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Made by a PURA parent in the UK. Information only, not medical advice. Read our disclaimer.
Seating, mobility & equipment

Toileting and continence for children with PURA syndrome

A gentle, practical UK guide to toilet training and continence for children with PURA syndrome and complex needs: constipation first, getting ready, professional help, continence products, school and getting out and about.

By PURA Family Directory team · published

Information only, not medical advice. Every child with PURA syndrome is different. Please talk to your child's own doctors and therapists before making decisions about their care. In an emergency call 999; for urgent advice call NHS 111. Our disclaimer.

Easy read In short

  • Many disabled children can learn some toilet skills. It may take longer.
  • Check for constipation first. Ask your GP if you’re worried.
  • Ask your GP, health visitor or school nurse about the bladder and bowel service.
  • Pads from the NHS come after an assessment, usually from age 5.
  • Changing Places toilets have a hoist and a changing bench.

Read the full guide ↓

Every child deserves the chance to learn

The NHS says children with special educational needs and disabilities can still learn toileting skills, though they may need more time or extra support (NHS). The children’s bowel and bladder charity ERIC says some children with complex needs may never be fully continent, but even children with significant learning, mobility or communication difficulties can often reach a good level, and every child has the right to be helped to do their best and keep their dignity (ERIC).

Whatever your child’s path, the aim is the same: a healthy bladder and bowel, comfort, and as much independence as is right for them.

Check for constipation first

Constipation is common in PURA syndrome. In a 2021 study of people with PURA, about 1 in 5 had it. ERIC says it is even more common in children with additional needs, for reasons such as limited mobility, communication difficulties, a limited diet, low fluid intake or medicines (ERIC).

The NHS lists signs such as fewer than 3 poos in a week, large hard poos or small pellets, straining or pain, and soiled pants from runny poo leaking around hard poo (NHS). It says to see a GP and get help early, and to treat constipation before stopping nappies. Our reflux and constipation guide has questions to take along.

Getting ready

ERIC suggests a simple chart of when your child wees and poos, then a toilet readiness check, to work out the right time to start and what to work on first (ERIC). Its advice is to give children with additional needs the same chances to progress as any other child.

Sitting safely. Your child needs to feel secure on the potty or toilet, with their feet supported. An occupational therapist can assess for a supportive toilet seat, frame or adapted toilet if needed.

A routine. The NHS suggests regular sitting after meals or before bed, with feet flat on the floor or a step, and staying calm and positive whatever happens (NHS).

Communication. Use your child’s own way of communicating, such as a sign, symbol, photo or AAC button for “toilet”, and use it every time.

Asking for professional help

Ask your GP, health visitor or school nurse about your local children’s bladder and bowel (continence) service. Bladder & Bowel UK’s national guidance says services shouldn’t set a minimum age for disabled children to get assessment and support, and that children expected to find toilet training hard should have the chance of early assessment, even from their first year (Bladder & Bowel UK).

ERIC’s pathway says any toilet training plan should be shared with nursery, school and everyone who looks after your child, so they all use the same routine (ERIC).

Continence products (pads)

Pads or nappies from the NHS are not automatic. Bladder & Bowel UK’s guidance says products are supplied after a full assessment by a health professional, not before a child’s fifth birthday, and usually after at least six months of a supported toilet skills programme, unless that isn’t appropriate for the child. It says giving products automatically at a certain age isn’t appropriate (Bladder & Bowel UK).

Local services follow their own policies, so ask yours how it works. Bladder & Bowel UK’s children’s library explains the different kinds of products, including washable ones.

At home: equipment and adaptations

Bathing and toileting equipment, a hoist or a level-access shower can make care safer for you both. Ask your council’s occupational therapist for an assessment. Bigger changes to your home may be covered by a Disabled Facilities Grant (or your council in Scotland). Our grants and funding finder lists the options in each nation.

Out and about

Changing Places toilets have more space and the right equipment, including a height-adjustable changing bench and a ceiling hoist. Their website has a map, so you can plan days out. A small bag with spare clothes, pads, wipes and a changing mat helps too.

Questions families ask

Will my child get free nappies when they turn 5?

Not automatically. Bladder & Bowel UK’s guidance says products come after a full assessment and, usually, at least six months of supported toilet training. Ask your GP, health visitor or school nurse for a referral to the bladder and bowel service.

Is it too late to start toilet training an older child?

No. ERIC says older children can still be helped to reach their toileting potential. The starting point is a healthy bladder and bowel.

Who should I ask for help?

Your GP, health visitor or school nurse can refer you to the children’s bladder and bowel service. An occupational therapist can help with seating and equipment.

Sources

Checked 1 Nov 2026. Rules, rates and services change, so always check the latest version.

Print the checklist

Take our one-page “what to ask” list to the appointment: Wheelchair and seating assessment.

This article is part of our guide to Seating, mobility & equipment. See all equipment listings →

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