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Growing up gracefully

For children with long-term conditions, providing coordinated and consistent care is crucial to improving quality of life. Denise Roberts finds out more.

As every parent knows, children are a challenge. Caring for them and supporting them is a life-long task: daunting and tricky, yet loving and ultimately rewarding. Managing the care of children with long-term conditions is equally challenging. And as health practitioners in paediatrics know, this particular type of care presents a unique set of ever-changing hurdles.

As with adults there is a need for patient information and coordinated care to support patients towards self-management, but children's needs fluctuate more than adults' needs, as different ages bring different issues. Young patients grow out of equipment, and their care will at some point make the transition from paediatric to adolescent and then adult services. Their psychological and social needs are different too, and adherence to treatment can be lower.

Jan Scott is a rheumatology physiotherapy specialist at Birmingham Children's Hospital. Working in paediatric rheumatology, she sees patients with long-term conditions, such as juvenile idiopathic arthritis (JIA) and other rheumatological diseases from an early age. She comments: 'The challenges from an AHP [allied health professional] management point of view are to ensure that they are treated in an age appropriate way: that their treatment is modified as they get older, both in terms of expectations of home exercises programmes and also in their understanding of their disease and management.'

On paediatric self-management, Ms Scott notes: 'Patients are encouraged to take a full and active part in their own management, whatever their age, and are encouraged to develop psychosocially along with their peers.' She adds: 'For this reason it is essential that they are managed by a multidisciplinary team.'

Empowering from an early age

Self-management is a key focus of the NSF, and is one of the areas where children have different issues to address. Not only must children learn to become independent in managing their condition, they must do so alongside normal physical and psychological development needs. Physio Liz Hardy's background is in acute paediatrics where she sees children with long-term conditions, such as cystic fibrosis and JIA. 'There are issues around the ability to function independently,' she comments. 'They need support for activities around daily living. A child with arthritis may need support with brushing teeth, but there are other needs and hidden problems.

'A child's exercise tolerance may be impaired, or they may need intensive management. For example, with cystic fibrosis, patients may need to use a nebuliser, have physio for 20 minutes a day, take food supplements or have other dietary requirements, and these all impact on quality of life and the ability to fit in with peers and have as normal a childhood as possible.'

She continues: 'There are issues around body image, too. Lots of children with juvenile arthritis have asymmetrical or delayed growth and particularly while going through puberty these will also have an impact on the kind of life they lead.' The concept of 'long-term' has a different meaning for children. Mrs Hardy points out that children with cancer, or brain, bone or soft tissue tumours, have conditions that are not long-term in terms of years but are long-term if you are a child. 'Lengthy periods of treatment can feel long-term over two to five years and have more impact if you are 10,' she says. 'Then treatments such as radiotherapy and chemotherapy happen at times when you are becoming independent and starting new schools. You miss out on development stages a child would go through and that then has an impact on future life.'

Mrs Hardy adds that children have different needs for emotional support and their adherence to treatment can be more difficult. She explains: 'They don't have a view to see what would happen if they don't have treatment. So motivation to continue treatment, supporting families, getting children to adhere - these are all areas of huge conflict in families.'

Sourcing resources

Provision of equipment is one of the issues flagged up in the recent national service framework (NSF) for long-term conditions. NSF quality requirement seven highlights the need for access to equipment and accommodation to maintain independence. Yet equipment provision is not always as timely as it should be. Not surprisingly, equipment provision, and its funding, is a particular problem in paediatrics - where there is a constant need for equipment to be replaced as a child grows. Sue Paddison is a superintendent physio based at the Royal National Orthopaedic Hospital's spinal cord injury centre. She says: 'Some of the big issues are equipment provision from acute first episode discharge and then on in the community during life. It's a classic postcode lottery.' This, she notes 'is totally unacceptable'.

Unfortunately, paediatric provision problems do not end here. 'We have found it easier to sort things initially with a good discharge package,' Mrs Paddison explains. 'But from home there can be real problems accessing equipment in a timely way. We manage this "by hook or by crook" using contacts and charities; we send out letters to primary care trusts, GPs and charities - both our own and outside charities. It is a lot of running around and that is what I hear from lots of colleagues.' She says this is made worse because services are fragmented across health and social services and funding structures are not in place. 'A lot of time is wasted by lots of us trying to sort out packages and listening to lots of people saying, "that is not in my budget",' she notes.

