Liam Fox: The momentous implications of the Down Syndrome Act for the civil service

Dr Liam Fox is a former Defence and International Trade Secretary, and is MP for North Somerset.

Politics at its very best is the about delivering real change. It is one of the great privileges of elected office that we can campaign for causes that really matter to us, or deliver for those whose voices may not otherwise be heard. That is why the Down Syndrome Act is one of my proudest achievements in my 30 years as an MP.

When I was born, the life expectancy of people with Down syndrome was 13 years. By the time I was a junior doctor, it was 30. Today, it is 58, meaning this will be the first generation of people with Down syndrome who will outlive their parents.

As a result, there was an urgent need to put provisions in place to deal with long-term care. If we didn’t, predictable human tragedies – such as the placing of people with Down syndrome into inappropriate care facilities – would have occurred. There is now time to make the appropriate arrangements ensuring dignity and independence for those with Down syndrome and relieving the worry of parents who go to sleep and wake up with the constant anxiety of, “What will happen when we are not here?

Then there was a need to deal with other issues that people with Down syndrome face, such as education and special needs, and complex medical issues. For too long, parents had been firefighting simultaneously on too many fronts – on healthcare and education, as well as social care, struggling to achieve the required services for their child.

My own personal experiences (the boy next door when I was growing up had Down syndrome), my work as a family doctor and my experiences over three decades as an MP convinced me that these changes were needed. The fact that the Bill passed unanimously through the Commons suggests that other MPs had similar experiences, one of the great justifications for our current electoral system.

The Down Syndrome Act, now it has received Royal Assent and become law, will work to resolve all these problems in ways already mentioned. I understand Ministers in the Department for Health will announce details of the public consultation soon. and I urge everyone with interests in this area to fully participate in that consultation.

But the Act creates precedents which are enormously important beyond Down syndrome itself.

First, the fact that the guidance currently being created must be laid before Parliament means that the relevant select committees can scrutinise progress of implementation in their respective areas.

This was a hugely important concession made by the Government in Committee. In practice, it means that the provision of services for those with Down syndrome will come under proper and permanent parliamentary scrutiny. While those unfamiliar with parliamentary procedures may not understand the significance of this, it is a major change in the relationship between the exercise of ministerial power (guidance) and parliamentary accountability.

It was decided that this was necessary as a result of Para 1(2) of the Act which states that “Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.” This was interpreted as Ministerial “instruction” rather than simple “guidance”, and so required direct parliamentary oversight.

Given that the government had spent months fighting off similar concessions on the Health and Social Care Bill, there were a number of those on the Bill Committee who wondered why the government decided to set a precedent here. It was, however, the right thing to do.

The second, and arguably more important, change effected by the legislation does not actually appear on the face of the Bill itself. Again, those unfamiliar with parliamentary procedure may not immediately grasp its significance. Some of the Down syndrome charities themselves seem to have fallen into this category.

In the case of Pepper v Hart (1993), the House of Lords in its judicial capacity decided that clear statements made in Parliament concerning the purpose of legislation in the course of enactment may be used by the court as a guide to the interpretation of ambiguous statutory provisions. Put in plain English, the measures on the face of the Bill therefore need to be taken along with the commitments made by the Minister at committee.

The key commitment made at the Committee stage of the Down Syndrome Bill by the Minister, Gillian Keegan, was:

“I commit that the Secretary of State will ensure through statutory guidance that the integrated care boards will have a named lead for overseeing the implementation of the guidance issued under the Bill. That named lead will ensure that Down syndrome statutory guidance is implemented and considered throughout the commissioning decisions of an integrated care board. That will play an important role in ensuring that there is accountability for improvements at the local level and that the intentions behind the Bill are fully raised across Government.”

This is a profound change and one which I have wanted to see for a long time. It begins what I hope will be a process of “de-anonymisation” of the civil service.

For now, Down Syndrome is the only condition where there will be an identified individual responsible for provision at the ICB level. It is likely that other groups, representing other clinical conditions, will want to replicate it. I specifically wanted this change as part of a process of dramatically increasing the accountability of those responsible for the provision of health care.

Those whose job it is to implement policy and make things happen on the ground will now be visible to those who require the services. No longer will parents write to a health board with just the hope that someone picks it up. They will now know who is responsible, who to write to, and who should be replaced if they don’t get the public service application they are entitled to.

I hope this will be rolled out to more and more clinical groups covering ever greater numbers of conditions and patients. It should also be mirrored across the delivery of government to ensure that those who have paid from their taxes for the provision of public services will benefit from accountability and transparency in their delivery.

Conservatives should embrace this quiet revolution of empowerment. It could, with imagination, give us a gently radical agenda as we move towards the next election.