Advocating for myself at the GP

I hope someone has mentioned to you the British Heart Foundation? 

They also offer lots of different types of information and styles of support (the PDF brochures to download are good - or you can get them free by post (I ordered a load of them for one of my relatives when I realised that they we getting nil practical heart health guidance via their GP Practice). 

There is a regular magazine and you can also choose to receive a regular email newsletter - which can be tailored and updated to match your current topics of interest.

www.bhf.org.uk/informationsupport

Oh, wow!! This is so helpful. I’m on my 4th GP practice in 3 years and am yet to get any real help. They’re extremely busy and (I suspect) want to treat a (single) symptom rather than the cause or holistically me as a patient. Hospitals are stretched, too. I was admitted with heart problems then sent home because I was waiting for treatment and was in a long queue. I had a heart attack, at home on my own 2 days later . I’ve tried a list and the GP response was ‘pick the one that’s worrying you the most’

I've reread my post and I'm not sure it's that helpful!   Sorry, I should have waited before clicking reply!    Sometimes if I'm wrestling with a complicated topic I mind map it first to try to think about it more clearly.    

I think writing it down is helpful, but as has already been mentioned, edit what you've written before you go so it's really concise or just a few words, and if necessary write it out neatly again.   Putting things in bullet points can be helpful too.   Also, as its only five minutes or so, I try to say a maximum of 3 or 4 important points, eg (1) symptom x and y  are troubling, (2) are symptom x and y connected with something, (3) what options would the Dr suggest

If you've got an autism card you could take that too.   

Yep, I do have an autism diagnosis. Another thing I had to advocate to get to set my mind at ease. (TDLR: The canon even of "why and how I'm a different to others".)

I've actually been getting some blood tests and stuff to build my case. Though the down side to my situation is that the conditions tend share a few symptoms so, it can either be both or one of them.

I'm ok with being wrong it's a part of life and I can learn from it.

Thanks the feedback and lending me an ear 

In case you have not heard of them before: "Verity" is a UK charity and self help group run for and by women with PCOS.  

Do you have an autism diagnosis? You do talk about quite a few autustic traits and if you are diagnosed then it does sound like your GP is unable to see past issues of the mind as being most likely.

Since you have it as a special interest I would gather what info you can on the diagnosis you think is correct and start gathering evidence that backs this up rather than it being a mental health one.

Once you have gathered this, present it to your GP and ask him to reconsider. Perhaps point out that you appreciate he has little time so you gathered the information for him - sometimes a bit of empathy can get results.

If you can create a one page analysis showing the symptoms of the mental health situation and the hormone situation - have them side by side and show where there is a gap in the mental health criteria but complete coverage in the hormone criteria.

I hope that makes sense - all it should need is a thyroid test I suspect from what you describe.

One thing to be prepared for is that you could be wrong. It can be hard to avoid confirmational bias in such a quest but try to stick to the facts rigidly to come to your conclusion.

Good luck

Thanks for the info 

It's basically a hormone issue (PCOS) I've been dealing with for all my life that can mimic mental health issues. (I know yikes.)

And I only just found out that it can't just be that without thorough testing to rule out other hormone issues. So, like thyroid disorders as an example. (Surprise, surprise. None of the specialists between Spain and Scotland checked if my thyroid was working optimally. Which can also look like anxiety, depression and other mental issues.)

All this has practically become a hyperfixation for me because my last attempts to address my issues ended up in vain. And something about it didn't sit right with me. 

I didn't add those details earlier because I don't know how much I can say before the mods deem it too much personal info. 

Hi Glizbeth.

In England and Wales the NHS has started rolling out to appropriate staff two tiers of the UK Government's preferred and recommended Autism awareness training called the Oliver McGowan Training (I had been about to suggest asking if someone in your GP Practice had completed the Oliver McGowan training ...until I realised you are in Scotland)..

What is the current situation in Scotland? - here is the "long story" (please skip to the end of this reply for 4 "short story" interim practical suggestions ... because I don't think any Autistic patient loves personally delivering the basic Autism training to medical professionals in the style of "Groundhog Day"!):

I understand the situation is slightly different in Scotland; where a similar initiative is being planned for rollout as per the Scottish Government's "Learning Disabilities, Autism and Neurodivergence Bill: consultation (2023).

https://www.gov.scot/publications/learning-disabilities-autism-neurodivergence-bill-consultation/pages/9/

The name of the Bill is a bit wordy; so more recently it has become more regularly referred to as the "LDAN Bill".  A good move!

Unfortunately, the progress became subject to a delay decided by the Scottish Government.

By November 2024: the Equalities, Human Rights and Civil Justice Committee agreed to hear various sources of evidence following the Scottish Government’s decision to delay the introduction of the LDAN Bill and the committee produced an update paper on the situation - as the committee summarised:

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://www.parliament.scot/~/media/committ/9405/Paper-1--SPICe-briefing&ved=2ahUKEwjQy4yP3aCPAxW0UEEAHcGRN24QFnoECB0QAQ&usg=AOvVaw1ZQ2TafBhSfH-gMo_sTJbz

Unfortunately, the update November 2024 was still quoting mandatory Autism training in Scotland in aspirational terms: "Mandatory Training in the Public Sector - there needs to be greater awareness, understanding, and training on learning disabilities and neurodivergence."

