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I am busy preparing for my workshop on 8th October at
the Delivering Personalisation through Person-centred Practices
event in Manchester. It is good to take stock of where we are, and
what we are working on, and I want to share in this blog an
overview of where we are up to.
In my last blog I talked about Stephen's story. At the event, we
will be sharing the graphic of this, and what we have learned as a
team. Coming from this is our determination to further develop the
professional's companion guide to "Living Well.' This describes and
demonstrates how person-centred practices can help deliver the
Preferred Priorities for Care, and Gold Standard Framework and the
Liverpool Care Pathway. As well as reflecting on what we have
learned with Stephen, we are bringing together a group of
professionals who have used person-centred practices to think about
what has worked and not worked from their perspectives. We are
hoping that our GP colleagues will be part of this. Dr Haxby, a GP
that we work closely with, is developing an information pack for
other GPs, to share the important role of social care, and
person-centred practices at end of life. We are supporting this,
and providing examples and stories for it.
Alongside the professional's guide, and information for GPs,
carers have clearly told us that they want their own version of
'Living Well'. It is so easy for carer's needs and issues to become
lost in the focus on the person with a life limiting illness. Both
in preparing for the end of their loved ones life, and after death,
person-centred thinking tools can be very helpful. We are working
with carers to co-produce their own guide, beginning with a design
team of carers to start thinking about this.
Last week I saw the SCIE (Social Care Institute for Excellence)
DVD about personalization at end of life. Although it is always
embarrassing to see yourself on film, I think the messages that it
gives are powerful, and hope to share some of it with those of you
who come to the workshop
Last month a group of us met to reflect on what we had learned
from supporting Stephen at the end of his life. Stephen had been in
residential care since he was seven years old, had a learning
disability and died this year from cancer.
We used 'Living well and planning for the end of your life' with
Stephen and across the wide range of services, across health and
social care, and with his brother David, as together we supported
Stephen at the end of his life. David says that Stephen 'had
a good death'.
Last month we had a day of reflective learning to look at how we
had supported Stephen, and what we had learned, so that we could
work in even better partnership in the future. The day was designed
and facilitated with my colleagues Laura and Linda, and we were
We worked together and mapped a time line of Stephens's journey
from his diagnosis of cancer, through to the end of life planning
and his eventual death. We looked at the key decisions that were
made by professionals and staff along the timeline. Then we looked
at each key decision and used the person-centred thinking tool
'what worked and did not work from different perspectives'.
We looked at where the person-centred thinking tools had been
completed and used, and how this had worked with different
professionals and people involved.
Stephen had gone into the hospice with a full person-centred
description, describing what was important to him and exactly how
he wanted to be supported. We soon learned that this had not been
used until the latter stages of his life. We learned that this was
because the doctor had filed it away with the case notes. When the
hospice staff later found it, they described it as a 'eureka
moment' and it completely changed their approach to Stephen, and
how he was cared for and supported. We also learned that the
person-centred information that we had about Stephen, made it easy
to populate the 'Preferred Priorities for Care', without having to
get additional information.
On the 30th July, we are coming back together again
to take what we have learned into a shared action plan that will
improve how we support people at the end of their life, through
using person-centred thinking tools and 'Living Well' and
coordinating how we work together in a person-centred way.
We (with his brothers permission) are writing Stephen's story
and will have the graphic journey that I have described here,
available to share with other people. Stephen will be remembered in
many ways by the people who loved and cared for him. For me, he
will also be remembered as someone who helped us learn how to keep
improving and become increasingly person-centred in how we support
people at the end of their life.
This month, I have been travelling around the region sharing our
experiences in using person-centred thinking in end of life with
colleagues in health, social care and hospice.
In North Lincs I met with commissioners, social workers and
voluntary organisations who were particularly interested in knowing
where to start with person centred thinking:- How to get key
decision makers on board and how to share information across
It was wonderful to go to another region and see the same
passion, enthusiasm and desire for change. In the 'hot seat'
I was able to share the Hull Story of how as a leadership team we
all engaged with transforming teams and focused our attention on
what success would look like, shared our one page profiles and
supported person centred thinking champions.
Also in North Lincs I was invited to the hospice to talk about
'Living Well, Thinking and Planning for the End of your Life'.
This was an opportunity to share person centred thinking tools
as the hospice is about to review its documentation relating to
gathering personal information.
I was able to share Madge and Stephen's stories and talk about
using tools such as a 'good day/bad day', 'If I could I would', and
'my decision making agreement' these tools really helped people
supporting Stephen to understand what was important to him and how
best to support him to have more good days and for him to be
involved in the decisions about his life that he needed and wanted
to be involved in.
