Depigmentation information - UK ONLY - Forum

Fellow Brits I need your help!

In November 2015 I was referred by my GP to see a dermatologist RE my worsening vit (now affecting at least 60% of my skin) as I had decided that I would like to go down the depig route and needed to know if it is even an option in the UK. After seeing the derm who is by no means a vitiligo specialist and rather just a standard derm she suggested she consult a specialist in London for advise. I left the appointment with a follow up appointment booked for March (the earliest she could see me again!) and soon received a copy of her letter to the London Vitiligo Centre at Guys & St Thomas Hospital in which she asked for advise on the depigmenting treatment of my vitiligo. I heard nothing between then and my follow up appointment. During my follow up appointment in March she told me she had not received a response and would try to contact them again but perhaps it would be good if I also tried to contact them myself. I left this second appointment and wrote a follow up letter (along with the original from the derm) to the London centre. I still have not received a response.

Today I called my derm's secretary in the hope of chasing up this painstakingly long process of getting nowhere to hear that the derm had not heard anything from London and that she had discharged me!

While banging my head against an invisible brick wall I am asking does anyone here in the UK have any information on where I should go from here?!

Thankyou

Hi Becky,

I'm so sorry you're having such difficulties and I totally understand where you're coming from. I'm undergoing depigmentation via The Royal London Hospital under a dermatologist called Dr Bewley. I finally started my treatment at the beginning of January 2016 and its not a perfect system (far from it!) but I'm grateful-it has taken me decades to come across a dermatologist who is willing to listen to what I have to say about my condition!

I don't know what part of the UK you're from and this may be part of the problem because different NHS trusts have different approaches/levels of understanding. Please speak with The Vitiligo Society about what is available in your area and challenge your NHS trust via PALS-the patient liaison body.

I also tried to access treatment at the same hospital your dermatologist mentioned but even though I'm a Londoner, it is so over subscribed-I had to fight with my GP to allow me to access a dermatologist.

Please message me privately if you'd like to talk about this further-I don't access the site so frequently.

Best wishes,

Ish

Replies

Ish May 4, 2016 at 11:03am

Hi Becky,

I'm so sorry you're having such difficulties and I totally understand where you're coming from. I'm undergoing depigmentation via The Royal London Hospital under a dermatologist called Dr Bewley. I finally started my treatment at the beginning of January 2016 and its not a perfect system (far from it!) but I'm grateful-it has taken me decades to come across a dermatologist who is willing to listen to what I have to say about my condition!

I don't know what part of the UK you're from and this may be part of the problem because different NHS trusts have different approaches/levels of understanding. Please speak with The Vitiligo Society about what is available in your area and challenge your NHS trust via PALS-the patient liaison body.

I also tried to access treatment at the same hospital your dermatologist mentioned but even though I'm a Londoner, it is so over subscribed-I had to fight with my GP to allow me to access a dermatologist.

Please message me privately if you'd like to talk about this further-I don't access the site so frequently.

Best wishes,

Ish
- Becky Harrison > Ish May 5, 2016 at 5:40am
  
  Thank you! Just to know it's possible here is a step in the right direction. I hope the process is going well for you so far!
  
  I live in Chester but I'm thinking a visit to a London specialist/Derm might be the only way at the moment...I'll go to another GP and see how I get on.

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