“Accountability is important, but that can only come when you get to the truth.” An interview with Will Powell, father of Robbie

Summary

In 1990, 10-year-old Robbie Powell died due to undiagnosed Addison’s disease. Tragically, his death was preventable. Concerns that Robbie may have had Addison’s disease had been raised following a previous hospital admission and a diagnostic test requested, but this was not followed up or shared with his parents, Will and Diane. In the two weeks before Robbie died, Robbie was seen by five GPs on seven occasions, but his parents were consistently told that there was nothing seriously wrong with their son.

Robbie’s father Will has worked for decades to uncover why his son died and how the doctors and organisations involved responded following Robbie’s death. In this long-read interview, Will describes the events that led to Robbie’s death and his subsequent fight for justice, including his role in the successful campaign which resulted in organisational legal duty of candour. He talks about the devastating impact that having the truth withheld continues to have on his family and other families. Will then outlines what needs to be done to better protect families and ensure they get the full truth when a child dies due to avoidable harm.

Please note: readers may find the following content distressing.

About the Author

Will Powell has been campaigning for justice since the avoidable death of his son Robbie Powell in 1990. He campaigned for the introduction of an individual legal duty of candour for all healthcare professionals. An organisational legal duty of candour became law in 2014 and Will continues to call for an individual duty of candour for all healthcare staff.

Questions & Answers

Hi Will, thanks so much for talking to me today. To start with, can you introduce yourself and tell us your family's story?

I was born in Glasgow and moved to Wales with my family in 1968 when I was fifteen, where I later met and married my wife Diane. We had three children, of whom Robbie was the youngest—Robbie was a lovely boy and we were very close.

In December 1989, Robbie became ill and was rushed to hospital with abdominal pain, vomiting, excessive weight loss and dehydration. When I got to the hospital, I was told that he was critically ill and that he had nearly died. It was very frightening as I had never experienced anything like it with my other children. While Robbie was in hospital, we weren’t given much information about what was going on, although we kept asking. We were eventually told that he had gastroenteritis caused by a throat infection.

What we didn’t know at that point was that the paediatrician suspected Robbie had Addison’s disease, which is a very serious but treatable condition. However, without treatment, it invariably results in death. We were also unaware that the doctor had ordered an adrenocorticotrophic hormone (ACTH) test, which would have confirmed that Robbie did in fact have Addison’s disease. When he was discharged after four days, we had no idea that the medical team suspected there was anything else wrong with Robbie, or that he needed further tests. We now know that Robbie’s symptoms and abnormal electrolytes were caused by an adrenal crisis, but we had no idea at the time.

Five weeks later, Robbie had an appointment with the paediatrician at the hospital, who couldn’t believe that he had gained so much weight—Robbie had lost nearly 30% of his body weight during his episode of illness. My wife asked whether the cause of his illness had been gastroenteritis as we had been told and the paediatrician confirmed that it was, even though he suspected Addison’s disease and had ordered the ACTH test, which had not been done. As far as we were concerned, Robbie had a clean bill of health. 

Can you tell us about the events that led to Robbie’s death in April 1990?

In April of 1990, Robbie began to be unwell again. He had a sore throat and jaw so we took him to the health centre to get him checked. We saw the same GP who had admitted Robbie to hospital by ambulance in December and he couldn’t find anything wrong with him and sent us home. However, Robbie continued to deteriorate and over the course of that week, we saw different GPs at the medical centre on two further occasions, neither of whom found anything wrong with him. 

Eventually, Robbie got to the point where he couldn’t stand unassisted. It was Easter Sunday and I took Robbie to the community hospital and had to carry him into the consultation. The GP there thought Robbie had glandular fever and prescribed him amoxicillin. Because Monday was a bank holiday, he said we should go and get blood tests on Tuesday. Tuesday would end up being the day that Robbie died.

