For Families and Carers : Personal Child Health Record Insert for babies and children

Personal Child Health Record (PCHR) insert for babies and children with Down’s syndrome

 

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.

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 (e.g. heart problems, thyroid deficiency, difficulty feeding, coeliac disease, and disturbed sleep). This is why they will need some extra health checks (as detailed in the PCHR insert).  This list of examples might look scary but remember that not every child with Down’s syndrome will have all these health issues.

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). Information about joining us can be found here

The PCHR Insert is one of the tools that can be used to hopefully ensure that your child’s health and wellbeing are maintained. For those with teenagers with Down’s syndrome, did you know that if they are 14 years or older they can ask their GP for a free annual health check? Further information here