Always about me without me: being a patient who isn’t part of the equation

Always about me without me: being a patient who isn't part of the equation By Zahra Mental Healthcare in a Failing State “In my experience of current state systems of mental healthcare, being a ‘complex’ patient with intersectional marginalisations often translates to being a ‘difficult’ patient”

This summer marks 10 years since entering mental health services as a child. I am someone who is defined as ‘complex’. However, I have had little involvement in my care. I entered child and adolescent mental health services (CAMHS) as a child in foster care and had experienced lots of trauma. I am autistic and have ADHD. I am physically disabled, and I am also part of an ethnic minority. For my care to be acceptable and accessible, all these things needed to be accounted for. But in my experience of current state systems of mental healthcare, being a ‘complex’ patient with intersectional marginalisations often translates to being a ‘difficult’ patient, and I am left out of decision-making.

Last year I had five psychiatric hospital admissions under the Mental Health Act. I spent five continuous years, until March 2024, under secondary care adult mental health services until I fully disengaged. I was in a cycle where I was begging for help, which was refused based on having mental capacity, only to be detained under the Mental Health Act soon after – which may not have happened if I had been listened to earlier. When I informed mental health services that I was entering a mental health crisis, I didn’t receive any help until I had a Mental Health Act assessment. At this point, I was too far gone.

When I was discharged from a Section 3 last year, I was told there was nothing left for me in terms of treatment as I had failed two types of group therapy at the very beginning. But being autistic meant I couldn’t cope in groups – especially as I was told not to get to know other group members as we would be a bad influence on each other. My care coordinator told me they didn’t think I should be under mental health services, but my psychiatrist said I needed to be, which left me very confused. I asked for care that would work for me, but expressing my understanding of my difficulties was not enough. They created a formulation about me, without me. This was used to inform my care, but I never even saw it. I would hear snippets from it in ward rounds and appointments. I felt so sad because these snippets were categorically untrue, and led to me being refused treatment.

Throughout my time in services, I begged for reasonable adjustments that have been proven to work for me as an autistic person and I was refused these – despite them being part of new NHS England guidelines about meeting the needs of autistic adults in mental health services. I got the feeling I was viewed as difficult for asking for things that made mental health care accessible to me – I came to the realisation it never would be, and requested my discharge. On my discharge date, I was sent a blank neurodiversity crisis plan to fill out, stating all the things I had already suggested. I felt so angry.

Their final note to my GP stated I would be back under crisis services very shortly. It has been four months now without any contact with mental health services or emergency services. It doesn’t feel hopeful to think I will be back under services that have caused me harm, and these messages can act as self-fulfilling prophecies for those who internalise them. It has only been a few months since I was discharged, and I may well be under services again at some point, but I think I have exceeded their expectations. I have regained my freedom, but I am sad because I am not sure if I will ever be given the chance to recover from complex PTSD and I worry about the next time I am in a crisis.

I have found that services provided under current state systems don’t provide help when I ask for it. If I get to a point where I lose mental capacity or become subject to detention under the Mental Health Act, I am asked lots of questions about treatment, and it can even be forced onto me. At this point, the decisions I make are not necessarily ones I have thought through with a clear mind.

Since being discharged I have been proactive, and I have created an advance decision, advance statement, and reasonable adjustments plan to help me access healthcare. It would be useful for services to create documentation with patients about their care, and ways to make it accessible, when they are not in a crisis, instead of waiting for someone to reach a breaking point where decision-making could be impaired. This could also help to reduce coercive care which I have found to be re-traumatising, adding to the trauma I have already experienced.

This sounds bleak, but personally, for me, it is better to be realistic. At the age of 16, a clinical psychologist wrote me a letter mentioning that they were excited for me to start trauma therapy. Nine years later, I haven’t had any, but I expected that I would. I have found that holding onto unrealistic hope that I will be given the care that I need has been detrimental. It is unfair because nobody should have to contend with the fact they will never be treated for serious mental health conditions.

A supportive experience may be possible, but for that to happen, lots would need to change. If I were to talk to a mental health professional again, these are the things I would like them to know and respect:

  • Please be direct and realistic with me. Confusing and ambiguous communication is not helpful and makes communication difficult for me.
  • Please treat my access needs and reasonable adjustments as necessary – not optional.
  • Help me before I reach a crisis point and make plans with me for if and when I do reach a crisis point and struggle to make decisions.
  • Try to gain further knowledge about my difficulties, especially the ones you don’t know much about, for example being care experienced. You can ask me if I am in a state to do so. Or gain knowledge from those with lived experience.
  • Acknowledge all of my difficulties. For example, walking is very painful for me, and demanding I go for a walk is not helpful as pain will increase my distress.
  • Be compassionate. I am struggling insurmountably. Be kind. You might find me difficult and problematic. But trust me – I don’t want all these problems either.

Mental Healthcare in a Failing State

This blog has been published to kick off our upcoming series, “Mental Healthcare in a Failing State”. All the blogs in the series, when published, will be added here.

The call for pitches for blogs to be commissioned for this series is open until Friday 26th July 2024. You can find more information and submit your pitch here. We will contact you as soon as we can after the deadline to confirm if your pitch has been selected. Payment to writers of commissioned blogs will be £150.