Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Greengross (CB)]

My Lords, I will speak to Amendments 133, 139 and 161 in my name, and to Amendments 143 and 144 in the name of the noble Baroness, Lady Finlay, to which I have added my name.

Amendments 133, 139 and 161 are intended to clarify the role that continuing healthcare—CHC—will play, along with other commissioned services. The Continuing Healthcare Alliance has raised concerns about the provision of NHS continuing healthcare. The package of care is there to support people with ongoing and substantial needs in England. Examples of conditions for which someone may qualify for CHC include Parkinson’s, motor neurone disease and dementia, but there are many others as well.

Amendments 143 and 144 would strengthen the power of NHS England to give directions to integrated care boards. They would help to ensure national consistency of CHC services, which, sadly, is not always the case at present. When the Bill was debated in the other place, the Minister, Edward Argar, responded to a similar amendment as follows:

“It is right that clinical commissioning groups, as they are currently called, are held accountable for NHS continuing healthcare within their local health and social care economy. That will also be the case with the national move to integrated care boards, where the board will discharge those duties and be accountable for NHS continuing healthcare as part of its NHS commissioning responsibilities.”—[Official Report, Commons, Health and Care Bill Committee, 28/10/21; col. 825.]


Given this earlier response, I believe that it is the intention of the Government to improve the national delivery of continuing healthcare and to ensure more consistent delivery throughout England. The intention of this group of amendments is to clarify that in the Bill, so I commend Amendments 133, 139 and 161.

[Baroness Finlay of Llandaff (CB)]

My Lords, I added my name to Amendments 133, 139 and 161, which were so ably introduced by the noble Baroness, Lady Greengross, and others. I also have Amendments 143 and 144 in my name. All the amendments aim to tackle the accountability gap: the inconsistency of provision of continuing healthcare across different parts of England.

The noble Baroness, Lady Greengross, alluded to some diseases, but this goes much wider. There are people with spinal injuries and long-term multiple sclerosis and there are people who have had strokes. They all need ongoing long-term healthcare at a high level—way above the level that can be provided by social care.

The problem is that the accountability gap exists and there is inconsistency in the quality of provision, with eligibility criteria being interpreted differently in different areas. Amendments 143 and 144 aim to strengthen the powers of NHS England in the Bill to give direction to integrated care boards, with the particular aim of closing this accountability gap. Within the existing system, NHS England is responsible for holding clinical commissioning groups accountable for their discharge of continuing healthcare and functions.

In the reformed system proposed by the Bill, NHS England will hold these boards accountable in a similar way, but I question whether it has adequate authority both in the current system and the proposed system and whether the levers available to it to act meaningfully are adequate. While the intention prior to the Lansley reforms was to give NHS England powers to intervene to create meaningful change in practice, the powers were restricted to high-level interventions where there was a failure of governance at the highest level, rather than interventions where a CCG was failing to implement good practice or to adhere to national policy.

The 2018 report by the Public Accounts Committee in the other place supported these concerns and stated:

“NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide continuing healthcare to those that are eligible.”


There are limited accountability mechanisms and there is inadequate data collection at present. These amendments seek clarification and would drive long-overdue improvements in the quality and, importantly, the consistency of the way that continuing healthcare decisions are made and the process is administered, with the aim of improving outcomes and reducing the strain of applying for continuing healthcare for people who live with complex health needs and for their loved ones, in particular their family and carers.

[Baroness Pitkeathley (Lab)]

My Lords, I very much support the noble Baroness, Lady Greengross, in her amendments. We should be clear that continuing health needs are ignored by assessors because of the issue of who will pay. I have experienced this twice with neighbours and friends. It was clear to me that both patients had complex needs, mentioned by the noble Baroness, Lady Finlay, and had undeniable continuing care needs, so I was puzzled as to why the families were working out how to fund places for their relatives. They had never been told of the possibility of continuing NHS funding. I suggested that they quote the legislation back to the assessors and of course when they did so they found that funding would be provided—and some years later it is still being provided. Without this chance encounter with me, and asking the right questions, those families would have been denied the funding that is their right.

