Forgotten children: scheme to improve medicines use in young people with learning disabilities has lost momentum

Lila (not her real name) has atypical autism; non-verbal, moderate learning disabilities; epilepsy; and several other health problems that require medication. Her family has spent years fighting to get Lila the care they feel she needs.

“Her behaviours of concern were purely to do with her environment and health issues, and the NHS has been very slow to help because there seems to be this inbuilt prejudice that ‘challenging behaviour’ and autism is all a mental state, and so these people with learning disabilities do not need comprehensive health checks,” a family member explains.

“At the hospital, she was prescribed lorazepam, despite my protests against it as I believed it would not help her at all; there is no need for sedation, no need for restraint if the environment is right and her health needs are being met.”

It is people such as Lila that the STOMP-STAMP (Stopping the over medication of children and young people with a learning disability, autism or both/Supporting treatment and appropriate medication in paediatrics) campaign, launched by NHS England in 2018, was designed to help (see Box 1). One of its aims is to ensure that children and young people with a learning disability, autism, or both, are only prescribed psychotropic medicines when “clinically indicated”​[1]​.

Like Lila, when the needs of these children and young people are not met, they can present with challenging behaviours, and this often leads to inappropriate prescribing of psychotropic medicines, such as antipsychotics, antidepressants, anxiolytics and mood stabilisers​[2]​. These psychotropic medicines commonly continue long past their prescribing rationale owing to poor monitoring and review, as well as an unwillingness to challenge the original prescriber about the appropriateness of a particular medicine​[1]​.

Concerns about the use of psychotropic medicines in people with learning disabilities and autism reached a peak after the BBC television programme Panorama exposed shocking abuse at Winterbourne View private hospital, near Bristol, in 2011​[3,4]​. This led to a national drive to transform the support available for these individuals, and the launch of the original STOMP (Stopping the over medication of people with a learning disability, autism or both) campaign in 2016.

The 2016 STOMP campaign has had some success; figures published by Public Health England in 2019 show that the overall prescribing trends for antipsychotics and anxiolytics in adults with learning disabilities has changed from increasing, pre-STOMP, to decreasing, following STOMP.

However, although the original STOMP campaign purported to be an all-ages programme, it had no proper focus on children, according to Amanda Allard, assistant director of the Council for Disabled Children (CDC) — the umbrella body for the disabled children’s sector in the UK. The 2019 report stated that there were “hardly any changes in trends” in prescribing for children with autism, following the launch of STOMP, and children with learning disabilities were not covered by the data at all.

From STOMP to STOMP-STAMP

Within the children’s sector, concerns around medicines are not just about the prescribing of inappropriate medicines, but about access to the right medicines because, in many cases, they are not licensed for use in children.

“It wasn’t until [the campaign organisers] talked to paediatricians that they understood the complexities of the issues for children and young people, and the campaign became STOMP-STAMP,” explains Allard.

At the launch of the campaign, NHS England, the Royal College of Paediatrics and Child Health (RCPCH) and several other organisations (including the CDC and the British Academy of Childhood Disability), pledged to report regularly on the progress made, ensuring that they were held to account on their commitment.

But, two years on, evidence of the impact of STOMP-STAMP on children and young people is difficult to find. Despite multiple requests over several months, NHS England and NHS Improvement have, as of 26 February 2021, been unable to give any details on whether an evaluation of the campaign had been carried out or was planned. The RCPCH said that the person who led on the programme for the organisation no longer works there and it does not have any information on the campaign.

However, the need for such a programme prevails and organisations are “very concerned” about the ongoing issues surrounding the use of medicines in children with learning disabilities.

“The focus on this issue seems to have diminished and we are concerned that there continues to be insufficient progress,” a spokesperson for the Challenge Behaviour Foundation (CBF) — a charity focused  on children, young people and adults with severe learning disabilities, whose behaviour is described as ‘challenging’ — told The Pharmaceutical Journal.

