Sunday 20 December 2009

Lamb Inquiry - final report


Charged with improving parental confidence in the SEN system
Brian Lamb came up with a staggering fifty-one recommendations, including an independent advice line for parents. Long over due.

I first got online in 1999 and I finally had a breathing space (in between looking after a newborn and a small, very active toddler, but thankfully on maternity leave) to try and research what should be happening with Zack - he was five at the time, and nowhere near a useful diagnosis. And so began my obsession with the internet. Answers were hard to come by.

Realising that others had the same difficulties in January 2002 I set up a yahoo group with the following opening message:
This is a group which principally helps navigate the continual reforms of the British health and education services. We're here to share and learn from our successes and failures. We've had plenty of both.
My groupies and I spent the next four years working through our own situations. We spent many a late night reading guidance and codes of practice and working out how we could use their contents to ensure that even some of our children's most basic needs were met. We weren't looking for the 'the best' education for our children, merely an adequate one.

For my son, he had to leave the state system to find an autism-specific placement. Even though I love his current school dearly I regret that the local authority could not provide his education in a more inclusive environment. He was failed and rejected by society and remains excluded and isolated by the mainstream, though loved and very well cared-for by the school and us, his family.

It shouldn't be happening like this. Having better information and the fifty other recommendations are welcome but will do little to overcome the fundamental rejection of disability.

Friday 18 December 2009

Parents' experience of Disabled Children's Services in Hounslow

As part of the Aiming high for Disabled Children, available for the first time this week the DCSf has published Parental experiences of services provided to disabled children: 2009-10 (scores for Hounslow in bold, national scores in brackets):

Health Education Care & Family Support

Information 67 (69) 78 (70) 65 (69)
Assessment 70 (76) 78 (77) - (67)
Transparency 91 (96) 92 (92) - (89)
Participation 60 (61) 57 (48) - (53)
Feedback 17 (12) 25 (20) 5 (12)

Overall score: 61 (61)

This data has been collected through a questionnaire to parents asking their views on health, education and care and family support. The focus is on the core offer that makes up Aiming High which is not due to be fully in place until March 2011, and it would seem that local authorities can increase feedback (whatever is meant by that) and achieve a massively increased score without any change whatsoever in front-line services.

Thinking about it, very little in the Core Offer affects front-line services.

Sunday 6 December 2009

We're engaged!


PiT and the PCT, that is.

We have succeeded in meeting with the head of commissioning and talked about Aiming High for Disabled Children in Hounslow. Only took a year.

We are talking about the wheelchair service and palliative care, and why disabled children don't turn up to appointments.*

No cigar yet, though: our other partner in this three-way marriage, the local authority, is giving us cold feet about the procurement process.

It might be a stormy betrothal...



*I could tell them a tale about the parent of a disabled fifteen year old turning up at the wrong place, only this week. Ain't sleep deprivation a wonderful thing?

Monday 30 November 2009

Hounslow PCT - financial crisis continues

Figures released this month show Hounslow Primary Care Trust (PCT) predicted to overspend its budget by 4% or over £7million this year, making it the second-highest overspending PCT in the country.

Read this alongside a second report where the PCT tops another league table by doubling the cost of penpushers through buying some highly specialised financial advice, and you really do despair.

I wonder if they'll use the West Middlesex excuse of patients not turning up for appointments.

Sunday 29 November 2009

Very sad news

Cathy is no longer with us. Just 22 years old, swine flu with a history of poor health.

We are all devastated.

Saturday 21 November 2009

Together for Disabled Children

The banner (above) on the home page of the consortium charged with monitoring how local authorities and primary care trusts deliver Aiming High for Disabled Children, a £680million programme charged with transforming services for disabled children and their families, depicts three apparently active children and an adult in a wheelchair.

Serco and Contact a Family what were you thinking?

Imagine a space...



... where you can do anything.

Inspiration for our Aiming High project from 4D Creative

Wednesday 11 November 2009

A question for the reader

I have been in touch with a parent this week (that's what we do!) who puts forward these events:

She has a four year old in a nursery class. This child is currently receiving Speech & Language Therapy input and awaiting further paediatric assessment. The child has developmental delay and there is a general consensus that the difficulties are long term.

The child needs support and the school are providing one hour per day and at the end of this time the child goes home. The other children in the class remain.

My question is, is this equal opportunities as you know it?

