News

Theme announced for World Patient Safety Day (WPSD) 2020

The World Health Organization has announced the theme for World Patient Safety Day (WPSD) 2020. Health Worker Safety: A Priority for Patient Safety has been selected as the theme for World Patient Safety Day 2020, which focuses on the interrelationship between health worker safety and patient safety, depicted in the slogan Safe Health Workers, Safe Patients’. This emphasizes the need for a safe working environment for health workers as a prerequisite for ensuring patient safety. Along with this slogan, WHO is proposing a call for action, Speak Up for Health Worker Safety!, which requests urgent and sustainable actions by all stakeholders to recognize and invest in the safety of health workers, as a priority for patient safety. The year 2020 is also the International Year of the Nurse and the Midwife, and the theme of World Patient Safety Day 2020 is very much aligned with its objectives.

The global campaign for World Patient Safety Day 2020 proposes call for action to key target audience for WPSD 2020. National governments, international organizations, professional associations, academic institutions, civil society organizations and health care facilities are encouraged to adapt and develop national and local campaigns. The signature mark of the global campaign is to light up iconic monuments, landmarks, and public places in orange colour, in collaboration with local authorities. This will also be a gesture of respect and gratitude to all health workers.

To read more, please visit the event page for World Patient Safety Day 2020:

https://www.who.int/news-room/events/detail/2020/09/17/default-calendar/world-patient-safety-day-2020

Dexamethasone: life-saving drug for COVID19 patients

The World Patients Alliance (WPA) has welcomed the initial clinical trial results from the United Kingdom (UK) that show dexamethasone, a corticosteroid, can be lifesaving for patients who are critically ill with COVID-19.

For patients on ventilators, the treatment was shown to reduce mortality by about one-third, and for patients requiring only oxygen, mortality was cut by about one fifth, according to preliminary findings shared with WHO.

The benefit was only seen in patients seriously ill with COVID-19, and was not observed in patients with milder disease.

“This is the first treatment to be shown to reduce mortality in patients with COVID-19 requiring oxygen or ventilator support,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “This is great news and I congratulate the Government of the UK, the University of Oxford, and the many hospitals and patients in the UK who have contributed to this lifesaving scientific breakthrough.” Dexamethasone is a steroid that has been used since the 1960s to reduce inflammation in a range of conditions, including inflammatory disorders and certain cancers. It has been listed on the WHO Model List of Essential Medicines since 1977 in multiple formulations, and is currently off-patent and affordably available in most countries.

The researchers shared initial insights about the results of the trial with WHO, and we are looking forward to the full data analysis in the coming days. WHO will coordinate a meta-analysis to increase our overall understanding of this intervention. WHO clinical guidance will be updated to reflect how and when the drug should be used in COVID-19.

Meanwhile, UK Health Secretary Matt Hancock said that the Britain has 240,000 doses of the dexamethasone in stock and on order. In a message he said: “We backed the potential of dexamethasone - the groundbreaking coronavirus treatment - in February & put £25m behind the science. Yesterday it was saving lives in our NHS. A brilliant team effort & we’re grateful to all those involved.”

 

Virtual World Health Assembly ends with global commitment to COVID-19 response

“Let our shared humanity be the antidote to our shared threat. “-Dr Tedros

The 73rd World Health Assembly held its first-ever virtual assembly and adopted a landmark resolution to bring the world together to fight the COVID-19 pandemic.

The resolution, which was co-sponsored by more than 130 countries, was adopted by consensus.

It calls for the intensification of efforts to control the pandemic, and for equitable access to and fair distribution of all essential health technologies and products to combat the virus. It also calls for an independent and comprehensive evaluation of the global response, including, but not limited to, WHO’s performance.

As WHO convened ministers of health from almost every country in the world, the consistent message throughout the two-day meeting—including from the 14 heads of state participating in the opening and closing sessions —was that global unity is the most powerful tool to combat the outbreak. The resolution is a concrete manifestation of this call, and a roadmap for controlling the outbreak.

In his closing remarks, WHO Director-General Dr Tedros Adhanom Ghebreyesus said “COVID-19 has robbed us of people we love. It’s robbed us of lives and livelihoods; it’s shaken the foundations of our world; it threatens to tear at the fabric of international cooperation. But it’s also reminded us that for all our differences, we are one human race, and we are stronger together.”

The World Health Assembly will reconvene later in the year.

EU to urgently address Patients’ concerns related to COVID19

The EU Commissioner for Health and Food Safety,  Stella Kyriakides held a virtual meeting with European Patients Forum (EPF) and discussed challenges faced by patients during COVID19. The Commissioner reiterated that no chronic patients should be left behind and patients need to be at the centre of the decision-making process.

