At the end of someone’s life there is only one chance to get the experience of care right. Knowing this is why I work with Hospice UK and Dying Matters via the PiP.
The PiP forum are a strategic group who work with Hospice UK to share experiences of palliative and end of life care. All members are integral to the programmes of work within the organisation to improve the experience of care for others facing the end of life. Our members have varied interests across the spectrum of palliative and end of life care, focusing on grief, bereavement, the loss of a child, dementia/neurological diseases, transition of children and young people into adult services, as well as the care of older people and frailty at the end of life.
All of the members of the PiP either have life-limiting conditions or have personal experience of end of life care. As well as being involved in many projects via Hospice UK, they work on their own projects to improve experiences of care. You can find out more about our members here.
It is important to note that although the PiP works with Hospice UK, we focus on all aspects of palliative and end of life care, in the community, primary care, acute hospitals, people who want to die in their own homes and care homes, as well as care delivered in hospices.
We know that often the experience of care at the end of a person’s life is looked at from an organisational perspective. However, we know that from the perspective of the person experiencing the care, they do not see or recognise organisational boundaries. One of the challenges that the PiP is discussing is the ability of healthcare systems to collate, respond and act on experiences of patients, carers and staff across the end of life journey.
This will ensure that as we move towards more integrated care across healthcare systems, we can make future improvements based on what is important to people experiencing and delivering care.
Currently, the PiP is working:
- With the All Party Parliamentary Group (APPG) on Hospice and Palliative Care collecting experiences of care
- As part of the joint NHS Improvement and Hospice UK programme of end of life work in hospitals
- As part of the joint Hospice UK and Macmillan Building on the Best programme of end of life work in hospitals
- Developing approaches to new models of care via community involvement initiatives
- Developing our wider PiP network so that we can hear the voices of others who want to share their experiences of care to promote improvement
During Experience of Care Week please give a thought to the experience of care at the end of life, and realise that care runs across so many different organisations, departments and members of staff.
There are no second chances to getting things right for a person approaching the end of life. The experience must be person-centred, compassionate, and meet the needs, values and preferences of the person who is dying, and their family.
End of life care is everyone’s business. It does not just sit with the palliative care team, so do have a look at the PiP, and if you have an experience you want to share or want more information about the group and its work please do get in touch.
Experience of Care Week runs until Friday April 27.