Discovering Lipoedema while working as a therapist

Palliative care is my passion. It was a career I had always wanted to pursue after my beloved grandfather died of throat cancer all alone on a busy, general ward, miles away from home and the family who loved him dearly. I have always wanted to try and right that wrong. I joined a hospice the minute I passed my nursing/midwifery exams – and I loved every minute of it. Being able to help improve quality of life was a great privilege – and when that was no longer possible, being there to support the dying patient and the family was a huge and humbling privilege. My work at the hospice also led me to my career in lymphoedema/Lipoedema (lymphoedema is a common side effect of cancer treatment).

I set up my first Lympoedema Clinic in a hospice, and for the last 30 years I have dedicated my time and effort into raising the profile of these distressing conditions, finally setting up an independent, specialist nurse-led clinic in the Lake District, where I am so proud to be a provider to the NHS and to facilitate appropriate care, support and advice to all those referred to us. However, with the arrival of the Covid pandemic, my palliative care background went full circle. Our normal lives were turned upside down and my busy, specialist clinic was suddenly in turmoil. We couldn’t see patients face to face – most were either self-isolating or shielding anyway – so we very quickly had to adapt the way we worked. Telephone support, video calls and virtual assessments along with numerous emails became the new norm. Though not quite the same as personal contact, it can be just as reassuring to many, who more often than not were living alone and with very little support. Videos were hastily put together to demonstrate specific exercises including hosiery application and how to apply Kinesio Taping, for example. And just listening to people chat initially filled our days.

I am so proud that every patient on our caseload was contacted at some point to remind them we were there for them – no matter what the problem was. We would try to help – or find someone who could. Two weeks in, I realised that my team was more than capable of continuing to support our patients and that meant I felt secure enough to lend my expertise to other disciplines which were struggling as staff themselves were affected by Covid.

I had joined the NHS Professionals Bank immediately lockdown was announced. I felt it was time for me to help wherever I could. I did not work on the ‘Front Line’, but I revisited my end-of-life skills to tend and care for those who were losing their battle with whatever disease had befallen them (Covid, cancer or whatever else), in both the hospice and nursing home setting. The Covid virus was so very cruel, separating family and loved ones at the very time they needed each other the most. Being able to sit with someone who was dying (for whatever reason) was a huge privilege once again, humbling and heart wrenching, but it meant that every one of the patients I nursed had someone by their side that cared for them – to hold their hand, to say goodbye.

As the pandemic subsided, we slowly started to reintroduce face-to-face visits with patients. Although my clinic is a provider to the NHS, it is also independent, which means I was unable to access the appropriate PPE through the usual NHS supplies. I had to purchase it privately (at enormous cost), but it was and is paramount that I ensure the safety of both my staff and patients/carers who visit.

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