I had the privilege of taking up a new role of Associate Editor of Advances in Autism journal and my first task was at attend the 11th European Congress Mental Health in Intellectual Disability. It took place in Luxembourg this year, a country I have never been to. We arrived at Luxembourg airport during the evening and I generally realised what a small country it is, because this airport is half the size of Stanstead. Luxembourg is a beautiful country with its landscapes, scenery and architecture which is hundreds of years old.
We headed for the Congress venue the next morning, full of expectation and to see some old faces. The venue is a wonderful modern building which has the status of being one of Luxembourg’s premier venues for conferences. First point of call (and most important!) was to see what was in the goody bag. It was included the programme, a book of abstracts, tourist guide, a history of Luxembourg and a wealth of pens, pencils and rubbers.
The Congress was then opened by Raymond Ceccotto, President of EAMHID and in the presence of His Royal Highness the Hereditary Grand Duke of Luxembourg and a video welcome by Jean Claude Juncker, President of the European Commission. For all of the presentations throughout the Congress were translated into several different languages. However Jean Claude Junker presentation was not translated into English, I wonder why! The Congress was attended by over 500 delegates.
The first keynote was by Johan De Groef, who has managed services for people with intellectual disabilities in Belgium for several decades. This presentation was a great introduction to the subject of promoting mental health, inclusion and some challenges we face when working in multi-disciplinary teams and multi-organisations. He covered the history of people with intellectual disabilities in society going back hundreds of years ago. He spoke about the how mental health service and disability services separated some years back and how they developed their own approaches and identity. It was quite amazing to see how long we have all developed and now we are working in an era of co-production.
Then it was break time and an opportunity to look at the great posters and stalls. I was pleased to see a poster there by Karina Tate-Marshall from the Estia Centre, who presented how effective simulation based training is delivered by actors with intellectual disabilities and health professionals. This is a brilliant example of what co-production is!
I was amazed to see a recognizable face there, it was QT the robot! He (or she) is a robot that helps kids with autism recognise emotions and facial expressions. I spent some time speaking with the exhibitor and I was really impressed with her knowledge about how QT was designed, about autism and research about the effectiveness of QT. I took my chance to have photo taken with QT (above).
There were so many interesting symposiums to choose from. I went to a series of presentations regarding forensic issues. The first was about personal experiences of the Criminal Justice System (CJS) in Norway by individuals with autism. The study interviewed nine people with autism and asked questions about the process of arrest, investigation, trial and imprisonment. They found that people are generally confused by reason for the arrest and the trial proceedings. Also many reported that their lawyers misunderstood them. But most informed them how they coped well with prison life and this maybe down to the huge levels of structure in the environment. They recommended that the police and CJS needs to be significantly improved when they come into contact with people on the spectrum, especially know more about autism and how to approach and communicate with this vulnerable group.
Next presentation was about gender dysphoria in people with learning disabilities in forensic settings. This is one topic that I know very little about. Gender dysphoria is characterised by a marked difference between the individual’s expressed or experienced gender and the gender that others would assign to them. They found a prevalence rate of 8.19% among people with learning disabilities using forensic services in East of England region, opposed to 1% in the general population. They recommend that further research is needed to establish the underlying reasons for this trend and any associations between gender dysmorphia and offending behaviour.
Next presentation was by an old colleague of mine, Eddie Chaplin from London South Bank. They researched the prevalence of Neurodevelopmental Disorders (intellectual disability, ADHD and autism) and co-morbid mental health among a London prison population. They used standardised screening and diagnostic assessments to screen 240 participants. Eighty seven (87) screened positive for neurodevelopmental disorder. Around 51% of these had high rates of mental health problems. The research found that the regular screening is of benefit to the prisoners and staff, who will be able to make reasonable adjustments.
Next was a number of ‘focussed communication’ by key people in this field. I would be in trouble if I missed a talk by Prof. Nick Bouras of the Institute of Psychiatry, my old boss. His reputation as the one of the leaders in developing this field, his wealth of research and published work is of the highest calibre. He talked about his work in southeast London, with the closure of an institution which led to the start of community care. He cited several epidemiological studies which found that people with learning disabilities are more vulnerable to developing mental health problems due to a range of biological, psychological and social factors. This was an excellent presentation, with only standing room left. It was a talk through the history of service development from someone who was actually there and fully involved.
One important lesson I learned from this congress is to think about what you put on twitter. I am an enthusiastic tweeter and I post news involving people with learning disabilities and the work of the Can You Understand It? Team every day. I took photos of one very interesting presentations about autism and offending. A slide covered some possible reasons why people with autism may commit offences, and it only covered the headlines and then the presenter added a spoken narrative. Some people responded to this tweet, mostly like receiving a cold caller and they expressed offence at this tweet. I think that people should think about they are reading only sound bites on twitter, as you are only allowed 140 characters and the narrative provides so much more. So I will think about this in the future and avoid receiving cold calling tweets!
This blog is just an insight into the many high quality presentations at this congress and it shows how much worthwhile research is going on across Europe and the rest of the world.
By the way the next Congress is in Barcelona in 2019 and I highly recommend it!
Practice Development Nurse
Adult Learning Disability Service
Oxleas NHS Foundation Trust