Gaynor Leech Guest Blog October 2021

I have lived with Lymphoedema for over 10 years now and running L-W-O Community for eight years.  This blog is very much a reflection of how we arrived at where we are today.  In the beginning. it really was a world of two halves, the patient, the person who was living with Lymphoedema, often angry, confused, desperate for support, help and information and then we have GP’s lacking in general knowledge of how the lymphatic system works, sometimes not able to comprehend what their patients are telling them, often dismissive.  Sadly, not much has changed.

The Lymphoedema clinics were often overwhelmed with the sheer number of patients needing treatment.  Yet they are an important lifeline to many of us who live with Lymphoedema.  Training for Lymphoedema specialists was often fixed in the past, therefore while essential treatment was great, there did not appear to be new innovative ideas to improve the patient’s wellbeing.  This I am pleased to say is changing with treatments like Deep Oscillation being introduced, not only in clinics but some patients being able to experience this at home either as a trial or being able to purchase their own machines.

I remember being told that I would never be discharged by the clinic, and I was fortunate enough to have appointments for nearly seven years.  However, I was discharged as I was deemed to be capable of looking after myself, and thankfully, I have a good support network.

This is not the same for some of our members who are left struggling after clinic discharge and feel they have been abandoned.  For those that are struggling after discharge they must be offered a chance for re-referral.  Sadly, there are long waiting lists due to the pandemic in Lymphoedema clinics.  We must not be complacent and recognise that being discharged from Lymphoedema clinics in some patients leads to more mental health problems.

When I was diagnosed, if being told you had a lifelong, incurable condition wasn’t enough, there was little emphasis on how your condition could be managed and treated.  I will never forget the ‘do and don’t’ list which made me feel as if my life was over.  Thankfully the list I was given is now considered to be mostly myth with a new dawn of wording such as guidelines or sensible precautions and not allowing your Lymphoedema to define who you are.

Unfortunately, due to the pandemic, many of our clinics were closed as nurse specialists were redeployed to help in hospitals, appointments for our members dwindled and, in some cases, ceased altogether.  Worse still some of the clinics will not reopen or are operating with reduced staffing levels.  In many cases Lymphoedema clinics operate as charities and are funded by donations.  There is very little treatment on the NHS, which is simply not good enough and many of members cannot afford to go private.  For those that can afford to go private there is lots of information on our links page.

For me personally starting L-W-O and creating the community we have become was my lifeline; it gave me a purpose in life at a time when I thought I would be slowing down, maybe stuck in front of the TV.  In the beginning there were tears, sleepless nights and what seemed like an immovable brick wall.  However, the last two years have been hectic, and we have become a small part of the Lymphoedema community.  This I am delighted about because community engagement is very much one of our goals and helps greatly toward raising awareness.

The strange thing is L-W-O evolved and keeps evolving..

What has changed?  Or the more appropriate question for our community would be 'who has changed?'  That would be those of us who live with Lymphoedema.  With the rise of online Lymphoedema support groups, which are all voluntary, the shift has been that these groups are patient driven.  Within L-W-O, there is this thirst for understanding Lymphoedema.  Our members realise that one size does not fit all and often search for their own answers to improve the quality of their lives.  With the emphasis on selfcare, our members find they can take care of themselves but ultimately, we all need supported selfcare.  We all hope that one day the NHS will realise that Lymphoedema and looking after lymphatic health is a priority.

In the meantime, groups like ours, provide a much-needed service where there is a place to chat or rant to people who truly understand how they feel because they live with Lymphoedema.

Patient Advocates

Patient advocates are not new in general health care terms but the rise of the patient advocate in the Lymphoedema world is becoming a force to be reckoned with.  Whether you live in America, Australia, Europe or the UK, Lymphoedema communities are organising themselves but equally reaching out to each other.  Whatever you think about the internet or social media for the Lymphoedema community, it has given us a voice that would have been unthinkable a few years ago.

I do have a giggle when I see in these support groups statements like “I won’t be quiet” or “I am not going away”.  What I find truly amazing is seeing our members welcoming new members and freely giving their time to help other members, even on the days when they have challenges of their own.

The language we are using has changed, no more diet and exercise but hashtags #healthyliving, #lifestylechanges #getmoving #everbodycan. We have members who go circuit training, horse riding, running, swimming and walking.  For those that have mobility problems or like me who do not like the gym, we are able to produce videos to show how gentle movements will keep the lymph fluid flowing and improve their overall health.

Compression always came in beige, but the patient wanted colours and the manufacturers took this on board and now we have coloured sleeves and hosiery.

Even the professional organisations are keen to work with patients and patient advocates, invites to conferences and webinars regularly land in my inbox, sometimes far too many for me to attend.  When I started this journey, I would never have imagined that the blogs I write for L-W-O would be republished on other websites or that I would be approached to write an article or blog for another organisation.

I have always believed that we keep learning throughout our lives and running L-W-O has been no exception.  In the early days it was all about covering my back, making sure as best I could that I took courses which would help with the business side of our group.  In the last few years that turned to learning as much as I could about Lymphoedema, and I have added CPD (Continuing Professional Development) points plus a NCFE certificate on Technology Enabled Care to my skill set. Talking to Mary recently I happened to mention that I had taken eight courses in the last 12 months, and she found that ironic as it was our 8^th birthday! 

Never would I have imagined working with the lovely Mary Fickling from PhysioPod UK, or doing a joint initiative with BLS (British Lymphology Society), or becoming a patient representative for the European Advocacy Group or a Selfcare Champion on the Selfcare Forum or as a guest writer, writing a chapter for a soon to be published book.

Thank you to all our members, followers and supporters for being part of L-W-O Community over the last eight years, I am going to leave the last words to our members when asked to describe in one word what our support group mean to them.

LWO COMMUNITY