Accessing Health Care

So, if you aren't all bored with me banging on about this topic yet, here's another call for opinion.

In my quest to secure some proper support to get through my own GPs doors nevermind survive hospital treatment, it seems I have secured a meeting with the Comissioners for Coventry and Warwickshirs Partnership Trust to talk about improving the offer for autistic people. (Currently this sucks, simply because no one can wrap their heads around the issues). I'm not imagininging this is a local problem at all. The problems are likely the same nationwide.

In this meeting, I'll be banging on about my own barriers, of course, but this isn't just my issue, is it? I am no more than just one example, or case study, here.

So, what do you want your local trust to offer you to better access your health care? I'll take all your ideas forward with me to that meeting.

  • It’’s ok - GPs are quite used to people, autistic and neurotypical only mentioning the real reason for the visit, even if you were conscious of it before the visit, on the way out the door.

  • Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

    I completely understand what you mean! I sometimes don’t provide what is apparently relevant information at various appointments because I have not been asked explicitly!

    If only non autistic people could communicate clearly and say what they mean.

  • Yes, particularly as a list of co-morbidities autistic people can have includes in no particular order OCD, dyspraxia, dyscalculia, dyslexia, ADHD, self harm, Tourette’s, addictive personality, opposition defiance etc I am also bipolar.

  • Very good point! There were so many missed signs that GPs or therapists could have picked up on in me, instead of repeatedly prescribing drugs or giving therapy that didn't work.

  • Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

    I think we also need to bear in mind there are many people who are older and possibly undiagnosed and wish to remain that way. What help do they get? I think if there was really good awareness, it could be picked up that "this person is possibly autistic therefore we need to communicate with them in a particular way". I've seen the anxiety caused when vague information is given to someone who doesn't do "vague". 

    Accessing mental health is a big one. There needs to be better screening of autistic individuals (or people on a pathway to / self diagnosed etc) and what makes up their mental health problems. A barrier I've had is in explaining myself to mental health professionals, alexithymia and masking during talking therapies. Even after I have been diagnosed and thought I could advocate for myself I was still masking.

    Another barrier is that, despite being incredibly grateful for our NHS staff, I'm very cynical whenever I have to access healthcare due to past experiences. My back is put up before I've started.

    It's really difficult because there's so many problems with healthcare provision any way,  it feels like asking for too much special treatment. Although it'd probably save a lot of money in the long run.

    Sorry this message is probably more for Dawn rather than a reply to Ann. So in a roundabout way to cut a long story short : we need advocates who can help us communicate ! We need more specialised talking therapies geared towards communicating more effectively with autistics and addressing the needs we have which neurotypical people don't. 

  • It wasn’t so much discrimination as such - the GPs weren’t familiar with the medication my psychiatrist prescribed

  • One of my previous surgeries was a training surgery and although you could only get a single appointment the appointments with GPs in training were twice the length of appointments with the fully qualified GPs

  • This just occurred to me too and I think some practices do it but it would help to be able to book a double appointment when you do actually make it to the gp- so that there is plenty of time to address all issues. 

  • I think it would also help to be able to see the same gp if possible- at my practice there are frequent changes which makes it harder

  • I’ve experienced discrimination due to a diagnosis too- in my case it was anorexia nervosa which was a misdiagnosis but it made me realise how much discrimination there is- i didn’t get physiotherapy referral for ages and whatever issue you have they tend to try and just blame it on diet alone. Not saying that isn’t a factor but it’s a very biased approach. I am so glad they rectified it on my records- recognising it as a misdiagnosis and removing it. 

  • Yes ! This would be good. Because they usually just think it is depression and encourage you to do more things like seeing people or engaging in activities which is probably very counterproductive…

  • Nate97. This has happened to me in the past;  your post will probably appear tomorrow sometime, once it has been read by a Moderator. (I don't think they work on Sundays).

    Ben

  • This is possibly a bipolar issue instead of an autism issue but immediately after diagnosing me as bipolar my local trust promptly closed my case giving me great difficulties in getting repeat prescriptions as at least two of the GPs in my local surgery told me to go back where I had been diagnosed. Fortunately the psychiatrist who diagnosed me gave me one repeat even though I was technically no longer his patient and one of the other GPS in my surgery knew the psychiatrist and was prepared to set up a repeat prescription for me.

