Hi, I started a petiton to introduce mandatory training in ASC for all NHS mental health services - If you're from the UK it'd be really great if you could sign it! I wrote a blog post about it so I'm just going to repost that here (as long as there is no word limit hahaha), since it explains it in more detail.
Added the link to the blog post since it has hyperlinks, as well as key info. in bold, to make it easier to read, so feel free to check it out there if you want <3
Petition is here: https://petition.parliament.uk/petitions/207658
Blog post link is here, because it has key info in bold, and all hyperlinking on if you wanted to see any of the references, but if you don't you can just ignore it: https://declandevlinblog.wordpress.com/2017/12/19/ascpetition/
Additional Information on our Petition to Introduce Mandatory Training on Autism Spectrum Conditions, for Staff Working for NHS Mental Health Services
government to introduce mandatory training on autism spectrum conditions (ASC) for all staff working for NHS mental health services.
Due to the character restrictions I was not able to be as detailed there as I would have liked, therefore I am going to post some supplementary information here.
I cited a few statistics, such as approximately 1 in 68 people having an autism spectrum condition. Over 50% of autistic people having depression. As well as the disproportionately high rates of suicidal thoughts and behaviours in autistic people. In addition to this I made a few claims, such as autistic people having difficulty accessing services, and NHS staff being insufficiently trained at treating and supporting people with an ASC. I believe that the information provided would lead people to infer and make the leaps which I hoped they would, and to easily understand why the information I provided was relevant. However, I was unable to cover a few fairly major points which I believe to be important. In addition to this, some of the points I made could benefit from some elaboration. Therefore the aims of this post are to;
1 – Elaborate on some of the points made in the petition.
2 – Explain some additional points which I was unable to include in the petition.
3 – Provide some context to what we are asking for, and to explain the things that are currently being done to improve the lives, and care, of autistic people.
4 – Bring attention to a few of the ways in which you can get involved in combating these issues.
1 – Elaboration on the points made in the petition
I drew attention to estimates of the percentage of the population with autism spectrum conditions. You may have heard various figures: 1 in 100, 1 in 68, more recently this is has been even higher. Although the exact number is not important and can be affected by various things, such as greater awareness and changing diagnostic criteria, somewhere between 1 and 2 percent is probably fairly accurate. What is important is that a significant minority of the population is made up of people on the autism spectrum. Therefore, autistic people need accommodating in all areas of society, such as education, the workplace, and our support services. Despite the incredibly large number of autistic people living here, the United Kingdom being an autistic friendly society is still far from being a reality.
In addition to there being a significant number of autistic people living in our country, they are also more likely to need support from our mental health services. Included in our petition was the fact that at least 50% of autistic people have depression. There is also a higher prevalence of mental health conditions, such as anxiety. The lack of understanding of autism often leads to things like bullying, and feelings of isolation. There is also an unfortunately large number of autistic children being suspended and expelled from schools, and 63% of autistic children are not in the kind of school their parents believe would best support them. Therefore you could argue that the lack of an autism friendly society contributes to there being an increased need for autistic people to access mental health services.
According the National Autistic Society, “70% of autistic adults say that they are not getting the help they need from social services”. They also said that “with more support they would feel less isolated,” and “at least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support”. It is clear that those with autism spectrum conditions not only require more access to our services, but that these services are failing them.
I also mentioned that the National Autistic Society argues that ‘Transforming Care’ implementation needs improvement if it is be effective for autistic people. I will go into this point in more detail in sections 2 and 3. It is undeniable that anybody who provides care for people with autism should be sufficiently trained. The points outlined above show that anyone who works in our mental health services will regularly have to provide care for people with autism, and therefore they need to be sufficiently trained, which is definitely not the case as of right now.
2 – Additional arguments
It is important to make clear that introducing mandatory training on ASCs for all staff working in NHS mental health services is the absolute minimum that needs to be done. The ideal situation would be for there to be understanding, accommodation, and acceptance for autistics across all aspects of our society. Earlier this year Simon Baron-Cohen argued that autistic people’s basic human rights are still not being met, therefore it is evident that this is a much larger issue that this one request makes it out to be.