--- Later in debate ---

[Lord Clement-Jones (LD)]

My Lords, I support the amendment in the name of the noble Lord, Lord Hunt, to which I have added my name. He is not the only one to be concerned about this part of the Bill. My noble friends Lady Brinton and Lady Harris have delivered powerful support and a demonstration of why we have to be absolutely vigilant about access to, and sharing of, personal data, as they were so successfully on the police Bill. We must not repeat those experiences.

We will talk further and more comprehensively about data later in Committee. In the meantime, Amendment 145, as the noble Lord, Lord Hunt, explained, tries to illicit from Government their intention behind these disclosure powers for ICBs in new Section 14Z61 in Clause 20 with regard to information, whether personal data is involved and what the safeguards are. New Section 14Z61 sets out the provisions whereby

“An integrated care board may disclose information obtained by it”


in the exercise of its power. As the noble Lord, Lord Hunt, said, the catch-all condition in new Section 14Z61(1)(f) under which disclosure can be made

“for the purposes of facilitating the exercise of any of the integrated board’s functions”

seems remarkably open-ended. My noble friends have also pointed out the sheer width of paragraphs (e), (g) and (h), which go even further than those originally proposed in the police Bill and raise crucial questions for the Minister to answer.

Amendment 145 aims to ensure that an ICB cannot disclose information where this is patients’ personal data. In my last intervention on the group headed by Amendment 26, I, like the noble Lord, Lord Hunt, expressed my support for the NHS’s digital transformation programme. It is clear, as the noble Lord says, that there is great potential growth in new technologies using data such as AI and machine learning. However, there is an absolute imperative to have the right safeguards in place in relation to duties and data. This is very much aligned with transparency in public information and engagement, particularly in this context. Transparency, choice and consent are crucial, as the noble Lord, Lord Hunt, says.

We have all looked forward to the Goldacre review, but I am not convinced that it will range wide enough and cover the governance arrangements needed to preserve and enhance public trust in the sharing and use of health data, but we will see. I look forward to the debate towards the end of Committee when we discuss the wider aspects of the Bill, when we will produce further illustrations of the rather cavalier way in which the Government, the department and the NHS have treated personal data. Not least of these is what has been called the attempted GP data grab of last year. In the meantime, I hope the Minister will be able to give assurances that the powers in Section 14Z61 will be very limited.

[Baroness Finlay of Llandaff (CB)]

My Lords, from the perspective of a clinician, I support this amendment very strongly. If it is not adopted, I can see it being imperative, in any doctor’s consultation, to warn the patient that their data could be accessible and to be very careful about what is recorded in the clinical record. Very often, patients come to see a doctor, possibly at a very early stage of slightly disordered thinking or because they have undertaken a potentially high-risk activity, often in the sexual domain, and are worried that they may have contracted some condition or other. If you inhibit that ability to see a doctor early, you will further drive people into whatever condition is beginning to emerge, so it will not be known about until later. That applies particularly in mental health, where early intervention might prevent a condition from escalating.

I can see that, without an amendment such as the one proposed by the noble Lord, Lord Hunt of Kings Heath, every clinical consultation will have to be conducted with extreme caution, because of potential access to data.

[Lord Bethell (Con)]

My Lords, I an enormously grateful for this debate, because this clause and related clauses are critical both to achieving the digital transformation aims of the NHS, referred to by the noble Lord, Lord Clement-Jones, and to getting the healthcare system to work better together.

I am also grateful for the humanity and testimony of several noble Lords, exemplified by the noble Baroness, Lady Finlay, who spoke movingly about the practicalities of patients going to see their doctors. I know from my own life and from my family how important it is to protect those relationships.

That is why I would like to hear a little from the Minister about what protections there are, because health data is and should be treated as a special category of data. What additional protections are there in the use of health data, including in the common law duty of confidentiality, the role of the National Data Guardian, the way the Caldicott principles will be used and the national data opt-out? What reassurances do we have that those special considerations will apply to this clause and its related components?