I have just received a letter today saying the clinic i have attended for the last 8 years at the Lupus unit at St Thomas's is discontinued and questioning my diagnosis, which i was diagnosed with Seronegative APS, Sjogrens/Lupus. by Prof Hughes. I have an appointment on the 24th September and i have had to book Train and accomodation, to attend. ? where does this leave me, as the services where i come form are poor. Has anyone else had this problem. I do not want to stop attending St Thomas's. Any advice welcome.
Letter from Guys and St Thomas's : di... - Hughes Syndrome A...
Letter from Guys and St Thomas's : discontinuation of clinic at lupus unit
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bernieembleton
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I'm afraid this is the case with most APS patients who attended the clinic. It is being amalgamated into the Rheumatology Services at Guy's Hospital at the end of this year, and they will only manage very unstable lupus patients.
A lot of APS patients have chosen to move over to Haematology under Prof Beverley Hunt and Dr Karen Breen - also based at Guys. However, with the new CCGs your GP may not be able to refer outside your locality so please have a look at our APS specialists directory - we created this following the House of Commons decisions about CCGs last year:
hughes-syndrome.org/self-he...
bernieembleton in reply to
Thank you so much Kate H. If This is the case, then i may be better seeing Prof Hughes or Prof Kamashta privately. I knew it would be down to budget. I am in a delema at the moment ,as my GP practice do not have any permenant GP's until October, therefore do not know my full history as they are all locums. I was getting excellent care at St Thomas's.
Is the Lupus unit closing completely?
It is almalgimating with Guys, and they are discharging some patients.
I still find that reply incredibly confusing. Guys and St Thomas have always been linked. Is the Lupus Unit at St Thomas closing?
It says in the letter, that the clinic has discontinued.
in reply to overnighthearingloss
The lupus unit is going to be under the Rheumatology department at Guy's. Patients with uncontrolled lupus will be seen there but that's about it. Anyone with APS should try to be transferred under the card of Prof Hunt and Dr Breen.
bernieembleton in reply to
I also have Sjogrens and a strong family history of SLE.
Thank you yes it is that name. I am in the process of emailing Prof Hughes. I had a very strong feeling this would be political, at the coast of my health and many other suffers.I will contact PALS.
I have emailed Pals at St Thomas's Thank you for all the advice. Bernie x
I think you may find that if you are seronegative APS they may try to discharge you back to your GP. I am in the same position as you with Sjogrens too and it has only been through the support of Prof Hughes thaI am now getting good care.
bernieembleton in reply to
Yes I am seronegative. I have contacted Prof Hughes and complained to Pal's at St Thomas's. We should not be having to have all this stress with the conditions we have. There is hidden agenda's going on here, due to the changing of funding with the NHS. Hopefully if we all complain this will alter the actions of certain bodies in the NHS.
Hi could you let me know the name of the Doctor, who is to start at Georges hospital please. I have contacted Prof Hughes re to see him again privately, if i do not get a result with St Thomas's. Thanks Bernie.x
Yes you are right. I worry that patients will die due to this bulldozer attitude, as we are at I risk given the nature of our conditions. Thanks for the link. The Nice Guidelines was my next area to look at.
Ok thank you.
I have an appointment to see Prof Khamastha at the Lupus Centre for October. I am to assume therefore it will get cancelled? Thanks kath
Contact Prof Khamastha's secretary to make sure. I have wrote to the Chief Executive at St Thomas's to complain and to be reinstated.
It has got underhand then. I for one is not happy and many other patienst are having thier patients choice taken away. What has happened to following the NICE guidelines. All the hard work and dedication that the team have achieved over the last twenty years. All the patients should back the team and make this known to the public
in reply to bernieembleton
Yes, I agree but the problem is the NICE guidelines are being met - lupus patients will be seen at Rheumatology and APS at Haematology.
Its not too late. Just seen your message. I had already said the same thing.
According to the guidelines - 'stable' patients no longer need to be under the care of consultants and are being discharged. We could see this one coming, hence the APS specialists directory. The only thing you can do now is write to the CEO of GSTT but, knowing how you have to fight for space in this place, once they've spent the money moving them out, they're extremely unlikely to put them back.
kathyD64 in reply to
Hi Kate i am not use to the new site and not been on here in a while but how do i access the APS specialist directory? cheers kath
in reply to kathyD64
Hi Kathy - it's on the charity's website under Self Help then Specialists in Your Area. The link is: hughes-syndrome.org/self-he...
