Using technology to support caregivers of people with motor neurone disease
Pilgrims Hospices is working with researchers at King’s College London to help identify family caregivers of patients with motor neurone disease (MND) who might benefit from regular contact with a peer supporter.
Peer support is the provision of emotional and informational support from people who have experienced the same health problem and have similar characteristics to those receiving support. The peer support is a 12-week programme where the caregiver will have online contact with their peer supporter at least once a week, using an easy-to-use app called aTouchAway, very similar to WhatsApp.
Talking to a person who has been there, and is able to share their own experiences, offers real hope to individuals who may not have any at that particular point in their life.”
A recipient of peer support
This study, funded by Marie Curie and the MND Association, islooking at the impact that caring has on wellbeing and aims to understand how user-friendly and acceptable the online peer support programme is to family carers in the study. As it is a randomised controlled trial, participants will be randomised to receive either the programme or their usual support.
Caregivers might be suitable to take part in the programme if they:
Are 18 or over
Are caring for someone with MND who is being considered for or receiving assistance for breathing, coughing or receiving feeding via a tube
Are able to speak and read English
Have access to the internet and a computer, tablet or smartphone
The team is also looking to train further peer-supporters to assign to a caregiver on the 12-week programme. They would be interested to hear from people whohave had lived experience as a carer for someone with MND and feel they could offer this support to a current carer.
Pilgrims Hospices cares for thousands of local people each year, free of charge, during the most challenging time in their lives. They offer care and support in people’s own homes, in the community and in their inpatient units as well as running a 24-hour advice line.
23rd January 2020
Sarah’s seaside half marathon for Pilgrims
Sarah Stirrup from Whitstable will run the Brighton Half Marathon in aid of Pilgrims Hospices on Sunday 23 February 2020. As a Research Nurse for the charity, she understands how vital fundraising is to keep local hospice services available to those in need.
Although not always a natural runner, Sarah has grown to love it and is now a member of the Speedy Pluckers running club. She said: “When I started the ‘park bench to parkrun’ challenge 18 months ago (crying at the top of the second hill for the first three weeks!) my aim was to be able to walk or run 5k at Whitstable parkrun every week. Little did I know that I’d go on to not only love parkrun and join my local running club, but also enter a half marathon. Oh, and become known as ‘Speedy Barbara’ (of course, the joke is that I am still very slow!)”.
My mantra has become ‘seize the day’ so that I make the most of my own life. When I run, I hold in my heart all the people I’ve known who are not here to run with me.
Sarah
As well as generating vital funds for Pilgrims, Sarah feels strongly about raising awareness of the compassionate care it provides to local people.
She continued: “As a nurse, I’ve known lots of people cared for by Pilgrims. The charity does so much, and not just at the very end of a person’s life. It looks after families, helps people to manage their symptoms and offers support through its Therapy Centres, physiotherapy, counselling and so many other essential services.
“Pilgrims is also at the forefront of palliative care research. Research into how we look after our patients and provide symptom control is really important, ensuring the care they receive is evidence-based.”
Leila Ilkhan, Community Fundraising Manager, said: “We really appreciate supporters like Sarah who take on charity challenges to raise vital funds for Pilgrims. It is because of their commitment and effort to training and fundraising that we can be there for patients and families who need us, for as long as they need us.”
Sarah is being supported in her fundraising by family and friends, including her partner Tony and two children Magda and Nat. She added: “As a charity, Pilgrims receives most of its income from fundraising, so it’s important that we all do what we can. I play the hospice Lottery too, though I haven’t won yet! There are so many opportunities to get involved and raise money or volunteer.
“As well as raising funds towards Pilgrims’ vital work, I’d like to gain more exposure for the work we do here. Pilgrims supports people with a life-limiting illness to live the best life they can in the time they have left. I think we can all learn from that. My mantra has become ‘seize the day’ so that I make the most of my own life. When I run, I hold in my heart all the people I’ve known who are not here to run with me.
“I’d love it if I inspired others to take on a challenging event and change their lives – if I can do it, anyone can!”
If you or someone you know is coping with a life limiting illness and you think you may benefit from Pilgrims free services, talk to your GP or Healthcare Professional about your options or click here to read about our Wellbeing Programme.
