British Lymphology Society: MLD Position Document – Origin and Development
09:15 - 09:45
The aim of the session is to increase understanding amongst conference attendees regarding the origin and development of this important position document. The document aim is to support care delivery and decision making when undertaking MLD with those diagnosed with lymphoedema.
Although there is very little evidence to support the use of compression for lipoedema patients, it is generally thought to be useful. In this presentation, Denise will discuss the various garments that may help improve quality of life for such patients.
Practical tips to support people with Genital Oedema
11:45 - 12:15
Men, women, and children need specific support and practical advice to get acknowledgment and treatment of genital oedema. However, most HCP are not trained to provide this support and rarely build up the experience to feel confident with it. The lack of knowledge leads to embarrassment and fear of saying or doing the wrong thing. This down to earth presentation looks at how HCP can help patients describe their problem, has practical advice that could be useful in reducing the distress this condition causes, and suggests which patients need lymphoedema specialist help or even surgery.
Differential diagnosis of chronic lower limb oedema / lymphoedema.
13:45 - 14:15
All cases of lower limb oedema occur as a result of abnormal drainage of lymphatic fluid. In other words, “all oedema is lymphoedema”. However, there are different causes for chronic oedema and these should be considered by the healthcare provider, as the cause may influence the patient’s management. Causes of chronic oedema include certain medications, venous disease, trauma, chronic inflammatory disease, or primary lymphoedema, but there are many more to be considered. This talk aims to provide an approach to assessing the patient with chronic oedema.
Getting the best from patient reported measures in lymphoedema care
15:15 - 15:45
This session will highlight the work undertaken with Lymphoedema Wales to develop and introduce patient and clinician reported measures. The session will showcase two different approaches to PROM collection using a clinic and longitudinal scenario and will focus on what else is needed to support PROM-led care. The session will also introduce the challenges of collecting Family Reported Outcome Measures and Patient Reported Experience Measures (PREMs). This will set the scene for supporting services and therapists to implement patient reported measures at the individual level and more widely within the Value-Based Healthcare initiative.
Exploring the psychological and psychosocial effects of facial disfigurement on the lived experience of head and neck cancer patients: a structed literature review (SLR)
15:45 - 16:15
Living with facial disfigurement following treatment for head and neck cancer causes significant difficulties in the everyday life’s of patients; physically, emotionally, psychologically and psychosocially. This structured literature review explores the lived experience of people affected by altered appearance. It highlights the importance of open dialogue with health professionals, access to information, social support and acceptance in enabling people to adjust to their changed appearance and reintegrating into society. In addition, given the improvement in survival it is important that healthcare professionals are educated to deal with the issues that affect the everyday lives of patients.
Rebecca is the Macmillan Lymphoedema Advanced Nurse Practitioner at the University Hospitals of North Midlands NHS Trust. She completed an Msc in Lymphoedema in 2012 and is a Leduc and Casley-Smith trained therapist. The service has a paediatric lymphoedema clinic held in Staffordshire Children’s Hospital, a community based service and in 2013 she opened the UKs only Red Legs clinic for patients with leg redness from a cause other than acute cellulitis. This has led to increased awareness of red legs and reduced hospital admissions. The Red legs pathway has been adopted by the British Lymphology Society (BLS) and endorsed by the National Legs Matter campaign.
She is a proud trustee of the BLS and their annual conference organizer (an event which attracts over 400 delegates). Rebecca has authored, developed and published the Society’s first 2 position papers for the application of compression in the absence of ABPI which has been used to underpin the lower limb recommendations of the National Wound Care Strategy and the management of lymphoedema in the presence of Deep Vein Thrombosis. She is also a member of the BLS’ Scientific Committee and the Children with Lymphoedema Special Interest group (BLSCLSIG) as well as being on the editorial board of the Journal of Lymphoedema and the British Journal of Community Nursing’s Chronic Oedema supplement.
Rebecca has won a number of awards including Chronic Oedema Nurse of the Year and BLS awards for innovation and raising awareness of lymphoedema amongst health care professionals.
