World Kidney is held on the second Thursday in March every year. This year it was on March 8 and the topic was Kidney Disease & Women, to highlight the impact of kidney disease on women’s health.

The risk of developing Chronic Kidney Disease is about the same for men and women, but if women get at the earlier stages of their life it could mean more challenges and risk factors during a possible pregnancy and may also have risk of reduced fertility.

When the kidneys are fresh and in a good health-situation, they have four key roles in our health:

• they get rid of excess water and toxics,
• regulate the bloodpressure,
• produce red blood cells
• keep bones strong.

When the kidneys start to fail, it is a «silent» disease and most people do not understand they got a kidney disease. Until they do. That is why we try to inform people and stimulate them to test themselves for Kidney Disease. This test is very easy to do, only a blood and urin check and you will get an answer.
We know that about 1 in ten people have some degree of CKD, and in elderly people the numbers increase. People at 75 could nearly half have some stage of CKD.

This disease could not be cured, but if it is discovered early, the process could be delayed, or in a few cases even stopped. If you got to the most serious stage, the only way to survive is throught dialyse or transplantation. This is a very expensive treatment and will vary very much between countries.

That is why the patients associations and global partners try to raise the awareness connected to Kidney Disease. Patients Engagement means to create a partnership between patients, patients families and doctors. To learn from each others in order to make the best health outcome.

Alzheimer Europe (AE) is delighted to present its two new publications: A comparative report on “Standards for residential care facilities in Europe” and a discussion paper called “Dementia as a disability? Implications for ethics, policy and practice”. As always, involving people living with dementia in its work helps AE ensure it continues to reflect their needs and views. “Nothing about us without us!”

The comparative report, coordinated by Project Officer Ana Diaz, in collaboration with AE’s national members and various national experts and with input from members of the European Working Group of People with Dementia (EWGPWD) and their supporters, provides an overview of the existing care standards and regulatory requirements residential care facilities in Europe need to meet and addresses key areas that impact on people in residential care: Physical environment; Staff providing care; Health and social care; End-of-life care; and Abuse and use of restraint.

It highlights some important oversights on how dementia is currently addressed or neglected in frameworks and standards in Europe. However, it also highlights examples of good practices in these areas across Europe. Some of the key issues that still need to be considered at policy level are the formulation of clear and legally binding standards with specific considerations of the needs of residents with dementia, appropriate training for staff, awareness raising and the provision of high-quality accessible information to residents, families and staff about their rights and what they should be able to expect from care.

AE hopes this comparative report will be useful in improving the standards of care and the quality of life of people with dementia in residential care.

For further information please contact Dr Ana Diaz: ana.diaz@alzheimer-europe.org

About the discussion paper: Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) states, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This clearly applies to the situation and experience of many people with dementia. The paper, which was authored by a working group of 11 experts in the fields of disability, dementia, law, anthropology, psychology and policy from across Europe and chaired by AE Director for Projects Dianne Gove, takes this as its starting point to explore the possible implications for ethics, policy and practice of accepting dementia as a disability.

It was extremely important for AE to ensure that the experience and perspectives of people with dementia were reflected in this paper. The entire EWGPWD was therefore involved right from the start, first by asking them about their perceptions of disability and dementia and then via a one-day face-to-face consultation and subsequent involvement in the development of an accessible version of the full report. Two members of the EWGPWD, Helen Rochford-Brennan and Helga Rohra, were also members of the expert ethics group

For further information please contact Dr Dianne Gove: dianne.gove@alzheimer-europe.org

You can purchase both publications via http://alzheimer-europe.org/Publications/E-Shop

May 2017 marked a landmark in Irish healthcare planning. Under the leadership of Parliamentarian Roisin Shortall, the report of the Houses of the Oireachtas (National Parliament) was published and signed up by all political parties. Professor Ian Graham warns against the many barriers towards its proper implementation.

The “Slaintecare” (“slainte” is the Irish word for health) report of the Committee on the Future of Healthcare proposes to establish a universal single-tier service where patients are treated on the basis of health need rather than on ability to pay.

This is great news – except that every report on health since the 1970s has promised equality and access – and these have not been delivered. This has been termed in the health-related environment as the “Implementation Deficiency Disorder”. Discussions with healthcare professionals in other healthcare jurisdictions suggests that many countries may face similar challenges. If we are to change history and actually implement change, we need to understand the roadblocks.