During the meeting, the Commissioner highlighted the initiatives taken by the Commission to respond to the pandemic, which includes weekly calls with national ministries of health, sharing guidelines and coordinating joint procurements of protective gear and ventilators.

EPF President, Mr. Marco Greco stressed upon the fact that there was lack of patient involvement in COVID19 decision-making processes. Furthermore, he mentioned the key focus areas where EPF has been targeting their work, namely ensuring continuedaccess to timely treatment and care and the involvement of patients in strategies for deconfinement. Mr. Greco also provided details and update on EPF’s presence and actions since the beginning of the pandemic.

Furthermore, the EPF outlined the main challenges for patients with chronic conditions, such as treatment delay, discontinuation, general lack of clarity or appropriate guidance, and the strong need for enhanced European collaboration for strengthening health systems with patients’ involvement in developing solutions.

In his concluding statement, Mr. Marco said that “the pandemic has shown the weak point of our health systems but also their potential. We must not be discouraged and seize the opportunity to keep fighting by putting our strengths together.”

WHO Consultation on Global Patient Safety Action Plan

The World Health Organization (WHO) through the 72nd World Health Assembly, in May

2019, adopted resolution WHA72.6 on “Global Action on Patient Safety”, which urges

Member States to recognize patient safety as a key priority in health sector policies and

programmes. The member states requested the WHO Director-General to formulate a

global patient safety action plan in consultation with Member States, regional economic

integration organizations, patients and all relevant stakeholders, including in the private

sector. This plan will besubmitted to the 148th session of the Executive Board in January

2021, and thereafter to the 74th WHA, in May 2021.

In this regard, a three-day global consultation was organized by the WHO at Geneva from 24-26 Feb 2020. The objective of this consultation was to work with stakeholders including patients, partners

(L-R) Jeremy Hunt (former UK  Foreign Secretary), Dr Neelam Dhingra-Kumar (Coordinator Patient Safety and Risk Management, WHO), Dr. Tedros Adhanom Ghebreyesus (Director-General WHO), Sir Liam Donaldson (WHO Envoy for Patient Safety) and Dr Edward Kelley Director (Integrated Health Services Department WHO)

 

and experts to initiate the formulation of the Global Patient SafetyAction Plan. The World Patients Alliance’s (WPA) Chair Elect, Hussain Jafri was also invited to the global consultation. The participants worked on finalizing the shared vision for safer health care, goals and guiding principles for the global patient safety action plan. Moreover, the participants also worked across 12 key themes for the implementation of the action plan.

 

The consultative meeting was moderated by Sir Liam Donaldson, WHO Envoy for Patient Safety and Dr Neelam Dhingra-Kumar, Coordinator Patient Safety and Risk Management, WHO Headquarters.  The WHO Director-General ( DG ) Dr. Tedros Adhanom Ghebreyesus also participated in the closing ceremony of the consultation meeting.

 

The Global Patient Safety Action Plan is a commitment from WHO, international health agencies and Member States to organize and roll out definitive action to reduce the overall burden of patient harm due to unsafe health care. The Global Patient Safety Action Plan will also work as the mainstream execution instrument for the 72nd WHA resolution on “Global action on patient safety”. This plan will be based on the guiding principles of equity, sustainability and accountability. The proposed action plan will seek inspiration and coherence with existing global action plans developed by WHO and other global health agencies. Aligned with the Sustainable Developmental Goals, the plan will be a roadmap for “A Decade of Patient Safety: 2020-2030”. The action plan is being developed through an iterative process, including a scoping exercise, a literature review and a draft, formulated by the WHO Secretariat, followed by multiple consultation meetings, both virtual and face-to-face. The final draft will be placed on the WHO website for open public consultation.

International Association for the Study of Pain

Working together for pain – Meeting in Amsterdam

On 8 December 2019 held an important meeting to focus on the voice and needs of patients.  Representatives from Presidential Task Force on the Global Alliance of Pain Patients Advocates - GAPPA met in Amsterdam, Netherlands.


After many years of effort, the voice of the patient is finally heard. After the initial meeting at the 2019 World Congress of the International Association for the Study of Pain (IASP) in Boston, Massachusetts, USA, where patient organizations from around the world meet and a plan was formulated to move forward with establishing GAPPA where patients had a voice in IASP.   We have to acknowledge the support of the IASP president Lars Arendt-Nielsen, Dr. Med., PhD and in recognizing the voice of the patient.

They had a chance to spoke to Matthew D’Uva, IASP CEO and Sarah Wheeler, IASP Director of Global Industry Engagement. Matthew D’Uva, who is also part of Scientific Committee stressed GAPPA participation in planned Congress activities in August 2020 in Amsterdam.

