National Council for Palliative Care & Dying Matters Coalition

The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, hospice and end of life care in England, Wales and Northern Ireland. NCPC leads the Dying Matters Coalition to raise awareness and change behaviours around dying, death and bereavement.

Updated:
10 February 2016
Location:
National
Sectors:
Health, Care, Voluntary Sector

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The National Council for Palliative Care is the leading umbrella charity for all those involved in palliative and end of life care. Supporting people with dementia and their carers to have access to high-quality personalised care that meets their individual needs and preferences until they die is a priority role for us. 

NCPC is at the forefront of ensuring that dementia and end of life care work in partnership. It is our role to keep supporting greater integration between the two. Our expert group on dementia provides a unique and powerful combination of expertise from dementia organisations (including Alzheimer's Society and Dementia UK), the care home and housing sector (including Anchor Trust, Bupa and the National Care Forum) and palliative care services. It produces influential publications and training to support development of services responsive to the needs of people with dementia approaching the end of life.  

NCPC is also leading the national Dying Matters coalition to raise public awareness and equip people to talk about and plan for their end of life and support a good death. Early planning is particularly important for people with dementia and their families to help them make informed choices. Through information and support, Dying Matters is helping local communities and professionals have the skills to do this effectively. 

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

There is a growing recognition of the need for palliative and end of life care to work in partnership with dementia care. However, increased training of both dementia staff and palliative care staff is vital. Training on end of life care in dementia must be integral to curricula for all professionals working with people with dementia and their families. The rapidly growing numbers of people with dementia and the anticipated rises in death rates will increase the demand for services. At present, between 60 and 70% of people want to die at home but most people die in hospital. Reversing this trend for people with dementia is a particular challenge. It needs early communication and planning for people's preferences and needs to be identified and met. Likewise, community and home based services need to be strengthened to respond to the demand.  

Member website

http://www.ncpc.org.uk/

2. Actions

  • National conference on dementia

    We will hold an annual national conference on dementia and end of life care.

    Status:
    Planning

    2013 - Second Quarter Update

    We are planning our 8th Annual Conference on Dementia & End of Life Care in London in December 2013. This conference will focus on ensuring that the last years of life for people with dementia are not 'lost years' and that are able to live well within their community until the end of life.

    2013 - First Quarter Update

    In December 2012 we successfully held our 7th Annual Conference on Dementia & End of Life Care. The topic was Rising to the Prime Minister's Challenge which meant a focus on the three key aspects of the Challenge and was an opportunity to share examples of good practice in relation to end of life care. The conference saw the launch of exciting new resources to support people with dementia until the end of life.

    2012 - Third Quarter Update

    Our 7th Annual Conference on Dementia & End of Life Care: Rising to the Prime Minister’s Dementia Challenge is taking place in London on 4th December 2012. This conference brings together the three key aspects of the dementia challenge and will identify and showcase existing good practice that will help to meet these challenges. For further information or receive a programme for this event please contact Kate McNaboe (k.mcnaboe@ncpc.org.uk).

    2012 - First Quarter Update

    We held our sixth annual conference on dementia and end of life care in partnership with Alzheimer’s Society and Dementia UK on 12th December 2011. Interactive theatre and good practice workshops were accompanied by speeches from Professor Alistair Burns and the former Secretary of State Rt.Hon. Hazel Blears MP, who shared for the first time her family’s moving experience of dementia. Alzheimer’s Society’s Chief Executive Jeremy Hughes identified his top ten priorities and provided the take-home message of the day: “we cannot afford not to talk about end of life care in dementia”.

  • Develop publications and training resources

    We will continue to produce publications and training resources.

    Status:
    Delivery

    2013 - Second Quarter Update

    NCPC have launched a new publication, produced jointly with Marie Curie Cancer Care, called 10 Questions to ensure good end of life care in your area. This document aims to help people in their localities scrutinise and challenge MPs, GP Commissioners, councillors and other decision makers reagrding end of life care. It will be used as the basis for our future campaigning around end of life care and sets out key information people need to champion end of life care in their area and help bring the dementia and end of life care agendas together.

    2013 - First Quarter Update

    A new DVD from NCPC & the Dying Matters coalition to help GPs support people with dementia at the end of life. Time to Talk, Doc? aims to build the confidence of GPs to initiate end of life care conversations with people in their registers who have dementia. The DVD is being shown at workshops that NCPC are rolling out, in partnership with Macmillan Cancer Care, to improve GPs overall communication with their patients at the end of life.

    NCPC also produced a mapping briefing for delegates at the conference on dementia and end of life care. This briefing set out why end of life care is a key part of the dementia challenge and mapped areas of good practice, showing that achieving a good death for a person with dementia is possible. It also had a section on myth busting, as many have misconceptions about the condition and those who live with it.

