skip banner - Return to original view
site viewing options
 
Parents|Medical Information|Professionals|In your area|Campaigns

PCTs failing to publish statements on services

Nov 04 2009

The Every Disabled Child Matters campaign, of which Contact a Family is a founding member, has gathered evidence that reveals, despite a clear government mandate, many Primary Care Trusts (PCTs) failed to publish a statement on their services for disabled children by 30 September 2009.

Srabani Sen, Chief Executive of Contact a Family and EDCM board member, said:

”The Department of Health has confirmed that PCTs have £340 million for disabled children’s services, but it is still very hard for parents of disabled children to find out what this money is being spent on.“

Although 30 PCTs have signed up to the EDCM PCT Charter, only eight have published statements on disabled children’s services.

‘We are pleased to see a number of PCTs have published statements on disabled children on their websites. However it appears that most PCTs have either not published statements or have not made them readily accessible, which makes it difficult for local people to review and challenge them.

‘We hope that Strategic Health Authorities, who have the job of analysing and approving the statements, will urge all PCTs to publish full statements in a prominent place online.”

For more information see EDCM's website

 

Bardet-Biedl syndrome

Background

Bardet-Biedl syndrome: BBS; Laurence-Moon-Bardet-Biedl syndrome

The syndrome is a rare inherited condition which is variable in the way in which it presents. Characteristics are: rod/cone dystrophy (atypical retinitis pigmentosa - a progressive eye condition which can lead to blindness (see entry Visual Impairment)); obesity (usually with an early onset and resistant to treatment); polydactyly (extra fingers and/or toes); hypogenitalism (underdeveloped genitals); mild to severe learning difficulties; and kidney malformations and renal dysfunction.

In the Middle-East and island communities such as Newfoundland, the condition is relatively common, occurring at rates of 1 in 13,500 of the population. In Europe and the UK the prevalence is much less common owing to lower consanguinity. The figure is probably between 1 in 70,000 to 100,000 of the population. Although BBS is not common it is certainly under diagnosed. As awareness of the condition increases, the number of people identified is growing every year. 

How is it diagnosed? View How is it diagnosed?

Medical text written January 1996 by Dr P L. Beales. Last updated October 2005 by Professor P L. Beales, Professor of Medical and Molecular Genetics, Wellcome Trust Senior Research Fellow in Clinical Science, Consultant in Clinical Genetics, Molecular Medicine Unit, Institute of Child Health, London, UK.

 

Tell us what you think of this information...

Print whole article Print whole article

 

This Web Site © Copyright, Contact a Family 2010
Contact a Family, 209-211 City Road, London EC1V 1JN
Tel: 020 7608 8700

Registered Charity No. 284912. Charity registered in Scotland No. SC039169
Company limited by guarantee, registered in England and Wales No. 1633333.
HM Revenue & Customs charity tax reference No. XN54769. VAT Reg. No. GB 749 3846 82

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.