mind the gap – NHS pain management services for childrenPosted: 12/04/2013
we met with a senior clinical psychologist on Wednesday to discuss what next for my daughter.
we did our best to differentiate between being reassured and being worried. that is, being reassured that the tests she has had (see category on diagnosis) have found no underlying ‘organic‘ cause for her pain, but worried that the pain is on-going and disabling. we agreed, again, that better pain management is a priority.
i was woken at 4 a.m. by my daughter crying out in pain in her sleep. she is unable to get out of bed, or sit up, or stand up without help. all of these things cause her to cry out in pain. paracetamol and ibuprofen help, but are insufficient.
the hospital where my daughter is being reviewed has no specialist pain service for children – the pain clinic only treats adults.
it gets worse.
it seems there are no specialist pain services for children in the whole of the eastern region of the UK. The British Pain Society maintains a list of paediatric pain services and clinics in the UK (pdf file). Great Ormond Street Hospital Pain Control Services is the nearest – though quite how anyone gets a child from the East in debilitating pain into central London to access the service is anyone’s guess. pain services across the UK are under pressure because of NHS reorganisation and funding cuts. Dr Rajesh Munglani reported on the impact of NHS reforms in Pain News Summer 2012 (Vol 10, Issue 2).
in the short-term, this is how it works. it’s Friday. sometime today, i will get a call from a consultant who has an interest in paediatric pain relief. he will see my daughter on Monday. we don’t know when, only that he is in surgery for most of the day (it is his job after all). he will make time to see her. it’s a huge relief to know that advice is within reach.
but is this how pain services for children at one of the UK’s leading hospitals should work?
mind the gap, kids.