Hello everyone, I am new here and I'm not sure how to help myself anymore...
I am having a very difficult time coping at work and where I live at the moment. I finally asked my GP for help and he referred me to the local mental health team and a counselling place. This really helped me feel like things could get better as I've been feeling trapped and isolated.
Unfortunately I had forgotten that before being diagnosed with autism, I had received a diagnosis of Borderline Personality Disorder, and this meant the referral was automatically rejected without them having to see me. I had thought that my autism diagnosis replaced the personality disorder, as it's a diagnosis I always felt was incorrect anyway, but it seems that not only has it stuck but it means I can't get the support I desperately need right now. It feels unfair because its been a few years since it all happened and I've always maintained that the personality disorder was wrong. I have been shown how I meet the criteria for aspergers, but nobody has ever been able to tell me how I meet the criteria for bpd. It's made me more depressed and more withdrawn and I'm stuck.
Does anybody know whether it's possible for the GP to review/change an incorrect diagnosis, or is this just the way it will have to be? I'm not sure how else I can get mental health support as I can't afford private counselling!
Thank you and sorry this post is long!
Best to contact your GP, I'd say. Do you have the original report with your BPD diagnosis?
Thanks for responding. No, I've never seen a report, they just starting saying it. I'm not even sure when the diagnosis was made! I only have an autism report. I think I will ask my GP about if it's possible to change it.
I don’t think your GP could change the diagnosis because it is not down to a GP to diagnose mental health problems. I also say this because I had certain opinions given by a psychiatrist once which I and my GP disagreed with, so I sent the psychiatrist a letter asking for a justification of his diagnosis (i.e. what the diagnostic criteria was, how I met this, how he assessed if I met this etc.) but he refused to do this. I then made a formal complaint because I didn’t want his mistaken comments on my medical record, but the conclusion of that was simply that it was his clinical opinion after assessing me and therefore it wouldn’t be changed or removed from my records, even if his opinion was never justified in any way.
You can however request to see a different psychiatrist for a second opinion. They don’t have to grant this request but you could try. You could do so on the basis that you were diagnosed with BPD, but now you have been diagnosed with ASD you want a professional opinion as to whether you actually have BPD taking into account the traits of ASD. You can also explain that you refute the BPD diagnosis. Of course, you may not get the answer you want from a second opinion, so there is a risk in requesting one.
As for your referral being rejected, did they explicitly state that this is because you have a diagnosis of BPD? (You can ask your GP if you’re not sure). It just seems a strange reason to me given that mental health teams in my area do see people with BPD. Also, when your referral was rejected was a different service recommended as more appropriate? You say you are having difficulties coping at work and where you live, but you don’t mention a mental health problem per se, so on what basis did your GP refer you to a local mental health team? I don’t mean this in the sense that you don’t need to see them, or that you don’t have mental health difficulties, but it’s really important to know what reasons were given for your referral because mental health teams usually have strict criteria for accepting referrals and the threshold of difficulties is often very high. Read here for example:
Unless you are suffering significant mental health difficulties, some teams won’t entertain the idea of seeing you and they often shove things like ‘work issues’ to adult social care services. That being said, you should be able to get counselling services more easily as these usually fall under primary care services, but you would have to check what the process is in your particular area.
I’m sorry to seem like the bringer of gloom with my post, but sadly I know through my own experiences that mental health services are very difficult to get any tangible help from. (You can read some of my own and others’ experiences if you’re interested in knowing a bit more if you click on the ‘related’ threads to the right hand side of this thread).
My best advice is to learn how the system in your area works, ask lots of questions, keep pushing for the help you need, complain about inadequate care where necessary and accept any support you can get with all of this (advocacy services for example). Also, for your work issues, make sure that you request the reasonable adjustments you need to help you cope and that you know your legal rights in this regard, and if the environment really doesn’t suit then try to get a different job that better fits your needs (it’s hard, I know, but if you manage it then it can be really beneficial).
I wish you well, and sorry for such a long post!
Hi, thanks for your reply and advice.
Yes, the GP called me after they made the decision and said the mental health team and counselling service had looked at their records and decided to reject the referrals and both used BPD as a reason not to see me. I think the counselling service go from the advice of the mental health team, as I've self referred to them before and they mentioned they spoke with the mental health team before deciding to reject the referral. I guess different areas will have different rules. My support worker thought it was unfair too though. She spoke to the GP after I did and then said they shouldn't be using it as a reason because because people with BPD and ASD can have mental health problems.
It was a routine referral to the assessment team, so my GP was just asking them to see me so they could decide what might be helpful. The mental health team told my GP I should engage with Mind, which I have been doing for a long time any way. My GP told them this when they spoke to him to reject the referral.
