Health and Care Bill — House of Lords, 2022-01-18
Topic: Health
Sarah Virginia Brinton (Liberal Democrats, Centre to centre-left): My Lords, I thank the noble Baroness, Lady Finlay, for laying these amendments and pay tribute to her for her tireless work in the palliative care sector and in your Lordships’ House. I also thank Marie Curie, Hospice UK, Sue Ryder, Alzheimer’s Society and Together for Short Lives for their very helpful briefing Clause 16 provides integrated care boards with duties to commission hospital and other health services for those for whom they are responsible. While specific services are highlighted in the clause, there is still nothing for specialist palliative care as currently drafted. There should absolutely be a fundamental right to access palliative and end-of-life care and support services for everyone who needs them. It is vital to restate that palliative care and end-of-life care are not always the same thing Hospices, homes and special services at home help children and adults for more than just those last few days. However, far too many people already miss out on palliative care, as the noble Baroness, Lady Finlay, set out; estimates suggest that while as many as 90% of people who die may have hospice and palliative care needs, only around 50% will actually receive it. Like many others, I am afraid I know family and friends who were desperate to move to a hospice in their last few days but ended up dying in hospital. In my stepfather’s case it was because of the bureaucracy of the hospital—at the point at which they said it was possible to move him, they said it was too late If we can reduce unplanned and potentially avoidable hospital admissions, it would be considerably less distressing for the patient and their families and would also reduce pressure on our hospitals With people in the last year of their life in England accounting for some 5.5 million bed days, it is estimated that the total cost of these admissions is over £1 billion for our already pressed acute hospital trusts. I have a friend currently receiving end-of-life care who is also stuck in a hospital. The real problem is the lack of understanding of where and how the specialist services can be provided. That is vital, because otherwise people end up in hospital and cannot get out again During debate on a similar amendment in Committee in the Commons, the Minister of State for Health, Edward Argar, indicated that the Government’s view is that everything is covered by aftercare. As the noble Baroness, Lady Finlay, said, this is not aftercare. If you have ever seen the brilliant work of palliative care specialists, you will understand that it is real care at a vital time in people’s lives I mentioned Together for Short Lives in opening. I have a particular interest in children’s palliative and end-of-life care. One of the things that worries me most at the moment is that people often do not understand that respite care for families looking after young children with very serious illnesses and disabilities has been a vital way of ensuring that they can have some sort of break. They often work 18, 19, 20 hours a day, sometimes with help at home but often, during the two years of the pandemic, with no help at all Take the example of my local children’s respite centre, Nascot Lawn. The parents took the CCG to the High Court twice and won, but it closed down. It was not the first. Part of the problem we have with our hospices and other forms of provision is that they rely utterly on public fundraising. The last two years have been a particular problem. For children’s respite and palliative care, it is an absolute tragedy—far too many units are closing down around the country In addition, despite a version of the language used in Clause 16, on aftercare, having been in place since the 2012 Act, many CCGs do not currently commission sufficient specialist palliative care. Worse, in the case of Nascot Lawn, the entire onus was put on the local authority because, it was said, it was about personal care. One of my concerns is a muddle between personal care and aftercare, when all these children required specialist nursing It is vital that the funding element is looked at. The noble Baroness, Lady Finlay, is right that the NHS always proudly boasted that it was there for people from the cradle to the grave. Sadly, at the moment this is not true. It is the hidden gem of our public health system and we must find a mechanism to make it not hidden but apparent and something that everyone who wants and needs it can rely on in the future.