Many people would like to die at home, but their loved ones can be nervous about looking after them fearing their own lack of clinical knowledge. Family and local health system engagement told us there was a gap in the provision of non-clinical family education.
‘Last Days Matter’ is the idea of the North Lancashire Compassionate Communities Group, who after research decided to develop their own programme that would support people without clinical expertise to look after their loved ones at home. The Group used their lay and clinical experiences to develop a three-hour programme consisting of five sessions. Each session is made up of a short film that follows the experience of John who is dying, and discussion time. Each session addresses a need that engagement had revealed; planning for the future; to care and accompany; saying goodbye, recognising the signs of dying and the new normal.
We learnt that it was necessary to seek funding for professional actors and filming skills so that we could have a programme that would be professional and how important it was to seek the expertise of the patient and public for their feedback on all scripts and teaching materials.
The result is a programme that is now ready to be used in local communities and has attracted the interest of North West NHS England and NHS Improvement. The programme will be made available further afield for adoption or adaption. It will support people to care for their loved ones at home by giving them the knowledge, reassurance and some of the necessary skills. Initial feedback from engagement and contributors suggests that ‘Last Days Matter’ is much needed, will be sought after and will be valued by those who need it most. It will also support palliative care staff across the health community.
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