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Bath and North East Somerset
Community Health and Care
Services:
Lymphoedema Nursing
SD35
1.
Introduction
Lymphoedema is a chronic (long term) condition that causes swelling in the body’s
tissues. It can affect any part of the body, but usually develops in the arms or legs.
Other symptoms of lymphoedema can include an aching, heavy feeling in affected
body parts and difficulty moving them
Lymphoedema is caused by a problem with the lymphatic system. This is a network
of vessels and glands distributed throughout the body. Its major functions are helping
to fight infection and drain excess fluid from tissues.
Abnormal development of the lymphatic system, damage to it, and/or an increase in
fluid in the body tissues can all lead to lymphoedema.
There are two main types of lymphoedema:

primary lymphoedema – caused by faulty genes affecting the development
of the lymphatic system; it can develop at any age, but usually occurs in early
adulthood

secondary lymphoedema – caused by damage to the lymphatic system or
problems with the movement and drainage of fluid in the lymphatic system,
often due to an infection, injury, cancer treatment, inflammation of the limb or
a lack of limb movement
There is no cure for lymphoedema, but it is usually possible to control the main
symptoms using techniques to minimise fluid build-up and stimulate the flow of fluid
through the lymphatic system
The build-up of fluid in the tissues of people with lymphoedema means they are
more vulnerable to infection.
2.
Purpose
The current service works with adults with mild and uncomplicated cancer-related
and non cancer related lymphoedema, in order to optimise their physical,
psychological and social wellbeing, reduce and prevent complications and enable
them to remain active both at home and in the community. Promote independence,
self care and self management with service users, and carers, health and social care
practitioners.
Promote health and psychosocial wellbeing.
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2.1 Aims and Objectives
The aim of the service is to improve the mobility, movement, independence and
social engagement of people with lymphoedema by providing individual plans of care
that foster self-management and improve quality of life. It is also to develop
partnership with patients at risk of or with lymphoedema (involving relatives or carers
where appropriate).
Objectives:
3.

To support health and social care practitioners in their management and
monitoring of individuals at risk of or with lymphoedema and related
problems, in peoples homes or within GP practices.

To provide preventative and active holistic care in outpatient clinics and in
peoples’ homes that is planned, proactive and seamless, to avoid crises for
individuals with lymphoedema.

To provide formal education sessions for healthcare practitioners

To promote the objectives of health improvement e.g. stopping smoking,
weight management

To take into account the wider needs of the patient, such as psychosocial, by
referring on to the appropriate practitioner.
National/local context and Evidence base
Research suggests that over 200,000 people in the UK may be living with
lymphoedema.
Secondary lymphoedema has been shown to affect approximately one in five women
after breast cancer treatment.
Primary lymphoedema is less common than secondary lymphoedema, and is
estimated to affect around one in every 6,000 people.
4.
The policy context
Practice will be underpinned by best practice standards and the guidelines of the
national professional body The British Lymphology Society (BLS) and the national
patient organisation The Lymphoedema Support Network (LSN).
National Institute for Health and Care Excellence (NICE) Guidance.
5. Service Delivery
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5.1
Service Model
The service is based on the DOH generic Long Term Conditions model which is
illustrated by the Kaiser Permanante Model
Providers – Generalist & Specialist
British Lymphology Society classification of patient
DH
SPECIALIST
Groups
3+4
RUH
Level 3
Case
Management
High
Complexity
LNS / ALNP
CHSCS
TVN
LN - DH
SPECIALIST – AS ABOVE & GENERALISTS WITH
ENHANCED SKILLS
2+3
Lev el 2
LN - DH
* Some community matrons , community nurses,
Practice nurses –
Disease Specific Case Management
High Risk
1+2
Site specif ic cancer nurses - RUH
Palliativ e & Care Team - RUH
GENERALIST WITH ENHANCED
SKILLS AS ABOVE & GENERALIST
Lev el 1
Self-Care Support / Management
70-80% of Long Term Condition Population
DH
All
Health
Prof essionals
RUH
Community
At present the service sees everyone within this model. The education programme
has enabled some community nurses to manage the patients in level one and to
jointly manage, with the specialist nurse, patients in level two. The most complex
require the skill of the specialist nurse and treatment is intensive.
The B.L.S classification of population needs defines the patients the service works
with. i.e. those at risk, those with mild and uncomplicated oedema and those with
moderate to severe to complicated oedema.
The service is provided to patients in their own home and clinic setting. A specialist
assessment is completed which informs the care plan and programme of care. The
length of the service provision will depend on the patient’s needs. For patients whose
condition has stabilised, care will transfer to the community teams or practice nurse.
Patients with cancer and lymphoedema will have their needs assessed by the
hospice team or secondary care.
There is a referral criteria and referral form. Any health professional can make a
referral.
Management of lymphoedema is usually through bandage regimes/garments and
lymphoedema drainage.
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.
Garments are measured and fitted by the service.
Patients are referred by a relevant health professional to the lymphoedema service
based at Paulton Hospital. They are offered an appointment to be assessed /
diagnosed either at home or in the outpatient clinic. A treatment plan is mutually
agreed. They then either go into an intensive treatment pathway or into a
maintenance / monitoring pathway or are seen and discharged to self manage.
The intensive treatment pathway is therapist led and can vary from short term to
longer term, i.e. weeks or months. It may be a combination of bandaging, manual
lymphatic drainage, skin care, exercise, and lifestyle support.
The maintenance pathway is patient led, and designed to keep them stable and
controlled and moving towards being more self sufficient.
If intensive treatment is required, patients with cancer would be referred to the RUH
Lymphoedema service. If a patient’s needs become palliative they are referred to
Dorothy House Hospice.
Alternatively, following a series of follow up and evaluation patients reach a point
where they are self managing and can be discharged.
Service Development - Opportunities and Issues to be addressed
Ensure that people have co-ordinated single assessment and single plan when
linked with other conditions and needs
Single pathway linked with secondary care
6.
Whole system relationships
The service receives referrals from GPs and allied health professionals in both the
hospital and community. Collaborative care is provided with district nurses, matrons,
and practice nurses and the Tissue Viability Service. Referrals to other professionals
may be appropriate including social care as Lymphoedema has great social
challenges. Dietician input is required for weight challenge.Working collaboratively
with community nurses ensures continuity of treatment.
7.
Interdependencies and other services
Links with community teams
The Lymphoedema nurse links with other specialist nurses i.e Heart Failure nurse,
Diabetes nurse, Parkinson’s nurse, MS nurse, Continence Nursing, Specialist Stroke
nurses, IV nursing, Tissue viability nurse, Respiratory nursing, as part of a range of
specialist nursing interventions provided in community settings
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