 

Task Force members introduced themselves and provided brief information on their background. After long discussion participants decided which session are important for patients, patients advocate and public to be relevant in the Congress agenda. They also focused their energy on defining the  Mission and Vision of  GAPPA.

Dietary Training in Columna Medica

Healthy diet is important in maintaining good health.  It can also play an important role in preventing chronic diseases, and an overall sense of wellbeing and vitality.  The training was focused on these important issues  and  it was a theme for the meeting.  Thirty participants who went to Columna Medica in Lask Poland, a health resort surrounded by one-hundred-year-old pine treesduring a beautiful fall day in October 2019.  Our focus for the day was how to have a healthy life using diet and exercise.


Kasia Madalinska,a dietician, spoke about the importance of a balanced diet,including the types of food that we should include in our meals each day. Ms. Madalinskashared what we should do while at the gym, laying out steps for beginners and working our way up to a program that we could do as a daily routine to keep healthy.  She also talked about the importance of managing both our daily diet and exercise we do  at the gym or home to achieve the best results.

Moving Measurement into Action

Salzburg Global Seminar

Redesigning a Global Framework for Measuring Patient Safety’ was the theme of the meeting  organized in Salzburg, Austria, from 5 to 10 September 2019.

This meeting brought together 50 participants, including global healthcare leaders, researchers and design thinkers, patients, providers, and experts in measurement, quality improvement, operations, and informatics from measurement and patient safety-focused organizations from around the globe.

The program had a strong focus on synthesizing experience from different settings, and focused on cross-continuum measures that support the safety of patients and the healthcare workforce with the ultimate aim of developing design principles and a framework of actionable areas of measurement focused on learning and improvement.

Regina Namata Kamoga from Uganda and Jolanta Bilinska from Poland represented World Patients Alliance on this meeting.

PAIN: Validation and Dignity

 

We have spent a lot of time talking about the best way to describe one’s pain.  The American Chronic Pain Association  has pain maps that help you show the intensity of your pain, where it is, and  how it feels, explain what makes it worse, and for some, the symptoms they experience.  https://www.theacpa.org/pain-management-tools/communication-tools/tracking-tools/

These maps have been effective in helping people describe their pain so that the health care professional will better understand the pain.   Why is it important that the ACPA  provide these to people with pain?  One very simple answer is that more than anything, a person living with pain wants to have his or her pain validated.  We want their health care professionals to know that our pain is real.  When a person has to “prove the pain” they become very defensive and visits to the health care professional don’t always go well.

If pain management is to be beneficial, the person with pain and the health care professional must work together as a team. If there is doubt about the pain , it gets in the way of working toward a means to live with the pain, to learn how to manage it so that you can return to a better quality of life and increase your function while reducing your sense of suffering.  Anyone who has lived with pain for a long time knows that when all is said and done, there may still be some level of pain that they will have to live with.  But to live with pain and exist with pain are two very different things.

When a person’s report of pain is believed, it calms their defensiveness and can help them work toward managing their pain.  Interestingly, it also provides some sense of dignity to know that someone understands that they are in pain.  If you think about it, no one wants to live with pain. To have pain and be questioned about the reality of the pain is extremely difficult to handle and depressing.  When a person is believed about their pain,  they will be treated with the same respect and dignity as anyone else.

Recently the American Chronic Pain Association and some if its members took part in a project called This Is Pain.  Seven members were selected and flown to New York to tell their stories to a visual artist, Trina Merry, who translated their stories into a beautiful work of art on their bodies.  When asked about the experience, one of the things that stood out to me was that each person had been treated with dignity and respect.  I think the fact that the artist believed their stories, listened to what they had to say, and was able to capture each story in such stunning  artistry speaks volumes.   I invite you to see their pictures and hear their stories as we explore This Is Pain.

This is Pain

Over the years, the American Chronic Pain Association  has developed many tools to help you better communicate your pain to your health care professional.  They are easy, free, and help you make the most of your time with your health care professional by providing a picture of your pain.  While these pain maps are useful tools for you, several of our ACPA members had the opportunity to go an extra step when describing their pain.

Seven ACPA group facilitators were selected to tell their pain journey to an artist, Trina Merry, who depicted their story on the body of that person.  Once completed, they were made into life size posters and displayed at the Oculus in New York City from December 12 to 15, 2019.  You can hear the participants tell their stories and see it being created on their bodies at www.thisispain.com.

We asked each of them to share what this experience meant to them.  In their own words here are their comments.

Alan Zanetell

Facilitator Englewood, Colorado Chapter

Al’s chronic pain began in 1966.  Nearly two dozen surgeries (including twelve spinal fusions) later, Al’s entire adult life has been dominated by finding ways to cope with chronic pain each day.  He described his pain as hot lava that courses throughout his body, burning into each and every muscle, like a volcano erupting.

