Hughes Syndrome Foundation

Ive been invited to St thomas's but...

popshaw21
Posted by popshaw21
14 Mar 2013
10 comments

Ive recently been invited to be seen at St thomas's and stay for 3 days,which they have said they will put me up in a hotel near by.
I asked them if they could accommodate my carer as I need someone with me at all times because Ive recently been registered blind and I'm still getting the clusters of seizures.
They told me they cannot accommodate my carer and would have to pay for my carer.
I asked if I did go would they be able to help with my sight and seizures which is causing me alot of anxiety.They could'nt give me any gurantees only more tests and scans.Here where i live they don't have answers and they are scratching there heads,so i believe they are passing the buck!.I need some advise about wether i would benefit going up to St Thomas's?I don't won't a wasted journey and pay out for my carer just to be told there is nothing they can do to help me.

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10 comments

MaryF
MaryF Admin
14 Mar 2013
Yes, if I were in your shoes I would go.. I know the expense is daunting.. but it may provide more detailed and safer arrangements for your care locally. Just do what you can with your carer to prepare, writing history and events out in bullet points etc... to maximize what you get out of the appointment.. so that any letters written back locally are of the right quality. Wishing you lots of luck with all of this, keep us posted. Mary F x

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popshaw21
popshaw21
15 Mar 2013
Hi mary,Thank you for your comment and I'am concidering going however I will call ST thomas's and find out exactly what they can offer me in the way of treatment and also mention the importants of having a carer with me and wether the carer can share the room if they have 2 single beds.I will update you about the out come.
Regards
Popshaw21 x

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APsnotFab
APsnotFab Admin
14 Mar 2013
Is your carer male or female? I ask because if you are prepared to share a room its very possible that the room that you will be put up in will accommodate both of you anyway. You need to find out from St T what the accommodation is and if this will be acceptable to you as it may mean it actually wont cost you anything extra anyway.
I can't see how they can expect a disabled person to fend for themselves on their own without their carer in any case. Would they put a person in a wheelchair who needs a carer on their own without a carer? They have a duty of care towards you and you could have Fire and Safety implications being left alone.
Of course you must go - its important so do not allow this issue to dissuade you. Call the admissions officer at St T and tell them you are disabled and they MUST make arrangements for your carer.
Please do keep us posted about the outcome. x

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MaryF
MaryF Admin
14 Mar 2013
Well said! Mary F x

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popshaw21
popshaw21
15 Mar 2013
Hi,my carer is a woman,and i will call ST Thomas's and ask if they could possibly put me up in a room with 2 single beds and mention about the risks of being on my own and the anxietys and concerns i have about being on my own and see what they say about my worries etc.I will update you on the out come x

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InSpain
InSpain
15 Mar 2013
I'm not 100% sure if they can help you but if you or your carer could contact the RNIB then they can advise you on how to claim back costs related to your health. My Mother is partially sighted and can highly recommend this site - www.rnib.org.uk. Good luck with your visist I hope you get some answers that will make your life more comfortable. Love from here InSpain xxx

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popshaw21
popshaw21
15 Mar 2013
Thank you for your comment,and i will look into the possibility of getting some help from the RNIB about help with the costs of this trip to ST Thomas's.Thank you for that.best wishes to you and your mum.
Take care x

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Lure
Lure
15 Mar 2013
Hi Popshaw21,

I really hope someone will help you! It is so important for your health.

Greetings from a cold Stockholm and Good Luck!!

Kerstin

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popshaw21
popshaw21
15 Mar 2013
Hi kerstin,thank you for kind comment I'am still concidering going and will let you know the outcome.stay warm best wishes
Popshaw21

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InSpain
InSpain
15 Mar 2013
Hi popshaw21 my Mum tells me that in the past she has received grants for help from the following site too - www.royalblindsociety.org I don't know if they can help you but it would certainly be worth making an enquiry or two. Good Luck xxx

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