Bridging the gap

Coping with the transition from being a child to an adolescent to an adult is tricky for any individual. Sadly, it is all too often made more complex for children with long-term conditions as they and their carers struggle to negotiate the gap that often exists between health and social care and educational services. This gap can be evidenced in terms of funding or equipment provision difficulties, but it is also about the responsibility for physical management moving from the parents to perhaps school and through to the young person themselves.

These transition periods require support and coordinated care. And as Jan Scott notes they do not happen overnight. She explains that at Birmingham Children's Hospital, transition plans are put into place with a multidisciplinary team, which includes physios and occupational therapists. They work very closely together so every member of the team knows where patients are in their transition process; including which issues are covered and which are not.

'Transitional care can start from quite young, at around 11, and continue up to 18 before a young person finally moves to adult care,' says Ms Scott. 'It will include early, middle and late plans and at each stage goals are agreed for the patient. 'So it's not just a case of now you are this age. It takes years to get to that stage as we help them become good consumers of the health service. They are able to have independent visits to clinics and can speak out for themselves. They are educated around disease management and able to make informed choices about treatments.'

Ms Scott adds that over that time parents are also weaned away, but they too are supported as they give more independence to their children until they are confident their child is able to manage. 'It's not just about drugs and joints, but all areas of their life as well, their psychology and school,' she says. Sue Paddison highlights how the problem with equipment provision, maintenance and replacement is even more acute during transitionary care because of the way funding pockets work. 'In community care there are big black holes that make this difficult,' she observes, noting that she would like to see this addressed too. She comments: 'Some evidence shows our patients disappear from the system as they make that transition to adult care. Once that is completed they will have one final visit with us to see how they got on and evidence after that point shows they just disappear - so they are not always happy with adult care but it is difficult to find out what happens.' Despite these problems, Mrs Paddison is optimistic about what can be changed. She believes the NSF's ethical theme in terms of holistic care, spanning the social, physical and emotional, is a strength. 'Looking at the national services framework review, it has a very broad remit,' she says. 'It looks at qualitative changes and it is offering an opportunity to identify what people want and need and how to deliver that.'

She adds: 'If honoured, it [the NSF] will be a real step forward.' This is something we all look forward to, children and adults and practitioners and patients alike.

Maximising function

Posture management is a growing area of support in caring for children with complex long-term conditions. 'It is a relatively new science that raised its head in the last 20 years,' says Rosie Yarnall, a superintendent physio working in paediatric services. 'It's not just about children but looks at those with complex physical needs, who can't move easily. The idea is that throughout a 24-hour day they are put into positions to enhance and maintain their physical abilities.' Posture management, she notes is a person-centred approach and 'is vital for managing any long-term neurological condition. It's about minimising deterioration and maximising function.'

Postural management equipment may include a sleeping system to position children comfortably at night while maintaining their posture, a standing support, special seats and adapted cycles. Equipment is not designed to restrict a child's movement but to act as a starting position for movement and activity. Assessment for postural management programmes is crucial to ensure that provision of treatment and equipment is used to increase a child's level of ability. A range of assessments is needed such as physical ability, x-rays, pain, sleep history and function.

'Research suggests that early intervention with postural management programmes prior to the development of deformity can improve a child's posture and function and reduce deformity,' says research physio and CSP research advisor Dr Terry Pountney. She notes that if children with cerebral palsy are positioned well from an early age it helps them to improve their posture and muscle control. The outcome is that they can be helped to achieve more things for themselves.

A five-year longitudinal study investigating the effectiveness of postural management programmes in reducing hip problems in 38 children with cerebral palsy has just been completed. Previous studies identified that 58 per cent of children not walking at five years had hip problems. This study provided children with postural management equipment under the age of 18 months and followed their outcomes until the age of five years. Physical ability, use of equipment and hip migration was recorded.

The early findings suggest there is a significant reduction in the level of hip problems, and the numbers of children having surgery under five has reduced dramatically. Further funding will now allow this group of children to be followed for a further three years to determine longer term outcomes.

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