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[johnnyb100]

Hi I am John, I was diagnosed with lupus in 2011 February on my birthday, the diagnosis was a relief as the previous 5 years I had health issues that were lupus related but was just treated for the problem. I was diagnosed by Professor Chakravarty within 5 minutes of seeing him. He is now retired and has not been replaced so have had 4 different registrars since.

Friday I turned up waited for over an hour for 6 monthly check up and was then told they have no consultant and clinic should have been cancelled but wasn't due to an admin error

John

[blondie22]

Hi john that is terrible. Are you living in the UK? If so I have an address there you can write to for you to complain.

I complained and got an appointment a week later. Hope that helps x

[johnnyb100 in reply to blondie22]

Hi I live in Essex, had rearranged appointment today. Went ok but got a text yesterday to say it was today at 12.30. Tried to change due to work, in the end had to take a half days leave John ps are you ever in London

[blondie22]

[e-mail] That is the email address you can email to complain about the UK nhs. All the best x

[Bronagh2015]

That really isn't good enough John, I agree with Blondie and the one thing I have learned over 20 years with this illness is that you have to fight your own corner and if you haven't the energy to do that a family member or friend should do it for you. Good luck.

[Paul_Howard Partner LUPUS UK]

Hi John,

I'm sorry to hear about the service that you have received following the professor's retirement. Is your GP referring you to another hospital?

[johnnyb100]

Hi after appointment cancelled due to no consultant, received a voicemail on my phone saying now 12.30 tomorrow. I phone and get through to hospital after 15 mins. I explain that working in London I would have to leave work at 11.00. Told no other appointment next one is January. So I am having to take a day off. Then when I got home washing machine has packed up. Not a great day John

[Ninnybubbles]

Hi John

Never a good time to be diagnosed, not good though on your birthday.

At least you know now and hopefully you are getting the right treatment.

What hospital do you go to for your Lupus.

[Ninnybubbles]

Hi John

At least you now have a diagnosis, although not the best news on your birthday.

Hopefull you are now getting the right treatment.

What hospital do you go to?

[johnnyb100 in reply to Ninnybubbles]

Hi I went for follow up today, hospital is Queen's in Romford

[Ninnybubbles]

As you work in London you could always ask to be seen at The Louise Coote Lupus centre. It has now moved to Guy's hospital.It specialises in Lupus.

I was originally seen at Central Middlesex hospital by rheumatology

Most rheumatology depts only know the basics of Lupus.

LC centre have really helped me and are great at giving support.

I went for my check up yesterday.

I hope your follow up went well.