News

Welcome to the British Lymphology Society’s 2020 campaign: EveryBodyCan

Lymphoedema affects over 400,000 people in the UK and the numbers are increasing. To find out more about Lymphoedema and what the lymphatic system does, see What is Lymphoedema?

One of the best ways of keeping your lymphatic system healthy is to be active. The lymphatic system does not have a pump, like the heart, so we need to help it along by using our large and small muscles. Any movement is better than none and there are activities suitable for all abilities.

Access the resources here.

Videos to help you manage your lymphoedema

A series of 16 online self-management videos, initially funded by Welsh Government, have been made by Lymphoedema Network Wales, and were produced by eHealth Digital Media.

The videos are informative and practical, aimed at giving information directly to those living with lymphoedema, they also include first-hand experiences from people living with the condition.

The videos can be viewed at www.medic.video/lsn-lymph

If you have been diagnosed with lymphoedema the following videos may be particularly useful to help you keep things managed as well as possible.

  • Skin care
  • Exercise class lower limbs
  • Exercise class upper limbs
  • Simple Lymph Drainage (SLD) lower limbs
  • Simple Lymph Drainage upper (SLD) limbs
  • Compression garments

Link: 

http://www.medic.video/lsn-lymph

Feedback from the 2nd All Ireland Lymphoedema Conference, Nov 2019

The 2ndAll-Ireland Lymphoedema Conference

An Grianán, Termonfeckin, County Louth, A92 X9TF

Wednesday 13thNovember 2019

The Health Service Executive (HSE), Public Health Agency (PHA) and Lymphoedema Network Northern Ireland (LNNI) were delighted to introduce Ms Rebecca Elwell as their keynote speaker at the 2ndAll Ireland Lymphoedema conference. Ms Elwell is internationally recognised as a leader in the development of lymphoedema services, specifically the “Red Legs pathway” dedicated to ensuring differential diagnosis of potential lower limb complications addressing misdiagnosis and management.

 Dr Gavin Hughes, Deputy Director / Technical Manager Surgical Materials Testing Laboratory, NHS Wales Shared Services Partnership also presented on the national compression class and drug tariff project.  

The programme also reviewed progress of the HSE Lymphoedema recommendations and highlighted innovative work from across the United Kingdom and Ireland. The event was funded by the HSE, HSC, CAWT and LNNI. 

The event was attended by 93 delegates and supported by 14 industry partners who provided an excellent exhibition area for delegates to investigate new systems of work and product innovation. The feedback has been fantastic, and the networking opportunity was very much appreciated by all (along with the fabulous An Grianán hospitality)!  

 

(Photos of the All Ireland Lymphoedema conference speakers)                 

13 November 2019 - All Ireland Lymphodema Conference 2019: Registration and Programme

All Ireland Lymphodema Conference 2019 at An Grianan

Termonfeckin, A92 X9TF Drogheda, Ireland

Register here: https://www.eventbrite.ie/e/all-ireland-lymphodema-conference-2019-tickets-60463592232

Venous Leg Ulcers: A Silent Crisis

Pressure sores, wounds and ulcers of all types carry a heavy burden on the health and wellbeing of people across the country. They force people to learn to live with chronic pain and disrupt their lives significantly – taking a heavy toll on their mental health. They also weigh heavily on the system, as the cost of managing wounds is thought to be over £4.5 billion a year for the NHS – a figure that rivals the costs associated with other high profile conditions, such as obesity. Management of wounds requires constant attention to support healing and avoid reoccurrence. If the NHS is to reduce the burden of wounds, the system needs to focus on the cause of the wound and treat it effectively. One specific type of wound, venous leg ulcers, may benefit from a different approach.

 

 

Launch of the new voluntary Lipoedema Registry, in support of Lipoedema UK

Lipedema Foundation Registry (LFR) is an online registry established to help our lipedema community, including affected individuals, families, clinicians, and researchers. Its goals are to: learn more about lipedema; understand barriers to diagnosis; better manage symptoms; assess quality of life impact; and develop new treatment approaches.

The Lipedema Foundation (LF) has developed an “Initial Survey” that should take approximately 60 minutes to complete. It will help provide direction for what types of research we should fund next. It will ask for basic health information (such as “Have you been diagnosed with lipedema by a physician?”) and for specific information related to current research (such as “Are you allergic to iodine?”). The Initial Survey also requests information that may involve more work than just answering questions (such as “What is your hip circumference?”). You do not have to answer all questions.

The registry platform works best on computers or laptops. For added security, you may wish to access the Registry using the Google Chrome browser and registering with a Gmail address.

In the future, LF will develop additional surveys that will include more detailed questions around topics such as: Treatments, Family History, Path to Diagnosis, Symptoms, and Co-morbidities. Over time, the registry may grow to include integrations with clinical teams, research teams, biobanks and/or genetics repositories.

LFR is a program of the Lipedema Foundation (LF) and has been developed with the help of patients, consultants at RTI, clinicians, researchers, lawyers, and people who work at the platform’s company, REDCap Cloud. We especially want to thank people and teams whose surveys came before ours: LipoedemaUK, Dr Karen Herbst, Tilly Smidt, Vanderbilt UMC, Joanna Dudek, and others.

LNNI launches apps for professionals and service users

© LNNI Healthcare Professional Calculator App

This App was created in partnership with the Ulster University in recognition of the lack of consistency in calculator models and availability of remote access. 

It is designed for healthcare professionals to:

  • ensure regional practice is supported by a consistent limb volume and Body Mass Index (BMI) calculation format
  • have available access to calculations by PC, phone or tablet
  • reduce the cost of purchasing and up-keep of current limb volume calculators/software

A set of guidelines has been developed to support initial use. Download the guidelines here. Please note that HSCNI/NHS users may not be able to download this file at work due to security restrictions, so please do so from a home computer. Instructions on adding the APK file to your Anroid mobile/tablet device can be found here.

