Frustrating NHS Rejection and Argumentative GP

[Jigglypuff]

Hi guys,

Last year I had my ADHD diagnosis as an adult, after being misdiagnosed in 2015 with Bipolar type 2. I had an awful eight years on anti depressants and mania and finally realised myself that something wasn't right.
Having the adhd diagnosis has changed my life, I'm so much happier medicated and I feel like I can manage with that part of me.

Before I even thought about ADHD, I was complaining to my friend about my struggles during figure skating, and she (as a doctor) said "Have you ever heard of Dyspraxia?" - I hadn't.

A few years later my adhd clinician wrote that I exhibit strong symptoms of Dyspraxia and encouraged me to seek a diagnosis of that too.

So... I did. I requested it last year. I'm in the West Midlands and I've spotted another member complaining already about our lack of help. I was denied three times by my local hospital, and TRAQS fought bloody hard back for me, but to no luck. It came back to my GP (who doesn't do shared care BTW, I directly get my tablets from the NHS ADHD service that diagnosed me) who was meant to contact me and of course they didn't.

I finally called up last week to discuss and got seen that day. As soon as I mentioned it my GP was hostile, demanding to know why I'd even want a diagnosis. I had a full email from Dyspraxia UK guiding me on seeking NHS help with something called an ICB fund I believe, to which my GP laughed and said "That's for serious cancer patients not for you".
She then said that there's nothing she can do, kept talking down at me, why why why etc. Constantly demanding to know and in the end I broke down into tears and explained the worst of my symptoms.

I fall over weekly. I have permanent tissue damage to both of my legs. I have panic attacks on stairs and in public places. I broke my new phone within 24 hours so I have to pay for accidental cover on everything I own. It's horrible. I'm 34 and just passed my driving test two weeks ago (first time, I'm shocked too).
Driving alone is scary and I have to park to ensure I can get back in my car safely as I don't have a blue badge. I am applying for one though but expecting a no because I don't have a diagnosis.

The GP ended up apologising and said if I could find any hospital in the UK that would take me on she would fight for a referral. But why she had to degrade me so much to get to that point I don't know.

She ended it on "Oh BTW I have ADHD and a little bit of dyspraxia as well but not as bad as you of course" - so thanks for being empathetic??

Honestly, I'm feeling so worn out with this already. I want a diagnosis because I want the validation of something I've severely struggled with all my life. As a kid I was so clumsy and my mum just never even knew what dyspraxia was, it's not her fault.

Dyspraxia doesn't end when you become an adult?

I'm so frustrated and down. I don't think I can afford a private one either and even then if it's not recognised by the NHS what's the point? I have had physio multiple times now, thankfully they see me fairly quickly but I want a diagnosis on my records.

Sorry for the vent, I'm so down about it all.

If anyone knows anywhere in the UK that would consider external referral, or if you think I should just save for a private one, let me know.

The NHS is already lacking for ND support but this is actually insanely poorly treated.

Thanks guys, have a good day

[Tom fod]

Hi

Sorry not to be welcoming you in better circumstances.

I guess you could make a formal complaint against your GP though it does sound like she softened and appears more on your side after you broke down. You could also write to your NHS Trust's ICB and/or complain to your MP.

Regrettably the NHS is just not geared up to support dyspraxia and identification for adults so often seems to fall into a void between clinical (where what there is, is for the most part in the paediatric sphere.) and special educational provision.

For adults the diagnostic pathway is just not there/provisioned. Many people are trapped in a limbo where their self-declared /suspected Dyspraxia isn't formally acknowledged or even supported.

Right To Choose seems to extend to ASC/ADHD only. I do wonder if your GP practice/ NHS Trust may only be using their ICB fund to fast track referrals for those with suspected cancer symptoms?

The Blue Badge scheme is supposed to determine eligibility based on need rather than the conditions listed on your patient record. I'd definitely reach out to an advocacy service who can help you convey how and why a Blue Badge would help you and/or appeal any adverse outcome of your current application.

Many dyspraxics who have fought the system can all too easily forget that everyone's experience of Dyspraxia is relative to them as an individual and the whole toxic positivity thing can regrettably rear its head.

Dyspraxia is lifelong and people are sadly not getting the recognition and necessary support to be able to thrive. Societal attitudes to disability and difference certainly don't help with wider public understanding or acceptance.

I hope venting has helped as I'm conscious that my thoughts don't really help you to achieve the outcome you so need.

[tom24680]

Look if you need help with hand and foot skills to improve them as I do you need to get to your doctor and ask for an occupational therapist assessment. I had advice from the lady who assessed me for DSA and I went through my doctor. I had a referral quite quickly and an occ therapist's test showed me I need to do some exercises with my hands to improve my manual dexterity. In for a penny in for a pound and it can't hurt. I've started them and I wont know if they are any good until after about 3 months but I found a solution and my confidence is so much better going for a DSA assessment for uni and taking up the recommendations my specialist assessor said I should do so dont sit back and wallow but be proactive. There's lot of help out there go for it. No-one is going to help you unless you are prepared to help yourself. No good arguing with doctors either as it gets you no where. If your doctor wont refer, I was told you can ask for a second opinion with another doctor so be proactive - dont feel sorry for yourself BUT ACT.