Below is what we ended up sending to our GP, NHS Grampian, Nuffield Brighton, our MSP and a few others… Each getting added contextual information.
How the hell this came about, we are several days later, still unclear. Nobody will give us a straight reason at this time.
For now, we try to hold it together, fight on.
Try to seek answers to stop our future treatment failing again or being prejudiced based on them thinking we must have done something to deserve this.
Brighton are trying to get us into London with Tina Rasheed. However, not knowing what has led to this, we are terrified of what we will face there. What they will put in place, based on whatever fears they have amplified since we disclosed to the NHS we are trans and neurodivergent. They have already made us feel sub-human. We will go through much, and have already done so, but it is so scary that we will be treated based on the premise of some unfounded fear and be in a vulnerable situation where we cannot do anything about it. We have gone in their eyes from someone who sat on multi-agency teams with educational psychologists, social workers, doctors, speech & language specialists, care providers, as a representative of education whilst we taught in a specialist educational setting for residential students with autism and complex needs. To something to be terrified of because of some reason they will not tell us.
All of this going on in a wave of unprecedented transphobia sweeping the UK, which makes it even worse.
This is us, sending a selfie to our wife and children. Having spent the night at the Nuffield Brighton hospital, stopping our hormones, adjusting our routines, ensuring all physical work for the household was completed (we are electric only and when we have multi-day power cuts which are now more common, and temperatures that in winter have fallen to -15°C at the house, that meant cutting and splitting the entire winters wood stores in a matter of weeks) and getting there by taxi, plane, train and bus. We had done all our tests, including having to scan and email them ourselves. Just prior to that picture, we had showered with sponges as preparation for surgery, and put compression stockings and gown on. We sent that picture with the message to our girls: “Showered, gown and stockings on Blåhaj propping pics for later 👍 Just the not fun enema bit to go 🤪”
Shortly after that, we were told our surgery could not go ahead and we needed to get dressed and go.
We want to know, how this traumatic and frankly appalling incident came to happen.
We fully expect institutions to go into the mode where they look to protect their reputations at all costs, and that each part of the system will deny responsibility and leave us feeling worse as it is spun to make it seem like our fault and presented as “in our best interests”.
We have been open and honest about who we are the whole way through the process. Indeed when we first approached our GP for a Gender Clinic referral years ago, we disclosed that we were also plural. (Sadly that kicked off the multiple problems with healthcare, as we explicitly stated that was contextual information for which we were not seeking help. Our GP then referred us to Psychology against our wishes instead of the GIC that we requested) That any perceived issue should be raised at the very last minute, is not a failing on our part no matter how it is presented.
We received our referral from the GIC. After which, we were sent a choice of hospitals to select. We had no guidance as to suitability, or capability of any of these, so we researched as best we could for both surgical teams and environment. We selected Brighton having considered these as best we could with the limited information we could find. We selected Brighton in no small part because it wasn’t in the City of London and the calmer environment on the outskirts was far better for us who find cities overstimulating and exhausting.
We had the confirmation from GDNRSS and waited to hear from Brighton Nuffield.
This than happened, we did our consultation, and filled in all the requisite paperwork. No issues were raised with us. We talked openly and were assured “It will be okay. We have had people more autistic than you.” Which did make us raise an eyebrow at the understanding of autism, but seemed that they were fine with neurodivergence.
We then approached our GP. Checked they could do all the tests needed, which was not a given as they have in the past been very difficult. Since recent changes, we will say that seems to have improved, but getting to see them was hard, and they didn’t really know how to handle some aspects. We had for an example an ECG which we were not expecting, and seemingly Brighton Nuffield were surprised as it is not normally needed.
We then had our admission telephone call which was all fine. Again no issues raised other than we hadn’t filled in an Autism Passport as we hadn’t been supplied with one. We queried if they had our test results, and they said no, but it could be the GP being slow. We told them we had a copy physically that we would bring with us along with the Autism Passport that they would mail to us.
Two days before surgery we get a phone call from the secretary of the Nuffield Gender Clinic that they hadn’t had our results. We agreed we would scan and email. Which we did, with some hitches as we had to send her subsequent emails with the PDF broken into smaller multiple sections as she couldn’t print it.
