"Stigma and discrimination is alive and kicking"

Stigma and discrimination is alive and kicking in health & mental health care, but then we knew that already.

After another disappointing and frustrating experience with mental health professionals I felt I had to share this, although this isn't full detail.

After a very brief discussion with my GP about the possibility of inattentive ADHD and me wanting to know if we could discuss this further, a referral was made to psychiatry for an assessment, without my knowledge. I had mentioned to my GP that I have Dyslexia and Dyspraxia but found out later that this wasn’t included in my referral.

I received an envelope in the post with a pile of forms in them. No letter, contact details or guidance or any kind of note. After around 2 weeks of calling round various numbers I managed to get the correct contact number for the address stamped on the back of the envelope and got through to somebody on the reception desk of the local mental health team. I asked about the lack of letter and guidance, said that I didn’t understand all of the questions or statements on the forms and was told “I think you’re just supposed to have a go at them and send them back”

I did this, but made sure to add a note saying that I have Dyslexia and Dyspraxia and needed help with forms including the option to have electronic copies that I could complete on a computer. (i.e. requested reasonable adjustments.)

I next received a letter from an Associate in Psychiatry telling me that ADHD was highly unlikely but offering me a 30-minute call to discuss my support needs. So I sent back a letter explaining that I regretted sending back the forms when I did, I didn’t know they were going to be used as the sole basis for making a decision about this and that I needed the opportunity to request reasonable adjustments due to the Dyslexia.

On that 30-minute call I then had to explain to the associate what a reasonable adjustment is.

In hindsight, I don’t think any of this would have made a difference as I believe this associate had already made up their mind not to consider any Neurodivergent Disorders (NDD).

I was told that it’s highly unlikely I would have ADHD as people with ADHD don’t make it through college and don’t attain management positions.

I was then told in the same conversation that in fact everybody has ADHD, but not everybody needs medicating.

I was told that ADHD would not be explored as Complex PTSD or Emotionally Unstable Personality Disorder (EUPD) was more likely.

I tried to refer to the All-Party Parliamentary Group for Dyslexia's paper "The Human Cost of Dyslexia" but again this was disregarded.

This is despite the fact the guidance from the Royal College of Psychiatrists states particular attention should be paid to existing diagnosis of NDD before or during an assessment for personality disorder due to the cross over in symptoms.

After a further 2-hour telephone assessment which I wasn’t expecting or prepared for (I’d been sent a letter telling me the appointment was with somebody completely different and when I called to confirm how long the apt would be for, I was told 30 minutes) I was told that my difficulties are more likely to be related to EUPD but they didn’t want to give me a formal diagnosis acknowledging that I could expect to be discriminated against in other health services if I had that diagnosis on my record.

Working in and around mental health and being surrounded by colleagues who are trained in various fields, everybody I’ve told this too who knows me well is completely shocked and confused.

So apart from the stigmatising beliefs about ADHD straight out of the 70’s, openly acknowledging the existence of discrimination towards people with diagnosed mental health disorders in the health care system, failure to follow guidance from NICE and the Royal College of Psychiatrists and the actual discrimination (Failure to Make Reasonable Adjustments; Equality Act 2010) I’m just heartbroken that this is even happening as I know I won’t be the only person.

If I’d received a letter explaining I’ve been declined an assessment as the NHS have to prioritise the most severe presentations and I don’t appear to meet the criteria for this, that would have been something completely different. I understand how long the waiting times are. But to have a qualified professional telling people that 'people with ADHD don’t make it through college or get management jobs' and then contradicting this by saying 'everybody has ADHD' is really very concerning.

After asking my GP if the NHS will accept a private diagnosis, I’ve borrowed some money from my family to help me seek out a private specialist in NDD, they spent time explaining the forms to me to make sure I answered them properly and in total spent over 5 hours with me across 3 consultations. I’ve since been diagnosed with combined type ADHD and co-occurring EUPD has been ruled out.

We’ve also identified Neurodiversity throughout my family with at least 2 other of my relatives now exploring a diagnosis. Awareness about neurodiversity is on the rise, but we need to see this embedded into practice of all mental health services. This diagnosis has saved my job, my career (I'm already on my 3rd!) and my life - how many others are missing out?

I know that NHS Lanarkshire have signed the Stigma Free Lanarkshire pledge, promising to tackle mental health stigma and discrimination, that senior leaders attend events talking about how terrible it is and how to put champions in place. But it doesn’t mean anything if this doesn’t filter down to the settings where the stigmatising attitudes and discrimination is actually taking place.

It’s time to put energy into addressing this. There are plenty of organisations out there that are wanting to help and support.