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) - Physiotherapy exercises you can only do at home with someone supervising or assisting count as therapy and are scored by the hours of that help under descriptors 3c to 3f. Shunt monitoring if you have hydrocephalus and skin checks for pressure areas are monitoring a health condition, and medication is medication: needing an aid or someone's help with those is descriptor 3b for 1 point however long it takes. Your catheterisation routine and bowel programme are scored under Activity 5, not here, and urological and orthopaedic appointments are not therapy at home.

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

Spina Bifida Types and Likely PIP Outcome

• Spina bifida occulta: Often asymptomatic and not PIP-qualifying. However, "tethered cord syndrome" arising from occulta can cause significant later-life symptoms (back pain, bladder/bowel issues, lower limb weakness) that may qualify.
• Meningocele: Less severe than myelomeningocele but still affects spinal cord function. Many qualify for standard daily living, some for enhanced.
• Myelomeningocele (spina bifida cystica): The most severe form. Very likely to qualify for enhanced daily living + enhanced mobility. The combination of paralysis below the lesion level, neurogenic bladder and bowel, hydrocephalus and orthopaedic complications affects every PIP activity.

The lesion level (where on the spine the defect occurs) predicts function:

• Sacral lesions (S1-S5): Walking usually possible, some bladder/bowel involvement
• Lower lumbar (L4-L5): Walking with AFOs or KAFOs, significant bladder/bowel involvement
• Mid lumbar (L1-L3): Often wheelchair users for distances, full bladder/bowel involvement
• Thoracic lesions: Almost always full-time wheelchair users, all activities affected

Activity 5 Detail for Spina Bifida

Neurogenic bladder/bowel from spina bifida is essentially the same picture as spinal cord injury. Typical Activity 5 scoring:

• Descriptor b (2 points): using a catheter, leg bag, sheath, stoma bag or pad - automatic
• Descriptor d (4 points): needing physical help to manage toilet needs, including support with transfers
• Descriptor e (6 points): needing help to manage incontinence of bladder OR bowel
• Descriptor f (8 points): needing help to manage incontinence of BOTH bladder AND bowel (most common in moderate-severe spina bifida)

Specify your routine: number of ISC catheterisations per day, type of bowel programme (suppositories, transanal irrigation, manual evacuation) and any help required. This makes the assessment objective rather than subjective.

Co-Morbid Conditions Common in Spina Bifida

• Hydrocephalus with VP shunt (around 80% of myelomeningocele cases) - shunt revision history, headaches, cognitive impact
• Chiari II malformation - causing swallowing difficulties, sleep apnoea, weakness
• Scoliosis and kyphosis - requiring bracing or surgery, affecting posture and seating tolerance
• Hip subluxation or dislocation - mobility and seating issues
• Foot and ankle deformities - club foot, calcaneus, equinus
• Pressure sores - from insensate skin and seating
• Tethered cord syndrome - progressive deterioration in function
• Latex allergy - significant in around 40% of myelomeningocele patients
• Learning difficulties - particularly with hydrocephalus, often affecting Activities 8 and 10
• Visual problems - strabismus, optic atrophy, hemianopia from hydrocephalus
• Mental health - depression and anxiety rates significantly higher than population average

The Adult Transition Problem

Children with spina bifida often have excellent multidisciplinary care under paediatric services. Adults often have fragmented or limited services. Many adults experience deteriorating function from undetected tethered cord, untreated complications or simply ageing changes. If your function has worsened over recent years, document this clearly on your PIP form - it may indicate you should be reviewed by adult spina bifida services. Shine Charity (shinecharity.org.uk) provides specialist adult support.

Frequently Asked Questions

I have spina bifida occulta and have always been told it doesn't affect anything. Why am I struggling now?

Occulta can develop tethered cord syndrome at any age. Symptoms include progressive back pain, leg weakness, foot deformities and bladder/bowel changes. Ask your GP for a neurosurgery referral. If diagnosed with symptomatic occulta or tethered cord, PIP becomes appropriate.

I have a VP shunt - what do I tell the assessor?

Mention current symptoms (headaches, nausea, balance issues, cognitive fog), shunt revision history and the constant vigilance you maintain for malfunction. Shunt failure is a medical emergency - the supervision requirement is similar to having a serious medical alert condition.

I work full-time and have spina bifida - can I still claim?

Yes. PIP is not work-tested. Many adults with spina bifida work in roles adapted around their condition. Describe daily living impact: bladder/bowel routines, mobility limits at home, the help you receive from your partner, the exhaustion at the end of the day.

Should I list every co-morbidity separately?

Yes, list everything. Spina bifida is a syndrome, not just a spine defect. The assessor needs to see hydrocephalus, scoliosis, urological conditions, latex allergy and any other complications. The combined impact is what scores.

I had a tethered cord release as a child - does that resolve things?

Sometimes only partially, and tethering can recur. If you have ongoing symptoms (pain, weakness, urinary issues), your function is not back to normal. Many people need repeated untethering procedures over their lifetime.

What if my mobility varies day to day?

Apply the majority of days test. If on most days you cannot walk more than 50m safely, reliably, repeatedly and in a reasonable time, descriptor c (8 points, unaided) or d (10 points, with an aid) applies, and e (12 points) if you cannot manage 20m. Document a typical week, not just your best or worst day.

Does using a wheelchair part-time still qualify for enhanced mobility?

Often yes. If you can walk short distances but use a wheelchair for anything longer (shopping, work, social events, holidays), you cannot reliably walk those distances on your own. Describe what you cannot do without the chair, and how far you can walk before needing it.