Why hasn’t the Welsh Government Listened to the General Medical Council?

Why hasn’t the Welsh Government Listened to the General Medical Council?

Current consultation on ‘CME’ databases demonstrates that the WG has ignored important responses to its previous consultation

What’s been said?

Currently the Welsh Government [WG] is conducting a consultation on databases of “Children Missing Education.” The proposals would require health professionals, including doctors and dentists, to share information about every child for whom they have records. Previously the WG consulted along these lines with the objective of creating LA databases of every child in Wales. While the objectives have since been amended, if implemented they will still require GPs, dentists, hospitals and other medical services to share details about every child in Wales. This data will be then set alongside school registers to identify children who are not enrolled in a school.

The initial consultation took place between January and May 2020, with the consultation period being extended due to Covid 19 lockdowns. According to the WG around one hundred and fifty responses were received. However, the distraction of lockdowns and the closure of schools delayed the publication of any type of response for some time. Eventually, in February 2021 a six hundred and forty-two page document was linked from the consultation page, containing copies of the majority of the responses received. A introductory comment explained, “the Covid-19 pandemic has had an unprecedented impact on resources,” and therefore no summary report could be published as expected.

This is an invaluable document in that it provided home educators an opportunity to discover how others had responded to the proposals. It is no longer listed on the WG’s website, having been replaced in October 2021 by a less informative twenty-eight page summary; however the link to it remains active.

This article considers just one of the responses which was originally published in full. It’s an important one because it came from the General Medical Council. They had a real interest in the proposals because their members would be required to share patient data with the LAs. We have extracted the GMC’s response from the original document for readers’ convenience. We encourage you to read it because the GMC made a number of important comments at the time which are still relevant to the present consultation.

They explain from the start:

“The overarching statutory objective of the General Medical Council (GMC) is to protect patients and the public.”

Exactly! They expand on this later:

“We support the important goal of ensuring that all children and young people are receiving a suitable education. It is also important to consider this alongside the rights children, young people, their parents and indeed all patients, have for their personal information to be kept confidential.”

The GMC were clear that the WG needs to consider the safeguarding of a child’s personal confidential data, alongside seeking to assess if they are in receipt of suitable education. The rights of patients to have their personal data kept confidential, no matter what their age, should not be set aside as and when the State deems it expedient to do so. Here is a prestigious professional body which made clear to the Government that its recommendations, if implemented, would compromise their role as doctors. The present consultation suggests that the GMC’s concerns have been ignored.

Why does it matter?

The GMC’s full response highlights several other concerns they had with the WG proposals. For instance:

“We are concerned that the proposed approach to the disclosure of personal information in the draft regulations is inconsistent with our guidance, doesn’t allow room for professional judgment, and appears inconsistent with the common law duty of confidentiality.”

Leaving room for professional judgement is important, because no medical staff should be forced to pass on confidential information about their patients unless the State can demonstrate that there is an overriding reason for them to do so. The revised proposals, just like the previous ones, do not allow space for any professional judgement. If implemented, the WG’s plans will change the fundamentals of the relationship between doctors and their patients, as well as the one between the State and every medical professional.

Further, in 2020 the GMC contradicted the Government’s argument that ‘personal data’ is not ‘medical information,’ stating:

“Most importantly, the draft regulations draw a distinction between personal and medical information. In our understanding, all patient information attracts the common law duty of confidentiality. We don’t set different standards for protecting clinical or medical information and other personal information, recognising the sensitivity of all information that is shared between a patient and doctor.”

The GMC did not consider it ethical to distinguish between personal and medical data. All the data they hold on patients is, in their view, sensitive, having been shared in confidence with the doctor. Clearly, by not heeding this conviction, the WG is in real danger of breaking the social contract it has with its citizens.

The GMC raised the matter of professional judgement for a second time:

“The proposed regulations set out a blanket approach to information sharing which we believe would restrict the ability of doctors to use their professional judgment to decide whether sharing certain information would be in the best interests of the child or young person. The use of individual judgment is particularly important in the context of children and young people.”

