My Lords, the Government have to be commended on bringing forward this Bill to reform the current system of social care and thus bringing in a fairer system. Many noble Lords have commented on the financial issues, saying that adequate finances will be required to make sure that the ambitions of the Bill are delivered. Noble Lords have also commented on another important issue, that of the eligibility criteria that are to be used. If these two things are not met appropriately, the duties being placed on local authorities in Clause 1—promoting well-being, preventing deterioration and reducing need—will be difficult to meet. It will also mean that more people end up in A&E, in primary care and as in-patients.
I am concerned about two other issues. As yet, the Government have not accepted the need to provide free care and support for cancer patients at the end of life. I remain encouraged by the comment made by the noble Earl when we considered this issue in the debate on the gracious Speech. He said that there was “much merit” in the idea. I hope that he will be able to convert the thought that the proposal has much merit into an amendment that the Government will bring forward.
A survey by Macmillan Cancer Support has shown that 91% of cancer patients at the end of life wish to die at home or in surroundings familiar to them. The barrier to this is the lack of care and support they need along with complicated, lengthy and stressful processes to access funding for care. Financial means testing when patients are dying does not seem to be compassionate or caring. The argument for providing free social care at the end of life is strong. It will deliver the Government’s vision of integration and choice. Research by the Nuffield Trust shows that a saving of some £52 million a year could be made through reduced hospital admissions. I hope sincerely that the Government will amend the legislation to do this, or accept an amendment that I will bring forward.
There is also the issue of the support that the carers of cancer patients get or, rather, that they do not get. Almost 1 million cancer carers give their valuable time to this, saving services probably in the region of £12 billion a year, yet half of them receive no support at all and the other half very little. This is partly because most of them do not see themselves as carers and are unaware of their rights; fewer than 5% get any assessment at all. What would help is if a similar duty as the Bill puts on local authorities is placed on the NHS to work with local authorities to identify the support needs of carers who are themselves supporting cancer patients. Cancer carers will then receive the support they deserve.
The other areas of concern to me relate to Clauses 55 to 63, also referred to by the noble Lord, Lord Rix, and I associate myself with his comments. I want particularly to make a point about the support and care of children and young adults during the transition period. More than 40,000 children and young people aged between one and 19 in England have long-term conditions which, for the most part, will end their lives or for which they will require palliative care. They may have complex health conditions and severe disabilities, and for the most part they are looked after by parent carers. This is not end-of-life care, but care that brings some comfort, respite, the relief of suffering, and a little bit of quality of life. Evidence shows that while they are children and in their early teens, these young people receive support from children’s services. In their late teens they begin to receive services from adult services, but that support is often reduced, fragmented and disjointed. Parents describe this transition of care as “standing on a cliff, about to fall into a black hole”. It is not difficult to imagine the stress and anxiety it must cause to young people and their carers.
The proposals in the Bill are a step forward, but in my view they need to go further. A consortium of charities which has grouped together under the charity, Together for Short Lives, feels that this provision needs to be strengthened. The Bill should make it clear that when a young person reaches the age of 14, local authorities should initiate transition planning with the young person, their family and the relevant agencies, so that by the time they reach the age of 16 a five-year rolling programme for their support and care is in place. I hope that the Government will be sympathetic to this and that the Minister, if he is able to do so, would be willing to meet with representatives from Together for Short Lives and myself.
Part 2 of the Bill relates to performance rating. I support in principle the idea of introducing a system that assures quality of delivery of health and social care. Suffice it to say at this stage that whatever the final system that is introduced is like, it has to be credible and have the confidence of both patients and health professionals. If it is going to be based on three domains of quality—clinical effectiveness, patient experience and patient safety—the dataset needed to achieve this in an equitable and fair way is available for some areas, but not all of them. I hope that the Government will see the introduction of assessment as formative and embedded over a period of time, evolutionary in helping to develop appropriate datasets leading to improved services, rather than a one-off assessment that identifies only failures and shortcomings.
I am very familiar with a system based on standards that encompass the three quality domains of clinical effectiveness, safety and patient experience, but using a different process that works. I know of no system within our national healthcare that is similar to the proposals, although of course there are large healthcare providers which are using a similar methodology. I look forward to the debate on this subject and hope to contribute to it.
Perhaps I may comment briefly on the other parts of the Bill, starting with Health Education England. In my view, the Government have brought in provisions that we agreed in principle in the Health and Social Care Bill. The Government have to be commended on doing this and I thank the noble Earl. I am also encouraged by the appointment of Professor Wendy Reid as the medical director. Health Education England will have someone with huge experience and skills in health education. My only comment relates to the local education and training boards. Why is there not a duty placed on them to promote research and research training, a point also mentioned by the noble Lord, Lord Willis of Knaresborough?
As for legislation related to the Health Research Authority, its current role is small and we will want to see how it evolves. I recognise the comments made by the noble Lord, Lord Willis, about too many regulators in the area of health research. I hope that the Government will look at this, while the inquiry into regenerative medicine may also give rise to some comments. I think that the Government are right not to put a duty on the Health Research Authority to require the publication of the results of research. It is much better that the authority should work with others to encourage the publication of research and that it develops over time an appropriate methodology. The mandatory publication of research by the authority would have been the wrong thing to do. It does not work; it has been tried in other countries, including the United States.
As for the Human Fertilisation and Embryology Authority, the original Government thinking was right, but now that they have changed their mind and have decided to keep the authority, I hope that it concentrates on its key role of improving services related to infertility.
In conclusion, on the whole I am supportive of this Bill and hope that the Government will be sympathetic to amending some of the areas I have alluded to in order to help improve the lives of those most in need of care and support.
6.19 pm