World HMV Day 2023

The first World HMV (Home Mechanical Ventilation) Day will be held on 20th May 2023 and is organised by the Home Mechanical Ventilation in Partnership (HMViP) Group.

What do we want to achieve?
The aim of the day is to raise awareness, share knowledge, improve education amongst clinicians and HMV users, and to support and represent HMV patients, as well as their families and carers.

We want to do this by sharing our common interest in HMV with as wide an audience as possible and with a view to sharing an understanding of the indications and benefits for people using HMV.

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. The HMViP Group is encouraging patients with these conditions to visit the HMViP website (www.hmvip.co.uk) to find out more about HMV, how it works and the benefits others have experienced as a result of their treatment.

We’re calling on NHS Trusts to consider improving HMV access for patients with chronic respiratory failure, given that it is a cost-effective intervention that can reduce hospitalisation risk and improve symptoms and quality of life in certain patient groups. [1]

UK and international guidance now recommend that HMV be offered to appropriate patients with COPD. [2]

What you can do to help
To show your support for World HMV Day, we ask you to:

  1.  Share our logo and strapline on your social media channels.
  2.  Send details of our website HMVIP to five people who you think would benefit as an HMV user, carer, family member or clinician.

To download our logo, please click here. Please share this and our hashtag #addinglifetoyears

To follow us on Twitter, please go to @HMViPGroup; visit us on LinkedIn here or join our Home Mechanical Ventilation Facebook Group

Click here to download the World HMV Day press release.

Help us to spread awareness of how HMV can benefit patients with conditions that damage the lungs, such as Chronic Obstructive Pulmonary Disease (COPD) and Cystic Fibrosis (CF), or conditions that restrict the movement of air in and out of the body, such as Motor Neurone Disease (MND), Duchenne Muscular Dystrophy (DMD) or Obesity Hypoventilation Syndrome (OHS).

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

Click here to download the World HMV Day press release.