Amelia (aged 9) was staying with her grandparents over the summer holidays when they noticed that her face didn’t look right and became increasingly concerned.
On Monday 21st July 2025 Amelia’s mum contacted her GP with a photo. He replied quickly saying he thought Amelia had developed Bell’s palsy and that she should be seen by a doctor as soon as possible. He then asked if Amelia could fully close her eye. Her grandparents took another photo and within 5 minutes he’d asked for them to take her to the nearest A&E. They had tried their own GP but there were no appointments available, so rather than continuing to wait for a call back from the NHS 111 service, they headed quickly to an urgent care centre.
The doctor there had never seen facial palsy in someone so young and ran a series of tests. Amelia and her family then transferred to another hospital better suited to paediatric care.
Amelia with her eye closed due to facial palsy
A missed diagnosis despite a known tick bite
Amelia’s mum remembered that Amelia had been bitten by a tick about a month prior, so her grandparents updated the hospital doctors. Unfortunately they were quite dismissive of the tick bite and didn’t test for Lyme disease. She was given an eye patch and eyedrops. It was suggested the facial palsy should clear within 3 weeks, and if not to book in for an MRI scan.
They also said a GP needed to check Amelia’s blood pressure after 48 hours and again after 2 weeks. Her grandparents’ GP surgery didn’t have a paediatric blood pressure cuff and suggested going back to the hospital, which was rather frustrating. There was also trouble with the hospital prescription for the eyedrops as the script wasn’t clear. Unfortunately this resulted in the pharmacy giving different drops. Amelia’s mum then had to ask her own GP to re-issue the drops based on the original hospital letter that she had been given.
As Amelia had not been tested for Lyme disease, her mum asked her own GP for advice when organising the 2 week blood pressure check. The GP was happy to test for Lyme but couldn’t do that at the practice. However, due to a breakdown in communication Amelia was only booked in for the blood pressure check.
Lyme disease signs and symptoms worsen
On Monday 28th July Amelia’s mum noticed bull’s-eye shaped erythema migrans (EM) rashes on Amelia as she was getting ready for a bath. She had 4 or 5, and one was particularly large.
The NHS 111 service was called at 7pm but Amelia’s mum did not feel that they appreciated the urgency and potential severity of her neurological symptoms in relation to Lyme disease, despite expressing her concerns. The service was very busy and it took until midnight for a non-clinical call handler to phone back.
Amelia’s mum decided to speak to her own GP in the morning as she didn’t trust the advice from the 111 team after they had not prioritised a child with such severe symptoms.
Medical awareness makes all the difference!
Amelia was seen straight away by her local GP practice on Tuesday 29th July. The practice used her case as a training case study for all staff as it was unusual to see facial palsy in such a young child. The GP carefully reviewed Amelia’s clinical history and the NICE Lyme disease guideline, then sought further advice and discussed a possible hospital admission to a hospital in Surrey.
Clinicians at the new hospital were very thorough and also referred to the NICE guideline, explaining that amoxicillin was appropriate for younger children instead of doxycycline, and that steroids for the facial palsy were not appropriate in this case. They also performed blood tests to check it was safe for Amelia to go home with oral antibiotics, rather than remaining in hospital for IV antibiotics instead. They then sent blood to be tested for Lyme disease, although the presence of EM rashes had confirmed the diagnosis.
The hospital were only able to give a week’s supply of the antibiotics needed but said to make sure the GP issued a further prescription for the remainder (which he did straight away on asking). The hospital team also booked in a follow-up appointment at the end of August to check on Amelia’s progress.
Amelia was very tired during her illness but responded well to the antibiotics. Her symptoms have now completely resolved and she is back to good health, confirmed by doctors at her recent appointment.
Amelia’s family feel frustrated by the variation in the quality of care that they experienced. Even this one example shows the numerous struggles Lyme patients can face when trying to get the correct diagnosis and treatment, and how easy it is for people to fall through the net. Notes from the first two hospitals were also not sent to the family’s GP which in addition has not helped communication or continuity of care.