First Pan-London end of life Alliance launched

Today (22 November) sees the launch of the first ever Pan-London Alliance to tackle inequalities in end of life care across London.

The End of Life Care Pan-London Alliance is the first time that key partners from clinical commissioning groups, local authorities, NHS and independent providers, the voluntary sector; and patient and carers groups have come together to support and promote patient-centred, coordinated care commissioning and delivery across London. The Alliance hopes this will translate into a better end of life care experience for individuals, carers and their families.

Despite pockets of good practice and the hard work of health professionals and others, too many people across London are not getting the care and support they need or want at the end of life. This new initiative will seek to provide a powerful impetus for change, delivering better quality care and experiences for those who need it.

The End of Life Care Pan-London Alliance is an inclusive membership group and is supported by an Executive Steering Group who will provide oversight and prioritise activities.  The founding members are ADASS (London) Directors of Adult Social Services, Marie Curie and NHS England (London).

Meeting people's preferences for place of care and place of death is an important measure of the quality of care they receive at the end of life.  All adults nearing the end of life, regardless of diagnosis or circumstance, should have access to high quality care and be supported in their choices and preferences.  Research from the Office of National Statistics shows that 88% of dying people who express a preference say that they want to die at home or in a care home, however latest figures in Public Health England’s ‘What We Know Now’ report show that only 44% of people die in their usual place of residence.¹ The majority of people continue to die in hospital, mainly because of a lack of palliative care in community settings.

Many health and social care challenges exist in supporting people’s wishes to be cared for and die in their preferred place of residence, and this is particularly evident across London:

• The number of people dying in hospital is 5% higher than the national average
• London also has the highest average length of hospital stay for people with a terminal illness  compared to other regions in England ²
• The 2011 national VOICES survey of bereaved relatives rated overall quality of care across all services lower in London than in any other part of the country³

The Pan-London Alliance will include wide representation from:

• Clinical Commissioning Groups
• Local Authorities
• NHS providers
• Academic Health Science Networks (AHSNs)
• Local Training Educational Boards (LTEBs)
• The Voluntary Sector
• Individuals who can speak on behalf of families and others who have experience of the impact of services

Dr Jane Collins, Marie Curie Chief Executive, said: “Whilst there are pockets of good practice, many Londoners are still not receiving the care they need or want. The End of Life Care Pan-London Alliance has the potential to be a real game changer and transform end of life care across London.  As a leading end of life care charity and founding member of the Alliance we are committed to ensuring that the right care and support is delivered to the right people, at the right time, in the right place.”

John Powell, End of Life London ADASS Lead and Director of Adult Social Services Redbridge, said: “An important role of the Alliance is to influence commissioners and providers of care to improve the experience of Londoners as they approach end of life.  Working together I believe the Alliance can facilitate changes that empower individuals to have choice and control over their end of life plans.  For many this relates to where they wish to die and there is real strength within the Alliance that can influence service delivery to help make this happen and so I am delighted that London ADASS and leaders within Social Care are fully engaged in this exciting London region development.”

Dr Andy Mitchell, Medical Director for NHS England (London), said: “Londoners deserve quality healthcare that is right for them – from the start of life, through to the end. It’s simply not right that seven out of 10 people would prefer to die at home, but in reality only around three in 10 patients in London do – the lowest proportion nationally.

“There are some fantastic examples of excellent end of life care across our capital, but we want to make these the norm. This pioneering new Alliance will enable the NHS and health partners to develop services that truly respond to what patients and their families want during the most difficult of times.”

Dr Catherine Millington-Sanders, Co-Clinical Director for the London End of Life Clinical Network and Richmond CCG Board member, said: “When someone is ill and dying, they or their carer should not have to think about how to get the best care for them in the last few months and weeks of their lives. We want to ensure that at this most difficult time for patients and their families, we give them seamless, high-quality care so they can concentrate on the precious time they have left together. It is crucial that as health and social care leaders we listen to what patients and carers want.”

Dr Catherine (Katie) Urch, Co-Clinical Director for the London End of Life Clinical Network and Lead Consultant Palliative Medicine ICHT, added: “Our aim is to support and enable London to deliver a high quality and seamless service during a patient's dying phase. It is vital that palliative care teams and primary care professionals work together to provide the best possible experience for patients and their carers. The Alliance also gives us the opportunity to work with other key partners to improve London’s end of life care for all.”

Brian Andrews, a bereaved carer from Beckenham and member of Marie Curie’s Expert Voices group, said: “Nothing prepares you for caring for someone you love at the end of their life. Different agencies, keen to help, must understand that 'we don't know what we don't know' and that this can lead to unintentional miscommunication, and in our case, distress."

For more information on the End of Life Care Pan-London Alliance or to get involved, email Meeta.Kathoria@mariecurie.org.uk or telephone us on 020 7599 7277.

-ENDS-

References

^{1 Office for National Statistics, National Bereavement Survey (VOICES), 2012.↩}

^{2 Source: Data: Hospital Episode Statistics (HES) from Public Health England (NEoLCIN). End of life care profiles summary statistics 2008 to 2010. Forthcoming 2013.↩}

^{3 Office for National Statistics, analysis of the National Bereavement Survey (VOICES), 2011.↩}