Patient Support

PNH patients in Scotland have access to an extensive and compassionate support network, alongside a dedicated medical team ready to help in a wide range of situations. From specialist clinical care to practical advice and community connection, you’re never alone. Discover the range of support and resources available to you as a PNH patient.

Your Haematology Team

Your local PNH specialist manages routine monitoring, blood tests, transfusions, and supportive care.
They coordinate with the National PNH Service in Leeds for advice on treatments like complement inhibitors or urgent issues.

Emergency Support

If you experience severe anaemia, symptoms of blood clots, or serious infections, contact your local A&E and your PNH specialist team.
For urgent situations out of hours, use the Leeds on-call number to reach PNH specialists who can advise emergency staff.

Patient Groups and Peer Support

PNH Scotland can provide information, patient meetings, and peer connections.
Talking to other people with PNH can help reduce feelings of isolation and provide practical tips for daily living.

Mental Health and Wellbeing

Living with a rare, unpredictable condition can affect your mental health.
Speak to your GP, haematology team, a counsellor or PNH Scotland if you feel anxious, stressed, or depressed.
Talking to fellow PNH patients can provide reassurance and coping strategies.

Related Topics

Patient Stories

These stories share the real experiences of people affected by PNH in Scotland. Explore their first-hand experiences.

PNH Care in Scotland

PNH care in Scotland is based on a shared-care model. Find out more abut PNH care in Scotland on this page.

Better Living With PNH

An excellent guide provided to PNH Scotland by The Canadian Association of PNH Patients (PNHCA).