who cares?

my daughter has been in near constant pain since January – pain that woke her night, that remained localised near her appendix; pain that was worsened by movement and meant she could not sit up or stand up without help. she was diagnosed as likely having functional abdominal pain in February.

in March, perhaps the most stressful point in all of this, i took a call from an associate member of the gastro team who told me:

1) gastroenterology could do nothing for my daughter – the pain was functional, nothing was wrong;

2) the hospital psychology team were available to work with us if we wanted them to;

3) they could refer my daughter as an in-patient to a centre where pain was treated as secondary to emotional or physical abuse.

i was shaking after the call ended. i had tried to get advice on pain management from the gastro team – referral to a pain clinic, a TENs machine – anything that would help my daughter cope. but nothing – NOTHING – was forthcoming. this was bad enough, but then for it to be inferred that her pain was secondary to emotional or physical abuse was dreadful. it felt as if we were being sucked into some Kafkaesque nightmare.

my daughter was discharged from hospital with no other pain medication than paracetamol and ibuprofen; no follow-up appointment with the gastro team was offered. any interest in her on-going condition stopped at the point of discharge. we were dropped. we went back to our GP. she said she was not an expert in abdominal issues and referred us back to the gastro team. the gastro team refused to engage further, even though they had acknowledged that my daughter’s pain was severe. they went on to say that they would not support referral if we wanted a second opinion.

i think the term is stonewalled. the weeks went by and the weeks by and my daughter’s condition did not improve.

then, towards the end of March, my daughter was seen by a rheumatologist for a completely unrelated issue – this takes the form of a low-key annual review in Norwich. my daughter has hypermobility, and has been treated in the past for complex regional pain syndrome after a bad fall in a roller hockey tournament. the rheumatologist said she sees a lot of hypermobile children who have painful episodes; hypermobile children can be more sensitive to pain. she thought the abdominal pain was likely neuropathic, but that she was no expert in abdominal issues, and said the gastro team were best for that. she prescribed Amitriptyline as a muscle relaxant and to help ease the pain.

the rheumatologist called again last week and offered my daughter an appointment first thing in the morning if we could get to Norwich. we were there with time to spare.

she prescribed Gabapentin – and since then, my daughter has been completely transformed; it is as if something has switched inside her. she is not pain-free, but the pain is greatly reduced.

i am frankly very dissatisfied with the care provided to my daughter at our local hospital – that the gastro team could not, in fact did not, advise on pain relief beggars belief. they are the experts in abdominal pain. they see it time and time and time again. not intervening consigns these children to months of unnecessary pain.

i do not think this is acceptable.

i think it was my daughter’s very great misfortune not to have been seen in Norwich from the outset.