Hi all I’m sorry if this is in wrong section I received last week a text message to contact my doctors I called and was told that the queen elizabeth hospital in Glasgow wanted to speak to me regarding the new clot busting drug I was given after my stroke in March I called the lady back today and to say the conversation was strange is an under statement the entire conversation was about my mobility ability and my ability to make a meal and how I was getting on in the shower and the toilet when I came off the phone I just thought was that a pip assessment any advice on what I could do I’m a little worried I have physio to morrow and was going to ask her if she has had a request for information I did think about calling back and asking to speak to the drug trial supervisor as I could not see what any of her questions had to do with the clot busting drug any advice greatfully received if you think I’m being paranoid just say you won’t hurt my feelings
Hi @Briansmith1962 that does indeed sound as if someone had contacted them about you with regards to a PIP assessment and they didn’t have the answers, so asked you how you were getting on. That said I’ve never made a PIP claim so I don’t know if PIP assessors call your medical advisors for info about your claim.
On the other hand they may have just wanted to see if you’ve made progress for their own records.
There’s no harm in you calling back to ask why they were asking those sort of questions.
I have never met them
Do they not have to tell you they are gathering information
When you say you’ve been given a new clot busting drug, is it a trial you’re taking part in for the new drug, as they may just want information to see how you’re progressing.
Yes a trial I had to sign consent forms at thenhospital
If it’s a trial, they usually contact you regularly to assess how you’re doing over the period of the trial, it could be every couple of months they contact you, the frequency of contact is usually mentioned in the paperwork you signed, if you can’t recall, given you were in hospital at the time, call them back tomorrow and ask how regularly you’ll be contacted.
Trials can continue for months or years in some cases.
I was asked to take part in a drug trial when I had the stroke and it was to last a couple of years, with 3 monthly reviews.
I understand yes it was the questions I thought were a bit strange can I make a meal or go to the toilet on my own I just couldn’t reconcile what the connection was with a clot busting drug
@Briansmith1962 it sounds very much like my ESA claim phone call. Are you calling the hospital to find out? Good luck best wishes Loraine
I haven’t called them yet I thought if they refuse me there conduct may be useful in any appeal
Good thinking good luck @Briansmith1962
@Briansmith1962 I don’t know but wonder if they are just trying to find out how successful the clot busting drug has been. Has it given you your abilities back quicker than you might otherwise have done if you hadn’t had the drug?
It does sound like it fits into PIP questions but when I had my PIP assessment this morning they asked me at the start if I knew the purpose of the call. You would also have prior notification of a PIP assessment call.
If you’re concerned I would call them back & ask them some questions to confirm what it was all about.
Hi Brian, the trial reviewers were probably just gathering info on how you are progressing in general terms with your rehabilitation. If you think the questions were too invasive, you should give them a call to check, worrying and high stress is not good for us SS.
If you started the trial drug in March, this will be your first quarterly review as 3 months have passed. In a trial they will want info on all aspects of your progress, as well as how you are tolerating the drug.
If you haven’t made a PIP claim, I would imagine this was what the call was all about, that said they should have made sure you knew who was calling.
Give them a call back as it’ll put your mind at rest.