World HMV Day
20th May 2025

#HMVcareiskey

This year we’re celebrating the incredible work of caregivers who support HMV users, and their role in #addinglifetoyears, helping those who use HMV, whether at night, for part of the day or 24 hours a day, to live their lives to the full.

Help us by following our social media and sharing our posts with your networks.

Podcast Conversations

Earlier in May, we filmed two podcast conversations to explore care in the HMV community.

These were chaired by HMViP member Lisa Emmett, lead physiotherapist and joint clinical lead with the home ventilation team at Leeds Teaching Trust.

Podcast 1

What HMV users and their families should consider when appointing a carer, whether an agency or a PA

The first of these conversations looks more closely at the options for care. We consider unpaid carers, personal assistants and agency care, considering the benefits of each option and exploring when one option may work better than another.

Our thanks to the participants:

  • Sarah Rose, HMV user, member of the HMViP and Co-Chair of the Trustees, Pathfinders Neuromuscular Alliance
  • Sue McCallum, personal assistant to Sarah
  • Kathryn Shackleton, carer of husband Iain and member of the HMViP
  • Kate Steel, Paediatric Clinical Director, Health &Social Care Services (HASCS)
  • Tom Nicholson, carer to brother Stephen and family friend Ben

Podcast 2

The carer experience and support options available

In the second podcast, the conversation focuses on the role caregivers in enhancing the quality of life of HMV users by providing care at home, and the support available to caregivers from NHS ventilation services and respite care.

Our thanks to the participants:

  • Alison Armstrong, Chair of the HMViP and Consultant Nurse for the regional North East Assisted Ventilation Service
  • Martin House Hospice: Lucy, Katie, Fi and Carly
  • Kathryn Shackleton, carer of husband Iain and member of the HMViP
  • Kate Steel, Paediatric Clinical Director, Health & Social Care Services (HASCS)
  • Tom Nicholson, carer to brother Stephen and family friend Ben

 

What is World HMV Day?

 We launched World HMV Day in 2023 and our aim 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.

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