Increasing numbers of children and young people who have long-term difficulties with their breathing are using a mechanical ventilator to help them breathe. Doctors and nurses usually refer to these young people as being 'ventilator dependent'. Jane Noyes from the University of Salford has carried out a small-scale, in-depth study exploring the views and experiences of 18 young 'ventilator dependent' people of their health and social care, education, and their aspirations for the future. Parents were also interviewed. The study found:

• Interviewees were not always receiving the rights and services set out variously in the United Nations Convention on the Rights of the Child (1989), the Children Act (1989) and the Patient's Charter (1992, 1996).

• The young people and parents interviewed did not always have access to information they needed and were frequently excluded from making important decisions. Interviewees expressed a great deal of frustration at the way professionals treated the young people.

• Interviewees had spent prolonged periods of time in hospital when they no longer had a medical need or wanted to be there. Young people and their parents felt that the system of discharging young people from hospital was disorganised and inefficient. 

• Care packages enabling the young people to live at home varied widely and were not based on individual need. Not all young people had their care packages reviewed regularly, even though their needs were likely to change over time.

• Interviewees felt that little work had been done with the young people to prepare them for transferring to adult services or preparing them for adult life in general.

• Young people in this study felt they were frequently deprived of an adequate education and access to extra-curricular activities.

• Young people generally found it difficult getting out and about and meeting friends. Interviewees wanted support to explore their sexuality and engage in friendships and relationships.

Background
Over the past two decades new portable mechanical ventilators have been developed for young people with long-term breathing difficulties. These technological advances make it potentially possible for young 'ventilator dependent' people to live at home with their families. In order to be discharged home and enjoy life, young 'ventilator dependent' people need access to well co-ordinated and effective health, social and educational services. This study explores the views and experiences of 18 young people (aged 6-18 years) who use assisted ventilation, regarding the care and services they receive, and their aspirations for the future. Parents were also interviewed.

The Department of Health has recently acknowledged (Bridge to the future, 1997) that the care and services provided for young 'ventilator dependent' people have developed in an ad hoc way. NHS Regional Executives are beginning to explore ways of commissioning more appropriate and effective services. The new Government 'Quality Protects' initiative (1998) aims to transform children's services for those young people defined under the Children Act (1989) as being 'in need'. This initiative will include the services local authorities provide for young 'ventilator dependent' people. The findings of this study have particular relevance for commissioners and providers of health, social and education services who will be developing and implementing action plans for these initiatives. 

Rights under legislation
The involvement of young service users in planning has been a key development of the last decade, officially endorsed by the Children Act. However, interviewees had not been involved in determining the services they required. In addition, many of their rights outlined in the United Nations Convention on the Rights of the Child (1989) had not been respected or upheld. The United Kingdom has ratified the Convention, but it was evident that health, social and education departments have not fully implemented the Articles, specifically those relating to: 

• basic health and welfare
• housing and social security
• civil rights and freedoms
• the family
• education, leisure and cultural activities.

The young people and their parents interviewed were not always aware of these rights. 

Standards of care
Parents' and young peoples' rights regarding their health care are outlined in the Patients Charter (1992, 1996). Many families described examples of health care that did not meet these nationally agreed standards; for example, one child was sedated for a scan without being attached to her ventilator and suffered a respiratory arrest. Young people found it difficult to access appropriate services; for example, many rehabilitation services for people with spinal injuries did not admit those young people who used assisted ventilation. In addition, the health and social care provided by different regions varied widely. Young people were transferred to a number of NHS hospitals for treatment and rarely had continuity of care. Some young people felt they had received incompetent care and treatment. 

Not all hospitals provided appropriate play, recreational activities and a programme of rehabilitation. Young people usually lived on a diet of TV and videos in hospital because there were few suitable alternative activities. 