Rebecca Elwell
Macmillan Lymphoedema ANP
UHNM NHS Trust
Rebecca is the Macmillan Lymphoedema Advanced Nurse Practitioner at the University Hospitals of North Midlands NHS Trust. She completed an Msc in Lymphoedema in 2012 and is a Leduc and Casley-Smith trained therapist. The service has a paediatric lymphoedema clinic held in Staffordshire Children’s Hospital, a community based service and in 2013 she opened the UKs only Red Legs clinic for patients with leg redness from a cause other than acute cellulitis. This has led to increased awareness of red legs and reduced hospital admissions. The Red legs pathway has been adopted by the British Lymphology Society (BLS) and endorsed by the National Legs Matter campaign.
She is a proud trustee of the BLS and their annual conference organizer (an event which attracts over 400 delegates). Rebecca has authored, developed and published the Society’s first 2 position papers for the application of compression in the absence of ABPI which has been used to underpin the lower limb recommendations of the National Wound Care Strategy and the management of lymphoedema in the presence of Deep Vein Thrombosis. She is also a member of the BLS’ Scientific Committee and the Children with Lymphoedema Special Interest group (BLSCLSIG) as well as being on the editorial board of the Journal of Lymphoedema and the British Journal of Community Nursing’s Chronic Oedema supplement.
Rebecca has won a number of awards including Chronic Oedema Nurse of the Year and BLS awards for innovation and raising awareness of lymphoedema amongst health care professionals.
Garry Cooper-Stanton
Deputy Head of School
University of Central Lancashire
Garry is currently a doctoral researcher undertaking his PhD with a focus upon men diagnosed with non-cancer related lymphoedema. He has presented his initial results from his systematic review and online survey at both national and international conferences. Alongside Garry's research he is works in both the academic and clinical setting. He is the Associate Dean within the School of Nursing and Midwifery at the University of Central Lancashire and continues to work as a Clinical Nurse Specialist in Lymphoedema. He has worked across several sectors, including, public (NHS (National Health Service), private (business) and charitable sector within primary care (community). In recognition of his commitment and passion to primary care he was awarded the title of Queen’s Nurse from the Queen’s Nurse Institute. Garry has authored several articles related to his specialist field and completed an MSc in this area. To this end his remains a passionate advocate for lymphology and the using of research to improve patients' quality of life.
Garry Cooper-Stanton
Deputy Head of School
University of Central Lancashire
Garry is currently a doctoral researcher undertaking his PhD with a focus upon men diagnosed with non-cancer related lymphoedema. He has presented his initial results from his systematic review and online survey at both national and international conferences. Alongside Garry's research he is works in both the academic and clinical setting. He is the Associate Dean within the School of Nursing and Midwifery at the University of Central Lancashire and continues to work as a Clinical Nurse Specialist in Lymphoedema. He has worked across several sectors, including, public (NHS (National Health Service), private (business) and charitable sector within primary care (community). In recognition of his commitment and passion to primary care he was awarded the title of Queen’s Nurse from the Queen’s Nurse Institute. Garry has authored several articles related to his specialist field and completed an MSc in this area. To this end his remains a passionate advocate for lymphology and the using of research to improve patients' quality of life.
Yolande Borthwick
Lymphoedema Specialist/ University Lecturer
Strathcarron Hospice/University of Glasgow
My clinical role is as a Lymphoedema Specialist in an out-patient clinic which is housed in a Hospice in Central Scotland where I have been based for nearly 20 years. I provide leadership for the lymphoedema service for the health board, which includes the support and management for anyone living with lipoedema and lymphoedema of any cause as well as service development and education.
My other role is as a part time lecturer at University of Glasgow where I am programme lead on the Graduate and Postgraduate Specialist Lymphoedema programmes offering accredited education from keyworker to specialist level along with an online introductory course. I am very proud to be Co – Vice Chair of the British Lymphoedema Society as well as being a very active member of the Scottish Lymphoedema Practitioners Network and a teacher with Casley Smith Lymphoedema Education UK.
My special interests lie in supporting a rehabilitative approach to these long term conditions including promoting supported self management and tailoring individual treatment through goal setting. We have developed a strong patient support group locally who are consulted in any service development or new project for their views. I am passionate about involving our patients in decisions and actively in our management plans as well as providing timely information and education to all health care professionals to enable a better understanding of lymphoedema and lipoedema.
Yolande Borthwick
Lymphoedema Specialist/ University Lecturer
Strathcarron Hospice/University of Glasgow
My clinical role is as a Lymphoedema Specialist in an out-patient clinic which is housed in a Hospice in Central Scotland where I have been based for nearly 20 years. I provide leadership for the lymphoedema service for the health board, which includes the support and management for anyone living with lipoedema and lymphoedema of any cause as well as service development and education.
