Sunday 6th March marks World Lymphoedema Day 2022, and another opportunity for me to bang my drum about my favourite subject – as many of my friends and colleagues at St Ann’s Hospice can tell you – lymphoedema.
If you work with people who have advanced illnesses, you will know that oedema and lymphoedema are common and often distressing conditions. They have an impact both physically and psychologically on individuals, and can be equally difficult for family and friends to observe.
I have found that staff in hospices and palliative care settings can have a wide range of different understanding and confidence in lymphoedema management. Particularly in the last couple of years, when we are all busy and training opportunities may be limited, it can be a challenge to improve our knowledge on other conditions such as lymphoedema. But in doing so, we can improve the quality of life for our patients.
World Lymphoedema Day is an opportunity for us to learn more about this common condition, how to support people to live well with lymphoedema and how to develop confidence in hospice teams to identify, assess and manage lymphoedema.
What is lymphoedema?
Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. It can affect any part of the body, but is most commonly seen in an arm or a leg. It can also be seen in the head and neck, breast, abdomen and genital area.
It is estimated that lymphoedema affects between 263,000 – 422,000 people in the UK. Primary lymphoedema is rare, but secondary lymphoedema (caused as a result of cancer or other illnesses) is much more common. The NHS estimate that 2 in 10 people with breast cancer are affected by lymphoedema, 5 in 10 people with vulval cancer and 2 in 10 people with penile cancer.
It can be hard to explain what lymphoedema is to someone experiencing symptoms, or their family or carers. But like most things, if it is not communicated clearly then it can cause misunderstandings and distress.
I have found misunderstanding about lymphoedema particularly problematic with people who have developed lymphoedema related to cancer and its treatments. They may have heard words like ‘lymph nodes’ in relation to secondary cancers and advancing illnesses. More than a few people I have met have had lymphoedema described to them as ‘blocked lymph nodes’ and believe that their swelling is actually cancer.
People are often relieved to realise that this swelling is not life threatening, although the risk of sepsis is always possible, but a condition resulting from their cancer that can be managed with the right support.
Supporting people to live well with lymphoedema
Working together as a team is the best way to provide the interventions needed to manage this condition. We cannot always reduce the lymphoedema, so we need to be realistic when supporting people. But we can definitely alleviate and relieve its symptoms, and support people to manage their lymphoedema and be able to do the things that are important to them.
- Look for reversible factors
During assessments, consider any reversible factors which may relieve symptoms quickly. How often have we seen someone who has swollen legs and then found out they have been sleeping in their chair for a month as they are breathless or cannot get up the stairs? Or people may be using a drug which is exacerbating their symptoms which could be adjusted.
Looking for these reversible factors, and working as a team to identify and support people in a holistic way, can make a huge difference to relieving symptoms of lymphoedema.
- Keep treatments consistent
Consistency of treatments is vital. This can be problematic both in the community and in hospice settings. Poor skin condition and compression not being applied can reduce mobility, increase the risk of cellulitis and lymphorrhea and wounds.
Communication between teams and individuals is also important, as always, to help adapt treatments as disease advances and patients’ needs change. People may struggle to apply their compression, they may need more help with skin care or there may be an increase in size in the area of oedema so existing garments do not fit. This is a time to think creatively to allow for consistency in treatment.
Person-centred care, which is tailored to the individual, has always been important in hospice care. There are many different styles of garments and donning aids that can be considered to help to ease of application.
I have found that some people have used long handled sponges and rollers to allow them to continue to wash and apply emollient. Of course, in some cases a person may need help from family members or community support. We need to ensure they too feel confident to assist with treatments.
- Work towards someone’s goals
Of course there are lots of amazing stories too. When lymphoedema treatments go well, the outcomes can be life-changing. It could be a reduction in the size of a limb, wearing shoes to go to a family meal, easing a swallow or teaching family how to provide gentle massage of oedematous limbs for a loved one approaching the end of life.
Everyone’s goals and priorities are different, so it’s important to discuss these with the person you’re supporting to understand what would make a big difference in their life, or what they are working towards, so you can focus on managing or alleviating symptoms to make these things possible.
Developing confidence in teams
The final question is; how do we develop lymphoedema awareness and confidence within our hospice and palliative care teams?
If you are lucky enough to have a local lymphedema team, they can definitely offer their expertise. But this needs to be supported by a whole team approach. Assessments, observations and treatment plans need to be embedded into care plans.
At St Ann’s Hospice in Greater Manchester, UK, I have been working with our Advanced Clinical Practitioners (ACP) to see how we can embed lymphoedema management in our care across the hospice. They are spending time in our outpatient clinics so we can develop a common language and approach.
The Advanced Clinical Practitioners are now identifying individuals on our wards, carrying out initial assessments, prescribing emollients and gentle compression such as tubular bandage or liners. They are encouraging the use of care plans and increasing confidence among staff. New link groups have also been developed to help share knowledge across teams.
Our Lymphoedema Team can develop more enhanced and modified plans when required, but having confidence and skill in managing lymphoedema across the hospice has allowed patients to get treatment from day one of admission.
It’s also important to share expertise across hospices and other teams in your local area, to help improve the care and support for people with lymphoedema across a wider regional footprint.
Working with our Clinical Director, I developed a lymphoedema support tool for the Greater Manchester and East Cheshire Palliative Care Strategic Network. This covers subjects such as drugs that exacerbate lymphoedema, contraindications, differential diagnosis of red legs and the best management of cellulitis in lymphoedema.
If you’re looking for tools and resources which you could share, the British Lymphology Society has excellent resources on its website. You can also look at arranging training for you or your teams, particularly around developing lymphoedema assessment and treatment in your setting.
On World Lymphoedema Day and every day of the year, I will carry on banging my drum to raise awareness of this condition, educate our teams and support people to live well with lymphoedema.
Fiona Sanderson, St Ann’s Hospice, Manchester, UK