I noticed I could no longer access the 'health conditions' section on my NHS account.
I had a suspicion that there was something in the section that my GPs didn't want me to see, so I called the practice to see what was going on.
I was told there must be an IT problem and to reset my account - but everything else was fine so I indulged my 'paranoia' and asked recepton what conditions were listed in the section.
I then found out that I have been diagnosed with 'complex regional pain syndrome'. I was never informed of this diagnosis and I don't think I meet the criteria for a diagnosis.
It looks like the section was intentianally hidden to stop me from finding out about the diagnosis - even if t wasn;t have been diagnosed behind my back and offered no treatment or right of appeal.
Where do I go from here?
I am honestly gobsmacked, and feel more hopeless than ever about getting my pain under control.
I am feeling a really awful mix of emotions right now and I'm struggling to rationalise any of this. Maybe it can't be rationalsed, its just really awful treatment.
Please help if you can.
Written by
natherly
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High nothilda, I am presuming as this is on pain concern that you do have pain, so does a pain diagnosis hidden or otherwise cause you anxiety. ? If so then the best solution is to write to the surgery asking for a longer appointment to discuss this with your named GP or who ever hid the item. If its an incorrect diagnosis then you still need to discuss it with the Gp before maybe taking it to a complaint at which stage you would have to put it in writing. Not the easiest thing to resolve but you do have a right to challenge content of records, and you have a right to know what is contained in your record as the patient these are your records not the GPs as such. Unless they feel it is not in your best interest to know. Which is highly unlikely in this case. Best wishes if you decide to challenge the content of your records and the fact you were not informed of this content.
They have now agreed that I have a 'pain syndrome' but not CRPS. The surgery claim there was a technical reason for the missing sections on my GP health record, but I have still not got access back.
The diagnosis means nothing else will be done to find causes of my pain. It means every time something else starts to hurt, there is no point seeing a doctor - it won't be investigated, I will just have to deal wth the extra pain.
I have no way of knowing if they are withholdng info in what they think are my 'best interests' and don't feel I can ask - some of the doctors at this surgery seem sympathetic at least, and I don't want to anger them by pushing it.
As for getting incorrect diagnoses removed - I don't think its possible - I have a diagnosis of rheumatoid arthritis on file since my teens that I get asked about whenever I move GP - several doctors have told me I don't have it.
Sorry to hear you feel that you can't go to the Gp about your pain or at least have a telephone appointment. If you get a new pain it could be something else none related to the pain syndrome i.e broken bone , or new arthritis that could be treated differently. Cyberbarns suggestions are a good way to go but in this day of computers if something is wrong or altered on a computer can't always get it back.Having been through the access to records more than once I agree records do sometimes have errors in them and DRs do not like you seeing their reports as they are after all their opinion which as history shows can be wrong their human and make mistakes. But you do have the right to see them and have copies and challenge a mistake nowadays. Given time you will come to terms with it but do not miss out on the doctors if you are in bad pain , take care.
That's a horrible feeling to know that things have been going on behind your back, especially if your not being treated for them!
First of all if the surgery doesn't restore full access to your notes, you need to request a copy of all your notes. It would be best to go straight to the practice manager on this, because sometimes receptionists get things wrong and give the easy answer rather than the correct answer.
Then you can find out who diagnosed it. Once you have done that you can then go to them or their organisation and ask how and why you were diagnosed, why you disagree with it, and if they really do think that you have it why you haven't had any treatment.
This may mean going to PALS or back to the practice manager. You don't have to make a formal complaint straight away, but keep that in mind. Because just talking to the practice manager or PALS doesn't mean it will be a formal complaint.
A lot of doctors in this country are worried that if patients see their records it will make their jobs more difficult. They worry that patients will keep calling them to ask them to explain their notes. They are also worried that patients might see errors in their notes. Yes, you read that right! They don't think that is a good idea for patients to find errors and ask for them to be corrected!
However, in America where there was a blanket law that gave access to all electronic records to the patients all in one go, they didn't have any problems at all. There was no increase in work load for the doctors and the patients actually end up with better care.
So don't let them fob you off! You have a right to see your notes and ask them to make corrections. And you have a right to treatment too.
I was diagnosed with CRPS and not told too, but that was back in 2006 and things were a bit different. Patient access to records was not so easy or common but in theory I could have learned about it there. I've learned a lot and thought about it a lot since I did find out a few years ago. I believe they honestly thought it was not in my best interests to know. There was no cure and there are some horror stories online. Nowadays, though there's still no treatment that reliably works for everyone, there is certainly more hope. This is a great website with links to many others: defeatcrps.com/resources/
It makes no sense to me that leaving someone to wonder why they are in pain, and that doctors dont seem concerned about why - could be considered in someones best interests.
Being from the US I do not understand how your system works exactly but my first thought was wondering if this was more of a differential diagnosis. Meaning that he suspects it but it's not certain and therefore hasn't discussed it with you. Your doctor should be open and honest about all of his concerns regarding your health however it would not be to your advantage to antagonize him about this hidden diagnosis. What is currently being done about your pain? Is he treating it and if so how?
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