I currently receive Tysabri from Charing Cross on a monthly basis. Up until now I have been eligible for hospital transport, however due to cutbacks, I no longer am.
I have been told that as I own a car I should get a friend or relative to drive me. Problem is, all my friends are either at work or disabled themselves. Relatives are too far away. The PALS people have told me that as I can’t get public transport (tried that one and the effort put me in hospital overnight due to haemorraging kidneys/bladder) and I can’t get someone to drive me, then I should get a taxi. Having phoned around, the cheapest quote I can get is £150 there and back.
Public transport involves a taxi to the station, a one hour train journey, two tubes (with a change of line) and then another taxi to finally get to Charing Cross. It’s then two hours in the infusion room followed by the return journey, as before.
I really can’t afford this on a monthly basis as my husband has had to take a 50% pay cut to work as a contractor, as he couldn’t find work for 18 months before that.
I get benefits but the mobility element goes on my car and the care on help in the house. Things aren’t helped by having two teenagers in the house; one at uni and the other in further education.
I am just (hopefully) overcoming pyelonephritis - again. Additionally, I have other health issues, but Charing Cross just won’t back down.
What the hell can I do? I am beside myself with worry as I know that the Tysabri works for me.
I know and accept there have to be cutbacks, but it just seems so unfair and shortsighted to stop my transport.
Sorry if this all sounds like gabble, but my brain is in a state of turmoil, and I’m feeling tearful.
You could also try your local branch volunteer support workers. They could do the spade work phoning round for a solution - maybe help with transport themselves There must be a “fix” for this problem. This is the sort of thing they help out with if they can. R
Guys just a suggestion but if all else fails…there are a few of you on here talk about using Tysabri at Charring Cross…could you advertise on herer and twin with someone and take it in turns to take each other? Obviously your infusions would need to be on different dates.
At least it would only cost the fuel then…£150 cab is hellish.
That’s a brilliant idea too! Gosh, I am so relieved to have had some possible ideas on approaching this situation as having gone into a complete state of panic, I am finding it very difficult to think ‘outside the box’.
I think also the concurrance of other posts that the taxi fare of £150 is hellish, especially on a monthly basis when our current finances are very tight. As you say, at least it would only be the cost of the fuel then. However, I don’t drive more than a 15 mile radius of where I live due to severe fatigue and chronic pain issues. I nearly came unstruck when I visited my sister in law (who’s expecting twins anyday! ) on my maximum radius and started to experience severe pain. It took quite a long time until I felt well enough to drive home.
I have seen my gp today who is going to write a letter to PALS. I don’t know if this will have any effect, but it’s worth a try - fingers (and anything else that’s physically possible!) crossed.
) on my maximum radius and started to experience severe pain. It took quite a long time until I felt well enough to drive home. 