Well, this is why we built relationships with APS consultants around the UK - they could potentially have APS units in their workplace which is was imperative to start this initiative AND to keep building on it. More likely that APS will be part of Haematology Departments - depending on how long the culture of 'centre of excellence' lasts - it's been going a few years so we will keep monitoring it.
Currently, we are working with the Unit where the 'unstable' APS patients are being sent - Guy's Haematology and are hoping to start a quarterly medical meeting with help from the staff there. People from this online community have also had a meeting in Bath as that seems to be a centre of excellence, and I have a feeling Wales will soon have one too.
BTW - 'unstable' is decided by their consultant, probably against a set of rules ...
While the HSF can't get involved politically with the closure of the Unit (please remember whose space we're housed in!), please do write a collective letter - patients have more clout when they join together and don't forget to address it to the CEO.
I am willing to put my name to a petition. They have a duty of care and that has been breached, by discharging patients without any disscussion to the person and not considered what their choice is and if it's what the patient wants. Only to say that you may be better cared for near your area.Which in my letter stated. Thats my choice taken away, and left without care now. Who do I turn to, if I have crisis?? as not many medics where I come from. Many do not have a clue how to treat you or understand how you feel. I have had first hand expierence in this with many medics.
in reply to bernieembleton
Bernie - where are you based?
bernieembleton in reply to
I am in Bridlington East Yorkshire
in reply to bernieembleton
Ahh, yes, we're rather thin on the ground for APS specialists in the Yorkshire area, but we do have a Dr Michael Martin who is based in Leeds. You could ask your GP for a referral as he is in your area.
bernieembleton in reply to
Dr Martin is due to retire,as my brother is a patient of his, and i do not want to explain myself again. I choose to go to St Thomas's as the care around here is very poor. I am not happy at all about the way matters have gone for me, as they have breached a duty to care and taken away my choice. Leaving me with no specialist care. How do they define STABLE? my conditions are never stable. Its disgusting what they are doing to patients. The media and MP's should made aware of this.
in reply to bernieembleton
This is the letter which was sent last year to Lupus UK last year:
Many thanks for meeting with us earlier this year. I am writing to let you know that the process of reassessing the services we provide in the Louise Coote Lupus Unit is now under way.
We are a national tertiary referral unit and over the years our workload has increased to the point where we are having difficulty providing medical care to patients with active disease. We have a large number of patients with stable disease who attend for annual review. Having audited our workload, we believe that most of this care could be delivered by General Practitioners and local Consultants.
We have decided that patients with very active lupus and major organ involvement would remain under our care. Other patients with stable conditions are likely to be referred to a local hospital and others whose lupus has remained inactive for many years, would be discharged to the care of their GP.
Staff in the Louise Coote Lupus Unit would be very willing to review patients if in the judgement of their clinician their lupus had become sufficiently active for more specialist treatment to be required again. Indeed we will have more capacity to promptly review patients with active or flaring disease once these arrangements are in place. We will be writing to patients to inform them of these changes to their care where appropriate.
These changes reflect what is happening in hospitals around the UK as part of the changes to the NHS including the new commissioning arrangements. I am very grateful to LUPUS UK for keeping your members informed about these changes and giving them the support they need during this period of change which some patients may find unsettling.
Please note there is no mention of people with APS!
bernieembleton in reply to
The sad thing is many Doctors do not know how to continue giving the care without a specialist's opinion. Wether the condition is stable or not, the patients who have been discharged are left in limbo. Its a bad enough battle to get doctors to understand your conditions. I have to stand my ground many times, as they do not know much about APS.
in reply to bernieembleton
PS. Can you let me know who is replacing Dr Martin once he retires please?
bernieembleton in reply to
Hi my brother went yesterday, and he has already retired. He did not get to meet the new consultant. All he knows is, its a female. I will try and find out the name.
in reply to bernieembleton
Thanks - I would really appreciate any info - you'll be helping other Hughes patients 
x
Thanks Kate. Am pleased to see Dr Creamer and Dr Patel and Dr Whiteways agreed to be added. Just to mention in May 2014 sadly Frenchay Hospital is closing and the services will be moved to Southmead Hospital - all the telephone exchanges are changing also but hopefully they will update you of these changes. Hope you are well Kath xx
in reply to kathyD64
Thanks for letting me know Kath. Wow! I can't believe they're closing Frenchay down - I had many a visit there as a child... I always thought it was better than Southmead, but the powers that be must have decided it was the best one to keep going for the Bristol area.
