(2 years, 5 months ago)
Lords ChamberMy Lords, my noble friend has returned with his amendment on the need for an expert-led review on the 40 year-old Vaccine Damage Payments Act, and I am pleased that the meeting he sought with the Ministers has taken place. The amendment is a timely reminder for all of us that while the vaccination programme against Covid has been hugely successful, for a small group of people suffering very serious adverse effects and deteriorating health as a result of having the vaccination, the experience has been devastating, as the noble Baroness, Lady Brinton, underlined. The current legislation dealing with compensation arrangements is not fit for purpose: in the words of my noble friend, it offers too little, too late and to too few people. I hope the Minister acknowledges the need to meet and engage with the families of those affected, and that he looks urgently at the ways in which claims under the current system can be speeded up, and he also accepts the need for the review of the scheme and the next steps that have to be taken on this.
My noble friend has also added his name to Amendment 180 from the noble Baroness, Lady Cumberlege, on her unrelenting campaign for separate compensation schemes to meet the cost of care and support for the victims highlighted in her First Do No Harm report. Once again, we have heard convincing and forceful contributions from the noble Baronesses, Lady Cumberlege and Lady Brinton, which we on these Benches strongly support, calling for an independent redress agency for the three patient groups covered by the First Do No Harm report. The Government’s positive response to another key aspect of the First Do No Harm report, to improve patient safety for the future, including establishing the patient safety commissioner, is a welcome and necessary development. But the redress agency needs to be there to provide care and support for the thousands of women who suffered, and whose needs will not be met by the healthcare system, social care support or social security benefits support.
I hope the Minister has considered the matter carefully since Committee, and will report positively to the House on the ongoing discussions and progress which will ensure the strongest recompense possible for the people we are concerned about.
My Lords, I will turn first, if I may, to the amendment in the name of the noble Lord, Lord Hunt of Kings Heath, on the Vaccine Damage Payment Scheme, and start by thanking him for his campaigning on this issue, and for the informative debates we have had today and in Committee.
As we discussed in Committee, since the NHS Business Services Authority took over responsibility for the Vaccine Damage Payment Scheme from the Department for Work and Pensions in November 2021, we have started to find ways to improve the operation of the scheme. The most important thing the NHS Business Services Authority is looking do to is to improve the claimant journey on the scheme, and that means making engagements with claimants more personalised, as well as giving claimants access to more general support. The crucial part of this drive is to reduce response times, which the authority knows has been a cause of dissatisfaction, particularly during Covid; in other words, the whole process is being modernised.
The NHS Business Services Authority has done its best to hit the ground running. Since taking over in November, it has already contacted all applicants to update them on their cases and it has also allocated additional resource to the operation of the scheme. I can assure the noble Lord that the department will further engage with the NHS Business Services Authority to ensure that these service improvements, greater digitisation in particular, really do make headway. There is already regular dialogue on this.
With all this enhanced activity happening, I do not think this is right time to establish an independent review into the VDPS. As the noble Lord will know, reviews take significant time and they carry substantial costs to the organisation, not just financial but in terms of leadership focus and energy. Instead, we think it is a better use of resources to focus on making the changes that we know need to happen; that is, to improve the claimant’s journey, and to modernise the process for claimants, as well as scaling up the capacity of the VDPS. We will keep the progress on these under regular scrutiny, and I am sure we will report regularly to this House as we do so.
I will address the noble Lord’s three key questions. First, I should be happy to facilitate a meeting with representatives of the families, and my honourable friend Maria Caulfield, who is the Minister with direct responsibility for the scheme, will be pleased to see them. Secondly, as I have already indicated, reducing response times is one of the NHS Business Services Authority’s key objectives. Thirdly, the noble Lord asked whether the Government would undertake a review of the scheme. I simply remind the noble Lord that the scheme has been revised many times since its inception, which shows that it is reviewed regularly as a matter of course, but perhaps it is worth my making the point that the VDPS is not a compensation scheme; nor is it designed to cover all expenses associated with severe disablement, which are catered for from the public purse in other ways. I hope that is helpful to the noble Lord, and that on the basis of those assurances he will feel able to withdraw his amendment.