My other role is as a part time lecturer at University of Glasgow where I am programme lead on the Graduate and Postgraduate Specialist Lymphoedema programmes offering accredited education from keyworker to specialist level along with an online introductory course. I am very proud to be Co – Vice Chair of the British Lymphoedema Society as well as being a very active member of the Scottish Lymphoedema Practitioners Network and a teacher with Casley Smith Lymphoedema Education UK.
My special interests lie in supporting a rehabilitative approach to these long term conditions including promoting supported self management and tailoring individual treatment through goal setting. We have developed a strong patient support group locally who are consulted in any service development or new project for their views. I am passionate about involving our patients in decisions and actively in our management plans as well as providing timely information and education to all health care professionals to enable a better understanding of lymphoedema and lipoedema.
Denise Hardy
Lymphoedema Nurse Consultant
Kendal Lymphology Centre
With a background in palliative care, lymphoedema has been a focal point in my nursing career for the last 33 years.
Having set up numerous clinics within the NHS, I have laterly established Kendal Lymphology Centre (KLC) - an independent clinic, providing NHS care for 2 Health authorities. We have seen over 4500 patients since it opened in 2005 and see patients suffering from all types of lymphoedema, lipoedema and children if necessary.
Receiving numerous awards over the years, the Chronic Oedema Nurse of the year award in 2019 was very special – as was the rating of “outstanding” following the recent Care Quality Commission inspection.
I have also written work for publication – the latest in conjunction with the Lymphoedema Support Network (LSN) entitled “Your Lymphoedema – taking back control”. Providing training and education is also important to me locally, nationally and internationally – Kenya particularly, educating Health Care Professionals to manage breast cancer related lymphoedema.
More information about our service can be found on our website: www.kendal-lymphology.co.uk
Denise Hardy
Lymphoedema Nurse Consultant
Kendal Lymphology Centre
With a background in palliative care, lymphoedema has been a focal point in my nursing career for the last 33 years.
Having set up numerous clinics within the NHS, I have laterly established Kendal Lymphology Centre (KLC) - an independent clinic, providing NHS care for 2 Health authorities. We have seen over 4500 patients since it opened in 2005 and see patients suffering from all types of lymphoedema, lipoedema and children if necessary.
Receiving numerous awards over the years, the Chronic Oedema Nurse of the year award in 2019 was very special – as was the rating of “outstanding” following the recent Care Quality Commission inspection.
I have also written work for publication – the latest in conjunction with the Lymphoedema Support Network (LSN) entitled “Your Lymphoedema – taking back control”. Providing training and education is also important to me locally, nationally and internationally – Kenya particularly, educating Health Care Professionals to manage breast cancer related lymphoedema.
More information about our service can be found on our website: www.kendal-lymphology.co.uk
Gill Drew-Griffiths
Specialist Physiotherapist
Colchester Holistic Health Clinic
Gill Drew-Griffiths is a Specialist Physiotherapist with expertise in oncology and palliative care and experienced Lymphoedema Clinician. Having worked in hospice care for many years, she now works in private practice running Colchester Holistic Health Clinic. Gill has a background of teaching Design and Ergonomics, a Masters in Acupuncture and guest lectures at Essex and Kingston Universities.
Cheryl White
Lymphoedema Physiotherapist/BLS Editor
Christie Hospital/British Lymphology Society
Cheryl qualified as a Physiotherapist in 1990 and has worked in the field of Lymphology since 1998. She completed her specialist lymphoedema training at Kings College, London with Eunice Jeffs and is trained in the Casley Smith method of MLD and FG-MLD.
Cheryl has worked in a variety of settings including community and hospices. She currently works at The Christie in Manchester and is a certified trainer for the Lymphoedema Training Academy and a Clinical Trainer at Haddenham Healthcare.
Cheryl joined BLS in 1998 and has been a member of the BLS Committee in two episodes, firstly, from October 2003 to October 2005, and was re-elected in October 2010 –to date. She is a co-opted member of the Board, holding the position of BLS Newsletter Editor.
