Personal Child Health Record (PCHR) Insert for babies and children with Down’s syndrome – a reminder

by Stuart Mills, Information Officer

We thought it was time to write a post reminding everyone about the PCHR Insert.

We want to ensure babies and young children are as healthy as they can be. The PCHR Insert is one of the tools that can be used to help you and health professionals ensure your child’s health is monitored properly.

The PCHR Insert contains a list of basic minimum health checks for babies and children up to the age of 18 years.  Alongside the list is information about when the different health checks should be carried out. You can download the list of health checks here. If you feel that your child hasn’t had the right health checks, show the list to your GP, Paediatrician and/or Health Visitor.

There are some health conditions that are more common in people with Down’s syndrome. None of these health conditions are unique, they also appear in the rest of the population. Advances and increased access to medical care mean these health issues are treatable. It is important to bear in mind that some people with Down’s syndrome do not experience any health problems.  Improved medical care and a greater understanding of the health issues that are more common means that many people with Down’s syndrome are leading longer lives than ever before.

What is a PCHR? 

The PCHR (sometimes called the ‘Red Book’) is a health and development record given to all UK parents/carers at a child’s birth. The PCHR is the main record of a child’s health and development. The parent/carer keeps the PCHR, and health professionals should update the record each time the child is seen in a healthcare setting. You can find out more information about PCHRs here. 

What else does the PCHR Insert contain? 

The Insert contains information written by the UK Down Syndrome Medical Interest Group; this includes:

  • Advice about feeding, immunisation and growth
  • Your child’s development (learning new skills)
  • Health issues
  • Growth charts (covering birth to 18 years)
  • Sources of additional help and advice

Why do I need a ‘special’ insert for my child’s PCHR?

Babies and young children with Down’s syndrome have the same needs as any child. You should take your baby for routine health checks and immunisations in the usual way.

However, they may have some additional health needs that could affect their growth. This is why they will need some extra health checks (as detailed in the PCHR insert).

Children with Down’s syndrome tend to grow more slowly and are usually shorter than other children. This is why the PCHR Insert includes growth charts specifically for children with Down’s syndrome. Sometimes parents of babies and young children call us because they have been told by a health professional that their child is failing to thrive. In some of these cases the children are actually doing fine but alarm bells have been raised because the health professional is using a generic growth chart and not the growth chart for children with Down’s syndrome.

Each child with Down’s syndrome is different but generally their development is slower than that of other children. The insert has information about the usual progress of development in children with Down’s syndrome. You can download this information here.

Where can I get a copy of the PCHR Insert?

The Insert was updated in 2011 so make sure that you have the latest edition. The 2011 version gives more information about child development (e.g. ‘finding out about moving’, ‘finding out about hands’, ‘finding out about words’) and health issues than earlier versions. Remember to remind health professionals in your child’s life about the 2011 version of the Insert.

You can find information about ordering the Insert here.

We send a copy of the Insert to new parents who join the DSA (free of charge to parents with a child under 12 months of age). Information about joining us can be found here.

You can find lots more information on health issues on our website.

Photograph courtesy of Eleanora os on shutterstock.com