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Working together for people in the last year of life

A GP and Clinical Director at St Helena Hospice reflects on the new integrated end of life care being offered in North East Essex:

The North East Essex Health and Wellbeing Alliance End of Life Board was launched in February 2018 to take shared accountability for the quality of health and social care delivered across our community for people in the last year of life.

The Alliance is a group of health and social care organisations with representation from the third sector and includes the acute trust, community services, the mental health trust, county and district councils, the ambulance trust, primary care, a patient representatives group and St Helena hospice.

We merged our individual organisations’ end of life strategies to create a locality wide strategy committed to safe, high quality, equitable, patient centred health and social care that promotes choice and dignity for people at the end of life.

Our delivery plan focussed on seven priority areas; advance care planning, community asset development, best practice in primary care, crisis response, specialist palliative care, quality and training and outcome measures.

One year later there have been successes and celebrations, challenges and frustrations as we seek to overcome organisational boundaries and rivalries and work together for the benefit of our community.

We were fortunate to have an established electronic palliative care coordination system (EPaCCS) locally called My Care Choices, which we have developed into an integrated system within the primary care record. Over 9,000 people have used this register for their choices over the 5 years it has been in place, and there was cross organisational agreement to build on this foundation for a programme of advance care planning.

We expanded the concept of the register to allow people not thought to be in the last year of life to record their choices. The acute trust has created a key performance indicator for checking My Care Choices for people admitted to hospital, the mental health trust now offers advance care planning early after a dementia diagnosis. The ambulance trust has access to the register and our next wave of development will open access to care home staff and social care.

We committed resources to a public awareness campaign for My Care Choices, using bus and newspaper advertising, social media, a website, public events and engaging with patient participation groups. Now 0.7% of the local population has a record on the register of their priorities for future care.

The local GP company, owned by the majority of practices in the area, hosts a locally enhanced service for primary care recognising the work of proactive identification of people approaching the end of life. GP End of Life Champion posts have been created to lead high quality palliative care within the GP hubs.

There is a 24-hour single point of access with a rapid response nursing service for people in crisis at the end of life that receives almost 3,000 calls per month.

Palliative and end of life training across the locality is increasingly integrated, offering clinical staff the opportunity not only to develop their skills in end of life care but also to understand the pressures on clinicians in other organisations and to improve cross boundary communication.

Integrated better care funding has been used to deliver a GSF cross boundary programme involving over 35 care homes, domiciliary care agencies and the mental health trust wards for people living with dementia.

We are currently working with Professor Muir Gray’s team at Triple Value Health Care to develop the first atlas of value in end of life care to drive an integrated population-based commissioning model for the future.

There are challenges to overcome, but there is a developing shared sense of responsibility, and a commitment to work together for the benefit of the population we serve. One year in, the most important lesson has been the importance of building relationships and trust across organisational boundaries.

Time together has been time well spent.

Dr Karen Chumbley

Dr Karen Chumbley has been a GP in North East Essex for 17 years and the Clinical Director at St Helena Hospice for the last 4 years.

In 2018 she was appointed the Senior Responsible Officer for End of Life Care in North East Essex and is chair of the North East Essex Alliance End of Life Board.

Karen led Castle Gardens Practice in Colchester to be one of the first cohort of practices accredited with the Gold Standard Framework Going for Gold award. She was the Clinical Lead for End of Life care for North East Essex from 2013-2015 and as such led the CCG Primary Care End of Life programme promoting the identification of people approaching the end of life, advance care planning, care coordination and symptom control.

In 2019 Karen was awarded FRCGP for her work in end of life care within Primary Care.

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