In a House of Commons debate this November, the Shadow Health Minister Sharon Hodgson claimed that “accessing a diagnosis is the first step towards securing support”. This is definitely true, Hodgson also argued that “it is a scandal” that waiting times for an autism diagnosis can be as long as 125 weeks. I have slightly avoided this topic since there are things being done in attempt to combat this. The acknowledgement that waiting times are too long, and that support services are lacking is a positive step. However, this is further evidence that there are a large number of autistic people without an official diagnosis of autism. This is only partly due to the lengthy waiting times, but that is an area in which we, and our government, are responsible for. Therefore I deemed it necessary to draw attention to it here, because if the government responds to our petition they could claim that there are several things they have done/are doing to combat these issues (some of which I shall discuss in section 3). I want to make it absolutely clear that all of the current schemes in place exclude all autistic people without an official diagnosis from accessing the support ‘available’. To some this may seem reasonable, however people not having an official diagnosis is in many cases our fault.
The majority of staff on acute mental health wards will not be aware of the reasons why all of their patients are there. Therefore even with a diagnosis, the people who actually interact with them on a daily basis may not be aware that they are autistic. This is one of the reasons why it is so important that staff have some kind of understanding of autism, so that they can identify where miscommunications are happening, and where care may need to be adjusted due to certain patients present differently. When misunderstood, autistic traits can lead to misdiagnosis, and unnecessary lengthy stays on mental health wards. Not only are these long stays in hospital unnecessary, but they can be incredibly detrimental to an autistic person’s mental health. The National Autistic Society’s report on the implementation of Transforming Care, outlined “serious failings of care including incorrectly supplying heavy doses of antipsychotics when no psychosis was present, unnecessary use of restraint and a lack of staff trained in autism”.
The National Autistic Society provided great case studies of this kind of mistreatment, but it specifically resonates with me since I have personally had similar experiences. I have been restrained, and injected with antipsychotics against my will. The fact that this is still happening to people is horrifying. So much of this literal abuse, could be avoided by us properly training and educating our staff working in mental health services. The Mental Health Act (1983), does allow for this kind of thing to happen, but it does not mean it has to happen, the way in which autistic patients are treated on mental health wards is something which would never be allowed to occur on any other kind of hospital ward, nor anywhere else in society. The Mental Health Act (1983) is rightfully under review, which is of course welcomed. But in the meantime our mental health wards are reminiscent of the Stanford Prison Experiment. The treatment of autistic people, with or without a diagnosis, on mental health wards is one the greatest failings of our society. I am confident that if people were aware of this reality which we are living in, then we would make fixing this a priority.
3 – Additional Context and Suggestions
I mentioned the House of Commons debate on November 30th on “Mental Health within the Autism Community”, I wanted to point out how positive that debate was, and to show appreciation for all of the MPs across all parties who contributed. I will use key points from the debate as a framework for this section. Despite the positive discussion, the examples and statistics given during that debate showed failings across all areas of our society in providing adequate care for autistic people. The five year forward view for mental health was singled out since it recommended that NHS England develop autism-specific care pathways, yet there is still no information “on the timetable, the scope of the pathway, or who will be leading this issue”. This kind of thing is not an isolated occurrence.
The Autism Act was first introduced in 2009, putting a duty on the government to produce a strategy for autistic adults, and to produce statutory guidance (which they did) for local councils and health bodies to implement this strategy. The latest autism strategy is under the name ‘Think Autism’, and was published in 2014, and the latest version of statutory guidance was published in 2015. It is also so important to note that this really is not an issue of funding, the National Autistic Society, even explains how correct implementation will actually lead to savings for our services. More information about this can be found here, if you are interested, as it touches on things like the lack of inclusion for children with autism.
It is now eight years after the introduction of the Autism Act, and people are still waiting years for diagnoses, and mental health professionals are often not receiving any training whatsoever in this area. Although we are talking about issues like reducing waiting times for diagnosis, and how GP surgeries need to be more accessible to autistic people, without properly training the people who will actually provide care for patients, we are not going to be providing much actual real world benefit to autistic people in the short term. Beginning April 2014, the Royal College of GPs made autism a priority for training and awareness over the subsequent three years. It is evident that sufficient progress has not been made in a fairly substantial amount of time, despite the same issues and recommendations being repeated brought up. If after eight years our waiting times for assessment for diagnosis are still abysmal, how can we really argue that our services are equipped to help these people post-diagnosis. I do support these initiatives, however it undeniable that they will not effectively tackle all of the issues we are facing, and their implementation is seriously lacking.