These may include:

1. A short political cycle of five years that militates against long term planning;
2. A political system that is one of opposition and confrontation;
3. The lack of culture of, or apparent expertise in, conflict resolution or positive decision making;
4. TDs (Members of Parliament) are elected democratically, but with no requirement for appropriate knowledge, training or skills in healthcare. Despite this, we have had brilliant Ministers for health- who have repeatedly proved to be unable to deliver effective reform;
5. Local politicians may have a power of veto over unpopular local decisions such as the reform of small local hospitals;
6. We have a centralized, clumsy Health Service Executive (HSE) with separation of power from responsibility – a failure is often a “system” failure, however someone must be responsible for the system. But, refreshingly, the Chief of the HSE stated recently – “there is abundant evidence that vesting authority, empowerment and responsibility as close as possible to the delivery of care produces better outcomes”;
7. Private medicine, including consultant physicians such as myself, benefit directly from the status quo in that citizens who can perhaps ill afford it take out private health insurance just to gain access to the timely healthcare that should be their right;
8. It is all too easy for vested interests to undermine a report like Slaintecare by questioning, for example, the costings rather than endorsing and supporting the principles.

So, the challenge facing Irish Health Reform is not defining what is needed, but implementing the excellent reports that we already have. This implies a need for a formal stakeholder analysis to see if the above roadblocks can be confirmed, if other active or passive blocks can be defined, and to set the basis for dealing with them.

*Ian M Graham, FRCPI, FESC, FTCD

Ian’s current positions are-

Professor of Cardiovascular Medicine, Trinity College Dublin

Professor of Preventive Cardiology Emeritus, Royal College of Surgeons in Ireland

Professor and Head of Cardiology, Tallaght Hospital (retired).

Honorary Fellow of Trinity College, Dublin

Secretary-Treasurer and Board member, European Society of Cardiology

Chair, Adelaide Health Foundation Health Policy Initiative

Project Leader, SCORE CVD risk estimation system

Project leader SURF international audit of CVD risk factor recording and control.

Co-Chair WHO CVD risk estimation project

Co-Chair ESC/EAS 2016 Guidelines on the management of hyperlipidaemia

Member 6th Joint European Task Force on the prevention of CVD in Clinical Practice

Chair, Irish Heart Foundation Council on CVD prevention

“Mental health at work should be considered as an asset”. That was the key message sent by experts on World Mental Health Day (11/10). A better dialogue between employees and organisations, implementation of existing guidelines, and a reduction in stigma around mental health in the workplace can make that happen.

Over one hundred participants attended the “Mental Health in the Work place” conference organised in the European Parliament by the European Alliance for Mental Health – Employment & Work, the European Committee of the Regions Interregional Group on Health and Wellbeing and its Secretariat EUREGHA, in collaboration with EPF member Mental Health Europe.

The conference encouraged open dialogue on how to promote mentally healthy workplaces between employees, employers, users of mental health services, and human resource specialists. “It is a matter of language: we need to detoxify the term mental health. Mental health is not mental ill health, we need to promote positive language around mental health at work and beyond” said Bob Grove, Mental Health Europe’s Senior Policy Advisor.

Work-related ill-health costs €476 billion every year

According to European Agency for Safety and Health at Work (EU-OSHA), in the European Union alone, work-related ill-health and injury costs €476 billion every year, which could be saved with the right occupational safety and health strategies and used for promoting wellbeing and positive mental health. As Brenda O’Brien from EU-OSHA explained “the main reason for companies to address health and safety is to be compliant with the law, it is not about altruism”. Harmonisation of minimum occupational health and safety standards throughout Europe is needed, as well as a better understanding of why it is beneficial to invest in mental wellbeing at work. There remains a lack of understanding and implementation of existing legislation on mental health in the workplace, and participants recommended more and better guidelines on how to interpret existing requirements.

It became clear from the exchanges that mental health promotion and prevention in the workplace is mainly about organisational and structural changes, and most importantly about relationships and language. Stigma and self-stigma also have a huge role to play in promoting mental health-friendly workplaces. “For most people experiencing mental ill health, the stigma attached to it is even worse than the mental health problem itself” explained Anita Hubner, Mental Health Ambassador.

It is essential for organisations to invest in line managers’ capacity building by providing the tools on how to talk about mental health in the workplace and to adopt an integrated approach to physical and psychosocial risk factors when managing employee absence. As Professor Stephan Bevan from the Institute of Employment Studies put it “Do not over medicalise [employee] absence: the job content and relationship at work matter too!”

Mental health starts before work

Discussions also emphasised the need to approach mental health at work through a public health perspective. This would benefit employees, employers, and society and would also raise awareness about the importance of risk assessment measures to mitigate against psychosocial risks at work.  “Mental health starts before work. We do not leave our mental health at the door when entering work in the morning” explained David McDaid from the London Schools of Economics.

