Expensive Years
A few days ago I read this heartbreaking post from Achelois. She and her daughter (D) both have EDS, and they are having a particularly difficult time with various medical issues. D is still just a teenager and is finding the pressures of university overwhelming to her more fragile, bendy body. Unfortunately D has been denied access to the specialist adolescent pain management course held in Bath. It's the only course of it's kind in the UK so patients must travel outside their areas.Now, politicians might tell you this is easy to do, and perhaps they'd even quote some relevant legislation to prove how they introduced such access, but in practice something different happens. Each individual Primary Care Trust is responsible for paying the cost of out of area referrals, and it is more expensive for them to fund referrals out of their own area than in. This leads to a post code lottery where some PCT's will fund some out of area treatments and some won't. The rationale is supposed to be that the PCT only has to fund out of area treatment if there isn't the relevant expertise within the PCT area.
Some PCT's, such as my own, are excellent at funding out of area referrals, and so long as they are backed up by sound reasons from the referring doctor (usually a GP) the funding goes through automatically without the patient having to do anything further. However, in some PCT's the opposite seems true, no matter how valid the reasons for an out of area referral the PCT will obstruct it. Usually by spending money on sending the patient to various referrals within the area, all with consultants who lack the vital area of expertise but who are consultants in the same overall branch of medicine. The need to spend money on refusing to spend money is typical the kind of bureaucratic nonsense bringing the NHS to it's knees and costing us the taxpayer dearly.
Which is nowhere near the cost to a 19 year old girl living with so much pain that inside she feels like dying. Attending a pain management course would change D's life. Sure, it's possible to learn all the skills for yourself, but that can take years; years out of education, years out of employment, years being supported by benefits. Expensive years. All for the sake of saving the money a 3 week course would cost.
3 comments:
Thank you BG. Tears in my eyes as I know you understand.
Sadly this is all too often the case, my own PCT will not consider funding anything other than their usual PT/OT methods of treatment too.
Perhaps this lady can get her story in the papers? The publicity may well bring offers of financial and/or medical support whilst also publicising EDS and the strain it puts on us too? It's a glimmer of hope if nothing else. Even more essential now Prof Bird is retiring and hopefully someone will be filling the gap in EDS experts really soon.
My heart goes out to this girl, I'm fortunate in that my pain is not so bad as to be untreatable for me. I pray things improve for them both.
Absolutely ridiculous. And it's terrible to be across the world and feel so helpless.
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