The distress and uncertainty of caring for a loved one at end of life can be overwhelming, and coupled with a feeling of ‘not knowing what to do’ can even leave caregivers struggling with feelings of guilt in bereavement. A Hospice in the South East of England has developed a solution: The Informed Guide.
The Informed Guide is a free suite of digital and printed materials which provide practical advice and information to empower people to care for their loved ones at the end of life.
Nick Farthing, Chief Executive at Hospice in the Weald, shares his experience and perspective of developing the Informed Guide:
“Whilst it may seem an obvious solution to an age-old problem, when we came to develop the Informed Guide we were surprised that nobody has done it before. We put in the needed time and effort to collect the views and experiences of staff, patient, and family caregivers. We focused on developing a guide that was clear and simple for family caregivers to use.
We worked with nurses, doctors and other staff across our organisation to develop the Informed Guide. We pooled the experience and empathy of staff who have worked in Hospice Palliative care for decades. These staff members have seen families in need of crucial, practical information to support their dying loved one. As well as drawing on experience from our staff and volunteers, we ran ongoing consultation groups with family caregivers and patients themselves. The voices and wishes of patients and families are at the very core of the Informed Guide.
The Informed Guide provides practical information on how best to meet the person’s needs, for example with basic mouth care, how to move them, and so on. We describe it as ‘pick up and put down’ because the materials don’t have to be used in a consecutive manner. It is not meant to be a training course, as we recognize that everyone learns in different ways, and that patients will have different needs.
The Informed Guide was first developed for family caregivers at our Cottage Hospice. The Cottage Hospice is a home from home where patients can continue to be cared for by their loved ones, with the support and advice of Hospice staff and volunteers available, along with the Informed Guide However, we’ve found that the Informed Guide has been useful for those with little to no experience on how to care for a dying patient or loved one. For example, new volunteers, relatives, and friends of dying patients have benefitted from using the Informed Guide in hospices, in their homes and in other care settings.
The Informed Guide is free and available to anyone caring for someone at the end of life. It is accessible at https://theinformedguide.org.uk/
Please share it amongst your colleagues and those you care for.”
Hospice in the Weald is a Hospice which cares for people across Kent & Sussex in South East England. They have recently developed the UK’s first Cottage Hospice – see – https://ehospice.com/uk_posts/cottage-hospice-a-model-of-care-for-the-future/ which is a purpose-built space where patients continue to be cared for by their loved ones, with the support of fully trained Hospice staff and volunteers on hand, 24/7.