Today I went for an appointment with the dermatologist, first appointment that I have had in over 5 years...
15 years ago when I first developed Alopecia I went to the doctors and tried every cream they suggested to help my hair re-grow, but after nothing worked I decided to concentrate on looking the best I could with wigs and make up. I gave up with the doctors as I felt they could do nothing for me.
With 1 in every 100 people developing Alopecia at some stage in their life, I wanted to go through the experience again so that I know what others are experiencing when going to their GP or Dermatologist. That way I can still understand the upset, frustrations and awkward situations we all have to go through.
I had my 1st appointment with my GP mid September. We talked about my Alopecia and she thought it was best that I was referred to a Dermatologist. 2 months later I got my appointment.... Today!
It was a stressful start... I got there nice and early and could I find a parking space!? No. Illegally parked I ran into my appointment. Take a tip from me and turn up mega early for an appointment and have plenty of change on for your pay and display. Seems a bit silly to mention this but it added stress to an already difficult situation.
I got called into my appointment and sat and discussed my Alopecia with the dermatologist about how I had no hair all over my body... No eyelashes, eyebrows, arms legs... Yes all over my body do we really need to go on!? I always find that part rather humiliating.
Next part was for me to discuss what I wanted him to do for me. I explained that I was not really interested in any treatments as I had tried everything unless there was some new cure? He said there was nothing new but he thought that in the next 5 years time there might be something new to try. I wont hold my breath!
I told him my visit today was because I wanted to know what I was entitled to in the wig department? I also wanted to know if I could have a repeat wig prescription so that I would not have to keep coming back to the hospital every year. After 15 years of having Alopecia i did not see it growing back anytime soon.
As my Alopecia is very severe, Alopecia Universalis, he told me he could offer me 2 wigs a year and that the Orthotics department would arrange this for me. This is the department that arrange for you to get your wig and will provide you with information on where to go and what you are entitled to etc.
I explained to him that as I had long term hair loss I needed real hair as this lasts much longer. I also explained that as my head was very small off the peg wigs did not fit me and that in the past i had paid to have made to measure wigs. He added this to my prescription but said he was not sure if I could have this but would put it on the prescription anyway to help.
As for the repeat prescription he explained that this was not possible... This is a policy across the board. If doctors gave a repeat prescriptions to everyone then some "not so nice people" would take advantage of this and sell the on drugs for example if they did not need them anymore. This has happened in the past, so for this reason patients need to come back every year to collect the prescription.
What he did do for me was book me an appointment for the following year so that I did not need to go through the whole ordeal of going to see my GP first to get referred again.
Then I was sent to the Orthotic department to find out where I was to get my 2 wigs from and how much the prescription charge would be. I was told that I needed to contact one of 3 wig companies and provided a list and the prescription charge would be £60 for one wig so £120 for both... the man only mentioned synthetic hair and not real hair. I was worried that now meant I was not entitled to real hair....
I was pleased to see that one of the wig companies on the list was one that I knew. I took all the details from the Orthotics Department and rang the wig company straight away. She told me that the guy I saw was new and did not know the the system fully. If I rang back and spoke to the woman on the department and told her that I had always worn real hair she would be able to offer better advice.
I contacted her and as it said real hair on my prescription I could now go the the wig supplier and order 2 real hair wigs. Only thing was that now the prescription charge had gone up to £230 per wig... £460. But that is a lot less than the £4000 that it would have cost if I bought them myself!
Unfortunately what I have been offered is not the same across the country and it can be a postcode lottery as to what others might be entitled to.
Please click on the below websites that have up to date information that you can follow. I hope that by telling you my experience this will help you whether you are about to go for an appointment yourself and are now more informed or like me you have not bothered with the NHS for some years... It may be worth a shot!
http://www.hairflairdesigns.co.uk/nhswigs.html
http://www.cancerhaircare.com/department/visit_your_local_nhs_wig_supplier/
Please visit my website
www.alopeciabeautytips.com where you can see how my story has been in the Daily Mail, GMTV with Lorraine Kelly, Marie Claire and how i have worked with the little princess trust charity and Trevor Sorbies Charity 'My New Hair'