Looking for an ordinary life

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How can we best support kids with complex health needs?

This article describes some of the current issues affecting children and young people with complex health needs (who may also be using medical technology) and their families. It is based on work carried out by the Foundation for People with Learning Disabilities, in which nearly 40 children and families across England took part. We heard from them about the barriers to achieving an ordinary family life and what they were doing to try to overcome some of these obstacles.

Who are we talking about?

Many of these children will be using medical technology to keep them alive. The most common forms of medical technology the children are using are: oxygen ventilation; tracheostomy and oxygen therapy; and being tube fed, for example through gastrostomies and intravenous drug therapies. Although there is no accurate UK data on this group of children using medical technology, Glendinning et al. (2001) estimated there were around 6,000 children in this group. The group are also very diverse, as described by Kirk and Glendinning (2002):

  • the cause can be congenital, genetic, through an illness, accident or prematurity
  • the age at onset can range from premature birth to adolescence
  • the duration ranges from months to lifelong
  • the prognosis and life expectancy vary, along with the incidence and severity of associated disabilities.

There are a number of key issues currently facing this group of children and young people.

Increase in numbers

Children who are technology-dependent or have complex health needs are growing in number and more are living into adulthood. Ludvisgen and Morrison (2003) reported a 77 per cent increase in the number of children who are oxygen/ventilator dependent from 1997 to 2000 and Townsley and Robinson (2000) reported a 60 per cent increase in the number of children who were tube-fed over a two-year period.

The right to an ordinary childhood

As well as their health issues, these children face multiple barriers in order to exercise some basic childhood rights, including communication, independence, friendships and leisure opportunities. Research by Townsley and Robinson (2000), and Townsley et al. (2004) showed that families had difficulties in finding and organising social activities for their child and “the system” did not support their desire to do things as a whole family. These children are not only fighting to stay alive, but they also have to fight for the opportunities to do ordinary things that others take for granted.

When we asked families what would improve their quality of life, they often wanted support with really practical issues, such as travel arrangements, day-to-day mobility issues and having a greater say in their child’s package of care.

What makes an ordinary life?

Keeping things joined up

Children with complex health needs are usually in contact with a whole range of professionals, yet it is very rare to find a family who say they have someone who can join all these up for them. Key workers can help to reduce this stress, help parents to navigate through the system and help them to plan and get the right support for their child. National policy has promoted approaches such as the use of key workers, navigators or the team around the child for over ten years and most councils claim to operate key working, yet today it appears that many families are still lacking such a joined up approach and some organisations that supported it are no longer funded (Limbrick, 2013).

Having the right home

Most children with complex health needs and their families will spend more time than their non-disabled peers at home. There are a number of issues to consider when ensuring that the home meets the child’s needs: it should, for instance, be warm and comfortable, it should have the appropriate aids and adaptations to keep the child at home and it needs space to accommodate the technology, equipment and supplies needed by the child. Some families have to move to find a home that will be more suitable as their child grows. This can cause considerable financial strain on the family and there can be considerable delays in getting adaptations made, for example, having a tracking hoist to take the child to the bathroom from their bedroom and/or lounge, transforming a room downstairs into a bedroom, or making the entrance wider to accommodate a wheelchair.

Being part of the community

Getting out and about and being spontaneous in a choice of activities can be more difficult for this group of children, yet many parents spoke of their great desire for their children to have a connection with their community. Families need to be informed about the various ways that obstacles to full participation can be broken down. For example, they need to be made aware of:

  • the Changing Places campaign (which highlights fully accessible toilets across the UK)
  • the various models of wheelchairs and seating available, which can make going out less of a chore
  • where they can go on holiday that will cater for the needs of the whole family.

Information and knowledge

Parents need to be better informed about their rights and about the opportunities available to their children. It is common knowledge that parents often rely on information from other parents, but this can be partial and patchy.

The kinds of information and knowledge required by families include:

  • their right to a carer’s assessment and an assessment for short-term breaks and what they can spend allocated funding on
  • their financial rights and the allowances for which they can apply
  • the assessment process and options around education
  • the right for some children and young people to have a personal budget.

Personalised support arrangements

The families involved in the project reported receiving support from a variety of sources. Some children were supported by the local children’s continuing care teams; in one area the team worked in a very personalised and flexible manner to accommodate the family’s wishes (including sending nurses or support workers on holidays with the family). Other families were trying out personal budgets and a few families were using the new personal health budgets.

Personal budgets have the potential to give the child or young person and their family more control over the kind of support and care that is appropriate for them. Those trying out the new personal health budgets showed that it was possible to:

  • improve links between home and school, especially if personal assistants can work between the two
  • fund specific equipment or therapies, such as wheelchairs, postural care support and sleep systems
  • give families greater say over who supports the child/family
  • ease pressures at transition to adulthood if the family keep the same support team.

However, the process does take time and it will only be successful if the family are supported along the way with people who are passionate about personalised approaches to care and understand the different options for managing a personal budget. We must respect the fact that not all parents want a direct payment or to recruit and manage personal assistants, but too many people still equate a personal budget (whether for children or adults) with a direct payment.

Personal budgets and the workforce

Whilst personal budgets may be the “next big thing”, one of the key areas of concern is having a skilled workforce available to care for these children and clear lines of clinical governance for workers who will be performing very specialist tasks. Some families with personal budgets have found it hard to recruit skilled staff, or have trained staff over months to work with their child only to find the person leaves for another job. Being a personal assistant to a child using medical technology can be very daunting, as it is necessary to learn how to use the technology as well as learning how to communicate effectively with the child and fitting in with a family unit. Those who have run a personal budget successfully can testify to the huge difference it can make to their lives, allowing for more flexibility and choice in how they are supported.

Conclusions

Children with complex health needs require a wide range of support to ensure they have the same opportunities as their peers. There is clearly some innovative practice happening across the country but the child and family requires a coordinated approach to achieve those things many of us take for granted.  For most children and young people, their families are their greatest allies and services need to recognise this and work positively with families, helping them to build their resources.

Further information

Jill Davies is Research Programme Manager at the Foundation for People with Learning Disabilities.

The work discussed in this article was funded by the Department of Health Voluntary Sector Investment Programme. Details of the project can be found on the Foundation’s website:
www.learningdisabilities.org.uk

References

Glendinning, C., Kirk, S., Guiffrida, A., Lawton, D. (2001) The Community-Based Care of Technology Dependent Children in the UK: Definitions, Numbers, and Costs. Manchester: National Primary Care Research and Development Centre, University of Manchester.

Kirk, S., Glendinning, C. (2002) Supporting ‘expert’ parents – professional support and families caring for a child with complex health needs in the community, in International Journal of Nursing Studies, Vol. 39 (6), Elsevier, pp 625-635.

Limbrick, P., (2013) CCNUK: The history and mystery of Care Co-ordination Network UK in England. Do you know more than I know? (accessed on www.teamaroundthechild.com on 01/05/14).

Ludvigsen, A., Morrison, J., (2003) Breathing Space: Community Support for Children on Long-term Ventilation. London: Barnado’s.

Townsley, R., Robinson, C., (2000) Food for thought? Effective support for families of disabled children who are tube fed. Bristol: Norah Fry Research Centre.

Townsley, R., Abbott, D., Watson, D., (2004) Making a difference? Exploring the impact of multi-agency working on disabled children with complex health care needs, their families, and the professionals who support them. Bristol: The Policy Press.

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