services in Scotland. We are taking further evidence on the issue. We are trying to get a post-cancer-plan snapshot of what people from a range of different backgrounds and viewpoints feel about where cancer services in Scotland are, where they are going and what we can do to improve them.
How do you feel about the empowerment of patients and voluntary sector staff that was contained in the cancer plan? Are you more empowered and more involved in the planning and development of the services? How has that been achieved?
Maggie's Centre has not been involved in any of the strategic planning within the cancer plan, but we were invited to comment on it at the start. The important part of the plan for us, as an independent charitable organisation providing support, was the recognition of the role of independent support facilities. One key issue, of which I am aware from my previous experience as a health care professional in the national health service, is the need for the NHS to work with support facilities such as Maggie's Centre, Tak Tent Cancer Support and CancerBACUP to add to NHS support facilities.
Our Tak Tent Cancer Support group has made contact with the specialised nurses in the local hospital. We have had those nurses as speakers to our group and we hope that because of that they will send patients to the group for help. The specialised nurse is great when people are going for surgery, but people reach the point when they do not want to bother the specialised nurse any more. We feel that the groups are good because they allow people to get help beyond that point.
I would like to focus on the many different aspects of the care pathway for cancer patients, from first referral through diagnosis, treatments, rehabilitation, palliative care and so on. Are there any areas in that pathway that still cause frustration to patients? Have you noticed significant improvements in any areas?
Unfortunately, there are still significant issues for people within health care systems. Speaking anecdotally about the people who use Maggie's Centre, I think that one of their continuing criticisms of the health system provision is the link between primary health care and secondary health care. Getting a diagnosis made and getting into health care systems is still a complicated procedure for some people. It is important that that has been speeded up, particularly within specialist areas such as breast cancer. In addition, the Western general has a new initiative, which is a neurological cancer unit that is starting the one-day diagnosis system. Unfortunately, several people still seem to slip through the net because symptoms are not addressed or investigated by their primary health care physician or general practitioner.
Is that a training issue?
It certainly is. Last week, I spoke to a group of GPs who had invited me to speak to their practice. As an initiative, that is great in its own right. People are aware of what services are available.
I attended a clinic in Glasgow for years, so I was in the system. Nothing was cancerous at that point. Three months before I was diagnosed with cancer, I was told not to go back. I am fortunate that my company sends me for a medical every two years and that I was sent that year, not the following year. Three months after having been told not to go back to the clinic, I was diagnosed with breast cancer. My point is that more facilities are needed to have a better look at patients so that early diagnosis happens. I am fortunate that I was caught early. Had I been sent for my medical in May this year, I might not be here.
That point comes through quite a lot. I spent a day shadowing Anna Gregor at the Western general, which is a few steps away from Maggie's Centre. At the end of every consultation, because I was with her, Anna Gregor asked the patient what they thought about services. Time and again, people said that, once they got into the system, they were very happy with the specialist service that they received in the acute sector. However, patients said that they found it difficult to get into the system. They said that there were communication problems between the different parts of the system. They also said that they had problems at the point of discharge in getting a discharge plan that worked for them and their families. While patients were in the specialist side of the system, their treatment was good, but many of the problems happened on entry to and exit from the system.
Yes. I agree.
The Public Petitions Committee has a petition in the pipeline that is almost ready to be sent on to the Health and Community Care Committee. The petitioner proposes that all women who are called into breast cancer clinics should be given the triple examination. The fact that they are not means that some women do not receive an early diagnosis of their cancer. Do you support that proposal?
Yes, definitely. In the past year, I have met many women who have attended clinics only to find out at a later stage that they have cancer.
That is an important point. We received a response from the minister, which sets out that, because of resource implications—including the thousands of X-rays that will have to be taken—and because there is a slight danger of X-ray-related cancers being given to healthy women, it is not Executive policy for women to be given the triple examination.
It is possible to detect cancer from ultrasound examinations, which are not as dangerous as X-rays. Even though I had X-rays, the hospital had to give me an ultrasound examination to confirm the X-rays.
It will be interesting for the committee to see the petition when it arrives.
I want to continue on the theme of feedback from patients, who have spoken about their experience of the managed clinical networks. In doing so, I refer to Tak Tent's submission, which sets out that the
One of the most important aspects of the way in which Maggie's Centre functions is that we are a self-referral centre. It is up to the individual to choose to access us or not. There is an argument that health care professionals could identify people's needs and refer them formally to us, but that that would alter the dynamic of our centre.
And Tak Tent?
Does Tak Tent want to add anything to what has been said?
Communication between some doctors and their patients is patchy. My daughter had thyroid cancer five years after I had breast cancer; she was diagnosed four years ago. She finds it extremely difficult to speak to her oncologist, which makes me quite upset. I was lucky in that the surgeon who looked after me was excellent at communicating. The quality of communication seems to be patchy. That could be addressed in the training of doctors. To be a patient is to sit on a different side of the fence and it is hard.
You drew attention not just to the communication between health professionals and patients but to the communication among health professionals, which is haphazard. That causes me concern.
When I was in the system, I had to deal with three consultants. I was sold—if that is the right word—a team that would help me through the surgery and the treatment. In time, I found that the consultants did not speak to each other. When I saw one consultant, he asked me what another consultant had said. I did not feel that I was a messenger and did not want to give information to a consultant that might have been wrong, as a result of which something might have happened to me that should not have happened, such as an operation. I had to write to the three consultants to ask them whether what I had said to the surgeon was correct, so that I could have it in writing on my file.
Is that a unique experience or, in your opinion as a member of an organisation that represents patients, is it something that happens commonly to people who come to you for support?
Unfortunately, such an experience is not unique. One of the problems is that people who receive cancer treatment come to large institutions and organisations and many professionals are involved in providing their care. I have worked in the NHS and I know how difficult it is for information to transfer from specialist to specialist.
Would patient-held records help?
Absolutely. That was the second point that I was going to make. Patient-held records are an essential part of that. The content of those records is still up for debate, but the National Cancer Alliance did a piece of work at the end of the 1990s and there is no doubt that patient-held records make a difference to the way in which people feel enabled to challenge and ask questions to ensure that their quality of care is maintained. I hope that all hospitals will use patient-held records to some extent. Those records do not have to be extensive, but they should include things to be noted from previous clinics along with plans about future treatment.
Although I feel that I was lucky that there was communication between the different doctors who looked after me, the situation is often hard. I am the secretary of the south-side group and I know that there are patients who experience difficulty in going between different hospitals and different doctors. I have noticed that the more mature doctors are better at communicating with one other. I do not know whether the young doctors have been trained in a different way, but they do not tend to communicate as well with other doctors in other hospitals.
I was about to ask how good is the information that is provided to patients and their families, but my question has been answered in part. However, I want to pin down some of the reasons behind the lack of communication: is it caused by a lack of clerical and medical secretaries to pass the notes on? It was mentioned that some young doctors might be over-ambitious, so is the lack of communication due to personality differences between doctors? Why do patients receive poor or even muddled information?
The lack of communication is probably caused by a mixture of things. Just before Christmas, I was awaiting the results of a mammogram. Although the letter was dictated the week after I had had my mammogram, it took four weeks to reach me. By the turn of the year I was going off my head waiting for the results so, unable to contain myself, I phoned the breast-care nurse. I was fortunate in that she was able to access the information and to put my mind at rest because everything was okay. However, even though it was a holiday, that was quite a long time to wait. The letter stated when it was dictated, when it went to the typing pool and when it was typed; there was quite a time between those.
