Do you trust the professionals?

[newname0601]

Yes or no?

I trust well less than half of those involved in ds's care and education. Not good is it. Most seem to talk bollox and seem to forget who my ds is and seemingly talk about a different child.

Most medical consultants yes ( except cardiologist who is an ass).Nurses, junior docs, registrars - no way. Luuk is way too complicated for me to trust them. Educationally - no. None have the skills necessaary for me to trust them.

xx

like shaz, most of the consultants, yes. We've been seeing them for years and they know dd3 well and know better than to let us see their registrars who are usually clueless. Most of the therapists, yes, again have been involved with dd3 for years. Sensory impairment service, yes definitely, again involved for years and have been an absolute sanity saver through the tough times. The school dd3 is at, I wouldn't trust them as far as I could throw them, given my knackered back that would be no distance at all.

One or two consultants are ok,salt-smile and not at.Physio is ok.Respite center at the moment terrible.I agree with you shaz dd complicated too wont left junior anyone near.

none so far exceot the paed at the child development clinic and the psycologist at CAMHS(not the EP she was useless) not really had much input from anyone yet but the LA, inclusion, teachers ,TA all hopeless bar one teacher who understood unfortunately he didnt have her for any lessons though

I trust our cardiologist ans social worker. However the OT, behaviour team, education all aspects and physio don't trust those at all. Haven't made my mind up about the clinical psycologist or psychiatrist yet. Hope I haven't forgot anyone.

No! Let down / 'stabbed in back' too many times. Hate their untouchable, generalised for the good of the majority, we know best attitude when they barely know him.

I trust the paed but only because he has proven trustworthy over the last 13 years. The head of ds's ASD unit I believe wants for ds what I want for ds so I trust him too. All the others I watch and check up on so no no trust there .

I am currently being let down badly by someone I have known for 10 years. She started out as my Key Worker when my dd was still tiny, and was an absolute GODSEND. As a parent of a severely disabled child herself, articulate and educated, she was AMAZING to us, for us.

Fast forward 10 years (the KeyWorker service hsa long since gone, no more funding) and she is now Inclusion Officer at LA.

Gr8 I thought, someone on the inside. Is she F*. Now that she works for the lEA she acts like everyone else there - doesn't follow through with promises, doesn't reply to emails/phone calls, says 'dont worry ,I'll handle this' and then does FA. Basically stitches me up wasting my time sending me from pillar to post, paper shuffling rather than addressing any of our issues.

ARGGH. I could scream. It must be something in the water at County Hall I think, causing extreme apathy and refusal to help people in distress.

Consultant Pead - yep
Consultants secretary nope!
Ent Consultant - Nope
Audiologyst - No way! Total lack of aftercare "your kids deaf" was about as much sense as i got from them
Nurses - Nope
SENCO/ LA etc Not a frigging hope in hell! They can't even spell dd's name right between them!

i trust nobody anymore been made so many promises over the past 20yrs from so called specialists and was all bs i never got any help at all with my ds2 with asd and learning difficulties ds3 with severe adhd and dd with asd apd ptsd i get no help just empty promises

AlysWho thats really sad but have to say thats the territory that goes with the job (you would think as she knows you so well though) but our inclussion officer at the LA is exactly the same and shes a MS ive been informed never married and has no children (whats new) shes rude and arrogant doesnt even look you in the eyes when speaking to you and always raiseds her voice at you and talks over you bsolutely no peoples skills/bedside manner and even had the gaul to tell me i wouldnt get 1-1 or special school as my jobs to CLOSE all the special schools....nice

the ones at dd1's school - yes, absolutely

mostly yes.

No, after 8 years of painful experience trust is irrelevant really. Every time just as I start trusting them, they show their ugly side. I separate them in competent and incompetent. The competent are the ones I can use. But you really have to be in the driving sit all the time.

The worst experience was with a guru consultant who gave the much needed rubberstamp on the dx but also recommended a special school. I was furious, called CAMH and asked them to remove this from the report as school choice is none of his business.

The thing is they always have an agenda. I am weary of patronising types that look at DS as a lab rat. Many of them are self indulging - focussed on what makes them feel good and advance their career rather than what is best for DS. With all their best intentions they don't have a clue.

This is actually a profound question. As DCs grow up, how do you prepare them to be savvy consumers of care / services? To have their own mind and their own voice?

Would add though I do trust our Nhs SALT, she's fab.

And I met our new consultant pead for epilepsy last week, who shocked me by

a) LISTENING to me
b) Offering advise re aspects of various diff meds that are available, ie putting himself on the line
c)responding with logical, well thought-out and well informed replies.
d) made a follow up appt for 4 weeks time!!

I fell in love with him then and there.

Ps agree with Loko's comments wholeheartedly.

I don't trust a single on that is publicly funded....

however...

I trusted fully the ones we saw privately and the independant educational placement that son attended.

You get what you pay for, unfortunately.

I don't trust anyone, from bitter experience. Some say the wrong thing, and do the wrong thing, some say the right thing but do the wrong thing, some say nothing helpful at all. The only thing I trust is that fact that they all let you down.....not that I am bitter or frustrated or anything

That is why I come on here, 'cos I trust you lot

Head teachers & Senco's NO
GP - chocolate teapot anyone?
HV - more tea with that chocolate?
Pead Consult' for baby - great! Trust
Hosp Nutritionist - fantastic! Trust
A&E Docs - can't praise enough, so kind Trust
Dev Registrar - referrals for irrelevant stuff to further own research - don't trust
CAMHS, (all staff) - so incompetent it is dangerous, I'd sooner trust a rattlesnake.
SALT - what is they are supposed to do anyway?
EP - ditto SALT.
Dinner ladies and after school club staff - these people are worth so much more than they are paid and yes, absolutely I trust them.
Joint Comms Clinic - don't trust,teflon shoulders syndrome.

The only thing I now trust is that those supposed to be most highly qualified to help your child are in practice the least likely to do so.

Real mix for us too,

Portage, SN group staff, Lead Professional, (current) SLT, LD Pysch, HV, all Def yes.

Past LD Pyschiatrist,Head and SENCO of 'other' school Not!!!

LD nurse, MS school, pre-school,'ish' (ie with reservations... )

I think we have frightened away 'developed' the team around ds to a really good one at the moment, (do recognise how fortunate we are).

Head Teacher - NO! Gave evidence against us at Tribunal
NHS SALT - NO! Wrote a report based on what the LA where prepared to provide, not based on what DD actually needed.
NHS OT - Ditto, plus did an assessment a couple of weeks before the Tribunal, unanounced, and sent the report direct to the LA and Tribunal; never sent us a copy at all.
Paed - YES!
EP- No! Again, in collusion with the LA
Teachers -YES, so far, so good.
LSA - YES, great!

I do now- but we've worked our way through a few

Dd's present school brilliant, CAHMS consistently very good, GP very good, paed now very good (after a certain learning curve), ds' school trying...

yes.
but to be fair we probably aren't in any one place long enough to hit a problem. in 7 years and well over 40 professionals there has only been one (a physio in a special school) that i have thought 'you should not be working with children. you are bringing no benefit.'

that said, we have had (as a result of moving) differing medical opinions, but 'science' isn't very 'scientific' really. a lot of it is make it up as you go along - if something doesn't work, try something else. it's the same with education.

we've been very lucky, but have worked very hard to initiate and maintain relationships with all the professionals.