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POSITIVE PROGRESS FOR PEOPLE WITH PARKINSON'S
My PD Journey
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National Coalitions

To address country-specific challenges to the timely diagnosis, treatment and care of Parkinson’s, My PD Journey is actively encouraging the formation of national stakeholder coalitions for Parkinson’s across Europe.

Should you wish to get involved in a national coalition in your own country, please email secretariat@mpdj.eu for further information.


These national coalitions aim to establish their own tailored models of comprehensive care management that reflect the challenges in their unique national healthcare systems. They involve a wide variety of stakeholders from across the Parkinson’s community, including EPDA member organisations, Parkinson’s specialist neurologists, patients, carers, hospital managers, industry partners and national and local politicians.

The coalitions are developing and launching pilot projects that are as diverse as the healthcare systems which they are helping to evolve. They are also engaging with politicians at a national, regional and local level who can help to raise awareness of Parkinson’s as a priority health challenge and drive much-needed policy change.

So far, 9 national coalitions have been established and are already addressing some of the key hurdles identified in My PD Journey's European inventory research project. It is My PD Journey’s aim that the national coalitions’ activities be scaled up and/or replicated in other countries that face the same cross-cutting issues.

Click on each country below for information on the current MY PD Journey National coalitions

Belgium

BELGIUM

Aims and activities

  • To improve the current standards of care for people with Parkinson’s disease with a focus on the crucial interplay between medication and nutrition.
  • The coalition will hold a series of cooking workshops for people with Parkinson’s and measure the impact of improved nutrition on the disease's treatment/symptoms.

     

Partners

  • Patient organisation: Parki's Kookatelier (Division of the Vlaamse Parkinson Liga)
  • University of Leuven: KULeuven
  • Treatment industry partner: AbbVie
Denmark Flag

DENMARK

National Coalition 1

Aims and activities

  • To improve the health and social care of people living with Parkinson’s by improving patient-reported quality of care and reducing inappropriate referrals to hospitals and admissions as a result of better home-based care.
  • The coalition is undertaking to better train and support home-care nurses.

     

Partners

  • Patient organisation: Parkinsonforeningen
  • Danish municipalities within the central region of Denmark (specific municipalities are yet to be identified)
  • Trade union: The Danish Union of Public Employees (FOA)
  • Healthcare professionals: Neurologists and nurses
  • Key politicians
  • Treatment industry partner: Abbvie

     

National Coalition 2

Aims and activities

  • To contribute with advice, knowledge and physical training, so people with Parkinson's and carers receive tools to manage the disease and to increase quality of life.
  • The coalition organises three rehabilitation efforts aimed at people with Parkinson's:
    • Weekend courses for newly diagnosed people with Parkinson's and carers.
    • Two-week courses for people with Parkinson's in the middle stage of the disease.
    • Home visits for people with Parkinson's living with advanced Parkinson's and their carers.

       

Partners

  • Patient organisation: Parkinsonforeningen
  • Healthcare professionals: Neurologists, psychologists, nurses, social workers, speech therapists, occupational therapists and dieticians.
  • Rehabilitation centers: Sano and Vejlefjord Rehabilitation
  • 19 municipality representatives from across Denmark
  • Key policymakers: Political spokespeople and the Ministry of Health
Finland

FINLAND

Aims and activities

  • To create a leaner, more effective and efficient healthcare model for Parkinson’s disease.
  • The coalition is developing a LEAN education programme1 for Parkinson nurses in key Parkinson’s centres to better meet the needs of people with Parkinson’s.

     

Partners

  • Patient organisation: Suomen Parkinson-liitto ry
  • The Finnish Nurses Association
  • The Finnish Medical Association
  • Maija Perho, former Finnish Minister of Health
  • Trade union: The Union of Health and Social Care Professional (TEHY)
  • Aalto University
  • Treatment industry partners: AbbVie

     

  1. Lean thinking is a business methodology developed by the University of Aalto (Finland), which aims to provide a new way to think about how to organize human activities to deliver more benefits to society and value to individuals while eliminating waste. The basic insight of lean thinking is that if you train every person to identify wasted time and effort in their own job and to better work together to improve processes by eliminating such waste, the result will be more value for less cost.
Greece

GREECE

Aims and activities

  • To better understand the needs of people with Parkinson’s in Greece.
  • The My PD Journey European inventory research questionnaire has been translated into Greek and will be disseminated through key centres in the country. In the medium term, this project’s focus will be on creating a Parkinson’s ‘observatory’ under the Ministry of Health to create a sustainable solution to the needs of people living with the disease in Greece.