Participants concluded that mental health promotion in the workplace should be wellbeing-focused and encourage employee participation in the process. Healthy workplaces are about mentally healthy relationships and coherent organisational structures.

For more information, please visit http://www.mhe-sme.org/.

I was diagnosed with colitis ulcerosa (inflammatory bowel disease or IBD) in 2000 after a year of fatigue and medical problems. Putting a name and some words on my symptoms was a big relief. I immediately started proper treatment to reduce the inflammation, and remembering my parents’ advice that ‘impossible is not in our vocabulary’, I managed to continue my studies. I graduated from college four years later.

All went very fast then: I got a job, got married and moved into my house. Juggling between three small children, having a job and doing housekeeping while my husband worked seven days a week can be quite busy: There was simply no time to take care of my health.

Years later, in 2015, my neighbour got diagnosed with colorectal cancer. He told me something that truly opened my eyes: ‘Please take care of yourself and go see your physician!’. It was difficult to admit it then but he was right. I was reluctant but followed his advice and made an appointment with my gastroenterologist. Against all expectations, we had a constructive conversation and tried to find out what treatment could get me back on track and could give me the comfort I needed in my personal life.

After more than one year searching for a proper treatment with my doctor, I felt the need to write down my story about IBD. I started a diary, putting on paper my feelings and experiences on how to deal with chronic illness every day.

I became very ill in November 2016 with severe fatigue, and frankly, getting quite tired of my situation. I was at the hospital when my IBD nurse came in to my room and asked me how I was.

At that very moment, my nurse told me: ‘Please be honest, you really don’t need to put on that happy face all the time, crying isn’t a sign of weakness and it is definitely allowed here’. I think no one can imagine what a relief that was! Tears rolled down and a few minutes later, I was able to share my burden. I showed her my diary and for a moment, it was no longer the IBD nurse sitting there: it was the mom, wife and understanding friend, one who shared my goals and interests, one truly interested in my story.

We are now in 2017, and I am back on track. I finally found a treatment that is working well for me. The past few months have been pretty heavy but also fascinating, thanks to the conversations with my IBD nurse. A person who became my ‘partner’ towards a more compassionate and authentic patient-nurse relationship.

In the meantime, I became an active member of the Belgian patient organisation for IBD patients CCV-VZW with the idea to help fellow-patients. I try to set to new goals towards patient participation and patient advocacy in Belgium with the support of my IBD nurse. We both believe that sharing knowledge and experience may lead to new insights in the treatment of patients.

As an IBD patient, I try to deal with the fact that there are no certainties: flare-ups may suddenly occur and treatments are not guaranteed in time. Nevertheless, science and medicine evolve and new solutions are in the pipeline. We need to spread a clear and positive message of hope to newly diagnosed patients and patients who have to deal with all the physical and emotional consequences of this disease!

Inge Vandelannoote is a patient and works with the Belgian IBD patient organisation CCv-VZW, a member of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA), member of EPF.

You can read other stories from Inge, on her blog here www.ingevdln.blog

From the 7^th to the 08^th of June, the city of Valetta in Malta hosted the Societal Impact of Pain (SIP) symposium. Patients, healthcare professionals, researchers and European politicians came together to discuss EU healthcare policies to alleviate the burden of chronic pain for an estimated 100 million patients.

For a very long time, chronic pain and its implications on the whole society[1] have suffered a lack of recognition from the decision makers, both at EU and national level. The challenge for patient organisations working in that area has always been to make the condition acknowledged as an important factor affecting patients as much as any other chronic diseases.

Times are perhaps changing: this year’s symposium saw two major announcements that will potentially bring good news for the chronic pain community:

• The classification by the World Health Organisation of chronic pain in the catalogue of International Classification of Diseases;
• The setting up of a focus group on chronic pain within the European Commission EU Health Policy Forum.

Representing the World Health Organisation (WHO), Dr Robert Jakob shared the global institution’s proposal for a new definition of ‘chronic pain’. This classification is to be included in the newest WHO’s International Classification of Diseases (ICD).

The ICD list is used by countries whenever they want to develop new healthcare measures and consider which services to fund. With this new official classification, chronic pain is more likely to get recognition by national governments and be included in national health policies and get more visibility. “This will have major implications for health care,” said Rolf-Detlef Treede, Vice-Dean for Research at the Medical Faculty Mannheim of Heidelberg University in Germany, “We should see chronic pain finally getting the recognition it deserves.”

