Select Committee on Health Written Evidence


Memorandum by Hull and East Yorkshire Hospitals NHS Trust (PC 19)


  1.1  In the last twenty years, there has been increasing awareness of the emotional demands made by the diagnosis and treatment of cancer. This is recognised in the National Cancer Plan which emphasises the need to provide appropriate support, as well as the most effective treatments.

  1.2  In the last decade or so, cancer charities and the NHS have made a considerable investment in information and support services, particularly information centres and clinical nurse specialists. In view of this investment, one might expect that distress and psychological morbidity in patients with cancer would have reduced markedly.

  1.3  Unfortunately, the evidence does not support such a conclusion. Twenty-five years ago, Maguire and colleagues found (in Manchester) that between a quarter and a third of women experienced clinically significant anxiety, depression, and/or sexual difficulties in the year following surgery. This compares favourably with the findings of a more recent study of 269 women with early breast cancer: 49.6% were clinically anxious and 37.2% were clinically depressed in the first three months after the diagnosis (Hall et al, 1999).

  1.4  Current high levels of morbidity are not restricted to breast cancer. In a study of 987 patients with newly diagnosed inoperable lung cancer participating in multicentre Medical Research Council trials, 33% had clinically significant depression, which in many cases was persistent (Hopwood and Stephens, 2000). Finally, in a large study of 2,297 patients with various types of cancer attending outpatient clinics in 34 cancer centres in the UK, 36% were suffering from clinically significant distress as assessed by a validated questionnaire. (Fallowfield et al, 2001).

  1.5  These, and other studies, suggest that something has gone fundamentally wrong with the recent development of psycho-social support services throughout the UK.


  2.1  A number of factors of have been shown to be associated with effective coping (Walker, Walker and Sharp, 2003b; Walker, in press). These include appropriate information, good social support, active coping, good relationships with staff and having few, rather than many, unresolved concerns (Paraskavaidis et al, 1993; Walker, in press).

  2.2  Accordingly, fifteen years ago (in Aberdeen), we established a unit that was designed to facilitate effective coping. Members of staff were trained to identify and respond appropriately to the informational needs of patients and their families. Patients were welcome to telephone or "drop in" to the unit at any time during normal working hours. In this way, we tried to ensure that concerns did not develop into distress, and that distress did not become clinically significant disorder. We cultivated a professional, informal atmosphere which provided the context for staff support, as well as peer group support. Patients who were interested in self help were offered guidance in the use of relaxation training and guided imagery. The unit was an integrated part of the breast and colorectal surgical oncology ward, and the patients received chemotherapy in the unit under the supervision of a consultant medical oncologist. We strove to provide a highly patient-centred service, and functional and geographical information made this considerable easier than it would have been otherwise.

  2.3  We evaluated the impact of this unit in a series of 96 women with newly diagnosed locally advanced breast carcinoma. They all received neo-adjuvant chemotherapy, surgery, hormone therapy, and radiotherapy (Walker et al, 1999). The women completed various psychometric tests and quality of life questionnaires, and they were all given a standardised clinical interview in order to establish clinically significant distress using internationally agreed criteria. They were assessed at 12 time points over a period of 37 weeks, beginning three days before commencing neo-adjuvant chemotherapy. At the first time point, 21% scored eleven or above on the anxiety sub-scale of the Hospital Anxiety and Depression Scale (this is usually taken to indicate clinically significant anxiety). Although this may seem high, community surveys that we had previously undertaken of women in the North East of Scotland had consistently found a point prevalence of 15-25% on this subscale, indicating that these women with newly diagnosed breast cancer were under "stress" but were not particularly clinically "distressed". Eighteen weeks later, having had six cycles of chemotherapy, and whilst awaiting surgery, the point prevalence had fallen to 5%, much lower than at the time of diagnosis, and much lower than in the so called "healthy" female population of North East Scotland. Thirty-seven weeks after the diagnosis (twelve weeks after the end of radiotherapy) the point prevalence had fallen further to only 2%. Structured clinical interviews confirmed a very low rate of psychiatric morbidity (Walker et al, 2003a).

  2.4  These figures contrast markedly with those reviewed earlier. They suggest that, with appropriate staff training, support and supervision, and a service that is functionally and geographically integrated, most psychiatric morbidity can be prevented. Indeed, patients may actually become mentally healthier than their community peers.


