End of Life Care

Enabling health and social care systems to make change happen so that people live and die well.

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Social Finance and Macmillan Cancer Support invite you to a lunch and learn on Wednesday 25 May to hear more about the partnership work on social investment and progress to date. We will also do a live demonstration of the Community of Interest, seek your views on what you would like to see on the Community and get your feedback on the current content and format. To book please email endoflifecare@socialfinance.org.uk.

About us

We are an agile multidisciplinary team committed to improving end of life care. We combine our financial, clinical, operational and service design skills to develop, test and scale new approaches.

We enable health and social care systems to make change happen so that people live and die well.

We do that by: 

  • Analysing what works and providing sympathetic capital as a catalyst to invest in community-based models of care;

  • Developing outcomes-based contracts to ensure personalised end of life care, focused on the outcomes that really matter to people; and

  • Driving the use of applied analytics to inform decision makers and ensure agile service management.

If you would like to hear more about our work please email endoflifecare@socialfinance.org.uk

Coins
£3.2m

invested in six projects to date

Books
60

expressions of interest from around the UK

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11,100+

people supported by our services

Background

The End of Life Care Integrator was set up in 2016 following partnership work with organisations including the Department of Health and the NHS Confederation, with support from Professor Bee Wee CBE. Starting out in England, its aim was to test whether an outcomes-based approach to end of life care (EOLC) would improve people’s quality of life in the last 12 months of life and increase the number of people who ‘die well’ by aligning system incentives.

Through investment from the Care and Wellbeing Fund, which was supported by funding from Macmillan Cancer Support and Big Society Capital, and grant support from The Health Foundation together with funding from The National Lottery Community Fund, we have worked in partnership with systems to design, mobilise and deliver seven end of life care social impact bonds. These are the first of their kind and have provided a proof of concept for further investment. In 2021, we were delighted to launch a new Fund with investment from Macmillan Cancer Support.

 

Our projects

Hillingdon: Single Point of Access and Rapid Response Nursing

What is the unmet need?
People in Hillingdon are not able to die in their preferred places due to a lack of community based support.

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This new model of care has supported 2,200 patients in the community, of which 90% have been able to die in usual place of residence versus target of 65%.

North West London: Telemedicine into Care Homes

What is the unmet need?
Care home residents have been shown to spend more time in hospital in their last year of life compared to those who live in their own homes.

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Introducing telemedicine support for care home staff has led to a 28.3% reduction in emergency admissions from Care Homes.

Sutton: Palliative Care Coordination Hub

What is the unmet need?
Lack of coordination in care means people were spending longer in hospital than desired or needed.

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Establishing this Hub ensures that people and their carers are supported outside of hospital where possible. Early data suggests a reduction in unplanned bed days for Hub patients.

Somerset: The Talk About Project

What is the unmet need?
People in Somerset do not all have the same access to advance care planning.

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Specially trained volunteers set up an advance care plan with patients, and signpost on to GPs or other services when needed. Although impacted by Covid, 170 referrals were received in Sept 21.

Waltham Forest: System Transformation Programme & Care Coordination Service

What is the unmet need?
Limitations to community-based support meant that Waltham Forest residents were spending more time in and dying in hospital.

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Enhanced community provision and integrated decision-making and operational delivery resulted in a reduction in unplanned bed days versus comparable areas; approx. 500 fewer per quarter.

Somerset: The Talk About Project

What is the unmet need?
People in Somerset do not all have the same access to advance care planning.

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Specially trained volunteers set up an advance care plan with patients, and signpost on to GPs or other services when needed. Although impacted by Covid, 170 referrals were received in Sept 21.

Our people


Katy Saunders
Agent Director of End of Life Care team and Director at Social Finance

Katy Nex
End of Life Care Development Manager

Rosanna Hardwick
Digital Labs’ Health Analytics Manager

Sarah Churchill
Associate for the End of Life Care team

Caroline Hamilton
Analytical Lead

Phil Hall
Project Lead, End of Life Services

Rebecca Luff
Analyst for the Health and Social Care team

Karen Wen
Senior Analyst for the Health and Social Care team

Liam Thornton
Analyst for the Health and Social Care team

The EOLCI team at Social Finance has a wide range of backgrounds including NHS senior management, central government policy experience and clinical leadership. Social Finance has worked on a wide range of health-related projects, including designing and raising capital for new services, advising both commissioners and social enterprises, and helping to manage and evaluate the delivery of innovations.

The Integrator’s success is also shaped by some of the sector’s leading voices.

