What to expect??

Hi, may ramble on a bit but please bear with me. my mum was diagnosed with wegeners vasculitis in November 2013 following a spell of what the doctors thought was flu?! she then had a mild heart attack caused by the vasculitis and was in hospital until a week before xmas. she has had two infusions of cyclophosphamide and has her third on Tuesday. we know that the condition is rare but we know so little of what to expect or what help my mum is entitled to. can anyone suggest anything or provide advice just to provide some sort of clarity, please?? my mum was discharged from hospital without carers and I have been doing as much as I can until last week when I insisted that someone from the docs should be helping, especially as my mum cannot walk unaided, undress, shower etc. they have sent the reablement team to help and assess but no one seems to have a clue what to say or do. carers haven't heard of it and her consultant may as well be a ghost. my mum has been signed off work and so we are struggling to pay her bills with sick pay and the cost of prescriptions is ridiculous given the number of pills she has to take!! it is so frustrating!!

sorry for my rant but I thought this may be the forum to do so and maybe get a little insight into the condition...

7 Replies

oldestnewest
  • Hello there, so sorry to hear about your mum. Just a quick piece of practical advice-if your mum isn't eligible for free prescriptions (vasculitis doesn't automatically qualify), get a prepaid certificate which works out at £10.40 a month, definitely worthwhile! I have wegeners too and have also managed to get a blue badge and DLA (disabled living allowance), albeit with a very supportive GP. Good luck & I hope your mum starts to feel better soon. x

  • If your mum needs that level of help you should qualify for what was disability living allowance - ask Citizens Advice for info and help. They usually have someone who will help fill in the forms. But as traxter says - get a pre-payment certificate for prescriptionsasap - I'm disgusted the pharmacy or your GP didn't mention it. If you have the receipts you may be able to backdate the beginning of the certificate to cover them - an independent pharmacy is often better for that sort of advice than somewhere like Boots or a supermarket pharmacy.

  • The hospital ot should have checked to see if your mum could look after herself prior to discharge! My mum was discharged with full support four times a day by carers paid for by social services. Start making calls and claim for carers allowance yourself on top of dla for mum. You need help so ask for it, many times if need be.

    Many on here have great experience with such things so please ask if you need to.

  • first of all, take a breath, you will be working at 100mph just to cope with this change. A few things to bullet point.

    1 My father got help to stay in his own home, straight from hospital...so speak to the hospital social worker or outside social worker. You must get help

    2 seek a good consultant who has experience of wg vasculitus..my father meets with his consultant every 2 weeks..at first it was every week, bloods taken and medication changed accordingly. My fathers GP does not know anything about WG VAsculitus...so really no use

    3 WG Vasc affects different people differently, and it depends at what stage the disease/virus was caught. Your mother needs to know that she is not alone, and that there are people out there who survive and even go back to work.

    4 if you can get your mum to walk a little around the house, keep doing some things around the house to keep her confidence up this is extremely important to your mother getting better and looking towards a future.

    5 use this forum and others to gain more info, but remember to keep it in perspective to your mothers illness

    6. people on here will be able to give you advice as to the best Consultants near you.. I live in Scotland.

    My fathers illness was caught very late on, it was very serious, he came out of hospital at the end of July..he is still recuperating and learning to deal with the illness, ... All the best to you and your family the first 3 months are the most difficult, but you will all get through this big change x

  • I suggest that you have a look at this excellent document called "Route Map" which explains all aspects of vasculitis in general, and each of the many types in detail, including WG.

    vasculitis.org.uk/about/rou...

    Also this link from the specialist vasculitis US hospital Johns Hopkins is a nice clear explaination ..

    hopkinsvasculitis.org/types...

    I have Churg Strauss Syndrome since last April and really only just started this long journey but slowly progressing.

  • Sorry to hear about your mum it's a long hard struggle to get this condition in remission or a manageable state but you need to try and get your mums consultant changed if he's not giving you all the info u need as he's the first port of call and the one you look to for help and info the outher thing you could do is go to cite resins advice burea to see if there is any advice they can give you to see if she is entitled to any benifits help don't knowe what drugs she is on but worth checking to see if any qualify for free prescriptions if not may be better for you to do the pre paid prescription charge you pay so much a month at least it might work out a bit cheaper hope this has been some help

  • Hi There, sorry to hear about the impact on our mum and also you. Re prescription payment exemption, the form lists several conditions covered, as you said vasculitis is not included on the list, but there is a box at the bottom of the list marked OTHER. We had a long talk with our GP and he agreed to sign off the application for exemption as vasculitis is a chronic disease, just like the other approved conditions on the list. The application was approved. My daughter now has an exemption from payment of prescriptions, I would suggest that you get the form from your surgery, complete it as much as you can and persuade your GP to sign it and post off the application. Best wishes.

You may also like...