Consultant editor
Nina Linnitt
Clinical Training Manager Medi UK Ltd
Editorial board Rebecca Elwell
Lymphoedema Nurse Specialist, University Hospital of North Staffordshire
Tracy Green
Macmillan Lymphoedema Clinical Nurse Specialist, Calderdale Royal Hospital, Calderdale & Huddersfield NHS Trust
Teresa Hill
Macmillan Lymphoedema Clinical Nurse Specialist Enfield
Ria Lewis
ITORIAL PROJECT MANAGER Macmillan Lymphoedema Rehabilitation Physiotherapist hy Day
Singleton Hospital, Swansea
B-EDITOR uise Roberts
Fran Worboys
Tissue Viability Clinical Nurse Specialist Tower Hamlets PCT
SIGNER ne Walker
BLISHING DIRECTOR Editor ne Jones
Rowan Dennison
Commercial Manager MEDICAL EDUCATION PARTNERSHIP LTD,
05
Andrew Wright
Publishing Director
Anthony Kerr
BLISHED BY Managing Director dical Education Partnership Ltd Associate Publisher Hargrave Road, London N19 5SH, UK +44 (0)20 7561 5400 ail: [email protected]
Jon Benson Julie Smith
INTED BY ng Print Services, UK
REIGN EDITION TRANSLATIONS WS Group (Medical Division), UK
In association with
ROPEAN WOUND MANAGEMENT SOCIATION (EWMA) cretariat: PO BOX 864, London SE1 8TT, UK +44 (0)20 7848 3496 Web: www.ewma.org
IS DOCUMENT IS SUPPORTED BY
e Lymphoedema mework (UK)
ish Lymphology ciety
© 2015 St Jude’s Church, Dulwich Road, London, SE24 0PB (Tel: 020 7738 5454) All rights reserved. No part of British Journal of Community Nursing may be reproduced, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, photocopied or otherwise without prior written permission of the Publishing Director. Printed by Pensord Press Ltd, Blackwood, Gwent, NP12 2YA
Chronic Oedema April 2015
Getting it right for children
L
ymphoedema in childhood is relatively rare, but it can have a significant impact on both the child and the family. Many forms of childhood lymphoedema are inherited with identified genes (e.g. Milroy disease). In some cases, genetic mutations can result in syndromes where lymphoedema is only part of the clinical picture (e.g. Turner syndrome). Occasionally, the lymphatics of the internal organs are affected, causing associated problems such as loss of proteins and fat-soluble vitamins if the lymphatics of the gut are involved. Children with lymphoedema can face an array of physical and psychological difficulties, including altered body image, feelings of isolation, and low self-esteem (Harding, 2012). Failure of professionals to diagnose, refer to the appropriate specialty, or admit lack of knowledge causes helplessness and frustration for parents. Like other childhood chronic illnesses, services should be delivered in child-orientated clinical environments by advanced practitioners who have the skill and expertise to assess and address the broad spectrum of needs of both the child and the family unit (Todd, 2010). Unfortunately, there are few health professionals with experience of diagnosing and treating lymphoedema in children, resulting in a dearth of services where this is achieved. This prompted the development of the Children’s Lymphoedema Special Interest Group (CLSIG) consisting of a small number of dedicated lymphoedema practitioners who regularly see children in services throughout the UK, all of whom self-fund travel and accommodation expenses to meetings and events. Much of the work is carried out in the members’ own time. The aims of the group include producing a charter for children with lymphoedema that would recommend minimum standards of care, developing a diagnostic/assessment pathway to ensure children receive an appropriate clinical diagnosis, and providing a fun and informative day for children and their families to come together. This well-evaluated event has been run on two occasions and has allowed the children to meet others with similar problems, participate in games while the parents chat, and gain inspiration from presentations by some young adults who have coped with childhood lymphoedema. Ultimately, the CLSIG is striving to improve the experiences of children with lymphoedema in the UK to ensure that diagnosis and treatment is initiated promptly following the development of swelling. Initiating good treatment and supportive practices in the child’s early years will foster positive coping strategies throughout childhood and the transition into adulthood. BJCN Harding JE (2012) The experiences of young people with primary lymphoedema. Br J Community Nurs 17(10)(supp): S4–S11 Todd J (2010) Lymphoedema services for children and young people. J Lymphoedema 5(2): 68–73
Marie Todd Clinical Nurse Specialist in Lymphoedema, Glasgow Specialist Lymphoedema Service and Chair, Children’s Lymphoedema Special Interest Group S5
Journal of Community Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 15, 2015. For personal use only. No other uses without permission. . All rights re
