Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Concerned about another member's safety or wellbeing? Find out how to let us know.

NHS

MatildaMatilda Member Posts: 2,616 Disability Gamechanger
I have to be somewhat vague about some details just in case any of the other parties concerned do use this site.

The NHS really is on its knees.

Problem 1

I have rheumatoid arthritis (RA).  I was taking medication that controlled my RA but after a number of years this suppressed my immune system so much that I was getting infections.  The last treatment was given in May 2017, with the next one due Nov 2017.  In Oct 2017 the consultant decided I should be given a different med instead.  This new med was supposed to begin in Nov 2017 but, because of a number delays on the part of the hospital many of them unnecessary, I didn't begin the new med until this month, April 2018, five months after it should have begun, and this med can take several months to take effect.  Meanwhile, the old med ran out early Feb 2018 and since then my RA has been uncontrolled and I have exteme pain and stiffness.

A week ago I contacted the hospital and asked if I could return to the old med.  A junior doctor phoned me back and pointed out that the old med had made me ill.  However, I feel much more ill with uncontrolled RA than I ever did with the infections caused by the old med!  Case of the lesser evil.  The junior doctor told me she would speak to the consultant but I have heard nothing more since and somehow I don't think I'm going to.

I do have a previously-scheduled doctor's appointment at the hospital in May so they'll have to give me an answer one way or the other then but in the meantime I still have uncontrolled RA.

Problem 2

Recently, at my GP surgery I had a medication review with a pharmacist who told me that they would send my next six months set of repeat prescriptions to my usual pharmacy for 20 April when the first of the six is due.  

A few days later I spoke on the phone with a surgery receptionist on another matter.  The receptionist told me the system showed I was due for a med review in May.  Cut a long story short, I wrote to the practice manager and explained that I had already had my latest med review and asked them to confirm that the next repeat meds would indeed be sent to the pharmacy by the due date.  The letter was posted 1st class on Monday of this week so should have been received Tuesday.  Unfortunately, the letter was not sent recorded delivery. So far, I have heard nothing from the practice manager.  

If the prescription is not at the pharmacy tomorrow of course I shall make a complaint to the surgery.


Replies

  • atlas46atlas46 Member Posts: 827 Pioneering
    Hi Matilda

    Sorry to hear about the runaround.

    It's time to become an Empowered Patient.

     Phone your Consultant secretary about your problems with meds and explain that you consider this an urgent matter.

    Ask for a call to you from said Consultant.

    Contact surgery and request a call from one of the partners, after they have finished their lists.  Again explain you consider this an urgent matter.

    You are on the way to becoming an Expert Patient.


  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    edited April 2018
    @atlas46

    Thank you for your prompt reply.

    However, the consultant already is aware of my problems and is ignoring me.  My only course of action would be to make a complaint.  I don't think I have enough evidence.  For example, the hospital could make excuses for the delays.  And they could also say I can't go back on the old med because of infection risk - but if this is what the consultant has decided then she could just say so instead of ignoring me.

    This consultant has a history of ignoring problems she finds difficult rather than dealing with them!

    I shall phone surgery tomorrow and if prescription has not been sent then I'll ask to speak to practice manager.  If this is refused, then I'll write a letter of complaint to one of the partners.  This is a clear cut case for complaint.

    UPDATE:

    Heard from hospital.  Nothing about meds themselves, but told I can have another steroid injection.  That's something, I suppose.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Update

    Emailed surgery earlier and got no response so phoned them just now.  Told prescription is pending with doctor so with luck it should be sent to pharmacy tomorrow when it's undoubtedly due.  I'll phone surgery in the morning.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Thank you for posting, @Victoriad.

    The NHS is absolutely barking.

    At the hospital where I attend two outpatient depts. supposedly a 'top' teaching hospital, if a nurse who leads their own clinic is away on holiday or sick, then the clinic is cancelled because there are no other nurses to cover.  

    As a warning, after my experience, people might want to think twice before reporting to a hospital any side effects from a med that is working as there might be a very long gap between stopping one med and starting another.

    I wish now I'd kept my mouth shut about the side effects and stayed on the old med.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    i'm pleased you are doing well, Victoria.

    I don't think the hospital will allow me to go back on the old med even though I wouldn't mind risking the infections.  They'd rather have me suffer with uncontrolled RA to cover themselves in case I get infections.

    Surgery has left one of my long-term meds off my repeat prescription which I assume is an oversight as hospital hasn't told me to stop taking it.  I'll have to try to get through to get a telephone consultation.  Can't face doing so at the mo.  Luckily, I've got some extra tablets and this med hasn't been much use for years, anyway.  Probably some new locum gp just qualified did the prescription.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • charlenecharlene Member Posts: 555 Pioneering
    Well done Victoriad.  I to find gardening lifts my mood.  I have quiet a large tree in my front garden.  The birds nest in it, first comes the Doves, then Pidgeons and lastly Sparrows.  Can't see the nest but sitting on a bench I can hear the chicks chirping:).     :smiley:
    When the going gets tough, the tough get going.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Thank you of the info, @Victoriad.  I have been on numerous meds for RA over the past 30 years, all of which stopped working after a few years so had to be changed.  I understand that the med I was on that caused the infections is one of the latest treatments.  Don't know about the med I've just started but I attend a teaching hospital and teaching hospitals tend to use the latest treatments.  But, as you say, there are also experimental treatments.

    As you say, I've hit a brick wall at present and think I'm going to keep hitting it until my next hospital appointment in early May when I'll ask if there are any other possible treatments that might work faster than the current one they've put me on.  And also ask if I can go back on the previous med because I'm prepared to risk the infections.  And I'll ask if I can have another steroid in a fortnight's time when I go for the next infusion.

    Apparently, the NHS's philosophy now is 'patients first' :D .  Hell will freeze over before the NHS puts patients first.  NHS hospitals, and GP surgeries, are run for the benefit of those who work in them, not those they are supposed to serve.

  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
    The user and all related content has been deleted.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Thank you, @Victoriad

    Take care yourself.
Sign in or join us to comment.