On Monday, a fifth GP, the senior partner at the health centre, saw Robbie at home, because he was too unwell to move. He was concerned and decided to do a blood sugar test, but couldn’t because the test kit he had was out of date. We now know that low blood sugar precedes an adrenal crisis, and had Robbie’s blood sugar been tested, I’m sure it would have triggered a hospital admission. Despite his concerns, the GP still said that Robbie didn’t need to go to hospital at that point, although he advised us that if he deteriorated further, Robbie should be admitted. He rearranged Robbie’s blood tests to the Wednesday 18th April, by which time Robbie had already died. 

The next day, my wife was assisting Robbie to the bathroom when he slipped through her arms and lost consciousness. I called the medical centre and shortly after they sent a GP round—the second of the GPs who had seen Robbie at the health centre two weeks before. By this time, Robbie had regained consciousness, but his lips were blue and his pupils were dilated. Knowing what I now know about Addison’s disease, I realise the significance of these symptoms, but at the time I had no idea. The GP said there was nothing seriously wrong with Robbie and that he didn’t need to go to hospital, even though we highlighted what the senior partner had advised the day before. But she refused to admit Robbie and prescribed another antibiotic.

I was very concerned about Robbie’s condition as he was clearly a very unwell child so I called the hospital ward where Robbie had stayed during his admission in December. The staff nurse I spoke to reassured me to trust the GPs and advised me to call them out again if we were concerned. Robbie then began to have severe abdominal pain so we called for a GP to come again—it was the same GP who had visited him earlier. She still refused to admit him, but we insisted, and, in the end, she agreed to write a referral letter to put my wife’s mind at rest. When I asked whether she had ordered an ambulance, she told me to take him by car and stormed out of the house.

So I put Robbie in the car and drove as fast as I could to the hospital, which was about 12 miles away. I was directed into a side room, and the nurses were shocked at how unwell Robbie looked. Diane almost fainted because of the panic of the nurses so she was taken out of the room. The next moment, Robbie’s eyes were fixed in the back of his head and his mouth was wide open. I shouted “Robbie, Robbie!” but there was no response. Robbie had taken his last conscious breath. He was rushed to ICU and we were later told that he had died.

I believe the cover-up relating to Robbie’s death started the night he died. The doctors told us that Robbie’s cause of death could have been encephalitis or a brain tumour, but in fact his brain scan was normal.

My wife and I were obviously devastated that our boy had died in front of my eyes, after being seen by so many doctors on so many occasions. We knew that there had to be an underlying cause that someone had missed. There were so many things that didn’t make sense about the various diagnoses Robbie was given and the medications he was prescribed. Although it felt horrible, I had to give consent for a post-mortem—we needed to know whether whatever condition had caused Robbie’s death could be present in our other two children. The post-mortem showed Addison's disease was the cause of death, but also stated that it was a natural cause, so the coroner claimed that the case didn’t qualify for an inquest. However, in 2004, there was a 20-day inquest with a jury finding of natural causes contributed to by neglect.

What barriers have you faced over the years when trying to tell Robbie's story and highlight how he was let down?

We have faced so many barriers to try and get to the truth about why Robbie died, who failed to act on the concerns that he could have Addison’s disease and why no one told us that he needed to be tested. There were three vital pieces of information recorded in Robbie’s GP notes that we were unaware of at the time of his death: that it was suspected that Robbie could have Addison’s disease, that he needed an ACTH test and, most importantly, that he needed to be sent immediately back to hospital if he became unwell again.

The first two GPs Robbie saw hadn’t read his notes so were unaware of the risk to his life. But the third GP did read the notes and was aware that Addison’s was suspected and that Robbie had been unwell for 11 days. However, he just prescribed Dioralyte for Robbie’s vomiting and informed us that he would refer Robbie immediately back to the hospital clinic. I still don’t understand why he didn’t tell us that Addison’s was suspected. Had we understood the risk to our son’s life, we would have taken him to the hospital immediately.

After the post-mortem, the senior partner at the practice asked to come to the house and speak to me. I recognised how hard it would be for him, as it was for me. I just wanted answers about what had gone wrong. When I asked, the GP confirmed that Robbie shouldn’t have died. He had Robbie’s thin medical records with him, and I asked to see them. I read a typed document that said “Information: Needs ACTH test—parents informed.” We had never heard of this test and hadn’t been told that it had been requested. The document then went on to suggest Addison’s disease, which I had just been told Robbie had died of. Nobody had ever told us it was suspected. The GP said it was the hospital’s responsibility to have followed this up. 

