GP wont refer for diagnosis, says children don't need "labels"

[kissingfrogs]

Teacher, senco, AFASIC suggested going to GP to get a referal for diagnosis of dds language difficulties. Afasic's advice was to ask for referal to a Childhood Developmental Centre that specialised in communication disorders (eg Ryegate in Sheffield).

Had a "debate" with the GP and the long & the short of it is that he said NO as he doesn't believe in labelling children as it does no good.

He conceded that if I could find a suitable person to diagnose locally then he may refer, though made it clear he knew no-one in such a position. Sanctimonious prat.

Please don't ask why a SALT hasn't diagnosed...one said it wasn't her field and the other is leaving language therepy to the HI team who now need a diagnosis to understand what they're dealing with....

Teacher/senco urging me to fight but what can i fight when there's nothing there?

school can refer as well - get them to do it

What a prat, (GP I mean!) how does he think children gain access to services without diagnoses? (I know some do, but it is bloody hard extra work!)

I don't like labels either and I am a SALT.Actually I detest labels as it allows a situation to exist where people see difficulties as being effectively the child's issue/fault and thus often try less hard to remedy things that are easily remedied.

I concede they are useful sometimes to access certain services but other than that, why?
It medicalises and pathologises a situation. Communication difficulties aren't like chicken pox, clearly there or not there. They serve as little more than a catch all descriptive term for something we already know.
Having said that, GPs know very little about communication difficulties (and why shoudl they?It's not their field of expertise.)

Omg.. Twonk!

Okay go back to another gp in the surgery and tell them you son either gets a label for being naughty etc or a medical label which you can use as access to help and provision!

Honestly ... Numpties!

WHat a tosser, so if he had persistant tonsilitis would he not refer him to ENT?

Surely thats his PERSONAL opinion and not the PCT or NICE guidelines.
Go back & see a differnet GP

Languiage difficulties can in no way be compared to tonsilitis although your post highlights my issues with labels very neatly.

I certainly wasn't suggesting they should be moondog but a GP cannot decide what condition he takes seriously and which he chooses to ignore... I just couldn't think of a more appropriate commonplace childhood condition

moondog the situation is that everyone is baffled by dds language. It is evident she has receptive and expressive language difficulties, inability to have a conversation, inability to comprehend abstract/out-of-context subjects, difficulties doing language-based school work obviously, etc. I have had TWO teachers of the deaf, both with +30 years of experience each, say they have never encountered a language difficulty quite like dds, never mind in a child who is only mild/moderately deaf. These people believe dds language issues are a seperate disability - a disorder - and it baffles them.

It's out of SALTS league due to HI, and out of HIs league due to language disorder.

In this respect a diagnosis could clarify whether this is a seperate disorder, could help us all understand what is going on, could help ascertain what would be the most appropriate therepy, and could ensure that dd DOES get the support she needs.

Can you ask local parents or a support group where local children have been dxd, to find out the name of someone in the area who can dx? It sounds like the specialist centre will be more useful, but I think it costs more to refer out of area so they might be more willing to refer to someone local?

If there is another GP at the practice you could ask for an appt with them instead and hope they're more helpful? Otherwise you can put in a complaint and fight it, but that could take a long time.

I have come across numerous professionals who held back from 'labelling' and I find it a rather indulgent attitude. It would be nice if we could treat all children individually but the fact is, it's impossible to access services and provision without the label unless you have enough money to pay privately (which I suspect many of these professionals are able to do).

Have you been in touch with Ican? They do comprehensive 2-day S&L assessments and have a bursary fund for those on low incomes.

Well good luck to you if you really beleive that the system of diagnosing and dealing with coplex ocmmunication problems is as clear cut as that.

It isn't.

Most of it done on nothing more than subjective opinion.

Sorry, didn'r know about the HI issue which as you say, clouds the picture even more.

Moondog: I know it's not clear cut, nothing is clear about it, but there will never be any clarification if people sit back and accept that there are no answers and never will be.

What I want most is for someone to sit down and discuss their opinion of communication disorders with regard to my dd. I want to learn & understand so that I can help dd. If I push for a diagnosis that means someone out there will have to think hard about it and maybe just maybe offer an opinion that might help.
I lurk on this board every single night reading your posts and any others on language issues - for possible clarification.

