"Inadequate Autism Informed Mental Health Support"

I write as the parent of a young woman who is Autistic and has mental health issues since adolescence. For 6 years we have progressed from CAMHS including admissions to an in-patient psychiatric ward; Skye House to adult services from Adult Community Mental Health Team (CMHT) and Psychiatric Services at Hairmyres Hospital.

In addition to this, we have sought the support of a private counsellor as well as South Lanarkshire Council’s Autism Resource Co-ordination Hub (ARCH), both of which have been excellent and without which I am confident that my daughter would not have survived thus far.

My lived experience in trying to access appropriate autism informed support for my daughter, leads me to believe that the issues faced by us indicate systemic and practice inadequacies and inconsistencies inherent in the current mental health system provided by NHS Lanarkshire.

It would be emotionally exhausting to list all the events spanning our post diagnosis journey, however my concerns can be grouped into the following categories:

• There is a huge gap between what NHS Lanarkshire purports to offer patients and what is actually delivered ‘on the ground’.

•Silo working. On multiple occasions, non-medical professionals (including an organisation which is part of the relevant Health and Social Care Partnership) have attempted to engage with CMHT staff, to express concern about my daughter’s safety and to offer their informed perspective. However there has been a consistent refusal on the part of the psychiatric services to engage with them, despite my daughter's consent. I believe that this inflexible stance has amplified the risk of harm my daughter presents to herself and continues to expose her to risk.

•Lack of appropriate out of hours crisis support. My daughter has frequently attended the A&E Department at UHH (often brought by the police following a serious suicidal episode) or accompanied by another professional or myself, only to be discharged by Psychiatric Liaison. This has on multiple occasions, led to my daughter leaving the hospital feeling frightened and hopeless, only to try to end her life again later that night. The approach of the psychiatric liaison team is overly ‘firm’ rather than compassionate and they appear to have reached a ‘non-admission’ stance before even assessing/regulating her, often referring to the consultant Psychiatrist’s instructions to refuse hospital admission contained in her notes. This position, expressed repeatedly and by several mental health clinicians, has been refuted by her consultant psychiatrist who has asserted to us that he has never entered any instruction of this kind.

•Lack of consideration of ‘reasonable adjustments’. I am concerned about the apparent lack of consideration given to the need for ‘Reasonable Adjustments’ for my daughter, when presenting at Hairmyres Hospital and sometimes also at CMHT e.g. Staff often push to see my daughter on her own, despite her stating that she would prefer to be accompanied. Staff often comment that my daughter is very articulate, which although true, is then taken as an indication that my daughter does not require reasonable adjustments. Considering whether or not a disabled patient requires adjustments to be put in place should be a routine practice in all my daughter’s interactions with the service. (Ref Equality Act 2010)

•Judgements in relation to suicidality and risk. On numerous occasions my daughter has been brought to A&E by Police etc following a high-risk suicide attempt, having either overdosed or been found readying to throw herself from a motorway bridge etc. During ‘assessments’ by Psychiatric Staff, it is often stated that my daughter didn’t actually kill herself, but rather told someone of her intention. This is described in terms such as suicidal gesture or para suicide and is regarded as an indication that successful suicide is less likely. This feels like a cynical response to a genuine attempt and undermines her integrity when she is in most need of compassionate care. I am perplexed as this had become predictable custom and practice. Research shows that the most accurate predictor of suicide in autistic people is repeated attempts and that most autistic people who have successfully taken their own life, clearly stated their intent to do so. The same research has shown that autistic adults are between 9 and 20 times more likely to complete suicide than their neurotypical contemporaries.

•Hospital Admission – Despite my daughter repeatedly attempting to take her life and the fact that the police have had to ‘intercept her’ and take her to hospital, she is almost always sent away from hospital unsupported. This has sometimes led to immediate further attempts and police intervention. There is often the promise of support in the community, which has failed to materialise. This has left us feeling abandoned and invalidated.

•CMHT - In addition to the aforementioned issues, we frequently experience ‘false promises’ from CMHT staff, whether that be to return my daughter’s calls, or to come back with a response to a question. This is a massive disappointment, especially when autistic and in a distressed state. More worryingly, it erodes the confidence which my daughter needs to have in the service, especially at times of crisis. My daughter has been asked if her autism makes her mental health worse, but this is ironic as she is also told there is nothing that can be done to help, as her distressed condition is an expression of her autism. This is completely confusing.

•Me and some of the non-medical professionals involved in my daughter’s care have repeatedly tried in vain to raise our concerns with my daughter’s consultant Psychiatrist and CMHT and are left in the terrifying position of fearing that my daughter will soon successfully take her life.

Having genuinely run out of ideas about how to influence NHS Lanarkshire towards adequate and appropriate support, this account of our lived experience is shared in the hope that it will prompt a fresh look at things and avoid an increasingly likely tragic suicide. This is an opportunity for the services to consider these issues, while my daughter is alive.