Launch of Down’s Syndrome Pathway 21 March 2018

Daryl Stansfield

Year 2 learning disability nursing student writes:

On Wednesday the 21^st of March the Down’s Syndrome Pathway was officially launched and could not have been held on a better day as it coincided with World Down’s Syndrome Day; an internationally recognised day for those living with and caring for those with Down's Syndrome.

The launch took place in a conference room near the Deep in Hull and was well attended by a variety of health professionals and commissioners all involved in caring for and supporting the wellbeing of people with learning disabilities. The event was also attended by many families and parents of those with Down’s Syndrome who also brought along their children to celebrate and take part in the launch of the care pathway, which without their determination to make a difference to the quality of care for those with Down's syndrome, would not have happened.

The aim of the Down’s Syndrome Pathway is to provide a clear route of how care should be delivered throughout the lifespan of individuals with Down’s syndrome aiming to correct the inconsistencies in care experienced by many families. The pathway also aims to help navigate health care professionals to do the right thing in the right order with the right people and in the right amount of time to meet the right outcomes all with attention to the individual’s experience. Also intending to put all the health information pertinent for people with Down's syndrome in one place.

The launch was opened by the chair of the Hull Clinical Commissioning Group, Dr Roper who commented on how relevant and needed the Down's Syndrome Pathway is, expressing the importance to the wider community.

It was pleasing to see two local charities that support children, adults and families with Down’s syndrome in Hull and the East Riding of Yorkshire, Hull based ‘Downright Special’ and ‘Special Stars Foundation.’ Each charity providing excellent services in promoting awareness of Down's syndrome and sharing advice to both health professionals and parents at the event.

Not only was the launch a great place for networking, sharing expertise and advice around Down’s syndrome, the launch also shared the views of parents of children with Down's syndrome, with some presenting emotional and passionate commentary on their experiences of health care services from the birth and diagnosis of their children to present day.

Thank you to all services and organisations making the launch of the Down’s Syndrome Pathway possible, including the hard work of Anna Daniels, a Registered Children’s Nurse with a special interest in supporting people with learning disabilities. Special thanks also go to the parents and families of children and adults with Down's syndrome who fought to get their voices heard and reminded us all to see their children first before their diagnosis.

For more information about the Down’s Syndrome Pathway and the charities who attended the launch please see the links below:

Down Syndrome Pathway

Downright Special

Special Stars Foundation