End of Life Care

Barbara Keeley Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I join other Members in thanking the Chairs of the Select Committees for the work on the reports that we are debating today. I was a member of the Health Committee when it produced the end-of-life care report.

Although Ministers have talked of rising to the challenge of improving palliative care, they have yet to take the action needed. They have not responded to the independent panel’s “Choice” review report published in February 2015. I know that the Minister and his colleagues repeatedly promised to respond to that report by the end of 2015, although I note that the Minister has recently changed to saying they will respond “soon”. The hon. Member for Strangford (Jim Shannon) noted that 48,000 people have experienced poor end-of-life care since the “Choice” review was published. Given that figure, we need a swift Government response now, and I ask the Minister to tell us when he expects that response.

As many Members have mentioned, the palliative care workforce works extremely hard to provide good care for people nearing the end of their life. We owe a debt of gratitude to our hospices, palliative care staff in hospitals, and Macmillan and Marie Curie nurses, because when end-of-life care is delivered well, the benefits to the patient and the family are immeasurable; when it is delivered badly, it can cause considerable pain and distress to those involved.

Even though we have the excellent St Ann’s hospice in my constituency and we have one of the best hospitals in the country in Salford, I have dealt with cases in my constituency where end-of-life care has not been delivered as it should have been, leaving bereaved family members distressed and anguished. The National Council for Palliative Care has said that despite high aspirations,

“there is still unacceptable variation, which would not be tolerated in any other area of practice.”

The ombudsman’s report shows us the consequences of people dying without access to high-quality care and support.

In my constituency I have had cases with similar failures to those that the ombudsman highlights—not recognising that the patient is dying, not responding to their needs, poor symptom control, poor communication and inadequate out-of-hours services. One of the cases I dealt with happened in 2005 and was included in a previous report by the ombudsman. Another occurred in 2013. It worries me that I have had constituents suffering the same heartache caused by poor end of life care when it is clear what needs to be done to improve their care.

My constituents died without dignity and in pain. Their carers and family members were left to run around trying to find suitable pain control for them, which meant that they lost the chance to spend precious time with the family member who was dying. The SNP spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), has just highlighted for us how important it is to have those last few hours with a loved one. The Health Committee report recommended that a named clinician support the co-ordination of care. Clearly, that would help in so many cases, and the idea was supported by the right hon. Member for Wokingham (John Redwood).

We know that each year around 500,000 people die in England and Wales and half of those deaths occur in hospitals, so we must make sure that end-of-life care is fit for purpose in all settings and that staff are trained to recognise when someone is nearing the end of life. However, the End of Life Care Coalition tells us that NHS England has made no substantial move to invest in palliative or end-of-life care. Investment in those services is essential to ensure that they are co-ordinated and that people receive the correct care wherever they are.

The Health Committee report asks the Government and NHS England to set out how universal, seven-day access to palliative care could become available to all patients, including patients with a non-cancer diagnosis. Marie Curie tells us that only one in five trusts in England provide face-to-face access to specialist palliative care seven days a week from nine to five, despite this being the National Institute for Health and Care Excellence standard since 2004, and only 2% of trusts provide a 24/7 face-to-face service. People should not have to die in pain and distress because trusts are not complying with a decade-old NICE standard.

A common theme in the Health Committee’s reports has been the need to ensure that choice is on offer. People want to have choice. Will the Government review the choice on offer for children and young people at the end of their lives, as they have done for adults? I have a further concern that without proper investment in community services and specialist palliative care services, choice will remain restricted. In the previous Parliament the number of district nurses fell by 2,400, and many other community nursing posts, particularly senior posts, were cut. With such a hollowing out and deskilling of the community sector, I am concerned that the nurses who provide end-of-life care services are coming under increasing pressure, without the time or specialist skills to provide the quality care and compassion needed at the end of life.

