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Does the UK know what this problem really is

Posted , 5 users are following.

michael1960
michael1960

Since Feb 2000, when it was finally found that i have Haemochromatosis,my life is a constant battle with the UK benifits system. Back in November i had to go to a medical Assessment to prove that i am unable to work. Having recently got the results of this Assessment,it appears that they dont really know what it is,and what it can do to people. The side effects are a daily thing,and we have to push on and manage it, but its impossible to do any work. This is now the third time its happened to me,and each one has ended up at a Tribunal to sort this out. It is a battle with this poxy Goverment, who spend money out to all in sundrie,yet dont look after those in the UK,who have health problems.

Is there anyone else in the UK going thru this,and what was the result,any advice you took from it would be very helpful.

1 like, 7 replies

7 Replies

  • deidre74971
    deidre74971 michael1960

    Posted

    Hi Michael how bad are you feeling fo you not to be able to work and how often are you going for venosections and what is your ferritin readings as you sound quite ill .
    • michael1960
      michael1960 deidre74971

      Posted

      Hi Deidre.  Every day i feel tired,constantly aching and painfull/Swollen joints. Making even opening a plastic milk top difficult. Have been like this since Feb 2000,even my ex employer deemed me ''Unfit'' to work.  Ferritin is now 209. Was 3500 when first discovered. Will be starting more Venosections in Jan. Every three months i have to have this done.

    • sheryl37154
      sheryl37154 michael1960

      Posted

      Hi Michael - I can only give you an Australian perspective on this.  I had to give up work too - just getting dressed to go to work was a major feat which required a rest during and afterwards.  I eventually applied for a disability pension and was successful.  I included a letter describing my problems as the forms are totally inadequate.  Your dr must tick the right boxes too, especially notifying that the length of time this illness will affect you is more than 2 years.   It probably helped that one of my assessor's cousin had haemochromatosis too.

      It is not your current ferritin that is the problem, it is the irreparible damage done during the years of non diagnosis and non treatment.  See if you can find some medical research studies that support your issues and attach them also.

      Haemochromatosis alone is not a problem - it is the complications arising from late diagnosis and treatment.  Put the focus on your arthritis and other complications rather than having haemochromatosis - get a supporting letter from your specialist, i.e. every dr you see regarding your issues.

      Talk to the UK haemochromatosis society to see what advice and supporting information they can supply.  These organisations are our advocates.

      Good luck.

       

    • deidre74971
      deidre74971 sheryl37154

      Posted

      i agree with Sheryl focus on the arthritis have you had any scans or anything for your pains for they are the main issue are you taking medication for your pain if you have that could be your fight to get some financial help.

       

    • michael1960
      michael1960 deidre74971

      Posted

      Trust me Deidre, i've had more Scans and Tests than you can shake a stick at,even a Brain Scan. And to add more words as to what Sheryl has said, it did take 2.5 yrs to finally get the answers,by which time,a fair bit of damage had be done. They did say the liver was scarred a fair bit.

  • Brummiegirl70
    Brummiegirl70 michael1960

    Posted

    Hi ,

    I'm waiting for my assessment ,

    Beings it's 5 wks late already ,

    I phoned them up to see what was happening

    Having doing so I informed them that I now have a date for my venesection for haemochromatosis

    They hadn't heard of it or even understand what it does

    So I spent half hour on the phone explaining

    Though I did find it odd that I was at A&E the other night

    ( As falling down the stairs through the severe cramp I get in my legs )

    The Dr asked me if had any illnesses

    To my surprise even he hadn't heard of it

    I think the only ones who do are the researchers , our consultants & us the patients & family

    It should be made more aware ,

    Mainly due to the symptoms that are being put down to other medical conditions

    • michael1960
      michael1960 Brummiegirl70

      Posted

      Hi Brummiegirl70.  Glad to hear your in the same boat as me,  (on a good note of course).  How right you are, nobody really does know what it is,and having had my Assessment, they Failed me, with only 6 points out of 15 required.   I don't get Cramps, but my legs do ache everyday.

      Yes, your right, only a few of the medical proffesson, family and us do know what it really is all about.

      The side effects of it are also something that no one really understands either.

      I now have to go to a Tribunial for the third time so hopefully they will understand and the DWP will leave me alone again.

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