The sweeping changes and cuts brought in by the coalition government affect those of us who are sick and disabled earlier than those not yet sick or disabled; we're a bit like the canaries miners used to take underground as they were more sensitive to the lack of oxygen and toxic gases than humans, if the canary passed out it was time to run for safety. In this case sick and disabled people are the little yellow birds the rest of the population should be watching closely to see the impact of the changes to the NHS, welfare, social services and all our vital public services have on us as a salutary warning of things to come for everyone.
Yesterday, after much dithering about a dislocation that had remained stubbornly dislocated for about 10 days and concerns about nerve damage or stress fractures, I finally conceeded I might need medical attention and phoned my rheumatologist's secretary to see what my doctor advised. You can always tell a good, well liked doctor by the quality and manner of their staff - typically if the secretary is friendly and helpful it's because the doctor they are working for encourages that kind of atmosphere. My rheumatologist is lovely, as are his staff. I explained the issues to the secretary, who assured me she'd make some enquiries and left me a phone message an hour or so later to explain what she'd done and that a specialist nurse would phone me to discuss the situation. So far, so impressive.
Until the specialist nurse phoned. The nurse was very nice and obviously keen to help, but I knew when the advice started with the words "It's because of the politics" that things weren't going to go according to plan. The nurse advised me to stay away from A&E, which is usually the most sensible advice for those with long term chronic conditions, but in this instance the boundaries are blurred as to what's the most appropriate way to access care. Instead, 'because of the politics' I was told to go to my GP and get him to examine my wrist, then refer me for an x-ray as an outpatient. I was then to attend the local hospital for that x-ray, wait for the results to be returned to my GP, then my GP was to refer me on to orthopaedics. So that's likely to add up to 2 appointments with my GP, a very confused GP wondering why it's suddenly his job to rule fractures in or out and when he last had to diagnose a fracture, my GP spending time on paperwork and referrals, then being sent an x-ray far outside his field of expertise to decide on an appropriate course of action and then more paperwork and referrals.
At this point in the conversation I knew what would happen if I took the problem to my GP. He'll look at me a bit blankly, probably scratch his head, then he'll ask me what I did to my wrist and what I believe the problem to be. He won't examine me as it's utterly pointless and will ask me where and who I need to be referred to. Weighing it up yesterday afternoon I decided that quite frankly even if my wrist has stress fractured, or if there is nerve damage, the amount of spoons I'd have to expend on all those trips to the GP and hospital would be far better spent ignoring the problem and staying at home with my wrist braced healing.
I saw my rheumatologist for the first time in December, when, because of his concerns about the severity of my condition he put me down for three monthly reviews, meaning I should be seen by the consultant some time this month. Except, they're running behind. Approximately six months behind. I asked whether this would mean I was seen six months after the initial appointment or nine. Apparently there's no way to know but it will probably be sometime between the two, so I'm looking at not seeing my rheumatologist until some time later in the summer. Which seems both a shame for me personally and the NHS as a face to face appointment with my rheumatologist might avoid the need for any x-rays or multiple referrals to other specialities with no experience of Ehlers Danlos Syndrome. It's fair to say that rheumatology was struggling under the previous New Labour government as their obsession with targets also meant an obsession with 'cures' and so surgical specialities enjoyed the increased finances while the more time demanding medical specialties sighed and tried to make the best of the situation for their typically more sick, disabled and dependent patients. However, despite those difficulties, last time I was put on three monthly reviews by rheumatology I was seen fairly close to that three month target, which kept me from spiralling off to other expensive referrals and specialities.
But, "It's the politics" innit. And like the canaries of old we sick and disabled people are frantically flapping and tweeting about, hoping desperately that those of you not yet sick or disabled will see and hear us before we keel over and the public realise it's not just that it's too late for us, it's too late for you too.
Update: 0918 I'm publishing below the insight a frontline GP gives in my comments section into the reasons for these delays
"Hi there BG.
If anyone's trying to suggest to you this present difficulty is down to GP commissioning they're telling monster porkies. GPs won't be commissioning for at least 12 months yet. The pCTs carry on as normal til then (at least in theory) and GP consortia haven't even begun to look at their service specs for any clinical areas yet. Most of them have barely formed. The delay is all at the feet of Mr Lansley and your present trusts, PCT and Hospital. The targets for waiting times have been abolished. The "ringfenced" NHS budget is anything but, and if your Hospital Trust is anything like two of ours locally, they're looking at "efficiency savings" of anything upwards of 10% (or 20 plus million smackers-- each), and so they start playing bingo with the appointment system-- refusing to cover staff absences with locums, cancelling clinics left right and centre, and once you've cancelled a clinic the *minimum* the appointments will be deferred is another 4-6 months because of the way the system "works".
But of course none of that matters when you've got the massive smokescreen of "It's not us it's the GP Commissioners, honest!" And especilaly so when the Meeja buy into the lie hook line and sinker.
Yours in despair,
Doc J "
Update: 1402 Home from A&E with a plaster cast and broken scaphoid. Thanks to all the fantastic staff at Wirral Hospital's A&E who were lovely & had me seen, treated & discharged in around 3 hours. Oh and for listening to my radio interview this morning!