The Government's White Paper 'Caring for our future' and the plethora of documents which accompanied it represent something of a double edged sword for those of us working to improve services for people in the last few days and months of life.
Viewed solely from the standpoint of terminally ill people, their families and carers, 'Caring for our future' feels like something of a watershed. Here we have a government policy statement which includes a strong emphasis on what we somewhat euphemistically call 'end of life care'. This feels like a major step forward, as end of life care is often thought of as the domain of health services with little recognition that many people who are terminally ill also require support from social care.
The Government's proposals are hugely important proposals which we believe have the potential to significantly improve services for terminally ill people, their families and carers. We are pleased that the Government has listened to the arguments that we have been making by indicating that it supports 'in principle' giving terminally ill people access to free social care. In addition, the Government has indicated that it will extend intermediate care to people in the last few weeks and months of life. At present, the lengthy process of means testing, which is required before a care package can be put in place, leaves too many people stranded in hospital beds and unable to make informed choices about where they die. Taken together, these two measures will enable terminally ill people to get out of hospital quickly, and with the right support.
The Government has also committed itself to legislate to give adult social care services a power to assess young people under the age of 18. This was one of the recommendations of our recent 'Don't let me down' report with Together for Short Lives. This will make a huge difference for many young people with palliative care needs who are making the difficult transition from children's to adult services.
We are also pleased that the Government has committed additional funding to the Palliative Care Funding Review pilots so that they can begin to collect data about social care use. This should ultimately give us the data which will enable us to demonstrate social care needs and remove the logjam in this crucial area.
However, taking a step back and looking at the white paper from the standpoint of what it would mean for people before they enter the final stage of their life, things look very different. We are concerned that the Government's proposals fail to properly deal with an issue which profoundly affects so many people in the months and years before their terminal illness enters the final phase, and they become eligible for a number of the proposed measures.
The central issue is that the proposals have been published before the Department of Health has been able to agree the required funding with HM Treasury for a truly revolutionary overhaul of the social care funding system. As a result, the Government has settled for an unsatisfactory halfway house in which it states that it 'supports in principle' the Dilnot proposals, but does not advocate the introduction of a Dilnot style cap on social care costs and raising of the means test. Instead, it proposes the extension of the existing loans scheme already being operated by a number of English local authorities (but with added interest). Consequently, the White Paper fails to 'grasp the nettle' of wholesale social care funding reform.
The representatives of local authorities had already made clear the urgency of the social care funding challenge, issuing dire warnings regarding the cost of substantive reform - they argue that that other local authority funded services such as libraries, social services and waste collection face cuts of up to 90 per cent by 2020. If such predictions come to pass, we face a stark choice between finding a long term solution to the funding of social care or a radical rethink about what we expect from our public services. As it stands, it is clear that we can not have both. The Government proposals arguably place further pressures on local authorities at a time when they are already facing unprecedented cuts to their budgets.
We are disappointed that the Government, like its predecessors, has failed to tackle what is arguably the biggest challenge currently facing society - the need to urgently find a workable, sustainable and fundable model for social care funding. It is particularly disappointing that the cross-party talks process has failed to deliver what the nation needs them to deliver. If ever there was an issue which required consensus and cross party agreement this is it. How we fund social care is too important an issue to be used as a political football. Indeed, given the sheer number of people affected, one would have thought that the nation's politicians would be focused on achieving a solution.
The failure to agree a long term solution to the current social care funding crisis has profound implications for those in the last months and years of life. Whilst 'Caring for our future' proposes a number of measures which, as we have seen, could improve provision for those in the last six months of life, the reality is that the wider White Paper does nothing to address the chronic funding situation for those who have long term and ultimately terminal conditions who have not yet entered the very final stage of their lives. In order to genuinely improve things for those who are terminally ill, we have to find a sustainable solution to the long term funding of social care.
As in so many other aspects of 'end of life care', the old mantra that we only have one chance to get this right seems particularly apt in this instance. Whether it is in respect of individual lives, or finding a long term solution to the social care funding crisis, we only have one shot at this. This should be the number one priority for politicians across the political divide. The alternative is that we condemn people to live out their final days in the wrong places, with the wrong care and with their families totally unsupported.
Follow Imelda Redmond CBE on Twitter: www.twitter.com/MarieCuriePA