APPG: July 2012

Rising to the Challenge: Taking forward the Prime Minister's Dementia Challenge

The All Party Parliamentary Group (APPG) on Hospice & Palliative Care met on 11th July to debate the Prime Minister's Dementia Challenge and discuss how it can take the challenge forward to ensure that every person with dementia receives excellent care at the end of end of life.

The APPG's Chair, Fabian Hamilton MP, opened the meeting by welcoming the packed audience and highlighting why getting end of life care right for people with dementia is so vital. He emphasised that:

"1 in 3 people over the age of 65 will die with dementia. The figures are sobering; this is an issue which affects all of us; everyone knows somebody affected by dementia. It transcends party politics".

Fabian then welcomed NCPC & Dying Matter's Director of Public Engagement, Sam Turner, to present some powerful case studies to the group. The two case studies focussed on what good and bad end of life care can look like for people with dementia and highlighted the need to ensure that everyone receives the care and dignity that they deserve at the end of life, regardless of their condition.

The group then heard from Paul Burstow, Minister of State for Care Services. After launching the Social Care White Paper earlier that morning, the Minister had a captive audience. He stated that free social care at the end of life “should be our ambition” but that the government need to better understand the funding implications. The Minister reaffirmed the government's intention, as announced in the White Paper, to collect this data as part of the Palliative Care Funding Review pilots, with a decision about offering free social care at the end of life to be made on the basis of affordability.

The Minister went on to discuss the importance of early diagnosis and described it as a “key component” for people with dementia and their carers. The Minister made a commitment to improving diagnosis rates, as part of the Dementia Challenge, and NCPC will continue to work with the Dementia Action Alliance to make this a reality. However, the Minister also pointed out that an early diagnosis should not be viewed as an end in itself, it must be accompanied by the right services and care, as well as advance care planning.

At the end of his talk, the Minister helped to launch the eleventh Dying Matters leaflet, Time to talk?, which covers end of life care discussions and planning for people with dementia. Speaking at the launch, Sam Turner said

 “End of life care conversations with people affected by dementia, far from being morbid, actually allow people to make decisions and give them control over what happens to them later on. This leaflet sets out issues to consider and tips to make it easier for those initiating the conversation. We hope it will be a helpful resource resulting in people with dementia getting their wishes met at the end of life."

 The Minister said:

 “One of the reasons we need an early diagnosis is that it will help us to improve advance care planning. [This] ensures decisions about end of life are made at the point when the person with dementia still has an ability to shape decisions [and can] express their preferences, wishes and feelings about the type of care they receive and the place in which they receive it, and, ultimately, the place in which they die. [This helps to] ensure that we do not have situations where people are admitted at the last minute into hospital, and – as we know now from survey work – experience less good end of life care as a result.”

Professor Sir Mike Richards joined the APPG to discuss the recent findings of the survey of bereaved carers. He highlighted that one fifth of responses to the survey were related to dementia and that 1 in 10 responses relating to dementia rated their end of life care in the last 3 months of life as ‘poor’. He pointed to the marked variation in different areas of the country and told the group that this gave us something clear to aim for in terms of improving dementia services. The full findings can be found here.

Jeremy Hughes, Co-Chair of the Dementia Friendly Communities Champion Group and Chief Executive of the Alzheimer's Society, said that the Dementia Challenge was not an initiative just for the health and social care world – it must mark the start of a societal shift in how our communities react to people with dementia and those approaching the end of life.

Hazel Blears MP, followed on from this and claimed that a as a country, our humanity will be judged depending on how we treat these vulnerable people within our communities. She went on to speak about the inquiry the APPG on Dementia had launched one week prior to the meeting, Unlocking Diagnosis: The key to improving the lives of people with dementia. A key message of the report is that a diagnosis of dementia, which is currently only given to 43% of those living with the condition, helps people to take control of their lives and plan for the future whilst they still have the capacity to do so. Ms Blears commended the leaflet, Time to talk?, but highlighted that the first step for someone with dementia, is to get a diagnosis.

Fabian Hamilton drew the meeting to a close with an important reminder that

“In a time of reform and austerity it is vital that we do not lose sight of the people whose lives are affected by dementia; we need to ensure that they and their families get the care and support that they need right until the very end of their lives. We only get one chance to get it right for them”.

To view the programme click here.

To view photos from the day click here.

The programme for the next meeting of the APPG on 27th November, can be viewed here.