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Children with Complex Health Needs (including those with life-limiting conditions)

Continence information and support for parents and care staff: a research study

The purpose of the research was to find out what type of information parents and care staff need in order to respond confidently and effectively to the continence needs of children with complex health needs and life-limiting conditions.

This is an ERIC project which was funded by the Department of Health. We worked closely with the national charity ACT & Children’s Hospices UK called ‘Together for Short Lives’. Click here to view the website.

What we found

We found that most children and young people had some degree of bladder and bowel difficulties – and where these were not managed well it caused families significantly increased stress.

We also found gaps in the knowledge and understanding of care staff about the continence issues the children in their care were experiencing – and their understanding of the steps that could be taken to help them to either achieve or regain continence - or to manage their problem effectively and discretely.

We also discovered that not all children and young people are being properly assessed by their local continence service. This seems to be due to a combination of lack of knowledge of where to go locally – and in some cases an inadequate service from already stretched local provision.

Click here for more information about the project.

ERIC’s response

ERIC has published a leaflet for parents and carers, with information on what to ask for and the resources available. Download ERIC’s Guide for children with complex health needs (including those with life-limiting conditions).

ERIC organised two training seminars for care staff - in London and Birmingham giving delegates an understanding of what causes continence problems, what can be done – and how to be more alert to a potential loss of continence in a child or young person with complex health needs and life-limiting conditions.

To arrange a seminar for your region email ERIC’s Education and Media Co-ordinator, Natasha Collins-Daniel or visit the training section of ERIC’s website.

Becoming toilet trained and what can go wrong

The process of becoming toilet trained is a challenge for all children – for those with complex health needs and life-limiting conditions it can be especially difficult and for some, impossible to achieve.

Also, those children and young people who have gained bladder and bowel control may later lose it as a result of their illness or disability.

Click here to view slides.

All children will need a continence assessment: a check to make sure that there is no underlying bladder or bowel problem

For example:

Constipation. Some children with constipation also have ‘overflow soiling’. This is due to over-stretching of the lower part of the bowel due to the constipation. As a result they lose the feeling of the ‘need to go’ and have no control over the soiling. These children often ‘poo’ a lot (at least 2-3 episodes a day), so one can be misled into believing that constipation is not the cause

An overactive or ‘twitchy’ bladder. The symptoms of this are; a sudden and urgent need to go to the toilet; a need to go more often than the average 5- 7 times a day

Dysfunctional voiding. This is when the bladder does not fully empty. The urine left in the bladder can cause a urinary tract infection. Children with this problem can have wetting episodes and may have a problem with constipation as well

Nocturnal enuresis or bedwetting. Bedwetting is a common problem in childhood and is not usually associated with an underlying medical problem. However some children may wet the bed at night as a result of an underlying condition, and if so, this should be treated

There are treatments for all these conditions (for example, medication and toileting programmes for constipation, a bladder training programme and medication for a daytime bladder problem – and the bedwetting alarm or medication for bedwetting).

However it is vital that the treatment is the right one for the individual child and family – and the family are given support and guidance from a professional to complete the treatment programme - as this can take many months.

Click to download the general continence assessment for parents.

Choosing the best way forward if continence cannot be achieved and therefore needs to be managed

There are a number of options to help the child or young person manage their continence problem in a discrete way. However, again it is important that the most appropriate method is chosen and a Continence Care Plan is put together following a continence assessment from a specialist health visitor or the local continence service.

This Plan should include details of the programme agreed with the child and family, the information that will be provided and who will support the family and how often home visits/meetings outside the home will take place.

Click here to view slides.

What can be done: children who once gained bladder and bowel control then lost control as a result of their illness or disability

This is distressing for the child and young person concerned and their parents. The difficult task for the parent is to identify any changes to the bladder and bowel habits –and to seek advice and support at an early stage.

A Continence Care Plan is again important – so that care staff can help to manage the situation in a consistent and sensitive way.

The effect of some medicines on the bladder and bowel

A Continence Assessment should include a review of all medication that the child is receiving. Some medications may alter/affect the way the child bladder and bowel work regardless of whether continence has been achieved.

Analgesics such as opioids can cause constipation which should then be managed accordingly along side other medications and their side-effects.

Anti-spasmodic medication may also alter the way the bowel and the bladder empties, as will anti-muscarines and drugs believed to be direct relaxants of intestinal smooth muscle.

A detailed knowledge of the pharmacokinetics of the child’s medication and a continuing evaluation of bladder and bowel function for individual children will reduce potentially distressing symptoms of incontinence. Likewise the need to plan for such eventualities such as providing appropriate containment products will give reassurance to both child and family.

What to expect from your local specialist paediatric continence adviser/ specialist health visitor/ school nurse / specialist nurse

An assessment of your child’s continence needs. This may be at the continence clinic or school, or via a home visit
Sufficient information and support in order to carry out a programme to maintain bladder and bowel control.
Good links with the other professionals with whom you are involved – such as the hospital services and the school
A Continence Care Plan, with a clear outline of what the family can expect from the continence service, what the family is to do, the timescale and when progress will be reviewed
Referral for an assessment to an occupational therapist, to assess for equipment, such as a potty chair, or toilet adaptations (for children with reduced balance and mobility)
An adequate supply of the right type of continence product to suit the child’s needs and ‘signposting’ to benefits, such as the Disability Living Allowance

Managing in school

Children with continence difficulties will need additional, sensitive and discretely- delivered help with their continence needs at school.

These should be identified and written down as part of a School Health Care Plan following a meeting between the family, school, the school nurse – and the paediatric continence adviser or other key professional working with your family (clearly there should be consistency with the Continence Care Plan, as above).

Particular needs at school are:

· Easy access to quality drinking water. For good health children need to drink throughout the day – and this is particularly important for children and young people with bladder and bowel difficulties (The National Institute for Health and Clinical Excellence ( NICE) recommend 1,000-1,400 mls as the daily intake for children 4-8years and 1,200-2,300 mls for children 9-13years. Visit the website.

Good quality toilet facilities. If there are difficulties here the ERIC campaign called ‘Bog Standard’ provides information: visit the website
Special facilities and privacy for hand washing and disposal of pads and any equipment
Support staff to help with toileting and changing clothes
Sufficient aids and adaptations e.g. handrails and hoists.

For Guidance Notes for Schools on toileting/continence issues, including toileting charts, a toilet training programme and a sample Continence Management Plan, see PromoCon website.

Role of the hospice/hospice at home key worker: competencies

To be able to identify when toilet training/continence is a problem and to be able to help the family gain an assessment from their local paediatric continence service
To have a general knowledge of what a continence assessment consists of and the treatment/management options
To be able to identify when the child or young person and family are having difficulty in carrying out a continence treatment/management programme and need more support from the paediatric continence service

Role of continence lead within each hospice/hospice at home scheme

In order to assist the above process, it is planned that each hospice/hospice at home scheme has a designated ‘continence lead’ whose job it is to link into ERIC and ensure that their hospice colleagues are kept up to date on continence issues.

Click here for further information and resources