Was the letter typed approximately four weeks after the consultant or surgeon had dictated it?
Yes.
We have heard anecdotes that doctors sometimes give up trying to get a letter out through the NHS because they say that it can take 12 weeks. That is a clear clerical problem that is caused by the lack of medical secretaries. Does anyone have any other suggestions about the reasons for poor communication?
The staff might be overworked—patients are pushed through very quickly. Apparently, on the day on which I was diagnosed, my surgeon had seen 60 patients, four of whom were diagnosed. It might help if, instead of surgeons telling patients what is wrong and then sending them home, information could be made available to patients, which they could read and ask questions about when they have recovered from the trauma of being told devastating news. At the moment, patients are just told what treatment they are likely to receive and then sent home.
Perhaps that can be attributed to shortage of time and people being overloaded with work.
It is also possible that there are not enough resources to give patients that information. Not every patient that is seen needs such information, but some information should surely be given to those who need it. I had never in my life dealt with cancer—it is not the kind of thing on which you have books at home; rather, you need people who know about it.
Finally, does anyone want to comment on lack of pain relief? CancerBACUP claims that about one third of cancer patients do not receive adequate relief in the community. Does anyone have any comments on denial of certain cancer medications?
In my experience, people are never denied treatment. The issue has much to do with educating the general public.
I am talking about the denial of funding and postcode prescribing of medicines such as those for colorectal cancer.
I have absolutely no experience of that.
Did you have difficulties with sending letters, with communications and with weeks of delay when you worked in the service?
Yes I did, unfortunately.
How long were delays?
I will not give examples, but there are delays and missed communications, even interdepartmentally. Such delays are not always caused by a unit's being overworked. They can be caused by the way in which a system has been established or the nature of some of the staff who work in that system. Not everybody is 100 per cent motivated to ensure that things are done effectively on the day. I would not necessarily blame only the system or a lack of resources.
The Scottish cancer plan acknowledges that facilities for teenage and adolescent cancer patients are limited. Have your organisations had experience of dealing with younger people who suffer from cancer?
We and Tak Tent have such experience. In Maggie's Centre Edinburgh and the other Maggie's Centres that we are developing, a key part of the programme is a young person's support group, which is for people from the age of about 16 to the mid to late 20s. There is a deficit of service provision for that population.
When I first took ill in 1991, I was 11, and there was nothing for young children of my age. There was nothing until about four years ago, when I was introduced to Tak Tent. It had started a young adults group for people aged between 16 and 25. The name of that group has recently changed to conTak. Kids who are aged between 16 and 25 can go along and chat about general issues. If they want, they can chat about their illness, but they do not have to. From when I was 11 until I was 18, there was nothing.
Was nothing in the health service geared to young people?
There was nothing for that age range.
To what extent have the problems of long-term underfunding and staffing shortages at the Beatson oncology centre in Glasgow compromised patient care?
I am just a year from diagnosis. I last saw my consultant—who has now left the Beatson—in October last year, when he told me to return after six months. I phoned the centre after I heard about his leaving and was told that my appointment would be rearranged with one of the remaining consultants. Before my appointment, I received a letter that told me not to return at all. Patients who have finished their treatment are referred to their surgeon. If another problem occurs, the Beatson will see me again.
In the same week that Madeleine Stafford had that experience, another lady from our group phoned me to say that at her six-week check-up she was told after radiotherapy not to come back. That lady was absolutely devastated, because she had a very aggressive type of cancer and felt that the oncologists were abandoning her. She found that to be very upsetting.
Over the past few months a great deal has been done to improve the situation at the Beatson. As patients and patients' representatives, have you been able to discern any improvements, or is it too early to say?
It might be too early to say.
I am not at the Beatson any more. However, as has been said, the centre suffered from a lack of administrative staff; administration was not always as good as it could have been. The day after I received a card for the October appointment to which I referred, I received a card to attend a clinic in Ayr. I phoned the Beatson to ask why I had to go to Ayr and was told that there had been a mistake. The appointment in Ayr was cancelled, but when I went for my correct appointment I found that that had also been cancelled. I then had to wait until I was given another appointment. Administration at the Beatson could be improved. It is traumatic for someone who is waiting to see an oncologist to be told, when he or she arrives at the clinic, to go home. Fortunately, I live in Glasgow. What would be the situation of someone who lived elsewhere and had to arrange travel?
Would you like to raise any other issues about which we have not asked you?
At hospitals, patients are assigned breast cancer nurses, whose performance is particularly poor. On diagnosis, patients are given a number that they are supposed to be able to phone at any time. However, when they phone up they often reach an answering machine. Perhaps three days later, they are called back. That is not good enough.
We need formally to pursue a structured approach to psychological support within the NHS. I know that such an approach is mentioned in the national cancer plan, but the root problem is the training spaces that exist for clinical psychologists and the positions that are available after training. We are aware that we will have difficulty recruiting clinical psychologists for our new centres, partly because there is currently a dearth of such professionals. We are having difficulties, even though we are an independent organisation that might be seen as a more attractive employer than the NHS.
Thank you for your oral and written evidence. I put on record our thanks to both Maggie's Centre and Tak Tent Cancer Support for all the great hard work that they, their volunteers and staff put in. I know a little more about Maggie's Centre, because it is located in my constituency. I know from talking to patients that they get an incredible amount of support from organisations such as Maggie's Centre and Tak Tent Cancer Support. Both organisations are expanding, which is good news. The need for the services that they provide is increasing all the time.
Meeting suspended.
On resuming—
Our next section of witnesses—I am not sure what to call a collection of witnesses; victims, probably—will address primary care. We are trying to get a snapshot of where cancer services in Scotland are post the cancer plan, and to tease out the key issues that surround primary care. We have heard this morning that there are problems with communication between the primary and secondary sectors. Our anecdotal experience is that once people are in the system, they are relatively happy much of the time with the care that they get. However, accessing the system, being diagnosed and then coming out of the acute sector into community care is at times difficult. Multidisciplinary primary care professionals are ideally placed to give us an insight into that.
Do our GP witnesses believe that the recently published referral guidelines for GPs will result in marked improvements for patients who are referred to secondary care?
I sat on the sub-group that produced those referral guidelines. They were adapted from the English ones, which were evidence based, and which have been in force in England for some time. The evidence that is coming through from England is mixed. My view is that the referral guidelines were needed, but I am not convinced that they will make a big difference. Historically, a lot of the evidence that has been built up around how patients present with cancer has come from the secondary care sector. A specialist will see a series of lung-cancer patients and identify how they presented to him. In general practice, every day we see people with coughs, breathlessness, chest pain and occasionally blood in their spit. It is very difficult to identify those who should go on for further investigation and we will never get it right 100 per cent of the time. There will always be people who appear to have been missed.
The referral guidelines will be very useful, but GPs must be able to access them easily. In their current paper form, they might lie in inaccessible parts of the doctor's surgery. I know that work is going on to make them available through GPs' information technology systems. If they come up on the screen at the time of the consultation, that will help.
Dr Millar talked about primary and secondary care working together. I have experience of working with the Edinburgh breast unit on the referral guidelines and a pathway for fast access that is IT-linked. Both secondary and primary care owned that and worked together closely. The project is going ahead and it is being audited. The early audit shows that referrals are very fast if they are done electronically using the guidelines on the computer in the GP's surgery. The pro forma is worked out and sent electronically to the breast unit and the appointment is speeded up.
