APPENDIX 57
Memorandum submitted by Guy's and St Thomas'
Hospital Trust
WITNESSES:
Martine A Huit, RGN, BSc, Post Graduate Certificate
in Clinical Teaching (Australia), Lymphoedema Nurse Specialist,
Manual Lymph Drainage Therapist, 18 months experience in the field
of lymphoedema management, 17 years in nursing.
St Thomas' Hospital, Department of Palliative
Care, First Floor, South Wing, Block 6a, Lambeth Palace Road,
London SE1 7EH.
Wendy Harlow, Research Project Co-ordinator
in Oncology, Research and Development, 3rd Floor West Wing, Worthing
Hospital, Lyndhurst Road, Worthing BN11 2DH.
Jenny Veitch, RGN, Lymphoedema Nurse Specialist,
Manual Lymph Drainage Therapist, nine years experience in the
field of lymphoedema managment. 25 years in nursing.
Guy's Hospital, Department of Palliative Medicine,
Basement New Guy's House, St. Thomas' Street, London SE1 9RT.
INTRODUCTION
Cancer and treatment for cancer are the main
causes of lymphoedema[28]
in the Western world. Lymphoedema represents the ". . . end-stage
failure of lymph drainage . . ." (Mortimer, 1990:8), therefore,
it is a condition that cannot be cured. It is regretful to acknowledge
that "The physical and psychological impact of lymphoedema
is often compounded by the failure of health care professionals
to offer appropriate care." (Todd, 1998:230). In addition
current research into effective methods of treating lymphoedema
are not conclusive or consistent.
Although the knowledge base surrounding the
treatment of lymphoedema is expanding in the UK, evidence has
demonstrated that a lack of knowledge amongst health care professionals
is only one factor that affects patients' access to appropriate
treatment for this condition. In addition, too many interventions
in the management of lymphoedema are based on anecdotal evidence
and further research is necessary in many different areas (outlined
in this paper), if treatment methods are to be standardized, and
if high standards in care are to be achieved.
1. It is estimated that in the UK, 25 to
38 per cent of women who undergo treatment for breast cancer will
develop lymphoedema (Kissin et al 1986).
2. The incidence of lymphoedema following
treatment of other cancers in the UK is not known, but patients
are referred to lymphoedema clinics with facial, midline and leg
oedema (swelling) following diagnosis/treatment for cancer.
3. The incidence of onset of lymphoedema,
in the UK following invasive investigations of patients who were
in the "at risk" category of developing this condition,
secondary to treatment for cancer, is not known.
4. The Department of Health doe not have
figures on the incidence of lymphoedema in the UK, nor does it
possess guidelines on current best practice for the treatment
of this condition.
5. Lack of knowledge amongst health care
professionals is cited as one for the main causes of late referral
and/or inappropriate treatment of lymphoedema (Todd, 1998). This
has implications for patients and their family members, members
of the multi-professional health care team and the long-term financial
cost to the NHS and the community.
6. Members of "The British Lymphology
Society (BLS) Research Forum"[29]
meet on a quarterly basis. Wendy Harlow and John Sitzia, (researchers
at Worthing Hospital), are currently working in conjunction with
BLS to conduct a "National Survey of Priorities" amongst
health care professionals working in lymphoedema management. The
potential benefits that could be derived from conducting more
extensive research in the field of lymphoedema management, (including
a survey amongst patients), have been discussed. Lack of resources,
including funding, continues to be the main barrier restricting
developments in research. A dedicated team with experience in
cancer research could use their expertise to gather and collate
information and data from the 213 Lymphoedema Clinics that exist
throughout the UK.
7. Conducting research is necessary if there
is to be:
(i) Improvement in access to appropriate
services for patients who have developed lymphoedema as a consequence/secondary
to treatment for cancer.
(ii) Co-ordination of services with better
use of available resources.
(iii) Reduction in the amount of money spent
in the long-term on patients with lymphoedema if education amongst
health care professionals is addressed. This is because early
referral to appropriate services, where patients receive appropriate
treatment and advice can reduce long-term complications, and therefore,
cost in terms of physical and psychological distress to the patient
and financial cost to the NHS. Early appropriate intervention
may also increase the likelihood of patients being able to manage
their condition at home, without the need for repeated periods
of treatment in out-patient departments.
(iv) Improvement/standardisation in the treatment
offered by lymphoedema therapists, basing practice on sound scientific
evidence.
8. Current treatment/management programmes
for patients with lymphoedema, that has developed secondary to
cancer/cancer treatment, needs to be validated through appropriate
scientific research. To date, insufficient data is available in
numerous areas, including:
(i) Assessment and treatment of skin conditions,
including acute inflammatory episodes.
(ii) Musculo-skeletal problems.
(iii) Range of movement and mobility.
(iv) The role of exercise in the treatment
programme.
(v) Psychological and social issues for patients.
(vi) Incidence and prevalence of lymphoedema
following treatment for cancer.
(vii) The role of manual lymphatic drainage.[30]
(viii) Level of knowledge amongst health
care professionals about lymphoedema.
(ix) The selection and use of compression
hosiery.[31]
(x) Recurrence of disease in patients with
lymphoedema.
(xi) Exacerbation of lymphoedema following
invasive investigations.
(xii) Onset of lymphoedema following invasive
investigations on patients in the "at risk" category.
CONCLUSION
Patients attending the lymphoedema clinic with
a history of cancer frequently present with multiple, complex
health problems. Access to appropriate services and appropriate
treatment can help to control swelling, reduce the risk of associated
complications developing, including psychological distress. Further
research is required to support current theories, including the
psychological impact this condition has on patients, if optimum
standards in the treatment of patients and standardisation in
practice are to be achieved. Funding cancer research in this area
has the potential for far reaching consequences throughout the
UK. In addition, it is envisaged findings would also be of interest
internationally.
REFERENCES:
Fentem PH (1990) Defining the compression provided
by hosiery and bandages. CARE Science and Practice 8(3):53-55.
Foldi E, Foldi M, Clodius L (1989) The lymphoedema
chaos: A lancet. Annals of Plastic Surgery 22 (6):505-515.
Kissin MW, Querci della Roveret G, Easton D
and Wesbury G (1986) Risk of lymphoedema following the treatment
of breast cancer. British Journal of Surgery 73:580-584.
Mortimer P (1990) Investigation and management
of lymphoedema. Vascular Medicine Review 1:1-20.
Mortimer P (1995) Managing lymphoedema. Clinical
and Experimental Dermatology 20:98-106.
Mortimer P (1997) Strategy for Lymphoedema Care,
British Lymphology Society.
Todd JE (1998) Lymphoedema—a challenge
for all healthcare professionals International Journal of Palliative
Nursing 4(5):230-239.
12 June 2000
28 Lymphoedema is chronic swelling that develops in
one or more anatomical regions of the body. Lymphoedema cannot
be cured but can be controlled with appropriate treatment and
patient compliance (Mortimer, 1990). Back
29
"The British Lymphology Society is a multi-disciplinary
group of health care professionals and other interested parties
directly involved in promoting the management of lymphoedema or
interested in furthering the work of the society." Mortimer
P (1997). Back
30
Manual lymphatic drainage is a specialised technique that stimulates
lymph drainage through collateral pathways and removes protein
from the interstitial spaces (Foldi, 1985). Back
31
Compression hosiery are garments that have a compression value.
That is, they have an elasticity that makes it possible to fit
them around a limb, allowing full range of movement with a graduated
compression exerted when worn (Fentern, 1990). This external pressure
helps to limit swelling and stimulates flow of lymph towards the
root of the limb (Mortimer, 1995). Back
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