Jay Fairbairn
Leg and Foot Practitioner
Healthy Legs & Feet
Qualified as an Enrolled Nurse in 1991 and became a Registered General Nurse in 2000. To be able to share my passion for tissue viability, I studied Chronic Wound Management including Lower Limb Conditions, obtained Further & Adult Education Teaching Certificates, and became an NVQ assessor. Worked at Hinchingbrooke and Papworth hospitals before community nursing in Cambridgeshire. Worked in Orkney for 12 years as remote-rural, emergency and islands relief nurse, then in Nottinghamshire including leg wound clinics. Completed Foot Health Practitioner training in 2021 and became self-employed in 2022 to enable folk with long-term lower limb conditions to feel comfortable, and to champion them to self care within their individual abilities and at their own pace. I have travelled to work by foot, bicycle, van, motorcycle, 3-wheel and 4 wheel cars, campervan, train, boat and plane.
Pryscilla Correia Borrajo
Lymphoedema Specialist Physiotherapist
Norwich Lymphoedema Service
Graduated as a Physiotherapist in 2007 and Women’s Health Specialist in 2008 both in Brazil. I was working as a placement supervisor in Brazil when decided to move to the UK in 2012. Since then, I completed a Master’s in Clinical Research at UEA, worked in the Women’s Health Physio Team at the James Paget Hospital, and now in the Norwich Lymphoedema Team. I am passionate about helping people, my team, family, and friends. In my life, I have crazy love for my husband Leo and my dog Churros. You will always find me walking and singing.
Gill Drew-Griffiths
Specialist Physiotherapist
Colchester Holistic Health Clinic
Gill Drew-Griffiths is a Specialist Physiotherapist with expertise in oncology and palliative care and experienced Lymphoedema Clinician. Having worked in hospice care for many years, she now works in private practice running Colchester Holistic Health Clinic. Gill has a background of teaching Design and Ergonomics, a Masters in Acupuncture and guest lectures at Essex and Kingston Universities.
Cheryl White
Lymphoedema Physiotherapist/BLS Editor
Christie Hospital/British Lymphology Society
Cheryl qualified as a Physiotherapist in 1990 and has worked in the field of Lymphology since 1998. She completed her specialist lymphoedema training at Kings College, London with Eunice Jeffs and is trained in the Casley Smith method of MLD and FG-MLD.
Cheryl has worked in a variety of settings including community and hospices. She currently works at The Christie in Manchester and is a certified trainer for the Lymphoedema Training Academy and a Clinical Trainer at Haddenham Healthcare.
Cheryl joined BLS in 1998 and has been a member of the BLS Committee in two episodes, firstly, from October 2003 to October 2005, and was re-elected in October 2010 –to date. She is a co-opted member of the Board, holding the position of BLS Newsletter Editor.
Jay Fairbairn
Leg and Foot Practitioner
Healthy Legs & Feet
Qualified as an Enrolled Nurse in 1991 and became a Registered General Nurse in 2000. To be able to share my passion for tissue viability, I studied Chronic Wound Management including Lower Limb Conditions, obtained Further & Adult Education Teaching Certificates, and became an NVQ assessor. Worked at Hinchingbrooke and Papworth hospitals before community nursing in Cambridgeshire. Worked in Orkney for 12 years as remote-rural, emergency and islands relief nurse, then in Nottinghamshire including leg wound clinics. Completed Foot Health Practitioner training in 2021 and became self-employed in 2022 to enable folk with long-term lower limb conditions to feel comfortable, and to champion them to self care within their individual abilities and at their own pace. I have travelled to work by foot, bicycle, van, motorcycle, 3-wheel and 4 wheel cars, campervan, train, boat and plane.
Pryscilla Correia Borrajo
Lymphoedema Specialist Physiotherapist
Norwich Lymphoedema Service
Graduated as a Physiotherapist in 2007 and Women’s Health Specialist in 2008 both in Brazil. I was working as a placement supervisor in Brazil when decided to move to the UK in 2012. Since then, I completed a Master’s in Clinical Research at UEA, worked in the Women’s Health Physio Team at the James Paget Hospital, and now in the Norwich Lymphoedema Team. I am passionate about helping people, my team, family, and friends. In my life, I have crazy love for my husband Leo and my dog Churros. You will always find me walking and singing.
Dr Rhian Noble-Jones
National Lymphoedema Researcher
Lymphoedema Wales Clinical Network
Dr Rhian Noble-Jones has recently been awarded the prestigious BLS Outstanding Contribution to Lymphoedema Award after over three decades of work in the lymphoedema field. She has taught and presented internationally and is one of very few in the UK who can examine others at PhD level on the topic. Rhian specifically started researching and raising awareness of genital oedema 12 years ago working with patients, lymphoedema specialists, urologists, oncologists and surgeons to develop a male and female genital self-report form. That simple form has gone on to be translated to numerous languages and is regularly used across the lymphoedema world.
