After seeing my respiratory consultant she said the big guns need t come out

[Lisacharman]

She has said she thinks I will have the criteria for mepo my last positive blood test was 16th November 2016 she thinks I meet criteria if I don’t she was saying I would have to wait for the new medication beliza something she couldn’t remember the name just that there was no criteria to meet and I could go straight on to this one but nobody said where I would have to go papworth was mentioned when I was in hospital a month ago but nothing more got said I have real concerns as I live alone I am paralysed and have various other illness and disabilities I have care in my home

I only get 32 hours per week to spread over 7 days per week I have an adapted car which is mine but I do not have the hours for a carer to drive me 120 there and back to papworth so not sure what will happen and because they are all private carers I have had issues with hospital transport allowing them to come with me as I am in electric wheelchair I am very concerned as to how I would get there how long it takes and also I have heard you have to stop treatments before you have mepo I don’t know enough about it like I said it got said at clinic appointment and not much else was said I was not having a great day as appointment was a Sunday and had to post on Facebook for a friend who could drive because no patient transport on weekends so I didn’t want to hold my friends up who came any further now I am worrying about everything and scared about going by myself sorry for long post I am just not great with hospitals full stop as they are the reason I am paralysed so I have panic attacks which is why I take someone with me to all appointments x

[WheezyAnne]

Can the local volunteer centre help at all? Although it is the distance and time again. You have my empathy. I fully understand what you mean about the panic and anxiety and worry about transport. Speak to your GP, social services, PALs, Citizens Advice, anyone who will listen, just to get your concerns out in the open. Then say to yourself, have I done everything I can? Hand the worry to others. Not much help, I know. Thinking of you.

[hypercat54]

Hi to be honest I would stop worrying about it all as I am sure they know your situation. If they decide you must have certain treatment somewhere they should provide you with relevant transport, even an ambulance. You won't be left to struggle alone and you won't be able to anyway. x

[omahjoa]

Hi I am waiting for Mepo to start. There is a criteria. I have met it as I have esinophilic asthma. I do not have to stop meds before stsrting this one. The idea is that if this works I will then start to reduce steroids with the aim of stopping them all together. I hope you get seen soon. I have to travel to Oxford but have been told they can do the injection in reading where I live xx