29 September 2022: Witnesses related to Alder Hay Children's Hospital - B

The second Alder Hay witness was the mother of a son who was sitting beside her while she gave her testimony. She was a nurse, but never worked at Alder Hay. It was known there was haemophilia in the family. She was told if she had children, any boy would be mild like the older relative who had been diagnosed in the family. After her son was born, there was a bleed into a foot, but the hospital x-ray said there was nothing to worry about. Shortly thereafter there were other bleeds which initially were also said to be ok after x-rays, but knowing the haemophilia issue, she pressed for a referral. Dr Martin at the Haemophilia Unit at Alder Hay did tests which confirmed her son was actually a severe haemophiliac. This came as a shock to the witness, after what she had previously been told. The witness had not been able to obtain treatment records about what was used to manage her son’s bleeds at Alder Hay once he was one of their bleeding disorder patients. Sometimes she would go to the hospital and wait in the ward, often for more than two hours with a child in distress, for the treatment to come up from the Haemophilia Unit, and it would usually be administered by staff who knew nothing of haemophilia care. The witness only became aware of the various treatment risk issues from reading the Peter Jones book. At no point did anyone ever speak to her about these at Alder Hay.

On one occasion she was asked why she was not using Tranexamic Acid to stabilise clots, but the need to do so had never been explained to her. At that point she demanded to see someone who could give her all the information needed. After that she treated her son at home rather than taking him to Alder Hay. Later again, her son was very ill and so she took him to hospital. She worried he may have AIDS but said nothing at the time. Test results included a sideways mention that he had tested negative for AIDS. She had never been told that an AIDS test was being done, or that it was even in their thinking. The witness did not know about other children being diagnosed with AIDS at Alder Hay.

The family moved to a new area. She noticed on the treatment packaging which came from the new hospital a warning that it could not be guaranteed as completely free from HIV. Giving treatment was difficult with that knowledge. The boy was put on prophylaxis due to recurring ankle bleeds. The next development was being told that her son had Hepatitis C. This surprised the witness, but she had a good relationship with Dr Bevan at the new hospital. After a set of blood tests, it was reported that HIV was negative, but confirmed he was positive for Hepatitis C (HCV). From then she made herself an expert on HCV so she could give her son the best possible treatment. This included making sure her son’s diet was as good as it could be. He was 8 years old at the time. 

There was the suggestion of her son’s treatment being moved to St Thomas’ Hospital. The target joint, the ankle, was very problematic. St Thomas’ treatment was meant to be “the crème de la crème”. Dr Savidge at St Thomas’ was a great support to her son. He wanted to ensure he received Factor 8, but “a clean version”. A patient had to be virus free. It seems that at some point her son had “cleared” the HCV virus.

By the time her son was a young adult, there was a notification of a risk of vCJD exposure. They were a plant-based diet family, so they considered the risks to be minimal (given that the issues assumed to revolve around eating beef). Later when the son had moved away to his own home, he had a bike accident due to being dizzy. He also had gastro-intestinal bleeding. The hospital wanted to look at the problem through a scope, but after a few days of nothing happening, the witness pressed them and learned they wanted to have it done at St Thomas’ Hospital because there they had special equipment for patients with viral infections. But she insisted it be done at the local hospital, and the resulting removal of a few growths fixed the problem.

On reflection, the Alder Hay experience had been horrendous; no information, uncaring attitudes by some staff, and more. She was able to use her professional training to challenge consultants. There was an example from her own work which demonstrated the kind of hierarchical attitudes held by some senior clinicians. Counsel asked about the general experiences of being a mother of a haemophiliac child. She related how she was able to use her vocational training to ask questions, but it did not always allow her to get what she needed from the clinicians treating her child. As a mother, there was the normal concerns where problems kept coming one after the other, and she was mainly left without support, particularly at Alder Hay. A question of clarification confirmed that the home treatment when her son was younger came from Alder Hay.

The Chair asked about the developments of organisational cultures within hospitals, referring to the example when she was the Ward Sister who was the patient advocate who stood up to the consultant. Nowadays, there isn’t anyone in that role, she said. Advocacy is now up to the family who are not really able to speak up with any authority. She saw this as a tragedy.

The witness said that as a nurse she always wanted her patients to trust her. That trust comes from the prescriber. The prescriber’s trust comes from the scientist and researchers. The situation with the breakdown of trust as it related to contaminated blood was “unforgivable”.

The Chair briefly addressed the son about his rugby shirt. It did not mean he played rugby; it was a present. So, the naturally protective role of his mother had not been compromised by any rugby playing.