I went for my assessment for the Stanmore rehab course on Friday, so i can update you about the situation there now. The ward is open again, now renamed the Jubilee rehabitation centre. The hotel based program is being used for anyone who can cope with the set up, but they can still consider admitting you to the ward if you can't cope with the hotel. The course is run at the hotel as well, they use a number of rooms there and have some basic equipment there, but also uses the sports facilities at the hospital, with transport from hotel to hospital available. They have some basic care equipment, like bed levers and bath boards, available at the hotel, or you can bring your own, and there are a few disabled/accessible rooms available at the hotel.
They pay for room and all meals for you for Monday to Thursday nights, but if you want to stay extra nights, or have someone share the room with you, you have to pay for that yourself, although they have a negotiaited rate.
It is all faily new at the moment so some things may change a bit, but one thing that was mentioned is that they are bringing people in in cohorts, based on their condition, so if I am offered aplace it should be with other people who have HMS, so it looks like we have at last got a pain management/ rehab course for bendies!
I did ask whether I would be able to access other hospital departments, like for new ankel splints, and they said that shoudl be posiibloe as well, although they are still sorting out with the other departments how this will work. They also talked about the OTs providing equipment for home, or liasing with your local services to provide it. So hoping I get on this course now, it would provide so much that I need, especially as I should be moving soon.
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!