Romania Exchange

By Kathy Wedell, NAC Member

The NMD-PRO Project: 

‘Neuromuscular Diseases – Professional Parents and Patients’

Four representatives from Action Duchenne have just visited Romania to make contact with a partner organisation of Romanian parents – Parent Project Romania – as well as with clinicians and educationalists from Italy and Latvia, in a project called ‘NMD-PRO’, short for ‘Neuromuscular Diseases – Professional Parents and Patients’.

This project consists of five exchange visits to four countries – Romania, Italy, Latvia, Britain, and finally in Romania again – over the next year and a half.  Next year in November the project participants will be coming to the Action Duchenne conference in London.

The project and the visits are being funded by a trust called the Grundtvig Programme.  The project was set up by two people:  Isabela Tudorache, a parent and co-founder of Parent Project Romania; and Eugenia Rosulescu, physiotherapist and lecturer at the Department of Sports Medicine and Kinetotherapy at the University of Craiova, Romania.  The university department was the venue for our discussions.

The four of us who went from Action Duchenne were Nick Catlin (CEO), Kate Angus (one of the Regional Development Officers), Mary Downe (one of the Trustees), and Kathy Wedell (who is on the National Advocacy Council).

The objectives of the NMD-PRO project are

• To give parents and adults living with neuromuscular conditions  more understanding of standards of care and treatment issues, to enable them, in the words of the project, to be ‘professional parents and patients’
• To introduce the concepts of ‘family-centred care’, multidisciplinary team care’ and ‘parent-to-parent approach’ and the fundamental role of these concepts in providing appropriate standards of care and treatment for people living with neuromuscular conditions
• To enable partners in the project to share experience and best practice
• To create a website and a guidebook to offer information on care and treatment to parents, professionals, and people living with neuromuscular conditions.

The key outcomes of this first visit were:

Each partner in the project had a lot of opportunity, in formal presentations and informal conversations, to share their experience and understanding on a wide range of issues to do with Duchenne muscular dystrophy.  Some Romanian families had travelled 600 kilometres to be there for these discussions.

One major focus was on improving standards of care.  Concerns common to each country were: the need for more multidisciplinary teams, better access for families to information, better training for professionals, and problems of post-code lotteries.

The second major focus was on the issues involved in pushing, as a parent-run pressure group, for those multidisciplinary teams and that access to information, training of professionals, and uniformly high standards of care.  This is a summary of the key points that came up:

• Information is power.  Having information gives you the confidence and power to challenge doctors and to influence healthcare policy:  information about DMD, about standards of care, about research into treatments, about how your healthcare system works, about how government policy on healthcare is made.

• Have a clear vision, a clear overall aim.  This means you don’t succumb to the status quo, you stick to your own expectations for care and treatment.
• Set out concrete and achievable aims for the year ahead.
• Join the dots of resources and allies you already have – such as healthcare professionals, funders, institutions, politicians.
• Recognise and celebrate your achievements
• Be strategic in how you raise funds.

A website for the project has been set up – www.nmd-pro.ro.

A very important and significant outcome of the visit for me as a parent was meeting the Romanian families who are living with Duchenne muscular dystrophy.  Meeting Isabela and her husband Doru and their son Peter, and Ana, and Adrian and his wife and son, was like meeting extended family.  It was very significant to be able to share our concerns for our children.  I felt we were able to give each other that solidarity which is so important and sustaining, as we face the challenges of Duchenne muscular dystrophy.

Kathy Wedell