Spotlight on The Lindsay Leg Club Foundation

I am delighted to announce that we welcome The Lindsay Leg Club Foundation to the Meet the Organisations section of our Lymphoedema United website.

I met the founder, Ellie Lindsay OBE FQNI, a couple of years ago and we immediately hit it off. We both share the same goals, to bring people together and help them in as many ways we can. Since then, I have recorded an episode for her podcast series (which you can listen to here). I was honoured when Ellie invited me to attend a Parliamentary Reception at The House of Commons and I’ve been asked to participate as a speaker at the Lindsay Leg Club Annual Conference in September 2024.

It was high time that I introduced the fantastic work that the Lindsay Leg Club does, by way of a new feature called “Spotlight On”.

‘Spotlight on’ – Ellie answered my questions below:

What is The Lindsay Leg Club Foundation (LLCF)?
The Lindsay Leg Club Foundation (CRN 1111259) (LLCF) was established as a charity in 2005 to facilitate and manage the co-ordinated growth of the Leg Club network and provide Clubs with information, and is totally committed to supporting clinicians, members (patients) and Leg Club volunteers.

What can the Lindsay Leg Clubs provide to people living with lymphoedema?
Leg Clubs are a research-based initiative which provide treatment, health promotion, education and ongoing care for people of all age groups who are experiencing leg-related problems, within a social model of care in the community. Leg Club staff work in a unique partnership with patients (who once they join become members) and the local community. Working to best-practice guidelines they provide a high standard of care in a social and friendly setting that promotes empathy, peer support and informed choice.

When was the psychosocial Lindsay Leg Club model founded and why did you set this up?
The Lindsay Leg Club Model was originally developed in 1995, whilst working as a district nursing sister in East Anglia. With the support of nursing colleagues, GPs and the local community, the first UK Leg Club was established. The concept relies on an understanding that patients’ health beliefs play an important part in treating and managing all aspects relating to individuals experiencing problems of the lower limb.
The core concept of person-centred care and its application to lower limb management is looking at the whole person, not just the venous/lymphatic related issues. This is achieved by considering the needs of the individual using a multi-disciplinary team approach. The values of person-centred care are the practice of caring for individuals (and their families) in ways that are meaningful and valuable, ensuring they have a voice.

As we know, lymphoedema healthcare can be a post code lottery. For people living in the UK that do not receive care from a lymphoedema clinic or therapist, how can they find their nearest Leg Club?
Leg Clubs deliver collective clinical treatment to people suffering with aspects of lower limb conditions in a social, non-medical environment which aim to empower patients, known as Leg Club members, to self-educate, become active stakeholders in their care, and address the social isolation that often accompanies conditions of the lower limb. The international directory is available on the home page of the Leg Club Foundation website: www.legclub.org

Is there a charge for this service and what can they expect when they attend a Leg Club?
The Leg Club nursing teams are employed by NHS local provider services, CCGs and GP consortia and the nurses incorporate the Leg Clubs into their everyday practice. The treatment is free, and refreshments are freely available, for which donations are welcomed. Due to the cost of hiring the venue it is hoped that members will support this by fundraising activities and holding weekly raffles at their Club.

Having lymphoedema can have its mental, as well as physical challenges and can leave people feel alone and isolated. How could attending a Leg Club help with this?
The Leg Club is a social model that places an emphasis on social health, i.e. communication, the prevention of isolation and depression, and the creation of a community within the clinic. The objective of creating a community is to maintain the individual’s social position and to integrate members (patients) into an environment where they can interact with others who are experiencing similar venous / lymphatic / skin related problems.

I understand that the Leg Club is now international. Do tell us more as we have members from all over the world.
The Leg Club model has now been adapted in Australia, Asia, Europe and USA.

How long have you been involved in the healthcare service and what is your role in the LLCF?
After qualifying I began working for the NHS in the early eighties but moved to community nursing in 1988. In 1994 I became a district nursing sister and obtained my specialist practitioner qualification as a community practice teacher nurse prescriber.
I have also been privileged to work with research teams in the UK and overseas, and in 2016 nominated by the international World Union of Wound Healing Societies (WUWHS) president to established and led a WUWHS international scientific task force to investigate and promote patient rights, providing an international framework of patient advocacy and community- based schemes in lower limb care.
Also, I am pleased to have been given the opportunity to work in partnership with the public, patient groups, NHS policy developers, and healthcare professionals to raise awareness of preventative management of all aspects of lower limb-related problems.

