Does anyone have any advice for me?

[HiveMind]

I have CSS (diagnosed in 2008). I also have, heart failure, asthma and Bronchiectasis (progressive lung damage); all due to the CSS. You can imagine the amount of meds I'm on.

I tried to claim for an exemption card two weeks ago but have just received a letter to say "NO" because I don't have one of the conditions that are on their list. There are ten conditions.

I know this topic has been discussed before on here and people with CSS HAVE obtained an exemption card (type in exemption card into this sites search box to see posts) but I just don't know what else to try next because I'm not giving up!

Surely, if one person with CSS/ Vasculitis gets an exemption card, we ALL should get one?

Any advice?

[SueAshdown]

Hi usually obtained if you're on steroids. Did your Gp or consultant sign the form? Sue

[HiveMind]

Hi Sue,

Yes, I'm on steroids (amongst the rest of the meds) and Yes, my GP signed the form....

[Hidden]

Hi BB, this is a difficult minefield as I too tried to get exemption for 3 years before I reached 60 yrs of age. The thing is that if one is on strong Immuno-depressants then they can be classed as 'chemotherapy'. You need to go onto the site of the BMJ journal and look into drugs that lower your immune-system and somewhere in the classification there is an exemption for the type of drugs we have to take to control our disease (I have WG) I do know of people who have gained exemption because they are on Cell-Cept, which I am on but I gave up the fight and carried on paying a yearly prescription fee (which for me made sense as I am on 14 different drugs) I wish you well in your fight and do ask your Consultant to sign the form because I feel very strongly that our disease is unfairly dealt with in the drugs lottery. Take care S&J.

[HiveMind]

Just been told I don't qualify for exemption.

It IS a very unfair system and I have no idea why Vasculitis sufferers get such a raw deal in this regard, especially as we're on a massive amount of meds. I know a diabetic who takes a couple of tablets a day, nowhere near what I take, who gets an exemption card. ??

I understand that a lot can go wrong with diabetics but the same things can (and ARE) going wrong with Vasculitis patients.

Not sure I want to take this lying down.....

[John_Mills Volunteer]

I am afraid everything to do with Vasculitis is a post code lottery, prescription exemption certificates, exemption from car parking charges in hospital car parks when having Chemotherapy, having access to Rituximab, having access to other drugs too especially for the patient with Behcets, receiving the appropraite and correct treatment from every hospital in the UK, even being diagnosed properly in every hospital in the UK .....the list is endless....people still die, if their condition is not recognised and treated quickly, there are some areas in the UK where you certainly would not want to have Vasculitis.... ..but it is improving..although it does not feel like it sometimes... 40 years ago everyone with Vasculitis would have most certainly died within 2 years of diagnosis...even the consultants and doctors are still learning about Vasculitis...the UK Vasculitis Registry has just started this will actually be a register for all patients with Vasculitis in the UK... this will give an exact number of how many patients there really are with this condition...all hospitals will use it, it will be another step forward for the patient with Vasculitis being treated as other patients with a chronic illness are treated... there is along way to go still but this last year we have come a long way too...the specialists in Vasculitis are now listening to the patient with Vasculitis... at the moment Vasculitis UK are being inundated with requests from the best hospitals in the UK for treating Vasculitis for finacial funding or practical support for research projects for improving the health and life of the patient with Vasculitis.

[HiveMind]

Thanks for the info John. Sounds like you (and others) are doing sterling work to get Vasculitis "out there" in the public consciousness. It can only be positive. Great news about the UK Vasculitis Registry!