Portstewart woman's input helps Northern Health Trust develop 'toolkit' for people with advanced cancer

Inspired by patient feedback, and designed alongside local service users, its focus is on living well and supporting the best quality of life – and Helen McGarvey was one of the service users whose input steered the project.

The Portstewart woman said: “It’s really important that patients’ views are considered. Patients see things that staff don’t see.

"We understand how we like to be spoken to and we are the experts of our own condition. So if we can contribute to resources like this it makes it a really rich resource for other people to use.”

The series of videos are all led by healthcare professionals who provide a wide range of practical guidance and advice so people feel better equipped and have greater confidence around managing their wellbeing.

Alison Craig, the Northern Trust’s Macmillan Palliative Care Service Improvement Facilitator, said: “The idea for the toolkit came from one of our patients who told us that she could not find resources that really met her needs when she was diagnosed with advanced cancer. We met with her and others in this situation and they helped us create this resource.

“While a palliative diagnosis isn’t curable, people can live with their condition for years and continue to receive treatment. It’s important we support them so that they can live as well as possible, for as long as possible.

“With this in mind, the toolkit features a range of specialists from both the oncology and palliative care worlds, including dietitians, psychologists and physiotherapists, and other organisations including Macmillan Cancer Support and Cancer Focus. There are sections with information on local services and other organisations that can support people living in our trust.

“It touches on all aspects of wellbeing, including physical, social, psychological, emotional and spiritual. We want people to approach it like a library, choosing the elements which best serve their needs at any given time.

“The videos and resources are all easily accessible on our website and we hope they’ll also be useful for family members and friends as well.

“We’ve been really encouraged by how the new resource has been received so far, and the Palliative Care Service Improvement team is committed to working with service users to develop it further as we know there are lots more topics of interest that we could cover. We’ve included a feedback form within the toolkit so as people use it they can also suggest further topics that we could include."

Some of the videos available in the toolkit, and the professionals involved, include eating well to keep well – specialist palliative care dietitian; coping with serious illness – clinical psychologist, cancer services; physical activity and advanced cancer – specialist palliative care physiotherapist; information and advice on financial support – Macmillan benefits advisor; spirituality – Macmillan chaplain; body image and sexuality – Cancer Focus counsellor.

To browse the toolkit go to www.northerntrust.hscni.net