Our son was born last November with a cleft lip and palate. Since then we have learned a lot. We know how to squeeze milk rhythmically into his mouth; massage scar tissue and deliver pain medications with the minimum of fuss. We know how to touch on the issue early in conversation so that people don’t skirt awkwardly round it or move away in embarrassment at a baby with unusual features. However it would be fair to say that we are still learning to be ‘parents of a patient’—a role which has been explored with a great deal of sensitivity in now classic sociology by Strong and by Baruch (and no doubt by others).
While these authors explored the delicate dance of deference and advocacy performed by parents of sick children in the clinic, they were writing before ‘patient involvement’ became a feature of the health landscape. Parents in the 1970s were not routinely asked to evaluate and reflect on the care received by their children. They were not encouraged to take part in advocacy for the condition. They were not invited to debate research priorities and outcomes. The involvement of patients and their representatives in these areas is to be welcomed. But it brings new questions and pressures that I can now reflect on in very personal terms.
Firstly, the issue of Privacy: There is a good deal of solace to be had from sharing stories with other families and useful information on practical issues like feeding and surgery. But we surely should be careful when we’re sharing someone else’s story. In my own case I have decided not to put information about my children on Facebook, avoiding making family photos part of some corporate empire. For consistency then should I really be considering telling the story of our son’s diagnosis and treatment on ‘Healthtalkonline’ [http://www.healthtalkonline.org] – a site posting interviews about different conditions in the name of patient and professional education?
Next, there is the idea of living with uncertainty: It’s nice to be asked what you think are future research priorities, but uncomfortable sharing clinicians’ uncertainty about best care now. A recent initiative by the James Lind Alliance explored things that families and clinicians thought needed more research. The final list included:
What is the best protocol for primary repair of both the lip and palate, including technique/timing and sequence?
What are the educational, employment and personal (eg relationships) outcomes for individuals with a cleft of the lip and/or palate during childhood, adolescence and in the long term?
These had the unwelcome effect for me of highlighting continued disagreement about the best surgical management and the long-term issues surrounding the condition. I would sleep a lot better if I thought our clinical team had clearer evidence on these issues and if I hadn’t read the list.
There is the issue of outcomes: I recently attended a meeting of professionals, patients and families to discuss appropriate outcomes for research and audit of cleft care. During the day it became clear that for all the talk of ‘patient centred outcomes’ it is very difficult to merge different perspectives. Families suggested outcomes closer to what sociologists understand as ‘the lifeworld’. After surgery and speech therapy, is someone comfortable talking on the phone or in public? Are people happy with the way they look, and confident in facing the world? However professionals want outcomes that can be measured in controlled conditions. They investigate intonation in the language lab. Or the symmetry of the reconstructed nose viewed from below. Parents take a long view, worrying about how their children will look and feel aged 21. Surgeons’ careers are perhaps 30 years: they need outcomes that can be investigated in the short term.
After our son’s last surgery I felt just how far NHS evaluation might be from our concerns, when we were asked to complete a questionnaire including the controversial ‘family and friends test’ with the question of ‘how likely are you to recommend our ward/A&E department to friends and family if they needed similar care or treatment’? This questionnaire is now used to evaluate wards, supposedly providing a sensitive indicator of their effectiveness that can be compared across institutions and over time. From a very personal perspective however, this question is stupid. My baby had just had quite extensive surgery. I fervently hope no friends and family are ever in this situation. If they were, like us, they’d be unlikely to have any choice of hospital. When I was filling in the questionnaire I just wanted to go home, yet at the time I felt a duty to spend 20 minutes completing the survey, in case we could improve care for other children in the future. Next time I’ll just wave goodbye and leave outcomes to others.