some of the things that have been said…

‘we know the pain your daughter feels is real’

‘the pain is not in her head, it’s real’

‘there’s nothing wrong’

‘we don’t know why, but sometimes the body’s pain signals get turned up high, like the dial on a radio set to full volume’

‘i don’t like the distinction between functional and organic. there’s always a reason for pain’

‘anxiety worsens the pain’

‘are you worried about anything?’

‘returning to function makes the pain go away’

‘pain killers, in cases like these, don’t work’ (in my daughter’s case this is not true, pain killers most definitely help, but paracetamol and ibuprofen are sometimes insufficient)

‘giving attention to the pain makes it worse’

‘the gastro team can’t do anything more’

‘don’t question, it makes things worse’

‘we don’t have the resources here to answer your questions’

‘we will not support referral for further investigation’

‘she needs to live with the pain’

‘hypermobility has got nothing to do with it’ (without assessing my daughter)

‘even if her hypermobility was causing some dismotility [of the gut], we couldn’t do anything about it’

‘complex cases such as your daughter’s often fall between two stools’ (when i complained that we were being bounced backwards and forwards between the gastro team and our GP, while trying desperately to get advice on pain management)


2 Comments on “some of the things that have been said…”

  1. Ali says:

    Having followed your blog from the start, I wonder sadly that if this is the best the nhs can do, then it’s not much. What has also become apparent is the need for you, her parents, to be in charge of her care and treatment whilst not have the expertise to do so and without responses to your questions from most of the health professionals.

  2. thanks, Ali; i have no doubt whatsoever that this is about lack of resource within the NHS. it took three and more months for the hospital to admit it, but they do not have the resource to treat a ‘complex case’ such as my daughter’s (& that reminds me to add another comment to the list above). yet, they still ‘control’ my daughter’s ‘treatment’, refusing access to further opinion. it is important to note that we have not questioned the diagnosis of functional abdominal pain. we have wanted to know whether her case is typical in the presence of a number of red flags: continuous localised pain near the appendix; pain that wakes her at night; pain that is worsened by movement. they won’t answer our questions. they refuse to allow us go anywhere else for those answers. nightmare.

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