    2012 - First Quarter Update

    The January 2012 edition of our monthly e-newsletter Policy Roundup included a spotlight of dementia, highlighting the Health Secretary Andrew Lansley’s commitment at the DAA conference to producing a mid-term review of the Dementia Strategy, the launch of the All-Party Parliamentary Group on Dementia inquiry into diagnosis rates, SCIE’s new online dementia resources and other developments.

  • Continue to respond to national consultations

    Continue to respond to national consultations and inquiries highlighting the importance of integrating dementia and end of life care.

    Status:
    Case study

    2012 - Second Quarter Update

    NCPC submitted evidence to the All Party Parliamentary Group on Dementia which is undertaking an inquiry into dementia diagnosis rates in the UK. Our evidence focused on the fact that people need an early diagnosis in order to understand what is happening to them, get access to the services they need, and to plan for the future while they still have the capacity to do so, including for their end of life care. You can read our evidence at www.ncpc.org.uk/page/consultations .

    2012 - First Quarter Update

    As part of our response to NICE’s draft Quality Standard for End of Life Care we highlighted the need for the document to acknowledge that people with dementia will need to plan ahead of the last twelve months (the remit of the Standard) and to link to the dementia strategy. Our recommendations were incorporated into the final Quality Standard published by NICE in November 2011.

  • Develop training and communications guide

    Seek to develop training and communications guides to help professionals talk about end of life care issues with people with dementia and their families.

    Status:
    Delivery

    2013 - Second Quarter Update

     Two further bids for similar dementia training and support were successful in NHS South in Dorset and in the South East and project plans are currently being developed. We shall continue to roll out workshops with GPs to help build their confidence in initiating end of life care conversations with people with dementia.

    2013 - First Quarter Update

    We have commenced a training project with North Hants CCG following a successful bid to the NHS South of England Dementia Challenge fund in 2012. We are training GPs with the aim of increasing confidence in initiating and holding end of life care conversations with people living with dementia. Adapting the NCPC/Dying Matters evaluated model of GP training to be dementia specific we held a pilot training workshop in May and further workshops will be held to cover the whole CCG over the next 9 months and will be evaluated for its impact.

    2012 - Third Quarter Update

    The Dying Matters coalition launched a new leaflet at the meeting called Time to Talk? Which aims to help people with dementia and those around them, plan for the future and end of life at an earlier stage. Find out more and how you can get copies by visiting http://www.dyingmatters.org/news/dementia-leaflet-launched .

    2012 - Second Quarter Update

    In progress.

    2012 – First Quarter Update

    We ordered a reprint of Difficult Conversations for Dementia, as 3,000 copies had already been distributed by the end of 2011.

  • Working on Prime Minister's Dementia Challenge

    We will be working hard to make the Prime Minister’s Dementia Challenge a reality with the help of our Dementia Working Group.

    Status:
    Delivery

    2013 - Second Quarter Update

    NCPC supported the Dementia Village at the NHS EXPO in London. We had a stand showcasing our publications and work with the Prime Minister's Dementia Challenge.

    2013 - First Quarter Update

    As part of the Prime Minister's Dementia Challenge NCPC were asked by Number 10 to produce guidance helping professionals and unpaid carers address pain & distress for people wtih dementia. This is sometimes called 'challenging behaviour' and is too often left unaddressed. We have currently sold almost 10,000 copies of How would I know? What can I do? This resource is being evaluated and so far feedback has been very positive.

    2012 - Third Quarter Update

    We welcomed the DH and Alzheimer’s Society new programme of work on dementia friendly communities, and have offered our support to develop it. Our contribution will build on our 2030 Vision, which highlights the need to develop communities fit for purpose to support the growing numbers of older people and people with multiple long-term conditions living and dying in the community. We published a report on this in February with fellow DAA members the National Care Forum. Read more at www.ncpc.org.uk/news/85 .

    2012 - Second Quarter Update

    NCPC attended the Alzheimer’s Society annual conference on 26th March, where the Prime Minister David Cameron made a personal commitment to tackling the ‘dementia challenge’ and launched the new document Prime Minister’s challenge on dementia. We were very pleased that No.10 decided to put its weight behind improving dementia care and research, but disappointed that the document did not make explicit reference to the importance of palliative and end of life care in dementia. We and other organisations felt this was a missed opportunity as we have been working so closely together to join up the implementation of the End of Life Care Strategy with the Dementia Strategy. Subsequently NCPC wrote to Number 10 with Age UK, Dementia UK, Help the Hospices, the National Care Forum and Sue Ryder to offer our organisations’ help to ensure that the Dementia Challenge delivers improvements in the care of people with dementia right until the end of life. We are delighted that the challenge now includes end of life care and we are part of the Dementia Health and Care Champion Group. We and our partner organisations will now work hard with the Prime Minister and DH to make this a reality. Read more at www.ncpc.org.uk/news/93 .

  • Work with Dying Matters

    Continue to work with the Dying Matters coalition to raise awareness for the need to start discussions about death, dying and bereavement.

