www.ncpc.org.uk www.dyingmatters.org From National Perspective to Community Initiatives Donall Henderson NI Regional Representative NCPC CEO Foyle Hospice [email protected]@FoyleHospice
Set up by the NCPC for all those involved in palliative care, to support the 2008 End of Life Care Strategy
We are a broad based, inclusive national Coalition, working in partnership, with over 30,000 members - across the NHS, voluntary and independent health sectors, social care, housing, faith and belief groups, community, pensioner, retirement organisations, schools, academia, legal, insurance, finance & funeral sectors
• “Support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm.”
Our Mission:
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The Dying Well Community Charter
• Commissioned by PHE • To review the “Good Death
Charter” • RCGP & RCN agreed to
support rather than revise their own charter
• Consultation & revision • Published alongside the
Public Health Approaches toolkit
• Brief to “roll it out” in 6 places www.dyingmatters.org
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Public Health England contacted NCPC in 2013 asking them to review, refresh and adapt the “What makes a good death? A North East Charter”, aka the “Good Death Charter”, published by the NHS North East Strategic Health Authority in 2011. Objective: to review and update the Charter so that it can be rolled out across the country, as part of a public health approach to improving end of life care for all. � The Royal College of General Practitioners (RCGP) and Royal College of Nursing (RCN) agreed to support NCPC in revising it� NCPC revised the Charter, taking into account the new ‘Five Priorities for Care’, from the Leadership Alliance for the Care of Dying People (LACDP)(the national coalition set up to respond to the recommendations outlined in the independent review of the Liverpool Care Pathway (LCP), called “More Care, Less Pathway”). The LACDP outlined the Five Priorities in its response “One Chance to Get it Right” (26th June 2014)�Revision was done in consultation with PHE, RCGP & RCN, health and social care staff, people with personal experience. Alongside the Charter, a ‘Public Health Approaches’ toolkit has been produced by Professor Allan Kellehear and Dr Aliki Karapliagkou at Middlesex University. The toolkit offers an outline of the origins, principles and methods of a theoretical and practical framework of public health end-of-life care. Brief to roll out in 6 localities: we advertised for expressions of interest, and received 23. To accommodate as many as possible, we extended to 8 localities, with 6 of them also supporting a ‘buddy’ community to implement the Charter.
NCPC & PHE named the 8 localities ‘Pathfinders’ – a deliberate use of language, as this form of public health approach to end of life care was something we had not done before. We also didn’t want to be prescriptive about how the Charter should be implemented.� Whilst NCPC is providing support to the localities, it is also an opportunity to learn from what local organisations (like yours!) are doing to implement a public health approach to end of life care, and build community resilience.�
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“Dying and death do not happen in isolation from the rest of life. People who are dying may not wish to be isolated and disconnected from their communities. There is more to do to engage communities in the end of life so that those affected by dying and death do not feel abandoned and socially isolated. Care for one another at times of crisis and loss is not simply a task for health and social care services but is everybody’s responsibility.”
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This paragraph from the Dying Well Community Charter itself encapsulates the key principle: dying and death are part of life, and people experience them within a social setting, not simply as individuals in isolation.
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As mentioned in the introductory slide, this toolkit was produced by Professor Allan Kellehear and Dr Aliki Karapliagkou at Middlesex University. The toolkit offers an outline of the origins, principles and methods of a theoretical and practical framework of public health end-of-life care. It is designed to provide Pathfinders practical advice on developing a public health approach to end of life care, to complement the principles in the Dying Well Community Charter.� Charter & toolkit were published together and designed to be used alongside each other
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This slide reflects a common problem NCPC & Dying Matters encounter when talking to people who have been bereaved. The example in the slide is from a real person, who lives in Lewisham.
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Whose dying is it?
• Western model of
individual autonomy?
• Relational autonomy?
