Denise's Story - Lipoedema UK

This story comes from the perspective of Denise Hardy of Kendal Lymphology Centre, also one of Lipoedema UK’s outstanding Nurse Consultants . Denise is reluctant to be singled out, but we all regard her as an amazing Healthcare Professional and Lipoedema UK Star!

Palliative care is my passion – 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 from 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 – the former of course being a common side effect of cancer treatment.

I set up my first Lymphoedema clinic in a hospice and for the last 30 years I have dedicated my time/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/advice to all those referred to us.

However, in March this year, my palliative care background was going to come full circle. COVID-19 was impacting all our lives on a massive scale. 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 (who had no-one else to chat to) initially filled our days.

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

I had joined the NHS Professionals Bank immediately Lockdown was announced, I felt it was time for me to help wherever I could, and that is what I have been doing for the last few weeks. I am not working on the Front Line, but I have re-visited my end of life skills to tend and care for those who have lost their battle with whatever disease has befallen them (Covid, cancer or whatever else) in both the Hospice and Nursing home setting. This virus has been so very cruel – it has separated family and loved ones at the very time they need each other the most; being able to sit with someone who is dying (for whatever reason) has been a huge privilege once again. It has been so very sad, humbling and heart wrenching…but it has meant that every one of those patients I have nursed, has had someone by their side that cared for them – to hold their hand, to say goodbye.

As my support is now required less and less, I have volunteered to help with the NHS clinical contact/trace team which will soon come into operation and I will do that between shifts in clinic as we slowly start to re-introduce face to face visits with patients. Although my clinic is a provider to the NHS, it is also independent which means I am unable to access the appropriate PPE through the usual NHS supplies and I have had to purchase it privately (at enormous cost!). But it is paramount that I ensure the safety of both my staff AND patients/carers who visit.

A council grant has helped this project (though how it will be re-paid, I have yet to figure out)! Risk assessments and policies and procedures are also being drawn up to ensure we are doing all we should to comply with CCQ regulations and hopefully, in the next two weeks we can start to welcome those patients (who are not shielding) back to clinic for their usual treatment and support, albeit at more of a distance and wearing appropriate protective equipment to ensure the safety of them and the staff.

‘A new normal’ is a phrase we are all coming to recognise – but it is the current reality – and one we have to embrace for the time being. And we will. And at some point, we will all meet again. I look forward to that… Stay safe until then!

Warmest wishes, Denise x

NHS Stars Series- Denise Hardy