Tag: research

    26th March 2025

    Helping to shape ambulance services for people in the last year of life

    Pilgrims Hospices is collaborating with a research team at the University of Southampton, the University of the West of England and South East Coast Ambulance Service NHS Foundation Trust to invite people who have had experiences of ambulance callouts to learn about their views and help shape ambulance services in the future.

    The research, called the ParAid Study and funded by Marie Curie, is evaluating how different ways of delivering services influence paramedic practice and experiences of individuals at end-of-life.

    Paramedics are often important to patients in the last year of life (end- of-life). We know that 999 calls are increasing for individuals and their families at end-of-life, which may be because services in the community are under pressure e.g. those provided by family doctors and community nurses.

    Little wide-scale research has been carried out to understand the contribution played by paramedics in these situations and how this might be improved.

    From practice, it is known that paramedics attending patients at end-of-life face complex issues, such as:

    • Not knowing the patient or their family
    • Lack of availability of patient history
    • Fear of doing wrong
    • Issues with family conflict
    • A lack of healthcare professionals to handover to out-of-hours, if the patient is to remain at home.

    These issues can mean people are admitted to hospital when circumstances mean they could be cared for at home.

    Natasha Campling

    Dr Natasha Campling (Associate Professor, School of Health Sciences, University of Southampton), who is leading the research, said:

    “We have already carried out a large-scale survey of paramedics throughout England to understand their professional practice and what factors influence this, and are now conducting in-depth case studies (collecting information from patients, carers and healthcare professionals) to examine different ways of delivering services. It is important to evaluate ambulance service delivery and understand how the best parts of service provision can be incorporated into other services to improve the quality of care and support provided to patients and their families during this crucial period of time. This may prevent unnecessary hospital admissions at end-of-life, which often leads to people dying in hospital.”

    If you have had an ambulance callout in recent months, are aged 18+, living in your own home, in the last year of life, or a current or bereaved carer for someone in this situation, you may be eligible to take part in a one-off interview about your experience. A £25 voucher will be offered to those who take part.

    If you are interested in taking part, please contact the Research team (and see the study poster for further information):

    Email: [email protected]
    Telephone: 02380 599 231
    Online form: forms.office.com/e/adbmHDSc1b

    Thank you,

    ParAid study team

    Each year, Pilgrims Hospices care for thousands of people across east Kent, with services provided from its three hospice sites in Ashford, Canterbury, and Thanet, as well as in patients’ own homes. It costs over £17.2 million annually to run these services, much of which comes from the generous support of the local community.

    6th February 2023

    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, is looking 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 who have had lived experience as a carer for someone with MND and feel they could offer this support to a current carer. 

    If you would like to find out more about the project, contact Charlotte Brigden, Research Facilitator on 01227 812 625 or email [email protected].

    Alternatively, you can contact the study team directly at: [email protected]

    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’d like to support Sarah, visit her JustGiving page to donate.

    You can also follow her on Instagram @speedy_barbara and follow the Pilgrims Hospices Research team on Twitter @PHEKResearch.

    Feeling inspired?

    Check out the Pilgrims events calendar and find an event or challenge to sign up for or learn more about other ways you can get involved.

    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.

Go back