Pain 
The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments.
You can download the PPP tool as a pdf or order printed copies from their website.
Other Commons Problems Associated with Trisomy 13/18
Babies with Trisomy 13/18 often have a low birth weight, low set ears, heart and eye defects, and unusual palm and fingertip patterns.
The following problems may be present: abdominal defects (omphalocele); cleft lip, and palate; back of head enlarged (occiput); clenched fists, and overlapping index fingers; club/rocker bottomed feet; spina bifida; spine defect (meningomyelocele); defects of the scalp, diaphragm, lungs, kidneys, and ureter; small mouth and jaw; joint contractions (arthrogrypo).
Health Issues- Scotland 
If you are caring for a child with Exceptional Health Needs in Scotland then the CEN website is a valuable source of information and resources. http://www.cen.scot.nhs.uk/
Families whose children spend time in hospital or who are admitted to hospital in emergency might want to look at the sections on care planning procedures, which you may want to discuss with professionals working with your child.
As a partner organisation, SOFT UK also has the opportunity to participate in their research programmes, which help inform policy and practice in the NHS and the wider multi-agency framework.