But we have one remaining item of business, and that item is the short debate. And the short debate today is to be introduced by Huw Irranca-Davies.

Diolch, Llywydd. And in opening this debate, can I give my thanks to all those in our NHS who carried out such sterling work and continue to do so? But I'm looking at a very difficult, historic case with a long history here today, and some of the details will be distressing to the family and to those who hear them for the first time.

The Deputy Presiding Officer took the Chair.

This debate seeks to explore with the Minister crucial matters of the right of an individual to receive safe medical treatment and the right of that patient and the family to access medical information in a timely manner to pursue complaints and, where necessary, police and other investigations, and the extent to which the culture and the processes of the NHS in Wales have changed in recent years to ensure transparency, to take timely action, to resolve issues, to promote redress and, where necessary, compensation, and, frankly, to front up and to apologise when things go wrong.

As I mentioned, this is a case with a very long history. I first became involved 15 years ago, when I was the Member of Parliament for Ogmore. But whilst it is a historic case that began at a time when the legislative context was different, it has ongoing consequences for those who are living every day with the results, namely Kelly Wilson whose treatment went so badly wrong, resulting in her now requiring daily medication and injections without which she would not survive, along with the real possibility of leading to cardiovascular disease and cancer and, ultimately, premature death.

Kelly was admitted to the Princess of Wales Hospital in 2005, where she was diagnosed with suspected pheochromocytoma, PCC. These are rare tumours, mostly adrenal, and also with symptoms of acromegaly, most symptoms of which are usually due a hormone disorder associated with the pituitary gland producing too much growth hormone. However, importantly, some can come from a tumour pressing on nearby tissue, such as pushing against nearby nerves, which result in headaches and vision problems, both of which Kelly presented with.

Kelly and the family were led to believe for many years that an MRI scan had been undertaken when she was transferred to the University Hospital of Wales, after Kelly was admitted there on 28 September. And as the notes on 30 September at the University Hospital of Wales say, having been transferred on the twenty-ninth, it states, in quotes, 'chase MRI results from Bridgend, acromegalic features and pituitary working.' Now, it's unclear whether this inferred the pituitary was working or that they needed to check that it was working, but either way the significance of these comments should not be undermined, as they emphasised at this very early point in the Princess of Wales, and prior to surgery, the importance of an MRI scan and pituitary function.

Following her operation to remove the PCC tumour on 9 November 2005, a biopsy of the excised tumour the same day confirmed that it was indeed a PCC tumour and, crucially, that there was no evidence of growth hormones, meaning that the PCC was not the reason for the presence of excessive growth hormones. There was clear medical justification at this point where Kelly presented with her medical history and the symptoms of acromegaly for an MRI be carried out, and yet, at this critical point, no MRI was done. Worryingly, but tellingly, as Kelly was leaving the ward on a trolley to have surgery, another trolley arrived to take her for an MRI scan, the crucial MRI that never actually happened.

Now, at some point, regrettably, Kelly suffered a pituitary apoplexy, which is caused by either death of an area of tissue, known as infarction, or a haemorrhage in the pituitary gland, and it's usually associated with the presence of a pituitary tumour, resulting now in her life-changing prognosis. It's worth noting that an MRI scan was eventually undertaken, on 22 November 2005, but the report didn't indicate any abnormalities with the pituitary. A later MRI scan on 2 June 2006 showed evidence of a former, now dead, tumour, which led to the re-examination of the report relating to the earlier scan of November 2005, when it was established that the report was incorrect and there was actually evidence of a recent tumour and infarction.

But this doesn't end there. At a subsequent civil court hearing, years later, expert witnesses were supplied with the original report of the scan undertaken on 22 November 2005, as opposed to the findings of the updated correct version relating to the scan of 2 June 2006. This resulted in medical experts incorrectly determining on a previous report that the infarction was inexplicable.

At the request of the family, Kelly's care was subsequently transferred out of Wales to Bristol in November 2006, and the referral letter to the consultant in Bristol stated that Kelly had suffered a pituitary apoplexy. This information, by the way, incredibly, had never been relayed to the family.

Now that's a short summary of some of the tragic series of medical and clinical events that irreversibly changed Kelly's life and the lives of those around her. It must be put on record, of course, that the health board would dispute many parts of this clinical and medical narrative, but what cannot be disputed is this: this case has been routinely characterised from the very beginning by delays from the health board responding to requests, by denial of information or even the very existence of information, and this obfuscation led to a series of health and subsequent police investigations and legal proceedings being frustrated because of the inability to provide basic, essential health records in a timely manner, which would have facilitated those investigations.