It was shocking, and I thought the doctors who failed Robbie would be in serious trouble. The safety net that should have been there for Robbie hadn’t worked. I realised the significance of what was written in Robbie’s notes and wanted to make sure what I had seen and heard was witnessed. So I asked our local vicar, who was also an academic, to be there when I met with the GP again to make notes of our conversation, in particular the reference to Addison's disease and the need for the ACTH test, as well as the instruction for Robbie to be immediately sent back to hospital if he became unwell.

The hospital paediatrician also asked to meet with us regarding Robbie’s death. Although I knew from the GP notes that he had suspected Addison’s disease, I asked him whether he had, and he confirmed that he had. He also said he had requested an ACTH test and showed me the letter he had sent to the GPs, which I had already read in the GP notes. He blamed them for failing to refer Robbie back to hospital when he became unwell. These conversations highlight one of the biggest barriers we faced—no one wanted to take responsibility for the failure to test Robbie for Addison’s disease. The GPs blamed the hospital and the hospital blamed the GPs.

Six months later, I finally received a copy of Robbie’s medical records, but the Addison's letter wasn’t included. There was no document referring to Addison’s disease—the records now stated that adrenal insufficiency had been suspected, a more vague term that could have indicated a different condition. I also found things in Robbie’s records that weren’t true. One example is that the notes of one consultation said Robbie hadn’t been vomiting when he had. I knew the GP had been aware of this—this was the doctor who had prescribed him Dioralyte. He hadn’t recorded this in Robbie’s consultation notes either, but I had a copy of the prescription. As vomiting is a symptom of Addison’s disease, it seemed like an attempt to deny a symptom that should have resulted in him being immediately sent to hospital.

My complaint led to a Medical Services Committee hearing, where I was treated appallingly. I believe the doctors told untruths in their statements, or simply left out anything that incriminated them, having seen my statement before submitting theirs. There was a lot of evidence of dishonesty, some of which I had proven, such as the backdating of the referral letter from the GP to the paediatrician. During the hearing I asked the GP who had prescribed Dioralyte why his notes omitted that Robbie had been vomiting, and he couldn’t answer. But someone else answered for him claiming it was given for abdominal pain which Robbie didn’t have. It was indicative of the balance of power in the room, which was tipped in the doctors’ favour—they were allowed representation from the Medical Protection Society, while I wasn’t allowed any legal representation. 

The questions we raised in the written statement weren’t answered and the chair wouldn’t allow me to ask more than one question. He threatened to send me out of the room when I questioned this. It felt like there was absolute contempt for Robbie’s life. The conclusion of the hearing was that one of these GPs was in breach of her terms of service. She was instructed to conform in future—and that was it.

I exercised my right to appeal to the Secretary of State for Wales against the finding of the Medical Services Committee. At this point, I was allowed legal representation. The Welsh Office hearing was in March, and it was then adjourned to be reconvened in September. During this adjournment period, additional medical records that weren’t disclosed before—which originated from Robbie’s GPs—mysteriously appeared in the case file. As a result of the chair refusing to investigate these inconsistencies, we decided to withdraw from the appeal hearing.

At this point, our local MP made a formal complaint to the Parliamentary Ombudsman on our behalf, who then said that we must first complain directly to the Welsh Office, and if dissatisfied he would then investigate my complaint. However, when we were dissatisfied, we went back to the Parliamentary Ombudsman who then claimed the complaint was outside his jurisdiction. Two years later, the then-Secretary of State for Wales was found to have given an untruthful answer to a Parliamentary question about the Welsh Office’s handling of Robbie’s medical records—and as a result, the Parliamentary Ombudsman finally agreed to look at the case. In 1999 the Parliamentary Ombudsman found that there was maladministration in the case on the part of the Welsh Office. I received £500 compensation for the hardship caused to me by the Welsh Office's failures in 1992. 