By the way, I meant no disrespect to SALTS. My present SALT has said there will be no therepy from her as waiting lists are too long, and I do appreciate her honesty and don't hold that against her.

anon I appreciate the analogy - I know what you mean.
Monkey thanks, I'll check that out.

Gosh, don't worry about being disrespectful about SALTs! This is your right and if you follow this forum you might know that I am not happy with a lot in the world of SALT.

It's fantastic that you want to be so involved and there are many tihngs peopel can do to help your child. However, don't think that a diagnosis is automatically followed by appropriate support.

I am also the parent of a child with communication difficulties and I have managed to access fantastc provision for her, but would sooner have my toenalis pulled out than seek a 'diagnosis' which is often an end in itself. Some professionals think this alone expalins the issues and that is that.

Which isn't good enough, not by a long shot.

That's certainly a backlash of diagnosis which I hadn't given much thought. I think I've reached that place already as SALT thinks HI explains the issues but HI think language explains the issues, and therein lies the problem as it all grinds slowly to a halt. Between a rock & a hard place at the mo.

It sounds very difficult, it really does. I have worked with kids with language issues who can't access support in their mother tongue which is very upsetting.

I agree that sometime labels do not get you appropriate help. DD (ASD) attended a couple of terms (once a week) at a social communication group run by a specialized speech therapist. Lots of singing and taking turns etc.. but in the long term do I think it was beneficial? - no probably not. I feel that after two terms she walked out with exactly the same speech and social skills she had when she started .

However, having the diagnosis has helped us access 1:1 support for her at school. Staff also looked out for her and supported her tremendously at nursery school although there was no 1:1 in place. DD is making fantastic progress at school.

Although again I have to say SLT provision at school is dire. Apparently the SLT speaks to DD's LSA and gives her a list of things to do with DD!!

Is there any possibility that you could pay a private SLT to assess your DD. I realize it may be difficult to find one with the relevant expertise.

Can you see another GP or write your current one a letter challenging his opinion. If you put something in writing to him ie make it more official it may make him buck his ideas up a bit.

kissingfrogs,

Would change GP practice and find another GP more helpful.

Labels should be seen as a "signpost" to getting more help.

I am guessing you are further North, but we are in the middle of dealing with the Nuffield Speech and Hearing Centre in London here with DD#1. So far they have been absolutely fantastic for the assessement part, though we have to go back next week for other people to see her as they have some unanswered questions on her whole picture of problems. Given this is a joint hearing and speech clinic it could be exactly the sort of place for you to look at going with the complex situation re diagnosis that you face. If you are prepared to travel, maybe you can go back to the GP, or another doctor in the clinic and tell them you have now found somewhere and they need to refer you?

Actually I think they also accept referral from speech therapists too - perhaps you could access it from that route?

Evie, re this

'Although again I have to say SLT provision at school is dire. Apparently the SLT speaks to DD's LSA and gives her a list of things to do with DD!!'

Most NHS SALTs have a caseload that runs into the hundreds and is spread across many sites.It's the only way they can work. However, even if they had fewer children on thier caseloads, the fact remains that it is the people who are with the child day in day out who need to do the things that will make a differnece, not a SALT in a room for 1/2 hour slots which have no bearing on what goes on in the classroom.

Moondog - yes I can see that would be the best way for things to work ie SLT speaks to LSA etc but SLT has not assessed or seen my daughter she is just giving LSA lists of things to work on which DD has already achieved or is achieving inconsistantly. I know if DD is not doing things consistantly then she needs to continue working at that target until she is doing so but I feel that her therapy is more "generalized" rather than "personalized". I know NHS has limited resources and I expect too much

I don't think you expect too much, it's just there isn't enough to go around.
It's very depressing to work knowing your service isn't great too, it has to be said.
Most SALTs would kill to be able to spend more time with fewer people.

Nuffield:

"deaf children with complex needs including speech, language and communication disorders"

"Second opinion service for children with complex speech, language and communication profiles which may coexist alongside their deafness."

YES! That's what I'm looking for!
Thankyou for the link Eveie.

Referals made through GP except for speech & language - so yes they probably would accept a referal from SALT or maybe TOD or head of sensory service or audiology...I'll contact them.

big

If they will only acceot a GP referral 0 change your GP.

What a tosser - would he care not to label cancer if you had it - of course not.

I'd also take the matter up with your local PCT.

If your child's condition is baffling those who should be able to help it's high time they saw a specialist.

Best wishes