We must try to ensure that people get across the primary-secondary care divide appropriately. Leaving aside screening to start with, the first concern is that patients' concerns are perhaps not elicited in the consultation with the primary care practitioner, whether that practitioner is a GP or a nurse. Fundamentally, that is a time issue. Some patients are slow to present at consultation and we are constrained by our consulting time of 10 minutes. The average consultation time in this country is eight and a half minutes, which is inadequate.
You are saying that a GP should occasionally be able to use his or her judgment and knowledge of the patient. I came across a situation in which someone had returned to his GP four times. It turned out that the chap had a brain tumour, but no one seemed to twig. The GP must have thought that there was something seriously wrong, because the patient had not presented in 25 years but suddenly started coming back. In the end, the patient was rushed to hospital. That kind of information would not fall within the guidelines, but a GP would need some flexibility to be able to cover that sort of thing.
One of the written submissions mentions the fact that less than 4 per cent of the new cancer money is going to primary care. What needs to be done to involve primary care fully in the delivery of services? The BMA submission states:
The investment is low because primary care was not prepared for the cancer plan. There is little about primary care in the cancer plan and no primary care professional was involved in its production. We do not have a mature network of individuals in primary care with an interest in cancer services. Therefore, not many groups prepared proposals, although some of those that did are represented today. Macmillan Cancer Relief, whose hat I am wearing today, has recognised the importance of primary care in cancer care for some time and has invested heavily in nursing and in GPs over the past 10 years.
How can there be a managed clinical network if 90 per cent of patients' contact with the NHS is with GPs and if GPs and primary care are not involved in that network?
We are getting there. We have an idea of what should be done. The local health care co-operative structure feeds into primary care trusts and unified health boards. I cannot speak for the nursing side, but we believe in the small network that exists within general practice. We hope to develop a network of LHCC cancer leads who would have a number of tasks, including feeding into cancer networks, so that primary care would be fully engaged, if you like, with the emerging regional cancer networks. Therefore, primary care issues would be addressed more formally and, along with our hospital colleagues, we would be able to bid for cancer moneys, which we have been unable to do from a standing start.
I was the representative of the Royal College of General Practitioners on the managed clinical network working party for palliative care. By definition, it is almost impossible for general practitioners to be really involved in managed clinical networks, which are disease specific—that is the networks' specialty. GPs' specialty is the individual patient. I could be a member of anywhere between 150 to 200 managed clinical networks, but that would not leave me with a lot of time to see patients.
Susan Smith wants to pick up on the rural dimension.
I work in a specialist palliative care unit, so I meet patients who are reaching the end of their journey. They often encounter problems with accessing services if they live in rural areas. They are happy once they get into the unit, but a problem for them is knowing how services integrate.
The BMA's submission says that the
It may be helpful for me to explain the role of screening. The idea behind screening is to take a group of people who may or may not have something wrong with them, apply a screening test or procedure and refer on people who are much more likely to have something wrong with them for more specialist tests and investigations. However, if we were to refer that entire group of people to the specialist centres, the centres would become totally overwhelmed and we would end up giving inappropriate, unnecessary and quite possibly damaging or dangerous tests to people who do not need them.
Given that Susan Smith sees patients who are at the end of their journey, I ask the witnesses to address the point in the BMA's submission that
That claim is based on the work of Dr Neil Campbell in Aberdeen. He examined a number of patients with breast and colorectal cancer who lived at different distances from the cancer centre in Aberdeen and found that, on average, the cancer at presentation was at a slightly more advanced stage. However, there was no implication that that had anything to do with any difficulty in accessing cancer services.
We are talking about the BMA's submission.
Well, I know that the BMA has said that. However, I challenge the claim.
The BMA submission says that there are
Although there were slight differences in survival rates, those related not to services but to the patients' late presentation. In other words, it was not that the GP delayed putting the patient into the system, but that there was more of a delay on the part of patients, which affected eventual survival.
I want to link the issue to people in deprived areas, because my practice includes quite a large area of deprivation. Those people access primary medical care less readily and present themselves later. Because we deal with them later in the journey, they do not do as well. It is also more difficult to get them to have screenings or to take up health promotions. We must find more novel ideas to attract people, either by taking services into the community or by making access easier. Certainly, later presentation in deprived and rural areas makes the outcomes worse, but that is more of a problem about educating patients on what to look for and when to present themselves.
I appreciate that patients might present later because of their distance from services. However, the BMA submission clearly states that patients
Managed clinical networks have the potential to do that. However, the three regional networks are all at different stages of maturity. I wanted to mention earlier the primary care input into the managed clinical network. In south-east Scotland, the primary care community is well represented in the regional cancer advisory group, which oversees the south-east Scotland cancer network. We feel that we have a strong voice in the network and that we are getting ourselves organised; indeed, we made a successful bid for £185,000 of the new money for cancer in Scotland.
I want to move on to the question of resources. My colleague Mary Scanlon has already mentioned that less than 4 per cent of the new cancer money is being allocated to primary care. In its submission, the RCGP says that
We are seeing the beginning of that process. We have successfully bid for each practice in south-east Scotland to have support for a register of all its cancer patients. We hope that practices will be able to have regular multidisciplinary meetings, involving the whole primary care team, to discuss their cancer patients and improve their care. We hope to lift the quality of care for all our patients. Investment will lead to a general improvement in care. General practitioners have to get organised to bid for money.
Has the inadequacy of having less than 10 minutes' consulting time been a factor working against early diagnosis and referral? I recently came across a practice in Dundee that now has a list of 11,500 patients. It has had to set a practice boundary; if people move beyond that boundary, they are taken off the list. Is that an increasing problem in practices across Scotland? If people have less time to see patients, they may miss what is wrong with them.
The problem is increasing. A huge recruitment crisis and a huge logistic problem are brewing. People who want to do general practice are not coming through the system. Morale is not high in general practice and people are not choosing to do it.
My wife runs one of the few NHS homoeopathic clinics and she gets half an hour with each patient. Is that the kind of time that GPs would require?
That would be fantastic. I suspect that, whatever time I was given, I would want more, but the idea of having even 15 minutes is very appealing. I rely on patients' not attending; I rely on gaps.
So a key to any effective cancer plan would be to have more GPs with more time to see patients.
I am a passionate generalist. We need more generic workers, more general practitioners, more community nurses and more practice nurses seeing fewer patients so that there is better continuity and availability. If we had that, we would empower patients and even head towards a citizen-led NHS rather than a primary care-led NHS. That would be great.
The issue of training came up with our previous witnesses. Do GPs have the training and the support that they need to implement the cancer plan? I would be interested in the nurses' views on that.
Dr McCallum, did you want to come in on another point as well as on that one?
I will comment on training. In Lothian, we have had funding from the new opportunities fund to carry out nurse and doctor training on cancer. There is also support for GPs from the Macmillan Cancer Relief network.
Although I work in the acute sector, I work closely with colleagues in primary care. Education is a much-debated topic. I am a specialist nurse, but we cannot all be specialists. I echo what Dr Paterson said: we need more generic training and not necessarily so many specialised qualifications. The problem is that there are too many patients for one practitioner—whether a medic or a nurse—to cope with.
