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Introduction
It is difficult for some parents and young people to look ahead. Often this is because coping to-day is so demanding that it takes up their whole effort. Sometimes, looking ahead is too painful and distressing. One mother wrote:
'You know how it is, you deal with the short term because the long term is just so difficult to even imagine.'
Some professionals can be too busy coping with their daily caseload of urgent things that they don't seem to have time to prepare the family for what lies ahead. Yet, the advice from most families and professionals who have passed through this maze is that you must look ahead, and be prepared for each stage.
When the child with arthritis starts to attend secondary school they are preparing for adult life. Like their peers, young people with arthritis endure the normal physical, social and emotional changes that occur during adolescence. However, there are additional challenges because of the disease, ongoing treatment and physiological impact of long-term arthritis. The material in this chapter is intended to help you think ahead, have take positive expectations and gives some suggestions about how you can support your child to look ahead with hope and realism.
Positive expectations for the future
The expectations of the young person, parent and schools influence what the young person can achieve in adulthood, and how they prepare for fulfilling adult life. Expectations for the future need to be realistic and clearly related to what the young person is good at. A young person who hates science at school is unlikely to become a career scientist, whereas someone who cannot write with a pen can use computer systems to enable them to become a successful writer. Parents, young people and professionals can together find ways to help young people achieve their ambitions. Young people may achieve far less than they are capable of when their families have poor expectations for the future.
Transition from dependent child to independent adult
The terms 'transition' or 'the transitional phase' are used by professionals to describe the process of dependent children becoming independent adults. Transitional care refers to services that help this process. The good news is that in the United Kingdom, there is growing recognition that the needs of adolescents are special, and that specialist transitional care services best meet the needs of young people in this phase[1]. In 2000, an important national project, sited at the University of Birmingham, began to research the needs of adolescents with juvenile idiopathic arthritis, and to develop national guidelines for specialist rheumatology services. This work is ongoing and on completion should bring about valuable improvements and standardisation, so that wherever they live, young people with arthritis should receive similar standards of specialist care.
Encouraging independence
Part of the transition process includes helping the young person to become as independent as possible with their personal choices, daily living skills and relationships. Some young people with complex health and social support needs will need assistance to express their preferences, so that the young person can take an active role in planning their future.
In most instances, the progress towards the young person gaining as much independence as they are physically capable begins with the parent being willing to hand over responsibility to the young person. In a recent report one young person wrote:
"If anyone were to ask me what message I might have for others I would tell them that they should listen to, believe and respect young people. In my experience it is very difficult to tell anyone how you feel when they won't listen; if you aren't believed then you stop believing in yourself; if you're not respected then you lose your self-respect and everyone needs self-respect."[2]
Checklist of positive ways to help your child
Here is a checklist of ways you can help you child grow in understanding about themselves, their illness, and their potential. Your response will depend upon the age of the child, but not necessarily upon the degree of arthritis they experience.
Decisions about which subject or courses to take at secondary are made in Year 9 for people aged 13 or 14. These choices will depend upon the child's abilities, interests and long-term aspirations. They form part of the educational transition process to help prepare young people for adult independence. Guidelines of how to help the education provider and young person with long-term illness or disability plan ahead are set out in the Code of Practice issued by the government in 2002. (See section: Specialist legal, benefits and education, advice, organisation page??) The new guidelines emphases that successful communication and transition planning involves a three-way process between parents, the young person and the school. Young people may need support to fully express their views and perspectives, and some parents need gentle help to share responsibility with young people. This is a new element in the guidelines and will be interpreted differently in different schools.
Details about this process is provided by the Centre for Inclusive Education or the Department of Education and Skills ( see final chapter for addresses and other sources of information and advice).
Local education authorities have a duty to provide education for children until the age of 16 (has to attend until the last Friday in June after sixteenth birthday). Education beyond this age is the responsibility of the Learning and Skills Council, which brings together further education, vocation and other adult education options. Young people are entitled to full time education until they reach 19.
Young people communicating their own health needs For most young people, the gradual road to independence includes learning to look after your own health needs. It is important that young people where possible, develop their own skills, relationships and confidence when speaking to service providers. Young people with arthritis have to learn to communicate their heath needs, but this is not always a straight forward process:-
"I have found that even the most informed doctor or health person cannot provide the most basic of information, if you don't phrase the question in the right way. It's frustrating because often you don't know the right question to ask. When I had to deal with the last problem which didn't seem to have a solution, I asked the doctor what the possibilities were, and this got a much better response".
and
"A lot of research is hit and miss. It's hard finding the right person to ask. We often just have to do the research ourselves, by asking other parents, looking up the internet, contacting disability groups and reading medical papers in the library".
