World HMV Day – 20th May 2024

We launched World HMV Day last year, and we had a lot of very positive feedback! 

The aim of the day is to raise awareness, share knowledge, improve education amongst clinicians and HMV users, and, most importantly, to support and represent HMV patients, as well as their families and carers.

 We want to build on this for World HMV Day 2024 and would like to enrol the help and support of the HMV user community. So if you are an HMV user, we need your help!

 We are promoting an awareness campaign called #HMVandMe. We’d like to invite you to share your story on social media by posting a short video which illustrates what using home ventilation means to you.

 By taking part in World HMV Day, you’ll be helping us to raise awareness of the important and positive impact that home ventilation can have on people’s lives. We want to show that HMV can provide independence and the ability to live a better quality of life for those who need support with their breathing.

 As a ventilator user or carer, you are an expert, so we want to hear directly from you about your experience. This will help others understand what to expect and what a ventilator will allow you to do, whether that is making a cup of tea for friends, going to the shops, going on holiday or taking part in outdoor activities.

 Steps to creating your #HMVandMe video:

The Home Mechanical Ventilation in Partnership would like you, as a ventilation user or carer for a ventilator user, to record a short clip (30-60 seconds) on your phone to reflect #HMVandMe.

 We’d like you to tell us:

  • your name
  • the condition you have – if you are happy to share (or in the case of a carer, the condition of the person you care for)
  • What you like doing (hobbies, seeing friends, etc)
  • when you use your ventilator (when you are tired, at night, x number of times in an average day or all the time)
  • how ventilation has helped you – has it improved your sleep/energy, enabled you to undertake particular tasks, given you more independence, or enabled you to do something out of the ordinary.
  • How using ventilation doesn’t prevent you from ‘living your life’ the way you want to live.

Save your video and share it on your social media channels – Twitter, Facebook, etc. using the hashtags #HMVandMe, #WorldHMVDay and #Addinglifetoyears.

Also if you are using Twitter, please tag @HMViPGroup  and consider joining our Facebook group https://www.facebook.com/groups/1354156945440480/.

HMV can benefit patients with conditions that damage the lungs, such as COPD and conditions that restrict the movement of air in and out of the body, including Obesity, curvature of the spine (also known as kyphoscoliosis), and neuromuscular conditions such as Motor Neurone Disease, Duchenne Muscular Dystrophy.

 To download our logo, please click here. Please share this and our hashtags #HMVandMe, #WorldHMVDay and #addinglifetoyears.

Cath

Abi

Sharon

Dean

Claire

Jon

Suzanne

Bobby

Vicki

Why is World HMV Day on 20th May?
World HMV Day and the HMViP website are dedicated to the memory of Ronnie Ward, who was a participant in the HOT-HMV trial [3].

Ronnie, a former naval serviceman, was diagnosed with COPD in 2014. Using HMV reduced his risk of being hospitalised and enabled him to enjoy several additional years at home in Sussex with his family.

Ronnie’s wife, Julie, said: “I can’t stress strongly enough what it meant for us as a family and for Ronnie to have this additional time.”
Julie continued:

“Without HMV I am convinced we would not have had those extra years of living a relatively normal life. Before starting HMV, Ronnie was admitted to hospital every few weeks but once he started on the machine, he didn’t have any hospital admissions and his care was managed at home. I can’t stress strongly enough what it meant for us as a family, and for Ronnie, to have this additional time.

“There wasn’t a lot of support for family carers at the time that Ronnie was using the device, so it was quite alarming at the beginning. Even though I am a nursery nurse, I wasn’t confident that I was giving Ronnie the right support. 

“If the HMVIP website had been available eight years ago, it would have made my life a lot less stressful! I am therefore delighted to support the work of the group and to honour Ronnie’s memory by sharing my experience with other family carers.”

To listen to Julie’s and Ronnie’s story, click on the link below:
https://hmvip.co.uk/carer-story-julie

References:
[1] https://thorax.bmj.com/content/78/5/523 Murphy et al, Cost-effectiveness of home non-invasive ventilation in patients with persistent hypercapnia after an acute exacerbation of COPD in the UK)
[2] https://hmvip.co.uk/research-and-evidence
[3] https://erj.ersjournals.com/content/52/suppl_62/PA1679