Tuesday, 6 July 2010

Falling foul of the system

I have blogged before about my daughter's difficulties at school. I don't like to write much, for her own privacy, but it has a great impact on our lives and the focus of our attention. I joke that I have children two years apart chronologically but four years academically. I think the four is growing - at both ends! My son keeps on at leaps and bounds.

My daughter's progress is slower, but she has shown a marked improvement over the year and I am inordinately proud of her. She is a bright and cheerful child who loves life. Unfortunately she has trouble with concentration and comprehension, both of which spill over into many aspects of schoolwork.

Before you ask: here are some of the background details. She is being seen by speech & language and has been assessed by OT. She is getting extra sessions, principally for confidence building, from SEN and they are giving as much extra time to her in class as is reasonable (given, for some reason, they feel a need to teach all the other children as well!) We've checked her eyesight and hearing (both fine) and hopefully she'll be seen by an educational psychologist in the next three months. She remains a mystery.

In many ways I'm delighted that she is unable to be labelled, but labels do often aid in knowing how to help a child. If she was autistic, there are schemes and charities in place to help. If dyslexic, similarly. If just generally not at the level she should be... nothing. It would be nice to have a clear plan as to how to help her progress.

My husband (a paediatrician) also knows there is something wrong without being able to pinpoint it. In amongst all the assessments already done, we thought it would be a good idea if she was seen by a developmental paediatrician. He (or she!) would be able to assess whether she is progressing normally according to her age. Maybe she simply is a year or so behind and if we accept that she will progress as normal, and maybe with a bit of help catch up a bit. Or maybe she is falling further and further behind and her development is not in line with 'the standard'. Either way, this could only be assessed by a specialist.

So I got a referral from the GP.

I dutifully took my daughter to the hospital for the appointment.

I spent nearly half an hour explaining my daughter's history and my concerns.

Then, at the end, he very kindly explained to me that he wasn't a developmental paediatrician but a general paediatrician with a specialisation in diabetes. He had been given the appointment because there was a waiting list to see the community team. There is nothing obviously wrong, he said. Come back again in four months.

Of course, by then it was too late for me to do anything about it. What was I supposed to do? Throw a hissy fit? Not my style. I came home and brooded. My daughter had lost a precious morning's education for an assessment that her father could have done.

There is nothing obviously wrong. My husband can do a general assessment to conclude that! Heck - I can conclude that! What I needed was a specialist. Someone who would look closely at my daughter's handwriting and recognise that it was behind standard. Someone who would think that my daughter's struggle to know how to draw a man was perhaps a little odd when aged 7. Someone who would know that a sibling of a very bright child and daughter of highly academic parents should be comfortable at school. Someone who would play some games with her and find out what her maturity was like.

I have to play the system. It was no-one's fault: the NHS machinations don't have a little flag saying 'this child is complicated' but a deadline for appointments. I either fell foul of the 'be seen within 18 weeks' rule (I was, impressively, seen within eight weeks) or of their subtle scheme for filtering out the children who are being pushed by paranoid parents, the parents who simply think their child is brighter than he or she really is. I wish I was just paranoid. But I have a husband, educated in the field, who is also concerned. I have a headmaster with many years of experience who is baffled by her. She is not straightforward.

Now I am trying, gently, to avoid apportioning blame. As with the house delays, we have to move on from here and now, not from back then. The pressing issue is to get her the right appointment. Hopefully the lovely receptionist at the GPs will be more effective with her second letter, sent directly to the developmental paediatricians (by name).

And just think: I haven't even begun on the battle with the educational authority to get her 1:1 support in class. Oh, my war has barely started, but rest assured: the only winner will be my daughter. Somehow.


Trish @ Mum's Gone to... said...

Oh how frustrating! My husband is a GP and he is now finding the "choose and book" system very useful for referrals (having initially moaned and groaned about it). He can find the exact clinic/specialist and make the appointment there and then when the patient is sitting with him. This would have avoided you being shunted to a generalist.

Fingers crossed you will get the help you need.

The Dotterel said...

I sometimes think that if 'the system' spent half the time and energy that concerned parents do, there wouldn't be a problem. Hope you get the assessment that you know you need, and soon.

lulu's missives said...

I wish you much success in this endeavor for your daughter. I have a friend who fights similar battles for her autistic son.

Working Mum said...

I wish you all the luck in the world. Keep plugging away and you will succeed. Thank heavens your daughter has two educated parents who can navigate the labrynth to get her assessed and supported. How most parents would go about it I don't know!

Hearth-mother said...

I very much agree with 'Working Mum'. She is very lucky and will be with winner, eventually.

Catharine Withenay said...

Oh - thanks everyone for your lovely comments and support. It really means a lot to me and just strengthens my determination to get the best for her. Thank you!

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