Nigel Hopkins
Chair of EOLCI Board, Experienced non-executive director
Adrienne Betteley
Strategic Advisor to the EOLCI. Strategic Advisor Macmillan Cancer Support and Co-Chair of National Ambitions Partnership
Dr Iain Lawrie
Strategic Advisor to the EOLCI. Consultant & Honorary Clinical Senior Lecturer in Palliative Medicine. President, The Association for Palliative Medicine of Great Britain & Ireland

 

Sam Cheverton
Strategic Advisor to the EOLCI. Director of Strategy and Impact Marie Curie UK
Dr Sarah Russell RGN
Non-Exec Director of the EOLCI. Co-chair Advisory Group, Lead Nurse Palliative Care, Portsmouth Hospitals University NHS Trust; Visiting Clinical Reader, University of Surrey; Florence Nightingale Foundation Scholar.
Dr Pauline Love
Strategic Advisor to the EOLCI. EOL Clinical Lead Derby & Derbyshire CCG. Dales Place Alliance GP. Macmillan GP Advisor. East Midlands Derbyshire LMC representative.

We also have a strategic partnership with NHSE/I, and have been asked to contribute to two national workstreams: Commissioning, Contracting and Finance and Digital Development for End of Life Care.

Specialists

The EOLCI is fortunate to benefit from the experience of independent consultant specialists who provide expertise:

Diane Laverty – Clinical
Diane has worked in palliative care for over 30 years and has experience in all organisational settings, including specialist cancer trust, acute trust, community and pre hospital care. As a nurse with many years of experience she is passionate about patients and carers having a voice and receiving high quality care across all settings and circumstances, from diagnosis to death and into bereavement. She is particularly interested in early palliative care, advance care planning, change management, service development, professionally developing junior staff and developing leadership within all sectors of the healthcare service.

Diana Howard – Clinical
Diana is an experienced palliative care nurse, and was originally drawn to the speciality as an opportunity to use her skills and interests as both a general and a mental health nurse. Much of her career was spent at Imperial College Healthcare NHS Trust in London, where she led and developed the hospital palliative care team. She has a particular interest in palliative care in critical care departments, and was vice-Chair of the Trust’s Clinical Ethics Committee. More recently she was Director of Nursing at Coordinate My Care, the Electronic Palliative Care Coordination System used across London, and has an interest in care planning and clinical safety in the development and implementation of healthcare digital systems.

Owen White – Contract and Finance
Owen is an experienced Chartered Accountant/Finance Director with 30 years post qualification experience in the NHS and Commercial Sectors, including multinational Telco and IT organisations. He has health experience from across a number of systems with roles on both provider commissioner side; including DoF, Deputy CFO and Contract Director; and with responsibilities covering acute, mental health and community sectors. He is a passionate believer in systems working better together and building relationships to facilitate greater co-operation supported by innovation and structure within contracts and commercial relationships.

What is end of life care?

Every year, around 550,000 people die in England, two thirds of them aged over 75.  Three quarters of these deaths follow a long-term illness requiring access to end of life care.

End of life care seeks to support individuals with advanced, progressive, incurable illness to live as well as possible until they die.

For many a ‘good death’ involves being without pain, in a familiar place with friends or family and being treated with dignity and compassion.  

Of the 79% of people who prefer to die at home, only half are able to do so.

The average cost of care in the community in the last three months of life is £1,000 per person who died, while in hospital it is £4,500 per person who died (source: The Nuffield Trust).

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Case studies

Waltham Forest, London

Patient profile: Mrs. B was a patient with end-stage lung cancer. She was known to district nursing, clinical nursing specialists, and EPIC teams. There was an integrated and co-ordinated approach to care planning and delivery. Mrs. B.’s two main carers were her two sons who were not sure how to cope with the personal care of their mother, or what to expect as she approached the end of her life. Mrs B. was adamant about caring for herself and wanted to retain her privacy and independence as long as possible.

EPIC support: The EPIC representative (nurse) met the family to talk about options for her to be able to remain at home, to retain her dignity and not feel embarrassed about her personal care needs. One of her sons struggled to cope and would regularly call the nurse upset and frustrated and needing to offload emotionally. When her physical condition deteriorated after a few weeks, the nurse discussed the EPIC HCAs providing personal care in the day and respite for the family overnight. By this point the nurse had built a relationship of trust with Mrs. B and her sons

Outcomes: A care package wasn’t needed as Mrs. B deteriorated rapidly and was able to die in her preferred place of death i.e. at home with her sons. Her sons both said they couldn’t have managed without EPIC and wrote to thank the EPIC team and praise  the service they’d received.

Haringey, London

Patient profile: Sally was a 95-year old lady with advanced dementia. Her family had already discussed advance care planning prior to her admission to the home. They agreed resuscitation was not appropriate given her age and frailty but wanted her to be transferred to hospital if she developed a reversible condition, e.g. chest infection. One of the senior carers noted Sally was not “her usual self”; she was less chatty and was not acknowledging staff; additionally, she was eating and drinking less than previously and would often fall asleep during meals. These concerns were raised with the GP.