In 1994 I submitted a report to Dyfed-Powys Police alleging forgery and conspiracy to pervert the course of justice, but their investigation, supported by the Crown Prosecution Service (CPS), concluded that there was no evidence of crimes committed by the GPs. I later found out that the GPs were retained by Dyfed-Powys Police as police surgeons, and that the police had given them a letter of unqualified assurance that they would never be prosecuted, equivalent to an immunity letter. 

Eventually, a police officer from England—the late DCI Robert Poole—was assigned to review the case. His investigation between 2000 and 2002 found 35 potential criminal charges that could be considered by the CPS. The CPS acknowledged in 2003 that there was sufficient evidence to bring criminal charges of forgery and perverting the course of justice. However, the GPs were not prosecuted because of the passage of time and the immunity letter that was given to them in 1996. A disciplinary investigation in 2003 also found Dyfed-Powys Police institutionally incompetent in relation to the case.

I made a formal complaint against the CPS in 2003, but my complaints were not upheld. I wrote to the Director of Public Prosecutions alleging a coverup—they told me that the matter was closed and any further correspondence would be filed without response. However, an adjournment debate by my former MP in 2013 resulted in a change of approach, and in 2014, the DPP agreed to a legal review into decisions made by the CPS from 1994 onwards. 

The legal review finally concluded in March 2024—after more than nine years—but the same reasons that the GPs could not be prosecuted in 2003 were given. However, the review did highlight "organisational inadequacies" in the CPS between 1994 and 2000. The following was stated in relation to the investigation of my 2003 complaints against the CPS, which is contrary to the view of the Director of Public Prosecutions in 2003 when he closed down my complaint:

"Although we reach the above conclusions in relation to the decision-making and advice as to potential charges conducted by the CPS in this period, we do not consider that the CPS Report dated 11 July 2003, which addressed Mr Powell’s list of complaints about the CPS service he had received to date, provided an adequate and full analysis of those complaints in the context of the available evidence."

If Dyfed-Powys Police and the CPS had investigated my complaints properly at the time, the outcome could have been very different. 

You can read more detail about the extensive evidence relating to Robbie’s case in this article by critical criminologist Sharon Hartles, Robbie Powell: Time for Truth, Justice and Accountability

How have the responses you received from different organisations affected you and your family?

The first thing to understand is that Robbie didn’t have to die. There was a catalogue of errors that led to his death, and these should have been investigated at the time. At the very least, serious lessons should have been learned, but instead the truth was buried and covered up.

The impact on our family was enormous. When Robbie died, my wife still had to get up and look after our other two sons who were 12 and 14 at the time. They went through hell as well—one of my other sons, Ian, died in 2019. He was a recovering alcoholic and I believe was driven to alcohol by the destruction of our family life following Robbie’s death.

Because the truth was covered up time and time again, it almost drove me to suicide and I was unable to work for 25 years as a consequence of Post Traumatic Stress Disorder. I have had to relive Robbie’s death so many times in trying to get justice for him. It continues to have a huge impact on my wife, even though I have tried to protect her from meetings and being involved in news coverage relating to Robbie’s case.

I know we’re not the first family to lose a child. When it happens, you have to choose to do your best to move on with your life, holding on to your memories. But in Robbie’s case, the medical professionals and those that should have been holding them to account never allowed us to move on. The GPs put up posters about my wife and I in the surgery, calling us liars, distorters of the facts and fantasists (for which I later successfully sued for libel). The additional strain something like that puts on your family is unbearable.

The burden of gathering evidence has also been enormous. The box files covering the shelves all over my office all contain documents and evidence relating to Robbie’s case. Robbie died before we had easy access to the internet, so getting evidence was a difficult manual task. The hospital and health centre were not subject to organisational legal duty of candour back then, so it was a struggle to get the information I needed.

Robbie’s case exposed the absence of individual legal duty of candour and was instrumental in the introduction of the organisational legal duty of candour in 2014. What difference do you believe the change in the law has made for patients and families who have experienced avoidable harm?

