For F****k sake now my dd doesnt have a paeditrician!!!! - bit long

[mummytopebs]

I am so angry in is unbelievable. DD has had a paeditrician since birth who quite frankly has done nothing, my gp referred her to a big childrens hospital around 2 years ago to check her immunity and she ws found not to have serious problems with that so referred back to original (useless) paeditrician. Anyway in October she started having worrying symptoms so got an emergency appt through choose and book at a different hospital and was subsequently seen by another paedtrician who said would take over her full care. Because of politics she had to be seen by a different one for her aspergers as this needed to be local. The last 5 weeks she has been having stomach aches, night sweats, tiredness and strange sores on her skin my gp just keeps saying he is baffled and he will write to her paeditrician for advice (has an appt 30 july). The Paeditrician has just rang and said cos she is not in our area it has been decided between herself and my gp that she cannot see dd anymore!!! So now she is left without a paeditrician and her appt on 30th July has been cancelled.

So because of politics my dd who has aspergers, learning difficulties, heart murmer, failure to thrive, chronic constipation,scarring on the brain and in the last 5 weeks unexplained tummy pains, weight loss, night sweats and bright red sores now has no one to see about it. I have spent half an hour crying withh dd telling me not to be sad mammy and wiping my tears away, and now quite frankly am pissed off - How can these professionals discuss this because of politics and area decide what to be done without consulting me!!!!!

Where do i go from here

Is it just ana rea thing?

Just asking becuase around here no asd cases see a PAed after2 years post DX anyway, to allow for new cases (Obv your child has other iossues)

DS3, quite markedly impaired and in an SNU, will be discharged in December after a year post DX.

Wonder if something like this is filtering into the decision?

Havent got a clue she was always seen at our local hospital but this closed down so we went further afield now it seems they dont want to see us - i think its all politics and not helping children at all

god how frustrating. think first port of call should be to ask your GP what the hell is going on to sort out referral to another paediatrician.

Have rang the gps surgery who have said the gp will make another referral to another paeditrician - do you ever get the feeling you are being fobbed off!!!! Wonder how long this one will take to come through

God that is dreadful mummytopebs, you must be so worried about your dd.

I can't really add any effective advice other than sometimes (unfortunately) it's a case of 'he who shouts loudest'.

I hope that you aren't waiting an age for another appointment.

sounds crazy - I wonder if PALS - patient advice and liaison service could help get this fixed ?

www.pals.nhs.uk/cmsContentView.aspx?ItemID=938

Pebs I would be inclined to ask for a direct referal to your nearest specialist childrens hospital rather than refering to your local hospital just to be messed around again.

If need be contact the hospital yourself & find the name of a suitable paed agree the referal yourself in principal & then just go back to your GP to do the paperwork.

This is perfectly acceptable if this is the specialist hospial for yr area.

Madsadlibrarian is right - complain to PALS and also to your MP.

That's simply not acceptable.

The paeditrician that she was with was from the best childrens hospital in the area (but apparently not my area) even though it was only 20 minutes away! I said what happened to choosing your own consultants and hospitals and was told it works for emergencys but not for long standing care. I am just so pissed off, if i havent heard from a new consultant in 1 week i will be ringing the gp back and kicking off - i am sick

that's absolutely jaw dropping that they can do this.

I would write to your mp, and ask what he would suggest considering the situation. I have heard they can help.

If this is a new condition surely it is not long standing care.
Contact your preferred hospital yourself, if they agree to take her your GP would ahve a hard job not refering.

Gp did refer in september for a new condition and paedtrician said she would take over her full care, but now all of a sudden she cant, which has left me without a peaditrician - 2 weeks before an appt! She has been seen by a paeditrician since birth and she is now 4 however a new condition arose in september hence emergency appt with new paeditrician who said she would take over her full care but now it seems she is not able to for long standing care (a bit late now).

I think i will go and see pals

Patient Choice extends to all areas of the NHS except Maternity and Mental Health Services - in these you have no choice who you are placed under the care of.

So fight to be seen by the Consulatnt you want.

Does your gp consider these problems to be trivial for some reason?! If not then he should be making an immediate referral not just asking for advice.

Have you considered taking your dd to the A&E department of a hospital with paediatricians after your dd has a particularly bad day? Won't help with long term care but at least you might get an idea of what is happening?

Appreciate this is a long shot. Hopefully new referral wont take long.

even if the second paed can't take over the full care, surely she can deal with the extra issues she has been having?!

So sorry to hear what you are going through, and angry on your behalf. I do hope you get somewhere soon.

Echo the previous posters - go to PALS - both the hopital one and the primary care one. If they want to bring politics into it tell them that as they (hospitals) are now being assessed on their ability to provide decent healthcare for people with learning difficulties (New CQC national indicator)what are they doing to ensure proper treatment - as it would appear in the case of your daughter they are clearly failing. You could also see if your local mencap would be willing to take up the fight for you to take some of the pressure off you.

Hi, sorry to hear what has happened to you and your dd. A previous poster was right-you need to shout loud and keep on at people, or you will be put to the bottom of the list of any future paeditrician.
See your GP in person, and ask him for the name of the Paed. he intends to refer your dd to. Tell him you want to see someone in the next couple of weeks, due to dds new symptoms,and cos he is not able to dx what is wrong with her.
Write to the Chief Exec. of your NHS and outline your situation and that you expect him to find a Pead. for your dd asap. Say you want a WRITTEN response within the next 14 days. CC the letter to the Complaints Dept of the hospital where the recent Pead. saw your dd and to your MP.,this way, eveyone can see who you have contacted, and hopefully be shamed into rectifying the situation.Good Luck.