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Getting help within the NHS

NAS83776

Hi everyone,

I have been having trouble getting my prescriptions. None of my prescriptions are for my autism (unless you count the anti-depressants, being undiagnosed for so long did partially cause my depression.)

I get very stressed about getting my prescriptions, I am constantly worrying that I am going to run out, that I am not going to be able to get my prescription in time etc. A lot of this is due to being unable to order my prescriptions again too close to when I just got them and having previous experience with delays due to my GP, the pharmacy and due to medication shortages.

I understand why I can't order the same medication within a certain time frame, but this means that I get very stressed. I see I only have a couple weeks left (I get it a month at a time) and panic that it is going to take longer for me to get some more meaning that I will have some days without it.

The last time I had a medication review. I tried to talk to the doctor about this, and tried to explain that I was autistic and this is how I am feeling, and tried to ask for help. But was told that it was my fault and I needed to be more organised. This resulted in me being out of it for days after and having a panic attack and crying for a hour after. Also, this was all on the phone because at my last GP I attempted to ask for an in person appointment due to my autism and was told I could not and was hung up on. So, now I am too scared to try to get an in person appointment.

So, in conclusion that is why I hate the NHS and how they respond to autism.

PLEASE HELP!!

Parents

  • I hear you.  I find this difficult especially as I forget stuff.  I only take Lanzoprole from my hiatus hernia, but even so forget to take it, forget to order it until near the wire, then there are the delays... It used to be so much easier when they did three months at a time.  I then had a month's to remember it in and generally managed.  You can do it by e-mail these days via the POD.  That's easier than making a phone call.

    If I were you, I consider changing GP though.  Obviously no GP can get around the "computer says no" issue for you, but they should not be treating you like that one the phone.  It only shows that they have no understanding of autism.  I had one like that, who told me to get an advocate and when after I had to put in hours and hours work of work finding that (mega strain on my executive function) then refused to make an appointment save by ringing at 8 in the morning....errrr just precisely HOW did they think I could actually use this busy advocate who has clients other than me in the day then?  Defies all logic never mind the lack of understanding of autism.  They had no concept of how hard it is for me to make a call to them at all.

    But they are building a new medical centre outside my house, so I've just changed for logistical reasons.  When I changed I asked what knowledge the staff had about autism.  "None" they said but encouraged me to sign up with them.  They were so sweet.  The health care lady who registered me wanted to know all about the journey I had to diagnosis and what that means for my health care.  She made a longer appointment with one of their doctors who also really wanted to know.  They seem very amenable to reasonable adjustments for me.

    So much depends on attitude and willingness to listen.

Reply

  • I hear you.  I find this difficult especially as I forget stuff.  I only take Lanzoprole from my hiatus hernia, but even so forget to take it, forget to order it until near the wire, then there are the delays... It used to be so much easier when they did three months at a time.  I then had a month's to remember it in and generally managed.  You can do it by e-mail these days via the POD.  That's easier than making a phone call.

    If I were you, I consider changing GP though.  Obviously no GP can get around the "computer says no" issue for you, but they should not be treating you like that one the phone.  It only shows that they have no understanding of autism.  I had one like that, who told me to get an advocate and when after I had to put in hours and hours work of work finding that (mega strain on my executive function) then refused to make an appointment save by ringing at 8 in the morning....errrr just precisely HOW did they think I could actually use this busy advocate who has clients other than me in the day then?  Defies all logic never mind the lack of understanding of autism.  They had no concept of how hard it is for me to make a call to them at all.

    But they are building a new medical centre outside my house, so I've just changed for logistical reasons.  When I changed I asked what knowledge the staff had about autism.  "None" they said but encouraged me to sign up with them.  They were so sweet.  The health care lady who registered me wanted to know all about the journey I had to diagnosis and what that means for my health care.  She made a longer appointment with one of their doctors who also really wanted to know.  They seem very amenable to reasonable adjustments for me.

    So much depends on attitude and willingness to listen.

Children
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