Hull City Council

I am busy preparing for my workshop on 8^th 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 joined by:

• Stephen's key worker and her manager
• Hospice staff - the doctor and nurse specialist palliative care community nurse
• Community learning disability nurse
• Social worker
• Continuing health care assessor
• Senior managers for LA, Hospice and NHS

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 30^th 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 organisations.

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 Productions.

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 month.

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 Care.

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 Hospice.

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.

I was 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' section.

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.