Monday 2 November 2009

Saturday 24 October 2009

Hounslow PCT - disabled children don't matter


A year older this week and full of arthritic twinges, I think I need to start saving for my hip replacement surgery now - Hounslow PCT won't have dug itself out of its financial hole any time in the next twenty years.

I have just been trawling the Hounslow PCT website to find its Autumn Statement which should have been published by 30 September. Such a thing in Hounslow, I'm sure, does not exist.

So £340million from the Department for Children Schools & Families, matched by £340million from the Department of Health. Hounslow's share of the DCSF funding is nearly £1.4million, and so far a mere £40,000 has been identified within the PCT.

This has a flavour of theft about it.



Tuesday 20 October 2009

Local Hero!

Phone call today to confirm that I'd won an award from Bank of America for all that's been happening at PiT.

It's been hard work with slivers of time snatched at odd moments, mostly late at night, but I've enjoyed all of it. Thanks to fellow PiT member Michele for nominating. She must have written a cracking application.

Nicolaides-Baraitser Syndrome

Never heard of it either, but it could be us. It's a list of symptoms so far, with only a handful of people in the world having them. There is a professor carrying out research and Zack is under further investigation.

If it pans out it would explain more than a few things and give validation, at long last, to the lack of progress on toilet training (I knew it wasn't me).

I'm back!

Well I was considering finding out how name your home officially as it really did seem that we were living in Viral Lodge. Hannah with a temperature of 39.6 degrees C spending the entire day in the First Aid room at Legoland just about sums it up.

Then there was the special school transport saga which evolved over a new pupil on the taxi route having trouble making the transition from classroom to taxi at the end of the day and my own dear boy taking personal affront at what he perceives as 'naughtiness'. This has spilled over into home life too, with my 'naughty' daughter having to get out of the car and walk home whilst I stalked her by driving beside her.

So that was my summer. Thankfully we are in recovery and have much more positive things to post.

Thursday 9 July 2009

Post-Bercow, Speech Language and Communication Needs

News just out of Hounslow's success as a pathfinder:

Hounslow

How do commissioned services best meet the needs of all children with SLCN? Looking at phases 1 and 3 commissioning to develop good practice parent and child engagement in commissioning services.


And the organisation that will be supplying the families? Our very own Parents in Touch, of course.

Wednesday 1 July 2009

Swine Flu?


Zack, my autistic son, has been home from school for a week, which means a halt to work at PiT, more or less. I was on a training course with Participation Works last Thursday when a series of texts flew backwards and forwards. Thankfully my mum came to the rescue.

Zack and flu* (now where's the rolly-eyes smiley?) - very feverish and insisting on going out into the garden to sit on the swing seat at 3.30am on Friday. The joke wore a little thin when he woke me at 4am, 5am and 6am to rearrange his blanket.

Friday was a bakathon for the school fair, Saturday was spent selling cakes (we took £200+), Sunday was a family day with my nephew and his girlfried, Monday was Hannah's 10th birthday so a birthday tea. In the meantime Zack still not well and needing support of the 10-minute attention-span kind. Exhausted by Tuesday, so flaked out on the sofa in 30 degree heat for most of the day.

Both Zack and I recovered today (Wednesday), so he's back at school tomorrow, and I got through a stack of things for PiT. And in a work avoidance tactic I looked through the photo albums at Activenture to find the above gem of a photo. Spot the autistic person with the humongous personal space. Made me laugh, anyway.


* not confirmed that it's swine flu, but definitely viral, and it went through the school (who have adopted a Blitz spirit) pretty swiftly.

Tuesday 9 June 2009

I love Lion Television

We had a call from them today and they want to send us some money! That's all I know, but certainly the best phone call of the week.

Sunday 17 May 2009

Adventure playground mystery tour

Take a bunch of adults (all over 40, so supposedly mature) and put them in an adventure playground and what do they do? Cllr Paul Lynch, current lead member for Children's Services in Hounslow, swinging. No, not that kind.

Rolling up at the Haywood in north London we found ourselves waiting on the wrong side of a 10 foot fence.

"Well this looks high, but I know a child with autism who could get over this," I mused. Cue Robin, well over six feet tall and definitely under 40 years of age striding across the park, rubbing his eyes and talking into a mobile.

"Sorry I'm late," he said. "Been up half the night waiting to hear about a boy with autism who'd got over the fence and run." He had a history of it, apparently, and been found one time somewhere in south London, having taken a bus there, they thought. The boy was home.