Before I address the detail of Amendment 180, I would like to again put on record my thanks to my noble friend Lady Cumberlege for her continued commitment to the issues she has so powerfully spoken about, and the diligence and dedication of the IMMDS team, and the brave testimonies of those who contributed to the IMMDS review. As my noble friend knows, the Government have accepted the majority of the report’s nine strategic recommendations and 50 actions for improvement, and are taking forward work to improve patient safety. This includes establishing specialist mesh removal centres, the ninth of which opens in Bristol this month, and work to improve the care pathways for children and families affected by medicines during pregnancy.
We remain committed to delivering improvements in patient safety across the board. We are focusing government funds on initiatives that directly improve future safety. For this reason, the Government have already published their decision that redress schemes will not be established for people affected by hormone pregnancy tests, sodium valproate or pelvic mesh. I realise that was a disappointing decision for my noble friend, and I am always very sorry to disappoint her, but, for the reasons I have given, I ask her not to move Amendment 180 when it is reached.
(2 years, 6 months ago)
Lords ChamberMy Lords, I thank the noble Baroness, Lady Finlay, for this amendment and other noble Lords who have contributed to this highly emotional and compelling debate about the welfare, care and medical treatment of critically ill children. I also thank Emma Hardy MP for ensuring that this key issue was debated in the course of the Bill’s passage through the Commons and the work that she, other MPs and noble Lords have undertaken with parents and medical staff to help build and develop the framework that is set out in the amendment where care and treatment are disputed: Charlie’s law, in memory of Charlie Gard.
The amendment seeks to mitigate conflicts at the earliest stages, provide advice and support, and improve early access to independent mediation services to prevent the traumatic and bitter legal disputes that we have all seen all too often. Noble Lords have highlighted these, as well as the benefits that the step-by-step processes set out in the amendment would provide for parents and doctors, which are of course central to the consideration of the child’s welfare and best interests. In particular, providing families with access to legal aid if court action takes place would, as the noble Baroness, Lady Finlay, pointed out, ensure that they do not have to rely on raising funds themselves, or on the financial support of outside interests.
Today’s debate has been powerful but has also demonstrated the difficulties with trying to address and resolve such deeply complex issues within the context of an already overloaded and skeletal Bill. Like other noble Lords, I have received the excellent briefing from the Together for Short Lives charity, which does such remarkable work on children’s palliative care to support and empower families caring for terminally ill children. While supportive of much of the amendment, the charity has what it terms “significant reservations” about proposed new subsection (4) on the issue of amending the court’s powers in relation to parents pursuing proposals for disease-modifying treatment for their child after the final court decision.
So, while there is obviously considerable support for the measures set out in the amendment, as we have heard today, the reservations about this and other provisions in the amendment, from Together for Brief Lives and other organisations, emphasise the need for the continued dialogue and discussion that we are not able to have today but which noble Lords have made clear is needed. This has been an excellent debate and I hope the Minister will be able to find supportive ways of taking this vital issue forward.
My Lords, the noble Baroness, Lady Finlay, has brought a vital and sensitive debate before the Committee, for which I for one am very grateful. At the heart of each of these difficult cases is, as she said, the well-being of a child, and that principle has to remain uppermost in everyone’s mind. While the views of parents and guardians are routinely considered in everyday care, occasionally difficult disputes will arise. When they do, we should carefully consider how best to protect the interests of the child. I will start by saying that I fully agree with the noble Baroness that any failure to listen to the concerns of parents or a guardian would be bad practice.
However, I have a concern about the practical impact of this amendment. In cases of the care of children with life-limiting illnesses, the amendment would place the views of parents and guardians above those of clinicians and—let us be clear—the courts, which have a statutory obligation to act in the best interests of the child. Establishing a default presumption in favour of the parents’ views would fundamentally change the current balance. It would move away from the impartial assessment of the individual child’s best interests being paramount based on all the evidence in each specific case.
