I have recently gone for a private referral for longstanding, but unexplained health issues. The condition I am seeking diagnosis for is not that common, but I fit the diagnostic criteria exactly and the specialist I've chosen is well regarded in this area. Unfortunately, it's something that GPs know very little about and it's extremely common for them to brush off the symptoms as female/hormonal/anxiety etc.
I have put off going for so long because I couldn't face the inevitable scepticism from the GP, but finally went ahead when my husband pointed out I need to do it, if not for myself, then because of the impact it has on the whole family.
Went for the appointment, to be greeted by one of the GP Registrars we get on rotation, as it's a teaching clinic. Their immediate reaction was that what I think I may have is very rare and therefore extremely unlikely. They did some basic tests, found something to back up what I was saying and required further investigation, so ordered some tests, which I have been for today.
I also picked up the referral letter today, only to find that in her covering letter they have clearly tried to make out that they think it's all in my head, then cherry picked elements of my medical history to back up that claim. Eg I had PND in 2004 for which I had anti-depressants and talking therapy, I also had some reactive depression to my husband having a severe head injury, through which I nursed him, way back in the 90's. They also pointed out that I had 'done a lot of reading' on the subject. 
I have had two lots of neuro investigations in the past 10 years, initially following an MRI scan that showed lesions and those results, plus various neuro-type symptoms meant the neuro wanted a full MS work-up just in case.
Then a few years later another after a black-out episode which A&E/MAU felt was a possible seizure I saw a locum neuro. I had a second MRI, but of a different, less finely tuned type than the first (my fault, as I requested the open scanner). Locum stated my MRI was normal (which is odd, as my normal neuro says it definitely wasn't, hence progressing MS investigations). He also said he felt my symptoms were probably 'hormonal' or perhaps stress - although I had told him I wasn't under any particular stress at the time. He questioned the number of episodes I'd had and was generally rude and dismissive - to the extent that my, normally extremely mildly mannered, dh actually spoke up during a consultation for the first time in his life and asked him to stop being so rude and say something helpful (should add dh wasn't rude or confrontational, just firm).
Locum then referred me for a 5 day ambulatory EEG. I booked the appointments (5 over a week) and then received a letter from the Locum saying I wasn't to attend for the EEG, as it had been decided I didn't meet the criteria and he would sent me an appointment to be reviewed in his clinic in the next 6 weeks. I didn't attend the EEG, as instructed, then received 5 'did not attend' letters telling me I was being struck off the neuro list for failing to attend. 
Called the EEG department, explained and asked them to amend my records to show I had been instructed not to attend by my consultant, then called his secretary to confirm I would be getting a follow up appointment, which she assured me I would. I never heard from them again (this was 2012).
I explained all this to the referring GP, as well as explaining that I hadn't chased them again, as I hadn't the strength or energy to carry on fighting to sort their mess out and that having been through all the tests, constant rounds of appointments that made me feel much, much worse symptomatically and still having no answer, I just wanted to stop for a while and manage my symptoms as best I could instead.
Referring GP stated in the referring letter that I 'failed to attend a follow up appointment with neuro', which is totally untrue - they never sent for me.
They have dredged up details of my reactive depression (reactive to my husbands serious head injury, which I nursed him through) from 20 years ago, my PND from 11 years ago and even a consultation for 'query eating disorder' when I was still at school, as well as pointing out that I haven't organised my smear test. Generally they've made it sound like I am a non-compliant, hypochondriac - which is pretty good going for someone that hasn't seen a doctor since 2012.
There are also clear errors in the history. It states I was on antidepressants in the 90's, when I have only ever had low dose antidepressants for my single PND episode (I have 3 dcs) 11 years ago. It says I had a biopsy appointment cancelled the year my first dc was born - but not what the biopsy was for and I have never even been seen for anything that may require a biopsy. My PND is down as anxiety and depression, with no reference to it being postnatal. There is also a reference to 'longstanding depressive symptoms' which isn't true either. Notes also state I am a drinker, when I maybe drink a glass on my birthday and during Christmas dinner but that's it.
Sooo, it seems I need to get hold of a copy of my medical records and then go through them carefully and make sure the multiple errors are corrected (heaven knows how many there are if there are this many in just a potted history).
I am really cross with the way this GP Registrar has skewed both her letter and the cherry-picked medical history (dredging up anxiety/depression stuff from between 11 and 20 years plus ago that hasn't been relevant for multiple years) to make it sound like I am either health anxious or someone that thinks up and reads about things to ask to be tested for. The reality is that I only ever go to the doctors under duress from my family and am better known for soldiering on than giving in and claiming illness.
I know that specialists in the area I'm being referred to say they are often faced with patients that are treated like this by their GPs and most, like me, wait years to get a diagnosis as a result. I am just praying this consultant reads the laughable ancient medical history the registrar dredged up and reaches the same conclusions as me about it clearly not being relevant.
