MEDIA RELEASE
15March 2012 3pages
Parents and health professionals mark Down’s syndromeday
Parents of children with Down’s syndrome are being invited to get involved in re-shaping how they can access help from health professionals. Families, doctors, therapist, specialists in learning disabilities and other NHS staff are gathering at Leicester’s National Space Centre on World Down’s Syndrome Day – 21 March 2012.
A new “map” of care available for children with the genetic condition is being unveiled by the Leicestershire Partnership Trust (LPT) – making it easier for parents to understand what help they can access.
The document has been delivered in response to feedback from parents who say it can be bewildering to try and negotiate the healthcare system when a child is born with Down’s syndrome. Now, with the help of parents, professionals from different disciplines have come together to agree onthe best “pathway” for families to follow, in order to receive the highest standard of care. This pathway is explained in an information pack forparents and carers which should help to ensurethat all families consistently get the best information about the services available.
“It’s absolutely brilliant that this information pack has come together,” says Ashma Sabat, a parent from Oadby whose three year old daughter Fatima has Down’s syndrome. “When your child has special needs there’s enough to cope with, it’s difficult to find the time to look into what help is out there, so you can find your child is missing out. I’ve been helping to check whether the pathway document will be helpful and my measuring stick has been whether or not it describes a package of care that I would have wanted to receive for Fatima – which it does.”
Parents will see the Down’s Syndrome Care Pathwayinformation pack for the first time at the event next week. They will be invited to give feedback on the pathwayitself and express their opinions about how improvements can continue to be made in the future.
Following the launchthis information pack will be available to all parents in Leicester, Leicestershire and Rutland, who have or are going to have a child born with Down’s syndrome.
LPT Paediatric Consultant Dr Mary Small has been central to coordinating the different organisations that can be involved in caring for children with Down’s syndrome, to establish the pathway of care. “We are extremely proud of the work we have been doing to make sure families who have children with Down’s syndrome get the best experience from the NHS,” she says. “Parents have told us how they needed things to change in order to feel they are getting the best for their children - and we have responded. They said they felt there was little information about the range of services locally for children with Down’s syndrome and how to access them. I’m pleased to say we are now drawing all that together so a diverse range of health care specialists can offer a smoother, easier to understandand easier to access integrated package of care.”
The event on 21 March 2012 marks World Down’s Syndrome Day. The date (21/03) represents the three copies of chromosome 21which are unique to people with Down’s syndrome.
All people with an interest in the care of children with Down’s syndrome are invited to attend to hear more and have their views heard. Entertainment for children will be at hand to ensure parents can be free to get involved. Attendees will also receive free tickets to return to the National Space Centre Exhibition and seats in the Space Centre theatre show“We are Astronauts”.
There are two opportunities to attend the Down’s Syndrome Care PathwayLaunch Event, a morning session 10:00 – 13:00 and an afternoon session 12:00 –16:00, both include lunch.
People who would like to attend can email or contact Louise Woolley, Families, Young People and Children’s Services,
Bridge Park Plaza, Bridge Park Road, Thurmaston,Leicester, LE4 8PQ. You can also contact us if you cannot attend the event but would like a copy of the information pack.
Note to editors
LPT provides a range of health and wellbeing services mainly for people living in the city of Leicester and the neighbouring counties of Leicestershire and Rutland. We serve a population of one million and employ around 6000 staff. LCPT is a social care provider which champions inclusion and access to social resources for all – the organisation has a 30 year history of developing new services in order to meet the needs of people in Leicester, Leicestershire, Rutland and surrounding regions.
Our mission: Toadvance health and wellbeing for you and your community
Our vision:To become an integrated Foundation Trust with a passion for quality and excellence
Issued by Jimmy Endicott
Communications Manager, Leicestershire Partnership NHS Trust
Tel: 0116 295 0919E-mail:
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