I understand the view that parents know what is best for their child and their wishes should be paramount. Sadly, though, I am afraid that I cannot fully agree with the proposition advanced in the amendment. It is sometimes the case that desperate parents in these tremendously difficult circumstances are subject to the flattering voice of hope and, as a result, are not acting in a way that is necessarily in the best interests of their child.
To protect the child, it is right that when every effort at resolution has been unsuccessful there is recourse to a judicial process that can impartially assess all the evidence as to what treatment is best for the child. I also fear that it would be difficult for a clinician to determine, in the wording of the amendment, “anyone else” who has an interest in a child’s care. In considering the provisions of the amendment, I note that a child’s medical data can already be provided to parents following a subject access request, so we do not feel that legislation here is necessary. I absolutely agree that specialist palliative care teams should be part of the multidisciplinary team for any child or adult with a complex life-limiting illness; their involvement is an integral part of good practice, and I would expect referrals in such situations. However, I do not agree that it is necessary to put that into law.
Let me say something about mediation. I listened with care to my noble friend Lord Balfe. We know that mediation can and often does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way. Unfortunately, that does not provide a solution in every dispute. The Government are supportive of the many excellent mediation schemes already available, including through charities and the private sector. We agree that parents and clinicians should be able to access such schemes where they wish to do so. However, we are not convinced that legislation is the answer to these thankfully rare but nevertheless tragic cases.
The current lack of statutory prescription means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. There is currently a wide range of work and research into avoiding such protracted disputes and improving the approach to managing conflicts, with the aim of promoting good, collaborative relationships between parents and healthcare professionals to seek resolution without lengthy and costly legal battles. Furthermore, on those rare occasions where disputes are heard before a court, the amendment seeks to extend legal aid. Legal aid is already available for best interests cases, albeit subject to a means and merits test.
I understand the strong views on the amendment across the Committee. I understand that these issues are ethically charged and I take them seriously. However, I also believe that the current approach properly balances the views of parents and guardians with those of clinicians and, above all, with the paramount importance of the best interests of the child in question. The sensitivities around this subject are acute but I hope that what I have said has clarified why I do not feel able to accept what I know is a well-intentioned amendment.
(2 years, 7 months ago)
Lords ChamberMy Lords, I strongly support my noble friend Lord Hunt and other noble Lords in their quest in this suite of amendments to underline the important and crucial role played by Healthwatch, particularly at local level, and to ensure that the new NHS structures and processes in the Bill fully recognise this.
Under the 2012 Bill, the noble Lord and others who have put their names to the amendment and who have spoken in today’s debate were all strong advocates of Healthwatch, and clearly remain so today. The concerns deeply expressed then of the Government’s decision to make national Healthwatch a sub-committee of the CQC, and not the independent organisation that it needed to be, have again come to the fore. Amendment 220 would add a new clause after Clause 80, seeking to establish Healthwatch England as a body corporate that provides an annual report of its activities to Parliament; it has the full support of these Benches. As the noble Lord, Lord Patel, has strongly emphasised, failing to provide for the independence of Healthwatch was a fundamental error that needs to be put right. He set out a particularly strong case, as have other noble Lords this time around.
Amendment 42 to Schedule 2 seeks to ensure that Healthwatch is a non-voting member of the ICB, so that there can be a genuine championing of patients’ voices and views, which many noble Lords have spoken so strongly about today. These are views fed back from evidence and surveys conducted by both national and local Healthwatch organisations. At the very least, it is crucial to seek to ensure—as set out in Amendment 103 to Clause 20—that the ICB is obliged to fully consider Healthwatch reports and that that body leads any local consultations proposed in the ICB forward plans.
Amendment 149 to Clause 21, seeking to ensure that ICPs have a Healthwatch nominee in membership, is also important, given the local Healthwatch links to both the NHS and local authority bodies, patients and clients.