Between 1998 and 2000, I visited every practice in Fife to find out how they delivered cancer services to their patients, their problems and what they thought they did well. I was keen to hear about postgraduate cancer education and was distressed to find that only half the GPs to whom I spoke recalled receiving any postgraduate cancer education in the previous five years. Therefore, we set up an educational programme, which has done well in attracting input from primary care professionals in the past two years. A need exists and it must be constantly measured and responded to.
The written submissions refer to the many cancer treatments that are prescribed and administered in primary care and the role of primary care in hospital-based treatments and follow-up care. Should the role of primary care be expanded in such areas? If so, in what way? What would be the general resource implications of doing so?
I work in acute care, but many patients with whom I work—such as breast cancer patients—come into hospital for treatment. There is a theory that care in their own homes would be more advantageous to them.
The pharmaceutical industry predicts that the next generation of anti-cancer drugs will be effective, less toxic, probably oral and very expensive. Many of those drugs will be given at home, so there are implications for primary care prescribing budgets. We are looking at an eight to 10-year period for that, so we have to think well ahead. If we do not do that, we will be in big trouble. Currently, the treatments that we give in general practice often arrive on our doorsteps without advance warning. Generic information about treatments must be provided to the primary care sector in advance. The contact between the consultant who prescribes the medication and the GP who gives it has to be good, so that the patient is treated safely to the highest standard.
Does anyone wish to add to that?
Our concern is that we are more or less running flat out to keep up just now. Any shift of work into primary care will have to be met with more workers to do the work—not money, but workers.
Euan Paterson gave an example of recruitment difficulties. I will give a personal example. In 1983, when our practice last advertised for a partner, we had 70 applicants. I am taking early retirement this year on medical grounds and my replacement has been appointed, but the number of applicants was less than 10 per cent of what we had before. We are fortunate to have been able to appoint a good applicant to the post, but there are many practices in Scotland with vacancies and with lists that are too large for the remaining number of GPs. That is a serious problem.
Dr Millar stated in his written submission to the committee that many people die in institutions, despite wishing to die in their own homes. Marie Curie Cancer Care's submission states that about 68 per cent of patients want to die in their own homes but do not get the chance. What is the reason for that barrier, which prevents people's wishes from being respected?
Patients who wish to stay at home often go into institutions. They recount that one of the reasons for that is general support for themselves and their families. Other reasons are the fear that their needs will not be met in the community as quickly as they would like, the belief that medications or special equipment, such as special mattresses, will not be available, or the worry that they may have to wait for practitioners to meet their needs. Patients may go into institutions when there is a crisis. Short admissions may be needed at such times to sort things out, because in the community it is difficult to react suddenly to a crisis.
Could the issues to do with mattresses, for example, be solved?
Yes. Many of the issues could be resolved. I am not sure about the resources for equipment. There is equipment in the community, but I have no experience of how it is managed.
I am speaking as a GP from one of the most deprived areas of Glasgow. The situation will be different in more affluent parts of the country, such as Edinburgh, but we have a huge problem. The south side of Glasgow has 360,000 patients. We have 14 palliative care beds and we have no facilities for what I term intermediate care. Some nursing homes can be used, but there are huge problems with staff.
You are saying that we have the worst of both worlds. There are only 14 palliative care beds in your area, yet there is no joined-up access to social work services and so on that could help in the home.
That is correct.
Sometimes, the social work departments arrange good teams, but only after pressure has been applied.
The problem is huge in Glasgow, as social work services in the city are desperately strapped for cash and are really struggling.
You are telling us that the dying are not getting the help that they need and want either way.
That is correct.
In Lothian, we got a small proportion of the cancer money compared with what went into the secondary sector. It allowed us to purchase more equipment for the community, but we had no way of getting the equipment to the patient. We were lucky in that we were able to find the small amount of money that we needed to get a man with a van to transport the equipment. That arrangement has benefited 50 or so patients who have been able to die at home. Small amounts of money can, when they are used well, make a huge change for people.
We are pressed for time, so I will ask a final question. How do you feel about nurses in primary care being involved in the changes to cancer service delivery? I expect the nurses to answer that question, but I expect that the doctors will have an opinion as well.
My knowledge of primary care nurses is limited, but we work in partnership in Ayr and I hear a lot of what goes on through the Royal College of Nursing. In Ayr, a sub-group is examining ways of developing joint protocols with primary care so that nurses can more effectively link with services.
Are there any areas at the primary care level in which the role of nurses could be developed further? You have talked about going into people's houses and so on and, obviously, community nurses have a role to play in that regard.
The acute trusts are developing specialist nurses that will link with the community, not so much as a hands-on service as a resource for education to help outwith the primary care sector. In Ayrshire and Arran NHS Board, there is a chance to develop chemotherapy nurses in the community so that patients can be nursed throughout their treatment pathway.
In the Highland NHS Board area, all community nurses who work with palliative care patients work closely with the palliative care team and see themselves as a vital part of that team.
The huge strength of primary care is often the pre-morbid knowledge of the patient and the carers, which both general practitioners and district nurses have. More district nurses could give a more general and holistic service, perhaps with bits added on at the edges, using the same number of people, so that we could keep the number of team players down. I appreciate that there needs to be a team, but we have already heard a patient representative talking about the problem of having a relationship with a team, which is difficult.
One of the points that has come out of patient-centred research is that patients feel that the part of the journey at which they have the least support is the beginning, when they first present to the GP—before they even get into specialist services—for testing and diagnosis. We have been considering the role of the district nurse, practice nurse or link nurse as an early support worker in asking patients what their concerns and anxieties are at that stage. Patients will not necessary come with questions, because they think that they are being difficult. Support at the early stages is being developed, but it is not being resourced well.
Macmillan Cancer Relief has piloted a model that involves a tracker nurse. That model is based on primary care in a big practice or group of practices. The individual nurse tracks through the system the progress of patients who are diagnosed as having cancer. Those nurses do not provide hands-on care, but are based firmly in primary care. The evidence from that is building up.
Some Macmillan nurses will be here later, so we can ask them to pick up on that point.
Meeting suspended.
On resuming—
I welcome the next panel of witnesses to the Health and Community Care Committee. We will ask a series of questions, after which witnesses should indicate to me whether they wish to come in on the back of a question.
I want to ask about the quality and consistency of pain control that is given to cancer patients in Scotland. Marie Curie Cancer Care suggested in its submission that 58 per cent of cancer patients suffer uncontrolled pain. The submission also contains a couple of examples of situations in which the standards of the Clinical Standards Board for Scotland are not being applied because of lack of provision. Can you tell me whether the Scottish intercollegiate guidelines network's guidelines and the core principles in the Clinical Standards Board for Scotland's standards are at fault? If those guidelines and standards are fine, is the problem that resources are not being made available locally to apply them?
I do not think that the SIGN guidelines are at fault—they are very good and are well integrated into the Clinical Standards Board for Scotland's standards. Some of the GPs alluded to the problem that guidelines and standards are often difficult to access and that they are not always used as well as they should be.
Is the problem one of educating GPs to apply the standards? Is it a problem of resources?
I am sorry—could you repeat the question?
Is the problem that the resources are not available on the ground, or is the problem ignorance among GPs and district nurses?
We must acknowledge that the problem is about GP resources. GPs are very busy people; many pressures come at them from different angles and they have interests in different areas. Some GPs who have an interest in palliative care are good. They read all the information that comes in and they follow the guidelines, but others are not able to do so.
