Replies to This Discussion

Permalink Reply by Katherine on November 23, 2017 at 1:20pm

I share your pain! It seems to depend on postcode / local healthcare provider..your experience sounds really frustrating and probably only too common.

For me, we have Community Dermatology in my area which is shambolic. Four cancelled appointments, often cancelled on the day they were due to happen, and when I did finally see a Doctor I received my diagnosis in a letter!

I then went on a waiting list of 179 people for a biopsy...so still no actual confirmed diagnosis. Once I have the results back from the lab I am going to ask to be referred to the specialist in my area who seems to be a leading researcher on FFA. In the meantime months have gone by...and with them, loads of hair.

Wishing you well on getting treatment and getting something soon. And if I find out how to make this whole process somehow work (albeit by begging for referrals, or complaining to the health trust) I will let you know xx

Permalink Reply by Airam-FFA on November 25, 2017 at 12:34am

Hi Katherine

I wish you every luck with getting to see a specialist dermatologist. I practically had to beg my GP to refer me. At first they actually asked me if I could afford to pay to see the specialist who I wanted to see in London; then they said that my referral request would be discussed at ‘the next panel’- This only sits every three months. I had heard nothing so wrote a letter. I received a disappointing letter in return, it stated that as there was little success rate with the treatment of FFA, then they would NOT refer me. You can imagine how frustrating and disappointing this was. The letter also stated that I could try to ask my dermatologist for a referral. As I said before, I did not see the same local dermatologist at each appointment. I did ask each one I saw for a referral, and eventually the last one I saw said that she would - but, it wasn’t until the second time that I saw her, that she apologised that she had forgotten to write the referral letter. After she did ask for the referral, I did hear from Guys very quickly. My case has now been passed back to my own dermatologist, and they can refer me back to Guys, BUT now it looks like the dermatologist who referred me is not available anymore, I fear that the whole referral saga will start once more. :(

I am trying not to get too upset and stressed by all of this, but it is so frustrating. All I can do that might, or might not help, is to eat healthily and be thankful for all that I have that is positive in my life.

xOx

Permalink Reply by Katherine on November 27, 2017 at 5:59am

Hi there

Oh my goodness, this is indeed a nightmare! It's like being stuck in a surreal alternative dimension... I started to think that if I could go private I'd get better care. But in my case the specialist I want to see is only NHS, so I'll have to keep pestering to see him! We are one step forward, in that I had a scalp biopsy on Friday, so once the results are back I can begin a small campaign to get referred again.

On this forum there's evidence that some of the drugs being prescribed have a reasonable success rate of arresting the disease, so the letter you received must have been such a blow. It's as if decisions are being made on the basis of cost, and the wrong statistics!

Like you, I have changed my diet. Also doing acupuncture. At least I feel pretty chilled, which helps manage the stress of it all. Good luck! Keep us updated! xx

Permalink Reply by Airam-FFA on November 27, 2017 at 1:38pm

Hi Katherine

I too had Acupuncture and Chinese Herbs when I was first diagnosed. But I don’t go anymore as I can’t justify the cost at the moment.

Dr David Fenton at Guy’s is the specialist who I found to be the most informative and helpful.

Read up on the contra-indications of certain medications. I am not prepared to take anything that might damage my health. The effects of FFA are cosmetic, so I would rather have to eventually wear a wig rather than reduce my eyesight :/

xOx