“It’s always hard, when you have a clinical background, to be neutral when you’re on the other end of it,” says Barry Jubraj. “I have my good stories and my more difficult ones. But the thing that strikes me in my dealings with community pharmacists is that some of them can seem to be afraid of us.”

In his day job, Jubraj is the Clinical Senior Lecturer in Medicines Optimisation at King’s College London's Institute of Pharmaceutical Science. He’s also the parent of a child with severe learning disabilities and complex medical needs. As a result, he’s fully familiar with the range of issues that confront people with learning disabilities and their carers when they’re in the pharmacy – or indeed trying to administer the medications that have been prescribed for them. “We get a mix of tablets, and liquids, and you look at the medicines and think ‘how on earth do you get those into him’? But nobody has ever asked.”

“It can be very difficult for people with a learning disability to explain how they feel if they feel ill, or what tablets they need,” agrees Lloyd Page, who has a learning disability and volunteers for Mencap.

Jubraj is one of the people behind the campaign from the Centre for Pharmacy Postgraduate Education (CPPE), based at the University of Manchester, to train pharmacists in supporting people with learning disabilities and their carers and also raise awareness of overmedication for people with learning disabilities and/or autism.

Communication, medication, administration

“People with a learning disability can face a number of barriers when visiting a pharmacy, including a lack of support to manage their medicines independently, a lack of accessible information, difficulties in communicating with pharmacists and a lack of knowledge among pharmacists of the health needs of disabled people,” says Sarah Coleman, policy officer for health at learning disability charity Mencap. Last year, the charity coordinated the Disability Partnership's Pharmacy Project, which found that although a lot of pharmacies are delivering a reasonably good service, there can be problems with communication and not all pharmacists explain the purpose of a medication or how it should be taken. “If pharmacists use confusing language and people with a learning disability are rushed, it can be hard to understand. It’s important that pharmacists take extra time to help people with a learning disability,” Page points out.

"50 percent of medicines are not taken as intended."

This is particularly important because of the long-standing issue of what medications people with learning disabilities actually receive. In 2015, NHS England urged professionals to review their prescriptions for people with learning disabilities and promised to spearhead a ‘call to action’ to tackle the issue. One report from Public Health England estimates around 35,000 people a year are being prescribed antipsychotics and/or antidepressants – often more than one medicine in the same class – without a clear clinical justification, and for a long time without adequate review.

To add to that problem, many people are simply not taking their medication properly; either because it has never been explained to them properly, or because they physically can’t. Some may not understand that they have to finish a course of antibiotics even after they feel better (as plenty of people without learning disabilities don’t), or they may not remember what they’re supposed to take when. Or they may have problems swallowing, or problems with the texture and taste of the medication. “Evidence suggests that about 50 percent of medicines are not taken as intended’, says Jubraj. “There are some very good reasons why that may be the case for people with learning disabilities.” And, he adds, many carers, especially family carers, are so exhausted and stressed that they may not have the energy to fight a losing battle, or may forget of their own accord.

There are some pockets of excellent practice, such as the Making Time pharmacy project in the Leeds area, and the Stop Overmedicating People with a Learning Disability (STOMP) initiatives. Some are pharmacist-led – but the overall picture is pretty fragmented, hence the CPPE campaign.

Tackling the issue

The CPPE campaign includes a six-week online learning programme (most of which is still up online); a hard copy distance eight-hour learning programme, which was sent to all General Pharmaceutical Council registered pharmacy professionals and can also be downloaded from the website; and an online ‘hub’ where participants are able to share good practice.

A lot of the emphasis is on explaining that many customers don’t require a vast amount of time and detail: just a few moments in a private place, taken at their own pace, can make all the difference. So can thinking flexibly about whether tablets can be crushed, or liquid alternatives or even other formulations might work more effectively for this particular individual. “Our starting-point was NHS England’s call to action,” says CPPE learning development manager Andrew Taylor. “For this campaign, we were keen to make sure that we take the learner through that journey of learning and reflecting. It focuses particularly on the issue of talking to people with a learning disability and to carers – it’s not so easy to change the issue of over-prescription but it’s very easy to ask someone how they’re doing.” The CPPE is planning to follow this up with other niche programmes, such as one for pharmacists working in general practice.

In addition, pharmacists are also encouraged to make a pledge to stop over-medicating people with learning disabilities and/or autism; clearly, they cannot control the prescriptions themselves, but they can keep an eye on what is being prescribed – and also, importantly, they can talk customers through the process and what to expect if their medication is being changed or reduced.

“I’ve come up with my own methods because I’m a pharmacist, but there are millions of parents and carers who are trying to work these things out for themselves,” Jubraj concludes. “Medicines are still the main healthcare intervention for most people with learning disabilities, and pharmacists have both expertise and availability.”

Image: Lloyd Page c/o Mencap