The problem is though, that this is also clearly the way my medical records are being looked at by anyone that sees them. If all my referrals end up being skewed to such an extent, then new doctors have a false impression of me before I've even set foot in their office, eg it makes me suspicious that that's why the locum neuro was so dismissive of me. I need to do something about it, hopefully getting the right diagnosis will be a good first step, but am I right in thinking the only way to get the respect I deserve as a patient is to make them amend all the errors in my notes? If I don't, this is just going to carry on happening.
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General health
Need to access my medical records (long)
moosemama · 03/12/2015 17:11
Thank you for replying Matilda, I really appreciate it.
It's only the GP records that I'm wanting to access at the moment. Other than neuro, both times at the same hospital, there's not much else, other than my maternity notes. I will decide whether or not I need to access the neuro records or anything else once I've read the ones from the GP.
I have a full family and personal medical history typed up ready for my private consult. Everything adds up and points to one particular condition, actually backed up by what the GP found at my referral appointment, but chose to omit from the referral letter.
It's precisely because the DNA's are not relevant to this referral that I can't understand why the registrar felt it necessary to include - and highlight, them in the referral letter. It is relevant that I have been checked and cleared by neuro, as some of the symptoms could be neurological in origin, but I can't think of a single reason they needed to say that I failed to attend follow up, when one wasn't even sent to me. The whole way it's worded makes it clear that the GP thinks it's all in my head, hence dredging up extremely old, irrelevant info re PND 11 years ago. 
I am asking for a full copy of everything in the first meeting and may ask for a meeting with the practice manager when I've done that.
The private referral has become a possibility as my husband now has a job that comes with private healthcare that has a full history disregard. I couldn't do it otherwise. They will cover me to diagnosis, but, given it's a chronic condition, not any long-term treatment or care. Which means I will have to go back to my GPs should ongoing treatment be necessary.
Registrar was extremely pushy when I said I'd rather collect the referral letter than have them fax it over. They wanted me to let them fax it, but my insurance company told me to pick up and take it with me. Now I know why, for some reason the reg wanted to skew the consultants opinion of me before I even set foot in their office. It's baffling.
Thank you scarybiscuit I've read that and the relevant section of ICO.
tribpot I just don't understand why she picked out what she did from my history. She completely missed out everything from my first round of neuro investigations - which came entirely out of the neuro's response to my first MRI, so nothing I requested or pushed for. She felt my symptoms, plus the pattern of brain lesions could potentially mean MS and ordered a swift and thorough work up. The Head GP also put a note on my file at my last appointment (2012) to say I had been privately diagnosed with a pain condition that directly relates/correlates with what I'm being referred for and she also left that out, although I didn't mention at the appointment, but then I didn't mention my PND either. I didn't even ask for it to be added to my notes, the Head GP suggested it. I only went private then (had to fund it myself) because the GP surgery handled the aftermath of an injury so badly and I was left in severe pain and on crutches for 6 months, while they 'forgot' to send my physio referral. One appointment with a private physio was enough for them to know exactly what was wrong and tell me how to improve it and manage the condition long-term.
It seems like she picked out all the irrelevant stuff and ignored everything that might have a bearing on the referral.
The GP/Reg knows I didn't attend because they failed to send an appointment, that I followed up the DNAs to ensure my records were flagged to say I was told not to attend and spoke to the Locum's secretary to ensure an appointment would be forthcoming. She also knows I didn't chase the appointment when it didn't appear, as the Locum basically told me he didn't think the issue was neurological and having had the all clear from neurology twice re anything scary and the tests making me feel much worse, I felt I needed to stop the merry-go-round and just manage my symptoms myself for a while. I explained all that at the appointment. The last communication she had from the Locum, which the GP/Reg had on screen and referred to, was a copy of the one telling me not to attend and I would be seen within 6 weeks in the clinic.
I will definitely makes sure a note is put on my GP results explaining what happened. I do have to take some responsibility for them not knowing. I considered booking a GP appointment to complain at the time, but just couldn't face it - age old problem, too ill to fight for help for being ill. The polar opposite of feeling better so not bothering to go back.
Ridingthegravytrain I hope you're right and they just take me at face value and work from there.
I'm hoping the consultant I'm seeing will be good. He comes highly recommended in the online community for this illness and has pages of 5* reviews on rate my doctor. I did a lot of research to find someone I could get to that was highly regarded and had a good patient/bedside manner - so fingers crossed.
It's been a horrible day. The whole thing made me start doubting myself and I've had to read through all my notes again to remind me why I felt ready enough to pursue this now. My Mum came round, read the letter and said I wasn't imagining the tone of the letter or slant of the history.
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