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Oxford University Hospitals NHS Foundation Trust
OxPARC

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Organising school and home life

Organising school and home life can be difficult at the best of times. Caring for a child with JIA or another inflammatory or painful condition means there are extra things to consider, but there are a number of things you can do to make things a little easier.

Scheduling appointments and blood tests

Multiple visits to the hospital or the local health centre can be time consuming.

We may be able to help with this. We try to keep some of the care of your child local to you where possible and we will happily liaise with local services.

You may want to try to schedule blood tests at a regular time/day of the week to minimise their impact and make them part of your routine.

We will try to arrange our appointments to suit you and coordinate appointments to reduce the number of trips to hospital you have to make. If you are unable to attend or need to rearrange, please let us know so we can offer your appointment to someone else.

What to say to school

Teachers

It usually helps to tell the teachers about your child's condition. They can help where necessary to ensure your child can participate fully with all aspects of school life.

If they have any queries, tell them about this site - it contains a section specifically for teachers. In addition, we can give you a booklet written for teachers about JIA and considerations they may need to take.

With your consent, we are happy to speak with teachers about how your child's condition and treatment may affect school. Our occupational therapist will arrange this and can offer school visits if required.

Special Educational Needs Coordinators (SENCOS)

If your child's ability to participate in school is markedly affected, an assessment for a Statement of Educational Need may be requested by you or any professional. Your child's SENCO can talk to you about this. They can offer advice and support for your child at school.

We can provide reports upon request for statementing or other school reviews.

Finances

There will be a financial implication in caring for a child with JIA or another long-term condition e.g. work may be missed to attend appointments, travel costs to and from hospital (see Healthcare Travel Costs Scheme) and changes to plans, including holidays.

You can apply for Personal Independence Payment (PIP, formerly Disability Living Allowance)to help with this. Other help is available on request. You can also visit your local Citizens Advice Bureau.

Holidays

Arranging a holiday will involve extra forward planning, especially if your child is on medication.

We can help by providing:

  • letters for flights, insurance companies and others where necessary
  • guidance on managing flares while on holiday.
  • Advice on travelling with medication

Please check which vaccines are required well in advance of your trip. Check the vaccination section or discuss with our nurse specialists for information on suitability. Very occasionally we may advise against a particular trip. This isunusualand we will only do so if the trip places your child at unnecessary risk.

There are several companies that can provide insurance for people with pre-existing medical conditions.