Key questions on how Healthwatch, both at national and system level, is to be funded were raised by my noble friends Lord Hunt and Lord Harris, particularly about the whole process of allocating funds. This is important in view of the increased role of Healthwatch in the additional 42 ICSs. I look forward to the Minister’s response.
Finally, I also endorse noble Lords’ comments on the excellence of the reports produced by national and local Healthwatch organisations. Their guidance on access to social care, mentioned by several noble Lords, and comments on the detailed proposals later in the Bill on the care cap and the recent White Paper, are clear and accessible to service users, and closely examine the impact for them, and for the thousands of people currently waiting for assessment and access to key services. However, those are issues for another day. I hope that the Minister has listened to the debate.
My Lords, these amendments deal, in their several ways, with the role of Healthwatch both locally and nationally. I begin with Amendment 42, in the names of the noble Lords, Lord Hunt of Kings Heath and Lord Patel, and the noble Baroness, Lady Thornton. This amendment would require ICBs to make provision in their constitutions for a non-voting member to be appointed from local Healthwatch branches.
I lay great importance, as do other noble Lords, on Healthwatch’s work on patient advocacy. However, as I said in relation to other amendments on the membership of ICBs—I know this is turning into something of a mantra—we want to avoid the Bill’s provisions being too prescriptive. It is essential that we provide local leaders the flexibility to design the board in a way that best suits each area’s unique needs. Even a non-voting member risks making the boards less nimble, undermining their ability to make important decisions efficiently. As I am sure the Committee is already aware, the ICB can appoint more members, including a Healthwatch representative, if it wishes, and I am sure many of them will. What is key is that local boards should be able to decide for themselves to appoint individuals with the necessary expertise to address local needs, and we want to allow them as much scope as possible to do so by not prescribing who all those members should be.
That said, I recognise that the growing complexity of health and care demands that we listen to the voice of patients, carers and the public. We want to ensure that they are heard throughout the system. I contend that there is adequate provision in the Bill to ensure that patients and the public are appropriately consulted and involved in decisions made by the ICB. I draw noble Lords’ attention to new Section 14Z36, regarding the duty to promote the involvement of each patient, and new Section 14Z44, regarding public involvement and consultation by ICBs.
I listened carefully to the noble Lord, Lord Harris of Haringey, as I always do, about the particular need for adequate and appropriate funding of local Healthwatch. If I may, I shall take away the points he made on that issue and others and write to him about them. We would expect Healthwatch to be closely involved with ICBs in carrying out their engagement and involvement duties. On what do we base that expectation? Many systems already have some system-level arrangements in place with Healthwatch. Indeed, NHS England has published guidance, which would apply to ICBs, on working with people and communities that encourages working closely with Healthwatch. Therefore, given that ICBs will already be required to engage patients closely in their decision-making process, and that we expect Healthwatch will be closely involved in that, we consider it unnecessary to require in legislation a member drawn from Healthwatch.
Amendment 103 would alter ICBs’ duties in relation to public involvement to require them to make adequate arrangements for the receipt and consideration of any relevant Healthwatch reports. As I said, the existing ICBs’ duties in relation to patient involvement are already comprehensive, and the amendment could unintentionally limit ICBs’ ability to form relationships with Healthwatch and other organisations appropriate for their area. As was the case for CCGs, ICBs will be required to make arrangements to involve patients in the planning of commissioning arrangements in areas that may impact the manner in which services are delivered, or the range of services available. This will ensure that patients receive appropriate representation where decisions are being made that could affect them.
I previously mentioned that NHS England, in its guidance to ICBs, has encouraged close working with Healthwatch. This guidance comes with the acknowledgement that what an appropriate relationship with Healthwatch looks like will vary from system to system. For this reason, we are seeking to establish comprehensive duties and requirements in the legislation while leaving the specifics of local relationships with organisations such as Healthwatch for ICBs to determine for themselves.