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

[popshaw21]

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.

[MaryF Administrator]

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

[popshaw21 in reply to MaryF]

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

[MaryF Administrator]

Well said! Mary F x

[InSpain]

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 - 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

[popshaw21 in reply to InSpain]

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

[Hidden]

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

[popshaw21 in reply to Hidden]

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

Popshaw21

[popshaw21]

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

[InSpain]

Hi popshaw21 my Mum tells me that in the past she has received grants for help from the following site too - 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