We heard evidence from a number of GPs that empowering GPs and district nurses, who know the patients best, would be the most effective way in which to deliver palliative care throughout Scotland. Is it simply a question of providing those non-specialist health professionals with adequate training?
One of the important elements of palliative care is the team approach, the benefit of which is that different members of the team bring different things to it. Empowerment of district nurses and GPs is an important part of that approach, but they should not—they cannot—work in isolation. They should continue to work as part of, or with support from, the specialist palliative care teams.
Are those specialist teams common in Scotland?
They are not common. They tend to exist in areas where there are hospices or hospital support teams.
Should specialist teams be part of a managed clinical network?
Absolutely. One of the issues around equity of access to services is that there is no written standard that says that there should be X services of any kind per head of population, or per thousand population. Specialist centres arose in areas that had pressure groups or where funding was available. That is how voluntary hospices that deliver specialist palliative care were established. There are some NHS specialist palliative care units, but they tend to be based in the central belt. That is the way in which provision has grown.
Is there no national strategy?
No.
I do not believe that all our patients expect good pain control. We have a job to do to tell them that good pain control is available. The Scottish partnership hopes that we can work towards that with our partners.
Are the facilities in Scotland for children with cancer adequate?
I will try to answer that, but I can do so only with my palliative care hat on. I realise that there is no one here from the acute sector. In my experience, children in Scotland who have cancer are cared for very well. The expertise is in the tertiary centres in Edinburgh, Glasgow, Aberdeen and Dundee. However, there is a good support network in the community, involving nurses, community children's nurses and nurses in the tertiary centres. Generally speaking, support in the community and in the acute sector for children with cancer seems to be fairly good.
Are both their physical and psychological needs covered?
Yes. A multidisciplinary team approach is taken, as Susan Munroe said. The hospitals all have Sargeant social workers who are dedicated to the families of children with cancer, who support the Macmillan and Cancer and Leukaemia in Childhood—CLIC—nurses who work in the community and on the wards.
Some district nurses struggle to care for children with cancer in the community because it is a rare condition; they do not regularly encounter children with cancer. They find it difficult. It is an emotional journey for nurses. There is an issue about support for nurses and the way in which they are educated to look after such patients. There must be better integration of the hospital service and the primary care service. The primary care staff need the back-up of the specialist services in caring for patients in their homes.
Given the fact that more people are now expected to live longer with cancer, what developments are taking place to plan the future capacity of palliative care services?
It has been important to have representatives of palliative care on the Scottish cancer group. You are right to say that, as cancer care improves there is—rather than a need for less palliative care—a need for more palliative care, because the illnesses will become more complex and last longer. Most Scottish hospices and NHS palliative care units have waiting lists, which is not good. There are no specific plans to increase the number of beds or to expand services at the moment. However, through the Scottish Partnership for Palliative Care, we are right up there with the Scottish cancer plan and the Scottish cancer group.
Are you saying that more needs to be done?
More will need to be done as people increasingly live alone, as symptoms become more complex and as people's expectation of good symptom control increases.
There are a few initiatives in Scotland to improve the quality of care that is delivered at home. Some areas are trying to deliver 24-hour access to community palliative care; however, I believe that none of those initiatives is being properly funded yet. It is a fairly new concept in redesigning services and improving care, which aims to ensure that people can stay at home longer instead of being admitted to hospices.
Given the fact that people are going to live longer with cancer, how do you respond to the point that the Royal College of Nursing made about work-force planning when the most reliable data on appropriately educated cancer nurses are six years old? Given the fact that hospices and the NHS have different information technology systems, which you say hinders the transfer of information and communication between them, how can we plan effectively for patients?
On IT, all the voluntary hospices in Scotland should be linked to the NHSnet. I do not know why that has not happened, but as a matter of urgency they should be made able to communicate quickly with hospitals and primary care services.
Have you submitted a bid for money from the cancer plan to do that?
Actually, I happen to work in one of the minority of NHS hospices, which means that I am linked to the system. My colleagues have not submitted a bid for that; however, they requested a link to NHSnet several years ago and expected to join, but that has not happened, which is probably down to resources from the local trust.
The RCN's submission says that its information on appropriately trained cancer nurses is six years old. What is the current situation?
Throughout Scotland, most nurses in most settings are involved in the delivery of some kind of cancer care. For example, a local study that we carried out in the north-east of Scotland showed that about 90 per cent of nurses are involved in some form of cancer care. There are different levels of education. Lead cancer nurses and senior nurses in primary and secondary care need cancer care qualifications to become nurse specialists.
My final question is on palliative care. Recently, Macmillan House in Orkney, where Lynn Adams is based, was threatened with closure because the nurses were needed for the acute hospital. Will that become a wider problem throughout Scotland, given the future shortage of staff?
What is happening is wrong. As I said, there is as much need for palliative care as there is for cancer care; indeed, both should grow together. What you have mentioned has not happened in my area, because palliative care will probably be linked with primary care in the primary care trust. That is a good mechanism for protecting palliative care.
Although the threat to Macmillan House was averted, it still hangs over the centre. Is it wrong to take nurses from palliative care and put them in the acute sector?
Yes, for the reasons that I stated.
Lynn Adams mentioned the need for nurse education, nurse specialists and so on in cancer care. Is palliative care training for non-specialist health professionals adequate, or can it be improved in some respects?
Training in general is not adequate. Individuals and groups of staff have been well educated and have gained experience in cancer care over a number of years. However, as I said, we need to consider different ways of providing education.
Should palliative care form part of the basic training for nurses, GPs and so on?
Yes. Nursing and medical students should be introduced to palliative and cancer care in pre-registration courses, which should continue throughout their careers.
Is such training introduced at that stage at the moment?
Yes.
Are you satisfied with the current level of training?
A lot more could be done.
So training could be improved.
Yes.
In what ways?
We should allow more nurses to take courses and degrees in cancer care. Furthermore, we must think about continuing education in the form of updates, short courses and training in the workplace.
Is more postgraduate training than undergraduate training required? The problem is that education after qualification should be better.
Yes. Education needs to continue.
The cancer plan said that the provision of 24-hour support at home varied throughout the country. Will you outline any measures that are being taken to address that?
Quite a few projects around the country are intended to address that. The Marie Curie nursing service is working with a variety of health boards and trusts to consider developing hospice-at-home services around the country. I am involved with a project in the north and east sector in Glasgow that is conducting a pilot study on redesigning a range of services to provide 24-hour access to palliative care services and make better use of the available resources, before we start considering the additional resources that we need. That is fairly high up the agenda and is being addressed.
Your written submission highlights the variation in the provision of specialist palliative care. Is the Scottish cancer group addressing that problem? What would you like to be done?
I am not part of the Scottish cancer group, so I do not know about it in detail, but the information that is available on it suggests that it is not doing anything to deal with provision. We need to consider setting minimum standards of service availability throughout the country. We have many standards for services that are delivered, but nothing says what level of service should be available anywhere.
Are you confident that every patient is receiving adequate pain relief? Could that be improved?
There is enough evidence to suggest that that needs to be improved.
We know from a study that the Scottish Partnership for Palliative Care conducted for the Scottish cancer group that palliative care support in our Scottish hospitals is patchy. Some hospitals are quite large, but have little specialist input to dealing with the suffering that palliative care can address. That is new information that has been taken back to the Scottish cancer group.
