A mum of a Down’s Syndrome teenager shares her views on what would make health services better for people with learning disabilities.

Caring for a child with Down’s Syndrome has meant frequent visits to local health services for mum of two Nicola. She would like to see more training for staff in providing suitable environments for people with learning disabilities.

Nicola, from Bedfordshire, said:

“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’s 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.”

Nicola, who has ME/Chronic Fatigue Syndrome, cares full time for her children and volunteers for Healthwatch Central Bedfordshire. She continued:

“I am aware that funding is limited so I want money to be spent wisely and services delivered as close to home as possible.

“This is a very rural area with limited public transport so it is essential that as far as possible delivery is spread across Central Bedfordshire and there is not an immediate assumption that certain care can only be delivered in a hospital.”

Nicola would like to see new ways of working in the future:

“It is not always necessary to see a doctor – but we still refer to ‘booking a doctor’s appointment’. This puts huge strain on doctors. I feel we should continually train people to use the health service wisely in only using urgent services when absolutely necessary but equally not ignoring symptoms that need looking at.

“Wider use of pharmacies could reduce the pressure on GPs especially. Triage services in A&E do redirect those not with emergencies to a more suitable service. Some patients would be happy to have a consultation over Skype or similar but some would not – a range of provision must therefore be offered. We must be careful not to rush to a total move into online services. Many do not have access to the internet or do not want to use it.”

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