  • When I could only book appointments by phone at my surgery I just asked to see the Practice Manager and mentioned the Equality Act to her. She didn’t like it but at least twice told receptionists to book appointments for me. Fortunately my   surgery has now drastically expanded the ways of booking appointments, the main one being an online form which should suit me fine.

  • And recognition of burnout

  • Great point! I fully agree! 

    Also, your point made me think that healthcare professionals should receive autistic led training on autistic experience and the differences between autistic burnout and depression.

  • Training for all medical proffessionals and staff on recognising the signs for undiagnosed autism would be a good start. For example, an individual repeatedly turning up at the surgery struggling to make sense of why they feel the way they do and repeated prescription for antidepressants not helping.....please ask them to look at the obvious to eliminate autism before mis diagnosing. Please ask them to read the nice guidlines x

  • I wrote a lengthy reply but apparently it's been flagged as spam or abuse. I used no swear words and a calm rational tone. I guess criticising the NHS in any way isn't allowed? Anyway, the TLDR was I need to be able to contact a GP by email.

  • Thanks for raising this issue! I agree that it can be very hard to access healthcare. Last year I was getting increasingly burnt-out, loosing a lot of weight due to stress and ibs and my diet having become very limited. I was in a bad shape physically and mentally. It took me 4 months from first reaching out to a gp to actually getting an appointment- i filled out their online form countless times, tried calling etc. Luckily I had good support from my dietitian (though this is privately) and I wasn’t expecting much help from gp for my issues anyways and had mainly wanted to get a blood test and my physical health monitored. I ended up improving on my own. However this situation highlighted to me how inaccessible care is. The online consulting form from my gp was also very confusing. They changed the times it was available but didn’t specify anywhere what times you could fill out and submit the online consulting tool.
    In addition a lot of autism related challenges are very misunderstood by medical professionals- in my case it was my issues with ibs and food- i got very bad advice which made things worse. Plus it took years of misdiagnoses until my dietitian realised I might be autistic.

    In terms of practical suggestions, i think it would really help if gp practices at least had clear explanations of how to reach them and what to expect (not just recorded messages on phone). Also somehow the system must change so that it is not simply those that shout the loudest that get seen first. I’m not good at advocating for myself and it is stressful to reach out, and I don’t exaggerate and often don’t get accross how bad or urgent something is. Not sure how this issue can be addressed but there needs to be a better way of prioritising who gets seen first and it needs to be taken into account that the most vulnerable people might have the hardest time advocating for their needs- they need care most and are probably least likely to get it as they go unnoticed. This is not just for autistic people but for anyone who is vulnerable- thinking of mental health issues too etc. 

  • My GP surgery having an email address would solve 75% of my problems accessing healthcare.

    Honestly, most of what I go to the GP for appointments about could be dealt with better by email. e.g. I last went in to ask for autism referral. It would have been much easier and less stressful for me, and less time-consuming for the GP, if I could have written my thoughts concisely in an email, attached my AQ10 and AQ50, and waited for a response. I wouldn't mind waiting a few weeks for the GP to reply - it's a minimum 6-week wait for an appointment anyway.

    I need to go again to ask for referral to a GIC. Again, it would be much easier if I could put my thoughts in writing and the GP could read it and make a decision based on that. Perhaps they could put a character limit on their email/contact form so people are forced to be concise, if there are concerns about being bombarded with lengthy emails. Otherwise I have to spend several weeks writing a script and then practising it every day until I have memorised it to be sure of not being drawn off course during the appointment.

    I can't use a telephone and have been denied access to some services as a result. When I told the mental health team I couldn't use a phone, they said "it'll mean a much longer wait." When I contacted them several months later it turned out they hadn't bothered putting me on the list at all. I've told my GP surgery multiple times that I can't use a phone and yet they still try to call me or direct me to call them.

    I would love an option to permanently opt out of screening programs too. I have opted out of some through the central NHS system, as in I no longer get invitation letters, but GPs still bring it up every time I attend for a physical health reason and discussing it then takes up the majority of the appointment.

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