to think the hospital could get its act together

[needmorecoffee]

back in july/august dd saw 3 different surgeons for 3 different ops. I asked if they could all be done under one GA to reduce risk to dd. No problem.
Its now november. Got a date of Dec 5th for one, next March for the other and nothing for the really big op.
Have spent the whole week calling various secretarys to try and get this sorted and it still isn't.
FFS, why isn't a child with as many issues as dd under one keyworker? Why is it a parents job to chase surgeons all day?
If she has 3 GA's, not only is it risking her life but will cost the NHS fucking tousands in theatre time.
I'm angry and in tears at how shit the system is.
Feel like telling them all to go fark themselves.

[needmorecoffee]

bump

[ilove]

I would imagine it has more to do with th fact that each surgeon has their own "theatre days" and they are different...

[MadMarg]

How awful for you! I'd be furious too. Can your GP help you? Sometimes they are more responsive to a medical person, the secretaries are, anyway.

[needmorecoffee]

they all agreed to do it because all agreed GA's are a risk for dd as she is medically fragile.

[needmorecoffee]

will be trying them monday. Am stressed about this and stressed just caring for dd without things being made harder. Feel like cancelling all the ops and giving up
Maybe thats why her chances of making it till 10 are 50%. Cos hospitals try and kill sick children off!

[TheProvincialLady]

You could write to the chief executive of the hospital. Very sorry you are going through this, how stressful for you

[needmorecoffee]

i think this might be the straw that breaks the camel as it were. Especially as the respite carer didn't show up today.
I havea severely disabled child, why do all the services dealing with her have to make it harder and shittier than it already is?

[WobblyPig]

Depending on the ops, this could be technically very difficult to arrange.

[needmorecoffee]

they all said they would. One is botox, one replacing a tooth and the big one if fitting a G-tube (feeding tuvbethrough the stomach wall)

[lil]

You could have a word with the GP.

They are the gatekeeper and they have to fund the majority of your childs medical care. If you point out to him that this will cost him more than he's probably got allocated for your child, he might sort it. GPs of sick kids don't do much as the child is seen by the consultants, so get him to do some bloody admin work!!

[lilymolly]

Sounds really shit and really unfair, and I feel your pain, I really do, but tbh, from a clinical perspective, it sounds like a nightmare.

Different ops involve diff surgeons, in different theatre, different staff, different equipment, different days,different anaethsesis etc etc etc.

Not to mention the sterile draping of your dd, this could be difficult, and tbh she would be under a GA for a very long time sorting all that out, and would have less GA under 3 different procedures.

Saying that, if they promised to do all 3 together, they must have thought about all the consequences, and should at least try to accomodate you.

I agree try PAL

[TheProvincialLady]

The difficulty of the arrangements is not your problem anyway. There are managers to make those arrangements. Do complain.

[needmorecoffee]

this is the hospital where they tried to OD dd 12 months ago and I'm still waiting for thr written apology, where they didn't feed dd so we had to go to Tesco's (there's nowhere to cook) and still haven't apologised and where the nurses made dispariging remarks about dd's disability and where there are no hoists or lifting facilities or bathing facilities for children like dd. (that work)
If I had money I'd go private.

[WobblyPig]

Where is this hospital? Are there alternative units you could try. I wouldn't have thought the GP would have any influence over this. Have you spoken to the surgeon who has offered the earliest date to see whether he/she could speak to their colleagues no he/she has a date for your DD.

[yomellamoHelly]

No you're not! I had problems getting three different blood tests done in one hit to save ds some stress/pain and that doesn't compare to your situation.
Having refused to put him through that ordeal (so they knew I was serious) I ended up getting upset with the consultant I've known longest and she sorted it out. She's a reasonable person and sympathised with my argument.
FWIW we've got social services involved here and they keep saying they're the ones who will make sure everything's co-ordinated / communicated to everyone else etc..... (personally I don't think all my views are being thoroughly communicated but that's another matter). Do you have anyone like this? A two-pronged attack might be more effective.

