(2 days ago)
Lords ChamberMy Lords, I thank my noble friend Lady Finlay for making the strong economic case for specialist palliative care and for these thoughtful amendments. I have added my name to several of them.
On Amendment 78, ICBs already have responsibility for commissioning palliative care. That came about following amendments to the 2022 health Act, which my noble friend Lady Finlay introduced, but there is insufficient accountability for whether and how they are meeting the needs of their local populations. The House of Commons Health and Social Care Committee’s recent inquiry found no clear standards or reporting requirements for ICBs for the provision of palliative and end-of-life care.
Geographic inequality is striking. In 2023, the proportion of people dying in hospital varied from 36% to 52% between ICB areas, and the proportion dying at home varied from 26% to 33%. Why are there so many differences between different areas? We cannot improve what we do not properly measure, and palliative care at the end of life is an essential component of healthcare, not an optional extra. This amendment would require annual performance assessments regarding the standard of palliative and end-of-life care provided.
Amendment 26 would require urgent investment in palliative care through a transformational fund. The Health and Social Care Committee considered the specialist palliative care workforce to be in a critical situation. It described 78 consultant vacancies and around 40% of hospitals not providing a seven-day face-to-face specialist palliative care service. More funding would support the Government’s intended move towards more care in the community and help to avoid needless prolonged hospital admissions.
Amendment 242 would ensure that NHS and hospice services can work together effectively, with timely information sharing and the access to beds, medicines, equipment and appropriately trained staff that patients need and deserve. At the moment, it is so fragmented; it is very hard for people trying to co-ordinate and manage their own end-of-life care at home, as I know only too well after my husband died last year.
The scale of the voluntary sector’s contribution is considerable. In 2024-25, hospices across the UK provided palliative and end-of-life care to 310,000 people, alongside direct support to 89,000 family members, friends and carers. But the financial pressures they face are significant, and of course they rely heavily on charitable donations and fundraising. However, voluntary sector providers are not peripheral to our health and care system; they are essential partners.
The Public Accounts Committee in the House of Commons has estimated that 300 hospice in-patient beds have been lost due to lack of funding. It would be very timely to agree all these amendments and I give my wholehearted support to them.
My Lords, I commend all the amendments in this group. As the noble Baroness, Lady Finlay, said when introducing it so powerfully, I attach my name to the noble Baroness’s Amendment 26, which would provide for a transformational fund for improvements in access to support service redesign by scaling proven models of care, supporting also the planned shift from hospital care to community care.
As the noble Baroness, Lady Coffey, alluded to, we have to consider this group of amendments in the context of the Terminally Ill Adults (End of Life) Bill, generally known as the assisted dying Bill. I spoke at its Second Reading in your Lordships’ House and my noble friend Lady Jones covered Committee. It is worth noting that, the second time the Bill was presented in the other place, Andy Burnham said, in a very influential intervention, that before assisted dying is considered in England and Wales, the funding of palliative care should be fixed. That is what the amendments in this group, in their various ways, seek to achieve. The Government often say they will do this when legislative time allows. We have the opportunity before us at this moment.
We have covered many of the points already, but it is worth noting that, by 20 October, more than 100,000 people had signed a petition, which was delivered to No. 10, calling for sustainable hospice funding to be made a national priority. At that event, the Shakespeare Hospice chief executive said:
“Our ask is simple: a fair and sustainable long-term funding model that ensures everyone can access high-quality hospice care, regardless of where they live”.
The fact is, of course, that, in many ways, hospice care and provision is not only a postcode lottery but is going backwards in many parts of the country. On average, about 270,000 people each year receive hospice care, but only 40% of the funding comes from government sources: 60% of the funding comes from people—very often pensioners—standing at train stations rattling buckets. We have a reliance on charity shops, but that funding model is in significant difficulty, in part because of fast fashion and other changes. We have a cost of living crisis that means many people who may have made contributions before are simply not in a position to make contributions now.
I have spoken in your Lordships’ House previously about the very sad closure of the Richard House hospice in east London in 2025. I note as one further example the Queenscourt Hospice in Southport, which has been going for 35 years. In the middle of this year, it cut its in-patient provision by 50%, decreasing bed capacity from 10 to five. It also reduced out-patient services, therapies and hospice-at-home clinical provision. Associated with that was the loss of 20 full-time equivalent medical posts.
