No abstract

The four previous articles in this series addressed the myths and facts surrounding lipoedema. We have shown that there is no scientific evidence at all for the key statements made about lipoedema – which are published time and time again. The main result of this “misunderstanding” of lipoedema is a therapeutic concept that misses the mark. The patient’s real problems are overlooked.The national and especially the international response to the series, which can be read in both German and English, has been immense and has exceeded all our expectations. The numerous reactions to our articles make it clear that in other countries, too, the fallacies regarding lipoedema have led to an increasing discrepancy between the experience of healthcare workers and the perspective of patients and self-help groups, based on misinformation mostly generated by the medical profession.Parts 1 to 4 in this series of articles on the myths surrounding lipoedema have made it clear that we have to radically change the view of lipoedema that has been held for decades. Changing our perspective means getting away from the idea of “oedema in lipoedema” – and hence away from the dogma that decongestion is absolutely necessary – and towards the actual problems faced by our patients with lipoedema. Such a paradigm shift in a disease that has been described in the same way for decades cannot be left to individuals but must be put on a much broader footing. For this reason, the lead author of this series of articles invited renowned lipoedema experts from various European countries to discussions on the subject. Experts from seven different countries took part in the two European Lipoedema Forums, with the goal of establishing a consensus. The consensus reflects the experts’ shared view on the disease, having scrutinized the available literature, and having taken into account the many years of clinical practice with this particular patient group. Appropriate to the clinical complexity of lipoedema, participants from different specialties provided an interdisciplinary approach. Nearly all of the participants in the European Lipoedema Forum had already published work on lipoedema, had been involved in drawing up their national lipoedema guidelines, or were on the executive board of their respective specialty society.In this fifth and final part of our series on lipoedema, we will summarise the relevant findings of this consensus, emphasising the treatment of lipoedema as we now recommend it. As the next step, the actual consensus paper “European Best Practice of Lipoedema” will be issued as an international publication.Instead of looking at the treatment of oedema, the consensus paper will focus on treatment of the soft tissue pain, as well as the psychological vulnerability of patients with lipoedema. The relationship between pain perception and the patient’s mental health is recognised and dealt with specifically. The consensus also addresses the problem of self-acceptance, and this plays a prominent role in the new therapeutic concept. The treatment of obesity provides a further pillar of treatment. Obesity is recognised as being the most common comorbid condition by far and an important trigger of lipoedema. Bariatric surgery should therefore also be considered for patients with lipoedema who are morbidly obese. The expert group upgraded the importance of compression therapy and appropriate physical activity, as the demonstrated anti-inflammatory effects directly improve the patients’ symptoms. Patients will be provided with tools for personalised self-management in order to sustain sucessful treatment. Should conservative therapy fail to improve the symptoms, liposuction may be considered in strictly defined circumstances.The change in the view of lipoedema that we describe here brings the patients’ actual symptoms to the forefront. This approach allows us to focus on more comprehensive treatment that is not only more effective but also more sustainable than focusing on the removal of non-existent oedema.

late stage lymphoedema; inelastic bandages; excess limb volume; clinical audit; compression therapy j. whitaker, 1 msc, rn, director, northern lymphology limited/ senior lecturer; a. williams, 2 phd, rn, msc, rdn, rnt, lymphoedema nurse consultant; d. Pope, 3 rn, lymphoedema nurse, previously northern lymphology; r. elwell, 4 rn, msc, macmillan lymphoedema nurse specialist; M. Thomas, 5 mBe, mcsp Bsc (hons) physiotherapy, national clinical lead for lymphoedema in Wales, H. charles, 6 phd, rn independent tissue viability consultant; j. Muldoon, 7 rn, msc, head of clinical research;

As the population ages, more complex care is required to manage multiple comorbidities. In response, a nurse-led service was developed to care for patients with 'red legs'. This chronic inflammatory condition is often misdiagnosed as acute cellulitis and can result in unnecessary hospital admission and inappropriate treatment, with substantial resource and financial implications for trusts. Setting up the service required a multi-agency group to analyse current provision and identify gaps in care. Integrated care pathways were developed to focus on patient experience through referral, diagnostics and treatment. Evaluation showed that much of the prescribed care for patients with red legs could be carried out by patients at home and only a small number required a follow-up appointment. High levels of patient satisfaction were recorded.

This project was developed to set up a nurse-led service based on the needs of patients diagnosed with 'red legs'. These patients are often wrongly admitted into hospital for treatment of cellulitis. Representatives from the specialties involved in caring for those individuals with red legs were invited to participate with patients to create a stakeholder group whose purpose was to develop integrated care pathways focused on referral criteria, diagnostics and treatment to inform a new nurse-led service. There was a commitment to utilising a number of facilitation techniques and practice-development methods in the progression of the project with the support of the Foundation of Nursing Studies. Much of the prescribed care can be carried out by the patients at home and only 25% patients have required a follow-up appointment within the new service. The service has now been fully commissioned and a secondment opportunity has been developed to lead the new service. Significant savings have been demonstrated and regular revision of the integrated care pathways with all groups, including the patients, will take place.