  3.1  A widely reported problem with information and support services within the UK generally is that these are used disproportionately by women with breast cancer. For example, a survey of clients accessing cancer back up, the Macmillan Linda Jackson Centre and the Richard Dimbelby Centre found that only 23-29% of those contacting those services were male (Williams et al 2000). Non-equity of use was also found by Boudioni et al (2000) who found in a series of 384 clients who had booked an appointment with the CancerBACUP Counselling Service that most of the clients were young, middle class, women. These findings give a clue as to why the incidence of morbidity remains so high—information and support services are used mainly by self-selected, and atypical, groups of patients. Equity of use, rather than equity of access, remains a major challenge.


  4.1  Four years ago, in Kingston upon Hull, we established an Oncology Health Service based on the model that we had developed in Aberdeen (Walker et al, 2003b). The aims of the service are:

    —  to prevent psychological problems and enhance quality of life,

    —  to provide a high quality, integrated, evidence based, multidisciplinary clinical service for in patients and out patients with any type of cancer, and their families,

    —  to provide the opportunity to learn self-help techniques such as relaxation and guided imagery,

    —  to carry out research into psycho-social aspects of understanding and treating cancer,

    —  to work closely with others involved in psycho-social support and to offer them clinical supervision and other opportunities for professional development,

    —  to provide local and national training programmes.

  4.2  Two Centres have been established. The original Centre is at the Princess Royal Hospital (East Hull) which is where all the radiotherapy and most of the chemotherapy are administered. The second Centre, which opened almost two years ago, is at Castle Hill Hospital (West Hull) where most of the surgical oncology is undertaken and the remainder of chemotherapy is administered (apart from chemotherapy for haematological malignancies).

  4.3  Any patient who has had, or is undergoing, treatment for any type of cancer locally is welcome to access the services, as are their families. They can attend with, or without, an appointment as they prefer. In addition, healthcare professionals in hospital or in the community can refer patients and relatives about whom they have clinical concern. The Centres are open Mondays—Fridays, 9am until 5pm.

  4.4  Many patients and relatives obtain support and advice by telephoning the Centres; they can receive continuity of care by speaking to members of staff whom they have previously met. Telephone support can be especially helpful when patients are feeling unwell or are otherwise unable to travel. Last year, we established weekly Oncology Health Research Clinics (with drop in facilities) in Scarborough and Grimsby, and we are currently exploring other ways of extending services locally within the Network.

  4.5  Evidence-based interventions are offered to help with clinically significant anxiety and depression, sexual difficulties, fatigue, adjustment problems, phobic difficulties that are interfering with treatment, and other cancer-related distress.

  4.6  The unit is staffed by specially trained behavioural oncology nurses and by clinical psychologists. The behavioural oncology nurses staff the drop-in Centres as well as providing a consultation service for some of the patients who have been referred. The two Centres are managed as a single unit: members of staff spend time each week in both Centres. Currently we employ four part-time clinical psychologists, a research co-ordinator, seven behavioural oncology specialist nurses, two nursing assistants, two research therapists, and two clinical secretaries. In addition, a trained Welfare Rights Officer holds regular clinics in both Centres. Most members of staff are funded by the NHS; the remainder are funded from research grants.

  4.7  The locations of the Centres were chosen with great care to ensure that they were integrated physically, as well as functionally, with as many other aspects of the cancer services as possible. The Centre at Princess Royal Hospital, for example, is based immediately adjacent to the Radiotherapy Department which in turn is adjacent to the Chemotherapy Department. This means that consultants, nursing staff, and radiographers can easily bring patients to the Centres to introduce them personally to the Oncology Health Centre staff. Reciprocally, it means that Centre staff can take patients through to the other departments to resolve particular concerns on the spot.

  4.8  The structure and functions of the service are shown in Figure One (Not Printed).


  5.1  Nine months after the first Centre opened, a consecutive series of 51 patients and 38 relatives who had visited the Centre at least once completed anonymously a Satisfaction Questionnaire. On average, they had visited the Centre seven times. They agreed unanimously that the Oncology Health Centre provided a unique dimension of care; that staff understood and responded helpfully to their concerns; that they had received a warm welcome, and that they had found it useful to talk with the nurses in the Centre. A survey of referrers also indicated a very high level of satisfaction with the service offered.

