Over a period, I have accumulated years of experience working in specialist autism and learning disablities in patient settings and during this time I have asked many questions which I believe a relevant and necessary. However, to date I am unsatisfied therefore I am pouring my thoughts on paper as to relieve myself of the burden and frustration.
Based on a true story I aim to share my thoughts and to seek some answers. The most recent case I came across is just one incident but a pertinent one considering the national outcry against chemical and physical restraint in inpatient settings. The case is based on a true event, but all identifiable features have been anonymised.
Geeta an 18-year-old female was admitted in an inpatient setting, a ward specializing in the ‘treatment’ of mental illness tailored for adults diagnosed with autism and or learning disablities and or learning difficulties. The reason for admission was ‘responding to stimuli’. The young woman was laughing and talking to herself. Although speech content was strange overall Geeta appeared undisturbed by her experiences.
She remained in the ward for some weeks, daily observations summarized a young woman who appeared to be her own world, laughing out loud and times interacting with her peers and staff. A young woman who enjoyed music and watching fantasy movies breaming with bright colors, constantly changing outfits, dancers, and colorful lights.
Geeta ate and drank well and was concordant with her medication, she often entertained staff by pointing out the obvious and repeating instructions intended for other patients. Geeta appeared to have the skills like putting her own clothing but required prompting.
After a few weeks late Geeta was prescribed Clozapine, an antipsychotic prescribed to treat psychosis. The side of effects of this drug are significant, from dizziness to increased risk of seizures, weight gain and tiredness. It entails persistent physical health monitoring, regular blood tests and blood pressure monitoring. Often changing the essence of the person as a human being with personality and character.
As a nurse my job is to advocate on behalf of my patients, to monitor both mental and physical health. Whilst caring for Geeta I had a persistent niggling uneasiness, what if she was autistic? We have very little background developmental history; parents have a different perspective of disability based on their cultural values and upbringing in India. Could it be possible that what is defined as psychosis is a feature of autism?
So here I deliberately digress a little, this blog has two points which I would like to share with the audience.
- The identity crisis some mental health nurses experience whilst working in psychiatry, stuck between psychiatrists and psychologists we are at times seen as mere ‘doer’s’ not ‘thinker’s’ or ‘questioners. Yet as a menta health nurse my core aim is to advocate on behalf of my patients and ensure that the care I provide is embedded in the 6’c’s etc. etc. but in practice the hierarchy and often conflict between medical and social models often buries the nurses’ concerns, ideas and questions in the ongoing staffing shortage saga.
- Inpatient mental health wards specialising in providing treatment for autistic adults and adults who have learning disablities are only good when the service provided is truly specialised. Implying that the social model of disability must be fully incorporated and considered in delivery care and that the treatment should be focused on transitioning back to the community. Whereas often the regimes and constraints of the ward environment and indeed at times the treatment can further deskill the patient, often it would appear the staff working in these inpatient setting are themselves institutionalized into thinking that containing individuals is the only way. Furthermore, Mental illness must be fully defined as a separate entity from the features of autism. My experience of inpatient settings has been blighted with staff shortage and the overpowering medical model which undermines social factors. These factors I believe have contributed to the national outcry and demands of inpatient closure and yet my personal view is that there is a need for specialised mental health inpatient settings and once gone it would take years to replace these.
I return to Geeta, I shared my concerns regarding the onset of side effects since Clozapine was first administered, I became increasingly frustrated. DOLS had been put in place so even though Geeta was stating that she would like to leave the ward and return home, she was deemed to be lacking in capacity. However, there was no evidence of any exploration of other factors which may impede Geeta’s ability to communicate her wishes. She often appeared to be repeating statements from the video clips she watched repeatedly on YouTube. She often said some strange things and yet there were times when she was quite lucid, capacity can and does fluctuate. As the bank nurse working directly with Geeta I had little input in the capacity assessment or the decision to apply for DOLS, the final diagnosis is the remit of the consultant. As a nurse I can simply raise my concerns.
I digress again and this time I would like to share this thought
- With the national shortage of nurses, as a nurse on the brink of leaving the profession is it time that the role of Mental Health nursing was redefined? I see the role as a hybrid between a social worker and nurse and yet we sit at the bottom of the hierarchy underneath psychologist and psychiatrists. We are the doer’s, reviewers’ but not the ‘thinker’s and the ‘questioner’s is time for us to shift the focus on our role as decision makers.
Finally, I return to Geeta, so I took it upon me to refer Geeta for an autism assessment. I was told that this was the remit of the ward psychologists who talked me through the fact that this wasn’t raised in the MDT, which I wasn’t invited to and that it wasn’t a matter of clinical urgency. Having pointed out that the side effects of the clozapine were having a significant impact on Geeta’s quality of life and offering to conduct an ADOS or to start gathering developmental history via ADIR I was told this was not within the nursing team’s remit.
Well at this point I realised that the gist of what I was reading was that as a mental health nurse it is not my job to question, it is not my job to think. My job is to just ‘do’. I also wondered whether this concept of MDT was just limited to a once-a-week meeting and questioned why I had thought of it as a continuum in care provision, adapting and shaping itself around the patient’s changing needs.
But as I am more than just my job title, I shall raise this question
Psychiatrists and psychologists, what are you actually treating?