Reviewing the Mental Health Act from a patient's experience #mentalhealth
By Caroline Butterwick.
The Mental Health Act – the piece of legislation that means people can be detained in hospital and treated against their will because of a mental health condition – has saved me several times. But it’s also left me traumatised. Last year, the government’s independent review of the Mental Health Act published their report that made several suggestions to improve how people are treated at their most vulnerable. Mental health charities including Rethink and Mind have campaigned for these to be implemented but, a year on, nothing has changed.
It’s a hard thing to come to terms with, that being detained saved me, as awful as it was. The review of the Mental Health Act echoes this, in that service users often realise the protective nature of the Act and how it intervened in their life.
I was sectioned for being suicidal and twice for not eating for so long my health was at serious risk, meaning this restrictive intervention was the only option professionals had to keep me alive. But there’s so much that needs to change.
A theme that permeates the review is that being sectioned and spending time in hospital often strips patients of their dignity.
A mental health hospital is its own world. Even during my longest stay of two months, I never got used to the pierce of the emergency alarms, or to hearing other patients cry or shout, or to being behind a locked door. Having activities to take part in, a calm, therapeutic environment, and supportive staff who respect patients’ dignity can make a huge difference to someone’s time in hospital.
As if being detained wasn’t demoralising enough, being physically restrained by staff to take medication took away any sense of autonomy I had left. While now, recovered and with hindsight, I can to some extent understand the need for it, it doesn’t diminish the trauma.
There were some staff who would shout at me during restraint, as if I were a misbehaving child, rather than someone in acute distress. This further added to my sense of powerlessness, fear and was a strong demonstration of the power dynamics that are always at play on the ward.
Discharge from hospital
Mental health campaigners have often raised the issue of lack of support when patients are discharged from hospital. Sometimes I was discharged with no warning and it would be weeks until I had follow up support, leading to relapse and inevitable re-admission.
The number of psychiatric beds in the country has been cut over the past few years of government-forced austerity, meaning that sometimes staff prioritise discharging people even when they’re not ready in order to free up beds for new admissions. One time I left hospital on planned leave for the weekend, only to come back Monday to find my bed had been given to a new patient, meaning I had to be prematurely discharged.
Taking back control
One of the review’s key recommendations is that service users are able to choose who their ‘nearest relative’ is under the Act. Currently, the Act gives a forced hierarchy of who in a patient’s life is contacted and consulted about decisions to detain. This doesn’t take into account the person’s individual family circumstances. While this wasn’t an issue for me when I’ve been sectioned, I know that for many, the review’s recommendation to allow service users to nominate in advance who their nearest relative is will make a huge difference.
Similarly, another of the review’s recommendations is that patients have more of a say in their treatment. When you’re detained, you can be treated against your will – a terrifying experience. On one of my stays, I was prescribed a medication that, as a side effect, made my eyes periodically roll down so I couldn’t look up. It was a scary feeling, my eyes perpetually trailing the floor, so I couldn’t so much as watch TV or read a book. I told the staff but they dismissed my concerns and said that taking my prescribed medication was essential if I wanted to be discharged in time for Christmas, a week away. It wasn’t only the horrible side effect that upset me, it was the control: do what we say unless you want Christmas dinner in hospital.
It’s something that can be hard to define in legislation, that staff need to treat patients with compassion, but for me and many of the fellow service users I’ve met over the years, staff attitude can make or break.
The one time I was admitted voluntarily, a nurse said to me: ‘If you try to harm yourself while you’re here, we’ll just get rid of you.’ A cruel reminder again of the power they had over me and a lack of compassion. Another time, the paperwork that meant I had permission to leave the ward for two hours went missing, and there was no apology or sympathy when I was told – as I stood there in make-up and nice clothes, ready for a much needed evening out – that I couldn’t leave. There were many times I was shouted at when I was in distress, rather than being shown care.
That’s not to diminish the support of some staff, however, like the ones who’d chat to me about my interests, making me feel a bit more normal. There was the occupational therapist who spent hours getting to know me, crafting clay together or cooking vegetable fajitas. There was the activity worker who, knowing my love of writing, encouraged my creativity. There were the healthcare support workers who’d make me soya hot chocolate in the evenings as I curled in bed with a book, a routine that gave me some level of comfort and control.
Time for things to change
It’s a while since I was last in hospital – bar a short relapse at the end of 2018 – but I think about it often. I’ve had dreams where I’ve been running away from people, only to get caught. I’ll be in the work canteen and the warm smell of cooking reminds me of the dining rooms in the hospital.
I worry about getting unwell again, of being back in that environment, of feeling so powerless when I’m at my most vulnerable. If I’m ever back in that situation, it needs to be a more positive experience.
There are many things that need to change for people treated in hospital.
The changes suggested by the review of the Mental Health Act would make a huge difference, giving patients more control over their care. But that’s just the start. We need to see the government invest more in community mental health services so that patients are better supported to prevent hospital admissions needing to happen in the first place, and to be there to help people after an admission to stop a revolving door of hospital stays.
We need more mental health beds, so patients don’t have to travel hundreds of miles for one, finding themselves away from their support network. This will help too with stopping people being discharged when they’re not ready.
And, something that’s perhaps less tangible but so crucial, is we need staff that show compassion to patients, who take their needs seriously, who don’t belittle or bully. When I think about my times in hospital, the way I was treated at each admission is what stays with me.
The Act is an essential safeguard for those experiencing mental ill-health, but things could be so much better.
Author Bio: Caroline Butterwick is a writer based in North Staffordshire. She writes on a range of topics, with a particular interest in wellbeing, mental health, and ethical living. Her website is www.carolinebutterwick.com and she is on Twitter: @CButterwick
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