I note also that the Royal College of Nursing, at its congress in May, supported overwhelmingly a resolution that the RCN advocates for decent coverage of hospice care. That should not be necessary. We have before us a Bill that gives the possibility for the Government to put this into a legislative statutory framework to support proper palliative care, which the Prime Minister has said that he wants to do.
(1 year, 7 months ago)
Lords ChamberMy Lords, it is a pleasure to follow that short but extremely powerful contribution, informed by so much professional experience. I think that the whole House would like me to acknowledge that.
My Amendment 63 is about the powers of tribunals to determine challenges against treatment decisions. In many ways the argument for this follows on from the noble Baroness, Lady Watkins, just said. Things go wrong. However much we are trying through this Bill to improve the treatment of people with serious mental illness, I am afraid that we all acknowledge that things will continue to go wrong. Again, I have tabled this amendment at the request of Mind, which feels that there should be something like this. The amendment would not create any automatic right. It says that the Secretary of State may, by regulations, make provision about appeals. It would set up the framework to make this possible.
We had extensive discussion on this in Committee. I will not rehash all of that. We are trying to create mechanisms of common justice, ways forward and possibilities. We all acknowledge that so much of what is in this Bill will not be delivered within a month, a year or even two years, but it is trying to create the frame to make that possible. This is a very strong argument for that.
The noble Baroness, Lady Watkins, powerfully made the case for Amendment 14. I added my name to it as it is so important that it should have a full slate.
I will briefly address Amendment 13, in the names of the noble Earl, Lord Howe, and the noble Lord, Lord Kamall, to which I have also added my name. All through Committee, it kept occurring to me, though I never found the place to reflect it, that the word “trauma” does not appear once in the Bill. I was really surprised about that. I thought about several debates that I have had, going back to the Domestic Abuse Act and the Schools Bill under the previous Government that never became an Act. There was a lot of discussion about the need for trauma-informed environments and trauma-informed care. There is a general sense of intention from your Lordships’ House that this is one of the things that we are thinking about, but there is nothing about it in the Bill.
Therefore, this amendment would add the words
“seeks to minimise the patient’s distress”
and promote their
“recovery from any childhood trauma”.
That is possibly a bit narrow. The Minister might take away and think about the fact that nothing in the Bill talks about the fact that so many of the patients we are talking about will have been through hideous traumas: childhood abuse, domestic abuse, war situations, torture—all kinds of circumstances. This is a chance to ensure that we put in the Bill, perhaps even more broadly than in this amendment, an awareness of the need to think about trauma. I think we are all thinking this, but let us ensure that it is written down in law.
My Lords, I agree with the noble Baroness’s points about trauma.
I will speak to Amendment 53. I credit my parliamentary scholar with writing it. His experience as a practicing psychiatrist confirms my experience of many years ago, before I retired as a psychiatrist. The code of practice is too often ignored or inconsistently applied, leaving vulnerable patients without essential safeguards. A thematic review of independently chaired reviews into the use of long-term segregation, which I oversaw for the previous Government, found that around a third of providers were not reviewing long-term segregation in line with the current code’s requirements. Unfortunately, this problem extends beyond LTS and is evident across other settings, including acute care for individuals with personality disorders.
There is often a disconnect between what we assume guidance and policy achieve and the reality of front-line psychiatry. As the strategist Helmuth von Moltke said, no plan survives first contact with the enemy. In this context, no guidance survives contact with the complexities and pressures of day-to-day clinical care. That is precisely why guidance alone is not enough. Despite the requirement to have regard to the code, breaches frequently go unchallenged. Again and again, we see that statutory law, not just guidance, is needed to ensure compliance and protect patients’ rights. Also, detained patients are not in a position to take a provider to court if their treatment is not in line with the code.
That is why this amendment seeks to introduce a statutory accountability mechanism for non-compliance with the code of practice. It would establish enforceable obligations on providers, ensuring that failure to adhere to the code carried real consequences, that compliance is not optional, and that hospitals would be held accountable when failure to follow the code resulted in harm or breaches of a patient’s rights.
Legislation typically drives funding priorities. We have seen time and again that, where the law mandates action, resources follow. Section 2 of the Mental Health Act limits detention to 28 days. If this timeframe was merely guidance, would it be as strictly adhered to? Without a statutory requirement, would the same level of resource be dedicated to mental health tribunals? When the maximum detention period under Section 136 was reduced from 72 hours to 24 hours under the Policing and Crime Act 2017, we saw an immediate and dramatic change in practice across the country. If this had been guidance alone, I doubt we would have seen such swift and universal compliance.