The health care in this chapter mainly refers to care received within the hospital, either as an in-patient on the ward or as an outpatient in a clinic. There are other services in the community. Sometimes there appear to be overlaps and gaps in care delivered in different communities, and each health authority operates differently. There may be periods when the young person is attending children services for some things, and adult services for others.
For some families it is a shock to find that the specialist paediatric services that they had relied on in the past are no longer available to them. Some parents and young people may find these changes shocking and stressful. Being fore-warned about the transition arrangements of the services your child attends will help you prepare yourself and the young person to adapt to the new situation. For example a young person with a joint problem may have been seen on the same children's ward throughout their childhood, but once sixteen the young person with the same problem has to go onto a general hospital ward. The majority of other people on such wards may be elderly. Some families continue to find that once the young person is too old to attend services for children, some therapies and important services are more difficult to replace.
"We have found that some of the health services we were used to getting for our children were not so readily available for them as adults such as physiotherapy and speech and language therapy services. Some services stopped once they left school. They can also lose the very specialist healthcare services they were used to getting when they were using paediatric services."
As is the case with probably most teenagers, parents often have all experienced problems trying to encourage young people to lead healthy lifestyles and take more responsibility for their well-being. Attention to what they eat and drink, how much physical exercise they choose, what drugs they do or don't take and how they manage their anxieties and emotional lives may have caused concern at different times. It can be hard sometimes to encourage them to take responsibility for creating a good lifestyle for themselves, particularly when it can seem as though there are few options or choices.
An early step may involve the parent asking the professional to direct their questions to the young person. Some professionals may be so used to addressing the accompanying parent that they need firm prompting to direct their questions to the young person.
A minority of children who have long term arthritis may find it increasingly impossible to manage stairs at home, get in and out of the bath or even get up to their front door. Sometimes caring families find it difficult to look ahead but the young person will become heavier to carry, or help, while they will want to become less dependent upon parents. Changes to facilities at home can ease the care work for the family, and enable the young person to have more age appropriate independence. For example putting in a downstairs toilet, or fitting a shower into a downstairs bedroom enables the young person to wash and groom themselves without struggling up the stairs to use the bath or toilet.
Before things get impossible think about some changes within the home that may help. In the long term, adaptations within the home will make life easier for the young person and those who physically care for her, and enable you to continue caring for her.
Contact the Social Science Care and Health Department of your local authority (formerly social services). Ask for an Occupational Therapy assessment and explain why you need help. Provision for this is under the NHS & Community Care Act. In the short term, getting adaptations built takes many months, many meetings and a lot of hassle, but can radically ease the daily struggle for the whole family for many years.
Under the Housing and Regeneration Act 1996 there is a mandatory grant from the local authority for work or equipment up to the value of £20,000. It is dependent upon the Occupational therapists assessment, the individual's level of need and the long term nature of the problem. The needs of each person should be fully addressed within the process, for example, carers often develop back pain and better facilities can significantly ease this by reducing the help needed to lift the young person.
The decision to award the grant may take many months and the negotiation to agree the final design and building scheme also takes a long time, frustration and a lot of energy, but those who are successful feel the process is well worth this serious disruption.
If the Occupational therapist's assessment shows that the equipment or changes needed will cost more than £20,000 then it is possible to apply for an additional discretionary grant from the local authority. This is means tested, but still available for people receiving 'a reasonable income'. A contract is formed between the applicant (or parent) and the council so that the property cannot be let to other people, and should the family move within an agreed number of years, then they must repay part of the costs.
'Apply early: it has taken us nearly four years from our first application to being able to use the new room. We were turned down at first but reapplied and now we've got it.'
Get hold of the fact sheet from the Family Fund called 'Adaptations to Housing' (England and Wales) for clear detailed advice. See next chapter for other organisations who can help.
Juvenile arthritis is a shocking illness that your family has to learn to live with. Research shows that families who live with arthritis experience levels of distress and cycles of grief, and often feel helpless to alleviate their child's pain. The material in this book offers ideas and information about how you can make some choices about how to live positively with arthritis. Fathers, mothers, brothers, sisters and extended families can together make a difference and need no longer feel 'an island alone'.