How little Alesha's life has improved by switching from liquid to pill medication
Aleshagul Khan spends as much time in the Noah’s Ark Children’s Hospital for Wales as she does in her own home. Born with a genetic kidney disease, the seven-year-old needs to visit the nurses up to four times each week for lengthy dialysis treatment.
To make matters worse, her condition limits her daily fluid intake to just 600ml, around two-and-a-half cups. If she drinks anything over that amount she bloats, gets very uncomfortable and requires even more dialysis to remove the excess water in her blood.
“Most parents have arguments with their children over their behaviour or not putting their toys away - my fight is telling my daughter not to drink too much,” explained her mum Shehlagul Niaz, from Grangetown, Cardiff. “She can’t start her morning without a cup of tea, and her daily fluid limit also includes things like yoghurts and custard, so I have to watch her constantly. It’s very hard.”
For many years, Alesha’s daily fluid allowance also included her liquid medications which she needed frequently to bring down her blood pressure and help with her bones. “That inevitably had a big impact on my daughter being able to drink her favourite drinks - or simply drink when she was actually thirsty,” Shehlagul added.
But thanks to KidzMedz Cymru, a pioneering Wales-first scheme which is teaching children over the age of five how safely swallow tablets and capsules, Alesha is now able to drink more of the things she likes.
“She used to have all these [liquid] medications and some of them would taste horrendous, so Alesha would want a drink afterwards which would have to be added to her daily allowance. Now she’s learnt to take three or four pills at once in just one or two sips. I’m no longer worried about her asking for an extra drink after every single medication.”
Watch Aleshagul and Shehlagul share their story:
Shehlagul said Alesha, who loves jumping on her trampoline and anything pink, has taken all her treatments in her stride. “She’s such a happy little girl. She never complains and she takes her medication with a smile on her face,” she added. “She’s on a waiting list for a kidney transplant, so until a match is found she’ll continue to have the dialysis and her medication.”
She concluded: “Staff at the children’s hospital are like a second family. They’re the most amazing team. They help out wherever they can and Alesha has so much fun. She has dance lessons here and music therapy sessions. They have fantastic volunteers who will come in just to play with her.”
KidzMedz Cymru launched at the Noah’s Ark Children’s Hospital for Wales in June 2023 after receiving a grant from the Cardiff & Vale Health Charity Staff Lottery fund. Over the next 12 months, around 400 children and young people will learn how to safely swallow tablets and capsules.
It is hoped the use of prescribed liquid medicines in Cardiff and Vale University Health Board will be reduced by 40%. After the initial 12-month trial period, the aim is for KidzMedz Cymru to be rolled out across Wales.
Experts at the children’s hospital believe pills have numerous advantages over liquid medicine for patients, their carers and healthcare professionals:
For children and young people, pills contain less sugar and are less sickly;
Studies show that children who swallow pills tend to have better adherence to their medication regimes;
For carers, pills have a longer shelf-life, do not require a fridge for storage, are easier to transport and more readily available in local pharmacies;
Prescribers are less prone to errors when writing prescriptions and can prescribe larger quantities;
For pharmacists, pills are more commonly stocked in local pharmacies compared to liquids, and are far cheaper for supplier, the NHS and the patient
Bethan Davies, Lead Pharmacist at the Noah’s Ark Children’s Hospital for Wales, said: “We’ve had great success with KidzMedz so far, particularly with one patient who received his medicines previously through a gastrostomy. By learning how to take tablets and capsules, we have been able to remove the gastrostomy and his quality of life has improved greatly. His family have recently been able to take him on holiday for the first time.
“We hope to continue seeing great success from this project and are aiming to have 400 children learning to take tablets and capsules by the end of the year.”
Children and young people are being taught how to safely swallow pills using an evidence-based six-step technique. They start off by choosing a drink of their choice - either water or sugar-free fruit juice - and will gradually work through a series of different sized sweets.
Once they complete the programme and can safely and confidently swallow tablets or capsules, they will receive an education kit containing a pill packet, water bottle and certificate. Parents and carers will also receive an information leaflet.
The scheme was first developed at the Great North Children’s Hospital in Newcastle in 2020 and has won the NHS Sustainability Award, the HSJ Value Award for Pharmacy and Optimisation and the Bright Ideas in Health Award for Demonstrating an Impact upon Quality Improvement.
For any questions about the programme, please email KidzMedz.Cymru.Cav@wales.nhs.uk