Battles for diagnosis, lengthy waits for treatment, an over-reliance on drugs, and, frequently, an abject lack of compassion: this is the picture that people with mental health problems, their families and professionals paint of NHS mental health care. After the revelation that two-thirds of people with depression in the UK receive no treatment on the NHS, more than 600 people have answered a Guardian request for their stories – and they describe a system that is profoundly broken.
The incoming president of the Royal College of Psychiatrists, Prof Sir Simon Wessely, recently suggested people would be "absolutely appalled and screaming from the rooftops" if those going without treatment had cancer rather than mental health problems. Paul*, from Essex, a father of two daughters, has experienced those starkly differing standards. His eldest daughter was diagnosed with breast cancer in 2011 and had "exemplary treatment" on the NHS; she is now back at work and planning to get married.
His younger daughter, now in her late 20s, has had a personality disorder since her teens. "The effect over these years on all those close to her has been more catastrophic than having a daughter with cancer," he says. "With cancer there is treatment, support, counselling – basically whatever you need. With mental health there's next to nothing." She was once taken to hospital after trying to kill herself, and on another occasion was tracked down by police after going missing. She is unable to work. "From a societal point of view, the cost, which could have been avoided if she had the right treatment early on, has been massive," says her father. "And the human cost has been a wasted life."
Paul was one of hundreds who spoke about trying to secure an appointment with a specialist just to get a diagnosis. Colin, from Merseyside, is trying to set up a hub for people with autism and Asperger's as part of a small team, after being frustrated with the lack of NHS provision. "Right from the start, my GP said: 'If I had a pound for every time someone came in saying they had something they'd read in a paper, I'd be a millionaire' – which was an indication of the fight I had on my hands," he says.
Anna, from Stockport, says by the time her mother was offered treatment in March 2008, after many years of depression, it was too late. "She received a letter in October 2008 informing her she was now near the top of the waiting list. She took her own life in November 2008."
The nature of many mental health problems means even those seeking treatment may not be able to face getting help. Helen, from Leven in Fife, suffers from agoraphobia, anxiety and depression, and, like many readers, describes being penalised for being too ill to attend treatment. "Leaving the house to get treatment is sometimes too difficult to manage, and then the service – counselling, art therapy, CBT [cognitive behavioural therapy] – is taken away and offered to someone who is more able," she says. "The worse the state of your mental health, the more difficult it is to seek help and to receive continuous support."
Many are disheartened by what they see as an over-reliance on antidepressants and other prescription drugs. Peter, from Glasgow, was given drugs after being diagnosed with depression four years ago. "Despite various pleas to my GP that the pills were not helping, all he would suggest is that I kept trying with them," he says. Finally he was given eight weeks of CBT, but just as it seemed to be working, he was told it was over. "I now feel more hopeless than before, like I've exhausted my options via the NHS," he says.
While some readers speak positively about their experience of CBT, others describe it as a sticking plaster over an open wound. Rodney in Manchester, in his 30s, has had depression, severe anxiety and agoraphobia for more than eight years, and has had CBT four times, despite therapists saying it would not work for him. He has not, despite requests, been seen by a psychologist. "How can they do this knowing they aren't actually dealing with the issue?" he asks. "I've lost so many years of my life. Basically there is no hope with the NHS at the moment, no hope for people like me."
Readers' experiences, however, are not unanimously bleak: some tell stories of understanding from dedicated professionals who had helped them move on with their lives. Rodney says his "understanding" GP shares his frustration at the lack of treatment; Luka, in Gloucester, praises her "very supportive GP", whom she thanks for stopping her from "falling through the cracks".
Nina, in Wiltshire, started experiencing mental health problems when pregnant with her son, but received sustained help from her GP and health visitor, and a referral to a free counselling workshop, Lift Psychology. "The first one I attended was so good it was literally life-changing," she says.
But some of the most troubling stories concern the inpatient treatment of severely ill people. Mark, in Glasgow, describes a terrifying period in Southern General hospital in the city, during which he witnessed nursing staff desperately trying to cope with people with mania. He was attacked twice in two weeks: one patient cut their arms and another attempted to kill themselves. "The inpatient wards are not quiet places for healing, they are dumping grounds where vulnerable people are left to fend for themselves," he says. "Eventually, I managed to convince them to let me out as the environment was making me worse. What swung it after initial resistance … was asking the doctor – who was the first doctor I had seen – to tell me one thing about me, even my name, without looking at my notes. He couldn't."
Tamara, from London, says being sectioned "was more like punishment than treatment". During semi-psychotic episodes caused by bipolar disorder, she locks herself in her house to avoid being taken to hospital. "What I need more than anything is ongoing support and encouragement from a professional who understands me and my disorder well, without judging me as wrong," she says. "I often feel stigmatised, and the NHS seems to reflect many people's negative attitude towards people with mental health [problems]: that we are selfish and should pull ourselves together."
Those working on the frontline also express concern about a system that is underfunded and under increasing strain. "In mental health, patients who do not fall neatly into categories often fall between services and do not get help until they are at risk," says Dr Annie Hickox, a specialist in neuropsychology and mental health in Northallerton, North Yorkshire. "More psychological awareness [among GPs] would not only save money but would meet the needs of patients more quickly and more comprehensively than the fragmented services we have at present."
A psychologist in Staffordshire describes mental health posts being cut and remaining staff having their wages slashed: "We are also putting out bullshit about 'modernisation' and 'co-working' with service users. Translation: 'We do less, you get yourself sorted.'"
Almost every reader describes long, often very lonely battles to get the treatment they felt they needed. Alasdair went to his GP at university after having suicidal thoughts. After four weeks he saw a psychiatrist, and later, after repeated requests, a psychologist who addressed the root cause of his problems.
But his brother, Euan, who also had mental health problems, had a very different experience. After being given various drugs, he started taking overdoses. He lost his girlfriend, home and job, before being housed in a B&B, where he was visited weekly by a community psychiatric nurse. When he requested outdoor activities, Euan was told he was too unwell and respite care, after the death of his grandfather, was also refused. Alasdair, now 28, describes what happened next: "That day he [Euan] took a fatal overdose, which A&E knew about but classified as non-serious," he says. "He returned home by bus on his own and died in his bed the next day from the effects of the overdose." He was 26.
* Some names have been changed
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