Redressing the balance: Bruce Norval

Monday 24th September 2018 was the first day of the preliminary hearings of the UK Infected Blood Inquiry^[1]. Two earlier inquiries, dismissed as whitewashes, failed to provide answers and committed campaigners had now been rewarded. The Inquiry would examine the circumstances in which people under the care of the National Health Service (NHS) were given blood and blood products contaminated with HIV and hepatitis viruses, and possibly Creuzfeldt-Jakob disease (CJD); the impact on those infected and affected; the nature, adequacy and timeliness of the response from agencies involved; to what extent individuals may have been misled and denied treatment; and whether those agencies and individuals covered up the facts.

The first three days were held in public, given over to opening statements that included witness accounts from people with haemophilia and their families. Their stories are profoundly moving. The Inquiry is truly an historic step towards accountability for the government, the NHS, health professionals and all involved in haemophilia care in the UK decades since 1970. The man who worked for many years to make this a reality is Bruce Norval.

Bruce was born in Edinburgh in 1965. At age three he was admitted to hospital with bleeding from a fall; after three months on the ward, he was diagnosed with haemophilia B. It did not make much difference to him at the time.

He recollects a boisterous childhood but his father revealed, shortly before he died, that his parents had tried to protect him. They had tried to stop him taking risks, but then realised it had been a mistake to restrain this energetic boy. Bruce recognises that there can be a gap between parental concern and the views of a child who has known no other life.

Bruce’s first treatment with Factor IX was in 1973. At the time it made him feel like Superman – not only did it stop the acute bleed, but the many minor cuts that come from being an active eight year-old also miraculously healed. And so it continued for several years until, in his early teens, his schoolwork began to suffer. Once top of the class, he began to struggle. He became aggressive, disruptive and isolated, and his relationship with his family broke down (and never recovered). He had night sweats so severe that, thinking he had wet the bed, he would sneak the sheets into the washing machine and remake the bed before his mother came home from work. These were early signs of liver damage: he had been infected with hepatitis C.

Bruce was not told of the diagnosis, though with hindsight he realises his liver function was being monitored routinely. He was not told of the diagnosis even when he began a career in nursing. By his early twenties he was too sick to work. On top of the challenges of living with haemophilia and hepatitis, post-traumatic stress disorder makes him sweat and shake. Bruce wants health professionals to understand the anger that he and others with haemophilia feel – only then a conversation can begin about building a better future, starting with better care for children.

That service should be extended to siblings, whose experiences are not fully recognised, and to support the family as a whole as they cope with a disabled child (or maybe two or three). One of the skillsets most needed but most often missing from treatment centres is that of the social worker.

Such initiatives should take into account the fact that children have their own ways of dealing with problems. Bruce recalls how he reacted to bleeds as a child:

Children respond best to the parent who is measured and controlled, he continues, but parents need support to carry out that role.

This resilience is an untapped resource in haemophilia care:

When Bruce found himself sharing a hospital ward with other boys with haemophilia, they would compare bleeds and number of stitches to see whose was worst. Kids today are no different, he says. They have to deal with reactions to ports, needle phobia, overcoming hurdles like school attendance. They can recognise better than anyone when they have a bleed; they’re already experts on living with haemophilia and they’ve earned the right to be collaborative partners in their care.

For that to succeed, there has to be honesty from the outset – even about issues that seem trivial to adults:

Empowerment goes hand in hand with self-advocacy but what seems to be lacking in haemophilia care is an effective group through which individuals and families can learn from one another. Social media offers an accessible way to share experiences and find support, but treatment centres could usefully develop a national self-advocacy model that ensures access for everyone. Such groups are far better run by parents, calling on specialist advice only when they need to tackle specific issues. The support that comes from common experience is invaluable, Bruce says.

His experience has left Bruce with a critical view of health services, not only of the actions of various professions but also of the medicalisation of care.

This criticism is rooted in the primacy of the child and here he sees the role of nurses as especially important. Haemophilia centres need nurses who can call on years of experience because they are the people who patients and families learn to trust. It follows that centres need to value and retain these experienced people. Bruce says he tried to be the kind of nurse who would recognise when someone needed comforting and would, no matter how busy he was, put an arm round their shoulder. It is almost old-fashioned nursing, he says, providing care in a fundamental way.

Not everyone is the same, of course. Some people want more intensive support, others independence.

The clearest distinction is between people with severe haemophilia, who are heavily reliant on the multidisciplinary team, and those with a moderate or mild disorder who seek help only when they think they need it. They demand little of the service, but health professionals recognise that individuals with a less severe bleeding disorder often fall between the gaps in care.

This is where the value of skilled nursing early in life is evident.

A successful nurse-patient relationship is one that survives well into adulthood. Bruce recently met the nurse, now an elderly lady, who looked after him as a child – he gave her a big hug.

That qualification about what was not being said returns matters to the present day. Bruce is frank about the relationship between patients and health professionals following the infected blood scandal. For those affected, the damage is severe and irrevocable.

And that is the way forward. Nurses should think about how to build more collaborative relationships with their patients – it is “not so much a repair job as a revolution job,” Bruce says. This will need respect from health professionals for what people have been through:

And it also means redressing the balance of power between patient and clinician:

The Infected Blood Inquiry is likely to be traumatic for everyone in the haemophilia community and there will be many wounds to heal. Hopefully, justice will be done. The good that will come from this will be a stronger voice for people with bleeding disorders and their families, and a more open and collaborative relationship with health professionals. For that we will thank Bruce and the many who, like him, have suffered and are suffering still.