Prior to the Mental Health Act 1983, patients could be detained indefinitely, with minimal safeguards and little external oversight. The introduction of statutory time limits and legal protections under the 1983 Act marked a turning point, contributing to the decline of long-term institutional care and supporting, importantly, the rise of community-based mental health services and rights-based community care. Without statutory backing, there is no guarantee that revisions to the code of practice will be implemented or enforced.
(4 years, 9 months ago)
Lords ChamberMy Lords, I have some brief points to add in support of my noble friend Lord Low’s Amendment 56A, which the noble Lord set out so clearly, and also in support of the amendments tabled by the noble Lord, Lord Crisp. It is very clear to me that primary eyecare has lagged well behind other areas of primary care in terms of any commissioned schemes for children and young people who are not in special schools and for adults with learning disabilities.
My experience with my son sound very similar to those described so well by the noble Baroness, Lady Uddin. The similarities are quite extraordinary, and my heart goes out to her. This week my son went to see the optician. He is visually impaired; he has a learning disability and autism. Fortunately for him, the optician responded well to the request for some reasonable adjustments to be made—which are required by law, but perhaps not well understood in local high street opticians.
Some years ago I did some research with SeeAbility, and together we created a visual, word-free resource. I declare an interest here, because this was with the charity I founded and chair: Books Beyond Words. We created a story called Looking After My Eyes and I read this with my son before he went to his optician’s appointment yesterday. It helped him and it helped the optician. But we need targeted improvements in optical care for everybody with a learning disability across the country. For this reason, I thoroughly support my noble friend’s amendment.
My Lords, in the wake of such a hugely powerful group of contributions, mine is very much a supporting role and I will be brief. I can only endorse the contributions to the amendment put by the noble Lord, Lord Low, and what we have heard about why it is so urgent. I will speak to Amendments 112 and 218, to which I have attached my name.
I attached my name to Amendment 112 because, as I was looking through the amendments, it struck me as such a crucial one. It was one that, even at this stage, it was really important to have four signatures on to show broad cross-party support. I am afraid I did not go for Amendment 113 and the rest of the list as well, on the grounds that I thought my name was there enough already, but I think the rest are—if not technically, certainly practically—consequential on Amendment 112.
After I had done that, I received a briefing from the Royal College of General Practitioners, writing also on behalf of the Royal Pharmaceutical Society and the Association of Optometrists. I will quote one sentence. The college says:
“We think this is a classic example of where secondary care is at the centre of decision-making, while GPs and primary care are ‘consulted’.”
I think that reflects what the noble Lord, who has a great deal of expertise, said, and this is one amendment that is a total no-brainer.
Moving to Amendment 218, the noble Lord, Lord Hunt of Kings Heath, outlined the technical background to this and the statistics. The only thing I will add is that many think tanks, including the Health Foundation, the King’s Fund and the Nuffield Trust have produced information about how extreme the variation in availability of GP services is and how much effect that has on inequality. As the noble Lord, Lord Warner, said, if the Government have a levelling-up agenda, this also is surely essential.
The reason I was personally attracted to this amendment is that in my days as Green Party leader I travelled around the country a lot and quite often ended up meeting GPs, very often talking about public health issues. I encountered so many desperately hard-working, utterly committed people who were exhausted and felt that they could not retire or cut back their hours. They were wearing themselves to the bone because no one was coming to replace them. I felt that I needed to stand up and speak for those people.
Sometimes people think of this as something that affects rural or remote areas. However, the Norfolk Park health centre in Sheffield nearly closed last year because, after extraordinary efforts, it had been unable to find an extra partner to come in. As the noble Lord, Lord Scriven, knows, this surgery is a fairly modest bus ride from the centre of a major city. It is a purpose-built health centre and only eight years old, but it could not find a GP partner to come in. Eventually, after a great deal of public campaigning, the surgery remained open. That is a demonstration of just how broad this problem is, yet, as the noble Lord, Lord Hunt, said, there are parts of the country—broadly the wealthier parts—that have expansive GP coverage.
Something has to be done, but, like the noble Lord, Lord Hunt, I am not sure that the proposal here is exactly the right way forward. We often say that something needs to be done, but we really need to see something done here. As with so many of the amendments that we discussed this morning, the Bill we have before us is the chance to sort out an urgent problem that must be sorted out.