Review NHS lipoedema care

We ask the Government review the NHS approach to diagnosis, referral and treatment of lipoedema. This should include GP training, access to conservative treatments, and clear pathways to specialist care.

Patients with lipoedema can experience chronic pain, limited mobility and fatigue, as well as psychological distress which can lead to poor body image, depression and social withdrawal. The Government recognises that patients with lipoedema face significant challenges, including delays in diagnosis and access to treatment, and are working to address this.

People with lipoedema are usually treated through routine access to primary or secondary care services, with services commissioned locally by integrated care boards (ICBs). It is the responsibility of ICBs, working with clinicians, service users and patient groups, and informed by guidance, to develop services and care pathways that meet patients’ needs. This ensures that pathways can be made to reflect local needs, capacity and expertise. We appreciate that this can sometimes lead to variations in practice.

Wounds UK, an organisation that provides guidance, education and training in wound and skin management, has published best practice guidance on diagnosing and treating lipoedema. The guidance provides a framework for developing services through best practice recommendations for diagnosis, conservative management and improved patient care. The guidance is intended to help improve recognition, diagnosis and access to care, and serves as a key resource for service commissioners like ICBs to develop consistent and evidence-based services.
The guidance can be found at https://wounds-uk.com/wp-content/uploads/2023/02/450f55130cff87901188206fd115ccf3.pdf.

A lack of awareness about lipoedema among health professionals can, of course, be a major obstacle in diagnosing and managing the condition, leading to misdiagnosis, delayed treatment and increased suffering for patients. There is a growing recognition of the importance of early diagnosis and management, and dedicated resources have been developed to address this.

The Royal College of General Practitioners (RCGP) offers a range of educational resources, through RCGP Learning, to support the professional development of GPs throughout their careers. To support clinicians in identifying and treating lipoedema, the RCGP has worked in partnership with Lipoedema UK and the Royal College of Nursing to develop and publish an e-learning module for GPs. The module, which is available for free to RCGP members and for a fee for others, covers the presentation, pathophysiology, diagnosis and management of lipoedema in primary care, providing a foundation for understanding the condition.

Lipoedema UK also offers a membership package specifically for clinicians and healthcare professionals, which includes access to updates on treatments, information about the differences between lipoedema, lymphoedema and obesity, and a GP information pack to share with their patients.

More information is available at the following link: https://lipoedema.co.uk/healthcare-membership/.

Ultimately, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying their own learning needs as part of their continuing professional development.

We understand that living with lipoedema can be challenging and we remain committed to supporting patients through evidence-based treatments. Patients should discuss options such as compression therapy, physiotherapy, pain management and referral to a specialist lipoedema clinic with their GP. These approaches can help manage symptoms and improve quality of life. The NHS can offer treatments not recommended in National Institute for Health and Care Excellence (NICE) interventional procedures guidance, as this guidance does not constitute a legal ban but a set of recommendations for NHS bodies to consider. Clinicians are expected to use their professional judgment, taking the guidance into account alongside individual patient circumstances, and there is no legal barrier to providing or funding a treatment if deemed appropriate for a specific patient.

We are aware that some European countries have developed more structured pathways and formal recognition frameworks for lipoedema. In particular, the LIPLEG (Liposuction for Lipoedema in Stages I, II, or III) study, which was a randomised controlled trial that compared the effectiveness of liposuction with conservative management, is informing German health policy, establishing liposuction as a medically necessary treatment rather than a cosmetic procedure. NICE, the independent body responsible for developing evidence-based guidance for the health and care system on best practice, published interventional procedure guidance on the use of liposuction for chronic lipoedema in March 2022. NICE have committed to reviewing this guidance when the LIPLEG trial results are published in full to see if the evidence supports a positive recommendation on the safety and efficacy of liposuction for chronic lipoedema.

Department of Health and Social Care