Wednesday, March 09, 2011

"It's the politics" Innit.

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!

13 comments:

Carl said...

Keep up the fight!

JuliaM said...

Is it really 'because of the politics' or is it because the NHS is a massive, monolithic, government bureaucracy which is harder to turn quickly than a supertanker and a lot of the staff are dedicated not to their 'mission statement' but to ensuring their own little empires continue to grow?

Romi said...

Good that they were able to do something, once you finally went to see them!
You're spot on with the Budgies!
It's a fearful time for the sick and disabled and those who are fit and well would do well to remember life changes in the blink of an eye.

BenefitScroungingScum said...

JuliaM: It's certainly a mix of politics and the problems with bureaucracy. However, in all my years as NHS patient I can't think of a single doctor who was focused on empire building not patient care. That's not to say I've always seen good doctors, far from it, but those who were incompetent would have been so whatever the system.
This is a direct result of the move to GP commissioning. In the past what would have been likely to happen was either an early appointment with the consultant rheumatologist or that I'd be told to go to A&E (where if I seek treatment I'll end up anyway) A&E would do the x-ray and any referrals on/treatment. The rheumatologist would perhaps write a note for A&E or ensure they were available for the A&E doctors to consult in some way.

Doctor Jest said...

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

Oya's Daughter said...

I have no idea who or what is to blame for this, but whatever is going on, it's bonkers. I have a specialist hospital waiting on me to come see them before my symptoms start getting worse/destroying internal organs, but I can't get there yet. Why? Because I have to convince my GP I have the disease, then he has to convince the Local Trust that if they can't treat it, they had best let me see someone who can, even if it isn't the cheap option.

Hurrah.

I do however think that there were a lot of GPs going to have several stiff drinks when they realised they are about to become gatekeepers, not doctors. I doubt that's what they put themselves into debt at uni for.

I'll have my gasmask in purple, ta.

Emma said...

right, and, as always, you say it all alot better than I could! The budgies analogy is perfect, I feel like I spend all my spare spoons warning my healthy friends only to feel they really dont see what this means for them too, they sympathise thinking "it wont turn out that bad, they wouldnt do over every disabled person, and even if they do the working people will be ok" and I feel nearly as worried for them as I do for myself. All the best with the dislocation, can totally sympathise, also with the situation, the nhs spend a FORTUNE purely on referals for me which are to the wrong doc or specialist, I have to hassle my gp nearly every week with a shoppinglist of stuff my specialist should be doing but I only see him once a year and he mostly just shrugs at my questions and says "you've got eds" as if that is his ultimate get-out-of-work card. The first time I saw him I had paid to see him privately, out of despiration to see a doc when both my knees failed at once, and refused to get better... turns out I was paying to see the same doc I was due to see by referal 3 MONTHS after the mysterious knee failing, and at both appointments inc the one costing £300 in the fancy hosp with merks outside in a row and free coffee served by nurses inside he shurgged and said "you have eds" in response. THEN I saw him about my rapidly worsening scoliosis which my gp had seen a visable worsening of and was very concerned that I be seen by a scoliosis clinic the specialist actually said to me "whats the point? .. we can DO anything" that was almost a year ago now under my own spoons I found out more about my scoliosis and my health and it turns out I probably have chiari malformation, which means there is something they can do, AND if they dont operate I could die. His shrugging has become a symbol to me of all this, its heartbreaking because it really doesnt have to be this way :(

Emma said...

I typo-ed, ment to say the doc said "we CANT DO anything" not "we can.." x

Oya's Daughter said...

Dang Emma...no words. I can open open a can of spiritual whoopass and hope it brains someone between the eyes for you.

Maggie said...

Just wanted to say thank you for all the effort you have put in to The Broken of Britain. There's not a lot that I can do at present to campaign, but I'm trying to re-Twit and Twitter your posts when I can.

I have ME/CFS, so am worried about losing DLA and Motability car, but am now getting my old age pension, so am grateful that I won't have to go through the WCA thing. I worry about my friends who are likely to lose their benefits after a year if their partner is working. Without my Incapacity Benefit we would really have struggled over the 19 years I have been ill and disabled. The insurance companies must be rubbing their hot little hands together over the thought that those in work will be more likely to go for PHI and so on. I despair of this country these days.

RockHorse said...

BG: Glad that A&E sorted you out swiftly - I can see A&E departments seeing their caseloads increasing as more people just go there rather than face the run-around of attempting to get referrals and appointments.

When my Pain Magician left me in the care of the recovery team, after performing a Lumbar Spinal Epidural, he departed with a cheery "Right, keep a note of any changes and I'll see you in about a month's time." Two days later, an appointment letter arrived with a date at the end of September. HIS wishes to see me about now (and my wish to see him) have been ignored or over-ruled so one of the GP team at my local health centre is writing to ask why and request an earlier appointment. And she's going to have another go at banging her head against the wall that is the area referrals service to get me referred (for another purpose) to a clinc in another Trust's area...

@Emma: some love is all I can send you, so *LOVE*

xJ

Nicijess said...

It makes me want to weep reading these, partly for yourselves, partly for myself and partly for the rest of the country. I can't even get the rheumatologist who I have seen only twice since I was finally diagnosed at 28 with HMS to admit I have EDS, although I clearly have all the symptoms. I was sent out of his room with a well you have hypermobility syndrome, bye... attitude and no idea of what it was or how it could be treated. Further personal research led me to the conclusion I have EDS type 3 but he point blank and arrogantly refuses not only to acknowledge that but refuses to see me again as there is nothing else he could do for me. I was put on the waiting list for wheelchair services, but after a year went ahead and bought one on my motability. When my appointment we through four and a half years later it was for a manual chair which I am unable to self propel (shoulders are gone you know...) Now, about 4 months after the end of my motability contract the batteries on my wheelchair have gone, social services say they can't help as it is a privately owned wheelchair (cant even get a ramp into the house am bed bound most of the time) and they seem unprepared to refer me for another appointment to wheelchair services (which after a 4 year wait before I am hardly surprised) so now I am more or less trapped in my home, until I can save up my mobility payments enough to fork out in excess of £300.00 for new batteries for my chair. It's no ones responsibility, but now they are talking about reviewing the dla, I had finally got acknowledged as an ongoing payment, not needing review....
Ho hum, glad they can't take my internet away, so I can still escape this way.
Hope your wrist gets better soon BG,
Nici xxx

e said...

I hope your wrist is feeling better. With all of its shortcomings, your NHS is still better than our crumbling and fractured system in which everything is too expensive and insurers have people by the proverbial shorthairs, and lack of insurance means lack of access to quality care.

Disabled persons and those with chronic conditions often cannot afford insurance and so they worsen. There is a two-year gap between disability benefit and getting on Medicare. Medicaid requires income limits, so those who make too much for Medicaid and not enough to afford their own insurance are stuck without alternatives. You're still better off with the NHS than we are across the pond, and I am not making light of your problems, either.