  5.2  We audited the first 856 patients who attended the original centre at Princess Royal Hospital. Thirty-five per cent of the patients were male and only 32% had breast cancer. In contrast to other centres, we found that the majority (58%) of our patients came from the two most socio-economically deprived groups. Now that the second centre has been running for two years, we are carrying out a further audit. Most of the chemotherapy for lung cancer and colorectal cancer is carried out adjacent to the second centre and we expect that the proportion of patients with these diagnoses, and a proportion of men, will show a significant increase. The Hull approach to service configuration appears to enhance greatly equity of use.

  5.3  In total, last year, 1,524 new patients with cancer attended the Centres. Seven hundred and eighty eight attended as "drop ins" and 736 were referred. This represents 61% of all new patients with cancer diagnosed in the area. In addition, we saw numerous partners. In a typical week, approximately 250 patients and relatives attend.


  6.1  Staff burn out has been well documented in cancer professionals (eg Ramirez et al, 1995). At their request, the two consultant clinical psychologists provide regular clinical supervision and staff development for thirty-seven clinical nurse specialists. Many of these are Macmillan post-holders. Supervision is provided in groups of four to eight people. Participants can discuss the management of particular cases, or can address inter-professional and organisational issues that are causing concern. In addition, some of the groups have requested didactic teaching from time to time.


  7.1  Whilst it is to be hoped that significant additional financial resources will be invested in psycho-social support services in the future, we believe that the experience of the last twenty-five years has shown that the impact of this is likely to be limited unless careful attention is given to integrating support services, functionally and physically, with other aspects of cancer provision.

  7.2  We believe that the Hull model promotes high quality patient-centred care; encourages equity of use; facilitates a beneficial dialogue between patients and health care professionals, and provides an excellent infrastructure within which to train and support staff. It could be used as a template for the support services in England and Wales.


  8.1  Further information about clinical work and research can be downloaded from the following URL:


  Boudioni M, Mossman J, Boulton M, Ramirez A, Moynihan C, and Leydon G (2000). An evaluation of a cancer counselling service. European Journal of Cancer, 9, 212-220.

  Fallowfield L, Ratcliffe D, Jenkins V, Saul J. 2001 Psychiatric morbidity and its recognition by doctors in patients with cancer. British Journal of Cancer, 20;84(8):1011-5.

  Hall A, A'Hern R, Fallowfield L (1999),Are we using appropriate self-report questionnaires for detecting anxiety and depression in women with early breast cancer? European Journal of Cancer, 35(1):79-85.

  Hopwood P, Stephens RJ. (2000) Depression in patients with lung cancer: prevalence and risk factors derived from quality-of-life data. J Clin Oncol. 2000 Feb;18(4):893-903.

  Paraskevaidis E, Kitchener H C and Walker L G (1993). Doctor-patient communication and subsequent mental health in women with gynaecological cancer. Psycho-Oncology, 2, 195-200.

  Ramirez AJ, Graham J, Richards MA, Cull A, Gregory WM, Leaning MS, Snashall DC, Timothy AR (1995). Burnout and psychiatric disorder among cancer clinicians. British Journal of Cancer, 71, 1263-9.

  Walker L G, Walker M B, Heys S D, Ogston K, Miller I, Hutcheon A W, Sarkar TK and Eremin O (1999a). The psychological, clinical and pathological effects of relaxation training and imagery during primary chemotherapy. British Journal of Cancer, 80, 262-268.

  Walker L G, Walker M B and Sharp D M (2003a). Psychosocial oncology services for women with breast cancer. Update in Urology, Gynaecology and Sexual Health, 8, 25-32.

  Walker L G, Walker M B and Sharp D M (2003b). The organisation of psychosocial support within palliative care. In M Lloyd-Williams (Ed). Psychosocial Issues in Palliative Care. Oxford University Press, Oxford. ISBN 0-19-851540-5.

  Walker L G. (in press). Hypnotherapeutic insights and interventions: a cancer odyssey. Contemporary Hypnosis.

  Williams E R L, Ramirez A J, Richards M A, Young T, Maher E J, Boudioni M and Maguire P (2000). Are men missing from cancer information and support services? Psycho-Oncology, 9, 364.


  This submission is based on a manuscript to be published in Macmillan Voice (Macmillan Cancer Relief).

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