Radhika Holmström looks at campaigns to make pharmacists more aware of learning disabilities
Since Barry Jubraj’s son Alexander was born 11 years ago, the family has had to deal with a sometimes bewildering array of medication. Alexander has Down’s syndrome and severe learning disabilities (LDs), and also complex medical needs that have required regular visits to the pharmacist. As if that isn’t enough, the family then has to work out how best to administer them.
‘We get a mix of tablets and liquids,’ says Mr Jubraj. ‘We look at them and think “how on earth do you get those into him”?’
Mr Jubraj is also the senior clinical lecturer in medicines optimisation in the Institute of Pharmaceutical Science at King’s College London. He 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 LDs and their carers and also to raise awareness of overmedication in people with LDs and/or autism. It’s a highly welcome contribution to a wider campaign on the issue that has been going on for some time now.
The Disability Partnership’s Pharmacy Project reported in 2016 that although a lot of pharmacies are delivering a reasonably good service, there can be problems with communication – and not all pharmacists explain why or how a medicine should be taken.
A third of those surveyed agreed, with the same proportion feeling that their pharmacy was ‘neither good nor bad’ at meeting the needs of disabled customers.
‘People with a learning disability can face a number of barriers when visiting a pharmacy,’ says Sarah Coleman, policy officer for health at learning disability charity Mencap, which led the project. ‘These problems include 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.’
Alongside that, there’s a longstanding and widespread concern that too many people with LDs 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.
One report from Public Health England estimates the number is as high as 35,000. In July 2015, NHS England urged professionals to review their prescriptions for people with LDs and promised to spearhead a ‘call to action’ to tackle the issue.
‘It’s not necessarily that people are being given the wrong medication,’ says Danielle Adams, another pharmacist who took a leading role in the CPPE campaign, and whose son has an autism spectrum condition. ‘It may be that a short course is appropriate – but people remain on these drugs for years, unmonitored.’
People with LDs or autism spectrum conditions vary hugely; someone may be completely reliant on their carers to communicate on their behalf, or they might be living fairly independently and coming into the pharmacy alone.
‘People tend to think it’s all one thing,’ says Ms Adams. ‘You might not know if someone is on the spectrum.’ Not everyone with an autistic spectrum condition has a learning disability.
It is possible to make some generalisations. Lloyd Page, who has a learning disability and volunteers for Mencap, says: ‘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.’
‘Autism is a lifelong condition that affects how you see, communicate and relate to the world,’ adds Tim Nicholls of the National Autistic Society. ‘It can be very difficult to process information.’
On top of that, people with autism may get sensory overload – and not just in terms of noise or light; smells from a nearby café, for example, can make it hard for them to focus on what’s going on.
There’s also the issue of taking medication appropriately – or at all. Some people with LDs may have problems swallowing, or with the texture and taste of the medication (a lot of people with autism have strong rules about what they will and won’t eat). Some may not understand that they have to finish a course of antibiotics even after they feel better, or may not remember what they’re supposed to take when.
‘Evidence suggests that about 50% of medicines are not taken as intended,’ says Mr Jubraj. ‘There are very good reasons why that may be the case for people with LDs – and indeed the same goes for tired and stressed carers.’
As he points out, it’s also important to bear in mind that carers, especially within the family, can be utterly worn out. One of the videos in the CPPE programme shows him playing a role he knows extremely well, of an exhausted parent consulting a pharmacist about his son’s medication.
Equally, people who live independently or semi-independently can be extremely vulnerable. People can find it hard to make their needs known; resigned to being given information and instructions that they cannot understand; too exhausted to take in the information and not feeling confident about asking questions or pointing out that this medication simply isn’t feasible.
A programme for good practice
The CPPE campaign includes a six-week online learning programme; a hard-copy eight-hour distance learning programme, which was sent to all pharmacy professionals registered with the General Pharmaceutical Council (GPhC). It is still available on the website and there is an online hub where participants are able to share good practice.
Participants were also encouraged to make a pledge to stop over-medicating people with LDs or autism. The CPPE is planning to follow this up with other programmes, such as one for pharmacists working in general practice.
