Joanna’s elder daughter was diagnosed with ME when she was twelve. She became depressed and was seen by the Child and Adolescent Mental Health Service (CAMHS) but did not relate well to her counsellor there. She started cutting herself when she was about seventeen after she was discharged from the CAMHS and a relationship broke down. On two occasions her wounds were so bad that Joanna had to take her to A and E, where she was seen by a duty psychiatrist. Eventually she was given a diagnosis of bipolar disorder and borderline personality disorder. She went to university but had a breakdown in her first year and came home. Joanna has submitted a complaint to the NHS because it took several months for her daughter to be seen by a local psychiatrist and there was no continuity of care. Joanna also wrote to her MP, who contacted the head of the local NHS trust. Her daughter is about to return to university where Joanna hopes she will benefit from dialectical behaviour therapy.

Joanna was very worried when her daughter told her that she was self-harming. She thought she was a failure for not protecting her daughter from mental damage and felt guilt and blame that she had somehow been responsible. She went to see a counsellor through her work, who explained that people often use self-harm as a release and advised her to help her daughter by telling her about safe ways to cut herself. Joanna’s daughter told her that she harmed herself because she was so sad that she wanted to kill herself, and she wanted to do something to take her mind off killing herself.

When her daughter was first referred to the Adult Mental Health services Joanna was offered contact with a service for parents and carers. She decided not to take up this offer but to cope by herself, because she is a practical person and doesn’t like airy-fairy talk’. She says contact with the professionals treating her daughter was difficult because of confidentiality issues, though she understands the need for this. When Joanna wrote to them on her daughter’s behalf she would include a note signed by her daughter, giving permission for her mother to talk to the clinician, but sometimes there were bureaucratic barriers to communication. Joanna is extremely critical of NHS waiting times and access to services, and of letters written in jargon. At one stage her daughter was assessed five times by different health professionals before being offered suitable treatment.

Joanna says it was difficult balancing the needs of both her daughters. Her younger daughter is very protective of her sister, but also jealous of the attention she receives. She started burning herself with hair straighteners but did not tell her mother until much later because she didn’t want to add to her problems. She organised her own counsellor when she was seventeen and no longer harms herself.

Joanna had to take time off work to look after her daughter, but she works for a non-profit organisation and her managers understood her situation. She is a single parent and says that the whole experience has brought her closer to her daughter. There were also positive effects on her professional life, as in her work with young people who self-harm she is able to be non-judgemental and not scared. She did a MIND training course which was helpful. She can talk a bit about her circumstances to work colleagues, but doesn’t want to scare them with sensitive issues. Her mother knows about Joanna’s problems but Joanna says this isn’t helpful as she has to defend herself and her daughters. Joanna finds support through her counsellor, who she says is excellent, and through various internet sites, including MIND and Time to Change. She also finds prayer helpful in calming her, as she believes there is a plan and greater power that will see her through. She would like information that she could digest and understand for herself, and practical support, for example someone to sit with her daughter at night.

Joanna is still worried that her daughter might kill herself. She is exhausted by having to constantly prop up her daughter and admits that sometimes she is relieved when her daughter is away and there is peace at home.

To clinicians she says Include us, even though our children might be adults. Listen to us because we are there twenty four hours and okay, we might be over-protective, nuisance parents but we do carry pearls of wisdom that you can find. Just because we are not doctors.. we should not be dismissed because a lot of us are highly educated, observant people. Joanna advises other parents to give unconditional love and not to accept long waiting times for referral. Make a fuss. Seek help from various sources until you find what’s suitable for you. Don’t be pushed into groups‚ that you wouldn’t click with. It will be okay, you can carry on.