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Diagnosis frustration

Lellynelly

Just need to sound off really. Got referred by my doctor A YEAR AGO, filled in the questionnaires, got put on the waiting list for a diagnostic assessment but have been told I could be waiting AT LEAST another year. (Not enough resources apparently)

So I have finally decided to go private. I found somewhere local that claims to be able to complete the process within a month. Great I thought.

SO I contact them. They explain that they send diagnostic tools (I assume questionnaires) then I have a 2-3 hour face to face and they will make a diagnosis at the end of that. I tell them yes. They then say I need a referral letter from my GP, and a brief history of anything medical that is relevant. I tell them I already got referred and am on the waiting list so they said that a copy of that letter would be fine. Please can I ask my GP to email or post it to them. simple....................NOT....

SO I phone my GP and they tell me they can't. There is no-one available to discuss the possibility of me having access to my records, and they can't just give me a copy of the letter. They said that how it is done is that the organisation who are doing the assessment must contact the surgery themselves and ask for it, then they can tell the doctor exactly what they want.

SO I contact the private company again and they say no it's not up to them to contact the GP it's up to the GP to refer me!

SO I contact the GP again and they say I'll have to talk to the doctor direct and discuss it with them. I then try to make an appointment but they are booked up for the next THREE WEEKS. 

I am SO frustrated. Surely it should be simple for them just to print off a letter that is already on my notes and give it to me!

WHY OH WHY is the diagnostic process SO LONG! 2-3 years is completely unacceptable! 

  • If it helps I also swapped from an NHS waiting list to a private referral. I asked my GP to do this over the phone - maybe you could book a phone call for it? It is something you have already been referred for you are essentially transferring it to a private company so it's not a new issue. 

    I hope you manage to get a referral sorted out soon 

  • The Psych doing my private diagnosis wrote a letter for me to sign to give to my GP asking for a summary of health issues.  He sent a brief summary and a copy the the referral letter to the NHS service0  I did offer to pay but there was no charge. 

    I also have web access (SystmOnline) at my surgery to all my records, including letters to and from the GP about me - very handy.  I keep a nice Excel spreadsheet showing all my blood test results going back >10 years - it lets me spot any anomolies and also see the effectiveness of Cholesterol drugs as each is introduced. 

  • in reply to nexus9

    Your GP notes do tend to collate a lot of information from different areas, and the practice holds copies of letters from various different services.

    It’s certainly difficult to decide how far to delve into things, particularly when it is from a while ago. Of course, this is something only you can decide and that’s difficult to do when you don’t know what you might get.

    In my case, I had to get copies of some of my medical records for a legal case, but I was not prepared for some of the information contained within them, which I found really quite distressing. For that reason I wouldn’t choose to see any of my older health records, but I do ask to see everything that is recorded about me going forwards so that I know it is accurate.

  • in reply to NAS36609

    The notes I glimpsed were on my GP.medical notes. I am not sure if they were written by the school psychologist or by the psychiatrist I was referred to - by the headmistress - at a Child Guidance clinic. I have no idea what these evolved into. 

    I can imagine it could be painful reading. I am not totally sure if it would not be better just to leave the whole thing alone, it certainly would have been better left alone in the 90's when questions were being asked about another family member (and this is a small world and I hope there is no one posting here that might know me too, but there might be). It is partly grief, the stupid misconceptions that probably made things worse within my family. I lost my Dad two years ago and it could well be coming closer to End Game with mother. 

  • in reply to nexus9

    You’re still entitled to a copy of your health records, though it can cost more than £10 depending upon the amount of records you request e.g. they can charge £10 for each place you have to request them from, such as hospital, GP practice, dentist etc.

    Do be warned though, you may be horrified by some of the inaccuracies and misrepresentations that your medical records contain (or perhaps I was just unlucky to find serious errors in each of my medical records that came from from three different sources...)

  • in reply to Deepthought

    Wow! I did not know you could do this! But I have lived abroad for over 20 years now, save for a disastrous 9-month interlude after my first two years back there. I wonder if I could still get these with the ten-pound fee? 

    I read inadvertently on a trip to the doctor in 1991 what was being written about my difficulties as a child. I would like to know whether what it was called then would have been recognised as a spectrum thing now.

  • Could you possibly write to the GP requesting they refer you to the relevant service (I have made requests of my GP before in letters when I couldn’t get an appointment and this has been accepted)?

    I feel for you - the diagnostic process is so long. For me personally (and I was a child at the time), it took 3 years from the psychologist saying she thought I was autistic to me having the diagnosis. In some places I know the wait times are currently as long as 48 months, which is just completely unacceptable. I hope you get your diagnosis soon.