NHS England’s Transforming Care programme is very positive, and focuses on improving the quality of care for people with learning disabilities and/or autism spectrum conditions. However, a report from the National Autistic Society exposed serious failings and called for “urgent improvements”. This cannot be ignored, I will not go into all the recommendations they made here, but you can read more about them on their website. It is important to again emphasise that their suggestions are not new, these are the very things which the Autism Act, Statutory Guidance, and Transforming Care, are all meant to be achieving. One of the NAS’s six key recommendations is that “Inpatient care providers must ensure their staff are properly trained and their practices do not rely on excessive restraint and medication”. Which is essentially what we are asking for here, although our request is slightly broader. One of the issues unfortunately left out is that like I mentioned previously, Transforming Care does not benefit those without an official diagnosis. If, for example, you are admitted to a mental health ward without an autism diagnosis, you will not be able to access a Care and Treatment review to aid you in receiving the care and support you need as early as possible. There is also no obligation on the people providing your care to refer you for an assessment for autism, or for reasonable adjustments to be made, even if you go on to receive a diagnosis during your admission.
This is unacceptable, and I obviously was not able to include this in the petition itself, but more definitely needs to be done to provide support for autistic people who do not yet have a diagnosis. Making training mandatory would help this issue since at least then care providers will be aware of how to effectively provide care to those who exhibit autistic traits, and to be able to refer these people for assessment. An additional solution to this would be to give GPs and psychiatrists the ability to provide some kind of “provisional diagnosis” of autism. In which, while a person is awaiting an assessment for diagnosis, if they happen to be admitted to an inpatient mental health unit they will (in addition to being referred for assessment as soon as possible), be able to access the same support and reasonable adjustments as someone with a diagnosis would be able to receive.
The petition was approved earlier than I expected it to be therefore I have not been able to spend as much time on this post as I would have liked, however I will definitely write more on this topic in the future. I wanted to quickly add that I did contact Health Education England about the kind of training resources available. They informed me that they, in partnership with a range of Autism expert groups have agreed to work on some of the issues I raised. “This work is set to start in January 2018 …and will be led by a task and finish group the output from the group will be something which can be used for all health & care staff including NHS Staff highlighting the best practice core competencies and skills needed by various staff groups across the workforce”. They were unable to provide much more information before that work has actually started, so I don’t really have much to add here, I just thought It was worth a mention since that information is relevant, but not really available elsewhere.
In responding to the House of Commons debate, the Parliamentary Under-Secretary of State for Health, Jackie Doyle-Price made a great point while discussing the usefulness of debates like this in pointing out that “sometimes the most simple, practical things can make the biggest impact. It surely cannot be beyond the wit of any of us to make sure that GPs receive appropriate advice about things like lighting, and even having a quiet area”. I hope that this same attitude can be extended towards educating the staff working in our mental health services, and the other points which we have raised in this post.
4 – What can you do now?
Firstly, I would like to thank you if you actually read this post (or some of it at least), spreading awareness of these issues is one of the most important things which we can do in this situation. Here are three things we would wish you to sign.
Our petition: https://petition.parliament.uk/petitions/207658
Emma Dalmayne’s petition to Make Autistic ‘Cures’ Illegal In The UK: https://www.change.org/p/phillip-dunne-make-autistic-cures-illegal-in-the-uk
I think Emma is doing really amazing work, and you can follow her on twitter here : https://twitter.com/EDalmayne
The National Autistic Society’s open letter to the Secretary of State for Education for the Government to develop a national autism and education strategy: https://act.autism.org.uk/ea-action/action?ea.client.id=10&ea.campaign.id=82112&ea.tracking.id=NASWebsite
You can also follow the National Autistic Society on twitter here: https://twitter.com/Autism
I will also of course be posting updates of this campaign on my twitter, and will hopefully be doing more things like this in the near future to help improve the lives of people with autism spectrum conditions. I tried to keep this post neutral and not involve anything too personal or emotional, but it’s so shocking the kind of mistreatment autistic people receive on mental health wards. I am constantly reminded of how Hans Asperger spoke out to literal Nazis to try and protect his autistic patients from eugenics programmes. In doing so, he was risking his career and his life. It is disappointing to see that many doctors today are unwilling to even risk admitting they might be wrong, or not understanding something, in order to help significantly improve the lives of one of their patients.
My twitter is here: https://twitter.com/DeclanKDevlin
[Please get in touch with me via my twitter if there is anything inaccurate, or incorrectly referenced here. Also, please feel free to re-post anything here which I have written without asking for permission first – although this only applies to my own work, obviously please correctly reference any of the things which I have taken from other sources!]