There is a hashtag going around Twitter at the moment which is causing a bit of a stir. #DoctorsAreDickheads was started to share experiences of doctors abusing their power and causing patients unnecessary pain, distress and invalidation – something that disabled people are disproportionately effected by seeing as our lives are often filled with visits to the GP or specialists.

To be honest I find these issues common across the board with ‘professionals’ in all sectors that deal with disabled people. There seems to be this unshakable view that we do not know what we need, think, feel or experience. I have experiences of this with OTs who refuse to listen to my needs for a powerchair – ultimately ordering one which I knew wouldn’t be suitable for me, to car adaptation people who don’t listen to my view on what is wrong (based on experience) and instead remove my source of freedom for days, only to come back and tell me I was right. I’ve also had issues with social workers, physiotherapists, the head of SEND at school, PAs, and of course doctors.

Although I love the NHS and I support it 100% (I doubt I’d be here without it!), I often feel uncomfortable when there are pieces on TV that paint it in an unequivocally positive light. The pieces that talk about all NHS staff being wonderful, caring, kind and amazing superhumans. I get why they are doing this, especially now as the system is under threat and is being systematically destroyed to enable privatisation to be seen as ‘the only solution’, but I also feel that this narrative further invalidates all of the people who have had avoidable negative experiences.

The truth is they are all just humans, they are no better or worse than anyone else out there. Yes they often have a wealth of knowledge, work long hours and see traumatic things but they are not infallible. They have the same biases, preconceived ideas and susceptibility to a bit of power going to their heads as anyone else but because they are so highly regarded, and in a position of power this often goes unchallenged and is seen as morally wrong to ‘disrespect’ a doctor who is ‘obviously’ only trying their best for you. You only need to take brief dip into #DoctorsAreDickheads to see this, though I am heartened by the growing number of doctors who are taking a step back and saying “No, we need to listen!”

My own experiences with doctors have been up and down. I’ve had one consultant in particular who has caused unnecessary damage to my body and other experiences that should never have happened but the system protects them – my mum has been told by an anaesthetist “If you had complained we would have closed ranks”, when all we wanted as an explanation and perhaps an apology, not for the incident, but for it being turned around into her being accused of my injuries.

To prepare for the inevitable switch over to PiP (a disability benefit) I have recently requested my medical files from the hospital I used to attend. When sending out copies they are allowed to retract anything they feel ‘may cause you distress’. I wasn’t exactly shocked to find any mention of any of the issues that I have had whilst admitted onto a ward at the hospital have been taken out, along with any mention of the formal complaint that we made or their response (this should have been included as a smaller complaint was detailed). I did discover that my consultant knew about a medical issue that I had a good three years before I did, evidently he didn’t feel the need to inform me and he states that he doesn’t see the need to enter into any treatment – this issue ended with me having three operations.

Luckily, now I am under a truly AMAZING Professor, who is everything you would want in a doctor. Just this week I went to him as I am experiencing pain, he listened, did the tests, and although there was nothing that could be seen he still offered further investigations and left it up to me to decide how I wanted to proceed. His exact words were “I need to listen to you, based on your experience of pain and your body do you want to have the CT scan or wait it out and see what happens?”. Previously he has also signed me off work sick and ordered me onto bed rest so that I didn’t make things worse, however this time I was relived that he listened when I said that I really don’t want this as I am on a 12 month contract and absolutely do not want to take time off unless I absolutely have to. He understood my career aspirations and that I am more than a diagnosis, a thing to be treated, that my happiness is also important and sometimes this means a trade off.

I chose to wait it out and also to reduce how much I go out and am active as much as I can, and I know that if I call him in six weeks and want to take it further he will arrange that for me. The power that being enabled to have some control, in being believed and keeping that narrative open is invaluable. I went away knowing that he doesn’t think I’ve wasted his time and shouldn’t have bothered him which means I have more confidence in seeking help in the future but also more confidence to trust my own judgements about my body.

Ultimately I think some #DoctorsAreDickheads and I think the system we live in enables poor attitudes and little accountability for when things go wrong. I’m lucky at the moment that I have found one that doesn’t seem to fall into this trap and I am so grateful, however I know that at some point he will retire and then I will be at the mercy of whoever takes over and my fight might start all over again – which is why it’s important to continue to highlight the problems of the system and not just celebrate the good points.