We have heard about a lack of communication with patients. One patient group said that patients must wait up to four weeks to receive a letter after it has been dictated. I have spoken to doctors privately who told me that they have waited up to six months to receive a letter. Have you experienced such delays?
The first part of your question related to letters between doctors and patients.
Most often, communication is between hospitals and patients and between hospitals and GPs.
I work in palliative care in the NHS and I receive instant e-mails from managers and central Government. I am not permitted to put any patient details in e-mails. Equally, I am not permitted to use faxes, for reasons of confidentiality. That is completely wrong. We need major investment in systems to allow me to e-mail a GP, a district nurse or a hospital consultant with patient details.
Is that because you experience delays with paperwork?
The other delay is in secretarial support. That appears particularly in the cancer wards from which I receive referrals.
How long do you have to wait to have a letter typed?
We might wait two or three weeks.
Have you applied for any funding or help with that?
I am talking about incoming letters to me. I do not know whether people who are experiencing problems have asked for support.
I thought that Dorothy-Grace Elder was going to ask about the voluntary sector generally.
I am sorry; I thought that, as I had asked another question, I would take up too much time by asking about the voluntary sector.
I work in the NHS, but I have gained a great deal from the voluntary sector. It made me go into my specialty and helped us to design the rooms in our NHS unit.
Yes, I do not doubt that, but—
We need the voluntary sector.
Oh yes—I do not doubt that at all—but are we becoming over-dependent on, and expecting too much of the voluntary sector, time and again?
Yes. One current issue is that we expect the voluntary sector to train consultants and to bear the whole burden of cost. That is not fair.
I work in the voluntary sector but I do not feel over-burdened. We feel that we are equal partners with the NHS and most of us would like that to continue. We are equal partners in the provision of the care but we are not equal partners in receiving funding.
I think that we have covered most points so, if there are no further points, I thank the witnesses for their evidence this morning.
Meeting suspended.
On resuming—
We welcome witnesses from the Royal College of Nursing and Amicus MSF. We do not have anyone from Unison, which is a change from the information that members have. We will go through questions first, but if there is anything that the witnesses wish to pick up on later, please let me know.
One of the aims of the cancer plan was to empower staff, the voluntary sector and patients in order to give them a voice in the planning and development of services. To what extent has that been achieved, nearly one year on?
I am a senior lecturer in cancer nursing at the University of Glasgow and I am here with the RCN. I have been greatly involved in cancer service development across the United Kingdom and I worked with the Commission for Health Improvement in managing the review of cancer services in England.
You mentioned the medical model of care. Traditionally, that was the only care package that was available. How does the cancer plan provide an opportunity for you to make that into a team model of care?
The managed clinical network structure has the potential to do that. There needs to be a much more patient-focused approach to care throughout Scotland and the UK. Although such an approach is much talked about as being best practice, it is not happening in clinical care. The biggest reason for that is probably the way in which cancer services are developed and structured, which means that the patient is not put at the heart of those services. Chemotherapy and radiotherapy are normally managed between the hours of nine and five o'clock. It is difficult for patients to continue working throughout their cancer treatment. Supportive care is usually provided on the same basis. Previous witnesses spoke about out-of-hours support for patients. Although there is much rhetoric about putting the patient at the heart of care, that does not appear to be happening in practice.
Is there a need to look at the whole patient journey and to ensure that we redesign the services rather than just building in certain areas and saying, "This is it"? Should we dissect the journey in an effort to involve the patient and to encourage the whole team approach?
Absolutely. There are examples that show that that is happening. The managed clinical network structure is being used to facilitate that, especially in relation to the lung cancer patient problems in Glasgow, for example. Lung cancer is a huge issue, in the west of Scotland in particular. We are working as a group with the health board, with all the clinicians, with patient advocacy groups and with the Roy Castle Lung Cancer Foundation to tease out where the patient pathway lies and where the bottlenecks are. We are working with the industry to assess how we can work in partnership to improve the care processes for patients. That takes a lot of energy and effort. There should be more central support in recognition of the time and energy that is required to ensure that the best possible care is obtained. Such care should be patient centred. The process is not simple, but it is certainly possible.
One of the biggest issues to affect all disciplines in the NHS is staff shortages. What needs to be done to address work force shortages in the specific professional groups that your organisation represents?
Yes, we have a problem. The Parliament has debated shortages of nurses and other health care professionals. The facing the future group is looking across our work force issues. If we hone in on cancer, the fact that our community and district nurses have an older age profile means that we will lose a high proportion of those nurses to retirement.
We heard earlier about problems of communication. Some of the specialist cancer nurses whom I have come across in the acute sector have been the named person to whom the patient can come back and speak on the phone. We heard from patients groups earlier that that communication sometimes breaks down. Do you see communication as critical for specialist nurses?
That is an important point. I talked to our colleagues about that when we were backstage. The situation for specialist nurses is patchy. Many of them have no sickness cover or holiday cover and sometimes nobody else is there with them. Neither the Scottish Executive nor we are able to give the committee evidence on how many specialist nurses there are, what they are doing and whether they are resourced adequately. Nurses often cannot play the support role that they would like to play and they cannot co-ordinate and share information, because there are not enough of them and they are not prepared, trained or resourced adequately to do so. One of the witnesses gave powerful evidence this morning when she said that she phoned and all she got was the answering machine. That is backed up by what we know—nobody else is there to take on the role that specialist nurses play.
My question is for Terry Kehoe. Your written submission talks about the eight-year period for training a clinical scientist and says that, in your view, training places are not sufficient currently and that a solution would be to increase the number of places. There is a more immediate problem. Last week we heard from Society of Radiographers about staffing shortages. The college raised a concern about the inability of perhaps the Beatson oncology centre to use the new linear accelerators to maximum effect because of staffing shortages. Would you like any action to be taken immediately or in the short term to try to recruit and retain clinical scientists in Scotland rather than waiting eight years to get more on stream?
Our submission states that a two-stage process is involved. One stage is the grade A training scheme, which is very general and which people who come straight from university go into. We can accelerate that process a little by increasing the number of people in grade B, the higher training scheme for physicists. We propose to double that number to six in Scotland. Two years after their appointment, those physicists would become practising radiotherapy physicists. The training period would therefore be shorter than eight years. Such an approach would help. The Scottish Executive could take the strategic step of allowing training posts to be created and funded centrally. In that way, we hope that we will get enough people to fill the gaps that exist.
Do you recommend specific measures to assist retention? We face competition from south of the border and elsewhere.
At the moment, the career grade for physicists is grade B. Every three years, those physicists have to be reassessed. If they want to move up the scale, they are required to undergo an assessment, which is sometimes an external assessment. We should give local line managers, who know their staff, more flexibility and allow them to retain staff by providing them with local incentives to stay. I am talking about local promotions and new projects.
The work that has been done with the Clinical Standards Board for Scotland and the Commission for Health Improvement in England highlighted the role of clinical nurse specialists in communication. There is concern about the variation in clinical nurse specialist activity. We know that the case loads of clinical nurse specialists range from 70 to nearly 1,000 patients. With such wide variations in case loads, there can be no equity in the communication and supportive care that clinical nurse specialists provide.