I had been referred because I am becoming very depressed due to work/finances/life and I'm withdrawing and finding it even more difficult to interact.
I wouldn't have minded them saying no if they just thought my symptoms weren't severe enough. I work in the NHS so I completely understand they have to do that. Rejecting me on the basis of BPD just really alarmed me, especially as they haven't seen me for a long time and I have since received a different diagnosis. Just before I was discharged the previous time I told the psychiatrist I thought I had autism, not BPD, and she agreed with me!
With work, it's definitely the environment I find the most difficult. I've been applying for different jobs for months with no success. But that's just something I have to keep trying with.
Thanks again for you help!
In case you hadn't seen it, NAS36609 also started a related thread here:http://community.autism.org.uk/f/health-and-wellbeing/12559/any-experience-with-eupd
Again, I believe BPD or EUPD are common misdiagnoses of autistic people, particularly women, and it's happened to a friend of mine, who I don't think has any kind of 'personality disorder' at all. It's almost like a diagnosis of BPD or EUPD on someone's notes is an instruction to mental health people to disregard anything the patient is saying.
Recently, a council commissioner in our area consulted autistic people about useful things a post-autism-diagnosis service could do, and several very articulate people explained the importance of reviewing previous diagnoses such as PDs in the light of the new information. This doesn't seem to be done systematically, and so far as I can see isn't in the current NICE clinical guideline 142.
One additional problem is even after someone, say a psychiatrist, has noted that your diagnosis is X, not Y, Y can still be retained on your notes as a heading up to that point, and so other clinicians may read that and jump to conclusions. I think this is still the case with me. I had a good GP who showed me some of my notes without having to make a formal subject access request, and in order to get a previous diagnosis overturned, sent me to a psychiatrist, who while agreeing that my previous diagnosis was incorrect and writing a letter largely to the effect, the process hasn't actually triggered the correction to historical notes. Correcting data is presumably a requirement of GDPR as well.
So although the GP may feel they need to defer to a consultant, I do think asking the GP and explaining the problem is a good first port-of-call and way to navigate through the system, ultimately to get your needs met. I'd also echo the suggestion of contacting advocacy services. The GP may also have a list of self-referral counselling services, which could bypass the MHT.
Oh, and searching the web turned up this, which may be of interest:https://www.autismresearchtrust.org/News/borderline-personality-disorder-or-autism
Sorry for long reply - a lot longer than your original post.
I hadn't seen that thread, so thank you for linking me in. It's reassuring to know I'm not alone with this, especially as I am female so I can completely relate. It's just a shame that it then becomes tricky when I ask for support. It seems unfair for people who do have EUPD/BPD and definitely not ASD as they do not have an alternative diagnosis and are just not able to access support.
I wasn't familiar with the alternative name of EUPD, but for me that name reflects how irrelevant it is to me. I do not feel that I am emotionally unstable, but if I am overwhelmed and have a lot to process I will have a meltdown. One of the most disappointing things is that it feels as though psychiatrists have an view that I am lying or trying to manipulate them when I have always been quite proud of my honesty, even when it gets me into difficulty sometimes, and I don't think I would know how to manipulate somebody, and if I tried I don't think I could keep it up! You are correct that it seems to be a valid reason for mental health professionals to disregard everything.
I will definitely speak to my GP about it. He has been fantastic, understands my ASD and works with me and my support worker. I am seeing my autism worker on Wednesday so I will speak to her too, she might have encountered it before. The support worker I was with last week emailed her so she's likely to know a bit about what has happened.
Thank you for your post, and apologies for the equally long reply! I am not the most efficient writer! It was very helpful and reassuring that it is a problem with females and that there are places and people I can go to. I will call my GP tomorrow
NAS37595 said:I wouldn't have minded them saying no if they just thought my symptoms weren't severe enough. I work in the NHS so I completely understand they have to do that. Rejecting me on the basis of BPD just really alarmed me, especially as they haven't seen me for a long time and I have since received a different diagnosis. Just before I was discharged the previous time I told the psychiatrist I thought I had autism, not BPD, and she agreed with me!
I can totally understand where you’re coming from here - having decisions based on something you don’t believe you have is very frustrating and upsetting. Perhaps you should raise what you have said here exactly with the mental health team and ask for a response on the point. If you’re not comfortable contacting them directly then ask your GP to do this for you (I’m pleased to hear that you have a supportive GP).
As you have seen, you’re not alone in your difficulties in this area, so come here for understanding/advice/to vent whenever you need to and best of luck getting the help you need.