Dr Rhian Noble-Jones
National Lymphoedema Researcher
Lymphoedema Wales Clinical Network
Dr Rhian Noble-Jones has recently been awarded the prestigious BLS Outstanding Contribution to Lymphoedema Award after over three decades of work in the lymphoedema field. She has taught and presented internationally and is one of very few in the UK who can examine others at PhD level on the topic. Rhian specifically started researching and raising awareness of genital oedema 12 years ago working with patients, lymphoedema specialists, urologists, oncologists and surgeons to develop a male and female genital self-report form. That simple form has gone on to be translated to numerous languages and is regularly used across the lymphoedema world.
Dr Kristiana Gordon
Consultant in Dermatology and Lymphovascular Medicine
St George’s Hospital
Dr Kristiana Gordon is a Consultant in Dermatology & Lymphovascular Medicine. She is Clinical Lead of the Lymphoedema Service at St George’s Hospital in London, where her team cares for thousands of patients with lymphoedema and lipoedema. She is also a Foeldi-certified lymphoedema therapist.
Dr Gordon has completed her doctorate in the genetics of primary lymphoedema and imaging of the lymphatic system. She continues to pursue her research interests within the rapidly developing field of lymphovascular medicine and lipoedema.
Dr Kristiana Gordon
Consultant in Dermatology and Lymphovascular Medicine
St George’s Hospital
Dr Kristiana Gordon is a Consultant in Dermatology & Lymphovascular Medicine. She is Clinical Lead of the Lymphoedema Service at St George’s Hospital in London, where her team cares for thousands of patients with lymphoedema and lipoedema. She is also a Foeldi-certified lymphoedema therapist.
Dr Gordon has completed her doctorate in the genetics of primary lymphoedema and imaging of the lymphatic system. She continues to pursue her research interests within the rapidly developing field of lymphovascular medicine and lipoedema.
Marie Gabe-Walters
National Research and Innovation Lymphoedema Specialist
My clinical role is as a Lymphoedema Specialist in an out-patient clinic which is housed in a Hospice in Central Scotland where I have been based for nearly 20 years. I provide leadership for the lymphoedema service for the health board, which includes the support and management for anyone living with lipoedema and lymphoedema of any cause as well as service development and education.
My other role is as a part time lecturer at University of Glasgow where I am programme lead on the Graduate and Postgraduate Specialist Lymphoedema programmes offering accredited education from keyworker to specialist level along with an online introductory course. I am very proud to be Co – Vice Chair of the British Lymphoedema Society as well as being a very active member of the Scottish Lymphoedema Practitioners Network and a teacher with Casley Smith Lymphoedema Education UK.
My special interests lie in supporting a rehabilitative approach to these long term conditions including promoting supported self management and tailoring individual treatment through goal setting. We have developed a strong patient support group locally who are consulted in any service development or new project for their views. I am passionate about involving our patients in decisions and actively in our management plans as well as providing timely information and education to all health care professionals to enable a better understanding of lymphoedema and lipoedema.
Yolande Borthwick
Lymphoedema Specialist/ University Lecturer
Strathcarron Hospice/University of Glasgow
My clinical role is as a Lymphoedema Specialist in an out-patient clinic which is housed in a Hospice in Central Scotland where I have been based for nearly 20 years. I provide leadership for the lymphoedema service for the health board, which includes the support and management for anyone living with lipoedema and lymphoedema of any cause as well as service development and education.
My other role is as a part time lecturer at University of Glasgow where I am programme lead on the Graduate and Postgraduate Specialist Lymphoedema programmes offering accredited education from keyworker to specialist level along with an online introductory course. I am very proud to be Co – Vice Chair of the British Lymphoedema Society as well as being a very active member of the Scottish Lymphoedema Practitioners Network and a teacher with Casley Smith Lymphoedema Education UK.
My special interests lie in supporting a rehabilitative approach to these long term conditions including promoting supported self management and tailoring individual treatment through goal setting. We have developed a strong patient support group locally who are consulted in any service development or new project for their views. I am passionate about involving our patients in decisions and actively in our management plans as well as providing timely information and education to all health care professionals to enable a better understanding of lymphoedema and lipoedema.
