Yesterday, we had a hospital appointment. The carpark was full, so we pulled into the very last twenty-minutes-only-no-longer-we-don't-care-if-you-have-a-blue-badge-and-it-takes-you-twenty-minutes-to-get-out-of-the-car slot and hoped for the best. We unloaded, went up in the lift, and fought our way through outpatients to reach reception, where we were greeted by name and invited to take a seat. Three minutes later, the consultant came to us, we followed him to his room, had an examination and a quick treatment, and were out of the door with supplies, instructions for the future, and smiles all round. Back down to the bus via the cafe, and on our way again within 30 minutes. Excellent.
Today, we had two hospital appointments. A different hospital, two girls with two different doctors but the same speciality; policy having prevented one child being referred to our surgeon of choice despite her two sisters seeing him at the time of first referral.
We arrived in good time, had a choice of several parking spaces (almost unheard of!), unloaded and presented ourselves at outpatients. Where I was handed an x-ray request for one child. I asked about the other child's and "the doctors haven't looked at all the notes yet". When I pointed out that I really didn't want to have to queue in x-ray for an hour for one child, then come back, collect the next x-ray form, queue in x-ray for another hour, the receptionist looked confused, but invited me to take a seat in the main waiting room until the second x-ray form was ready. It's never a good thing when you turn up for an early afternoon appointment and there are already no seats in the waiting room. So we stood, and paced, and pottered for an hour, at which point I went back to the receptionist. I asked her whether, if the second child turned out not to need an x-ray at all, she would be told this, in which case we could simply go and get the first x-ray done.
"Oh, if you don't need an x-ray they'll just call you through." I pointed out this wouldn't be terribly helpful, as the second child's appointment was an hour after the first child's appointment, and as we could then be waiting two hours only to have to go and get an x-ray for the first child after all. She looked confused, but disappeared, returning five minutes later with a nice pink x-ray form.
Round to x-ray, by now already late for the first appointment, but with a nice note on the board informing us that all clinics were now running an hour late anyway. I hand over the pink slips, and am invited to take a seat in waiting area two. We arrive at waiting area two, which is the children's waiting area, where we make the delightful discovery that "improvements" to the waiting area mean it is now no longer possible for any child in a wheelchair to access the children's toys or books. We line up against the wall, disgruntled, and Mog spends the next twenty minutes kicking the child lined up against the new partition wall opposite her. Joy.
A clued in x-ray technician arrives, and views the stack of disabled children waiting for x-rays; the doctors' decisions not to review the notes until halfway through the clinic having created a beautiful backlog in the x-ray department. After checking with me that the girls really truly won't be able to stand for their x-rays, she takes pity on us and we skip the queue. Hurrah. I avoid the other parents' eyes as we slip into the room.
Two girls taking it in turns to strip down whilst I carry them about wearing a giant lead apron. We arrange them on an x-ray chair, I arrange myself out of the shot, the machine whirrs and clicks, and we repeat the process with the next child.
Eventually we are finished with the x-rays, and we move back to outpatients to wait for the doctors.
Still standing room only; there's a baby clinic running and an adolescent girls with scoliosis clinic, and the usual stack of more generally wonky children. Finally Mog's name is called and we are escorted through the waiting room and into a consulting room. Except that we aren't; the doctor takes one look at the broom cupboard he has to work with, and takes over a larger room next door with no computer. He disappears into the room next door to check the x-rays, and a nurse comes into the room very annoyed as this is her baby clinic room and she now can't access it. Who decided the baby clinic should have the largest consulting room and the doctor seeing all the children with wheelchairs should have the broom cupboard? Surely by their very nature babies take up less space?
The doctor returns, and squirms his way along Mog's spine. He says it's fine. I say it's worse than it was, that she is having a lot of pain and ridiculous amounts of spasm, that it is taking two of us to fold her into her wheelchair in the morning and that we are having to knock her out with diazepam at times. He tells me she needs a proper wheelchair, then looks at the wheelchair she has and agrees it is a proper wheelchair. I point out she has warped it from the force of her spasm, he agrees, and tries to say goodbye. I ask him what we are going to do, he says we don't need to do anything. I ask him about the pain and the spasm and the suffering, and he says she doesn't need surgery. I reply she wouldn't be having surgery anyway, but ask him what we should do instead. Talk to the neurosurgeon about a baclofen pump, apparently, but there are funding issues so she probably won't qualify. But she doesn't see a neurosurgeon. Oh, well talk to her neurologist. But we aren't seeing him until June. Well talk to him in June and ask him to refer her. But what do we do until June? Oh, keep giving her the diazepam. But that knocks her out and means we can't give her her emergency seizure meds. Oh yes, well, never mind. We'll see you in a year, you speak to your physiotherapist, now goodbye. And the doctor walks out.
I pack up, reinsert Mog into her wheelchair somehow, reconnect her feed, and vacate the room. This whole conversation has been listened to by another doctor who does not introduce herself or speak at all. At no point has anyone made eye contact with Mog or talked directly to her, or acknowledged that pain, screaming, spasm and changing body shape might in any way be anything we might want to treat somehow. And throughout the whole process the baby clinic nurse has had her face glued to the glass pane in the door, scowling at us to hurry.
