27 August 2010

From Pillar to Post

I'm hopeful that at some point I'll be able to write a blog post where things are progessing but it won't be this one. I'm really getting the run around and getting pretty fed up with it.

I got a letter from Paediatrics telling me that Nipper had an appointment. Great, it must be the language assessment. However, the letter wasn't clear and the appointment wasn't until December - rather a long time to wait for an assessment. So I rang up to check it out and ask how come we had to wait so long (7 months from when we saw the Paediatrician).

That's when I hit the first problem. The phone number on the letter isn't actually the department who sent it so the person I'm talking to can't help. She's very helpful though and says she needs to speak to her colleague and someone will ring me back. Two days later I get a phone call and a different women explains that the reason we have to wait so long is because that's what the Paediatrician wanted. I'm thoroughly confused and after a bit of questioning it turns out that this is not our diagnostic assessment after all but the follow-up appoint for when we have had all the necessary assessments.

So, what's happening with the diagnostic language assessment appointment then? The person I'm talking to can't help with that but gives me a phone number, which is the number of the colleague who needed to be consulted two days ago. It's only 3:30pm but apparently there's no point in ringing as there wouldn't be anyone there. So I ring the next morning, and I get an answering machine, and I leave a message. Two days on and I havent had a reply so I ring back on the number on my original letter again. 'Barbara' (whose answering machine it was) is on holiday. The person I'm speaking to can't access the system so will try to look into it and ring me back. Later that day a different person rings me up as they want to be sure of who I am and check Nipper's details. This person knows that we saw the Paediatrician back in May but can't confirm for certain whether a referral has been made for Nipper to have the diagnostic assessment and the locum Paediatrician we saw has now left. ('Barbara' appears to be the only person who can access the system - lets hope she doesn't get hit by a bus!) It seems that there are two referral systems in place - one for Paediatricians and one for GP referrals. If you are referred by your GP you will be seen within 18 weeks to meet NHS targets. If you are referred by the Paediatrician then you have to wait for a space in the list of people referred by GP's as no targets are in place for Paediatricians. So, in order to be sure that Nipper gets seen soon-ish I'm supposed to go back to my GP and ask her to write a letter. The Paediatrician sent me back to the GP back in May and she threw a hissy fit and told me it wasn't her remit to deal with Nipper any more and his care was down to the Paediatrician.

Added to this ridiculous mess is my ineffective attempt to get an Ed Psych referral. We had a meeting with the nursery and SENCO about this ages ago and the SENCO was supposed to be checking to see if Nipper was on the list already and if not then putting his name forward. I also chased it up with the nursery after the GP confirmed that the Paediatrician definitely wanted this referral. We haven't heard anything despite me chasing it up again and Mr Earplugs (hubby) leaving a message on the SENCO's mobile. Yesterday I bumped into the SENCO at nursery when I arrived to collect Nipper. She said she couldn't get hold of Mr Earplugs (even though he had given her 2 different phone numbers to get him on!) and when I queried the Ed Psych referral she said my GP needed to do it. For goodness sake!! I'd already told her that the GP won't do any referrals and that it was the GP who told me to ask her. So now, about 2 months after I first asked, she said she will speak to her boss about bypassing the system - whatever the system is - and getting Nipper's name on the Ed Psych list.

It's three months since we saw the Paediatrician and we are getting nowhere fast. I wish I knew how we are supposed to get the referrals we need because at the moment everyone just keeps saying that it's someone elses responsibility and we don't know if anything is actually being taken forward. It's stressful enough dealing with Nipper's problems without having this hassle as well!




  1. Oh, Tilly, I can only imagine how frustrated you must feel about all this! Unfortunately, I can't offer any advice this time as we had a very straightforward diagnosis, no follow up or additional assessments - just go away and get on with it, basically! (Although I do wonder sometimes if there are more things we should be on the lookout for...). I would add, though, that our school SENCO has been a great support and has called in various specialists to observe Joe at school. In fact, now I think about it, we had a similar thing with the GP who said they didn't do referrals for autism, so the SENCO referred us instead! I hope you find some answers soon.
    R x

  2. That's awful! My friend has a similar problem with her little boy. She says the worst thing is the feeling that nothing is happening, despite her repeated attempts to secure a diagnosis. The G.P just passes the buck, and the Paedeatrician doesn't return her calls. Good luck. Hope you get things sorted soon.

  3. It's disgusting that parents are left to fend like this. The first thing I would do is find another GP. There are so many hurdles to get over that the minefield does tend to become a never ending expanse of confusion but you will get there eventually. How old is Nipper? Unfortunately, as is typical with this country, there are too few professionals for too many cases and this mainly boils down to funding. There are some people you could contact however, like the Parent Partnership and the Family Fund; are there any centres for autism in your area and have you been in touch with the National Autistic Society? They have a helpline which is particularly helpful and might be able to advise you further. You are right, it is stressful enough having to deal with a child who is going through these assessments, not knowing for definite what the diagnoses will be and wondering if the Statement of Special Education Needs will be awarded at the end of your efforts. But I'm afraid you have to push, push and push again. Phone every day, make a nuisance of yourself, be as assertive as you dare. Most of these "professionals" are patronising know-alls and I learnt my lesson long ago.

    You may know that my daughter who is now 10, was diagnosed with autism when she was 3. It was 18 months of assessments, meetings, stress and living on the edge but we got through it and she got the statement. She's doing really well in mainstream school now but we do have serious issues which we are addressing and again, 7 years on, I'm still battling.

    Take care and stay with it.
    CJ xx

  4. I can so relate to this! We had so may problems with getting appointments for therapies and help for our DD. Wasted days on fruitless phonecalls to bureaucrats who didn't give a toss :)


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