Pain Management - Bath/Stanmore/RNHRD

[sheppeyescapee]

That's great news!

[Ruth 1981]

Hi fellow bendies!!

I'm going to the rehab programme at stanmore on the 11th June 2012 for 3 weeks, which is taking place at the Mercure hotel in watford. Just wondered if anyone else is going to be there at the same time as me?

Has anyone done the rehab programme & if so what shall I expect? I'm a bit nervous about my CFS & fibro kicking off along with my EDS as they said they send you home if you can't cope & I'd rather just get the 3 weeks over & done with as I have to have family look after my guinea pigs.

Many thanks.

Ruth xx

[sheppeyescapee]

Hi there, glad you managed to get on the course. There is a long standing thread about Stanmore here - viewtopic.php?f=11&t=3051&hilit=stanmore

I went on the course earlier this year and blogged about my experiences -
Week 1 - http://sheppeyescapee-thisisme.blogspot ... eek-1.html
Week 2 - http://sheppeyescapee-thisisme.blogspot ... eek-2.html
Week 3 - http://sheppeyescapee-thisisme.blogspot ... eek-3.html

Hope this is helpful

[Blaadyblah]

Good Luck! If you read this topic you'll see other peoples' experiences as they've added them.

I know I've heard many good things about Stanmore on and offline.

[Ames]

Hi everyone,

I just had my appointment with Dr Cohen today and she's referred me for the hotel based programme, which I'm so pleased about because the bit I was really worried about was trying to get decent sleep on a noisy ward! Has anyone actually been on this programme yet? I know it's pretty new so maybe not. For those have you that have now got your dates, how long ago were you put on the list? Dr Cohen said that the normal waiting list was about 8 months but the hotel programme is so new that she thought it would be much shorter than that.

Amy x

[sheppeyescapee]

I have posted a follow up blog post about how I have been doing since I left stanmore - http://sheppeyescapee-thisisme.blogspot ... -post.html

[Ames]

Thanks Jack, your posts have really helped calm my fears about the programme! Considering that you haven't been able to implement as many of the things you learnt at Stanmore into action do you still feel that your visit was worthwhile? I'm worried that it's all well and good being told these things but actually doing them is a whole different thing!

Amy x

[sheppeyescapee]

Some days are better than others, I am a lot better off than I was before the course. It just takes time to make changes, it isn't an overnight thing, I've made a lot of changes in the last few months and I'm sure it will take even more time to perfect things. The fact that I am seeing some improvement proves to me that it was worth all the sacrifices it took to go on the course. Of course I will still have bad days and good days but the bad days aren't as bad as they used to be The only thing that I now need to get under control is the pots and that is something that I am awaiting input for.

[Ames]

Ok thanks, hopefully my date will come through soon!

[loosebones]

Will anyone be there next Friday June 1st? I have an appointment just after lunch but aim to get there so we can eat lunch and not have to rush.

[sheppeyescapee]

Nope next time I'm over that way is the 8th June. Good luck with the appointment mate

[Rosie]

Hi all

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.

Rosie

[Ames]

That sounds fantastic Rosie - I was wondering about the disabled rooms! Hopefully the food will be a bit better than in the hospital too! I got my pre-admission questionnaire through today so maybe we'll be in the same 'cohort'!

Amy x

[Englishgremlin1]

Great to hear that the ward is back and the hotels - hopefully that means less delay in me getting in.Have they made big improvemtns with the ward Rosie or is it just a new look with same out rooms and facilities?

[adele]

Anyone going to be at stanmore during the 3 weeks commencing 2nd july? If so i will be there! would be lovely to know of other bendies being there at the same time!

I am very nervous about it all, but i know that this is something that i have to do. I have been waiting to get on a course of some sort since i was 16. I am now 26 so its about time!

Not sure how i will cope, esp with the chronic fatigue side of things. Any tips?

take care!
Adele xXx <><