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.
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
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