Portsmouth charity launches new pack to help parents of children with Down syndrome

Portsmouth Down Syndrome Association launched their Parent Pack yesterday at Queen Alexandra Hospital.

It will give advice to families of children with Down syndrome and signpost them to the charity which offers support throughout the city and surrounding areas.

The pack contains case studies of young people with the condition and what the charity can do to help.

It also has information for doctors and nurses when telling parents about the diagnosis and the best terminology to use.

Staff and volunteers from the Portsmouth Down Syndrome Association spent the day at QA Hospital to promote the pack and mark the launch. 

Rachael Ross, chairman, said: '˜Studies show health professionals delivering a diagnosis have a unique opportunity to positively shape the early phase of a family's journey.

'˜But we hear from so many of our families that this can be a negative experience for them.

'˜Our hope is that the Parent Pack will provide specialist support for new parents at the point of diagnosis and offer guidance to midwives and paediatricians on how to make the experience a more positive one for parents.'

Training sessions held by the charity before the launch were welcomed by NHS staff.

The packs will be rolled out across the region with resources currently being distributed to maternity units, hospitals, GP surgeries and children's centres.

Parents of children with Down syndrome have welcomed the new project.

Alice Osborne, who works with the charity, said it would have made a difference had it been available when she had her son Teddy who is 20-months-old.

'˜I would have loved to receive it when my son was diagnosed,' she said.

'˜Fortunately, when I was told it was done positively by a lovely doctor but I still had to look online for where I could get support.

'˜With these packs, all the information is there about the charity. I also loved reading the comments from the older children and what they have achieved.'

Hospital staff have also welcomed the new packs and the advice it gives them.

Susi Hill, practice educator in the neo-natal intensive care unit at QA Hospital, said: '˜The guidelines are a great resource to help the neo-natal team support the families in those wonderful and challenging first few days of life.

'˜Their training session touched us all and had a very positive influence in the way we may think about children with Down syndrome.'