I have personally witnessed the distress this has caused the family over these many years. They are still seeking answers for the physical and the emotional toll on Kelly and her family, which they will have to live with for the whole of their lives. Their experience, beyond the life-changing health impacts suffered by Kelly at the time she was receiving treatment, of the obfuscation and the repeated denial of access to information has undoubtedly exacerbated the suffering and the trauma of this family. And to this day, whilst the health board—. I honestly thank the former chair for meeting with me and with Mr Wilson at a later date. The chair has subsequently acknowledged the stress this has caused the family and the difficulty for the family and for my office in obtaining information, but this falls far short of an apology or any admission of fault, and it therefore raises the additional concern for the family of whether lessons were truly learned at the time and whether remedial actions were taken to prevent this happening to someone else.

And this case has been littered with detailed but critical discrepancies throughout. I will expand using some examples. Having pointed out to a doctor that copies of medical records the family had received were missing essential items, such as the results of a blood test at the time that Kelly was on the A3 Link ward, a doctor informed the family they could not have these results due to the computer only having five days' memory. Years later, this statement was withdrawn by Cardiff and Vale University Health Board as an, in quotes, 'off-the-cuff remark', but this off-the-cuff remark was used extensively subsequently by Cardiff and Vale UHB in communications with external bodies during that time as a justification.

Now, Garry and Kelly have continued their pursuit for the missing blood results. Their concerns focus on a crashed server in 2007, which was queried with both Cardiff and Vale UHB and also subsequently with the chief constable in police investigations in May 2015. Cardiff and Vale UHB were asked how many patients' records were lost in this crash, why was there no archive back-up of this server, and whether all active servers are now backed up on a regular basis. Their response indicated there was no record of any server crash in 2007 resulting in the loss of patient records, and that back-up and archive processes at that time would have been backed up according to standard industry-strength protocols, using the appropriate infrastructure and technology. 

In the subsequent police investigation, the father, Garry, was informed that the chief constable of South Wales Police agreed to undertake tests on the crashed server, yet those inquiries ended abruptly with the police accepting the health board's original assertion that no paper records exist and that digital records were irretrievable because of the server failure and that other records relating to Kelly were also lost. And there are other matters relating to the police and health board response to these inquiries and their aborted investigations that fall outside the remit of this Senedd, which Mr Wilson is doggedly pursuing through his Member of Parliament and possibly through discussions with the Home Office and a future UK parliamentary debate.

But the questions for this debate are as follows: if there was no server failure, why is there no record of the actions of the doctor who attended the A3 link ward from the high dependency unit when Kelly became so ill and inevitably ultimately saved Kelly's life? No record. Why are there no drug charts available between 10 and 22 November? Where are the results of the blood tests, the ones the nurse—also from the high dependency unit, who attended with the doctor—had gone back to HDU to test and to obtain the speedy result that Kelly had no oxygen in her blood? Why did it take Garry and Kelly 10 years before it was confirmed that, as they'd always believed, there had been a false insertion to the handwritten notes? Why have Garry and Kelly had to battle to obtain this and every scrap of critical information?

These and other detailed outstanding questions were handed to the then chair of the health board on 26 July 2019 by Garry when he met with her, and yet the family still await detailed responses. Garry and Kelly were invited at one point to attend the hospital to inspect the original medical records, which they did. However—and this is important—at a court case, Cardiff and Vale UHB's barrister told the judge not once but twice that Kelly and her family had been offered the opportunity to attend the hospital and inspect the records but had declined. Yet the family are in receipt of internal e-mails, only after a freedom of information request, confirming their attendance to inspect the records—error upon error upon obfuscation. The family had originally made their claim to the courts on the ground that Kelly had self-overdosed, they'd been told, on morphine when using the intravenous patient-controlled analgesia machine, the IVPCA, having been led to believe that this was the reason for Kelly's deterioration whilst on the A3 link ward. However, these machines are set to lock out, to ensure that patients cannot overdose, and it was later confirmed there was indeed no morphine overdose.

