Therapeutic recreation programmes

EURORDIS has been promoting and networking Rare Disease Therapeutic Recreation Programmes (TRPs) since 2007.

What are Therapeutic Recreation Programmes (TRPs)?

The European Network of Rare Disease TRPs was set up in the context of EURORDIS’ European Commission funded Rare Disease Solidarity Project. It recognises any formally or informally organised recreation activity (summer camp, ad hoc trip) which is created with the needs of children or young adults with rare diseases in mind.

The most important criteria is that the children involved get to put treatment and their disease aside, and to focus on fun and leisure.

• Read the Fact Sheet
• Read the EURORDIS Position Paper

Your association may be organising TRPs on an informal basis (e.g. an annual short trip away for the younger members of your association) and not be aware that you are providing TRP services. By getting in involved with the network you can make the public aware that you organize these trips and if desired, improve and professionalise the service you provide. There are a certain amount of formal classifications involved in the organisation of the breaks:

There are 3 main formats that TRPs may follow:

1. ‘Single illness’ TRPs that cater for children with a specific condition, or for siblings of children with a particular condition.
2. ‘Mixed illness’ TRPs that include children with a variety of chronic conditions, or siblings of children with different conditions.
3. ‘Mainstream or integrated’ programmes that involve children with chronic conditions, siblings of children with chronic conditions, and children not affected by illness.

TRPs tend to be residential, with some services conducting one session per year, and others conducting sessions on a year round basis. TRP sessions are relatively short in duration, typically lasting between 7 and 14 days. However, the extremes of TRP length can range from 2 days to 3 months. The scope of individual TRPs vary in a number of respects.

While camping programmes provide recreational activities, the range of recreational activities offered differs, being influenced by the TRP’s:

• geographic location,
• financial considerations,
• the age range of participants.

However, common activities include:

• arts and crafts,
• canoeing,
• adventure,
• camping,
• horse-riding.

In addition to activities, some include formal education and support sessions for children providing them with information about illness and treatment procedures. They also give them the opportunity to talk about their experience of illness, or in the case of siblings, their brother’s or sister’s illness.

Why TRPs?

Most rare diseases affect children: about 50% of all people affected by rare diseases are less than 19 years old. Starting life with a condition that will impact quality of life, life expectancy, social relations, ability to move, to learn, to accomplish daily life activities is a hurdle that becomes more unbearable with often invasive and complex medical interventions.

Personal development, education and learning cannot fully thrive if the life of a child is centred around a disease: children need to enjoy other activities. Children need to play, develop artistic skills, and they need to have fun with other children with or without the same condition as their own.

What does EURORDIS do on behalf of TRPs?

• EURORDIS has been looking at various ways to improve the quality and public awareness of Rare Disease TRP services around Europe.
• EURORDIS advocates, networks, empowers and communicates on behalf of TRPs.

Visibility, advocacy, empowerment activities

• As result of the work of EURORDIS, TRPs were mentioned in the Commission Communication  and in the Council Recommendation  in the chapter specialised services to patients.
• TRPs have been listed in the specific measures recommended in EUROPLAN which provides an additional leverage for national alliances and local patient groups to advocate or take actions and ask for support
• EURORDIS has created a TRP Fact Sheet, to empower our members and help them to advocate at local level for the creation of TRPs .

 

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