My Lords, I echo the congratulations to the noble Baroness on her Private Member’s Bill, which takes us considerably further forward than the debate we have had over the past two to three years—indeed, for much longer. For far too long, patients across England have been victims of a system of palliative care that lacks not only consistency but the resources to help them.
Currently there is no method of accountability to ensure that CCGs are able to serve patients to the best of their ability. The situation is begging for a catalyst that will both empower CCGs and hold them to account for the work that they do. I echo the points of the noble Viscount, Lord Bridgeman, about the CCGs giving junior staff the responsibility for demonstrating that they have achieved the service level. I will give some illustrations later.
The standard of variation between the lowest budgets allocated for some patients by CCGs and the highest is quite extraordinary. No patient deserves to receive care so lacking that it is not palliative care at all. As the noble Baroness, Lady Finlay, said, we all have experience of comparing and contrasting. I had experience of two people who died at almost the same time. One had a brilliant palliative care service, working well with the hospital, the community and the county council adult social services—and, indeed, as this was a young mother, with the psychiatric support required for her children who were about to become, and then became, orphaned. In the second case, the patient was stuck in a hospital which refused to say that they were at the point at which they needed palliative care at a hospice. When that moment was recognised, the hospital said that they were too ill to be moved. This blocked a hospital bed for two weeks when the most appropriate care for the patient would have been elsewhere, as well as costing the district hospital. That was about training—both previous speakers have mentioned training and support—and it is absolutely vital that there is training throughout the system.
I appreciate that the noble Baroness, Lady Finlay, has tried to reduce the scope of the Bill, perhaps to gain support from the Government, but I am concerned that the latest version does not include the duty of clinical commissioning groups to provide patients with support to meet their preferences in care, which was in a previous version of the Bill, and support on advance decisions to refuse treatment under Section 24 of the Mental Capacity Act 2005. It would be useful to know why this has been removed. We know from recent cases that advance decisions are still poorly understood and inconsistently implemented—sometimes with tragic consequences—leading to that poor death to which the noble Baroness referred.
For most of my time I want to focus on access to palliative care for babies and children. This is an area in which I have worked for some time and I am grateful to the briefing from Together for Short Lives and for the work of the All-Party Parliamentary Group for Children Who Need Palliative Care and its excellent report. I am a member of that APPG but I did not take part in the inquiry.
This particular group seem at the moment, across the country, to be facing the most appalling cuts to services—partly, I suspect, because CCGs strapped for cash are trying to use the argument that this is not palliative care but social care. I know this from my own experience in south-west Hertfordshire, where we fought for two years to keep Nascot Lawn open for children. It was run by the local NHS, with support from the county council, and the parents won two judicial reviews against the CCG, which was not following procedure. The CCG then basically did a deal with the county and closed it down before any alternative provision was ready. Eighteen months on, one parent has still not had a respite weekend because there is no provision appropriate enough for her severely ill child.
That is the consequence of the postcode lottery. This is not a minor difference in care, and until CCGs are fully held accountable for the services they offer, and as long as they can hide behind not having the money to do it, we do not have a palliative care service commissioned by CCGs fairly across the country.
Together for Short Lives points to five areas in England where children currently face real difficulties. The first is access to palliative care out of hours and at weekends. That has already been highlighted as a general problem, but for children’s services—where limited beds, support and community nurses are available —this can turn into a real crisis. Many parents have told me that the only resource they have is to take their child to A&E, where they frequently know more about their child’s very complex condition than the A&E staff and the community nurses who have been on the end of a phone line during office hours.
Secondly, access to short breaks and respite care is a dreadful problem at the moment. We are not talking about parents having a nice weekend away but about them getting perhaps two nights a month when they are not on 24-hour duty looking after their children, getting up six, eight or 10 times a night when alarms go off, tubes get caught up or there are other issues. This is critical. In the case of Nascot Lawn, one set of parents decided they could not manage without that care, and as a result that child is now has full-time support from the NHS, costing considerably more than the respite care that was available in the past. This sort of scandal needs to be addressed, and it comes squarely back to CCGs and funding issues.
These children also need age-appropriate palliative care and a smooth transition into adult services. We talk about this all the time on general health issues, but for these children, many of whom may not reach adulthood for long, there is an enormous difference in service. They also require level 4 consultant support. My noble friend Lady Finlay talked about the importance of having the right specialist support. These children’s conditions are often so complex that they need fast access to that support, and at the moment, it is often not there.
Finally, just as much as adults, these children and their families need access to advanced care planning, which brings me full circle, back to my comment at the start. I look forward to hearing from the noble Baroness why that has been removed. My concern is that having something like that only in the code of practice is not good enough. Even statutory guidance is slightly dicey. It probably ought to be in the Bill. Children and adults in their final days of life should not be victims of poor management decisions by financiers and of lack of communication. The Bill comes at a very appropriate time: the conditions many people are facing are dire. Patients and their families cannot be faced with misunderstanding and having to fight their way through a maze of extraordinary decisions about what is social care and what is palliative care and whether it is provided by Marie Curie or a helper coming to the home. The Bill maps out a way forward. The Welsh example is excellent and needs to be followed. Even with the reduction in cash, the excellence of the Welsh example lies in the fact that agencies started to work together. I have talked to families who have experienced that in Wales, and they have seen an enormous difference.