The medical director is very keen for the hospice to use 'Living
Well, Thinking and Planning for the End of your Life' and is
supporting staff to undertake person centred thinking training and
to use the tools to frame conversations with people who attend the
hospice and their carers/families.
In Leeds I have met with Emily and Kieran from Real Life Media
Emily and Kieran are producing 4 films for SCIE TV about
personalisation in end of life care and I met with them to discuss
the opportunity of filming the work we are doing in Hull supporting
people to continue living the life they want and how we are using
person centred tools to ensure their wishes are taken into
consideration by other organisations who are involved in planning
their care and support. More on how this develops next
In Wakefield I attended the regional ADASS End of Life Care
Social Care Group again to share with regional social care
colleagues how we are using 'Living Well, Thinking and Planning for
the End of your Life' across provider organisations so that whether
at home, hospice or in hospital people who support are aware of the
tools and implement what best support looks like for each
individual. This has helped us develop a common language
across organisations that even the person using services can
understand and join in our conversations.
We have been successful in showing that Living Well, Thinking
and Planning for the End of your Life' can enhance Preferred
Priorities Of Care and provide much richer information about what
people want to happen at the end of their life.
At this meeting Hull was awarded funding from the National End
of Life Care Team to promote the awareness of the role of social
care staff in end of live care and to write 3 stories that
demonstrate person centred practice in end of life care. I
will share these as they are developed.
This success has been achieved by shared learning, organisations
training together in Person Centred thinking and strong leadership
to overcome organisational boundaries/barriers.
This month I met with two GP Macmillan facilitators to think
together about information for GPs on person-centred practices at
end of life.
They told me that the training that GPs receive still tends to
focus on a more medical model - looking at symptom management, the
Gold Standards Framework and Preferred Priorities of Care. We are
going to work together and set up a meeting with a larger group of
GPs, to share what is happening locally in Hull around
person-centred practices and how we are using 'Living Well' to help
people think about, and plan for the end of their life. We are
planning to work with a group of GPs and identify ten people in
their care who are at the end of their life, and will work with
each of these ten people using 'Living Well'. We are also
developing three detailed 'case studies' that can be used as part
of GP education in the future. These case studies involve someone
who has dementia, someone who has learning disabilities, and
someone with a physical impairment. Each person is using 'Living
Well' and this will inform his or her Preferred Priorities of
As well as working with the group of GPs, we are also
contributing to GP lunchtime education sessions, sharing how
'Living Well' can inform Preferred Priorities of Care.
We are establishing some measures to track the difference that
this work is making. We are identifying the number of people who
have a Preferred Priority of Care, and how many people from this
group have completed a 'Living Well' that has informed their
Preferred Priority of Care (PPoC). The feedback that we are getting
from Hospices is that where people have completed 'Living Well',
their PPoC is much more detailed. We are also tracking how many
people die in the place they choose through their PPoC. In Hull,
too many people die in hospital, and we want to see more people
dying where they choose, and this is usually at home or at a
I think that this work is a great example of how social and
health care can work together - sharing skills and information for
people to die in the way that they choose.
I am Assistant Head of Adult Social Care for Hull City Council.
One of my lead areas is End of Life Care, specifically to implement
'supporting people to live and die well' that is the framework for
social care at the end of life, developed by the National End of
Life Care Programme.
involved in further developing 'Living
Well' and developing the training for rolling this out. Last
year we were delighted to be nominated for a Health Service Journal
award, for our work with Living Well, in the 'patient centred care'
This year we are focussing on the large-scale implementation of
Living Well across health and social care in Hull. We also want to
measure how successful we are in enabling people to live and die
well, by working with and following the experiences of 30 people
who are at the end of their life. We are supporting them to use
Living Well so that they have more choice and control over their
support and plan for the end of their life. A significant number of
people still die in hospital in Hull, and we want to use Living
Well to change this and enable more people to choose where they die
and for this to be honoured. We are also working with the personal
budget pilot in Hull.
Over the next months I will be sharing with you how we are
developing a 'Carers' version of Living Well. We have a carers
group who have specifically asked for this and will be co-producing
this with us. We are working with health colleagues to educate
people about how important person-centred thinking is at end of
life, starting with an education programme for GP's. I will share
more about this in my blog next month. We have already drafted a
professional's guide to go alongside Living Well that shows how you
can use Living Well alongside the Gold Standard framework and
Preferred Priorities for Care. We are going to be working with
professionals to test and finalise this. In the summer we will be
starting work on 'Progress for Providers' (or Professionals?)a
self-assessment for professionals and providers to check their
progress in delivering personalised, person-centred support for
people at the end of their life.