I want the NHS to be the safest healthcare organisation in the world – but even though we do well by international standards when it comes to giving patients a strong voice there is still much to do.
It is now nearly sixty years since the hormone-based pregnancy test Primodos was first prescribed in the UK – and four decades after it was withdrawn from use – yet the ongoing debate about the safety of the drug carries two important lessons for us today.
The first is the need for relentless vigilance in the face of technological change; and the second is that our regulatory system must do much, much better when faced with escalating patient concern in the future.
Above all, the story of Primodos is the story of those families seeking clarity and definitive answers but instead being met by resistance and defensiveness from a system that appeared more focused on defending the status quo rather than addressing the legitimate concerns of patients.
Nor, sadly, is their experience unique: as with those who took the epilepsy drug Sodium Valproate, or the many hundreds reporting crippling pain linked to vaginal mesh implants, too many have spent too long feeling that they were not being listened to by the authorities in a way that has piled insult onto injuries they have suffered.
That’s why I have asked Baroness Julia Cumberlege to conduct a thorough review into what happened in each of these three cases, and to make a series of recommendations on what should happen to establish a fairer, quicker and more compassionate way of addressing concerns in future.
I have also asked Baroness Cumberlege to consider whether a new Patients’ Champion could help by giving people a single point of contact raising legitimate concerns, as well as whether we need a new independent system to decide what further action may be required either in these cases or in the future. One of the judgements to be made is whether, when there has been widespread harm, there needs to be a fuller, even statutory public inquiry.
From Mid Staffs to Morecambe Bay to Southern Health, patients and their families have had to spend too much time and energy trying to access, lobby and influence NHS leaders and ministers to get a hearing for their concerns. The stress and frustration of campaigning – sometimes in the face of closed ranks and a defensive system - has added insult to injury for too many families. We need to establish a fairer and quicker way of resolving such concerns when they arise in the future.
From genomics to artificial intelligence, Britain is leading extraordinary developments that could transform the way we think about medical science over the next generation – but with innovation comes the need for ever stronger safeguards to protect the best interests of patients.
That means a regulatory system that abandons the paternalism to patients that has characterised medicine for centuries and adopts an approach which sees the patient’s voice as central to everything we do. That is easier said than done – but when it comes to the safety of medicines and medical devices absolutely essential if we are to end the agony and despair felt by too many families waiting too long for answers.
Jeremy Hunt is the health and social care secretary