Wheelchairs and weight: 'I haven't been able to weigh myself for 22 years'

Weight management is a sensitive topic. Nevertheless, the measurement is often used as a marker to inform medical decisions or for someone's personal interest. But for many wheelchair users, accessing scales has proved near impossible.

"The last time I was weighed was about 22 years ago, " Lizzie tells the BBC podcast, Access All. "I think I was about 15."

As a result, now aged 37, Lizzie has been through three successful pregnancies, all without knowing how her body was adapting or how her baby was growing.

Based in Devon, she has a degenerative muscle-related impairment and uses a wheelchair. This makes weighing herself on traditional bathroom scales, which require you to stand still and independently on a small platform, a challenge - although she has given it a go.

It involves "sitting down really quickly, lifting my feet up, which is like a ridiculous yoga pose, and trying to balance," Lizzie says. Unsurprisingly, the reading is never accurate.

LISTEN: You can hear more from Lizzie, Dr Georgie Budd and Gillian on the latest episode of Access All.

There is equipment out there to help wheelchair users, like Lizzie. Chair scales enable someone to sit on a seat which records their weight and there are similar bed and hoist versions too. There are also wheel-on scales which are very large and involve subtracting the weight of the chair afterwards.

But none of these seem widely available.

It's not just in medical settings. Over the past 13 years and after serving 100,000 customers, Ability Superstore, which calls itself the "home of mobility aids" in the UK, said it had never been asked for accessible scales. It believes that comes down to cost - with accessible versions often retailing for hundreds of pounds.

Comparatively, your average, everyday scales, can be bought for as little as £9.99.

It means many disabled people are going without this benchmark a lot of the population take for granted.

Dr Georgie Budd, who is based in Merthyr Tydfil, says this worries her. A wheelchair user herself she appreciates how difficult it can be for people to access scales.

"There's a lot of things that we use weight for in health - anaesthetics and drug dosing - and just to keep an eye on it as well for someone's general health. During pregnancy for example, if someone was losing weight I, as a GP, would actually be really quite concerned," she says.

Although people can keep across their weight by feeling how their clothes fit, Georgie says this can be inaccurate, especially when clothes are rarely tailored with wheelchair users in mind.

But Dr Georgie says weight management can be crucial, especially for those who use wheelchairs.

"You're not using your big leg muscles anymore so you're not burning as many calories and access to actually exercising as a disabled person is less than I would like it to be."

She says another key factor that is lost due to inaccessibility is motivation.

Gillian Morphy knows about that. She had her right leg amputated a year ago due to dystonia, which causes uncontrolled and sometimes painful muscle movements. She is trying to lose weight, but was last weighed at her local amputee clinic six months ago.

"Every [medical] appointment you go to you're told 'you've got to lose weight'. But we're not helped, nobody's telling me how," she says.

Gillian says losing weight has become even more important to her since the amputation. "I don't want to be putting so much weight through my left leg because I don't want to cause any problems there."

She says she would like to be weighed weekly to "know which direction I'm heading in".

Gillian can get weighed at the amputee clinic, but it's not somewhere she can just drop into plus she relies on patient transport which can involve a lot of waiting around. "For two minutes on the scales, that could take me six hours," she says.

More generally, there seems to be little information out there on how Gillian, Lizzie and their medical teams can measure weight and access scales.

Neither NHS England nor the government have guidance for doctors nor advice on what equipment to use and no figures are kept on how many hospitals have access to such equipment and where they are.

The National Institute for Health and Care Excellence (NICE) previously considered the issue in 2014 and requested more research be carried out. But so far nothing has been started.

Lizzie's healthcare trust - Devon Integrated Care Board, which covers Devon, Torbay and Plymouth - says it does have equipment which enables weight to be measured "safely and with dignity". But Lizzie is yet to have been offered the use of it.

Gillian wonders if more simple solutions could be found, such as doctor surgeries clubbing together to buy accessible scales for the local area.

Her next appointment at the amputee clinic is fast approaching and, unlike many people, she's looking forward to getting on the scales and seeing what progress she has made with losing weight.

"After that it won't be until Christmas that I get weighed, and then it could be another six months."

You can listen to the podcast and find information and support on the BBC Access All page. If you've got a story get in touch with Beth by emailing [email protected].