Health

Disabled children are likely to attend a number of hospital and doctor appointments, and depending on their condition or disability they might need extra support from professionals. 

Why families might have problems accessing health services 

• waiting for appointments can often be very distressing for children with additional needs 
• children/young people with neurological conditions or learning disabilities may be frightened by places they are unfamiliar with, and some may have sensory overload and become agitated 

• having to see different GPs means parents have to repeat their child’s considerable medical history and makes it difficult to establish a good patient/doctor relationship 
• this also means important changes in behaviour may be missed, or the child/young person is sent to A&E unnecessarily. 

How you can help families accessing health services 

• offer parents appointment times at the start of clinics when there is likely to be less of a wait 
• offer the option of waiting in a quiet room if one is available 

• offer parents the option of waiting in their car outside and being telephoned on their mobile when the doctor is nearly ready to see them 
• ensure staff in the practice are trained in disability awareness 
• offer double appointment times – so there is more time in the consultation to communicate with the child and parent and to find what has been happening since the child was last seen 
• listen to parent carers – they are often very knowledgeable about their child’s medical condition and know what is typical behaviour and how their child communicates pain or distress. 

You can also make use of a hospital passport. Families sometimes use hospital passports or communication passports to share information about their child with the health professionals involved. 

Ask the family to bring it with them when visiting the GP surgery so the practice finds out about the different professionals involved and treatments being carried out. 

The hospital passport is also useful in explaining things about the child, such as what might upset them, how they express themselves, routines they follow and how to tell if they are in pain. See examples of hospital passports  

How Contact can help 

We have lots of information and resources that you can share with families or direct them towards. 

Resources for professionals 

We’ve produced these guides to help health professionals make their services appropriate to families with disabled children: 

• Making GP practices more welcoming [PDF] – how to make your GP practice accessible to disabled children and their families 
• Health services for disabled children and young people [PDF] – information for health professionals 
• Concerned about your child [PDF] is useful when talking to families about developmental delay. Our poster about child development [PDF] encourages families to consult with you if their child is not reaching key milestones.  

Online information 

We have lots of advice and information on our website that you might want to share with parents, including: 

• medical condition directory 
• advice about getting a diagnosis 
• how parent participation is improving health services. 

Parent guides 

Our parent guides are free to download or to order in print from our helpline. The following guides are endorsed by the Royal College of Paediatrics and Child Health: 

• Helping your child’s sleep [PDF]. 40 to 80 per cent of children with additional needs have disordered settling and sleep patterns. 
• Potty/toilet training [PDF]. This guide provides advice to help parents toilet train their disabled child. 
• Feeding and eating [PDF]. A disabled child can find it more difficult to feed because of physical disability. A child with a learning disability may find it difficult to understand behaviour around eating and mealtimes. 

The following guide is approved by the Royal College of Psychiatrists: 

• Understanding your child’s behaviour [PDF]. Research shows that providing parents with strategies to manage their disabled child’s behaviour improves the physical and mental wellbeing of the whole family.