Anyone who was discharged from St THOMAS'S should take the complaint to the Health Ombudsman. They can only look at individual complaints. I did include all of the people who had been discharged in my complaint, and was told the above. I hope this is of use. I am in the process of having my complaint investigated by the Ombudsman. Bernie
Anyone who was discharged from St Tho... - Hughes Syndrome -...
Hughes Syndrome - APS Support
I should think that is a difficult one possibly driven by the NHS policy change. I think it's an attempt to cut the ongoing costs to maintain existing patients who are / have been diagnosed already. I notice this trend in other NHS hospitals which have been so busy cutting costs. I'm not sure where about in UK you are - very tricky indeed!! (The only option would be going private, of course)
This is what I have done. Patients do not need this when they are ill.
I wonder if this could well be something to do with the massive change/increase in healthcare expenditures in the international capital of London as Britain had experienced with ever so broadening "EU" which now include very much poorer "EU" nations..I have no issues with free-migrating policy within EU, especially, from the poor EU countries to Britain as they obviously are forced to come to Britain entirely legally, for survival. There was a very candid program on BBC of late. Without descending into a silly scaremongering, I would be surprised if there had been no impact on the NHS as a result. I'm only guessing without any weird prejudices. It's a little odd that London NHS hospitals need for cutting costs had gone so extreme in recent years.
I have been discharged now three times,the first two with the smiley "happy to see you again" and on my discharge letter stating the same.
My most recent discharge it wasn,t siaid and I notice that my diagnosis has been changed to obstetric APS
I have emailed my consultants secretary with things I forgot to mention at my last appointment, and stated that I feel high and dry when no follow ups are booked
maybe I dont need to be seen anymore if it is obstetric as I will not be having any more babies?
But what about my current symptoms
I have asked for plaquenil but have been told there is no evidence to sugest it helps with fatigue, but so many people on here say it does??
It states in my last letter that my brain fog and fogetfulness are due to my daytime sleepyness
in my list of diagnosis as no2 under Obsteric APS it says "primary idiopathic hypersomnilence"
this has been listed for years and has seemed to have stuck even though I know that this is incorrect as with this people who nap do not go into rem when napping and not only do I go into REM, I also have sleep paralysis on waking from naps
All the probs with my arms are put down to my thoracic outlet but again I do not think this is correct, because what about the flapping and tremors
All my letters keep saying that my recent blood work is negative, but I havn,t even had bloods taken at the last 4 appts
I am confused and fed up, but wary of going to the ombusman, as in 2007 I made a complaint about my gp and was prompty struck off
'I am confused and fed up, but wary of going to the ombusman, as in 2007 I made a complaint about my gp and was prompty struck off"
It is so sad to read what you have been through. Unfortunately, I do feel that many of us have a similar story to tell dealing with one's NHS GP Surgery..arrogant and unhelpful, never admit their own faults at times, I'm sorry to say there ought to be a much better way to keep them far more competent than what they are... As for the sudden change of your diagnosis, it must be so deeply unsettling for you...Wonder if we might/may need a list ..a list of doctors at St Thomas you did NOT have a good experience with...consultants to AVOID.. I seem to keep hearing negative reviews from other posters and what you have experienced may not be one-off or unique to you..Just a thought x
Do not give in. You should have follow up care, regardless of not having anymore pregnancies. You should be on some form of anticoagulation treatment long term. Is there any specialist Rheumatologist's near you? I live in East Yorkshire, but travel to London to see professsor Hughes. I respect some people cannot afford to travel that far for private care. Do go to the Ombudsman. I had to change my GP, as he was not giving me the right care. Its your body and your life. All the best.
There's lots going on at the lupus unit which IS in the process of being moved to guys. (To improve services ..... I was told)
Wow..no more St Thomas' Lupus centre..a major change by the sound of it...thank you for sharing, overnighthearingloss..x
I was told all the doctors are transferring over. Supposedly the centre as is, is being given over to the pain clinic which is next door as part of the redevelopment of the Gassiot House building
I think most people have got used to the idea of catchment areas for schools. I think it is going the same way for hospitals. I am London based and have considered a move from the capital for years but worries about good health cover being available to me if I move is something that has tempered my decisions.
Anyone falling foul of the catchments can always exercise the private option (what a surprise) but the idea that we are all free to be seen where we choose doesnt really apply when there are cutbacks everywhere.
"I think most people have got used to the idea of catchment areas for schools. I think it is going the same way for hospitals. I am London based and have considered a move from the capital for years but worries about good health cover being available to me if I move is something that has tempered my decisions. "
I hear you - it is a tough situation. I often wondered or suspected that you will be much better cared for / and live longer if you are nearby top London hospitals particularly if you have a chronic health condition which demands top experts...
Living in London or living in the South East is horrendously costly. We have railways and motorways...having said that I still know what you mean. It's not that simple, yes? x
You are so right. I have challenged my GP, as this has happend to me with most of my consultants where I live, but I have stood my ground with them. One consultant has put it in writing to me, that CCG's are doing this. The media should know, because it is the present Government who instructing the NHS to do this. To introduce privatisation by the back door. Bernie
It might be worth asking questions such as..influx of other EU migrant population increase in London and home counties..are politicians aware of any increase in budgets allocated to cope with this type of change encountered in major London hospitals, accordingly? I suspect money is clearly the issue.
I also think that based on my own experience, if I depended solely on NHS without private healthcare, I would have been so worse off over the years. I currently have two consultants since a few years but some day, I do suspect these wouldn't be there in the future and I need to brace myself for that to come. x
You are right. I did write to mine, who said he would look into the matter. Since i took the matter to the Ombudsman, I not had a reply back from the MP. I will be writing again to remind him, that us voters are the ones that give MP's a job. People please contact your MP's as this is happening all over the country. Bernie
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