Guidelines from the UK’s National Institute for Health and Care Excellence (NICE) say that people with bladder and bowel problems from birth to 19 years old should have access to integrated, community-based paediatric continence service led by a specialist nurse.
In 2017, just one of the seven Welsh health boards provided the recommended service, according to a Freedom of Information inquiry by a campaign group, the Paediatric Continence Forum.
Across the UK, the figure was 41% – two out of every five equivalent bodies.
Research by BBC Wales suggests the situation in Wales has improved recently to reflect the UK average, with three health boards – Aneurin Bevan, Betsi Cadwaladr, and Cardiff and Vale – saying they provide the recommended service.
The other four boards said children were supported through a range of services such as school nurses, physiotherapists and consultants.
However, Dr Penny Dobson, founder and chair of the Paediatric Continence Forum, claimed there was a “failure” of provision and the situation still needed “radical improvement”.
“I think many will be suffering in silence,” she said.
“It’s a neglected area of child health but the effects on the child and the family – if it’s not addressed at an early stage – can be devastating.”
“Continence problems have a known link with mental health difficulties,” Dr Dobson added.
“Children can feel different, it affects their self-esteem, they can’t always go on social activities and it affects them at school. Bullying is a problem for many children with continence problems.”
If not properly assessed and treated, Dr Dobson said children could also end up in A&E with serious constipation, or kidney problems caused by urinary tract infection.
Where the full service provision does exist in Wales, parents claim it is overstretched.
Bethan (not her real name) is also in her first year at secondary school and has bladder incontinence which has led to anxiety problems.
“Only one friend knows, she’s really close. If I tell another friend she’ll probably tell everyone,” she says.
“Everyone will start asking – I don’t want to go through that hassle.”
Her mother says: “For young people, living with this is horrendous. There’s nothing funny about it. It affects their quality of life and they need support.
“Bethan has had times where’s she’s refused to go to school, leave the house or go anywhere because she’s hiding. That’s heartbreaking.”
She adds: “There’s not enough funding, not enough staff, not enough counselling services for children with bladder and bowel problems.
“It’s really important to remember that the children go to the clinic every couple of months and that’s the only chance they get to offload, to cry, to laugh and to bond with the health professional.
“It’s just so important to children’s general wellbeing.”
‘Lack of school support’
Children’s Commissioner for Wales Sally Holland said youngsters should have the same level of support wherever they live.
“If 40% of the health boards in Wales can meet the NICE guidelines, then there’s no reason why the others can’t as well,” she said.
Ms Holland added that families had contacted her with complaints about the lack of support in school.
“That reinforces the fact that this not just an issue in the home, it’s an issue wherever the child goes,” she said.
The Welsh Government said it expected health boards to deliver services in line with NICE guidelines.
“It is essential that children and young people with continence problems undergo a comprehensive assessment to identify underlying problems and ensure these conditions are diagnosed and treated by the appropriate clinician,” a spokesman said.