The other important milestone from the symposium was the communication from Martin Seychell, Deputy Director General at the European Commission’s DG SANTE that a dedicated expert group will be set up within the EU Health Policy Forum, a platform bringing together health-related NGOs and stakeholders, under the auspices of DG SANTE. The hope of the chronic pain community is that this expert group will ultimately enhance best practice sharing across EU Member States, in coordination with the European Commission. Once fully operational, the group will be open to employers’ organisations, insurers, economists and any other invited stakeholder. “The European Commission’s initiative reflects the Maltese Presidency’s goal of structured cooperation between healthcare systems. It is a huge step forward for patients throughout Europe, and a huge momentum for our cause,” said a delighted Gertrude Buttigieg of the Malta Health Network, EPF Member and co-host of the symposium.

Our Secretary General Nicola Bedlington took part in the symposium and recorded a video statement: ”EPF is driving two agendas that are intrinsically linked to the issue of challenging pain: patient empowerment and patient access, aspects that have profound impact on pain management”.

Link to the full report of the event: http://www.independent.com.mt/articles/2017-06-12/newspaper-lifestyleculture/In-Valletta-experts-pave-the-way-for-better-European-pain-policy-6736175361

[1] The total direct and indirect healthcare costs for chronic pain disorders in Member States vary from 2 % to 2.9 % of GDP, with an EU average of 2.4 % and a cost of EUR 271 billion per year. https://www.sip-platform.eu/pain-resources/initiatives/europe

Every month we put the spotlight on one of our members. Today, we are delighted to catch up with the Swedish Disability Rights Federation, who joined EPF in April 2017.

1. What’s on the top of your agenda?

The Swedish Disability Rights Federation bases its work on the core principles of equality and everybody´s right to self-determination and full participation in society. Our vision is a society for all, defined by solidarity, equality and participation. Our goals follow the UN-convention on the rights for people with disabilities, CRPD.

2. Why does your organisation exist?

At the beginning of the 1940’s there was a lack of workforce in Sweden. However, unemployment among persons with disabilities was still worryingly high. Our organisation was established to address these issues. Today, the Swedish Disability Rights federation is one of Sweden’s largest NGOs. We are the united voice of over 40 national disability organisations, with 400 000 individual members that represent a wide range of conditions and diagnoses.

3. What is your biggest achievement as an organisation?

We have 75 years of experience in advocacy work and information sharing. We have been a driving force behind considerable labour market and social changes for persons with disabilities. These are only  a few examples:

• the closing down of major institutions and specialised schools;
• the development of grants for persons with disabilities;
• improved labour market conditions for patients and persons with disabilities;
• access to housing;
• access to highly specialised healthcare.

4. What is for you the key benefit of your organisation’s involvement in EPF?

 We believe we can benefit from EPF’s long experience in impacting and advocating for patient-centred policy at the European level. Many domestic issues/matters related to patient empowerment share a common European dimension. We also believe that through EPF, we can benefit from exchanging best practices with other patient organisations at European and national levels.

5. What are the main challenges you meet?

One of the challenges we face most often is that people with disabilities or chronic diseases are expected to be passive recipients of treatments or measures that affect them. We work for the right to participate actively in your own care, treatment and in planning your own life.

For further information, please go to the website: www.funktionsratt.se

Patients, doctors and Members of the European Parliament Interest Group on Allergy and Asthma have launched a call to action to improve the quality of life of allergy and asthma patients. See more details on this campaign co-led by EFA, our member, on EPF’s Blog!

Targeted at European and national decision-makers, this campaign has been initiated by the European Academy of Allergy and Clinical Immunology (EAACI) and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA), member of EPF.

Its overarching objective is to unite all strategic European and national stakeholders as well as interested individuals to help drive change in the policy responses to allergy and asthma, and to support patients’ rights.

In particular, it calls for:

• European strategies and programmes on allergy and asthma to be implemented in all Member States;
• Greater funding for research to advance the understanding of allergy and asthma;
• Better prevention and diagnosis to achieve early detection and allow timely and effective treatment;
• Actions to address underlying triggers, such as air quality, food allergens and chemicals, and to improve the analysis of the root causes of allergic diseases;

Strengthened work to pioneer individualised treatment and progress personalised medicine.The Call to Action is open until the end of September for endorsement by all interested parties wishing to join this move to support stronger and improved allergy and asthma policies.

Do you want to join in creating a healthier and happier future for the over 220 million patients suffering from allergy and asthma in Europe?

