On the 22nd May I attended the first of several days training to be delivered by Derbyshire Healthcare NHS Foundation Trust. I had approached the county’s Clinical Lead for Adult Autism, Gaynor Ward, a while ago to see if there was anything I could do to help progress awareness in the organisation. Gaynor, who is a fabulous individual as well as being shit hot on Autism Spectrum, welcomed my input and we organised for me to attend over several one day courses as an opportunity to see what exactly was going on, as well as feedback and prepare for the intensive three days I am presenting at later in the summer.
I have to admit that I was feeling a little trepidacious about going into professional development as a patient. In the last five years I have had a huge amount of contact with many professionals in the organisation and have at times been quite critical of the service I have received. Initially when I first sat down I simply introduced myself as I didn’t want to draw attention to the fact I was still a service-user. I did however, run into two Crisis Team nurses who have attended to me when I have been struggling. One of them was the first contact I had ever made with this team and completed my first ever assessment (one of many). She had been a brilliant support over the months I had worked with her and I had a lot of respect for her professionalism. It was lovely to be able to update her on just how well things are going at the moment, and how my lived experience is becoming a driving force in my recovery.
The training was delivered by Gaynor and two of the Trust’s new assessors, Rosa and Anna. The format was fairly standard powerpoint most of the time, with some interesting diversionary exercises that included a Glen Campbell record and a word-search. Gaynor is also a self-diagnosed Aspie, and the ‘unique’ nature of some of the work we did shone with her alternative approach to engagement. Topics covered included the clinical side of the diagnosis and traits, presentation and challenges, as well as adjustments that could be helpful when working with Spectrum Adults. It was also heartening to see a lengthy discussion and specific mention of the different, and often misunderstood, presentation of women.
The team of three split the training well between the topics and their specialities of Clinical/Nursing, Psychology and Speech and Language Therapy complemented one another well. Despite the pace being steady, the content delivery was intense and although seven hours were given over to the exercise there was still a large amount of content that needed to be skipped over because there simply wasn’t enough time to cover everything off.
The best bits by far for me were when the trainers and participants recalled personal experiences.
Anyone on the Autistic Spectrum is likely to be unique and the old adage of having met one Aspie means you have met one Aspie rings very true. Without mentioning names and dealing with the subject sensitively, real life examples expanded out the quite dry subject matter of Autistic presentation into something living and breathing; the reality of nursing practice as I understand it. Most people in the room had lots to say about people they had worked with in the course of their careers and there were also a number of lightbulb moments when realisation erupted at just what had often been baffling was it fact someone with Autism.
The room’s engagement was highest at these points and during the feedback session I contributed to afterwards I reflected back these times were when people had the most to say. Unfortunately the political correctness fairy made an appearance and discomfort was expressed at knowing how people might feel when asked to discuss this kind of thing. I certainly can’t speak for everyone on the Spectrum, but I do know that given how direct and forthright was mostly are, I would be perfectly happy for anyone of the professionals I have worked with to share their experiences of me if it meant that colleagues of theirs would gain greater understanding into my experiences and for others to benefit as a result. There was so many people on the Spectrum with comorbid anxiety and stress that anything that can be done to forward our cause is a bonus for me.
The three trainers were a great team to interact with, mainly because the breath of fresh air of their understanding is so welcome. One of the chairs behind me was squeaking loudly and repeatedly halfway through the day and I ended up having to nip out and have a few minutes flap (see here for stimming if you are unfamiliar) in the toilets because it got too much to deal with. I told them about this and the whole situation was met with some mirth, which was lovely. I felt comfortable enough to share something that has become intensely private because of the humiliation I was subjected to as a child when i did this in public. Overall, despite having just met Anne and Rosa I quickly felt very comfortable with them, even though my social anxiety spiked at feeding back directly on their work when we had only just met.
As a group we spoke at length about where and how I thought the content and delivery might be tweaked.
Gaynor, Anne and Rosa were all very receptive, and much scribbling indicated (at least I hope) that my ideas held some merit for consideration. As the one day training is going to be conducted by different people across each iteration I am going along to all three days to see how everything develops. There is also a chance it seems that there audience type might be made up of different staff disciplines, so seeing just how each might respond, as well as the content change is going to be fascinating. I also had some quite silly ideas about audience participation that could be used to increase the understanding of some of the very real challenges Spectrum individuals face on a daily basis. These should be included in the intensive training and seeing how they impact is something I’m really looking forward to.
The most insightful and valuable thing that I took away from the day was the chance to listen unobtrusively to the staff point of view. Autistic rights are something I feel very passionate about and I know that I can at times become confrontational, especially in a crisis, if my individual differences are poorly understood. This is simply because things could be so much easier for everyone with a few small changes. I try not to, but can get caught up in my own world-view and keeping in mind that mental health nursing is highly stressful, you can forget that people who work with you are doing the best they can in a system that is poorly funded and not very fit for its current purpose.
Despite the 2009 Autism Act, the commissioning of services and development of staff for Spectrum individuals is really still in its infancy. There is a huge strain on all areas of the health service in this capacity, with waiting times in Derby topping three years recently, something that is now at last being positively addressed.
The chance to hear and see the genuine concern by the teams and individuals who attended reaffirmed my faith in the work that they do and was a very needed reminder that each and everyone was a human being just like me. As much as I dislike being treated as a diagnosis, I have at times forgotten the humanity of the people who work with me, just as mine has been temporarily mislaid.
The event had been carefully planned with entertainments and distractions to suit all ages and temperaments. Carefully constructed linear face painting, turned participants into living works to admore alongside those hung on the walls.
The museum cafe was transformed into a lively bar, complete with DJs and doodling invitations enticing passers by to linger longer.
The fabulous culmination of the Twitter hashtag, #findinglines were displayed in a colourful and engaging grid of pictures, continuing the co-produced themes that permeate Derby Museums Trust work.
