Video guide to the Behçet’s Centre of Excellence

[Legomum]

We made this video to help children and their families attending the Behçet’s Centre of Excellence in London. Professor Fortune and her team approved it and Barts NHS Health Trust have uploaded the film to their YouTube site today. It’s actually relevant to all ages as it is the same clinic location and team for those being assessed for Behçet’s aged over 18. Hope you find it helpful. Do give it a thumbs up on the site if so and feel free to share the link and raise awareness of this rare disease and the aim for earlier diagnosis

m.youtube.com/watch?feature...

[lesleyg]

Hi, I watched the video and loved it! I thought it was extremely professionally put together. Hopefully you will be asked to put together some more videos for older sufferers as well 😊. I was going to say videos for adults but it didn’t sound so good. 😊Lesley

[Legomum]

Thank you for your encouragement Lesley! I have been a Behçet’s patient in the London Centre for over 18s/ adults/ “grown ups” since 2004 so I have watched the service evolve over the years. I remember long hours in cramped waiting rooms of an older hospital building, terrified to talk to anyone else waiting, yet also desperate to know more about who the other patients with this rare disease were and what we could learn from each other. Then there was a period of Behçet’s patients in London sharing a waiting room with the dental emergencies, which included poor people suffering pain and bleeding from facial injuries sustained in a fight the previous night. I cannot tell you how fortunate we are to have moved on from that to a dedicated behcet’s clinic and waiting area, with a Behçet’s support worker introducing herself and encouraging patients to talk and learn from others. It really is amazing there is a regular Behcet’s clinic just for children now, and we just hope our daughter will avoid the negative aspects so many go through with a rare disease: eg people not understanding, or doubting the reality of a very real vasculitis, fearing everyone knows about your embarrassing symptoms or being too embarrassed to admit to the ulcers and other weird things that can happen to your body, and the challenge of pacing life and accepting the ups and downs yet still having hopes and dreams despite the disease.

Looking back at our video, it is actually all the same for my own appointments at the Behçet’s clinic as the Paediatric clinic: same journey, same clinic 6, just a much busier waiting room filled with adults, filling in the same detailed forms, and seeing the same doctors.

I am not that much of a Techy person but I phone imovies

[Emily-123 in reply to Legomum]

Is the children’s clinic a new feature?

Whenever I go, I’m in a waiting room with adults (im under 18) x

[SCMW]

Yay!!! Loved it...! Went to the clinic as an unsure 39 year old having been quite a sickly child & never having had amazing health. Confirmed diagnosis on my first visit in May. I’ve just had my first follow up. It’s nice to show other people the video so they understand who you see etc, such a great idea and so well done. I asked what to expect the first time I went & was really grateful for others letting me know on this forum & generally helping with other questions and too. Also what a brave young lady for starring so well!

[Ann1-74]

That was so informative. Loved it. Well done!

[Emily-123]

Children’s clinics???

I’m under 18 and am seen with adults in the London centre. They did mention me being seen in the children’s clinic but I wasn’t even aware there was one

[Legomum in reply to Emily-123]

Ask the Behçet’s clinic admin (Bridie S and her colleagues) if you’d like to be seen in a Friday Behçet’s clinic for children at the London C of E.

I am not sure if they are defining “child” as 16 or 18 actually, as my daughter is only 8.

However the children’s Behçet’s clinics are only quarterly at the moment so less choice of appointment date than adult clinics, and the main difference I have seen is the waiting area is more peaceful (not so stacked up with adult patients).

I am hoping in the future they will have the same Paediatrician attend the clinic, to build relationships, share knowledge, advise re medication etc but I do not know their longer-term plans. Will ask and keep pushing the agenda for children coming in to the service When I look at the children’s services at another NHS London hospital, Evelina Guys Children hospital then we have a long way to go. Evelina has a helter skelter for children in the waiting room play area, play specialists and dedicated phlebotomists to take children’s blood tests without them being distressed plus a cockapoo therapy dog. Good to have something for us to aim for!! evelinalondon.nhs.uk/childr...

[Emily-123 in reply to Legomum]

Thank you for this!!

As a 16 Year old I feel so out of place in a waiting room full of adults. Think it’s a great plan.

I will get in contact with Bridie! im under peads for everything else and the waiting rooms are very kids and teen friendly!

16 is an awkward age!

Thank you again

[Emily-123 in reply to Legomum]

For those considered a “child” is there the option to be seen in the children’s clinic? Or is it compulsory.

You may be unable to answer this

Thanks

Emily

[Legomum in reply to Emily-123]

Not sure at the mo,but have sent an email tonight so may know next week!! I suspect they let people aged 16-18 choose if they have already been in the system, but ensure any new referral under that age goes into the child clinic. There probably are not that many?? We should say hello in the waiting room, seeing as I am in both adult for me, and child clinic for my daughter!

[Legomum in reply to Legomum]

Actually I know of a mum of a 14 year old girl who attends london clinic and would love her daughter to meet another teenager with Behçet’s. Can I put you in contact?? There is the annual Behçet’s “family day” where everyone could meet up, usually in the summer.