Hft | Access to healthcare – a parent’s experiences - LD Week 2018

This Learning Disability Awareness Week focuses on access to healthcare for people with learning disabilities. Family carer Madeleine Cowley shares her thoughts…


As well as being one of Hft’s Trustees, Madeleine is also mother to Thomas, 37, who has Down’s syndrome and complex needs. He has been supported by Hft since 2003.

Most of Thomas’s contact with medics is now organised by his service manager Julie, but both she and Madeleine agree that their experience of accessing healthcare for him has been largely positive.

“I’m aware that people have negative stories to tell, but that isn’t my experience,” says Madeleine. “I have found that medical staff readily accept the issues around Thomas’s disabilities and take them into account when making decisions about his treatment.”

Doctors take an interest in Thomas and make an effort to interact with him, even though he’s unable to hold a conversation. “Thomas is not articulate so he needs somebody to speak for him, but he’ll happily chat away about films and actors, and people tend to respond positively to his personality,” says Madeleine.

It helps when he is given longer appointments and when a nurse with specialist knowledge of learning disabilities is on hand to make sure the right information is available, and that staff have access to training.

While not available at all facilities, many hospitals do have a Learning Disability Liaison Nurse, and they can make the hospital stay or visit a lot smoother and easier for patients and their carers.

“We are all different”

Although this kind of understanding and awareness training is essential, it’s just as important to remember that every patient with learning disabilities is an individual, says Madeleine. Not everyone with the same condition will have the same needs, so it’s key that staff adjust their expectations and behaviour accordingly.

“Thomas’s disabilities are visible, and I think that helps. He is usually co-operative with medics – he can cope with the poking and prodding and being told what to do, but someone with autism might find that a lot harder,” she says.

Interestingly, the one negative experience that stands out for Madeleine involved not a medic, but a receptionist.

Thomas was in his 20s and attending a residential college, where he was registered with the GP.  When he needed urgent medical attention during the holidays, Madeleine took him to see their family doctor, who had known Thomas since he was four years old.

“The receptionist insisted that I fill in a form stating where Thomas was registered,” she explains. “I didn’t know, and I couldn’t get in touch with anyone at the college, but she was adamant we couldn’t get an appointment without completing the form.”

When Madeleine asked her to ask the doctor directly if he was willing to see Thomas, she screwed up the form and said aggressively, “Take a seat”.

“I understand that policy is important,” says Madeleine of the incident, “but sometimes all that’s needed is a little flexibility. Everyone involved in patient care, from admin staff through to the medical team, should be aware that people with learning disabilities may need special consideration”.

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