Being the parent of a child or young person with arthritis can be stressful. Not only do you have to deal with the shock of the initial diagnosis, but you also have to cope with the additional demands your child’s illness places on you - such as frequent trips to the GP and hospital and looking after them when they are unwell. You might benefit from talking things through with your partner or other family members. It might also help if you can speak to other parents who are in the same situation as you. The Children’s Chronic Arthritis Association offers a support network to parents of children with arthritis, including telephone contact and group meetings. Arthritis Care recently launched an online parent support group called Parents Online. The UK charity Contact a Family offers a family support service and peer support from volunteer parent representatives, to help families caring for disabled children up to the age of 19.
There is also a range of literature aimed at the parents of children with knee arthritis; a useful book called Kids with Arthritis - A Guide for Families by Carrie Britton, is available free of charge from Arthritis Care. The Chat (children have arthritis too) Guide for Parents, which is aimed for the parents of children newly diagnosed with arthritis, is available online from Arthritis Care. Chat 2 Parents, aimed at the parents of teenagers with arthritis, is also available on the website. Arthritis Research UK offers a useful online guide for parents of children with arthritis, called When Your Child Has Arthritis.
If you or your child’s teachers feel that his or her progress at school is being hampered by arthritis, you or the school can request a statutory assessment of special educational needs (SEN). In this assessment, many factors, including evidence from the school regarding your child’s progress and both you and your child’s views, will be taken into consideration. If a statement of SEN is issued, your child will be entitled to extra help. For example, this might mean the provision of a laptop computer and printer, so that they don’t have to struggle with gripping a pen, or a taxi to get to and from school if they find using public transport difficult.