New law hoped to improve care for people with Down syndrome

The Down Syndrome Bill has passed all the parliamentary stages in both the Commons and the Lords and is now ready to receive Royal Assent.

The bill will require the secretary of state to give guidance to “relevant authorities” on the “steps that would be appropriate for them to take to meet the needs of people with Down syndrome”.

The authorities covered by the bill include those providing health, social care, education and housing services.

“The guidance will also help individuals with Down syndrome and their families to have a clearer understanding of what they can expect and what they are entitled to receive,” stated explanatory notes that accompany the bill.

The bill was introduced by Dr Liam Fox, Conservative MP for North Somerset, as a private member’s bill and received cross-party support.

The explanatory notes stated that people with Down syndrome faced “specific challenges”, and yet many struggled to access the support they needed.

A key driver behind the bill was the fact that the life expectancy of people with Down syndrome has increased in recent years to 58, with many now outliving their parents.

“As such there is a need to address community-based services to support the long-term care needs of an aging population of people with Down syndrome,” stated the supporting documents.

The government has committed to having a named lead on integrated care boards to oversee the implementation of the guidance issued under the bill.

Dr Elizabeth Corcoran is one of the founding members of the National Down Syndrome Policy Group, which supported the creation of the bill.

A third of the group’s trustees are adults with Down syndrome.

Dr Corcoran told Nursing Times how the “real work begins” now in order to create the guidance.

The bill requires the secretary of state to consult with others in drawing up the guidance, and Dr Corcoran said it was going to be crucial to hear the voices of nurses.

She said: “We will be helping to open a consultation so that members of the community, and that would include nursing professionals and allied health professionals, respond to the consultation with their experience of the type of care and support people with Down syndrome have responded to: what has worked, what hasn't worked.

“And all of that's going to be feeding into government guidelines that are going to accompany the bill.”

Explaining what it meant to her to see the bill pass its final reading on Friday, Dr Corcoran said: “It was just so emotional, we couldn't have dreamed that we would be seeing history being changed today.

“We know that the real work is kind of going to start now, but it's just so exciting.

"There's so much evidence that people with Down syndrome need a tailored approach around education and healthcare, and to see that being recognised from government as well [is] just so encouraging.”

One concern raised by some groups was around why the bill only focused on Down syndrome and how the measures in the legislation could be beneficial to other people with learning disabilities and genetic conditions.

The government has pledged to consider “overlaps and linkages” between Down syndrome and other conditions when consulting for the guidance.

Helen Laverty, professional lead for learning disability and mental health nursing at the University of Nottingham, welcomed the bill and said it was important for nurses.

She told Nursing Times: “It's important that we see people with Down syndrome as citizens in their own right, rather than as a homogenous group of individuals that we believe we know how to look after.

“It also gives us opportunity to actually engage more effectively with that community, and make sure that we meet the needs of the individuals who have a mild to moderate learning disability… but also people with profound impairments, who also have Down syndrome.”

She said there was a clear appetite for such an approach for all learning disabilities.

Gillian Keegan, minister for care and mental health, commended those who had worked to bring the bill forward.

“This bill will ensure the needs of people with Down’s syndrome will be better met by local authorities and heath and care services, and will also support people with other genetic conditions and disabilities who share similar experiences to people with Down’s syndrome,” she said.

“We will work closely with people with first-hand experience in developing guidance.”

It is expected that necessary guidance around the law will be developed within a year after the passing of the act.