• Community? www.dyingmatters.org
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The above image was published in LIFE Magazine in November 1990 showing AIDS patient David Kirby taking his last breaths surrounded by his family in Ohio. The image, shot by Therese Frare, became the face of the HIV/AIDS epidemic. The Dying Well Community Charter encourages communities to view care for one another during dying, death and bereavement, as everybody’s responsibility. This idea is encapsulated in this image.� The Western model of individual autonomy is inadequate as an approach to dying and death. Dying and death do not happen to individuals in isolation from the people to whom they relate – families, friends, neighbours, colleagues, fellow members of community groups.� Relational autonomy recognises that people make decisions in the context of these relationships, and will think about how they impact upon them.� The Dying Well Community Charter sees the community as responsible for caring for people during dying, death and bereavement.
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I didn’t know that
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DVD produced by Dying Matters with the Heart of England NHS Foundation Trust (November 2014)� aimed at improving understanding about Muslim traditions related to dying and death among doctors, nurses and other health and care professionals. It was developed with the Birmingham Central Mosque and the Birmingham Muslim Burial Committee. The DVD highlights the need to understand different cultural practices and requirements at the end of life, and around dying, death and bereavement. A locality which has developed community resilience will have higher levels of awareness of such needs.
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Images & language
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As part of developing communities that understand one another’s needs around dying, death and bereavement, it is important to use images and language that reflect the diversity of the community The end-point of conversations around end of life care will often be the same, whoever the conversation is with. However, the individual triggers for these conversations will be different, depending on the needs of the person being cared for.� These are images of leaflets that Dying Matters have produced, which attempt to reflect the diversity of the population in their images
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Bereavement
• 32% of those bereaved in last 5 years said they had not been treated with compassion
• 87%: Employers should have a compassionate employment policy inc bereavement leave
• 56% would consider leaving their job if they weren’t properly supported in bereavement
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A ComRes survey in 2013 showed 47% of people reported being bereaved in the previous five years. It affects almost half of people at any one time – yet support is still a problem - illustrated earlier by the quote “people crossed the street to avoid me” NCPC & PHE hope that the Dying Well Community Charter will be helpful for improving bereavement support These statistics demonstrate the desperate need for employers to be more supportive during times of bereavement – the Charter provides a good opportunity to involve local employers – businesses, charities, schools, etc.� NCPC & Dying Matters, with the National Bereavement Alliance, published the report shown in January 2014.� One of the key recommendations of the report is “Clarity about who is responsible locally for commissioning and providing bereavement support, with better coordination and information about services”� Better bereavement support at work was another key recommendation.
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Schools
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Some localities will want to work with schools in particular – encouraging conversation around dying and death in schools, and raising awareness of key issues� Dying Matters have produced some resources that could be used/adapted� Example of one project – run jointly by Haberdashers' Aske's Hatcham College (HAHC) and Greenwich and Bexley Cottage Hospice (GBCH), to bring art pupils and people in the hospice together. � Pupils and people using the hospice spent a month getting to know each other via weekly visits - discussing everything from love and friendship to illness and death. The pupils, in their own time, then create a piece of artwork which represents the person. This artwork is essentially commissioned by the person using the hospice, and is for them.
