Therapeutic patient education

Therapeutic patient education is a process that allows patients and those around them to better understand their disease and its treatment, and to participate in their care so as to maintain or improve their quality of life. Therapeutic patient education is an integral part of care. It is set up by different professionals: doctors, nurses, dieticians, psychologists, etc. Therapeutic patient education is either individual or provided through group workshops, in the form of awareness, information and psychosocial support activities.

Therapeutic patient education can be done on medical prescription. In general, the workshops are offered in hospitals.

List of TPE/Therapeutic patient education programs in the sector: https://etpmaladiesrares.com/filiere-fimatho-malformations-abdomino-thoraciques/ 

Personalized welcome project

Is your child going to school? In order for their education to run smoothly, it may be possible to set up an individualized reception project (PAI).

The PAI is drawn up at the request of families with the aim of assisting the child to attend school (diet, care, drug treatment, etc.).

The PAI is a document written by three parties, the parents, the doctor(s) and the head of the school.

In accordance with the orientation law of 10 July 10 1989, it is essential that the school fulfils as far as possible its mission of welcoming and educating pupils in difficulty, and, in particular, children and adolescents suffering from health difficulties.

While this is a continuation of the program already in place and offered on a case-by-case basis, the new directives aim to facilitate how children may be integrated into schools, even though suffering from chronic illness, allergy or food intolerance, by offering the educational community a framework and tools capable of responding to the multiplicity of individual situations encountered.

There are five essential points in the program:

  • the option of eating in the canteen with a packed lunch prepared by the families, or with a meal respecting the child’s dietary requirements
  • the possibility of taking medication orally, inhaled or by self-injection in an emergency
  • strengthening of medical and professional confidentiality
  • arrangements for setting up emergency care facilities
  • the development of information

For those with digestive pathologies, the PAI can organize ready access to toilets.

MDPH

Since 2005, in each department of France a departmental house for disabled people (MDPH) has been the contact place where people with a disability can turn for all areas of life, regardless of their age and situation.

Services available depend on the degree of disability. For adults, the disability compensation benefit (PCH), the disabled adult allowance (AAH) and its additional benefits, the mobility inclusion card (CMI), the recognition of the quality of disabled worker (RQTH) can be granted, as well as referral to other assistance available, or help with professional pathways.

For children and adolescents, information relating to schooling (referral to a suitable school, allocation of special needs aides, educational planning) can be implemented. The allowance for a disabled child, as well as the disability compensation benefit, may also be granted.

A single application file is available from your MDPH.

MDPH website: mdph.fr 

Map of approved home parenteral nutrition centres

The association La vie par un fil has listed the approved centres for parenteral nutrition at home.

The map is available  here.