Where can my members find out more information about the Leg Clubs?
For more information, please visit the Leg Club directory home page https://www.legclub.org/the-leg-club-directory
As an organisation it was imperative to maintain the social dimension and find alternative channels to engage with Leg Club members and the healthcare professionals who support them.
The LLCF has a far-reaching audience promoting best practice in lower limb care delivery and raise awareness of preventative lower limb condition measures.

To successfully form a strategy to implement these changes the LLCF created a social media and communications committee (SM&CC) to ensure both a team and time was dedicated to identifying ways to digitally maintain social support and improve the spread and dissemination of information.
The SM&CC then took the following steps to deploy its digital strategy:
• Facebook, Twitter and LinkedIn pages, which had already been set up but were largely dormant, were allocated a member from the SM&CC team to manage each platform and increase followers.
• A YouTube channel was setup to disseminate the significant content already available and new content added.

The Leg Club Network joined Health-Shared.com an online platform for sharing information from healthcare providers, but also from people who have lived experience of a condition.
The website, which is a central resource for Leg Clubs, their members, and other interested parties was updated to make it more accessible, intuitive, and user-friendly.

Paper resources were turned into downloadable pdfs which included a series of easy reading tips and guidance to help people with lower limb conditions during the pandemic. These covered topics such as loneliness, exercise, and photographing wounds for remote monitoring.
However, perhaps the most significant step was to introduce Leg Club podcasts. Clinicians, academics, and non-medical colleagues were contacted and asked to speak on a range of holistic topics relating to the whole person. The podcasts had two objectives:
• To replicate the peer support offered within Leg Clubs as a tool to destigmatise lower limb conditions whilst also offering supportive non-medical content.
• To be an informative resource for healthcare professionals involved with or interested in wound care.

What do the next five years have in store for The Lindsay Leg Club Foundation?
It is the responsibility of all members of the board to work together to develop an enduring structure for the Foundation that ensures that it continues to meet its objectives. Our overriding goals must continue to be the support of our growing network of Leg Clubs and the promotion of the benefits of the psychosocial Leg Club model.

For further information visit https://lymphoedemaunited.com/organisations/the-lindsay-leg-club-foundation/

LYMPHALETICS Fun & Educational Day – 21st September 2024

Are you a teenager or a child with lymphoedema or do you know someone who is? Have you heard about the CLSIG – Children’s Lymphoedema Special Interest Group (affiliated with the British Lymphology Society?

Members of CLSIG get together regularly to ensure they are providing the best possible care for children and teenagers with lymphoedema. They also ensure everyone referred are assessed and investigated thoroughly by appropriately qualified/experienced medics and clinicians.

The CLSIG also organise a free event every 2 years -a fun packed day for young people and their families to get together. This year Lymphaletics will be held on the 21st September 2024 in the South of Englandat the Bracknell Leisure Centre, Bagshot Road, Bracknell RG12 9SE.

What can you expect?
Sports, games, fun, meeting other families and people your own age with lymphoedema. Specialist companies will be showcasing their products and services. There’s the opportunity to meet lymphoedema nurses, physiotherapists and therapists from across the whole country, who specialise in paediatric lymphoedema management. All with the theme of fun and education to help you to live better with lymphoedema.

To register your interest please email Jacqueline.bernard@stgeorges.nhs.uk

The CLSIG is writing to invite your son/daughter to LYMPHALETICS in September 2024. The fun day will be supported by the BLS and CLSIG and is aimed at promoting inclusive exercise and movement for children and young people with lymphoedema.

Everyone Active will be helping us run the activities at Bracknell Leisure Centre and it will be further sponsored by various trusted and well-known UK garment manufacturers. Check the centre out.

Activities lined up for the day will include:

Soft play area for babies and toddlers
Swimming
Cycling
Team sports to finish
Golf (Driving range coaching)
Athletics
Racquet Sport/gym coaching sessions
Football
And more….

We hope to have face painting, a magician, a gymnastic display and a sports personality……so watch this space and bring your autograph book!

Lunch will take the form a packed lunch style meal and tea/coffee/soft drinks will be available all day. To ensure catering numbers are correct you will need to register.

It will be a great chance to meet other families as well as lymphoedema nurses, physiotherapists and therapists from across the whole country, who specialise in paediatric lymphoedema management.

