I need your support to create a policy change within my local hospital health board.

 

I have a rare autoimmune disorder where my immune system attacks my body's blood vessels. The condition name is Vasculitis and does not have a cure, but is in my case completely treatable with commonly available drugs, but only when administered in the correct proportions, with the correct timings and in combination with drugs to complement the treatment. This part of the treatment must be undertaken in a specialist Vasculitis clinic, by consultants who have experience of successfully treating the condition.

My local health board does not run a specialist Vasculitis Clinic, so in order to be treated in one of these clinics, I need what is called an Out Of Area Referral. The current policy on Out of Area Referrals by my local health board (NHS Forth Valley) leaves individuals like me with no safe and effective treatment, and no way to access specialist Vasculitis Clinics.

This condition is not curable and is a lifelong in duration however, in many cases it is completely treatable under the treatment procedures used in specialist vasculitis clinics. If the condition is not treated appropriately, the blood vessels become inflamed to the point that oxygenated blood can no longer be supplied to certain areas and these areas start to die off. For me, this is currently progressing in my sensory nerves.

With the current policy, GPs are not allowed to refer patients to specialist clinics that are outside NHS Forth Valley, and only a consultant within NHS Forth Valley can do this. Unfortunately the only consultants that I have been referred to, are not willing (this time) to release me and hand my care over to one of these specialist clinics.

The treatment for this condition has nasty side effects and kills off some of your immune system. This makes you very susceptible to any infections that may be going around, so while being treated you have to self isolate ("lockdown") until the medication's effectiveness has worn off. The treatment is effective for about 6 months and is repeated every six months until your condition is considered stable and in remission. At this point you are in drug free remission and can go about an almost normal life. 

If the treatments are not provided in the correct combinations, doses and correct timings, the effectiveness is poor and you may end up in a continuous partial treatment and continuous self isolation state indefinitely.

Please join with me in asking NHS Forth Valley to add a caveat to their policy to allow patients like me, who end up in an effective "no man's land", to have the ability for their GP to refer the patient to an out of area specialist clinic, without the need for a consultant's additional input.

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I am not looking for donations, so no donations need to be added.

I only need you to put your name and email forward to show your support for my cause. 

Thanks

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