At last a proper referral

[Greenmil3]

Just an update. After being formally diagnosed by professor d’Cruz at the lupus clinic at Guys Hospital they thought my local rheumatology clinic would take over! Went for my annual check and his registrar could not believe no help or even contact from my neuro or rheumatology at the local hospital! So they are referring me to the specialist haematology APS clinic at Guys. Are getting a new MRI done to compare to the last and if required referring me to Neuro at Guys to see I think Paul Harris and are allowing me to increase my INR. At last I seem to be getting somewhere with a clinic that understands my Cerebral APS

[MaryF Administrator]

Well done, excellent progress! MaryF

[Greenmil3 in reply to MaryF]

Thanks Mary I thought I was going insane and this was just my lot in life was such a relief for the Reg to be as shocked at my treatment as I felt as I said to her it’s only this app that’s kept me sane

[MaryF Administrator in reply to Greenmil3]

I went through similar with myself and family, so I know how you feel. MaryF

[lupus-support1 Administrator]

Absolutely shocking behaviour - in fact, it is negligent behaviour by your local team. They ought to be reported.

The good news is that you will be under the care of Guys!

With good wishes,

Ros

[Greenmil3 in reply to lupus-support1]

Ros I just don’t see the point reporting them yet but I am going to write and see what they say!

[lupus-support1 Administrator in reply to Greenmil3]

To be honest with you, I wasn't necessarily urging you to report them. It was more a way of conveying how badly you have been treated! You must do what feels right to you. I think a good start is to write & see what they say. I am hoping it was an administrative "cock-up" because the NHS is understaffed. However, this is not an excuse.

The problems came as soon as Dr Hughes was "retired" from the NHS which led to a reorganisation via King's College, followed by re-routing patients from Tommies (The Louise Coote Lupus Clinic) to Guys. I saw no valid reason to do what they did in terms of patient care. As I was told: it was a political move by hospital administrators.

There is usually a system for complaints. For example, at St Thomas' it is PALS ie a patient association.

Good luck & please let us know what happens.

With good wishes,

Ros

[HollyHeski Administrator]

Oh Im so pleased for you, someone supporting you at last. Hope it continues and you get your answers.

[Greenmil3 in reply to HollyHeski]

Holly thanks yes it is a relief as I’ve been getting worse all year with a decline in cognitive ability! So hoping they can get that stopped I’m not that clever to start with

[hihannula]

Great news and what a relief for you.

[Greenmil3 in reply to hihannula]

Thanks hihannula it sure is

[Stereolover]

Hi, Prof D’Cruz diagnosed me back in 2007. I have never been checked since by anybody in my area. I’m currently in a battle because I want to be referred back to him whereas my GP surgery all of a sudden don’t want to send me out of the area - bit late for that! I’ll know more tomorrow after my ‘telephone consultation’ with someone who I have no idea is.