Last week, when we visited the Beatson, we spoke to a physicist who was using scanners and big computers to draw up treatment plans for patients—identifying exactly where tumours were located and how they should be attacked. That work is a vital cog in the treatment plan. However, we were told that the starting salary for a physicist in the NHS is around £15,000 a year, which is a joke compared with what physicists can earn in the private sector. There is a real recruitment problem. Surely you are not suggesting that the way in which to address that is to replace national pay bargaining in the NHS with local pay bargaining? In his answer to Nicola Sturgeon's previous question, Terry Kehoe seemed to suggest that, when he spoke about offering local incentives.
The incentives that I was suggesting do not relate to pay. At the moment, if staff want to have career progression at the centre where they are working, they and the job that they are doing must be assessed after three years. There should be ways of developing jobs and individuals together. That does not mean making local pay agreements. However, in England certain posts have been advertised at more than the established rate, in order to attract people away.
The hospitals in England to which you refer are undermining national pay bargaining in the health service and setting a precedent that is not welcome in Scotland. It is argued that we should increase the starting pay of physicists to make the job attractive. However, we should do that for all physicists in the NHS.
I agree entirely. I am not saying that one measure should be traded off against another. Rather, we should seek to raise salaries and improve career prospects for the whole staff group.
Towards the end of your written submission, you make a number of recommendations to the Scottish cancer group and the Scottish Executive about grade A and grade B physicists. Have any of the recommendations been implemented or listened to?
No. That information was submitted to the Executive in April and the Executive confirmed receipt of it. However, there is no plan to implement anything. My point is that we need to take a strategic look at the recommendations. We need the Executive to consider the recommendations and try to implement them for our staff group.
Is there any indication of an Executive response? Is a timetable expected?
I am not aware of that. I have not heard anything.
So the recommendations have just disappeared into the vast bureaucracy that is the Executive.
I would not necessarily say that. I say only that we have not had any response yet. I think that there are plenty of opportunities for regrading at the Beatson. My understanding is that that issue has been raised again. The grading recommendations come not only from a trade union perspective but from a professional group's perspective—Scottish radiotherapy physicists. Everybody is as one on the issue. We are all awaiting feedback from the Executive. Similar grading recommendations have been implemented by the National Assembly of Wales.
It has been done there.
The recommendations have been partly implemented there. The grade A posts have been increased.
Ah, well—that is excellent.
So there is a precedent and I hope that the Executive will follow that example.
I certainly hope so. Thank you.
Perhaps we will look into that.
I attended a men's health forum on Friday and I heard of brachytherapy for the first time. You must be quite unique, because you are a brachytherapy physicist.
It is not true to say that brachytherapy is available only at the Western general. It is available at the Beatson and at Dundee and Aberdeen. Inverness is too small to provide that service. You must realise that brachytherapy requires a certain expertise and a certain volume of patients to develop that expertise in order to provide an appropriate service. It is not automatic that every centre should provide a brachytherapy service.
Are you saying that everyone who would benefit from such treatment has access to it? How does the shortfall of 30 per cent in radiotherapy physicists affect treatment of patients in Scotland?
There are two aspects to that. In terms of the numbers, it depends on which model is applied. The 30 per cent figure comes from my professional body, the Institute of Physics and Engineers in Medicine. That figure is the institute's latest recommendation of the number of physicists for the work load in Scotland. However, different models give different numbers. The figure varies from 10 to 30 per cent in different models, so there could be a shortfall of approximately 10 jobs.
So we need a work force plan as well as a cancer plan.
Absolutely. That is what we are calling for. We should forget about absolute numbers such as 20 per cent or 30 per cent. To be honest, I think that the Executive does not have a role in telling each department that it will have X number of staff. That is a local management decision. However, the Executive has a role in ensuring that people are coming in at the bottom and that we stop losing people down to England or wherever.
I have a question for the RCN. In your written submission, you make a number of recommendations that relate to the education and work load of clinical nurse specialists—for example, monitoring case loads and including nursing standards in reports by the Clinical Standards Board for Scotland. Have any of those recommendations been put to the Scottish Executive? If so, have they been acted on?
Pat Dawson would need to answer whether the recommendations have been put to the Scottish Executive. They have certainly been discussed at a number of fora in which representatives of the Scottish cancer group have been involved and nurses on the Scottish cancer group are aware of how we need to move forward. The difficulty is that the development of strategic management for cancer nursing has largely been lacking in the past. For example, there is a group of lead cancer nurses in Scotland, which comprises four nurses. In England, there is a lead nurse for every network and every region. Lead nurses have no link whatever into the Scottish cancer group and no link into the Scottish Executive. Therefore, there is little strategic management of cancer nursing development across Scotland. Things happen locally that are not overseen nationally.
How can there be a managed clinical network if the lead cancer nurses do not link in?
The situation is confusing. I cannot answer that question, because I am not part of the managed clinical network system nor am I a lead cancer nurse in a clinical situation. There is on-going work. A lead cancer nurse has been appointed at the nursing and midwifery practice development unit and it is hoped that that will drive forward strategic nursing issues and that there will be closer links with the Scottish cancer group, but that has not happened yet.
Does the Scottish cancer group adequately represent all disciplines that are involved in the delivery of cancer care? If not, who else should be on the group?
The Scottish cancer group does not have radiotherapy physicist involvement, for example. It might be argued that everybody in the universe cannot be represented, which is true, but we perhaps do not have formalised paths for information. My submission says that we feel that we are a vital part of the team, but we are not always approached for information. Perhaps there is sometimes a lack of awareness of who we are. Developmental work is needed in that respect.
I echo that. There is significant medical dominance on the Scottish cancer group, which is at odds with how patient cancer services are delivered. There seems to be an imbalance in respect of the representation of those who are involved in delivering cancer care.
What should be done to improve cancer services in Scotland? What would your priority areas be?
That is just a small question.
I will answer from a nursing point of view. We would like a cohesive nursing strategy that is developed around patients. There should be a clinical focus that is driven by patient need and supportive care. There is definitely a need to improve recruitment into clinical trials and access to treatment, for example. Much of that could be achieved by using nurses much more creatively at the point of contact in primary care, acute cancer services and palliative care.
Does anybody else want to comment on where the gaps are?
Our written evidence contains suggestions. I want to follow on from what Nora Kearney said and the RCN's value nurses campaign by saying that we should demonstrate that we value nurses. Instead of having a lead doctor, let us have an identified lead nurse who works at strategic level to make the voice of nurses and the patients' agenda live issues in the planning process. They could work to ensure that issues such as work force education, multidisciplinary working, research and patient information, which has not yet been mentioned although it is crucial for nurses' communication role, are put on the agenda.
A point was made earlier about the fact that 68 per cent of people who are dying wish to die at home. Are nurses a key factor in ensuring that greater provision is made for aid to be given in the home to those who wish to remain there?
That is not an area I know terribly well. This morning, we have heard about patchy palliative care services, lack of integration and the key role that nurses can play in that regard. We have also heard about the generic skills that are needed in the palliative care sector, not only in cancer care. Education is needed to support symptom control, whether that is through pain management or other systems, including chemotherapy administration or generalist support for palliation. We need all those things.
Did the nurse pay £3,000 to train in various areas including pain management?
Yes.
In one year?
Yes.
It is important to note that money was ring-fenced in the English cancer plan to consider the provision of generic palliative care education for district nurses. There was a recognition that district nurses did not have the skills to manage patients with cancer in the community. As we speak, that education process is about to start—it will come on stream in the next two months.
Lastly, are all those patients getting adequate pain relief?
No. There is overwhelming evidence that they are not and that their other symptoms are not well supported.
