Lymphoedema Network Northern Ireland
Stormont meeting with MLAs
30th September 2008
Lymphoedema is a chronic, incurable tissue swelling due to failure of the lymph drainage
system. It can occur as a congenital condition (primary) or be caused by trauma e.g. cancer
surgery/radiotherapy (secondary). It can be managed by specialist care but if untreated, it will
worsen resulting in physical, social and psychological problems, increased infection rates and
hospital admissions.
One sufferer claimed “lymphoedema is a life sentence not a death sentence”.
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2274 people in Northern Ireland suffer from this condition;
this is an underestimation: many cases are not diagnosed due to a general lack of
lymphoedema awareness or to incorrectly coded medical care
as a chronic condition, its prevalence rates are greater than its incidence;
life long management is required including daily use of expensive containment garments
(and prescribing costs).
Early diagnosis and specialist treatment (daily therapy for up to 6 weeks) will result in more
favourable physical and psychological outcomes for the patient. This will also require fewer
resources and reduce the risk of infection and associated hospital admissions. The ideal is
therefore to have pre/post surgery screening for “at risk” patients (e.g. breast cancer) and
locally accessible treatment centres throughout the Province.
In 2002 a committee was formed by the Chief Medical Officer to review and report on
lymphoedema services in Northern Ireland; this identified:
 minimal service provision for cancer patients(only in Cancer Centre and Units);
 no service for primary lymphoedema patients;
 no access for either group in the Sperrin and Lakeland area.
The published report (2004) suggested that:
 £1.26 million was required to address the inequality and begin to raise local standards to
international levels
 the development of CREST guidelines and of a managed clinical network to co-ordinate
and develop a high quality equitable regional service;
 development of high quality, locally accessible and equitable regional clinical services
To date, we have been awarded £0.5 million which has allowed the creation of the network,
education/communication initiatives, clinical leads for each trust and basic therapy support.
However, staffing levels are still poor with many trusts having less than 2 full time dedicated
staff covering their whole trust area. The success of the network and guidelines at raising the
profile has however resulted in increasing referrals rates. This, combined with pre-existing
staffing problems has not improved access or care for the patients.
LNNI would like to request that the Committee support:
 their endeavors to secure further funding to realise the full recommendations of the
DHSSPS 2004 report;
 the regional campaign to abolish prescription charges inline with Scotland
Physiotherapy Department, The Belvoir Park Suite, Cancer Centre
Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB
Telephone: 028 9069 9369
Email:
jane.rankin1@belfasttrust.hscni.net
debbie.schofield@belfasttrust.hscni.net