Sticky Blood-Hughes Syndrome Support
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For those who was discharged from St Thomas's in London

After a long process of making a complaint to St Thomas's, about my discharge from the Lupus Unit, by a certain doctor who I have never met, and after nearly a year, the Ombudsman have found the doctor and St Thomas's, to have failed me. The ombudsman has upheld part of my complaint,, and put recommendations in progress. I was unable to discuss the matter until after the investigation. I await a reply from St Thomas's. For all of those patients who was discharged and left with no consultant care, should go down the complaints procedure, taking it to the Ombudsman, if all channels have been exhausted. How many more patients have been failed?

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Very encouraging news. Well done for continuing with the battle. I hope they resume the care that you need

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No I have been seeing Prof Hughes, but looking to be transferred to a consultant in Yorkshire. I just thank God I was able to see Prof Hughes. Other wise I would have been left high and dry.

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Well done, I frequently mention on here that patients should give feedback, in particular if they have a positive experience, as often people forget that bit, if I have very good care at any of my hospitals either for myself or the children I leave feedback, equally if it is not so, I will give constructive feedback outlining what went wrong and what could be improved. Also people can leave comments on NHS choices. Apathy gets people nowhere, well done for your excellent staying power. As you know as Administators, we certainly stuck up for the patients on here and continue to do so! MaryF

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Thank you Mary. I know you did. And what supportive group we have on her. x

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Well done, congratulations.

XXXX

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Thank you. It has been stressful, but I knew I had to follow the complaint through. It was bad medical practice doing this to patients.

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You were discharged by a doctor who had never seen you? Boy, does that smell fishy!

Ginz

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Happened to me, too!

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Good on you for persisting & getting a result.

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Thank you.

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Well done. Had the same experience and now have be ill for 3 months with heart/lupus condition - weeks in hospital. Ask your GP to refer you back. Dr you Know Who has retired. Best wishes - you are very brave!

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Thank you. something had to said, has there is quite a few hundred patients who have been discharged, leaving them without specialist care.

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I heard Dr you know who was in the Ebola region!

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Hello bernieembleton I was also discharged from St. Thomas' Lupus Unit by a doctor that I had never met. I am interested in getting in touch with the Ombudsman any advise on how to go about it please.

Regards CaroleJ

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Well done. Does anyone at the Ombudsman's office express aview as to whether others in similar situation should follow up with their own complaints? Might such follow up help drive the message home?

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They will only look at individual cases, and yes it will drive the message home, as St Thomas's are to be monitored now.

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Hi, you have to go down the channels of complaining to the Chief Executive, if no joy there you can get the address of the ombudsman on St Thomas's web site. You have to put your case in writing, that you was discharged by a Doctor you have never met or been under their care. Stating how vulnerable it has left you. Hope this is helpful.

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Thank you so much you have been very helpful to me.

Keep well, regards Carole

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You are welcome, and best wishes.

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Hi, It is funny but for me the word "Ombudsman" you mention is a Swedish word. Like Sjögrens syndrome. Sjögren was a Swedish eye-doctor.

Well done from Kerstin

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Well Done Bernie for getting this great result despite not getting any support from where we would have expected it to come from! Im really grateful for all the members who signed the Petition and who continue to support it - as Im not sure that things have yet improved. As Mary says we certainly stuck up for the Patients on here and will do everything we can to support them going forward.

For me it seems totally idiotic that a service which was the model of the country as well as Europe was being run down despite the excuses we heard. They insult our intelligence with some of the statements that are written.

We are a voice that needs to be heard and we can if we stick together. What you have done alone Bernie is as has been said very brave and I also hope all those that signed the petition saying that they too were discharged follow suit as they have nothing to fear by doing so. it is against NICE guidelines what they did and are doing, so Im not surprised your complaint was upheld.

Well Done! xx

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Thank you so much APSsnotFab. Like you and Mary, you all give very good support on the forum. For those patients who have been discharged, please do not give up. The Ombudsman is there to help you, and it's wrong that certain professionals bulldozed their way through, by discharging patients and then to take away, what was a Clinical place of Excellence. As APSsnotFab says. They have gone against NICE guidelines, and your LEGAL right to choose where you receive your care.

The OMBUDSMAN can only deal with individual cases. Do not be afraid. xx

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Ps The Ombudsman will give you support :-)

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