Improving care

The experiences of patients, carers, and clinicians in the later stages of life - other observations

Our overall user research findings were supplemented by some additional observations.

Improving care needs families to be intact.

It might be that the family is chaotic and into that family has come a severe illness and you can’t suddenly mend families that have been broken, haven’t communicated or have been dysfunctional for years. It just adds to it. They are not all suddenly going to get on if they haven’t got on for 20 years. The care system assumes that families are all intact to take on care.

- Jo, palliative care nurse

Improving care means designing for loss.

I can’t recreate that feeling for someone who loved walking that they are up in the mountains again but I can understand that loss. I can’t give that back to someone but you have to recognise that is what they loved doing. It is recognising the element of what they miss and it is hard because it is painful. We are afraid of this because we can’t design for it, there is no solution, we have to be with someone in their loss without being able to make it okay.

- Jo, palliative care nurse

People think you are trying to understand a whole person to design activities for them but it is often what they have lost. Understanding what it is that they are constantly grieving for.

- Valerie, hospice centre manager

It’s really important to be able to understand what isn’t important to someone. For some people what they don’t want to happen is much more important than what they do want to happen.

- Valerie, hospice centre manager

Improving care means understanding the wider context

On a Friday I do a surgery 8.30 - 11.30 which would be 6 people an hour, so that is 18 people but then I would also be doing around 50 - 60 letters. That is all just in the morning. Then in the afternoon on a Friday I am on call. And in between I will have done about 10 people on home visits. So when I am call I also do about 25 - 30 in the afternoon. So I would expect to cover about 60 people on a Friday and also about 50 letters. And a lot of tests as well.

- Ruth, GP and chair of Clinical Commissioning Group

The problem that I have with clinics is that sometimes people walk in and are in the early stages of their illness and coming to see me is okay, and they could make the journey but there are other times when they come and they look so frail and so weak and exhausted from the journey that I think what are we doing bringing them in…why didn’t one of us go and see them at home? But it is reflective of the entire country and lack of resources.

- Alison, consultant in palliative medicine

A good day would be about identifying who needs most support and being able to support them that day…sometimes they need a social care package and that can now take a few days/weeks to set up…the carers aren’t’s really often down to people…the number of people, their availability.. so many services are run so tightly.

- Alison, consultant in palliative medicine

There is a crisis of care happening. You used to have to wait to work somewhere like St Christopher’s. Now they are 20% down. Young people aren’t training and coming into caring professions.