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Practical help
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Dying Matters also runs ‘Find Me Help’ – a useful resource that points people to local services that provide different forms of care and support, including: help with planning for the end of life help with understanding dying and death help with talking about dying, death and bereavement support during bereavement information for carers Services can also purchase ‘Find Me Help’ as a microsite for their own websites�
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Evaluation
• Five fields of activity o Awareness & Conversation around
Dying o Support in local groups/organisations o Practical support o Meeting care needs o Prioritisation of end of life care www.dyingmatters.org
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Within each of the five fields of activity, there are two criteria against which various people with insight into care and support in the locality, will ask: What exists already? Evidence (e.g. strategies) & examples/ case studies of where existing activity has worked well How could these existing areas be developed? Including examples of shortfalls What new initiatives or projects could be initiated? Using this information, they will rate each criterion as either Red, Amber, or Green, to identify one or two key areas of priority e.g. Of Criteria: Support in local groups/organisations Policies and activities to support people at the end of life and bereaved people in local organisations (e.g. schools, workplaces, other) Practical support at the end of life and activity in local groups (e.g. pensioners organisations, fellowship & faith groups, drama & creative arts, sports groups, trade unions, other) Meeting care needs Involvement of local community in designing care services Making end of life care services accessible and culturally appropriate for everyone in the community
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Upcoming Events
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Involving the Whole Community – Public Health and End of Life one day conference will be taking place in Birmingham on Wednesday 10th February 2016 This is the first national opportunity to hear about the work of the eight Pathfinder communities, from both lay members of those communities and representatives of organisations. It is an unmissable opportunity for commissioners, service providers and decision-makers to hear about state of the art activity in community development, find out what is currently happening, and to network and engage with the people who actively involved. This conference will... Inform you about community development initiatives in eight regions across England Share practical examples of how to set up and evaluate a public health approach Inform you about the impact to date in communities where the Dying Well Community Charter work is being implemented Include opportunities to hear from representatives of Pathfinder communities as well as the organisations leading them Inspire and engage participants to harness energy and build capacity in end of life care in their own communities NCPC delighted to announce that we will be holding our inaugural flagship annual two-day conference and awards on Wednesday 23rd & Thursday 24th March 2016 at Keele University in Staffordshire. will focus on the vision for improvement of end of life care, building on the ambitions report. It aims to help idfentify what needs to happen in practice to make this a reality. Speakers confirmed to date include Sir Keith Pearson, Chairman of Health Education England and Dame Julie Mellor DBE, Chair and Ombudsman, Parliamentary and Health Service Ombudsman. Provisional sessions include: Ambitions for improvement of end of life care Expert panel on personal budgets Current challenges and future priorities for the end of life care workforce Coordinated care of long-term conditions Improving pain control and symptom management in community settings Community involvement in end of life care Making end of life care everyone’s business
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National Choice Review
“We support public health approaches to end of life care, for example the Dying Well Community Charter, published by the National Council for Palliative Care and Public Health England, and the Compassionate Cities approach and advise that health and social care commissioners include initiatives to support and strengthen community resilience and involvement in end of life care in their plans”
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The Department of Health called for a Review into Choice at the End of Life, which was chaired by Claire Henry (Chief Executive of NCPC & Dying Matters) The report was published on 26th February, calling for a national choice offer to be in place by 2020 We’re looking to see how the Government responds to this � Useful potential tool to persuade commissioners and decision-makers to support/invest in the Charter initiative
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Dying Matters Awareness Week
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Monday 9th – Sunday15th May 2016
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It’s often helpful to provide a specific focus for activities in the awareness week. Here it’s encouraging people to actually take the actions described.� We have awareness packs, bundling some of our most popular resources.� These will be available today at the launch event
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Our hopes
• “Pathfinders” is a very deliberate use of language
• New territory • Collaborate, learn, share, support • Catalyse community action and unleash a new
movement • Making sure that we know we are making a
difference • Support into 2015/16
www.dyingmatters.org
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“Pathfinders” – we want to learn from localities implementing the Charter on how it works.� This is, as explained earlier, new for us.� By selecting eight Pathfinders, with six of them supporting buddies, we hope to see localities interacting and sharing learning and experience� Ultimately – the aim of linking these communities to unleash a social movement� We hope to evaluate the Charter, too, and have designed a tool to be used by local organisations, with ten criteria for assessing how much is being done in communities to provide care and support to people at the end of life and their carers. Support into 2015/16 is expected to include: quarterly meetings of Pathfinders, each to be held at a different site (two Pathfinders have already expressed interest in hosting these) a “lessons learnt” publication – based on a questionnaire we’ll be asking you to complete in a year’s time a national conference on community resilience (involving the Pathfinder and buddy communities) in early 2016 NCPC will also be exploring ways of bringing further funds into the project to support pathfinders.
