From first noticing concerns to getting an , and the right equipment, here is the realistic UK pathway most CP families travel. Each step links to the others — keep a folder of every letter, report and email.
| Step | Action | What to Do | Practical Direction | Area |
|---|---|---|---|---|
| 1 | Notice and record concerns | Write down milestones, falls, pain, feeding issues, fatigue, school difficulties, sleep and any videos that show movement concerns. | Use a dated diary. Keep school reports and professional letters. | Parent/Carer |
| 2 | Speak to , health visitor or school nurse | Ask for developmental review and referral if concerned. | Use wording: 'I am concerned about movement, tone, pain, fatigue and development. Please refer to child development/paediatrics.' | Health |
| 3 | Referral to child development/paediatrics | Child may see paediatrician, physiotherapist, , , orthotics, neurology or other specialists. | Ask for copies of all reports. | Health |
| 4 | Therapy assessments | Physio assesses movement/tone; assesses daily living, seating, hands, equipment; assesses communication, eating and swallowing. | Ask each professional for functional impact, not just diagnosis. | Health |
| 5 | Education support begins | Tell nursery/school about diagnosis or suspected needs. Ask for Support and reasonable adjustments. | Needs can be supported before diagnosis. | Education |
| 6 | Gather evidence | Collect clinic letters, therapy goals, school evidence, attendance, fatigue diary, behaviour logs, care needs, photos of equipment and parental reports. | Evidence should show frequency, severity, supervision and what happens without support. | Parent/Carer |
| 7 | Ask for assessment if school support is not enough | Parents, carers, schools, young people 16+, and professionals can request needs assessment. | Use Local Offer and templates. | Education |
| 8 | Apply for if child needs more care/supervision or has mobility needs than a child of same age | is based on needs, not diagnosis alone. A child can walk and still have serious mobility difficulties. | Use examples of worst days, distance, pain, safety, falls, fatigue and supervision. | Benefits |
| 9 | Social care assessment | Ask local authority children with disabilities team for child in need assessment/parent carer assessment if caring load is high. | This can support short breaks, equipment, care at home, direct payments or adaptations. | Social Care |
| 10 | Equipment and adaptations | Ask /physio/wheelchair service for equipment assessments; consider DFG for home adaptations. | Do not privately buy major equipment without professional advice where possible. | Equipment |
| 11 | Review and update | Needs change with growth, puberty, pain, school transitions and adulthood. | Request review if support no longer meets need. | All |
Sources: , NICE (NG62 & NG119), Scope, Contact, GOV.UK, , Citizens Advice. Always check linked organisations for the latest information.