Schizophrenia has haunted my mum’s life – it’s time the Mental Health Act gave her the freedom she deserves

One of my earliest memories is Mum setting fire to the carpet in the living room of our house.

She wasn’t trying to hurt herself or take her own life. She was trying to keep us warm, because she couldn’t get the heating to work and we were cold.

Whether it’s using the wrong name for my 3-year-old daughter now, or keeping me off school when I was a child because she was convinced I was sick when I wasn’t, throughout my life mum has periodically been so unwell that she cannot keep herself or her children safe. My half-brother Sebastian was taken away from Mum, fostered initially but adopted when he was five. I have not seen him since.

Mum has schizophrenia, a mental illness that causes muddled thinking, delusional thoughts and changes in behaviour. These changes began when I was a toddler – prior to that, she lived an ordinary life as a primary school teacher in Luton, married with four children in her 20s.

The result has been that even as recently as 2016, it has been normal for mum to spend periods in mental health hospitals “sectioned” under the Mental Health Act. This is the law in England and Wales which compels people to be treated for a mental health condition without their consent. There were almost 50,000 detentions last year and currently there are over 21,000 people sectioned under its powers.

Some people think we shouldn’t have a Mental Health Act as they believe it is never right to deprive someone of their liberty because they are ill. I disagree. There is a clear need for an Act and as a Labour MP I believe it is the role of society and the state to protect, support and provide care for mum and everyone like her when they are at their most unwell and vulnerable.

The problem is that the Mental Health Act is out of date and out of touch with how a modern, grown-up society thinks about mental ill health. It isn’t doing enough to protect and care for the people subject to it. It doesn’t give people any choice or say in their treatment. It can cut significant family members and friends out of a person’s care. Forced medication and restraint are far too common. Most worryingly, research from the Health Service Journal last year showed a 57 per cent spike in sexual assault and harassment on mental health wards since 2013.

Coupled with underfunded community mental health services, we’re at risk of returning to the “bad old days” where people struggle to get support early enough, are detained under the Act after an incident involving the police or A&E and then receive poor quality care while detained that can cause more harm than good.

Last year there was an Independent Review of the Mental Health Act led by Professor Sir Simon Wessely that consulted widely with service users, carers and professionals. The government accepted several recommendations and committed to bring forward a new Mental Health Bill. A White Paper is promised by the end of 2019. In and out of parliament and on both sides of the House, there is welcome consensus behind the Wessely Review.

Implementing the recommendations of the Review would go a long way to restoring confidence in the Mental Health Act as a piece of legislation that is there to make sure people are looked after and treated with dignity and respect.

At the moment, if you’re sectioned then you have almost no legal say over the treatment you receive. If you are detained then you are likely to be very unwell, but you still have feelings and opinions and know yourself best.

One of the recommendations the government accepted was the introduction of “Advance Choice Documents” which would mean that for the first time an individual’s views, set out before they were subject to the Act, would carry legal weight and doctors would have to take notice of a person’s wishes for treatment.

One side effect of the medication mum took was vomiting. She was physically sick so often that she lost teeth. Medication has improved a great deal since mum was first diagnosed, so when she is well she should have the right to say that if she becomes unwell again she doesn’t want to be forced to take medication that will give her serious and unpleasant side effects, if there is another equally effective treatment that does not make her sick.

The number of detentions under the Mental Health Act has increased 47 per cent in the last decade, with people from Black African and Black Caribbean backgrounds disproportionately affected. Being detained for the first time is a very confusing and scary experience. People need to know that at that crucial moment they are going to be given as much choice as possible at a time when they may feel that control has slipped away.

We should be putting effort into ensuring rates of detention come down. We have to invest in community services and earlier interventions to stop people reaching crisis and being sectioned in the first place. This is better for the individual, their family and friends as well as being cheaper than inpatient treatment. But there will always be cases where people are so unwell that as a last resort detention is still necessary and, in those circumstances, only legislative reform will improve their experience.

Our home survived the fire and we covered the large burn on the living room floor with rugs and tables. My nan received help and advice from Rethink Mental Illness – back then the National Schizophrenia Fellowship. Living with severe mental illness is my family’s normal – sometimes mum is well and sometimes she isn’t. Now as an MP and legislator I am determined to make the Mental Health Act fit for the 21st century and I hope colleagues across the House will stand with me and with the thousands of families around the country whose normal looks like mine.

Neil Coyle is the Labour MP for Bermondsey and Old Southwark