Fortunately, the South West does seem to have a good share of APS specialists who were all happy to be included in the directory - places that struggle are Yorkshire and Devon and Cornwall.
Kxx
That is true . They are not been seen.
in reply to bernieembleton
They are on the charity's website: hughes-syndrome.org and not on this patients online community site. However, APSnotFab has posted a link on here too. The directory has been available since March this year when the Hughes Syndrome Foundation launched the new charity website - it was reported on here, in our newsletters and Facebook so I was hoping it had manged to reach everyone - clearly not! I will also put a reminder in the next e-news update I do too - hopefully, that will get the message across
MaryFAdministrator
I was so pleased to see the strong speech made at our last Hughes Syndrome Foundation Patient's day about Seronegative Hughes Syndrome, and the clear guidelines, about not turning patients away with poor or no diagnosis if they had the clear clinical symptoms, with past events showing a history of this disease. I have recently attended London Bridge where I had a conversation about the volume of patients being treated this way, and also how we need clear information on our charity website about this, patients are angry and disillusioned about being on the end of unethical institutional attitudes which are putting lives at risk! Mary F x
Well said Mary, all of this should be not be allowed to happen to patients, who are been put at risk. I could not go to that day, but would have loved to have been there. Its scandalous what they are doing. If you saw the letter I got from a said Dr Gibson, intimating that, if I have seronegative APS, that was diagnosed by Prof Hughes, as made me not happy at all. I know full well I have it, and responded well to and continue to respond to the medication. Its disgusting the way they have gone about this, putting lives at risk and taken the patients choice away. Loud we have to be.
MaryFAdministrator
All patients should take a profile on NHS choices and complain loudly. Mary F x
Could not agree more Mary.
MaryFAdministrator
Agreed! Mary F x
Man, suddenly I feel concerned for my future as I have APS, Lupus SLE (although that's stable due to the high potency of the immuno-supressants I'm taking for my transplant!!)
How can anyone get away with making such major changes without publicising it first??? I'm genuinely a bit shocked!
bernieembleton in reply to
You need to write to the Chief Executive, as they are playing with peoples lives.
I am so worried reading this. I have been diagnosed with APS on blood results, medical history and family history at my local hospital but was referred to the unit because my results and symptoms also strongly suggest SLE. I had my 1st appointment at the start of the year and got back today. The dr has taken no real case history and on the basis of bloods ("which although are positive, not significantly so"), he has discharged me back to the care of my GP and told me to stop taking my warfarin! This sounded extremely dangerous to me and I queried it, but he said I could have aspirin instead (I had a stroke at 31 and many TIAs since) and take NSAIDs for my joint pains, arthritis on my hands and severe TMJ pain (for which I am on antidepressants for). He also suggested a calcium blocker (my notes clearly state that I have a calcium deficiency and am on calcium supplements and a host of prescribed and strong supplements).
It did not matter in the least to him that I am very unwell. I have Raynaulds, ?sjogrens, chilblains and sores on my toes and have been suffering some form of renal disfunction for the last month (cyctoscopy and CT scan this week). Nothing I said would make him listen to me.
I am really upset and angry that he has told me to do so many dangerous things. He wouldn't even acknowledge the extreme fatigue I have suffered with for three years and kept calling it tiredness. I can barely lift my head most days when I have to get the children ready for school, a day at the shops or at work puts me into my bed for the rest of the week, and hanging washed socks makes my arms absolutely kill, let alone brushing my hair 
What do I do now? I cannot risk being taken off warfarin, which has helped balance, migraine and slurred speech symptoms. I am terrified. Please let me know what I should do here.
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