What We Want from Adult Psychiatrists and their Colleagues: “Telling it like it is”

Sandra Bilsborrow
Barnardo's, Liverpool UK With Lynsey, Sue, Nikki, Tracey, Peter and Alan

Children and young people want professionals to listen to them, to talk to them and, above all, they want to be recognized as important to the parent they live with.

In November 1999 a small group of young people involved with Barnardo's Action with Young Carers (AWYC) were invited to take part in a conference launching the report “Keeping the Family in Mind” (Gopfert et al., 1999; Mahoney, Chapter 23). The project, like other Young Carer projects, provides a service for children and young people who live with someone with a mental health problem, many of whom take on caring roles and responsibilities. All of the young people who participated care for a parent with mental ill health and receive support from staff at the AWYC's project.

We know from research and consultations with children and young people that they value being listened to and drawing upon their own experiences (see Cookin, Chapter 21). They have some very important messages for professionals and policy makers.

Introduce Yourself, Tell Us Who You Are and What Your Job Is

Young people report that they are often ignored by professionals. They are not given information about what is going on in the family and who and why professionals are visiting. They way in which professionals deliver their service to a family can have a direct effect on other family members.

Have you any ideas what it feels like for a complete stranger to come into your home, ignores you and then blames you for your home situation?

Sometimes I remember coming home from school and walking into our living room to find someone I didn't know sticking a needle into my mum. They never introduced themselves but just continued to do what they were doing.

Tell Us What is Going to Happen Next

Young people do not always know where to go for services, get information or how they can be included in decision-making. They are unfamiliar with how agencies work and professionals need to take time to explain what is happening or the process and procedure required to make things happen. This helps allay anxieties and gives recognition of the young person's role within the family.

All the professionals would visit whilst I was at school I would come home and her medication would have been changed. I was the one who had to make sure she was taking her tablets but no one explained what they were or what they were for.

Give Us As Much Information As You Can

Children and young people want to understand and make sense of their parent's ill health. First, it is important that the information given is age appropriate. Second, this can be written or given verbally by professionals who have some knowledge and understanding and are able to answer young people's questions.

I feel if I had had more information about my mum's illness at the time, it wouldn't have been so difficult for me. I might have been able to understand why she cried so much and why she said and did such strange things. I might not have worried so much that I would become like her.

Talk to Us and Listen to Us - Remember it is Not Hard to Speak to Us, We Are Not Aliens!

Children and young people want to understand and be part of decisions made about their family. They want to be respected, included and acknowledged. Article 12 of the UN Convention on the Rights of the Child states children have a right to be listened to and have their views taken into account on matters that affect them.

I remember calling my mum's social worker and asking her to come to see my mum because she had started to become slightly manic. She came three hours later and by that time my mum's mood had changed again and she was calm. My mum's social worker came in and sat down. She didn't ask me what had gone on, she just asked my mum how she felt and my mum said “fine”. By 3am the next morning the police and ambulance had been called by neighbours. My mum was taken to hospital and put on a 6 month section (a compulsory order).

Ask us what we know and what we think - we live with our parents, we know how they are behaving - ask us!

The recognition of the role and support given by other family members needs to be valued, whilst acknowledging that without accurate information children and young people may not talk freely for fear of being separated from their parents.

Children and young people are an important source of information about their parent's health. It is a two-way process. They can also assist professionals!

Before my mum went into hospital, it felt like we were hiding and keeping the situation in our family, locked away. When she went into hospital, it was like an explosion. There were lots of people around us. I felt frustrated and confused.

Keep on talking to us and keep us informed - tell us it is not our fault

If information about what is happening is not shared then, for some people, this can leave them feeling guilty and to blame for their parent's illness. The young people are often given the responsibility of caring, but are not given the opportunity to participate in the decision-making.

One time the doctor came to see my mum at home. I opened the door to him and tried to tell him that my mum wasn't well. He told me he wanted to speak to an adult in the family. There was only me and mum and she was ill in bed upstairs. He went to see her and when he came back down, he handed me all her tablets and told me not to let her have any of them.

Tell us if there is anyone we can contact

The provision of information and access to services is an important factor in supporting children in the family. Professionals need to make themselves aware of ways in which they can assist supporting the young people and their families and other services available in the area.

Most of my teachers understood my reason for being away from school, but some thought that just because my mum was depressed enough to lie in bed and cry all day or be manic and throw everything from clothes to furniture out of the window, I still did not have reason enough to miss their classes, although I did try my best to get good grades and keep up to date with lessons.

Please don't ignore us - remember we are part of the family and we live there too

A recurring theme from young people is that other family members need support. Changes in practice, that cost nothing, can make a significant difference to the lives of these children and young people.

Two people arrived and sat beside my mum and dad. They did not introduce themselves to me even though I was in the same room. I heard them talking about my mum. It was as if I was invisible. I was glad when they went.

Previous personal accounts (Roberts, Chapter 20; Marlowe, 1996) also told of acts of thoughtlessness by professionals. Children, who had witnessed their parents' disturbed behaviour, added these experiences to their feelings of disregard. From the professional's point of view, these encounters often arise unexpectedly, either through routine interactions with a client with whom they already have a relationship, or while undertaking emergency duties without a previous relationship with the client. An individualized focus draws a boundary around the professional-client relationship which excludes the children, and therefore it is as if they are not present.

However, there is some evidence that some professionals use these momentary encounters to connect with children. Approved social workers in the UK have a statutory role under the Mental Health Act 1983. They must undertake a social assessment and consult the closest relatives and explore the possibility of any alternative to a compulsory hospital admission. Sometimes children are present, and some approved social workers make a point of explaining their role and actions to children, although a minority thought that they “were not allowed to speak to the children” (Webster et al., 1999). The social workers most likely to speak to children were parents themselves.

Many booklets are now available to help professionals explain mental illness to children (Falkov, 1998; Sobkiewicz, 1996 a, b), some of which emerge from local initiatives (Joint consultative Committee, 1999). They provide formulae for adults to develop a personalized story and for groups in which children can share experiences. With minimal notice, it is possible to create a context in which children feel contained, such as when helping children in a residential setting deal with parental suicide (Ward, 1995).

Conclusion

These messages reinforce the view that the direct involvement of service users and their children is essential to improve the quality and range of support to families living with mental ill health. Family members have diverse needs, and the impact of living with mental illness must be recognized, and risks assessed.

Many of the necessary changes are possible and some will demand resources; but what the young people highlight is the need for more fundamental changes of attitude and approach from services.