We return to the waiting room, where complete strangers take one look at my face and rush to offer me their seats. I am too angry to sit down; we have been waiting for this appointment since September, I have not been given a moment to discuss any possible ideas for treatment - even if my ideas were barking mad and totally inappropriate I would have appreciated the chance to mention them. We've missed an afternoon of school and caused Mog more spasm during the x-rays and examination and all so the doctors can walk away and tick a box somewhere which says "child seen".
So we wait, and pace, and finally give in and sit down. Two hours after her appointment time, Little Fish's name is called and we see her surgeon. He sits us all down in his room, pulls up her x-ray from last year to show me, and then puts this years' x-ray next to it. It doesn't take a medical mind to see there's a significant difference. He measures the angle, more to humour me than for any purpose of his own; last year it was 19 degrees and this year it is 26. Not a huge difference. And less than Mog's. But significant and he thinks it will cause problems. He strongly suspects Little Fish will need surgery - in fact it is as good as stated that surgery is inevitable; it is simply a question of delaying it as long as possible. The earlier she has her surgery, the shorter she will be as an adult. So, he will refer her to the orthotics clinic and we will take her to be measured and then fitted with a body brace.
He's a busy man, his clinic is running two hours late, but he spares a few minutes to say hello to Mog, who he has known since she was a baby. He dictates his letter in front of us to ensure he has the correct details for her various doctors and therapists. And then he escorts us all back to the waiting room with a smile. Total time taken in consultation, probably not much more than Mog's. Total time spent during that consultation actually speaking to us; the whole lot.
So now Little Fish needs a brace, which will probably impact her ability to self propel. Not that this matters much at home at the moment, since her wheelchair is still out of action. Otto Bock Minny tyres are £149 each. The chap who is sourcing them is so outraged at this that he is doing his best to find off-brand replacements, but this means I need to send him the wheels from her chair. And Otto Bock Minny wheels are not quick release. Anyone got a spanner?
And Mog, well, apparently Mog just needs to go into cold storage until June, and then back into storage until however long after June it'll take for one doctor to refer to another doctor. And then she also needs to stop costing the NHS money.
So how much do you think you are worth
Will anyone stand up and say?
Would you say that your life was worth nothing
Until Someone was willing to pay? *
PS - and although I reconnected Mog, I failed to switch her feed back on. A fact which I only discovered at 8PM. So it won't finish until gone midnight. Oh - and did I mention the fact she isn't tolerating it very well any more? Finally spoke to the dietician this morning, and she says there's nothing else left to try.
And as I write this, my upstairs neighbours have begun an evening of DIY - hammering and clattering about. I realise that as Mog's feed's still running I'm not actually in bed (it's after 10 at night), but they don't know that...
*thank you, G K
Can you not ask for a second opinion for Mog from LF's doctor?? If not, why not? And why can't life be that simple? But I guess you need answers now...
I dont understand...I dont suppose you do and I am Darn sure Mog doesnt!
You do have the right to ask for a second oppinion and you do have the right to request the GP refers her to your surgeon of choice.
All of this does not help the fact that you have waited 5 months to be faced with a total ignoramous!
I am put in mind of Jonathan;s surgeon who only started actually talking to me when I yelled at him to sit down and explain to me why he had changed his plan! And then again when I told him I didnt care if he had to walk on water to get back to Southampton he was going to explain what his plan for Jonathan's treatement was.
Maybe this guy just needs to realise he is not anywhere above you or Mog and actually works for you and will put Mog's needs first!
ARGHHHH I am so angry for you!
Hugs to you on LFs problems too. In my prayers.
OOH! I am so angry! Poor Mog. Can't you have her seen by LF,s doctor. the other one sounds like one I'd rather not have do surgery on my child anyhow!
Baclophen pump sounds helpful. Alicia is on delsium sodeium caps and have made ever so much difference. I can actually get her wrist and hand splints on now!
SO angry for you. I would really like to write what I think here but think you might get offended about my language!
The whole 'wait until June' thing is beyond belief.
ok, well, we have totally experienced these kinds of visits, and they stink!!!
that being said, you need to ask for a referral to another specialist. don't take "no" for an answer. you might have to travel further, but small price to meet a good doctor.
(and you probably already know this!)
I do know that baclophen is sometimes given orally. Perhaps your general practitioner can help you search that out.
Praying that Mog has better days!
I'm so sorry, Tia. Really am. Choking on sobs. Lord Jesus, justice for Mog and for all our kids! You're an amazing Advocate before a benevolent Judge, her Father--case is clinched.
Love to you, S
Not much new to say-other than what's been said already.--I think I'd ask for a different Dr. for Mog.-That is horrible.
GRRRR... I'm go upset for you and Mog I can't type! Praying that you will be able to get a referal or something so that Mog can been seen by a doctor who cares and will take the needed steps to find a treatment that will help.
Hugs & Prayers!!
I am reduced to swearing at said doctor from several thousand miles away, which of course doesn't help at all. Wish we could help in some way. Will pray. Keep on fighting. We love you, Mog and Little Fish, and so do so many many people, even if this ----- doctor couldn't care less.
Stated with your customary articulacy Tia! Your blog should be compulsory reading for doctors in training IMHO.
Email the neurologist or ask your comunity nurse to do it for you (which one is it?). If that doesn't work let me know
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