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Who cares in the South Hams?

In the latest of a series of blogs to mark Dying Matters Week, Jo Shill, Quality Assurance Lead for Northern, Eastern and Western (NEW) Devon CCG, highlights an innovative local project that is changing the way end of life care services are delivered.

Who cares in the South Hams? Without a doubt, many do. It’s clear that people care for and care about the people who live and die in Kingsbridge and its surrounding area. We (the CCG) and St Luke’s (our local hospice), have evidenced this well over the past year, with our work on improving end of life services, which recently culminated in a showcase event that brought together members of the local community, including those in caring roles, the cared for, people providing care opportunities, and those involved in volunteering, in order to support carers and identify Compassionate Communities moving forwards.

Our work has focussed on trialling the use of personal health budgets for patients accessing end of life services, who are funded via the NHS Continuing Healthcare Fast-track pathway. Our aim has been to increase the flexibility of care provision, so that people’s care needs can be met in a personalised and individual way. We focussed on supporting people from a rural area because we knew there was a gap in the market in terms of availability of traditional care providers.

Our project has seen a number of successes to date. We were able to streamline the administrative process to enable funding and care plan agreements to be made within 24-48 hours, a huge improvement on the previous timeframe of up to 12 days. Most importantly, we’ve been able to support 100 per cent of the individuals involved in the project to die at home, which was their preferred place of care.

We assisted 80 per cent of people we worked with to stay out of hospital during their final days, something we’re hugely proud of when you consider the 2015 data that shows 67% of the total deaths in England had at least one emergency admission in the last 90 days of life.

As a result of putting in place personal health budgets, we’ve also reduced the costs of care packages by around 50 per cent comparative to the cost of a commissioned service. This might have been a small group of 11 people, but the impact and the lasting memories of those left behind leaves a powerful message. Here are some messages from some of the people we supported:

I was prompted to write this email to say thank you… Having a personal health budget and personal assistants enabled my father to be discharged from the community hospital to die at home where he wanted to be with his family and friends. He was not there for long but he was on such good form because he was so pleased to be back at home… Having a personal health budget enabled us the choice in who we wanted to provide care. The ability to have a friend to care for my husband enabled my husband to die at home but also what was really nice is that I was able to formalise the care she was giving which made us feel better…

What next for us? We are committed to formally developing a compassionate community network within our local area, to develop, maintain and update an electronic register of personal assistants who are competent and confident in the delivery of end of life care, and to explore the use of a coordination role to bring the services together. Together with St Luke’s and other local services, we are ensuring that each person’s care plan is bespoke to them. By offering personal health budgets as a way for people to have care in their final weeks and months of life, ensures a more personalised experience of care.

Giving people a say in the care they receive, and helping to ensure it meets their individual needs and preferences will enable the words of Nye Bevan to hold true…he once said, ‘the purpose of power is to give it away’ – personal health budgets and Compassionate Communities will ensure this transfer of power will happen. The people have spoken.

Jo Shill

Jo Shill is a Quality Assurance Lead Nurse within NEW Devon CCG. Her current role focusses on the redesign and implementation of sustainable change in relation to the application of the NHS Continuing Healthcare Framework locally, and in the quality assurance of local care home and personal care providers delivering care to eligible individuals within the CCG footprint.

Jo’s previous roles have included acute service pathway developments and redesign of community rapid response services. Working jointly with local partner organisations, Jo has a passion for delivery of equitable services, and thrives on the challenge of asking ‘why wouldn’t we’ when it comes to embracing and implementing change.

The project described in this blog was delivered jointly by Jo, her colleague Chris Morley, the CCG’s Market Development Manager, and Gail Wilson, Deputy Director of Clinical Services at St Luke’s Hospice. Supported by the wider Personal Health Budget Team at NHS England and the St Luke’s Clinical Nurse Specialists, the project explored the particular challenges of delivery of end of life care in rural areas.

The personalisation agenda is embraced in full within the CCG, who now have well-established processes for set up and evaluation of individualised support plans. Working closely with their counterpart local authorities, NEW Devon have embraced the opportunity of delivery of care in this way, and relish in asking people ‘what matters to you?’ rather than, ‘what’s the matter with you?’

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