[needmorecoffee]

when we're assigned a new social worker maybe I'll dump this in their lap
I am beyond stressed and in poor health so can't be dealing with this anymore.

[bonnycat]

I sympathise with you its bloody hard isnt it?
My child had OHS earlier in the year,she also has other medical issues and needed another different surgeon to be involved in the operation.
It took 9 months of to-ing and fro-ing between the two surgeons and their secretaries to get a date organised.
It was a nightmare for us as a family.
I have also spent many hours chasing up bloody flu/RSV jab appts and it really gets you down when you are already caring for a sick child.

[vis]

Dear Lil

"You could have a word with the GP.

They are the gatekeeper and they have to fund the majority of your childs medical care. If you point out to him that this will cost him more than he's probably got allocated for your child, he might sort it. GPs of sick kids don't do much as the child is seen by the consultants, so get him to do some bloody admin work!!
"

The Gp doesnt fund the operations.

The motivation for your Gp to get involved hence will not be money ( he or she does not benefit or loose for the no. of operations) BUT for the health of the child and the family, your gp is there to ensure the best is done- please go to your GP- explain what has happend;what was promised- ie one operation;and what the currentn situation is ie 2 dates.

Ask your Gp to write a letter ( and fax it ) directed to all three surgeons aswell as the anaesthtic head dept and the surgical dept and the compliants team for the hospital. - requesting a quick resolution to this matter due to the distress etc. You are more likely to get a result doing this than trying to chase people who may not have the power to get surgeons and other staff to operate on different days etc.

I hope this gets sorted for you since situation sounds really sh*t

[vis]

oh forgot to say that you should also copy this Gp letter with a compliant letter written by yourself again stating what hell you have been put thru etc They need to get some better systems in with dealing with complex issues like this......one thought I just had...do you have a paediatrician ? From past experience the consultant paeds has been the central key person in organising or encourgig communication.

[lil]

vis

I thought that not so long ago the system was changed so that all monies associated with a patient have to go thru their GP. Once a patient has an op, the hospital will in effect price up the work and send the bill to the Gp who has extra funding for all 'especially'sick patients on his list. However cos this job is done badly in general, the hospitals don't always get the right amount hence overspending by the hospital as extra expenses seem to be forgotten (drugs and complications). I was told this by a surgeon who was trying to explain how my sick child was funded as she goes to one of the big London hospitals.

The specialist hospitals also get extra funding because of course their patients are extra sick and need expensive procedures, but I'm sure the GPs have to see the majority of the monies.

Anyone here a GP?

[vis]

thanks lil - i don't think that is exactly right. The Gps get extra money to provide Gp services to special groups of patients that are deemed more complicated and need more GP time. The money to the Gp comes from the primary care trusts ( pct). There is a seperate pot of money allocated to hospitals etc to provide care to patients. The GP does not pay the hospitals. The surgeon is right in saying that the hospitals do more for the patients than they are paid for ( but that is not gp fault)....would be happy for anyone to clarify further....hope needmorecoffee - you have some answers.

[remote]

Poor you - you sound like you are at the end of your tether.

I know someone else suggested it but your PCT will have a PALS (patient advice and liaison service). As they are not part of the hospital trust, they will be able to help without any in-house bias.

If and when you are feeling up to it, I recommend contacting them. If you ggogle your area then PCT - ie our is West Sussex PCT, you should find a number.

Sending hugs to you and your dd

[lil]

vis that would mean my GP is laughing then as I never see him because I go to the hospital every few months. I don't cost him anything extra, less in fact than others!

[pyjamarama]

YANBU.
Do you have a good relationship with the gastro surgeon, and do you have any further appts with him/her? IME the best thing to do would be to ask him/her to schedule the feeding tube op, and arrange for junior docs (consultants shouldn't be needed for the tooth and botox) from the other two teams to pop into the theatre for the other procedures. This is something I have been involved with on several occasions. Ditto getting the PALS team involved; although the hospital PALS team would be better as they are more likely to have a working relationship with the teams involved.