Please sign and share the online petition! http://callallergyasthma.eu/  #CallAllergyAsthma

Contact: Isabel Proaño Gómez, Communications and Membership Manager

Not everybody is equal when it comes to dementia care and treatment. This is the telling result of the recent Alzheimer Europe’s report entitled the “European Dementia Monitor”, which assessed countries for their dementia policies and the support and treatment they provide to people with dementia and their carers.

Providing a benchmark of national dementia policies, the survey scanned countries for their practices in different categories:

1. The availability of care services
2. The affordability of care services
3. The reimbursement of medicines
4. The availability of clinical trials
5. The involvement of the country in European dementia research initiatives
6. The recognition of dementia as a priority
7. The development of dementia-friendly initiatives
8. The recognition of legal rights
9. The ratification of International and European human rights treaties
10. Care and employment rights

According to the findings of the European Dementia Monitor, no country excelled in all ten categories surveyed.

Key findings:

• Finland scored highest on care availability and affordability providing the most care services and ensuring accessible and affordable services for people with dementia and their carers.
• Belgium, Ireland, Sweden and the United Kingdom (both England and Scotland) came first- all anti-dementia treatments were fully reimbursed and countries had a policy in place to limit the inappropriate use of antipsychotics.
• Germany, France and Spain scored highest as it was possible for people with dementia to take part in all nine phase III clinical trials currently being conducted in Europe.
• Italy was the most committed to and active in European dementia research
• Ireland and Norway came first in the recognition of dementia as a national policy and research priority.
• Finland, the Netherlands and the United Kingdom (England) had the most inclusive and dementia-friendly initiatives and communities.
• Germany, France, Israel, the Netherlands, Slovenia and the United Kingdom (England and Scotland) complied with Alzheimer Europe’s four recommendations with regard to respecting the legal rights of people with dementia and their carers.
• Finland and Norway had ratified the most International and European human rights
• Ireland came first with regard to the care and employment rights which are recognised.

There were significant differences between European countries especially from East to west with most of the Western and Northern European countries scoring significantly higher than Eastern European countries.

Echoing the priorities of our #Access2030 campaign, Alzheimer Europe’s report brings more evidence that equal access and affordability of care is far from a reality for many European patients.

More about the report can be read here.

The European Congress of Radiology (ECR) took place in Vienna from 1-5 March 2017 providing a platform to discuss strategies towards improved patient safety and quality of care. Patients and healthcare professionals exchanged views on best practices in patient involvement.

The 4-day ECR 2017 congress gave the opportunity to participants to join in three sessions organised by the European Society of Radiology’s Patient Advisory Group (ESR-PAG) – a platform bringing together patients and imaging professionals – to discuss developments in the field of medical imaging to the benefit of patients in Europe.

Best Practices in Patient Involvement

The first breakout session “Improving patient safety and quality of care in clinical radiology” explored how audit measurements and standards can improve patient safety and quality of care. Speakers presented concrete examples of best practices on implementing these standards in the radiology department:

• Dr Barry Kelly, chair of the ESR Audit & Standards subcommittee, underlined the need to analyse and audit all partners involved, including doctors themselves, whose working conditions and training can have an influence on patient safety.
• Erik Briers, (The European Prostate Cancer Coalition – Europa Uomo), focused on the patient journey through the various radiology departments, suggesting that information tailored to the different levels of literacy should be proposed, together with procedures on how to handle questions from patients and next of kin or carers.
• Dr Dominique Carrié, a radiologist from Toulouse, France, presented the patient satisfaction questionnaire prepared by the ESR-PAG. He underlined that “assessing patients’ needs and concerns is crucial to practice radiology closer to the patient”.

The last session focused on “Big data – data management, standardisation, access and protection”, detailing its importance for personalised medicine in radiology.

Prof. Peter Mildenberger, chair of the ESR Professional Issues and Economics in Radiology Subcommittee, provided an overview of European developments. He pointed out that while new developments in medical imaging offer new opportunities, it could also generate a lot of different and more sophisticated work than conventional x-ray or CT (computed tomography) scans.

Nicola Bedlington, Secretary General of the European Patient’s Forum (EPF) and co-chair of the ESR-PAG, presented the patient perspective on big data and noted the increasing drive to improve collection and use of patients’ data in order to achieve better, more sustainable healthcare and advance health research. She highlighted that “the only way to do this in a meaningful and valuable way is together with patients”.

Finally, the EuroSafe Imaging Café “Together for Patient Safety” came down as a popular place for informal discussions and networking between patients and professionals. The Café was notably the occasion to promote the new information leaflet about the ESR-PAG aiming to raise awareness and promote quality and safety in medical imaging.

All the recorded ESR-PAG sessions are available in podcasts on ECR Online.