Individuals around the country are working hard to put the values of the campaign into practice, but there needs to be a national drive to ensure this work becomes business as usual, so that the families of patients such as Lila do not have to fight to get the medicines they need and the care they deserve.

Incorporating STOMP/STAMP into practice

In Pooja Bharucha’s role as resident pharmacist at Great Ormond Street Hospital (GOSH) for Children NHS Foundation Trust, optimising medicines for children with learning disabilities or autism is a daily responsibility, but she had to use her initiative to find out about the STOMP/STAMP campaign. 

“It’s not as well known as the antimicrobial stewardship campaign, for example; it’s not so out there, but it’s just as important a topic.”

However, she says that the campaign and associated resources were helpful in her practice (see Box 2). “It’s taken the dust off something that’s really, really important,” she explains.

“Children with learning disabilities or autism can be extremely sensitive to changes that others may not worry so much about.

“Some of their sensitivities are related to sensory processes; a simple change in the way packaging feels can result in poor compliance and adherence to medicines,” she explains.  

Bharucha describes coming across a patient who would become really unsettled and refuse medicines when the sizes and colours administered to them as an inpatient were different to the ones they received at home.

“[In cases such as this], sprinkling the contents of capsules on food such as soft yoghurt, or in their favourite juice, may be appropriate,” she says.

Or, she adds, if a patient is frightened about the size of a tablet, but has a good swallowing reflex, “you could find out about which brands make tablets that are smaller in size or better in shape”.

Bharucha says that many healthcare professionals think it is difficult to make a difference in this patient group, but taking the time to sit down to get to know the patient and their journey can increase the chances of finding ways to challenge therapy and support their needs.

“In some instances, medicines started for acute behavioural changes have a stop date; however, the documentation could have been poor, or parents or carers may not have understood the instructions and its use has been ongoing.”

Bharucha says that patients in this group do not always have medication passports to support their involvement and adherence to medicines, or the passport does not reflect all of the changes that have happened.

“Where possible, all children with learning disabilities and autism should have a medication passport. Families and patients should be educated about its use and benefits, rather than just being given one upon discharge or following community-based appointments,” she says.

“Medication passports not only help them but can also help healthcare professionals review regular medicines and ensure that nothing has been missed off during transfer of care.

“It also allows families to document any preferences that help with adherence and involvement, for example: formulation preferences, colour, taste and side effects experienced,” she adds.

Adhering to medicines

A 2020 article in Drug and Therapeutics Bulletin, written by three pharmacists, brought to light the issue of how patients use their medicines at home and how emerging patient safety data from the home setting were “raising concerns”​[5]​.

It highlighted that some studies had estimated that nine out of every ten parents, carers and family members had administered a medicine incorrectly at some point — with errors including dosage mistakes, wrong medicine and incorrect route of administration.

“Though patients may have received basic instructions on how to take their medicines from doctors, pharmacists or nurses, rarely do professionals discuss exactly how taking the medicine formulation will work practically for them and their carer at home.”

As a carer of his son, Alexander, who has a severe learning disability, lead author of the article Barry Jubraj, associate director, medicines use & safety division, NHS Specialist Pharmacy Service and visiting senior lecturer at University College London, says that he has never been asked by a pharmacist, doctor or nurse how he gives his son his medicines or how he manages to take them.

“Anyone looking at Alexander should, if curious, be able to imagine that giving medicines is likely to present challenges because he has a learning disability, has thickener for his fluids prescribed and many of his medicines come as tablets,” says Jubraj.

“If clinicians could ‘think outside the box’, put two and two together and ask the question about medicines taking at home, they would be able to provide support and potentially identify unsafe practice.”

Aiste Navickaite, an advanced specialist mental health pharmacist for South West London and St George’s Mental Health NHS Trust, who won a Health Service Journal patient safety learning disabilities initiative of the year award in 2020, says that having spoken to carers who look after their family members at home, medicines administration is “definitely an issue”.

