European Primary Health Care Forum

1. European Primary Health Care Forum Barbara Coulson On behalf of Active Citizenship Network (ACN) Gothenburg SwedenSeptember 3rd - 4th 2012

2. Cittadinanzattiva An Italian citizens’ organization started in 1978; Defense of citizens’ rights and the promotion of civic participation in Italy and in Europe; Some 90.000 members, voluntary organisations. 30 years of experience Active Citizenship Network (ACN) A European network started in 2001 Promotes the participation of citizens’ organizations in European and national public policies Over 100 partner organizations from 30 European countries. ACN and Cittadinanzattiva

3. ACN’s mission is twofold • To contribute to the development of a European Active Citizenship; • To promote the participation of citizens’ organizations in European and national public policies.

4. ACN and Patient’s Rights • 1980 Pioneering initiative of Cittadinazattiva’s Tribunal for Patients Rights • 2002 ACN with 15 citizens organisations at National and European level drafted European Charter of Patients Rights • 2011 EU Commission (DG Sanco) supports the 5th European Patient’s Rights Day

5. Right to Preventative Measure Right to access Right to inform Right to Consent Right to Free Choice Right to Privacy and Confidentiality Right to respect Patient’s time Right to quality standards Right to safety Right to respect Patient’s time innovation Right to avoid unnecessary suffering and pain Right to personalised treatment Right to complain Right to compensation EU Patients Rights Charter

6. Current Healthcare Systems Sustainability • Demographic changes - an ageing population throughout Europe • Pharmaceutical Advances • Improved longevity • Increased drug costs • Greater dependence on long-term drug use • Economic and Financial Crises • Political Will

7. A Story “My mum has long history of illness. Thinning arteries due to smoking, and oral Cancer. Long term wolferine medication. She also has Asthma and Athritis, and is under 70. The Doctor suggested regular exercise; she had been couped up at home looking after my Dad, who also had various illnesses and he thought it would be good mentally and physically if she went to the gym to go swimming so she started going to the local gym (10 minutes away)every Monday for one hour. There was a group that day of about five and she got really friendly with them, they went out for coffee and they picked each other up…

8. She went for over a year and a half. Then the centre decided to refurbish and closed for two months. When it reopened they were unwilling to allow the group to continue and when Mum enquired at the surgery she was informed the group had moved to another gym, forty minutes’ drive. She was unwilling to leave my Dad so long; she went once, but it wasn’t as nice and none of her friends were there. She stopped going. Her Asthma and Arthritis has definitely got worse now needs six weekly injections. I think the gym was extremely beneficial and she would be much healthier today if she had been able to continue going.”

9. Three Questions • Is her health served best by her current medication regime or are there other ways to improve both her health and her well-being? • What are the economic consequences of the medical or social interventions? • Are there sustainability issues that this story raises

10. Health Systems in Europe Huge variability in the structure,planning and organization of National Systems but… Common ground • Desire to develop European Dimension in health politics (Charter of Nice 2000) • National, regional, local health structures • Increasing transfer of services from hospitals into local communities at Primary Care level

11. Patients as Active Citizens • Do we see patients as passive recipients of medical services? • As active citizens, patients become empowered consumers of Health Care services • Organizing themselves locally they can interact with Primary Care professionals to produce innovative (non-drug based?) solutions to local problems

12. Advantages of ‘empowered’ users for Primary Care • Values locally based solutions • Encourages holistic approach to patient care • Has the ability to decrease primary care interventions • Has the ability to reduce primary health care costs

13. Risks of ‘empowered’ users for Primary Care • Requires new and precise acceptance of responsibility from the public institutions to continue and sustain health innovation • Public institutions may see active citizens as a cheap form of service provision • Innovation limited by bureaucratic procedures and discretionary power of public institutions • Funding always subject to the changing winds of political idealogy so long term develpment is difficult to ensure

14. Another Story Mary, about 20 years old, was admitted to a local hospice for end of life care. Mary had always longed to go on a trip on a canal, but never succeeded, and despite going on to a ‘get a wish’ website list she had never reached the top of the list. By chance the hospice had recently taken some patients on such a trip with a voluntary organisation which specialises in canal trips with specially adapted boats. A telephone call to the organisation needing a very quick response for obvious reasons

15. and resulted in the volunteer skippers and crew going out 24hours later and at a week-end to provide that trip for the young person and her family. The young woman and all her family were delighted that finally she was able to do something she had always wanted and the trip was a moment of delight for her A nurse attended, as she needed medication during the trip but the end of that person’s life was greatly enhanced by the working together of both the medical and voluntary agency providing not only the medical care but also the other aspects of the well-being agenda in which civil society excels. The young woman died a fortnight or so later

16. Workshop discussion points 1. Active Citizenship has great synergy with Primary health Care at the local community level to help individuals, especially the vulnerable, but funding is a particular issue since historically the national and regional funding strategies have focussed on medical solutions over community based solutions. • Are alternative funding strategies are possible?

17. Workshop discussion points 2. Is there conflict between patients rights as the consumers of Health Care services and the traditional doctor patient relationship? 3. At a European level in what way can we bring forward the EU charter for patients rights: - • how should we produce change from the bottom-up. • how can citizens as patients become part of policy building