Notice that they were very direct here, “The use of individual judgement is particularly important in the context of children and young people.” The WG has retained a “herd mentality” in its revised proposal. It seems they are seeking to corral every child under its oversight by demanding data on every child! It really doesn’t matter that they’re going to discard some of it. The track record of States protecting its citizens’ data is that they frequently lose it, or send it to the wrong people! Promises to erase the majority of it will fail to safeguard the personal data being harvested. Medical practitioners must be trusted to retain control of the data they hold and to use their professional judgement to share it when, and only when, they believe it is in their patients’ best interests.

One proposal from the GMC might not be considered helpful by HE families, yet it makes an important connection:

“As an alternative to the proposed regulations, the Welsh Government could consider pursuing the goal to ensure all children are receiving an appropriate education within existing child safeguarding arrangements, which preserve room for voluntary cooperation and professional judgment.”

We might say the WG has already brought HE children well and truly into its child safeguarding arrangements. That is not the case. The problem for the State should they seek to do this is that there are very high thresholds for intervention under safeguarding legislation. Should the WG decide to properly apply safeguarding criteria, then it would have to work within the criteria established where the welfare of a child is a genuine concern. Doing this would make it far more difficult for them to intervene for almost any other reason.

Just like the English Department for Education, the WG is using a vague and broad definition of ‘safeguarding.’ However, in legislation there are three distinct levels of ‘safeguarding.’ For the State to intervene on welfare grounds without a young person’s or their parent’s consent requires a very high threshold of concern to be met before a court will permit them to do so.

No UK Government can enter a family home at will, demanding free access because a parent could possibly hurt their children. They must first have evidence which will satisfy the court that all safeguarding thresholds have been met. It appears that is too much to ask of Welsh LAs, so the Department is using the vaguest possible definition of ‘safeguarding’ in order to circumnavigate legal safeguards.

Probably the most serious warning issued by the GMC is found towards the end of their submission;

“Requiring doctors to share information about children and young people and their parents could cause some to disengage with health services, affecting not only their health but also potentially the health of their local communities.”

This has not been taken into account by the WG. Should the GMC respond to the current consultation, no doubt they will restate this concern more firmly. They could not have been clearer. Requiring medical professionals to share information about their patients will result in some families disengaging with health services completely. The GMC see this not only as a threat to the health of members of such families, but also as a danger to the health of local communities.

In this light the WGs’ revised proposals for these databases, populated through medical records, do not actually appear to be about safeguarding children. They have already been told that such plans will put children at risk, and it won’t be confined to those families who withdraw from health services. The health of every child in every community, whether they are home educated or attend school, will be put at risk by these proposals.

It seems however that the WG didn’t think it expedient back in 2020 to engage with the advice they were given by a statutory body whose responsibilities include to “investigate where there are concerns that patient safety, or the public’s confidence in doctors, may be at risk, and take action if needed.”

What can I do?

Read what the GMC said and include some of the comments into your response to this consultation. You could so by referring to them or by quoting their wording exactly.

The consultation closes on 25 April, leaving about three weeks to respond at the time this Byte was published. Clearly, it is important that as many people as possible respond. See our Welsh Consultation page for details and helpful links.

You could have a look at some of the other submissions in the large document for inspiration – though the whole thing makes a very long read! It contains responses from organisations which take the view that changes are needed and no doubt the WG will receive similar ones this time around, so pushing back against such arguments will hopefully register the counter-arguments with the Department, even though they are seeking to bring this in regardless.

Probably one of the most helpful things you could do is to talk about these proposals and the consultation with non-HE family and friends. Try to help them appreciate how this would affect them and their children and grandchildren. It will be helpful if non-home educating people also make known their opposition to their family’s data being shared without consent. As this is a data protection and civil liberties issue, then widespread concern from outside HE communities will hopefully have a significant impact on the politicians.

These proposals are not relevant only to residents of Wales. The same objectives are being pursued through different means in other parts of the UK by all the main political parties. Parents everywhere therefore, however they choose for their children to be educated, need to understand the implications of medical staff being required by the State to share with LAs the confidential data they hold.

Please find the time to submit a response. Encourage others to do the same, and to make clear that neither they nor their children agree to their data being shared by medical professionals without their consent.

The WG has to realise that it is breaking its commitment to treat citizens with respect if it presses ahead with these proposals.