Catatonia: getting the right help
Some families come to us after a big change: someone with PMS has lost skills, slowed down, or their behaviour has changed. If catatonia is being talked about, you are not on your own, and there are experts who can help.
If you are worried right now
If you are worried about someone's health or safety, contact your GP or call NHS 111. In an emergency, call 999.
Good information about catatonia in PMS already exists, written by people who know it well. Rather than repeat it, this page points you to the right places.
1. The ECHO group
The ECHO group is where we refer families who are dealing with catatonia. It connects families and the professionals supporting them with people who have experience of catatonia in PMS, around the world.
To be put in touch with the ECHO group, email alisonturner@pmsf.org.uk.
2. PMSF, our global partner
The Phelan-McDermid Syndrome Foundation (PMSF) is the international organisation for everyone affected by PMS. Its website is where we send families for more information.
Go to the PMSF website (external website)
3. Talk to families who understand
Many families in our community have been through this. Talking to them can help.
- Contact your regional rep
- Ask in our closed Facebook family support group (external website)
- Email us at info@pmsf.org.uk
4. Your doctors
Keep your GP, paediatrician or consultant involved. More UK doctors are now working with international experts in PMS. If your doctors are unsure where to turn, tell us, and we will help you find the right people to put them in touch with.