‘Our starting-point was NHS England’s call to action,’ says CPPE learning development manager Andrew Taylor. ‘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.’
This is clearly not always happening. ‘Sometimes people who want to ask questions have been told ‘we don’t do that here’. But what they want is nothing complex or extraordinary: just a couple of minutes to understand what they are supposed to be taking and why they are taking it.
Simple questions like “What is this, and what is it going to do to me?” and “If I don’t like taking it, what can I do about it?” Pharmacists worry that if they let a customer talk they’ll still be there 20 minutes later, but from the people we’ve consulted, that really isn’t the case.’
Asking and advising
Everyone agrees – the most important thing is to listen to the patient or carer. ‘Ask them what they think, and what would be most helpful,’ Mr Jubraj advises, rather than plunging in with advice. ‘If someone insists they’re fine, it’s still a good idea to make yourself available. Talk to the person with LDs too – so many don’t know they can ask their own questions. Medicines are still the main healthcare intervention for most people with LDs, and pharmacists have both expertise and availability.’
They can use that expertise in specific ways, he goes on. ‘If they do anticipate challenges, they can talk about potential solutions. For instance, can tablets be cut or crushed? Is there a liquid alternative? Our training is in the formulation, so we can make suggestions. Or we can suggest strategies for reminder charts and so on.
‘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. As a pharmacist, you should be able to comment, but if you don’t know the answer, look it up, do your research – maybe with the drug company – and make a judgment.’
Pharmacists are in a key position to work with other professionals, and also to help people whose medication is being reduced. David Gerrard is the advanced pharmacist practitioner managing the Stop Overmedicating People with a Learning Disability (STOMP) clinic in Sunderland.
‘If I see someone whose antipsychotic medication can be reduced step by step, it would be fantastic to be able to talk to the community pharmacist about how that programme is going and ask for their advice,’ he says.
‘We sit in our clinics and prescribe – it would be great if a pharmacist can pick up how well tolerated a medication is, and side-effects or swallowing difficulties. Does the patient have stiff arms or legs? Are their bladder or bowels affected? That’s the kind of information that is very useful to feed back to the GP.’
Be more curious
Mr Jubraj says: ‘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. They need to be more curious. We’re asking people to step back and ask those questions.’
The Making Time project was launched by NHS Leeds North Clinical Commissioning Group and Community Pharmacy West Yorkshire in June 2015 with the aim of giving people with LDs the best service possible – including sufficient time and explanation from their local pharmacy. It supports around 200 people.
‘We were invited to take part,’ explains pharmacist Katie Linstead, who works at a pharmacist near a large home for people with LDs. ‘We contacted the home and arranged appointments for people who were interested, which was most of the residents. We gave them a specially designed form and went through a medicines review. Then we audited things like smoking, drinking, activity and weight.
‘We learned very early on to look at different ways of communication. The leaflets we’ve been using are much more picture based, and that’s been particularly useful for things like healthy eating to explain different types of food and portion sizes. In fact, medicines are only a small part of this: it’s more about what we can do to help benefit their health, and even other activities we can direct them towards.
‘Before, these customers would have walked in and their carers would have dealt with us. Now because we know them, and what they are capable of, we can engage them in talking about their medicines. We’ve become more aware of the individual person, and it has completely changed the way we think about people with LDs.’
Mind your language
Learning disability sufferer and Mencap volunteer Mr Page says: ‘It’s really helpful when pharmacists use simple language and take time to explain about my tablets. 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.’
Things to do
•Find out if you can provide easy-read material about any medication a patient is regularly receiving.
•Explain if a medication is changing.
•Use simple words, short sentences and no jargon.
•Be prepared to be flexible.
•Don’t overload patients with information: focus on a few small points and repeat
•Let the patient know they can come back with any further questions.
•If the patient is distracted by smells or sounds, find a better place to talk to them.
•Remember that everyone finds personal questions – for instance, how their bowels are working – embarrassing.
•Write information down so that patients can refer to it later, or show it to a support worker.
•Be aware that the patient may need help to develop a schedule for taking medication.
•If a patient is coming in regularly, make an effort to get to know them.
•Talk to the patient as well as the carer.
Radhika Holmström is a freelance journalist