APPENDIX 17
Memorandum by Hull and East Yorkshire
Hospitals NHS Trust (PC 19)
1. INTRODUCTION
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. PREVENTION
OF DISTRESS
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. INEQUITY OF
USE OF
SUPPORT SERVICES
NATIONALLY
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. ESTABLISHMENT
OF A
PATIENT-CENTRED
SERVICE
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. QUALITY OF
SERVICE AND
QUALITY ASSURANCE
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. STAFF DEVELOPMENT
AND SUPPORT
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. CONCLUSIONS
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. FURTHER INFORMATION
8.1 Further information about clinical work
and research can be downloaded from the following URL: http://.www.lgwalker.com.
9. REFERENCES
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.
10. ACKNOWLEDGEMENT
This submission is based on a manuscript to
be published in Macmillan Voice (Macmillan Cancer Relief).
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