Mary is a nurse and has helped with the care for her son, who was diagnosed with schizophrenia in 2007.
Mary’s son first became unwell in prison in 2004. He had an acute psychotic episode in 2007. Mary has struggled to get a diagnosis for her son and was shocked at the care he received in the hospital. Her son is now stable and living independently.
Mary describes the relationship with her son as always very good; he would ‘always sort of come and tell you if things had happened’. Mary’s husband left when her son was aged 15, and she said that it ‘really affected him’; she put this behaviour down to ‘adolescent shenanigans’. He got into smoking dope, and Mary doesn’t know whether he had depression and then starting smoking dope or the other way around. She describes how once after a girlfriend left him he put his head through a window and cut his neck with a piece of glass. Mary talks about the first time he ‘became psychotic’ when he went out drinking and ‘never [thought] of the consequences’. After a crack-down on anti-social behaviour, she describes how her son was involved in an incident and ended up getting a prison sentence. She talks about how, when she went to visit him in prison, he would begin to imagine things were going on’ he told her that people were listening through ‘things in the ceiling’ and that they were ‘always watching you, and listening to what you were saying’. After this, the family contacted a probation officer, who contacted an in-reach team in the prison. Mary says she was told that he shouldn’t be in prison but in a hospital. It took them 6 months to transfer him to a hospital, where he was placed in a secure unit for nine months. She thought at this time he had been diagnosed with schizophrenia, but on reflection realises he wasn’t, as she remembers the consultant telling her that her son had had a psychotic episode brought on by the stress of being in prison. Mary describes how he was ‘ok’ for two years and then in 2007 he was ‘fine one day and the next day he was beginning to get psychotic’. She recounts how she was called back from a weekend away as a friend of her son said that she had seen him ‘standing outside his flat talking about God’ and felt she had to let Mary know. She persuaded her son to see a doctor, who then said he needed a mental health assessment, which came 48 hours later. Mary said that she had a ‘dreadful’ experience as, although her son said he would go to hospital, the police took him in the back of a van. After he spent two days in hospital a consultant said that ‘he wasn’t mentally ill’ and Mary could take him home. Mary told the doctors that he wasn’t well but they discharged him from the section. Less than a week later he was ‘really poorly’ again. Mary talks about how he was ‘talking to himself, laughing to himself, imagining all sorts of things and being overly religious’. Her son had to have an emergency operation for a pilonidal sinus and Mary describes how she got no help. After the emergency surgery, the anaesthetic affected his mental state and care in surgical wards was very poor; mental health patients got poor care and little understanding. Gradually throughout the night he got more and more unwell, and eventually she says that he ran out of the house. Mary felt that she had to ring the police because she was ‘afraid that [other] people would ring the police’. Then Mary and her son experienced a ‘rollercoaster of bad care’’ she describes how he ‘just lay about in the dirty dressing’ from the operation. She had been told to take him to a GP to attend to it, but was told he couldn’t leave the ward. He was then transferred to another ward and managed to access his passport, which Mary had given to the ward for secure keeping. He tried to leave the UK from various different airports and ended up in hospital overnight in another part of the country. Mary was dissatisfied with the range of medication he was given. Later, whilst under the care of a community team, he managed to board a plane and was in another part of the UK in a hospital for a month, and Mary worried that he had no visitors.
Eventually, the team had to escort him back and he was admitted to a ward near the home. Her son was attacked by another patient, and he fought back. He had been unwell the night before; the staff knew about this but didn’t provide any extra medication or observation. Mary was asking the staff to consider Clozaril as the two anti-psychotics her son was on ‘weren’t working’ and also affecting his eyesight. In the following months, Mary describes her battles with various wards both to get her son the right care and to get information. He transferred wards and was put on Clozaril, which initially seemed to make him worse, but then after a period of six months he ‘got better’. Mary paid for her son’s flat to be kept in his name so he had a familiar environment to come back to. He is now living in the flat and Mary thinks that the community team are ‘the best team that he’s been under’ as they ‘understand his condition’. She says that he is ‘integrating quite well’ and he is picking up old friendships. Mary says that he will never smoke dope again has gained a considerable amount of weight. Mary went to a number of support groups and the best one was run by Rethink, attended predominantly by mothers who had sons who were diagnosed with schizophrenia. Mary found it hard not to ‘focus completely’ on the care of her son and is now spending more time doing other things, whilst still supporting him. She hopes that if he gets unwell again he will recognise it; if not, that services will listen to her and his care will be better and quicker than it was before. She feels that if mental health services listened to carers and family, life would be much better for patients, staff and family carers as families know the patients better. She wonders why there isn’t more preventative care as it would be better for patients and save the NHS a lot of money.