The All-Party Parliamentary Group on Hospice and Palliative Care is undertaking an inquiry into improving access to hospice and palliative care. tide will be submitting written evidence to this inquiry, and welcomes your expertise on the subject to help inform this response. Additionally, over the coming year tide will be focusing on the theme of improving end of life care and post bereavement support and so we would like to hear about your experiences and what you think could be improved.
From our series of themed workshops on End of Life Care held last autumn, which included both people living with dementia and their carers, we know that many carers and people living with dementia have very poor access to high quality palliative, end of life care and in particular post bereavement support. Many carers felt that their views and the views of the person they were caring for were not being listened to by many professionals.
“I’m four years into Alzheimer’s. I’ve learnt so much [at the workshop), each speaker was contributing something different. I thought about the end of life. How do I know how to go about this end of life care? A nursing professional told me to try and avoid being hospitalised.” John – Person with Dementia
“My wife is worried about losing me and I’m worried about losing her. I won’t know what to do without her as I’m so used to caring. Once you go, I’ll need help and support to get me back into the community” John – Carer of a person with dementia.
Both nurses and doctors, who attended the workshop, admitted that they find it difficult to talk about end of life care.
“What has struck me is that we’ve made progress in post diagnostic support but when people progress we find it difficult to talk about the progression of the disease, let alone End of Life. We want to freeze people in that post-diagnostic early stage. Avoiding the difficult conversations is counterproductive and not person-centred”. Gillian Lead Dementia Nurse