Medicines and tips for parents
The context of medicines
The use of a complex variety of medicines, daily exercises and splints together form the key modes of treating juvenile arthritis. In the past decade the use of methotrexate and other disease modifying medicines (DMARDs) have significantly improved the outlook for children and the general management of juvenile arthritis. However, as specialist regional centres have forged ahead with new treatments, a proportion of children are still treated with a generally more cautious, outdated approach. The way forward is for a "shared-care" arrangement wherein the child alternatively sees the local paediatrician and then the paediatric rheumatologist at a regional centre.
Management versus preventative care
The difference between a traditional rheumatology and paediatric rheumatologist’s approach is striking from the families’ perspective. The new specialist approach involves early diagnosis and immediate intervention with strong medication in order to gain quick control of the disease process and prevent damage to the joints[1] . In these instances, there are generally less complications to manage later (such as joint deformities, corrective splinting and social isolation). Where non-specialist approaches are still used, many children are being seen in clinics mainly used by elderly adults with arthritis. Here there may be a generally more cautious approach to prescribing medication including less pain relief and it can take far longer to achieve pharmaceutical control of the disease process. Excellent healthcare professionals work in both settings but the variation in approach, patient/family experience and clinical outcome is under-researched and worrying.
Questions to ask about your medicines
New 2004 government recommendations should improve medication safety[2]. The National
Patient Safety Agency (NPSA) welcomed the Department of Health report on its website:
www.npsa.nhs.uk
The following list of questions to ask about your medicines comes from the Ask About Medicines website, that also includes a downloadable “Health and Medicines Information Guide and Directory”. See: www.askaboutmedicines.org
It is important to understand what your medicines are and what they do and what to look out for. These are the key questions to ask :-
- What does this medicine do?
- How long will my child need to use it?
- How and when should my child take it?
- Should my child avoid any other medicines, drinks, foods or activities whilst taking this medicine?
- What are the possible risks and side effects – and what should I do if they happen to my child?
Tips for parents
- Always follow the instructions given by your doctor, and if in doubt, don't hesitate to ask for further explanations.
- When on school outings, the school will need to have available the medicines in their dispensed bottles in order to ensure that the right medicine is given to the right child, in the correct circumstances.
- At home use a medicine dispenser so that your can sort out the medicines for the week ahead. You can then easily check to see whether your child has had each dose at the right time.
- Inexpensive tablet dispensers can be bought from any high street chemist. Look out for designs that enable you to take one whole day’s medication out of the pack. This facility is especially useful when the child needs to go out on day trips or when another adult has responsibility for administering the medicine.
- A medicine dispenser enables each adult to check what the child has taken already where more than one adult shares responsibility for administering the medicine.
- The medicine dispenser is also useful in training a teenager to monitor their own dosages accurately in preparation of the time when she has sole responsibility.
NB Always store medicines in a cool, dry place, out of reach of children. Take old or unused medicines back to the chemist.
[1] Payne J (June 2003) Prevention not management … the way forward. Occupational Therapy News, 11(5)
[2] Department of Health (2004) Building a safer NHS for patients - improving medication safety. Report by the Chief Pharmaceutical Officer, published January 2004. Full report and summary available on the DH website: www.doh.gov.uk/buildsafenhs/medication
