Updated: Nov 28

I am thankful to say that November has been a far more relaxed month and I have been far more organised. Taking a leaf from the selfcare week 12th - 15th of November I have said ‘NO’ to several projects or involvements, as I found I could not keep up with all I have been asked to get involved with. If you are one of the individuals or organisations I have said ‘NO’ to please don’t be offended it is not personal, this is me taking care of me.

In the last eighteen months I have increased the visual aspect of everything I produce and now I have recorded my first voice over, which was an interesting experience. In the future I hope to be adding podcasts, but this all takes time. The UK website is growing with lots of added information, and I am pleased with its presentation. Our first website over the next three years will be redesigned with some exciting new features but re-development will take time.

Our Selfcare Week videos have been well received, this year, as I asked our support group members their thoughts on selfcare, and L-W-O has a dedicated page on our website so if you missed any of it do look. On the selfcare webpage I have written about what selfcare means to me. I have also written a piece on person-centred care and Technology Enabled Care (TEC) these are not new concepts. However, I am still surprised when patients tell me that they do not know about person-centred care or TEC, that they do not know they have a right to choose in partnership with their health care provider their health and social care needs.

Person-centred care gives us as individuals our families and communities the choice to personalise our health and social care. The tools we are given are aimed at managing our own conditions with support from our health care provider to improve our health, care, and wellbeing.

Over the last few years there has also been a push towards Technology Enabled Care (TEC). Initially a Holistic Needs Assessment (HNA) should be carried out to determine if TEC can benefit the individual, this is aimed at keeping those of us who live with a long-term condition like lymphoedema in our own home when things start to get difficult. The HNA will be undertaken by, doctors, nurses, occupational health practitioners or private TEC providers. The initial assessment would look at all the individual’s needs or difficulties that the individual is experiencing and whether using TEC will improve the quality of life and wellbeing. Great for those of us who live with long-term conditions. Covid-19 has accelerated the need for TEC read more…

Lymphoedema Network Wales have some great presentations.

I was thrilled to be able to attend the Patient Day virtually at the ILF Conference held in Denmark. Sadly, there were teething problems with the virtual streaming but other than that irritation it was an enjoyable day.

Many moons ago when I lived in Cape Town, I worked in Day Care Centres supervising and later managing staff and caring for the children who attended. Work-based training was ongoing. We did several courses on listening and hearing with the emphasis on you listen to someone, but do you hear what was being said. So, I smiled when listening to the Welsh team presentations and the terms ‘Reflective Listening’ and Reactive Listening’ where mentioned.

Patient-centred care at its best

The presentations from the Welsh Lymphoedema Team were a breath of fresh air because whichever topic the team talked about it was all about listening, hearing their patients, and giving patients the choice to make decisions which is supported by the health care teams. Thank you to: Dr Melanie Thomas @Lymphwales, Dr. Rhian Noble-Jones @rhianlymph, Karen Morgan @karen_morgan10 and Karl Hocking @karlhocking

Thrilled that the next ILF Conference is coming to the UK

I will have been asking the following questions ever since I became an Affiliate of the ILF and I have even been told off for asking in the past. However, my next questions are:

One final comment from me on the Welsh team... I was thrilled to hear when they suggested that all therapists or health care professionals working in the lymphoedema community should ‘read patients stories’ to understand what it is like to live with lymphoedema this is part of #person_centred_care

Sharing Information

In the lymphoedema community the sharing of research and information is something I have always wanted to see. I hated in the beginning that I had to do my own research much of which I found contradictory. Finally, we are seeing the community is getting better at producing factsheets or information via posts across social media not just aimed at our healthcare professionals but aimed at patients. Therefore, the internet has provided us with a tool to enhance #patientempowerment and #communityengagement.

Talking accessibility: I do ask our community when producing information to ask themselves “Is it aimed at the patient?”

Patients spend screen time searching for answers doing their own research as access is better. Posters/websites should be mobile friendly, from font sizes to the colours used because most patients only have access via mobile phones. I know from experience that this is not an easy task, but L-W-O does try to take into consideration, those who have deteriorating eyesight’s or live with Irlen Syndrome.

Imagine if this is what you see on your mobile phone because the font size is too small or the colours you use do not stand out on the background you use.

Accessibility is key and I have spent a lot of time researching the best way to present our material and I am incredibly grateful to Fiona Stevenson who is a fantastic accessibility campaigner for her guidance in this field. So, please when producing information, not only check your work on large screens but on tablets and mobiles as well.

The European Patient Advocacy Group

“Collaboration of VASCERN’s Paediatric and Primary Lymphoedema patient representatives to ensure patient empowerment and transmission of the patient’s point of view”.

The European Patient Advocacy Group works on the principal that we are Expert Patients and therefore best placed to educate patients and their families on the management of their disease such as paediatric and primary lymphoedema (PPL). We can identify and recommend expert centres or other HCPs across the UK and European Union. Patient representatives in the UK are L-W-O Community and Lymphoedema Support Network.

This group has successfully published in 2020 and 2021 manifestos with a call to action.

The 2021 manifesto was co-signed by 27 Patient Associations and translated into eleven languages for World Lymphoedema Day in 2021. In November 2021, the ePAGs presented the above Abstract Poster at the ILF Conference in Copenhagen and won Best Poster.

Huge congratulations to Pernille Henriksen, Manuela Lourenço Marques, Eline Hoogstra, Elena Matta, and Carine Mainka for winning this prestigious 1st prize. On behalf of lymphoedema patients I thank you all for the challenging work you do to enable #patientempowerment.