As at April 2025; the Scottish Parliament was still dolefully observing: "...the Parliament notes its disappointment at reports that the promised Learning Disability, Autism and Neurodivergence Bill was not announced in the most recent Programme for Government ...".

https://www.scottishparliament.tv/meeting/members-business-s6m-16644-daniel-johnson-learning-disability-autism-and-neurodivergence-bill-april-1-2025

In June 2025 it was announced by the Scottish Parliament that; "The Health, Social Care and Sport Committee is launching an inquiry into treatment pathways and support for Attention Deficit and Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD).". (For which the call for views closed on 18 August 2025). 

https://www.parliament.scot/about/news/news-listing/committee-seeks-views-on-adhd-and-autism

So ...sorry to say; unfortunately, that all sounds rather: "hurry up and wait"!

In the meantime, I have 4 "short story" suggestions / observations:

1) Courtesy of Autistic Doctors International; I wondered if you could try asking your GP Practice for reasonable adjustments in support of your Autism in the style of the SPACE framework ("Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings).

S - Sensory

P - Predictability

A - Acceptance

C - Communication

E - Empathy

https://rightdecisions.scot.nhs.uk/autism-meeting-the-needs-of-autistic-people-and-people-with-other-types-of-neurodivergence/autism/autistic-space-framework/

Or (this 1 page image - reflects the study of the experiences of UK Autistic medical Students - but does include the SPACE image in colour):

https://www.researchgate.net/figure/Autistic-SPACE-a-novel-framework-for-meeting-the-needs-of-autistic-people-in-healthcare_fig1_370580268

2) I believe; NHS Scotland does not currently have a national "Neurodivergent Passport" or "Neuro-Inclusion Passport".

However, you could try making use of the National Autistic Society "My Health Passport" which is designed to communicate an Autistic patient's needs when navigating healthcare settings like a GP Practice, or when attending an Hospital Clinic appointment, or A&E:

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

The above health passport can also helpfully support your self-advocacy in difficult situations; where maybe through overwhelm / frustration / physical health barrier / mental health situation: you might be finding it extra difficult (or temporarily impossible) to convey your medical history and support needs to healthcare professionals.

3) Unfortunately, I understand that NHS Scotland doesn't have a direct national "autism patient record flag" like England's Reasonable Adjustment Flag; instead, it relies on local clinical systems and resources like "health passports" to manage these adjustments. Patients are encouraged to inform their care team of their needs, which are then documented in their local health records, often supported by a personal "hospital passport" that outlines communication preferences, environmental needs, and other support requirements for staff to follow.

4) You may wish to consider the merits of wearing a Sunflower Hidden Disabilities Lanyard to appointments in healthcare settings - this can help all NHS staff to be supportive - not just clinicians.

Sometimes, you can get one for free from larger branches of supermarkets like Sainsbury's.  Otherwise, here is the official website with a wider range of products - which is helpful to know in case you are a person who doesn't tolerate well; things touching the back of your neck):

hdsunflower.com/.../lanyard-packs.html

Best wishes.

Glizbeth said:

It's kind of an ongoing issue since I've always felt like I wasn't listened to and just fobbed off

You are on the right track with writing stuff down, and this can work well if you can keep the notes concise and directly to the point as the doctor has only a few minutes to meet with you in the session and if you have a 10 page essay then they won't have time to read it, consider it and offer a response.

Glizbeth said:

I've tried writing stuff down for my GP and it ended in getting me referred to my local mental health services.

If you don't mind me asking, what were you asking about? If it was a sore knee then this is a strange response but if it is a mental health question/issue then we may be able to advise how to word it more effectively.

Don't answer if you don't feel comfortable sharing the general details.

I find that writing out the essentials of what I need to talk about with a one sentence intro, bullet points to explain it and a suggestion to what I think the solution should be then asking their opinion gets the results I wanted. You can use it as a prompt of pass it to them (probably add a line saying "I have trouble talking face to face so have written out my info, thank you for your understanding".

It may be best to print this if you have a computer / printer at home, otherwise use your best handwriting,

Yep, I have a similar issues. I find writing down what I want to ask helps that I want and then looking down at my notepad and taking notes on what they say. This helps me ask all I need to and write down my questions as I'm asked. I'm not sure if that is what you mean by writing down for your GP? but i think it is different cos my GP does not see what is written on my notebook, it's just cues and notes to help me not get lost when I am trying to say something. I think also reminding them of your autism. I beleive there is an autism passport on here to help your doc get your specific needs. Perhaps that will help? I can't use this as I am not yet diagnosed

I must admit it is very hard in the 10mins you get after you've waited 7 weeks or so for an appointment. I have one coming up next week. I think it also helps to sort of be your own GP, in other words to have some idea of what the issue is and what you want done eg I think I'm anemic ... what the symptoms you have are... please do a blood test  and stay open to it being something else. Insist on a follow up appointment if it's something that needs that. 

My practice has an online triage system before you can even have an appointment and while this is very annoying to fill out, it does give you and oportunity to write your symptoms and what you want before the appointment. If you have that it may help to use it.