Action: The GP assessed Sally and noted she had distended chest wall veins. He sought advice from the Community Matron who was visiting with the elderly care consultant later that week. The Community Matron and the consultant felt the distended veins could indicate a malignancy, so contacted Sally’s next of kin to discuss options. The Advance Care Planning Facilitator met with the family on their next visit to review Sally’s Advance Care Plan. The family agreed they would still like treatable or reversible conditions such as infection to be treated in the nursing home environment, but no longer wanted Sally to be admitted  to hospital. If oral treatment in the nursing home was ineffective, they would want Sally to be made comfortable and allowed to die naturally in the nursing home.

Learning: The senior carer did not know what was wrong with Sally but recognised a change and felt able to raise this with the GP. Her concerns were taken seriously, and Sally was reviewed by the wider Multi-disciplinary Team. Staff were able to see that ACP is a fluid process and preferences can be reviewed in response to changes in condition.

North West London (Telemedicine)

Patient profile: Mr L, aged 93, had recently been admitted to a care home. He had a diagnosis of multiple sclerosis (MS), was bed-bound, and used a long-term urethral catheter.

Action: The nurse in charge called to say that the catheter had ‘fallen out’ and that she was not qualified to insert a new catheter. The nurse requested an ambulance to take Mr L to A&E to have a new catheter inserted. Our assessment showed that Mr L was comfortable, clinically stable, not agitated, and had no signs of urinary retention.The care home had no information about when the catheter had been inserted, or whether it had been in hospital or in his previous home. The nurse was asked to monitor Mr L whilst Telemedicine tried to find a way to solve the problem that did not involve an A&E attendance, and to call back if there was any deterioration in his condition. Note that Mr L (as a care home resident) was not known to district nurses. The local Rapid Response Team was contacted, and an urgent referral made for re- catheterisation.They were able to do this promptly and successfully, without Mr L needing to leave his bed.

Learning: The Telemedicine service avoided conveyance to hospital, which would have caused distress to a patient who was bed-bound and needed hoisting, and increased Mr L’s confidence in the ability of his new care home to manage his needs.

Hillingdon, London

Patient profile: Mr B, an 84-year-old gentleman, suffered a recent aggressive relapse of Non-Hodgkin lymphoma. His wife was referred to the district nurses, the specialist palliative care team, and the Your Life Line service for support at Mr B’s end of life when his condition deteriorated rapidly. 

Action: The Your Life Line team visited Mr B at his residence, while the specialist palliative care team requested urgent anticipatory medications and a video consultation from a GP. A full assessment revealed that Mr B was nearing the end of his life, and the team provided Mr B and his wife reassurance, advice, and answers to their questions. Mr B expressed a clear preference to remain at home, so the team provided services, equipment, and medication to support. Mr B and his wife were advised that he could die at any point, and they informed the wife what to do if she needed any advice or service support if Mr B passed. Mr B died in the evening, and the Your Life Line team commended Mr B’s wife on her care given that enabled him to pass in his preferred place of death.  

Learning: With strong coordination and timely response from multiple teams, Mr B was able to die in his preferred place, surrounded by family.

Sutton, London

Patient profile: Mr M was an 86-year-old male patient with multiple comorbidities, including dementia. He suddenly deteriorated, no longer eating or drinking. He had not completed any advanced care planning and was referred late to the Sutton Palliative Care Coordination Hub.

Action: Although the Hub is not an urgent service, the team acted quickly to ring Mr M’s wife, and the Hub GP wrote PRN charts that confirmed Mr M was imminently dying. His Coordinate My Care (CMC) record was then completed, and prescriptions from the chemist were sent electronically. His GP visited him at home, and the team discussed with Mr M’s family what to do when he died, assessed Mr M and ensured all equipment was placed correctly, and advised Mr M’s wife to liaise with the chemist about drug delivery.  

Learning: Mr M died a good death, at home with his wife. Although it would have been beneficial to have more time to plan and talk with Mr M and his family, the timeframe did not allow for this. However, the team’s rapid response meant that Mr M died a dignified death at home with his family, in his preferred place. 

Our future

We are currently working to finalise our next wave of funding for projects and build our pipeline.

Areas of interest include racial injustice and rural poverty. We are also keen to develop ways to measure personalised care for people in the last 12 months of life.

We are working to build a community of interest in Social Impact Bonds for EOLC, sharing learning across sites and across networks, and working on new approaches to outcomes based commissioning in a time of Covid and changes to NHS contracts.

 

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