How the NHS can make care better for people with Down syndrome

The mother of a teenager with Down syndrome shares her views about what would make NHS services better for people with learning disabilities.
mum with down sydrome teenager
Mainly I want professionals to see the child first and not the Down syndrome.
— Nicola

Two babies with Down syndrome are born every day in the UK, according to charity Down Syndrome Extra 21.

What does having a child with a learning disability mean for a parent? What support is available to help the child and their families live happy, healthy lives?

Nicola, whose teenage son has Down syndrome, shares her views about what would make health services better for people with learning disabilities.

Better training

Caring for a child with Down syndrome has meant frequent visits to local health services for Nicola. She told us she would like to see more training for staff in providing suitable environments for people with learning disabilities.

“Life with a disabled child is certainly different - with frequent need to call on the health service. Mainly I want professionals to see the child first and not the Down syndrome. I want to be treated with respect and listened to when I know how I want my child treated.

My child has had some wonderful care from dedicated caring staff, but there have been gaps in provision. Services such as speech therapy are stretched very thinly. I would like to see more training for staff in recognising and working with people with learning disabilities and providing suitable environments for care.”

Easier access to support

Finding information and support can be a worrying and stressful process. Accessing services in rural communities can be even more difficult. Nicola says it's vital people don't have to struggle to get to the help they need.

"Central Bedfordshire is a very rural area with limited public transport, so it is essential that delivery is spread across the area and it's not immediately assumed that certain care can only be delivered in a hospital."

Help people help the NHS

It is not always necessary to see a doctor"

With the NHS under increasing pressure, Nicola says it's vital that people understand which services they should use and when.

“I feel we should train people to use the NHS wisely and only use urgent services when absolutely necessary, but equally not to ignore symptoms that need looking at.

Wider use of pharmacies could reduce pressure on GPs, as well as increased Skype consultations. We must be careful not to rush to a total move into online services as many do not have access to the internet or do not want to use it, but the option to do so would be good."

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