Part of the debate – in the Senedd at 5:20 pm on 24 February 2021.
Indeed, the health system cannot be relied upon to identify promptly adverse outcomes arising from a particular medication or device. The yellow card scheme in which doctors can report adverse reactions to treatments is not fit for purpose. As Cumberlege notes, there is gross underreporting and our complaint systems are both too complex and too diffuse to allow early signal detection, and I do think that is very, very worrying. And it led to recommendation 7, which calls for databases on all devices, allowing for patient identification and audit of outcomes. Lack of information and databases makes the system opaque.
A further flaw is the opportunity for conflicts of interest to arise in the medical profession. This is particularly so, the report notes,
'where doctors have financial and other links with the pharmaceutical and medical device companies. Currently there is no central register of clinicians’ financial and non-financial interests.'
This led to recommendation 8, which calls for the register of the General Medical Council to include a list of financial and non-pecuniary interests. And I'm pleased the GMC has noted that the current arrangements to record and manage interests falls short of delivering adequate transparency and assurance for patients. Indeed, I should note that the GMC has taken an interest in this short debate and I believe they've made a very helpful briefing note available to Members and I do welcome that.
Let us return to the voice of patients. Here are a few patient voices quoted in the report:
'I have had a constant battle to get the help and treatment I needed with my mesh complications. "Gaslighting" and a "fobbing off" culture appears to be rife'.
And I would remember that this is probably from an older patient, but the term 'gaslighting' is used for when someone in a position of power implies the person is losing their mind. What an experience that patient must have gone through. Another patient:
'the person I once was, she has gone and no-one seems able to help me. No-one is listening.'
Another patient:
'They would tell you there is nothing wrong with you and that you are just a hysterical woman'.
What a thing to have implied to a patient who is suffering complications from a particular procedure. And finally:
'Had I realised the full implications of this medication, I would never have taken it.'
In the UK Supreme Court's landmark case Montgomery v Lanarkshire Health Board, it was held that obtaining consent needs to be framed by the information an individual patient requires. It is the patient's right to be told whatever information they need to know and in a manner that they can understand so they can make decisions on whether or not to proceed with a particular procedure or medication. In other words, there needs to be a true equality, a true partnership in the decision-making process between patients and their treating physicians. But this requires not a plethora of information by a confetti of patient information leaflets that lead to confusion and give little support in their interpretation, but rather effective patient decision aids. Patient decision aids encourage active participation by patients and healthcare professionals to make decisions. They make it easier for patients and those professions to discuss treatment options, and this is done through information and clinical evidence, the discussion of benefits, risks and uncertainties, the acknowledgement of patient preferences, which can be quite profound in many areas of medical practice, support for patients, so that they are taken through the decision-making process and given a chance to fully understand it, and recording and implementing these joint decision-making decisions. And it is not to be a one-off consultation but a process that allows patients time for reflection and understanding, hence the need for recording, and that done by various technologies now—audio and video.
I now want to conclude by asking the Minister if, in his response, he could cover the following: whether the patient safety commissioner that has now been established by the UK Government for England will have a role in Wales, and possibly be an England-and-Wales appointment, or will a similar office be established for Wales, and if not, why not, and how will the Cumberlege review in this respect be carried forward in Wales; if he would review the provision of informed consent in the Welsh NHS, and in particular the use of patient decision aids, their improvement and their application across the board as a matter of common practice; and finally, whether databases are going to be held on devices, so that we can have proper audit and evaluation of outcomes.
I finish by once again commending the work of Baroness Cumberlege and also paying tribute to the many witnesses from Wales who gave evidence. It's time for us to act on this excellent review. It has many, many lessons for us to learn in Wales. Thank you very much, Deputy Presiding Officer.