Does Terry Kehoe want to come in on the original question? Do you want to say what you would do if you could have your wish list fulfilled?
I want to emphasise that I am a practising radiotheraphy physicist, which means that I am heavily involved in treatment. However, colleagues of mine and medical physicists who are in the diagnostic field say that, if we are to bring about earlier diagnosis of cancer, we will need access to other equipment. Physicists are involved in computed tomography, magnetic resonance imaging and with positron emission tomography scanners, which are not yet available in Scotland. They take a primary role in developing that tool to address clinical need. We should not lose sight of that, as we need to talk about not only treatment but diagnosis.
In order to improve cancer services, we need to implement the research knowledge that we have to date. The problem is that that knowledge is not implemented clinically. We could shift things very quickly if we were to implement the existing research knowledge in clinical practice within a short time.
That is a good link, because we will talk to someone from Cancer Research UK next. I thank the witnesses for their oral and written evidence and for their on-going work.
How have things changed in cancer research since the introduction of the cancer plan, if they have changed at all?
One of the issues that we raised the last time that we presented evidence to the committee was that a lot of the standard service care was being provided by clinicians who were funded by the Cancer Research Campaign and the Imperial Cancer Research Fund, as they were then. I can speak mainly for the south and east of Scotland, as that is where I work. In that area, there has been an expansion in the number of NHS consultants, so service provision will be by those people. I hope that that will free up time for academics to perform clinical and basic laboratory research. It is early days, so we will have to wait and see whether that occurs.
What are the priorities for the cancer research agenda? How do you rank those priorities?
I am one member of the group of Cancer Research UK specialists in Scotland. I suspect that there is a danger that I would vote for my own area. Most of us feel that there needs to be an expansion in cancer research and that we should be looking at prevention and screening. We should also be considering translational research, where we take the developments from the laboratory and from clinical trials and apply them in clinical practice. My area of expertise is in new drug development and that is one area in which translating the results of clinical research into clinical practice is being seen as a potential block.
In the research work that is taking place throughout Scotland, is there a strategy to ensure that a consistent and complementary approach is being taken in each area so that you do not reinvent the wheel?
That is a good point. There may now be more strategic developments following the merger of the two major British charities. Previously, although the Cancer Research Campaign and Imperial Cancer Research Fund units interacted, they had separate funding and, to a certain extent, there was an element of competition between the organisations. Now that the two charities have merged, we are going through a busy period of sorting out the administrative details. I hope that once that period is over, there will be an opportunity for Cancer Research UK in Scotland to come together and have a more strategic approach.
Do you believe that, at some time in the future, that approach would benefit the patients whom you strive to serve?
Without a doubt. I would not be in the game if I did not feel that that was likely to happen. As I have said, although the research must be co-ordinated, there must also be a co-ordinated plan for translating the fruits of that research into clinical practice. That might cost money.
Most things do.
Your written submission suggests that the Scottish Executive should match pound for pound the funding that charities make available for research, on which you give some figures. Have you any information about how research spending in this country compares with spending in other countries?
As I said, I am one of Cancer Research UK's funded researchers in Scotland, so I do not have that information to hand. As has been said, we lag a long way behind the rest of Europe in spending on new cancer drugs. I suspect that our spending on cancer research is not as high as spending is in the United States, but I do not have the figures for you. I am sure that someone could provide them, if that would be useful.
How are cancer trials being integrated into the work of cancer services across Scotland?
In the south and east of Scotland—and I suspect in other regions, too—we are trying to base the organisation of clinical trials within the region, using the clinical networks as a basis. We are implementing a process in which we will develop research networks with adequate nurse and data management support in the peripheral units and cancer centres. That is an exciting development. We have heard numbers and figures, but we have not yet seen any tangible results and it is not quite clear what the structures will be. The different clinical networks might want slightly different structures for their research networks. Clearly that is something that we should consider. In Scotland, we should also have another group to consider how to translate research findings into the clinic.
When we visited the Beatson clinic earlier this month, we heard that it is estimated that it conducts the largest number of clinical trials on cancer in Britain. How important is the Beatson clinic to your work?
I did part of my training at the Beatson, so I am aware of the set-up, which is excellent. The Beatson is the second-highest recruiter to new drug therapy trials in the world. That is based on its large patient work load. Linking and collaborating with the Beatson is fundamental to what my organisation does. We are all members of the new drugs committees for Cancer Research UK and we collaborate on clinical trials. There should be an air of collaboration with others. As I said, the clinical research networks should perhaps be based on top of the existing clinical networks in the west, north and south-east. I see that as the way forward.
Do you have a view on the denial to most patients of certain cancer drugs, such as those for colorectal cancer, because of decisions made by the National Institute for Clinical Excellence and the Health Technology Board for Scotland? Obviously your work is at the start of research and eventually newer drugs will be produced. However, drugs are being denied to patients as a first-line treatment. Does your organisation have views on that?
The organisation takes the view that any developments that have been shown to be cost-effective and have been approved should be available in clinical practice. The situation in the south-east of Scotland is different, as sometimes even drugs that have been approved by the HTBS are not available to the clinicians who are treating colorectal cancer. I feel very strongly about that situation, which I believe we should sort out before we consider whether NICE has made the wrong decision about combination therapy. Future clinical trials must be designed in a way that will inform clinical practice, rather than simply as a means of getting the drug a licence, which can allow commercial pressures to take over. That is how I see the partnership between the clinical trials organisations and the Executive working in future developments. There must be some exit strategy if the trials that we perform are positive.
Are you indicating that non-prescribing in your area, the south of Scotland, is entirely due to the local health board or trust refusing to give the funding, or is there another reason?
The area drug and therapeutics committee assessed the data on Irinotecan and felt that there was insufficient evidence to recommend its routine clinical use. However, that is in the face of HTBS guidance and clinicians are therefore in a slightly difficult position. The difficulty is that there is no join-up between funding and the approval of drugs. When a drug is a completely new development and the health board is told that it has to find the money, the question that arises is where the money will come from. The local committee prioritises and assesses local clinical need and it may make a decision that is different from the national one. Unless funding follows the approval of new drugs, there will be postcode access differences. I use the word "access" rather than "prescribing", because it is the holders of the purse-strings who will not allow clinicians to use those drugs.
Do you think that the cancer plan provides a balance across prevention, detection, treatment and care? If not, can you describe where you think there should be more emphasis?
That is not a question that I can answer. Professor Rankin, who unfortunately cannot be here today, might have been able to answer it more appropriately. We should clearly be looking at the early stages of cancer development and diagnosis in terms of prevention, screening and particularly radiological support. That is where we should be nipping cancer in the bud—before it develops into the metastatic disease where we have to use drugs and consider palliative care. We certainly need to focus on the early stages of cancer development—I am sure that my organisation does not need to bang the stop-smoking drum again. If we can have an impact on smoking, we will probably have a huge impact on cancer and perhaps a bigger impact than a lot of the research programmes that we are talking about.
On early diagnosis, do you think that GPs are adequately included in the managed clinical network in the system, given that they represent 90 per cent of patient contact with the NHS?
Again, I can only apologise. That document has come from the organisation as a whole and you will see that a number of people are listed in it as having specific interests. That is not an area of research in which I have been particularly involved, so it would be wrong for me to comment. I apologise for that.
Could the committee ask Cancer Research UK for a summary of Dr Campbell's research on patients in rural areas before we draw our own conclusions?
Yes. That would be okay.
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