We need your help. L-W-O Community receives no official funding, myself, and our admin volunteers receive no salary. Our time is volunteered freely so that we can improve the lives of others living with lymphoedema. No amount is too small, and any donations we receive are very much appreciated so that L-W-O can continue to support those who live with lymphoedema through education and information. Gaynor

43 views0 comments

October has been the strangest of months there have been some good moments, and some not so good. As a family we have had many falls this month as the clocks go back and we 'fall back' into winter I am in a reflective mood but I am also going to have a rant in this blog so be warned.

On a personal level I had so many plans for the things I would do sadly, due to unforeseen circumstances very few materialised. I did achieve a long-time goal to write more about Cancer Related Lymphoedema (CRL) and Breast Cancer Related Lymphoedema (BCRL) which were published in two separate webpages, which I will write about further down.

Hubby’s and my health took a nosedive and I think between us we spent more time getting blood tests and X-Rays than either of us would like. Now it looks as if we have both got new health issues to deal with. My youngest son, his wife and two young children all had Covid-19, probably came from the schools, but who knows. Thankfully, both my son and his wife were double jabbed. As you can imagine we were on edge the whole time as we nearly lost one of my sons early in the year to both Sepsis and Covid. I am please to say all have come through reasonably unscathed. Really scary two weeks and of course not being able to see the grandchildren was upsetting. So, October has really thrown us all off balance.

The upside is that we celebrated a friend’s 80th birthday and I did get to see one of my friends and have a girly lunch date which is something that hasn’t happened in a long time. Beginning to feel a bit of normality.

My other highlight was the #BLS2021 Virtual Conference which was a great success and there were new learning experiences. The British Lymphology Society (BLS) are also concentrating on lymphatic health which L-W-O has been doing for a couple of years. In addition, there were several great presentations on BCRL which is my type of lymphoedema and in my opinion very much neglected in the past. When I get my head together, I will write a blog on the conference. In the meantime, the blog I have written for Physio Pod’s November news magazine covers some of the conference.

I would like to take this opportunity to thank Jane Wigg for answering our members questions which is a mammoth task and I know how busy Jane is so a big thank you from all of us at L-W-O Community. Mustn’t forget Mary and all the amazing videos she has produced which helps to visualize the answers to our members questions.

I was thrilled to see Matt Hazledine’s book published “How to live better with Lymphoedema – Meet the experts”. It tells the story of Matt’s journey of being diagnosed with lymphoedema in 2011 the experts he met along the way, and his management techniques. There is a chapter from me on the value of support groups like ours.

L-W-O Community’s ethos is all about providing education, information, and community engagement from a patient point of view. Not everyone will agree with what we do and that’s okay. However, having had breast cancer and lived with lymphoedema for over 10 years educating people is so important.

Which is why this part of living with lymphoedema is a difficult topic to cover, but one that is real and hurtful. The topic of other peoples unguarded words have a devastating effect on our mental health and while there is support for those living with cancer through the various cancer charities or online cancer support groups it isn't the same for all. Unfortunately, there is very little professional long-term mental health support for those who have lived with lymphoedema for a number of years. Which is why an online support group like ours become so important, because we provide a place to chat, ask questions, find answers, and have, if necessary, a rant. In simple terms we give our members a much-needed voice. Our support group is friendly, positive and focussed on the management of lymphoedema and understanding lymphatic health. However, apart from highlighting the issue there is very little we can do about the crass and thoughtless comments myself and our members endure. Here is a sample of some of those comments.

To someone who is living with terminal cancer – “I am sure you will get better soon”.

“You didn’t have proper cancer because you didn’t die”.

Member’s family member – “I am sure its all in your head”.

"What your lymphoedema can't be incurable because you look fine".

Grandparent – “You are paying for your mother’s sins”.

Asked by a physio to give a talk to students so that they could see her lymphie legs one student said, “Gosh they look like chipolata sausages”.

Sadly, the ‘you are just fat remark’s' whether directed at a limb or the whole body are all too common, too numerous to mention and quite frankly inexcusable.

I could fill several pages of how thoughtless comments can have a devastating effect on our members mental health and this is one reason we need to do so much more to educate family, friends, and the public on what it is like to live with lymphoedema whether it is genetic, cancer related or from trauma or injury.

To be diagnosed with any form of cancer can be devastating but to then be diagnosed with lymphoedema as a direct result of cancer treatment is a double whammy. Once the lymphatic system is damaged, we focus on the successful ways of managing lymphoedema. Therefore, our new cancer related lymphoedema webpage explains what can cause CRL and how to lower your risk and the treatments options available.

After treatment breast cancer related lymphoedema can cause damage to the lymphatic system and therefore we focus on supported management through a qualified lymphoedema specialist. However, lymphoedema does require those of us who live with this condition to treat and selfcare for ourselves daily. Therefore, this webpage concentrates on the symptoms of lymphoedema, recognising changes and reducing risk, recognising infection, reducing, and treating infection plus much more. So do look at both pages.

November L-W-O Community will be focussing on selfcare week so do join us and please share our posts.

One final word from me for October. We receive no official funding, myself, and admin volunteers receive no salary. Our time is volunteered freely so that we can improve the lives of others living with lymphoedema. No amount is too small, and any donations received are very much appreciated so that L-W-O can continue to support those of us who live with lymphoedema through education and information. Gaynor

72 views0 comments