"Medical Centre concerns"

I have changed to a different practice in September and would like to outline why I have done so.

I found the  communication between surgery and patients to be appalling, its a non-person centred approach. Either too little, too late or unsolicited in comment.

My questions remain unanswered. Emails received from the practice often did not answer all aspects.

A missed diagnosis, no contact from haematology until I pushed for a response. 

Missed signs of stroke when symptoms were explained to the doctor. Could have been fatal.

Emails from the practice delivered concerns from recent blood tests. which the haematologist and consultant subsequently said were not concerning at all, leading me to initial panic thinking I had liver and kidney issues as result of chemotherapy but actually I am told the lowering of haemoglobin was intentional, it just needs a slight adjustment: it was previously dangerously high, slightly low is ok.  Not a big deal and they are monitoring my bloods , let them do their job. No sign of renal failure according to consultant so why panic me? You should know autistic people are very literal. I was very stressed by this correspondence without explanation.

Non-inclusive solution to my sensitivity to light by suggesting home visit and surgery exclusion. Home visit for bloods then carried out without prior appointment! Especially unnecessary as I had given blood samples the day before as arranged with community bloods. I felt assaulted. My needs have basically been ignored, and I have been treated as someone with low abilities (untrue). I am sensitive and structured.

Its not rocket science to arrange for me to wait outside, me telephoning in on arrival and waiting for call back to say doctor is ready to avoid waiting room entirely. I've previously documented the damage that bright light does to my brain.

Did not feel there was interest in carrying out suggested staff training, putting across that ASD community is near the bottom of the priorities on list.

Dealing with the GP practice  made me feel dismissed and unworthy of even simple answers, to the point of feeling subhuman. I feel angry and disappointed that a place supposedly of care like the practice don’t  care despite helping me get my diagnosis. Its all words, no action. Box ticking. I felt I was treated differently because of my autistic diagnosis.

Emotions are disregarded over convenience/economics.

I felt angry, disregarded, belittled to be repeatedly subjected to conditions the surgery knows aggravate my ND mind as they helped diagnose ASD. I wrote you a detailed letter a year or so ago about the effects and no action was taken, no plan made. If you don't know the importance of my needs re lights its because you don’t listen or read whats given. I’m not looking for tailor made space or I’d accept house calls with notice.

What I am expecting is space designed in for the 20%+patients who are often unable to explain their needs as overstimulation is common and disabling.  I’ve seen the ND community design public events and they always include quiet respite space for recovery/comfort. 

The NHS is supposed to be available to all, to design in accessibility that means not just wheelchair ramps but consideration for those hard of hearing, with dementia etc. Use red guide-lines, large plain font signs and use graphics for the dyslexics. Use colour to designate areas/seating. Getting it right it benefits many. We don’t go to GPs when well, when ill our systems are impacted whether physically, mentally or emotionally.

Better web design could also help: less text, more clear headings - you can layer in detail, you don’t have to put it all on one page. Ask your patients and reception staff to suggest FAQs as I got more advice on what surgery offers from them. Design in to needs not to assumptions from clinical perceptions

Surgery issues: lack of parking nearby

Reception not welcoming, notice boards not very informative, needs to be minimum: 1. about the practice, 2. about nhs ayrshire and arran 3. topical info like jags, seasonal illness 4. patient rights and respect for staff

Map out surgery as its hard to navigate if ill - e.g. label areas 1/2/3, colour differently, have a coloured line to lead to them. better than vaguely waving an arm; have clear exit signs. I have been in the surgery and when overwhelmed could not find my way out.

Have calm children’s areas they can safely play without tripping anyone up

My reflections follow having stroke survivor experience, drug side effect experience and autistic meltdown and frontal lobe non function, its not just one viewpoint. I’ve also worked with folk with dementia, the elderly and dying and with children in outdoor learning and in schools, so my psychology knowledge is extensive.

What I’ve been asking for doesn’t adversely affect other patients, wouldn’t cost the surgery lots of money, isn’t disrespectful to staff or unappreciative of service but for me prevents unnecessary illness, loss of income from incapacity due to recovery time needed. It's about being positive for health which is what I thought you were about but now I doubt and I’m sad. I’ve known some of you 20 years. Most of us were easier ignored than ASD diagnosed so I make these points for all those who cannot voice their discomfort and anguish and would be ignored if they did.