PIP for Spina Bifida - Can You Claim?

Most people with spina bifida qualify for PIP, often at enhanced rate for both components. The combination of mobility difficulties, bladder and bowel management, nerve damage, and associated conditions affects virtually every PIP activity. Yet some people with spina bifida underscore themselves because they've adapted to their limitations and consider them "normal."

Which PIP Activities Does Spina Bifida Affect?

Moving Around (Activity 12) - Depending on the level of the lesion, this ranges from slightly reduced walking distance to full wheelchair use. Even people with "mild" spina bifida often have reduced sensation in their feet, altered gait, and limited walking endurance. If you use crutches, a frame, or a wheelchair for any distance, describe exactly when and why.

Managing Toilet Needs (Activity 5) - Neurogenic bladder and bowel are extremely common. Self-catheterisation (intermittent or indwelling), managing leg bags or night bags, bowel management programmes (suppositories, digital evacuation, transanal irrigation), and dealing with accidents. Be completely specific about your routine - this is often the highest-scoring daily living activity.

Washing and Bathing (Activity 4) - Reduced lower limb function makes getting in and out of the bath dangerous. Reduced sensation means you may not feel water temperature accurately (burns risk). Skin inspection for pressure sores requires help if you can't see or reach affected areas.

Dressing (Activity 6) - Lower limb weakness makes putting on socks, shoes, and trousers difficult. If you wear orthotic devices (AFOs, KAFOs), putting these on adds significant time and may require help.

Managing Therapy (Activity 3) - Catheterisation routine, bowel programme, physiotherapy, pressure area care, urological and orthopaedic appointments, shunt monitoring if you have hydrocephalus. The combined weekly therapy time is substantial.

Preparing Food (Activity 1) - If you use a wheelchair in the kitchen, standard worktops and ovens are inaccessible. Standing tolerance is limited even with crutches. Carrying hot items while using mobility aids is dangerous.

Hydrocephalus and PIP

Many people with spina bifida also have hydrocephalus with a VP shunt. This adds headaches, cognitive difficulties, visual problems, and the ever-present risk of shunt malfunction. If you have hydrocephalus, claim for it as a separate condition - it affects reading (Activity 8), budgeting (Activity 10), communicating (Activity 7), and engaging with people (Activity 9).

What Evidence Helps?

• Spina bifida specialist or neurosurgeon letters
• Urologist letters about bladder management
• Orthopaedic consultant letters
• Continence nurse reports
• Physiotherapist reports
• Occupational therapist assessment
• Carer statement