Campaigning for the legal duty of candour has come at great cost to us as a family. I think it’s very important to recognise that. It not only cost us our son, but we gave up a huge amount of compensation because we refused to settle the negligence claim out of court. The compensation was estimated at £300,000, and at that point in time we had no money, had remortgaged our home and were living on state benefits. But we couldn’t take the money as a matter of principle; we needed to honour Robbie’s life by getting to the truth.

In 1996, the local health authority admitted negligence and liability which prevented the merits of our case being heard in court. They paid £80,000 into the court which included a small payout for Robbie’s death and compensation for the psychological impact on Diane. 

However, the GPs argued to the court that I wasn’t entitled to any compensation from them for the psychological damage I suffered after Robbie’s death, as they weren’t under any legal obligation to tell me the truth. We made an appeal against this, but were unsuccessful, so the £80,000 compensation that was paid into court was taken in legal costs. It’s never been about the money for us; truth, justice and accountability will always be more important.

There have definitely been benefits as a result of the change in the law—organisations can’t use the absence of a legal duty as a reason not to pay compensation for post-death psychological damage caused by dishonesty anymore. There have been cases of families receiving compensation as a result of trauma caused by an organisation’s failure to tell the truth after a patient's death. That wasn’t in operation at the time of Robbie’s death—it was his case that exposed the absence of an individual legal duty of candour in the UK Courts and the European Court of Human Rights (EHCR). However, we are still campaigning for an individual legal duty of candour (Robbie’s Law)—without this, organisational duty of candour is limited in what it can achieve.

What more needs to be done so that patients and families are listened to and cared for when someone may have been harmed or died due to avoidable harm?

Had the GPs involved in Robbie’s care assaulted me physically, they would have been arrested. But damaging us psychologically for the rest of our lives has had no consequences. There’s a pattern to the way that families who lose children to avoidable harm are treated, and it causes huge damage.

The most important thing for families after their child has died is to know the truth about why these errors took place. The death may not be down to one individual member of staff—it may be a collective failure. There will also be times where there are mitigating circumstances, such as staff shortages or failed equipment. In Robbie’s case, every single doctor that saw him, that failed to read his notes, that refused to admit him to hospital, contributed to his death. If these things are admitted, identified and learned from, the family can attempt to move on. But the focus of the doctors involved was to shift the blame from themselves, and we weren’t given that truth.

In order to ensure families get this truth, we need a fully independent body to investigate NHS complaints, particularly those where death has occurred and the family is unsatisfied with the treatment received. I have been calling for this for decades, alongside many others. We need an organisation that can investigate robustly, and without fear or favour. The idea of accountability is important, but that can only come when you get to the truth. 

Perhaps most importantly, as I have already stated, we need an individual duty of candour for doctors (Robbie’s Law). That would mean that if doctors lie after a patient's death they could be taken to court as individuals. The legal organisational duty of candour that we now have only works if doctors tell the truth about the errors they have made. Then the organisation can deal with it and the CQC can oversee their response. But what happens when a doctor doesn’t tell their organisation the truth? The organisation can’t be honest with the family, because the truth has been suppressed. At the moment we rely on the General Medical Council (GMC) to look into complaints about individual doctors, but I don’t believe this system is protecting patients and families. In Robbie’s case, the GMC sat on my complaint for five years, telling me they would respond after DCI Poole’s investigation. In the meantime, having told me there was no time limit on complaints, they covertly introduced a time limit without letting me know. They then struck out my complaint on the basis of the time limit.

I don’t believe in the idea of ‘no blame’ when it comes to avoidable harm or death. Before an investigation, you can’t know what part, if any, an individual has played in the death of a patient. However, I don’t believe most people in the medical profession want this level of scrutiny. No-fault compensation means doctors and organisations can draw a line under an incident without properly investigating it, but nobody is going to learn from that and prevent the same errors happening again.

Related reading

• Robbie Powell: Time for Truth, Justice and Accountability (Sharon Hartles, August 2021)
• “Had my concerns been taken seriously by medical staff, Lewis might still be alive today.” Simon Chilcott tells his son Lewis’s story
• Duty of candour review: terms of reference (6 December 2023)