Let me now turn to the issue of consent for treatment. Kelly at 16 years of age would have been deemed competent to sign the consent form in use at the time of her surgery in 2005, as outlined in the 2002 'Good practice in consent implementation guide: consent to examination or treatment'. Published by the Welsh Government, this guide provides a model consent policy. It states, and I quote:

'"Consent" is a patient’s agreement for a health professional to provide care. Patients may indicate consent non-verbally (for example by presenting their arm for their pulse to be taken), orally, or in writing. For the consent to be valid, the patient must'— amongst other criteria, in bold—

'have received sufficient information to take it'.

Having given her consent to the operation to remove the PCC, the issue of valid informed consent and the significance of an MRI scan was highlighted during the subsequent civil case when the University Hospital of Wales made a claim that the infarction of Kelly's pituitary was deemed 'unavoidable'. Why, then, if unavoidable, had Kelly and her family never been informed that this possible complication could arise from the procedure she was scheduled for, especially given the symptoms of acromegaly on admission? After complaining about the inadequacies of police investigation—which had taken two years and nine months—subsequently to the professional standards department, Garry and Kelly obtained access to an undisclosed interview, which led them to see the investigation report. It contained a response from the General Medical Council to Garry's complaint about two doctors. This is one of the documents they had been seeking but had been refused access to three times by the University Hospital of Wales. This document gave strength to their claim that Kelly and her parents had not given properly informed consent before surgery; they did not have the full facts. The GMC was scathing of the two doctors regarding the lack of communication with the patient and parents and advised one to take up this failure with the trust.

Minister, successive Welsh Governments have aimed to change the culture of accountability in health boards and how they respond to complaints, and how they deal with redress and compensation. So, I ask whether recent changes in legislation, including that affecting the remit and the powers of the public services ombudsman, have proved successful. Can the Welsh Government clearly demonstrate this to be the case, or is there still a cultural change to be made? Indeed, my constituents' experience has been wholly opposite to what is now intended. Their experience has proved to be what has seemed to them like a system of institutions closing ranks to protect themselves instead of giving justice and redress to complainants. Conflicting responses and excessive discrepancies throughout the past 15 years, many of which have subsequently proved in Kelly's favour, fuel and compound the family's distrust in these systems and institutions, and have inevitably contributed to their ongoing quest to seek answers and redress.

Minister, in conclusion, 15 years from Garry Wilson coming to me with his original concerns for his daughter Kelly, there are still many unanswered questions: information that was withheld or delayed or has simply disappeared; answers in respect of the information, which was unclear, or indeed changed over time; a potential police investigation, probably prevented from progress because of the absence of this critical information. But most of all, Minister, a young woman's life that has been irrevocably changed; a family who have been through emotional turmoil and domestic disruption for years; a continuing search for answers to questions that should have been answered years ago; and an abiding belief from the family that, at the very time when public institutions should have been on their side helping them through this crisis, putting things right, learning lessons that would avoid this happening to other families, those institutions did the opposite. They rounded the wagons and protected themselves from criticism and blame. So, Minister, what hope can we give to Kelly and her family that the answers they seek will be forthcoming? Finally, what hope can we give that this culture of closing ranks has changed definitively so that tragic cases like this do not ever happen in future?

I now ask the Minister for Health and Social Services to respond to the debate. 

I thank the Member for Ogmore for bringing this debate before the Senedd and for the level of detail, the difficult detail, that he's provided in setting out how the family of his constituents feel. No-one could have listened to what has just been said and fail to be moved and concerned. It's a reminder, if ever one was needed, that complaints processes are hugely important. The way that people are treated during healthcare, and then, if there is a subsequent complaint, how that process is managed, does have a significant and lasting impact on patients and their families. It sets out why we need to get them right—to make sure that, if there is a complaint, we get it right.

This family clearly had a poor experience of NHS care and then the NHS complaints process, and the difficulties and frustrations they experienced in many ways underline and perhaps exemplify why we have sought to fundamentally change the way that NHS concerns and complaints are dealt with in Wales. The original complaint was made in 2006. At the time, the NHS procedure for complaints was completely different from the one we have in place now, with a number of different stages and without what we now expect to be a patient-centred focus.

In 2011, when I was first elected, so I can't take credit for it, the introduction of the 'Putting Things Right' process introduced a complete overhaul of the way NHS Wales complaints and concerns are dealt with, and how families and patients must be engaged in the process. If that had happened here, from 2006 onwards, I think there'd be a different conversation the Member would have had with his constituents. This has represented a significant change, obviously, in process, but a significant cultural change for NHS Wales in the way that they respond to concerns, complaints and serious incidents. In particular, we tried to deliberately introduce a strong focus on openness and honesty. Being open is a central theme to 'Putting Things Right', and it operates on the basis of investigate once and investigate well. 'Putting Things Right' also requires the involvement of the patient or their representative in the concerns process to try to ensure that the basis of those concerns is properly understood and the result of the concerns investigation is then clearly communicated and explained. NHS providers must also advise complainants of the availability of advocacy services that can guide and support them through the complaints process. 