Download the app APK file.

This App was developed in 2019 by the Lymphoedema Network Northern Ireland (LNNI), in partnership with the Ulster University, and is legal property of LNNI. Copyright LNNI 2019.


© LymEx App – support for those with lymphoedema

Accessed from the App Store (free)

LymEx has been created by someone with lymphoedema to help others with this condition.

Patient information leaflets developed by the Lymphoedema Network Northern Ireland (LNNI) have been re-created in an e-format to be freely available via all tablets and phones.

The App includes guidance on:

  • The 4 key messages to support self-care
  • Skin and nail care
  • Simple lymph drainage (arm, leg and head & Neck)
  • Garment use and care
  • Exercises to encourage good lymph flow (arm and leg)

Copyright LNNI 2019.

LNNI staff support the national Legs Matter campaign

A Great Big Week For Legs & Feet’ - first Legs Matter Awareness Week kicks off June 3-7 2019

Every two hours in England, someone loses their leg due to a non-healing wound -  ‘A Great Big Week For Legs & Feet’, the first, national Legs Matter Awareness Week, June 3-7, is being held to urge people to ‘stand up’ to one of the UK’s biggest health challenges.

Each year, it is estimated that more than a million people in the UK suffer from serious leg and foot conditions and the resulting delays to correctly diagnose and treat them can cause unnecessary suffering, disability, amputation and even death.

Now a group of the UK’s leading lower limb clinicians, led by the Tissue Viability Society, have joined forces to encourage people to check their legs and feet, to get medical help fast and to highlight what level of care patients have a right to.

Costing the NHS up to £5.3 billion annually, leg and foot ulcers, oedema (a failure of the lymphatic system), narrowing of the arteries and other serious problems need to be treated quickly and correctly to reduce the risk of non-healing wounds, secondary health problems and deteriorating health.  An NHS England study estimates that having effective care early, reduces leg ulcer healing times from around two years to just a few months and is 10 times cheaper. But many patients suffer unnecessarily for several years due to a lack of knowledge and not accessing the right care.

Mum-of-two Tracy Goodwin’s leg ulcer was so painful and debilitating, that at one point she asked doctors to amputate her leg.  Now as part of Legs Matter Awareness Week , the 39-year-old from Wakefield is urging others to seek medical help if they are worried.

She said: “I developed blood clots in my leg when I was pregnant, which led to me developing ulcers. At my lowest point, they affected every part of my life and the pain got so bad I even asked for my leg to be amputated. Instead they performed a deep vein transplant, which helped ease the pain.

“People should seek urgent medical advice if they think something is wrong with their leg or foot because I delayed going to see the doctor as I didn’t realise I had an ulcer.”  

Supported by NHS England, a group of eight health care charities and not-for-profit organisations have come together to tackle the issue. As part of this, they have produced an online checklist for people, including health care professionals, to recognise the signs and symptoms of lower leg and foot problems.

Leading clinicians from The Tissue Viability Society, The British Lymphology Society, Accelerate CIC, The College of Podiatry, The Society of Vascular Nurses, The Lindsay Leg Club Foundation, Foot in Diabetes UK and The Leg Ulcer Forum have formed Legs Matter and want to ensure that anyone with a lower leg or foot problem understands their condition and gets the urgent care and support that they need. 

A patient will encounter a number of people along their journey to diagnosis and treatment – from the pharmacist, to the practice and community nurse, to the GP and beyond. The Legs Matter coalition want to make sure that every person, including the patient, has the information that they need to take the best steps towards healthy, pain-free legs and feet.

Legs Matter chair Dr Leanne Atkin, who provides clinical care for Tracy, is urging people to play their part by checking their own and others’ legs and feet for 10 possible problems including swollen, tender legs or sores that won’t heal and to get involved by holding their own ‘Legs Matter Natter’, to take action with the ‘Legs Matter Pledge’ and by ‘Sharing Your One Big Thing’ - one important fact people wished they had known earlier about leg and foot health. 

The vascular nurse consultant from Pinderfields Hospital, Wakefield said: “There are more than a million people suffering with lower leg and feet disorders - many of which are life changing. These conditions are often overlooked by patients, carers and clinicians. We are passionate about changing this. 

“We want people to check their own and others’ legs and feet and to speak to a pharmacist, nurse, podiatrist or GP if they are concerned. Getting early treatment makes all the difference and prevents the condition becoming more serious.” 

You can find top tips for leg and foot health in the Legs Matter leaflet and order a free Action Pack.  Let us know what you’re up to and what you’ve pledged on Twitter or Facebook using the hashtag #legsmatter, or drop us an email.

British Journal of Nursing Awards 2019 success for SEHSCT Team

2nd prize in the 2019 BJN Chronic Oedema award was presented to Vivienne Murdoch for her role in the SEHSCT’s project looking to educate GP Practice nursing teams within the trust area. The aim was to ensure that all patients with simple chronic oedema in each practice were identified, correctly diagnosed and managed, and that the permanent staff in each practice gained a full knowledge of simple oedema management. Additionally, those identified with more complex oedema were referred to the lymphoedema team. 

The project ensures correct management of each patient according to hierarchy of need, reduces actual GP footfall and ensures improved prescribing and therefore financial prudency.

The project was funded in partnership by the SEHSCT and the Local Commissioning Group, and has successfully received a 2ndyear of project funding.

The other team members were Helen Creighton (Pharmacy) and Pippa McCabe (lymphoedema).

Well done SEHSCT team!!

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