    Status:
    Completed

    2013 - Second Quarter Update

    The fourth annual Dying Matters Awareness Week (13-19th) was a huge success. We encouraged people to take 5 steps towards ensuring that they die well. These included: making a will; recording funeral wishes; plan future care & support; register as an organ donor; and tell loved ones your wishes. All of these steps will make things easier for you and those close to you at the end of life. A few highlights from the week were: The Inaugural Dying Matters Lecture, which was in memory of Philip Gould, one of Tony Blair's most influential advisers, who wrote powerfully about his impending death; and the #finaltweets campaign on Twitter. More information and highlights from Dying Matters week can be found on the Dying Matters website www.dyingmatters.org .

    2013 - First Quarter Update

    Preparations were underway for the fourth annual Dying Matters Awareness Week (13th -19th May) which aims to get the nation talking about dying, death and bereavement. This year's theme is 'Dying Matters: Be ready for it' www.dyingmatters.org .

    2012 - Second Quarter Update

    Preparations were underway for the third annual Dying Matters awareness week (14-20 May), which aims to get the nation talking about dying, death and bereavement. www.dyingmatters.org .

  • Expert group on Dementia

    Working with our expert group on dementia, we will continue to lobby for greater integration of palliative and end of life care with dementia.

    Status:
    Planning

    2013 - Second Quarter Update

    The next meeting of NCPC’s Dementia Steering Group will take place on Wednesday 26th June where we shall discuss progress on the challenge, mapping good practice and finalise speakers and themes for the 8th Annual Dementia & End of Life Care conference in December 2013.

    2013 - First Quarter Update

    NCPC’s Dementia Steering Group met on 28th February to discuss any updates on the Prime Minister’s Dementia Challenge; the mapping of good practice of end of life care and dementia; and also to reflect and share learning on members individual work and projects.

    2012 - Third Quarter Update

    We organised a meeting of the All-Party Parliamentary Group (APPG) on Hospice & Palliative Care on 11th July to explore the role of palliative and end of life care in the Prime Minister’s Dementia Challenge. A key message of the meeting was that societal change towards both dementia and dying was urgently needed. The Rt. Hon. Hazel Blears MP joined to talk about the report the APPG on Dementia had launched the previous week, Unlocking diagnosis: The key to improving the lives of people with dementia. The Care Services Minister Paul Burstow joined to talk about the importance of early diagnosis to improve advance care planning. You can read a full report of the meeting by visiting:

    http://www.ncpc.org.uk/appg-july-2012

    2012 - Second Quarter Update

    NCPC’s Dementia Group, a cross cutting group of representatives from dementia, social care, housing and palliative care organisations, met on 11th April to discuss its next steps. Karen Harrison-Dening updated the group on work undertaken by Dementia UK to train primary care staff in advance care planning for people with dementia. This work linked well with Dying Matters GP training project which is entering a ‘train the trainer’ phase. The group also heard from Dr Paul Schofield, from NAPP Pharmaceuticals, who spoke to the group about the problems surrounding piloting pain management medication with people who have dementia. A number of actions were identified to be taken forward.

    2012 - First Quarter Update

    Our Dementia Group, a cross cutting group of representatives the dementia, social care, housing and palliative care organisations, met on the 23rdNovember 2011 to discuss next steps and its role joining up of the range of work underway. Dr Liz Sampson, member of the group and Senior Clinical Lecturer at the Marie Curie Palliative Care Research Unit and Martina Kane from Alzheimer's Society’s presented on their respective work exploring palliative care for people with dementia. The group is seeking funding to continue its work into 2012/13, and is particular keen to expand work in the hospital setting.

    We were proud to host a roundtable discussion at the first ever Dementia Action Alliance (DAA) conference on 29th November 2011. Alice Fuller, NCPC’s Policy & Parliamentary Affairs Lead, led an interactive session based on our Difficult Conversations for Dementia work and wider materials. She asked participants to reflect on how much they’d thought about dying, death and bereavement, what plans they’d made and whether they’d discussed their wishes with their friends and family.  Participants then brainstormed issues relating to end of life care for people with dementia, with issues around mental capacity and advance decision making particularly highlighted. Each participant took away a copy of Difficult Conversations and a pledge to do three things as a result of the discussion, as well as an invitation to join the Dying Matters coalition.

  • Action Plan 2015-16

    Publish guidance on care-planning & co-ordination for people affected by dementia

    Status:
    Being implemented

    2015 - Second Quarter Update

    This is in draft and will be published during 2015-16 on a date to be confirmed.

  • Dementia & End of Life Care Conference

    We will hold the 10th Annual Conference on Dementia and End of Life Care, on 1 December 2015. The theme will be the PM's Dementia Challenge to 2020.

    Status:
    Being implemented

    2015 - Second Quarter Update

    We are currentlly planning the programme for this conference.

    If you're interested in contributing as a speaker please contact Simn Chapman on s.chapman@ncpc.org.uk

    If you're interested in attending or having a stand at the conference please email Mary McColgan on m.mccolgan@ncpc.org.uk