Multiple Sclerosis News Today Forums Forums Living With MS I have MS and I’m Lucky

  • Jacqueline

    Member
    May 22, 2018 at 1:51 pm

    No it hasn’t been the same for me…Unknowingly when I recently moved from our old address, I was leaving behind better MS care than I have here…Even when I went to see my new MS Consultant ( who like previous Consultant was to see me once annually ) this one didn’t want to see me again…his excuse, because I had PP-MS…I have had bad treatment from the MS team from day one, ( appointment made yet not turning up – appointment booked but when we got there, someone had cancelled the appointment, I never got to see my MS Specialist Nurse.) Basically I am left to deal with this by myself…This of course is our NHS ( National Health Service ) I am not a private paying patient….I am a tough cookie, or so I keep telling myself…and this has just made me tougher..In my opinion, I have to look after myself as no one else will…

  • ed-tobias

    Member
    May 22, 2018 at 3:25 pm

    I’m sorry to hear that, Jacqueline. That’s why I consider myself lucky.

  • Jacqueline

    Member
    May 22, 2018 at 5:17 pm

    Ed, lucky or blessed?

    ..not sure it is all down to luck…

     

  • Cassie

    Member
    May 23, 2018 at 6:03 pm

    I moved from England to the U.S. (my husband is English, I am American) and within a month, had optic neuritis and was diagnosed with MS within a few months.  I feel very fortunate as I know of others in the U.K. who have had to wait forever for the first MRI and treatment was limited based on a timed 25 foot walk. At least that’s how it was back in early 2000s.  I’ve always had decent insurance although the logistics can be a nightmare at times and I’ve had mostly excellent healthcare providers.

    • ed-tobias

      Member
      May 23, 2018 at 10:04 pm

      Hi Cassie,

      I’m glad your MS treatment experience has been good. There are pluses and minuses to both the UK and the US healthcare systems. In the UK you don’t have to worry about paying for it but you may have to wait longer than you should. In the US, as you know, you can usually get the treatment you want/need but not everyone can afford it, or has the insurance to cover it. I’m grateful that my treatment was covered.

      Ed

  • Jacqueline

    Member
    May 24, 2018 at 1:50 am

    I think there are misconceptions that many think here in UK our NHS treatments are free..in a term they do seem that way but, all through our working lives we pay into the NHS…money is taken from our wage packets…

    After my two very close together MRI scans, I was made to wait five weeks to be told the outcome of…” sorry to have to tell you but, you have Primary Progressive Multiple Sclerosis..” five long weeks, totally unbelievable in this day and age…This was mainly to do with the consultant I was under not actually working in the hospital I saw him but, he was based in a London hospital and only visited my local hospital once a week on a Saturday only…I had to keep chasing up my MRI results…and that just meant more stress for me…

    Yes seems every year, usually after a Christmas period, they tell us our NHS is in crisis…

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