“One parent — I think his son was taking tablets, an inhaler, and liquid — told me nobody had ever asked him ‘how are you getting these medicines into them?’.

Stopping medicines

Further complicating the issue of medicines administration is that many children and adolescents with learning disabilities or autism have a variety of other comorbidities, meaning they can be taking several different medicines at once.

For example, Lila is prescribed the antiepileptic lacosamide, lansoprazole for reflux, a combined contraceptive pill for polycystic ovary syndrome (PCOS) and metformin to control blood sugar fluctuations related to her PCOS.  

Recognising this, some experts have highlighted the need for deprescribing guidance in this cohort of patients, similar to that provided for older patients.

“Deprescribing is actually far harder than prescribing,” explains Steve Tomlin, chief pharmacist at GOSH.

“It’s quite a leap of faith to say ‘I don’t think that’s been doing anything, I’m going to stop it’. But also, you’ve got to then change the mindset of the patient, and that’s where it becomes complex with people with learning disabilities.”

Tomlin adds that pharmacy should be driving the issue of deprescribing in this patient group. 

“It’s not always to do with polypharmacy. You could be on one drug and still need deprescribing. It goes back to that real understanding of drugs and all the effects that they might have. It’s understanding what that patient is going to feel if that drug stops. They might feel different. And that’s really important to understand.”

Rocking the boat

Bharucha says that, often, conversations around reviewing ongoing medicines are a challenge, since many prescribers are hesitant to instigate change when it comes to patients who have a learning disability.

“With this patient group, it’s almost like solving a bit of a puzzle when you first meet them. Most healthcare professionals realise that they need to alter their approach but are almost stumped as to how to go about supporting them; people are afraid to ‘rock the boat’.” 

However, psychotropic medicines can cause problems if they are taken for an unnecessarily prolonged period, or if they are taken for the wrong reasons or at high doses.

“Side effects may include feeling tired or ‘drugged up’ and gaining weight. There may also be a possibility of serious problems with physical health. Monitoring of symptoms and behaviour is therefore essential to ensure that the right medication is stopped, reviewed or started at the right time.

“This is one of the main messages that the STOMP-STAMP campaign highlights,” Bharucha adds.

An observational study carried out in 2018 by Swansea University suggested that children with intellectual disability or autism were more likely to be given antipsychotic medicines from a younger age than those without an intellectual disability, despite the fact that they do not have significantly higher rates of psychosis​[6]​.

The study results also showed that rates of respiratory disease, epilepsy and diabetes were higher after antipsychotic use for all participants. In those with intellectual disability or autism, the results also showed a higher rate of hospitalisation and injury in those prescribed antipsychotics.

Lila’s family say they would like to see the prescribing of psychotropic medicines changed so that GPs cannot prescribe them without a hospital consultant being involved in the process.

“Pharmacists should question these prescriptions. Care home managers should not be allowed to ask GPs for psychotropic medicines without there being thorough investigation as to why they are needed and patients should always be seen and examined.”

National campaign

Bharucha believes that the STOMP-STAMP campaign should be ramped up on social media and embedded into the training of pharmacy teams — in much the same way as antimicrobial stewardship, where everyone is encouraged to engage by making a simple pledge – in order to boost confidence in this area.

The CBF is also calling for awareness of the campaign to be promoted more widely.

“There is a whole range of resources available to support the programme, but these do not appear to be being widely and proactively used, and their use needs to be promoted,” a CBF spokesperson says.

“A national STOMP-STAMP programme must be in place, which provides focused leadership. This needs to be prioritised to ensure children, young people and adults with a learning disability do not continue to be subjected to over medication, with all the negative consequences that it entails.”

NHS England and the other organisations involved in the original pledge should also hold true on their promise to report regularly on any progress that has been made, as happened with the original STOMP campaign, to ensure that they can be held to account.

“It’s about raising awareness,” says Navickaite. “If everybody follows the [STAMP] guidance now, in 30 years, we won’t need STOMP.”