Moorfields vs local

[Guest guest]

Hi Leah

Welcome to the group.

Moorfields Eye Hospital in London probably sees the majority of kids

with BPES, but that doesn't necessarily mean that your treatment

will be sub-standard elsewhere.

I am a firm believer in a second opinion. If I were in your

situation, I would go and see the eye surgeon that you have been

referred to and find out how they would manage Abbie's case and how

much experience he/ she has in BPES. They can also immediately

answer questions that you will have.

Also ask to be referred to Moorfields and then you can make your own

mind up as to where you want Abbie's surgery to be done. You may be

able to get her vision monitored at your local hospital and surgery

done at Moorfields. There are quite a few of us that don't live in

the London area that go to Moorfields for surgery.

My daughter, Kirsten, was initially seen at Moorfields by Mr Collin

as we were living in London at the time. She was referred by her GP

and we have been fortunate to have medical insurance that covered

her treatment. The only difference this made to her management was

that when her surgery was cancelled at Moorfields in April due to

their closing their theatres for a week, we were able to get another

theatre date at fairly short notice at Harley Street Clinic where Mr

Collin did her surgery, as opposed to waiting for an available slot

as an NHS patient at Moorfields.

Fortunately the surgery for BPES is not urgent in the majority of

cases. Time is on your side.

Regards

P

--- In blepharophimosis , " leara27 " <leara27@...>

wrote:

>

> Hi ,

>

> Good luck for Kirsten's operation next week. I hope you don't

mind me

> asking about it. My baby Abbie has been referred to an eye

surgeon in

> my region's large hospital. Is Moorlands the expert centre for

the

> UK? As BPES is rare I'm worried they will not have a wide

experience

> of the procedures. Obviously I want Abbie to have her surgery

done by

> the most experienced team. Should I ask to be referred there

instead?

>

> Thanks for your advice,

>

> Leah

>