ÃÛÌÒAPP
A new website has been launched today by the (ÃÛÌÒAPP Mechanical Ventilation in Partnership) Group for patients with Chronic Obstructive Pulmonary Disease (COPD) and their family carers.
The new site has been developed for those who want to know more about home mechanical ventilation (HMV), and how it works at a practical level. It provides access to useful information, troubleshooting and stories from patients.
“Our aim is to provide an innovative and informative digital platform to support patients who have been prescribed HMV, as well as their family carers, and clinicians,” explains Alison Armstrong, Chair of the HMViP Group and Nurse Consultant in the regional long-term ventilation service based at the ÃÛÌÒAPP Hospitals.
“Initially we have focused on COPD but in future we shall expand this to include other conditions for which HMV demonstrates benefit.
“As a group we have a wealth of practical knowledge on how HMV can benefit patients but felt that there was a lack of information easily accessible to those who are less familiar with the treatment.
“We have therefore pooled our knowledge and the experience of our own patients to develop this resource which we feel offers valuable information to those patients still deciding on whether to go down this treatment pathway.
“It also provides information for clinicians who want to understand the effectiveness of HMV for patients with COPD.”
Dedicated to Ronnie Ward – an ex HMV patient
The site, which has been dedicated to the memory of Ronnie Ward, one of the early patients to take part in an HOT HMV trial at St Thomas’s Hospital.
Ronnie, a former naval serviceman had been diagnosed with COPD in 2014 but using HMV meant that he was able to enjoy several additional years at home in Sussex with his family.
Ronnie’s wife Julie says: “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 fairly worrying. 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.”
The HMVIP Group is made up of a multi-disciplinary team representing HMV centres across the UK with a wealth of knowledge and practical experience in this field. It includes respiratory consultants, clinical nurse specialists, clinical academics, specialist respiratory physiotherapists, as well as patients and carers.
The website has been designed to be inclusive, accessible, and easy to navigate with a combination of written information and videos with patients who use HMV.
These videos have been subtitled for those who have a hearing impairment. This provides an alternative means of acquiring information for people who struggle with reading or who are visually impaired.
“Our future plans for the site include expanding the information on other conditions that may benefit from long term HMV, including spinal cord injuries and progressive neuromuscular conditions,” continues Alison.
“We aim to ensure that the information on the site is up-to-date, with the addition of any evidence-based developments, and include new patient stories reflecting other conditions.
“In addition to the value to patients and their carers, we believe that the website will be extremely useful for clinicians who are less familiar with the benefits of HMV and we have a separate section to provide information on the recommended pathway, evidence on research into this area, as well as the cost benefits for patient care.”
The website can be ere.