We then travelled and were admitted into Nuffield Brighton, and everything progressed with no indication of any issues until that last minute we described at the start.
We were told that the nursing team had concerns that they could not care for us post operatively, and we were too complex. We specifically asked what in our conduct had given them reason to think this, and we told nothing other than we were plural. At NO TIME previously to this had any member of that team spoken to us about this or acted in any way to give us opportunity to address this.
We were left trying to analyse what we had done to bring this about. As we had been open, cooperative and as accommodating as any other person. We wonder if having described some of our past poor experience with the NHS that they decided that we deserved that and that gave them grounds for being scared. Or that while putting compression stockings on we broke a nail and said to a nurse we might need some scissors as we wouldn’t want to scratch someone. We wonder if our concern for them where we might during needing support accidentally catch them, was interpreted as this is someone who scratches people. We wonder if what we wrote in our Autistic Passport was interpreted not in support terms, but as something to deny care. We wonder if the reams of notes from our GP practice who at times has been deeply problematic, despite barely ever seeing us in person, contained something that scared them. Our wife in tears later apologised to us because she thought her anxiety might have caused it. Legitimate anxiety for a loved one and justified given the past history we have had with NHS treatment and also that of our daughter.
We will continue to wonder all of this, because we have no explanation.
It was traumatic and we will continue to relive that trauma. We do so now as we write this. It is difficult to see photographs from that day. Speaking to people who were expecting us to come back happy from surgery and explain what happened, each time causes us pain.
Family are shocked and outraged, friends are shocked and outraged. People that know us, have relied on us, cannot believe this has happened.
We feel again dehumanised and treated as if we are something to be scared of, not because of anything we have done, but just because we have been open and honest about who we are.
We were told to get dressed, as we needed to leave. We expressed the difficulties this would cause. The fact we had packed exactly the clothes for a hospital stay. Not several days in a city. That we as a dysphoric trans woman had not brought suitable underwear as we were expecting to leave with different requirements. That we could not be sure when we could get home, if we could change the flights as they were booked for us, and we couldn’t manage the booking independently. The stress levels of these rapid changes and uncertainties were off the scale for an autistic person, especially after the trauma of the last minute cancellation.
We ended up leaving the hospital as fast as possible after our wife got there and just get out of that environment.
We had no telephone number for the Grampian NHS travel. So we fired off an email and had to hope that they could help, with no way of knowing. Luckily, they were responsive and we were within working hours. They were the one helpful part of this on that day, and did get us sorted out with a suitable flight home. And whilst we will say that aspect was good, nobody ever directed us to them. It required quite a bit of internet searching to find them after paying for our consultation trip up front and not knowing how we could reclaim our costs.
We then had to, in a state of shock, navigate the busy city of Brighton to try and buy some suitable clothes and underwear to travel the next day, as we were wearing the clothes we packed to travel in. We had nightdress and vest tops, pyjama bottoms, slippers etc for our hospital stay. We were not ready to be in public doing social interactions having been through what we just had, but had little choice to go and try and do these things. When we talk of autistic masking, sadly we have decades of experience, but it is no less harmful because we can do it well enough.
We have spent lots of ancillary money in preparation and as a result of this, switching to more expensive online grocery shopping to check it works instead of our usual Lidl shop. Buying extra clothes for post operation. Spending money buying strange and often expensive food while travelling because we were limited by what was available, having to kill time in coffee shops because we had 6 hours before we could check into the hotel. All of which we looked at as part of the acceptable price of getting to where we needed to be. But now just feels offensive. Sure we can claim back taxis and some stuff.
This ordeal has left us broken and exhausted. Physically, emotionally it has taken a toll on us. It has had an equal toll on our wife and partner of 32 years. It has impacted our children and our household, who cannot understand why this has happened to us or reconcile what someone must think of us with the person they know.
We would use working class language very easily, and swearing would come naturally, but we know that any expression would be used as justification to dismiss us. No matter how we might feel entitled to be angry.
We type some of this at 2am on the Sunday morning, having failed to sleep again with what is rolling around in our head.
We would describe this as traumatic and dehumanising, with long term consequences for our mental health and a deep fear of how we will be treated going forward.
Signed CreatureOfTheHill (Document name withheld)