"I liked the fact I had been referred ..."

About: Royal National Hospital For Rheumatic Diseases

(as the patient),

What I liked

I liked the fact I had been referred to The Mineral Hospital as it is recognised as being of excellence in its treatment of many rheumatic illnesses.I regognised that they have a good reputation regarding the use of hydrotherapy in the mineral pool.

What could be improved

If things had gone on to what I had been led to believe I would have been happy as no-one else has been able to help me and the condition I suffer from.Unfortunately after a year no advice has been offered,my GP was not informed that several of my blood tests were wrong and tagged by the lab as abnormal and no diagnosis or treatment has been suggested or offered. As I live less than 2 miles away from the hospital and know they bring people by transort from many counties away I was depending on their expertise to offer me some help.so I am very dissapointed in the way I have been treated,a Doctor at the Royal United Hospital had to contact my GP to see if she wanted me referred to a liver specialist having looked at the blood test results,several of these were tagged as abnormal.I cannot believe that these blood test results were ignored.All of this has made me very depressed,I was told by The Professor that after being accessed in the pyshiotherapy department,he would have a clearer picture about my treatment especially the chance of hydrotherapy,I am unsure what happened to that suggestion and as a sports injury therapist myself I even more struggle about how the pyshiotherapist could have offered any suggestions to the professor about my treatment as he did'nt even examine me,I was set a series of paper excercises and I don't believe he has even done a report as it was'nt mentioned to me,I feel the whole experience has let me down badly and people should not place to much hope in treatment if any offered.I am sure that these comments will not be publised,however if you could pass on my comments and email address to my Dr at the hospital I would appreciate it.Thank You.

Anything else?

The Professor I was under to start with did blood tests for Lupus, which is in my family and of which I have many of the symptoms unfortunately he failed to withdraw the drug Warfarin for the required time before the blood test was done! This was last year, I then got lost in the system and had to make arrangements myself to be seen again when I became concerned about the time delay. I had another set of blood tests done after taking myself of of the drug Warfarin, I did this myself only because I have medical training,no DR told me!!These test results showed abnormalities that should have been reported to my GP at the very least.When I rang up the hospital 3 months after the tests were done and asked for a copy of them I was told they would be sent to my GP,however after 3 weeks my GP had heard nothing,so I again rang the secretary,only to be informed she had forgotten to do this,on seeing the blood test results I contacted a friend who is a biochemist and he told me that in his opinion the results of the blood tests and my symptoms could suggest I have Lupus,I already have scarring on one of my kidneys and am suffering intractable pain that is not relieved despite being on morphine,I had multi organ failure 4 years ago, this happened because my symptoms were ignored and I nearly died I was on intensive care for 10 days.With my medical history,I am epileptic and diabetic have multi syptomatical health problems at the least I expected a follow up appointment,maybe I am just lost in the system again.For a hospital of excellence I did expect to be treated with care and dignity,however I feel let down and left with no answers,I am awaiting a left hip replacement in June I am only 59,and don't know who to turn to now,I feel a label of Fibromyalgia placed on me years ago by a GP not a specialist is covering up something more serious,I cannot afford private health care and had placed a lot of trust in The Mineral Hospital,when I was referred initially.Help!

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Response from Royal National Hospital For Rheumatic Diseases

We are very sorry to hear of your concerns regarding your experiences of the Royal national Hospital for Rheumatic Diseases and apologise for any distress caused by this situation. If you would like to discuss your concerns and how we can work towards resolving your concerns please contact our Patient Advice and Liaison Service (PALS) on 01225 473424 or email pals@rnhrd.nhs.uk