World HMV Day 2024
- 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.
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