Pain Management - Bath/Stanmore/RNHRD

[loosebones]

you can claim travel costs if you are in receipt of Income support. Their finance department is really out of the way so if you can't do it on the day then maybe do it by post

[juliepops]

just wanted to share my news that I had confirmation just before Christmas that I definately have a place on the 3wk rehab prog at Stanmore. It will probs be April before I go in but already feeling more positive about things.


Julie

[Englishgremlin1]

That's great news Julie. I have filled in some of the forms for the pre assessment stage of things and am waiting to hear more now.

[Rosie]

Hi all

I have been referred to Stanmore by Dr Kaz-Kaz at UCLH to be considered for the rehab program at Stanmore and I have my first appointment there ina few weeks. Can anyone explain the process of appointments and assessments, and their experience of timescales?

Thanks

Rosie

[sheppeyescapee]

This is what I experienced and timescales -

First Appointment - Assessment for suitability for the rehab programme with Dr Cohen (May 2011)
Second Appointment - Talk about the programme, assessment of needs with member of the team (Sept 2011)
Letter to make date for stay, was offered end of October 2011 but wasn't able to take due to short notice so am going in Feb instead.

The people there were very thorough in their assessments and I feel confident that going there is the right thing for me. Was told that it I will be in either 2 or 3 weeks depending on the progress that is made during my stay. They have a follow up process after the stay so they keep track of you. They seem a lot better than anything that can be found locally which is why I'm travelling across the country to go there.

[trekster]

Thanks for sharing your experience Jack. Wondering if I should apply for stanmore, is it dependent on your DLA level?
Can a physio refer you?

[Rosie]

Hi all

trekster, I was referred to UCLH by my local rhuemy consultant as he said that was the route to get a referralto Stanmore. It was the only reason that I was seen at UCLH this time round, I already had a diagnosis and the referral letter made it clear that he was asking me to be referred on to Stanmore to be considered for rehab. My rhuemy said he was unable to refer me to Stanmore himself. Not sure what other people's experience has been.
Thanks sheppey for your information, that was quicker than i had thought.

Rosie

[trekster]

Cheers rosie got to make a rhemy appointment soon but hes planning on discharging me so im dreading it both because of the wheelchair and the stanmore rehab referral.

[ciderpig122]

I've got my 1st stanmore appointment tommorow! I hope it's not. 10 month wait until we get to go in

[sheppeyescapee]

can be a lot shorter than that if you are in a position to be able to go at short notice or take a cancellation place. because of uni i couldnt do so as i wouldnt have had time to arrange transport, and arrangements with uni.

[ciderpig122]

Fingers crossed!

[trekster]

Sending good vibes and wishes to anyone waiting for help from these rehab programs.

[ciderpig122]

Thank you xxx

Bit scared after reading back on this thread........people actually get declined because of cost to their PCT? Ours is Peterborough who are failing hugely and my GP surgery are tighter than a budgies a*** ole! I've only just been allowed to try pregablin after 11 years of pain and had to cause warfare to be allowed the seretide inhaler from the nurse

Feeling very down now, more than I was before

[trekster]

hugs ciderpig

[star gazer]

Hi trekster, I have not been to Stanmore yet or activated my referral, when I saw Prof Grahame the rheumy at UCLH he said at the appt. and in my folow up letter that I need to attend Stanmore once my pots is under control. However from when I saw him in March and up until my last appt. at the pots clinic they say not controlled enough to attend Stanmore, I am hoping that once things settle down I will be able to activate my referral. In the mean time i will continue with my physio reps and hope the new splints will help with the subluxes, am seeing a lovely ortho team at local hospital who seem very aware of hms/eds so will continue with them until ready for the three week stay. I don't know if this is possible but would you be able to see someone at UCLH rheumy team then see if they can refer you, would your g.p refer you to UCLH?
all the best
star gazer

ciderpig, hope all goes well with your visit to stanmore.