In the afternoon there is an educational aspect with Q&A break-out sessions with Lymphoedema consultants from St George’s Hospital, London. There will also be short talks from young adults who have grown up managing lymphoedema and a Healthy Eating session.

Bracknell is Berkshire and 11 miles east of Reading. Access by car is good – between Junction 3 of the M3 and J10 of the M4. Southwestern trains from London Waterloo run regularly. You might plan to make a weekend of the event. There are many local attractions such as Legoland, Windsor Castle and Coral Reef Water World close by. www.tripadvisor.co.uk/Attractions-g227124-Activities-Bracknell_Berkshire_England.html

Accommodation at the close-by Village Hotel can be booked on www.village-hotels.co.uk/bracknell but there are plenty of other hotels in the area.

We look forward to seeing you and your family on the day. You really will make all the difference and we hope you manage to take a lot from the experience.

For further information or to book your place email Jacqueline.bernard@stgeorges.nhs.uk

Charity Event – In Conversation with Dame Judi Dench – 13th May 2024

After the success of an evening with Sir Karl Jenkins and Lady Carol Barratt in 2023, Gemma’s next event is ‘In Conversation with Dame Judi Dench’, compered by Simon Callow CBE. Together with Professor Peter Mortimer, Gemma invites you to attend on 13th May 2024, 6.30-9pm at Claridge’s, London W1K 4HR, starting with a Champagne reception in The Ballroom and legendary canapes. The guest speaker William Repicci, President and CEO, Lymphatic Education and Research Network (LE&RN) is flying in from New York especially. In aid of The Lymphoedema Research Fund at £150 each, tickets can be purchased directly from:

Account Name: St George’s Hospital Charity
Bank: NatWest
Sort Code: 60-14-31
Account No. 64136574

For further information or to RSVP, contact Gemma directly via email at gemmalevine@aol.com

To read about Gemma’s experience with lymphoedema visit our Meet the Member’s section of our website and scroll down to Gemma’s photo. 

To see more products from SIGVARIS, visit our Meet the Supplier’s section of our website. 

During 2023, I organised and hosted six Local Meet-ups in South-East England, uniting the local lymphoedema community in Tunbridge Wells, Maidstone and East Grinstead. These were fairly successful with between 6-10 people turning up to meet others living with lymphoedema to swap tips, experiences and make new friends. The objective of this exercise is to create a local support system so people who wish to stay in touch with a local ‘lymphie’ can do, should they need help or just someone friendly to talk to.

The response on social media has been incredible but I stress that the Meet-ups are only open to members of Lymphoedema United, which as you know, is free to join. I have been asked by so many people “When are you coming to….Torquay, Liverpool, London, Belfast, Norfolk to name a few places. Unfortunately, it’s just me doing this at the moment and I can’t be everywhere as you can imagine. However, in 2024 I will publish some dates for virtual Meet-ups for individual counties. For example, if you live in Hertfordshire, you could join the virtual meet-up on Teams and if you are happy to share your email address, you can put it on the screen after your name. If then, you’d like to arrange a face-to-face Meet-up with someone local to you, that’s up to you to email them and organise.

If these virtual Meet-ups are successful, then I will build in a face-to-face Meet-up when I am in the area combining it with a meeting or conference perhaps.

I am also in talks with a few of my suppliers to agree funding for tea, coffee, soft drinks etc for when we meet in person.

If this is of interest to you, please email me with your name and county you live in, to hello@lymphunited.com

Our two Lymphoedema United Charity Golf Days have raised an incredible £9,370 for the Lymphoedema Research Fund. This year’s event has a lot to live up to!

The day provides golfers with lymphoedema and their loved ones, to meet and play golf with senior management from our suppliers, in addition to meeting others living with lymphoedema, in a relaxed and enjoyable setting. Friendships have been made for life!

Our third charity golf day will be at The Belfry in East Midlands on Thursday 6th June 2024.

Full details are on our website https://lymphoedemaunited.com/information/charity-golf-day/

Once again, we have secured some excellent speakers, including two Professors who specialise in lymphoedema treatment and one of the country’s most experienced therapists.

As usual, there will be games, putting competition, raffle, auction, in addition to breakfast, golf and dinner, plus of course, lots of fun and laughter.

100% of profits raised will be donated to the Lymphoedema Research Fund.

If you are interested in the event and wish to reserve your place, please email matt@lymphunited.com as places are limited.