     

Partners

  • Patient organisation: Northern Greece Parkinson's Disease Association
  • Healthcare specialists: Dr Panayotis Zikos, a movement disorder specialist and coordinator from EPIKOUROS kinesis (a national Parkinson's patient organisation), Dr Stamelou Maria, a movement disorder specialist, a psychologist specialising in Parkinson’s and a Parkinson’s disease specialist nurse
  • Social security organisation: IKA (Greece’s main social security fund)
  • Treatment industry partner: AbbVie
Netherlands (Holland)

NETHERLANDS

Aims and activities

  • The NIGRA project aims to improve the patient care pathway for the growing number of forgotten people living with Parkinson's disease through:
    • Tackling the under-treatment in Parkinson’s
    • Timely initiation of next steps for people with Parkinson’s
    • Ensuring a balanced and well-informed decision on next treatment steps
    • Optimal impact of the therapy chosen.
  • These aims will be achieved through a series of pilot sites that will test the revised pathway.

     

Partners

  • Patient organisation: Parkinson Vereniging
  • Parkinson’s Nurses Society
  • University Medical Center Groningen (led by Professor Teus Van Laar)
  • Key clinicians
Norway

NORWAY

Aims and activities

  • To improve services for people with Parkinson’s, focusing on diagnosis, treatment and care.
  • The project will use community/home-based Parkinson’s experts to improve the quality of care for people living with Parkinson’s by developing the knowledge and skills of the patients themselves.

     

Partners

  • Patient organisation: Norges Parkinsonforbund (a national Parkinson’s patient organisation)
  • Buskerud and Vestfold University College
  • Municipality: Ål
  • Treatment industry partner: AbbVie
Spain

SPAIN

Aims and activities

  • To develop a new care pathway for people with Parkinson’s to improve access to specialist Parkinson’s services at cost neutral.
  • The coalition will build on the Spanish 'Impact PD' report, which looked at the current Parkinson’s environment in Spain and identified key recommendations to improve the care and support provided to people living with Parkinson’s.

     

Partners

  • Patient organisation: Federacion Espanola Parkinson
  • Healthcare professionals: Primary and secondary healthcare professionals and a hospital health manager
  • Neuroalianza and Sociedad Espanola De Neurologia (a national neurologist society)
  • Key policymakers
  • Treatment industry partner: AbbVie
Sweden

SWEDEN

Aims and activities

  • Parkinson’s disease is a neurodegenerative disease, which requires continuous assessment by a neurologist as well as changes in treatment and care throughout its progression.
  • Consultative Neurology is a coalition aimed at reducing waiting times for Parkinson's patients to receive timely diagnosis, treatment, and care.
  • It is being carried out via a consultative neurology telemedicine pilot project, where a general neurologist consults a Parkinson´s specialist via video. The pilot aims to increase patients’ swift access to a Parkinson’s specialist and ensure that they receive the appropriate treatment, care and support in a timely manner.
  • An additional benefit of the use of consultation via video is the reduction in the number of inappropriate referrals from the general neurologist to the Parkinson´s specialist.
  • Patients who had to wait six months to see a Parkinson’s specialist to get an assessment for the right treatment and care can now see the right person within one week. Video consultations are also creating a forum for dialogue, and are helping to connect general neurologists with Parkinson’s specialists.

 

Partners

  • Patient organisation: ParkinsonForbundet
  • University hospital: Karolinska Univeristetssjukhuset
  • Medical Centre: Sophiahemmet, Vällingby Läkarhus
  • Treatment industry partner: AbbVie
United Kingdom

UNITED KINGDOM

Aims and activities

  • To develop a coalition focused on improving information and support for people with Parkinson's and carers on non-oral therapies.
  • Alongside this work, the coalition is producing a series of Parkinson's ‘heat maps’ to enable local-level comparisons of the effectiveness of Parkinson’s services.

     

Partners