Thinking about an intensive therapy programme? 12 questions to ask first
A calm, practical checklist for UK families considering intensive or block therapy programmes for a child with PURA syndrome, covering qualifications, safety, costs and how it fits with NHS care.
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.
A big decision for any family
Intensive programmes can mean travel, time off work and significant cost. Many families find them valuable. Others decide they aren't right for their child at that moment. Both are reasonable choices. We know of no published trials of intensive therapy specifically in PURA syndrome, and no therapy can cure it. These questions are meant to help you decide calmly. They aren't a recommendation for or against.
About the people
1. Are the therapists registered with the HCPC? Conductive educators and some other practitioners have different training, so ask what qualifications they hold.
2. Have they worked with children with very low muscle tone, complex epilepsy or rare genetic conditions?
3. Who is the lead clinician, and how can we contact them between blocks?
About safety
4. How do they manage seizures, breathing difficulties, reflux or feeding during sessions?
5. Will they read your child's medical information and the PURA Foundation's clinician handout?
6. Has your child's own medical team said that the programme, and any equipment such as suspension systems, is suitable for them?
About goals and results
7. What goals will we agree at the start, and how will progress be measured?
8. Will they write a report we can share with our NHS therapists and school?
9. What should we carry on at home afterwards, and is that realistic for our family?
About cost and fit
10. What is the full cost, including travel, accommodation and any equipment? Are grants available? Some centres, such as Footsteps, link to a charity that helps families who can't afford a programme.
11. Can we start with an assessment or a short block before committing?
12. What will we stop or reduce to make space? Rest and family life matter too.
A word of caution
Be wary of any provider that promises a cure, uses dramatic before-and-after claims, or discourages you from following your child's medical advice. Our listing policy excludes providers selling unproven treatments.
Questions families ask
Are there UK centres with PURA experience?
We have not found a UK intensive centre that publicly mentions PURA experience yet. Two centres abroad do, and they are listed under PURA organisations & specialists for information.
Sources
Checked 1 November 2026. Rules, rates and services change, so always check the latest version.
- https://www.hcpc-uk.org/check-the-register/
- https://purasyndrome.org/for-families/social-emotional-support/
- https://www.footstepscentre.com/
This article is part of our guide to Intensive therapy centres. See all intensive therapy listings →