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Toileting Advice and Adaptations

    • Family Opportunity Weekend - Leeds 2012 (90)

For any potty training or continence programme to be successful, the first priority is to make sure the individual feels secure. Secondly, comfort and safety are vital. For ordinary toileting (not including ACE or other bowel irrigation procedures), toileting time should not exceed 10 minutes.

In practice, this means that when using a toilet:

• feet should be supported on either the floor or a footrest.

• a comfortable toilet seat should be provided, and if necessary a padding on the seat that does not “stick” to the skin.

• the individual should be able to maintain good sitting balance for the necessary period of time.

• assistance should be within easy calling distance, and the person should only be left alone for short periods and/ or have access to an alarm.

Where good sitting balance is not possible, the child or adult should be supported by either a toilet/potty chair and appropriate rails, for which they have been individually assessed in the situation in which it is to be used. Provision of side and front hand rails can increase stability, safety and independence. Wherever possible, the simplest solution should be tried first.

An assessment should be undertaken by either the child’s or adult’s own occupational therapist; or a referral should be made to the appropriate agency. This would be the case for any equipment or adaptations which may assist with successful toileting.

Health & Safety

All carers who may be involved in assisting in any toilet training or continence care need to be fully aware of safety precautions; and trained in the correct positioning and movement of both chair and individual. This should include both voluntary and employed carers.

Many toilet/shower chairs have parts, including removable seat and castors that are necessary, but can be hazardous. Therefore all equipment should be checked regularly.

Moving and handling guidelines and regulations require that many service users and their carers use hoists. LOLER (Lifting Operations and Lifting Equipment Regulations) governs the use and care of all lifting equipment: existing, second hand, leased or new. LOLER states that all equipment and accessories used to lift people must be serviced every 6 months.


There is a vast array of equipment available to assist with toileting and continence, and to encourage independence. Wherever possible they should be tried out in situ, in the presence of an occupational therapist. If an item is to be purchased privately, because of the waiting list for assessment, it should at least be viewed, before costly provision is made.

Most areas now have Disabled Living Centres where members of the public can receive professional advice from occupational therapists and view or try out equipment. Often an appointment is required. It is essential that the limitations of the service user’s own bathroom or toilet, be made clear and taken into consideration. For example, most shower chairs require as much doorway width as a wheelchair and will need to be stored somewhere when not in use.


Fun for All the Family at Two Day Abseil Event

Pictured: Shine fundraiser Georgia Kelly, Heart FM's Kev Lawrence and Peterborough Cathedral events manager…

Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously.

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected.

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.


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