My hon. Friend the Member for Burnley (Julie Cooper) raised the serious issue of the level of cuts to adult social care. We know that we have already lost £4.6 billion from adult social care budgets since 2010. The King’s Fund, the Health Foundation and the Nuffield Trust have said that there will be a gap of around £3 billion in social care by the end of this Parliament. As we approach the Budget, it is important to acknowledge that the Government’s funding plans will not address that gap. The Local Government Association reported last week that councils are looking at council tax options that will raise only £370 million this year, which is less than the Government predicted. The promised better care funding is back-loaded, with nothing this year and only £100 million next year. In my local authority area, Salford, we will raise only £1.6 million this year, compared with cuts of £15 million since 2010.

GPs are also finding that they are under increasing pressure. In a recent survey, around 70% said that their workload is sometimes unmanageable, and over half said that the service they provide has deteriorated in the past year. One factor that is key to providing quality end-of-life care—we have heard about this in this debate—is ensuring that doctors and nurses have time to have the conversations needed with patients, families and other care providers, but the funding and staffing pressures I mentioned will not help staff to have time for those conversations.

The Health Committee’s report called for free adult social care at the end of life, and we made that a commitment in the Labour party manifesto, as my hon. Friend the Member for Luton North (Kelvin Hopkins) mentioned. In recommending that, there is clearly the issue of where we find the funding that we have talked about in this debate. It is clear that offering better support in the community would mean fewer hospital admissions. Too many people approaching death are forced to spend long periods of time in hospital owing to a lack of social care or alternative support options, and that is unsustainable.

The Chair of the Health Committee referred to the Nuffield Trust’s evaluation of the Marie Curie nursing service, which found that people cared for by a Marie Curie nurse had total care costs of around £500 less per person, and hospital stays and costs were often avoided. Only 8% of Marie Curie patients died in hospital, compared with 42% of people without a Marie Curie nurse. The End of Life Care Coalition thinks that those results can be replicated in other palliative care nursing services. Free adult social care at the end of life could also help to reduce the inequalities that currently exist in end of life care services due to age, gender, diagnosis, geography and deprivation, as has been mentioned.

We have heard that 88% of palliative care in-patients and 75% of new referrals were for people with a cancer diagnosis, even though cancer accounts for only around 29% of deaths. Older people receive less specialist palliative care than other age groups: only 16% is provided to people aged 85 or over, although 39% of deaths occur in that age group. We should be delivering services that enable someone living with dementia and someone living with cancer to receive the same quality of end-of-life care.

Will the Minister tell the House whether the Government will implement free social care for people nearing the end of life? The Opposition believe that altering the funding criteria for NHS continuing healthcare is not enough. He said in response to an earlier debate on end- of-life care:

“We have enough paper evidence. We know what looks good, how to make it happen and that it needs to happen, and we know that many people die in circumstances that leave much to be desired.”—[Official Report, 4 November 2015; Vol. 601, c. 1089.]

We need action. We need a response to the “Choice” review, describing what action the Government will take on the key issues of choice, funding for end-of-life care and social care services, co-ordination and the identification and support of carers. If end-of-life care is the litmus test for health and social care services, we are currently failing it for too many people. We need good quality, compassionate end-of-life care to be available so that each person nearing the end of life can feel supported and safe in the knowledge that they will receive the very best care.

--- Later in debate ---

[Barbara Keeley]

It sounds as though the Minister is about to conclude his remarks, but he has not yet said when the Government will respond to the “Choice” review, which I asked about, as did several other Members. That is very important.

[Ben Gummer]

As I have made clear publicly, we will respond in short order to the “Choice” review, but I want to get this right. It is important that we make the content of the response as good as possible, and I do not want to compromise on that. Moreover, the hon. Lady’s party did not bring forward such a review.

This has been a very good debate on all sides. I am delighted by the cross-party support for the need to make changes. I hope that we will return to this debate in the weeks and months ahead and will be able to continue making a real change in the way that we approach death and end-of-life care in this country.