Nina Linnitt
Clinical Training Manager Medi UK Ltd
Editorial board Rebecca Elwell
Lymphoedema Nurse Specialist, University Hospital of North Staffordshire
Tracy Green
Macmillan Lymphoedema Clinical Nurse Specialist, Calderdale Royal Hospital, Calderdale & Huddersfield NHS Trust
Teresa Hill
Macmillan Lymphoedema Clinical Nurse Specialist Enfield
Ria Lewis
ITORIAL PROJECT MANAGER Macmillan Lymphoedema Rehabilitation Physiotherapist hy Day
Singleton Hospital, Swansea
B-EDITOR uise Roberts
Fran Worboys
Tissue Viability Clinical Nurse Specialist Tower Hamlets PCT
SIGNER ne Walker
BLISHING DIRECTOR Editor ne Jones
Rowan Dennison
Commercial Manager MEDICAL EDUCATION PARTNERSHIP LTD,
05
Andrew Wright
Publishing Director
Anthony Kerr
BLISHED BY Managing Director dical Education Partnership Ltd Associate Publisher Hargrave Road, London N19 5SH, UK +44 (0)20 7561 5400 ail: [email protected]
Jon Benson Julie Smith
INTED BY ng Print Services, UK
REIGN EDITION TRANSLATIONS WS Group (Medical Division), UK
In association with
ROPEAN WOUND MANAGEMENT SOCIATION (EWMA) cretariat: PO BOX 864, London SE1 8TT, UK +44 (0)20 7848 3496 Web: www.ewma.org
IS DOCUMENT IS SUPPORTED BY
e Lymphoedema mework (UK)
ish Lymphology ciety
© 2015 St Jude’s Church, Dulwich Road, London, SE24 0PB (Tel: 020 7738 5454) All rights reserved. No part of British Journal of Community Nursing may be reproduced, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, photocopied or otherwise without prior written permission of the Publishing Director. Printed by Pensord Press Ltd, Blackwood, Gwent, NP12 2YA
Chronic Oedema April 2015
Getting it right for children
L
ymphoedema in childhood is relatively rare, but it can have a significant impact on both the child and the family. Many forms of childhood lymphoedema are inherited with identified genes (e.g. Milroy disease). In some cases, genetic mutations can result in syndromes where lymphoedema is only part of the clinical picture (e.g. Turner syndrome). Occasionally, the lymphatics of the internal organs are affected, causing associated problems such as loss of proteins and fat-soluble vitamins if the lymphatics of the gut are involved. Children with lymphoedema can face an array of physical and psychological difficulties, including altered body image, feelings of isolation, and low self-esteem (Harding, 2012). Failure of professionals to diagnose, refer to the appropriate specialty, or admit lack of knowledge causes helplessness and frustration for parents. Like other childhood chronic illnesses, services should be delivered in child-orientated clinical environments by advanced practitioners who have the skill and expertise to assess and address the broad spectrum of needs of both the child and the family unit (Todd, 2010). Unfortunately, there are few health professionals with experience of diagnosing and treating lymphoedema in children, resulting in a dearth of services where this is achieved. This prompted the development of the Children’s Lymphoedema Special Interest Group (CLSIG) consisting of a small number of dedicated lymphoedema practitioners who regularly see children in services throughout the UK, all of whom self-fund travel and accommodation expenses to meetings and events. Much of the work is carried out in the members’ own time. The aims of the group include producing a charter for children with lymphoedema that would recommend minimum standards of care, developing a diagnostic/assessment pathway to ensure children receive an appropriate clinical diagnosis, and providing a fun and informative day for children and their families to come together. This well-evaluated event has been run on two occasions and has allowed the children to meet others with similar problems, participate in games while the parents chat, and gain inspiration from presentations by some young adults who have coped with childhood lymphoedema. Ultimately, the CLSIG is striving to improve the experiences of children with lymphoedema in the UK to ensure that diagnosis and treatment is initiated promptly following the development of swelling. Initiating good treatment and supportive practices in the child’s early years will foster positive coping strategies throughout childhood and the transition into adulthood. BJCN Harding JE (2012) The experiences of young people with primary lymphoedema. Br J Community Nurs 17(10)(supp): S4–S11 Todd J (2010) Lymphoedema services for children and young people. J Lymphoedema 5(2): 68–73
Marie Todd Clinical Nurse Specialist in Lymphoedema, Glasgow Specialist Lymphoedema Service and Chair, Children’s Lymphoedema Special Interest Group S5
Journal of Community Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 15, 2015. For personal use only. No other uses without permission. . All rights re
