Person-Centred Care

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 lymphatic 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 virtual Patient Day 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 and that L-W-O Community will be involved as a Patient Stakeholder

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:

• Why don’t we have an International English Framework?

• Why does England not have a model of care for lymphoedema like Wales?

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 first prize. On behalf of lymphoedema patients I thank you all for the challenging work you do to enable #PatientEmpowerment.

Please Donate

We need your help. L-W-O Community receives no official funding, me, 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

Fall back into Winter

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

Please donate

Comfiwave Breast Band

This product was shown for the first time at the 8th National Lymphoedema (virtual) Conference, presented by Sue Lawrence, Clinical Nurse Specialist within the topic ‘Management of Breast Oedema’. (Sponsored by Haddenham).

As a patient and patient advocate, I rarely get excited when manufacturers introduce a new compression garment. This is because as a breast cancer patient, I have felt that my type of breast cancer related lymphoedema (BCRL) has not been catered for.

My history

After a routine mammogram in 2010, I was diagnosed with a DCIS (ductal carcinoma in situ) - in simple terms this means the cancer was like grains of sand in the tissue, not a lump and wouldn’t have been found without a mammogram. I had the tissue removed via a wide local excision (WLE) also known as breast conserving surgery plus two sentinel nodes removed. This was followed by 15 days of radiotherapy treatment to mop up any cells that might remain.

My prognosis was good from the start, I was happy to receive treatment so quickly and even happier not to have had a mastectomy. As a direct result of radiotherapy treatment, I was diagnosed with lymphoedema a condition I had never heard of. To be exact I have breast and posterior chest wall lymphoedema. At that stage it never entered by head that I would spend the next four years searching for a bra that would fit properly or one I could feel comfortable wearing. Neither did I imagine that I would not be able to wear matching underwear again. To some that might seem trivial, after all most people will not see the underwear, you are wearing, but it does play a big part in body image and the feeling of wellbeing.

Breast Lymphoedema

As a society, we tend not to think about the things we cannot see. There are some very brave ladies who can talk about breast cancer and having a mastectomy and those of us who have had a WLE, talk about our breast cancer in general terms. However, we tend not to talk about the difficulties of controlling our breast lymphoedema or the difficulties that this brings in finding the correct bra. This attitude of “You are alive, aren’t you?” Sweeping statements like this only exasperate the feeling many women have over body image and walking around with what feels like a rugby ball attached to their chest.

So why did it take so long to buy a bra that was comfortable for me? Breast lymphoedema changes every day, you have good days and bad days, sometimes slight puffiness, swelling that is manageable and other days when you feel very puffy, and you are very swollen, and the swelling is a lot harder to manage. This is not just when get up in the morning but continues throughout the day. For example, breakfast time you could be a D cup by lunch time you could be a DD cup and by late afternoon a DDD and who knows what you could be by the end of the day. Skincare, movement, hydration, knowing which foods trigger more swelling all become part of your daily selfcare routine and ultimately your bra becomes your compression.

While I knew I needed compression I simply could not wear the type of bras that were available. Finding a bra with cotton linings that allow your skin to breathe, wide sides that would not allow the swelling to bulge over, straps that did not dig into your shoulders leaving deep indentations. I wanted something that would give me the compression I needed but was comfortable to wear and did not make me feel like I was in a strait jacket.

Innovation

Sitting happily watching the conference and suddenly on the screen the Comfiwave Breast Band was being presented. Initial thoughts “I want one”. That evening I shared the image of the band on our social media. Twitter lit up as did LinkedIn. Interest was phenomenal.

I was lucky enough to speak to Natalie Phillips at Haddenham who suggested if I wrote about the Comfiwave Breast Band she would send me one. Who is the Breast Band is aimed at?

• For those with Lymphoedema extending into the breast/s and or lateral chest wall.

• Aids softening of tissues as well as reduction of oedema.

• Suitable immediately post-surgery, following breast augmentation or for those who have had breast conserving surgery such as lumpectomy.

• Can be used over dressings for covering wounds, including fungating lesions

• Useful in palliative care, where traditional compression is not suitable.

• For use at night-time to aid comfortable sleep.

• Can be used separately to or in combination with other types of compression bras and with Kinesiology taping applications for Lymphoedema.

VAT Relief

The Comfiwave Breast Band has been discussed across several of the social media support groups and while comments have been extremely favourable there has been some mutterings about the cost because at the point of writing this is not readily available on prescription. Having said that for those who have lymphoedema and some other conditions VAT relief is available. In addition to this at least one of L-W-O Community’s support group members has had this approved and ordered by her clinic. So, if you have breast lymphoedema do ask your clinic whether you are eligible.

My thoughts

I spoke to Natalie late on the Friday afternoon and was surprised to receive by Breast Band by the Saturday lunch time, extremely impressed with this service. I ordered the XL and initial thoughts I had ordered the wrong size, but I hadn’t. I waited until teatime when I just could not wait any longer. Because I have problems with my hands, I was concerned I wouldn’t be able to get the band on. I needn’t have worried it went on with ease. There is a nice, stitched feature on the back to show the right way up and distinguish from the front and back that does not interfere or protrude when you wear the band. I wore it for five hours. Concerned I might not be able to remove it properly hubby was on standby, but I need not have worried I removed the band with the same ease that it went on.

There were nice little ridges on my skin but not indentations to show the band was working and even after the first wear my skin felt softer. The next three days I wore the band for 12 hours each day. I did not feel as if I was wearing compression. There was a clear reduction in both front and side of my breast which was most evident when I put on my normal bra.

The next test would be to see if I could wear the band overnight and found that I could. In the UK we have recently been through some extreme high weather temperatures, and I found the band to be cool and comfortable. What I really liked was I felt no restriction of movement and was able to forget I was wearing the band. Best of all it did not slip, ride up or slide down and I could feel the difference when I took the band off.

Finally, the next test would be how it would wash. Initial wash it went on 30° in the washing machine and then was dried flat on a towel. You can tumble dry on a low heat. It came out of the washing machine as new, so absolutely thrilled.

Game Changer

The Comfiwave Breast Band is a game changer for people like me who have felt totally neglected in the past and I to now have compression that will improve the quality of my life.

In addition to this piece, I was asked to do a video for Haddenham which was replayed several times at the #BLS2021 Conference. This blog was described by BLS/Haddenham as a 'Power Report'