My Lords, first, I apologise to the House for not declaring my interest as president of the BMA at the opening of this debate, given that the BMA has briefed about problems with the Bill.
My Amendment 5 focuses on the word “best” in the term “best interests”. I have had a concern about this because of the way “best interests” is now used. I have looked back, thanks to help from the Library, at 147 pieces of legislation in which the term “best interests” has been used. If one looks at those that came after 2005, when the Mental Capacity Act was passed, it is notable that that term has been included when it concerns the best interests of children, young carers, safeguarding, protection of those who lack capacity, or with regard to organisations such as charities—but not with regard to adults, who would be considered to have capacity as individuals. The term is also used in connection with the storage of gametes and the provision of local services and pension funds, which must act out of the collective best interest of people with whom the legislation is concerned.
I have also understood—I stand to be corrected—that in legislation the most recent use of a term supersedes all preceding use of that terminology in legislation. Therefore, the Mental Capacity Act should be the Act we look to. However, here we have a specific decision to be made in the so-called best interests of an individual, who can be assumed to have capacity, about the decision over their data, and that decision is being made by another person. My concern is that we are legislating for one person, the health or adult social care commissioner or provider, to decide that inclusion of the NHS number as a consistent identifier is, or is not, in the individual’s best interest, even though the individual with capacity may, if consulted, feel very differently. My concern is because there are quite serious implications about not including the NHS individual identifier.
I turn to the principle of best interests. For years we have tried to make sure that that term was used properly in both health and social care. We had a very interesting debate earlier this week on the post-legislative scrutiny of the Mental Capacity Act. Strenuous efforts have been made to roll out empowerment of individuals to enhance capacity and not to take paternalistic decisions of one person over another. Indeed, I have been involved in trying to teach the principles of the Mental Capacity Act, and I am fearful that this wording—as in this piece of legislation—could be seen to undermine the laudable intentions of that Act in terms of empowering individuals to take decisions.
I turn to Amendment 6 and how the NHS function of the unique identifier is important. In our society, we have several different identifying numbers—national insurance numbers, bank account numbers, passport numbers and so on. The national insurance and passport numbers are held from within the province of government. Perhaps it would be more honest to state that, if you do not wish your NHS unique identifier to be available to be available to you, you have effectively signed yourself out of NHS services.
Indeed, I am grateful for a briefing that I have only just received this morning, which points out—if I have understood it correctly—that opting out of the use of the NHS identifier opts you out of systems such as “choose and book”, screening programmes and so on. So effectively you are in part removing yourself from services that are available as a public health measure, as well as services that would be available to you as a
patient. I wonder whether we should state clearly that the onus is only on you as the individual to explain why you wish such a number to be excluded, perhaps because you are a public figure and wish to use an alias—or should we begin to think about whether there should be the occasional possibility for people to have two numbers to use in different situations, rather as you can, in exceptional circumstances, hold two passports?
The NHS number makes links across the whole system of pathways of care. Indeed, it is there to reduce risk. For example, if you have two patients with a similar name who are going for surgery, the NHS number will be used as a checklist identifier to make sure that the right patient of that name is taken down for surgery. We are all aware that, when patients are in hospital and frightened and feel disempowered, they are less likely to challenge the processes that are happening to them than when they are fit and well.
Another problem concerns me. What about the person who is coerced or pressurised into withholding their NHS number because somebody is badly intentioned or abusive towards them and does not wish that abuse to be revealed? A person may appear in different parts of the healthcare system but, without that NHS identifier number, the dots cannot be joined up to protect them or to detect that there is a problem.
I seek confirmation in summing up from the Minister that I am correct in understanding that, if you decide not to use your NHS number, you are opting out of things such as screening programmes, as well as having to present your NHS number to be able to opt out of systems such as care.data, and so on. At the moment, if you opt out of care.data, you are opting out of screening programmes as well.
Another problem for the NHS is that hospital episode statistics rely on the NHS number, which is effectively how the hospital is paid. If there is no number, the only identifier that the hospital has is your name and address, which is a far greater threat to privacy in the system than is the NHS number.
With those comments, I await the Minister’s response to the questions I have posed. I emphasise again that I have real concern about how the term “best interests” is being used. I seek clear clarification in his answer so that we can have clarity on the record about how the term is used in the context of the Bill.