“I think abuse like this is rife. It’s like this taboo – it’s whispered about but never spoken out loud, There’s the two things, cancer and domestic abuse. That’s why I talk about it, and I want nurses and people like that to not be afraid to ask if they think someone’s being abused.”
Nicky cancer and abuse survivor - Hear Nicky's story here on ITV Meridian
Domestic abuse (DA) affects more than 2 million adults in England and Wales. It does not discriminate - costing the healthcare system £2.3 billion a year.
People living with a life-limiting illness are at higher risk because they are vulnerable and can struggle to get help. Abusers can deny them medical treatment and care making their illness and quality of life worse.
Care professionals are ideally placed to spot the early signs of abuse and help.
Wednesday 9th October was the official launch in Southampton, of The DALLI (Domestic Abuse and Life-Limiting Illness) Toolkit; a training and support resource for those care professionals.
The DALLI Toolkit is the first of its kind to support hospice and palliative care professionals as well as those in local authorities or the third sector to identify and respond to domestic abuse in the life-limiting illness context. Funded by National Institute of Health and Care Research (NIHR) ARC Wessex* it has been co-developed by people who have experienced DA, health and social care professionals and specialists to support professionals spotting signs of abuse at end of life.
The end of life charity Marie Curie has provided funding1 to produce a DALLI video and to launch the toolkit.
It has been introduced into national organisations like Marie Curie, Age UK, and Macmillan as well as four independent hospices. Since its introduction hospice staff report having more confidence to identify and respond to victims, with an increase in patients’ willingness to disclose, support put in place, and enhanced patient safety.
Dr Michelle Myall, has led the DALLI study for more than 3 years and had worked for many years in research on domestic abuse:
“It’s often difficult for people to believe that domestic abuse for people living with a terminal illness happens. I am often asked is it actually a thing?
It is our hope that the toolkit can support health and social care professionals and give them to the confidence to ask questions or know the signs to look out for.”
Michelle is a Principal Research Fellow at the School of Health Sciences at the University of Southampton, and her work has been funded by the National Institute for Health and Care Research ARC Wessex*
Nicky was subjected to domestic abuse by her partner when she was undergoing treatment for Cancer. (WARNING: some details are upsetting)
Nicky from Kent says: “He’d been abusive before and threatened to shoot me in the face. When I was diagnosed the abuse changed, he cancelled the health insurance because I wanted a divorce.
He told friends he’d bought a gun, and he was going to shoot me when I opened the front door. My house became a prison, I was terrified to go out even for chemotherapy.
He financially abused me by clearing out bank accounts, leaving me to bring up two children on my own while I was getting cancer treatment. We were living on food banks and money from my family.
He would send funeral plans to my house. I even got a call from a funeral parlour to arrange my own funeral.
I think abuse like this is rife. It’s like this taboo – it’s whispered about but never spoken out loud, There’s the two things, cancer and domestic abuse. That’s why I talk about it, and I want nurses and people like that to not be afraid to ask if they think someone’s being abused.”
Following piloting and evaluation the DALLI Toolkit has been adopted in a small number of hospice and palliative care settings in Wessex, and Marie Curie will implement it in their Hospices across the UK and signpost it on their popular Palliative Care Knowledge Zone as a resource for healthcare professionals. The DALLI Toolkit is also being used by domestic abuse services in local authorities and as an educational resource for social workers at a local university.
Jason Davidson, Head of Safeguarding at Marie Curie, says: “This evidence-based resource, tailored specifically to staff like ours who work in end-of-life care is essential.
It is packed with useful, accessible information. Regardless of your job role and the circumstances of the person/s you are supporting, there will be something in this toolkit that will help you and ultimately help protect the person you are caring for from domestic abuse.”
Binny Pomeroy is a nurse leader at Salisbury Hospice:
“It’s not something people like to think about. But it does happen in palliative care even though people think it doesn’t and it could be happening to a number of patients we might be supporting.”
Karen Drake, clinical director from St Michael’s Hospice (North Hampshire), a charity based in Basingstoke says: “Trying to build the rapport and the safety for someone to share something like that, when they obviously haven’t done it before, that can make it really difficult for healthcare professionals. That’s where the DALLI toolkit can help professionals to have the confidence to start a conversation”
For details of the DALLI project and for a copy of the toolkit see our website page
Notes to editors:
We are being careful not to identify Nicky in too much detail for her own protection.
For further information or to arrange an interview contact: Jamie Stevenson by email: Jamie.stevenson@soton.ac.uk or mobile 07920005828
*National Institute for Health and Care Research Applied Research Collaboration Wessex.
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
Funding high quality, timely research that benefits the NHS, public health and social care;
Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
Funding applied global health research and training to meet the needs of the poorest people in low and middle income countries.
NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK international development funding from the UK government.
1 The Marie Curie Research Impact Fund provides support for well-planned, high-quality, targeted activities that will facilitate the uptake of existing palliative and end of life care research into practice or policy to benefit people affected by dying, death, and bereavement.
The fund will be open to applications from 30 August to 3 November 2024, with decisions expected by January 2025. A total of £100,000 is available for this round of the Impact Fund. Applicants can apply for grants of up to £10,000 through the scheme. To discuss the scheme and any planned applications with a member of the Marie Curie Research Management Team, please email research.grants@mariecurie.org.uk.
About Marie Curie
Marie Curie is the UK's leading end of life charity. The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.
Marie Curie is the UK's largest charitable funder of palliative care research. Our work deepens our understanding of what makes a good end of life, highlighting challenges and gaps in care, and improving support for everyone with an illness they're likely to die from, and those close to them. Our research helps us give the best care and improve the care system so that more people have the best possible experience at the end of life.
Marie Curie campaigns for a world where everyone gets the best experience possible at the end of their life. We raise public awareness and influence decision-makers across the UK on the issues affecting dying people and those close to them, so more people can access high quality care and support when and where they need it most.
If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.
Whatever the illness, wherever you are, Marie Curie is with you to the end.
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