APPG: December 2013

The Prime Minister's Dementia Challenge: Ensuring the Last Years of Life are not the Lost Years


On 4 December the All Party Parliamentary Group on Hospice & Palliative Care held a joint meeting with the All Party Parliamentary Group on Dementia. The meeting focussed on the need to rise to the Prime Minister’s Dementia Challenge and ensure that the last years of life are not lost years for people with dementia.

Both Norman Lamb MP, Minster of State for Care and Support and Andy Burnham MP, Shadow Secretary of State for Health, addressed the meeting and pledged their support for joining up these important priorities. Norman Lamb updated the meeting on the Dementia Challenge and emphasised the need to ensure good end of life care for people with dementia. He referred to the common complaint that too many GPs fail to give a timely diagnosis of dementia, because of the belief that nothing can be done. He highlighted the importance of an early diagnosis in offering people the opportunity to plan for their future end of life care and make plans so that they can live their last years of life well. He stated that:

“we need to be focussing on every part of dementia care from the initial diagnosis through to end of life care. We talk about living well with dementia, but what about dying well too”.

Andy Burnham also highlighted the need to create a more integrated health and care system so that people with dementia can have all of their needs met by the same system, right up until the end of life. He set out his vision for ‘an NHS that sees the whole person’ and does not fragment need into physical, social and mental.

The Government are currently considering the viability of a national choice offer to allow people the right to die at home if they wish to do so. At the meeting both Norman and Andy emphasised their support for such a mechanism to support people to choose to die at home, whether as a “right” or as part of a “national choice offer”. However careful thought does need to be given to how such an “offer” or “right” would work in practice. NCPC are working with the Department of Health to deliver an expert workshop to look at such questions in February which Norman Lamb MP will be attending. Unfortunately numbers for this workshop are very limited, but we shall be publishing a report on the discussion which we will be sending to all subscribers in due course.

The meeting also heard powerful accounts from people affected by dementia: Alex Burton, a person with early onset Alzheimer’s, and Margaret McKenna, a former carer for someone with dementia, who both spoke of their struggles and the current barriers in the health and care system, preventing good care for people with dementia at the end of life. Alistair Burns, National Clinical Director for Dementia at NHS England, stated that these personal experiences brought home exactly why it is so important that we work to ensure that everyone is able to live and die well with dementia in their communities, and updated the meeting on the work currently being done by NHS England.

Eve Richardson, Chief Executive of NCPC, and Jeremy Hughes, Chief Executive of Alzheimer’s Society, brought the meeting to a close with calls for action and pledging to work together to take this work forward and ensure that more communities across the UK become dementia friendly so that more people with dementia are treated with dignity and respect and feel supported in the last years of their life.

To view the event programme, please click here

For further information about the event, please email NCPC's Public & Parliamentary Engagement Officer, Alice Rigby,