Sunday 10 May 2009

Ant & Dec in Brentford

Okay, this is supposed to be about PiT, but sometimes real life takes over...

Declan Donnelly and my three at Griffin Park today. Ant was in goal. Ben Shepherd from GMTV was slightly taken aback to be considered old enough for a place in the 'Vets' team.

And it was such a nice early summer day that we 'christened' the paddling pool in the morning.

Friday 8 May 2009

One year older


Now that's what I call a cake...

My dear son was fifteen years old on Wednesday. Celebrated with a small family party and the ceremonial unwrapping of this year's paddling pool. Far too cold to even get the pool out of the box, but it is a long tradition that number one son's birthday presents include a new pool.

And the pressure to produce a cake, I can't tell you. Non-verbal son had indicated to his teacher last year that the best bit about his birthday had been the cake and she'd phoned me in excitement at this breakthrough in communication. Added to which Grandma had spent the weekend reminding him how marvellous it had been. Thanks for that.

Having been on a gluten and dairy free diet for the past seven years popping down to M&S just isn't an option. Antoinette Savill's Passion Cake was whisked up late Tuesday. What a trip down memory lane! Remember when carrot cake just melted in the mouth? Well there you have it - make the cake yourself, and no hint of that slightly claggy aftertaste with the usual gluten-free stuff. Have to say though, I think I've peaked.

Quote of the day: my five year old bursting over with laughter, "Look everyone! Grandma's wearing Clark's"

Wednesday 29 April 2009

One of those weeks

Well I've got to the middle of it in one piece. A long day on Monday with a Parent Feedback Day at the Civic Centre, following which I have hastily put together a bid for funding. Getting frustrated that frontline work is getting pushed to one side in order to help the local authority meet their obligations.

Other highlights so far: a third meeting with someone to tell them the same thing all over again - they finally got it; an on-off meeting that was finally on - at 8pm I'm not at my best; a trip to Tesco after the 8pm meeting; a seven year-old who really thinks he should be in Cubs now and not boring old Beavers; booking tickets for Hannah Montana with my five-year-old and her overflowing anticipation; getting soaked and frozen in the rain on Tuesday - I do love those silver sandals; a minuscule ham and tomato sandwich in the pub at the top of Church Street, a picnic lunch with my DH by the river today watching the black swan; and, someone telling me that PiT was a part of their family (aww).

Saturday 25 April 2009

Tony Hadley is very tall



I met him on Tuesday, at the House of Commons. The award he presented me with was in a silver frame. If only it had been GOLD!*

Friday, PiT caught up with each other after the break and did a lot of planning - some exciting developments ahead. Lunch in the sunshine in the patio garden at St Denys, making a relaxing lead-up to the weekend.

BTW it took three days to get through the answer machine messages from not being in over Easter.


*copyright SFH

Saturday 18 April 2009

Thames Valley Adventure Playground


Today was one of those days that PiT was created for. Twenty young people and fifteen of their carers went to the fabulous Thames Valley Adventure Playground in Taplow in Berkshire to run, jump, climb and, yes, paint in the spring sunshine.

They have a fabulous new extension going out over the water that vastly increases the indoor space, improving the experience for users no end.

So I chatted with parents, watched over my children and felt at peace with the world, not least because my eldest boy was perfectly content to be there. A rare occurance indeed.

Thanks to the parishioners of Our Lady of Grace and St Edward's and other residents of Chiswick for their efforts at the 2008 summer fair which made today's trip possible. Everybody who went wants to go again.

Of course the long-term ambition must be to find a way of duplicating this closer to home, but I'll leave those thoughts for another day.

Friday 17 April 2009

An award! We got an award!

Call me a jaded, tired, cynical over-worked mum, but as a group we have been so concerned with 'frontline' services that we hadn't been 'in touch' [I'll stop doing that soon, I promise] with our MP. We put that right at the end of last year and she, Ann Keen, immediately brought us along to a meeting with Brentford FC Community Sports Trust and Sports Minister Andy Burnham.

Today I hear she also nominated us for an award from think-tank organisation Kids Count and we have won a 'Highly Commended' for our work here at Parents in Touch (or the PiTs as it's known in our house). Off to the Houses of Parliament on Tuesday to mingle.

Hello!

Karen Adams from Parents in Touch here. Hopefully adding this blog to the website so that we can keep 'in touch'. Simple idea. Let's hope it doesn't go the way of the other blogs I've started.