Some young people and their parents also felt that resources were handled inefficiently:

One father said: 'They leased the ventilator for the first 4 years. I worked out they was paying £85,000 for equipment.' (This was £85,000 to lease a ventilator that would cost less than £10,000 to buy) 

Access to information and decision-making
Both the UN Convention and the Children Act outline the child's right to information, freedom of speech and to be involved in all decisions that affect them. 

Young people and their parents did not always have access to information they needed and were frequently excluded from making important decisions about their lives. There was a great deal of frustration at the way professionals treated the young people. Young people felt that the NHS assumed an ownership of them and that they had no voice.

One young person explained how he felt about doctors and nurses. He said: 'They [doctors and nurses] tell you a lot more when it is quiet [and] ... sometimes they don't ask me.'

Young people did not always have access to a communication system that suited their needs and they could not freely express their views. They did not always have contact with people who understood the ways they communicated. Young people and their parents said they were frequently not respected, listened to, or viewed as experts on their own situation. Parents felt that their children were on occasions reduced to object status, especially in meetings.

One young person said: 'What kind of human treats other humans like that?'

The Children Act outlines that young people who do not live with or have contact with their families should have access to an independent advocate. In this study three of the eighteen young people who did not live with their parents were not appointed an Independent Visitor or an independent advocate. 

The Children Act and Patient's Charter also outline that services should be open to effective independent representations and complaints procedures. Almost all of the parents had made at least one complaint but they felt that complaints procedures were generally inadequate. They mainly resorted to using the media and their Member of Parliament to get things done. 

Discharge home
None of the young people interviewed wanted to be in hospital:

'I didn't want to be there any more (hospital). It's nice to be at home, it's nice to be with my mum and it's nice to be with my sister.'

Almost all the young people in the study had spent many months (in some cases years) in hospital when they no longer wanted or needed to be there. Many families felt that young people had remained in hospital longer than was medically necessary. The young people said they were very frustrated at the way they had been treated:

'I am disabled therefore I am not normal, lock me away from the real world so I cannot be a part.'

Interviewees felt that the NHS, social services and education authorities were generally inefficient at discharging young people home. One parent said that:

'We had meetings and meetings and meetings that got nowhere. Social services live to hold meetings and produce paper.'

Care packages
A package of care and services needs to be set up locally to enable a young 'ventilator dependent' person to be discharged from hospital and live at home. Evidence from interviews with young people revealed that their care packages varied widely and almost all parents said that the system was not fair:

'They don't seem to assess your child's individual needs.'

Furthermore, the needs of young 'ventilator dependent' people change over time. However, interviewees' care packages had not always been reviewed regularly and, if reviews did take place, young people and their parents were not always invited to attend. 

Respite care
Department of Health guidelines suggest that provision of respite care should be included in the overall package of care. Parents interviewed said that taking a break was absolutely essential, but they felt that facilities for, and provision of, appropriate 'respite care' were totally inadequate. 

One mother explained about her son's respite care: 'We had been using the hospital [for respite care] and that wasn't ideal ... we rarely used it because I wasn't happy with him going in there.'

Housing 
Almost all of the young people had been accommodated on a long-term basis in health care settings which were unsuitable to their particular needs and not inspected by social services departments. Nine young 'ventilator dependent' people lived at home in unsuitable and unsafe housing. Their needs had changed over time and yet little reassessment had taken place. Interviewees described not being able to: use their electric wheelchair in the house as there was insufficient room to manoeuvre; go through doorways as they were too narrow for a wheelchair; use the kitchen as it was not adapted; some could not have a bath as there was no hoist or the bathroom was too small; and some could not go upstairs as there was no lift.

Contact with family
Parents continue to be responsible for their children when they are in hospital. However, not all parents were offered on-site hospital accommodation to stay with their children. Interviewees felt that professionals did not always actively promote or support the young person's right to live with their family. 

