Many of us don't like to talk about it, but it comes to us all – the period at the end of our lives, when we reach our final weeks, days, and hours.
Getting end of life care right is hugely important – both for the patient, and their loved ones. At such a sad and stressful time it matters more than ever that support is timely, effective, and caring.
The local NHS is looking at how it delivers end of life care – for people of all ages, living with all conditions and illnesses, at every stage – from diagnosis all the way through to palliative care, and bereavement support. The aim is to learn from people's experiences to help improve services and support in the future.
Hearing from people with personal, direct experience is essential – whether it is patients, carers, those who have been bereaved, and staff – to give the NHS a real insight into what works well, and what could be improved.
All aspects of end of life care are being looked at, including care from staff in GP surgeries, community teams, hospital staff, and hospices, across the whole Portsmouth, Fareham and Gosport, and South Eastern Hampshire area.
Early discussions with patients and carers suggest that there are some areas of real strength, and some areas where people feel they have not received the care and support they needed – such as communication, access to information, or the way that different teams work together.
The ambition of the local NHS is to work with local people to develop services which give consistently excellent care, which involve patients and carers, and which are designed around the needs of patients, not organisations.
Dr Elizabeth Fellows, clinical chair of NHS Portsmouth Clinical Commissioning Group and involved in work on end of life care across the Portsmouth and south east Hampshire area, said: "It might sound like a contradiction in terms, but a 'good death' is so very important. If a person can be supported towards the end of their life in the right way, it can bring real comfort to them and their loved ones. But if the care isn't good enough, quick enough, or compassionate enough, it can cause real upset and even trauma.
"We aren't just thinking about the final few days of a person's life. We want to look at how the NHS and its partners can help people right from the initial diagnosis, and then at every stage after that. It involves not just hospices and community teams, but hospital staff and GP surgery teams as well – so many of us play a role, we need to see where we can improve, and perhaps where we need to work together more effectively.”
A few early discussions with small groups of patients and carers have already taken place, and now a survey is available to capture feedback from a wider group. After that the intention is to set up workshop sessions to allow patients, carers, and healthcare professionals to come together to talk about what improvements are needed in more detail, and how to secure those improvements. The ambition is to involve people throughout the process.
If you have experience of end of life care, either as a patient or carer, your insight and knowledge can help to inform discussions and decisions.
Firstly, the NHS would welcome hearing about your experiences via a survey – just click here to answer a few questions.