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Rant: NHS referral bounced back AND data breach!

awkwardsomeone

FIRST I got an email showing the autism service I had been referred to for diagnosis have not even moved forward at all after all these months due to my doctor apparently not filling in the form correctly

Quote from email below:

"Unfortunately, we are not able to accept this referral, at this time, as there was not enough information on the referral form that details behaviours or symptoms or significant impairment which would suggest a diagnosis of ASD/ADHD.

As stated on our referral form, requests for assessment must include all of the below: • Presenting difficulties suggestive of ASD/ADHD • Resultant impairments • Confirmation that at least some of the symptoms were present in childhood/adolescence. We advise that you re-refer with this essential information and ensure the referral form is completed in full, with relevant clinical updates relating to the patient's wellbeing, mental state and risk, with reference to the above sections."

Can I find out what my GP did exactly? Can I request to see the referral form as it was sent? I only ever get phone appointments with them and I find it really difficult to get anything I need from my GP. I need to insist on face to face and take an advocate I think. I am articulate in writing but verbal conversation especially over the phone leaves me feeling unheard and depressed.

THEN I got the same email but intended for someone else. Exact same template but for a different patient with different GP.  

What does this mean? Is there a widespread issue with how GPs are referring people if they seem to be telling multiple patients the same thing? Are they just trying to chuck people off their waiting list en mass? I am going to complain so hopefully that person will be informed and can take action about their data being leaked.

I'm re-considering even getting a diagnosis. I don't see any concrete help I could access with a diagnosis anyway. I feel stressed and trapped by all the things I am supposed to do as an adult that seem to be so easy for everyone. I attempt to help myself but then it's all just more bureaucracy, barriers and incompetence that I don't feel able to deal with. I wish I had someone to take this all on and fight for me. I am so tired of barely functioning.

  • Hi,. I’m sorry this has happened to you. 

    maybe you should get yourself a advocate,. This is what I done. She was amazing. 

    I also had an email meant for somebody else, but mine was their complete diagnoses email with absolutely everything on. I was asked to delete it. 

  • Contact the Data Protection Officer at the NHS to report a data breach.  If they do not act on it, contact the Information Commissioner's Office to report it - details are on their web site. Hopefully once senior management is involved the consultant will also review your case and talk to your GP.

  • An advocate is an excellent idea.  It's free and they can take on a lot for you or go with you to address these things.  Mind will be able to tell you which agency deals with your areas.

    I should say the data breach ought to be the subject of a complaint for the sake of the other patient, who may not even know that you have received an e-mail intended for them.  That is a serious concern.

    And yes, you can see the GP's paper work.  Under GDPR, all you have to do is ask the surgery for anything and everything that pertains to your request for an autism assessment.  If the GP has just innocently missed something you ought to be able to spot it and ask him or her to correct and re-refer.

    I don't think it is acceptable that they waited so long to tell you there was a problem.  We all understand that waiting lists for assessments are overloaded, but to take any more than a week or so to look at your paperwork and put it in the queue is not acceptable.  To my mind, if your GP can give them what they need now, they should pop you in the queue where you would have been had it all been in order in the first place.  They shouldn't extend your wait due to admin error.  That's not fair.

    I totally get what you mean about being able to express these things in writing but not verbally and then not feeling listened to.  I did ALL of this in writing, actually.  I never spoke to my GP and there is no real need to, I think.  I'd just write to your GP asking that he re-examine the paperwork and fill in the blanks and ask for copies under GDPR.

  • awkwardsomeone said:
    Can I find out what my GP did exactly? Can I request to see the referral form as it was sent?

    Yes they are legally obliged to give you this (assuming they kept a copy) if you make a subject access request. You may be able to use the NHS app to see the data without a subject access request but they still have to show it to you even if you can't get to it through the app.

    awkwardsomeone said:
    THEN I got the same email but intended for someone else. Exact same template but for a different patient with different GP.  

    Because the content of the letter is what you were expecting there are two obvious possibilities. They sent you the leter you were meant to get but accidentally put some one elses name on it. 2 They sent you a letter meant for some one else who also has your medical issues. If the latter that's a data protection breach. You can complain to the ICO.

  • probably the only way now is private , but first consider whether a diagnosis will help you

  • Definitely complain about the email with someone else’s name on. That is a serious breach of confidentiality and shouldn’t have happened. Is there a way you can contact your GP via email or e-consult to ask what was included on the referral? One of my jobs is triaging cardiology referrals there are a lot of incomplete forms (some with no information on at all except the patient name and number) and quite a few referred for the wrong test, some are even meant for different specialties so I don’t think they’re getting rid of people for the sake of it. They can’t do their job without a minimum dataset at the point of referral