Young people said they were not always consulted about continued contact with their parents and siblings. Those young people who did not live with their families were uncertain of their own family background. One young person did not have essential memories maintained for him; this young person did not have a life-story book or memory box (containing precious possessions from his birth family). His memories of his birth family (especially his siblings) were fading and despite expressing a wish to maintain contact with his brothers and sisters, he no longer knew where they lived. Some young people were losing contact with their language, religion, culture and roots. One was no longer able to speak his first language fluently. He explained that he could sometimes understand what his family was saying, but not always. He said:

'I tell my brother to say it in English.'

Young people who lived in residential accommodation said they felt that they did not belong to their families any more.

Families felt that many of the professionals who worked in or visited their homes intruded on their privacy. Families said that: they were not listened to; they did not like having a constant stream of professionals calling at the house; they did not like the unreasonable behaviour of some professionals, who, for example, stole food from the family kitchen.

Preparations for adulthood
As young 'ventilator dependent' people grow up, preparations need to be put into place for a smooth transfer to services commissioned for adults and adult life in general. There was little evidence to indicate that health, social and education services had done this:

'Nothing has been put into place yet. Obviously they will transfer her to somebody - but who and when we have no idea.' (parent)

Education
The Education Act (1981) made local education authorities responsible for assessing and meeting special education needs provision. Young people in this study felt they were frequently deprived of an adequate education because they had spent prolonged periods of time in hospital and when they were discharged, they could not always find a school that was willing to accommodate their complex needs. For example, one young person who attended a mainstream school was disappointed at the lack of suitable clubs and activities. The school provided sports-related activities, whereas his interests were chess and astronomy. His mother said: 'They are not geared up for him É' .
Some of the young people expressed the desire to go to university and take up meaningful paid employment. 

Leisure and cultural activities
Young people generally found it difficult getting out and about and meeting friends. Because of this, they did not always feel a valued part of society. Young people wanted support to explore their sexuality and engage in friendships and relationships. One young person explained that he would like to meet a girl but felt his needs were compromised by the constant presence of his carers. He said:

'Well, you can't really have a girlfriend if you have got nurses pulling you along.'

Social security
Young people are in theory eligible for a number of benefits such as the Mobility Allowance. Some young people in this study felt they had been denied benefits because the application process did not take account of their individual unique circumstances. For example, one young person was refused the Mobility Allowance as she could walk. Her father felt that this was not fair as they could not get out and about because of the volume of equipment required. 

Good practice
Although young people and their parents were generally negative about their overall experiences, they did highlight some examples of good practice. It was evident that these young people had received life-saving treatment. Individual doctors, nurses, teachers and social workers were said to be excellent. 
Young people and their parents offered many suggestions as to how care and services could be organised and managed more effectively. These included the need for: commissioners and providers of services to listen to young people and their families; a national policy to establish who is responsible for funding care; an inter-agency discharge policy; a key person to co-ordinate their care; and regular reviews of care packages.

Conclusion
There was strong evidence that a significant number of rights of young 'ventilator dependent' people were not respected or upheld. In addition, the young people and their families interviewed said they wanted to be placed at the centre of decision-making and in charge of their own lives. The researcher concludes that health, social and education services provided for young 'ventilator dependent' people and their families need to be jointly re-organised and more efficiently managed.

About the study
The study comprised of 2 main elements: 

• A comprehensive literature review which is published as a separate document to the main report.
• Thirty-four in-depth interviews conducted with 18 young people who use assisted ventilation. The parents and siblings of 15 of the young people also participated in the study.

The young 'ventilator dependent' people were contacted via seven NHS Consultants. Young people were selected to reflect age, gender, ethnicity, level of need and location. Innovative methods were used to interview young 'ventilator dependent' people, some of whom had a range of communication impairments. 

The literature review, Voices and choices of children and young people who use assisted ventilation: Bibliography and analysis of the literature by John Sudbery and Jane Noyes, is published by the University of Salford, and is available from The Administrator, Institute for Health Research, University of Salford, Manchester, M5 4WT (price £6.95 plus p&p).