Carer/ partner support

It may not be your centre (It's not mine either) but if you trundle along to the Papworth support group he would definitely meet up the partners of other patients.

One of the things that came out of the conference this weekend was lack of support etc for carers of people with PH.

I was diagnosed November 2009, and this was the first time i met other PHers, because i didnt know how the conference would go or what to expect, i made a decision to take a good supportive friend with me instead of my husband. My parents were also away so he had to stay behind in reality to look after our daughter, but speaking to him on my return about the weekend and the subject above that arose, he said then that he wanted to come so he had the opportunity to talk to other partners/ carers of people with PH and to see how they were coping with everything and the best way to get help or support for himself. hindsight is a wonderful thing but unfortunately it doesnt help knowing that i probably made the wrong choice of support to take with me and that the next conference is probably a whole year away before My husband can probably meet other people in his situation!