Blog > Ruth Evans, PEN shares her 10 steps to delivering high quality maternity care to parents with learning disabilities


Ruth Evans, Patient Experience Network (PEN)

Ruth Evans, PEN shares her 10 steps to delivering high quality maternity care to parents with learning disabilities

Like a lot of first time mums, when I found out I was pregnant with my first child, the idea of motherhood and everything that came with it was completely new to me. I had never even really held a baby, let alone been responsible for one’s existence. I was looking to the professionals to help, teach and guide me along the road to being the best mother I could be. Although at the time I was not aware of this, a lot of my concerns were the same as those experienced by someone with a learning disability – with one exception; I never assumed that the people caring for me, would be judging my ability and fitness as a parent. I never felt that I had to prove I was fit to keep my child. Which as our recent report “Hidden Voices of Maternity: Parents with Learning Disabilities Speak Out” shows, so many people in this demographic, do.

Parents with a learning disability often not only lack confidence in themselves but also in the system. They can feel they are constantly being judged and the fear of having their child taken away is never far from their mind:

“I was nervous and scared – I was worried that my child would be taken away”

“It feels like a crime to have a baby – people who drink and take drugs have babies, why shouldn’t a person with a learning disability have a child?”

“I’m always fearful that they will take my baby away”

Many are afraid to raise things, or to ask for help, for fear that they will be judged and have their child(ren) taken away from them. While it is important to stay pragmatic and understand that there are often legitimate reasons why people have their children taken away, at the same time, there really isn’t enough support for parents with learning disabilities. Particularly support for those parents that want to keep their children, and to learn how to do so in the right way.

In healthcare we often talk about people with learning disabilities having a different set of needs, but actually they don’t. Service users of all demographics want the same thing, providing high quality maternity care and positive experiences for people with learning disabilities doesn’t need a separate approach to one taken for any other service user – maternity or otherwise, it just needs time and consideration. Something that in such busy, cash strapped times it is hard to prioritise, but no less essential.

Aside from loving the experience of working with Catherine Carter and CHANGE, and the challenge of working on this, very fulfilling project, I learnt a great deal and I want to share with you some important steps in delivering high quality maternity care to parents with learning disabilities.  If we just put our minds to it and make time to understand service user needs, focusing on providing the right care for people, these steps and many more, will become an achievable reality and not an aspiration.


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Tags: learning disabilities, maternity, parents, patient experience, Person centred care.

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