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