I could hear the screaming from my outpatient clinic room. As I went outside the clinic staff looked disapprovingly at the frustrated toddler and his exhausted mum. And as I helped push the buggy and steer her older child through the door I could see things were not good. Pale and thin, Marifa* was a new patient in our gastroenterology department. Her GP had been really worried about her. ‘She won’t see a male doctor and we don’t have a female gastroenterologist locally – please could you see her?’.
Marifa had waited an extra 2 weeks for this appointment and left home at 6am, taking two buses and meeting angry glares on arrival from patients in the waiting room as her two children expressed their views. It was hard to get a history with them interrupting. But it was clear she was probably in her first attack of severe colitis – with 5kg weight loss, bloody diarrhoea countless times day and night and unable to eat due to pain. Whilst I would dearly have loved to get a biopsy, she didn’t want her son to witness a rectal examination.
As I explained the situation, and the need for admission, she started to cry. ‘But I can’t leave the children – their Dad does shift work and it’s half term – there’s no-one to look after them’. Not wanting to upset her, I needed her to understand the risk whilst I realised that she actually felt she had no choice.
So between Marifa and I we had to make a plan for sub-optimal care, with additional delays due to the need for an all-female team for her colonoscopy, and her having to cancel due to the older child vomiting at school.
Miraculously she did not end up with toxic megacolon and an urgent colectomy – or worse. However, follow up appointments were haphazard. As a consequence, she reappeared with a further flare of colitis after stopping her medication when she fell pregnant – the wrong thing to do, but without adequate pre-conception counselling an almost universal maternal reaction.
Many women bear the brunt of having to balance their own health needs against the needs of their families. This is not something we should accept as inevitable – there are things we could do. We should have the flexibility to arrange clinic appointment times that are during school hours if needed, and offer someone to sit with the child in clinic if we can’t. Teams where women are under-represented as consultants – like my own – should work to change this urgently. Whilst some doctors feel uncomfortable with allowing patients to choose by gender, this is an important part of some women’s culture and religion. For others, embarrassment about intimate examination by a doctor of a different gender identity may deter them from seeking help. The choice should be there for everyone. The specific issues of navigating pregnancy safely with chronic illness should be prioritised in funding. There is an implicit assumption that it is up to people like Marifa to bridge the gap between their needs and what the NHS provides. I don’t agree – it is up to us, as healthcare providers, to provide the best care we can for all our patients. At the moment we are letting down Marifa, and all our patients like her.
*Name has been changed to protect the patient’s identity
Helen Fidler is a consultant gastroenterologist and a member of the BMA consultants committee