It is significant that the new arrangements introduced a single and consistent method for grading and investigating concerns. Again, it places a strong emphasis on patient safety and experience. Improvement in safety and experiences are objectives from the complaints process now. For example, there's a requirement placed on all NHS providers to report on the number and types of concerns made each year, to summarise the actions taken to improve services as a result, and how many complainants have been notified. 

We are, I think, rightly proud that in Wales we have NHS redress arrangements now that were introduced as part of 'Putting Things Right' in 2011. We're the only UK country to operate such a scheme. It provides free and independent legal advice, and instruction of independent clinical experts to patients when, on investigating a complaint, it becomes apparent that an NHS body or the treatment it provided was or may have been negligent and a claim was worth up to £25,000. Our redress has succeeded in improving access to justice for patients who have clinical negligence claims. It also results in much quicker resolution of potential claims when compared to the traditional litigation process. And it means the costs of resolving low-value financial claims are proportional to the damages awarded. 

Even though 'Putting Things Right' has completely overhauled what was an outdated system for dealing with NHS complaints, we have not stood still. The 'Putting Things Right' process was reviewed by Keith Evans in his report, 'Using the Gift of Complaints', that was published in July 2014. That review concluded that 'Putting Things Right' was a sound process, but it made recommendations for improvements. One of the issues related to a national platform to collect complaints data in a consistent way, and the NHS, with Welsh Government support, is currently working on a 'once for Wales' concerns management system that should help to further standardise the way that NHS bodies in Wales record their complaints and concerns data.

That will bring more consistency again to the way that data is both recorded and then reported right across Wales. However, the next major step forward will be seen when we implement fully the Health and Social Care (Quality and Engagement) (Wales) Act 2020 and bring into force the duties of quality and candour. As Members will know, the new duty of quality will apply to all NHS bodies in Wales. It requires them to exercise their functions with a view to securing improvement in the quality of health services. 'Quality' in the Act is defined to specifically include patient experience, which would encompass experience in using complaints processes and procedures.

There is international evidence that increased openness and transparency are associated with the delivery of higher quality care. Organisations with open and transparent cultures are more likely to spend time learning from incidents, and they are more likely to have processes in place to support staff and service users when things go wrong, as they will do from time to time, because it is inevitable when delivering complex services that sometimes things do go wrong. But when they do, the way in which organisations deal with those situations becomes very important, and can make a huge difference to people's experience and their ongoing relationship with the care provider. That is of vital importance in healthcare settings, where patients often need to have those ongoing relationships. 

In general, patients and service users want to be told honestly what happened, and to be reassured that everything is being done to learn from what has gone wrong, and that's why we're introducing the duty of candour in Wales. Under the terms of the Act passed in this Senedd term, it will apply to all NHS bodies and to primary care providers in Wales, and independent healthcare providers in Wales, through regulations made under the Care Standards Act 2000. The duty will build on and cement the 'being open' principles in the current 'Putting Things Right' process. 

I do want to say that the Member asked a number of specific questions about his constituent that I can't answer in this debate. My officials will review the Record, but it may help if the Member puts those in the form of a letter as well, so I can respond properly to him, to make sure that they aren't lost in the Record, or the potential for the pre-election period to interrupt that work, because I do want to make sure we don't lose sight of the individual and her family that the Member has raised issues on behalf of today.

But I do want to reiterate the importance of robust, open, and honest complaints procedures, alongside a duty of candour, and I can say very clearly that I really am sorry that the Member's constituents—this family—did have such a poor experience of NHS care and the complaints process. Since then, our complaints processes here in Wales have changed almost beyond recognition, but there is still much more to do to ensure that we do continue to improve, more to do with the introduction of the duty of candour in practical terms, and our overarching aim is to listen, to learn, and improve. I hope that, in future, the Member, other families and other constituents across Wales will find a better process for care and the experience afterwards if things do go wrong. Thank you for your time today. Thank you, Deputy Presiding Officer. 

Thank you very much, and that brings today's proceedings to a close. Thank you.

The meeting ended at 18:01.