I want to express my appreciation for being given the opportunity to participate in This Is Pain.I couldn't be more honored than to be chosen as one of the participants. What a strong validation of dealing with chronic pain for over 50 years.

The opportunity to have a major part in This Is Pain has given a great ending to what had been a difficult 2019. The replies are amazing from so many dealing with pain everyday of their life. I, along with the program, an making differences in many lives.

But, more than that, I feel strongly about telling my story with the hope it may reach and help untold number of pain suffers. Even throughout more decades than I care to count, I know I and others can rise above their pain daily by expressing and acting upon that desire.

Thank you for this wonderful opportunity. So, how did I know 54 years of chronic pain would give me the opportunities to help others?

Cindi Scheib

Facilitator Harrisburg , Pennsylvania Chapter

Cindi's life was turned upside down over labor Day Weekend, 2014.  She started experiencing pain all over her body, which she describes as feeling like cactus splinters driving into her body incessantly.  These jabbing sensations have deeply affected her quality of life.  Yet Cindi has never let chronic pain define who she is as a person, and remains grateful for things she does have in life—her loving sister, her friends, and the ability to give back by working with the American Chronic Pain Association.

Gosh, it was so wonderful to meet you all at the event! I had the most outstanding and incredible experience working with the This is Pain project!  Literally, I feel that it was a highlight of my life! I was treated so wonderfully, and felt so respected and honored! From the moment I left my home, until the moment I arrived home, I was treated like a queen. During the interview, I felt heard. Everyone was so accommodating and empathic and they truly seemed engaged in hearing my story. During the painting process, I felt respected! I have never allowed myself to be so vulnerable, “ naked” in front of a whole crew of people. But I knew that this was a once in a lifetime opportunity, to be painted by Trina Merry! They allowed me to have some wine to help me relax, and they played my choice of music... and I still can’t believe that I stood there for 7 hours of painting and never had to go to the bathroom! Initially, I wore the black robe, but after the first hour, I was just exposed and naked to everyone. However, everyone was so professional and courteous to me and to my sister. It was incredible that I became comfortable with being painted naked with so many people watching! ( I think the wine helped. LOL) By the way, the catered food was so delicious and my hotel room was perfect. Thank  you ACPA for allowing me to be involved in this project! 

Shannon Green

Facilitator Austin, Texas Chapter

Shannon, a wife and mother, lives with chronic pain every day.  She describes her pain as a tornado powering through her body, leaving a path of destruction in its wake.  Shannon believes kindness is the key to making life easier for those living with this condition, as simple acts of compassion can make even the hardest of days seems a little more manageable.

The opportunity to meet people with shared experience was invaluable. The amazing Trina Merry painted a tornado scene on my back. It was interesting to see how pain was interpreted so differently among us.

 

The NYC trip gave me my confidence back. I was able to walk 6 miles in one day which was a big surprise for me. This prompted my new goal of 8,000 steps per day. This new goal is a game changer. I am so thankful to the American Chronic Pain Association for this opportunity.

Tom Norris

Facilitator, Los Angeles, California Chapter

Tom is a military veteran whose career was cut short due to the onset of chronic pain – an experience he describes as wrestling a tiger that is on fire.  He hopes that by sharing his story, people everywhere will develop an understanding of what living with chronic pain truly feels like.

When I was first approached about participating in this effort to “show” chronic pain, I had my doubts.  I thought body painting had died out in the 80’s!  Boy, was I wrong!

The pictures of Trina’s interpretation of my back and referred abdominal pain has become a standard part of my group and individual sessions.  It is amazing just how useful this illustration is in getting someone’s attention.

I had a ball participating in This is Pain!

 

Every facet of participating in this campaign was first class!  At every turn, I was treated with respect and courtesy.  Every detail of my interviews, journey to and from New York, car arrangements in New York City, hotel accommodations, and filming was taken care in such a manner that I knew this was a very important effort!

The organizers made extra efforts to take care of each of us.  I was amazed at the ease with which my requirements were accommodated.  I was able to get extra leg room for each of my flights and had no problem getting wheelchair accommodating transportation to and from the airports.  The organizers were able to make sure I had the extra day at either end of the trip to recover to “be my best” for the interview and camera. The room at the hotel was handicapped accessible and was great!

Frankly, I was surprised at how “low stress” the interview and painting schedule was for me.  I felt I was part of the team and integral to the production schedule.  I was interviewed on camera by the director and never felt any stress or pressure.  The director was extremely personable and interested in me and my journey with chronic pain.  I felt I found a friend.

When my turn came to get painted, Trina and her associate put me totally at ease.  Although I was a little leery of being in underwear in front of a group of women (I joked that I had been naked in front of only my wife for the last 31 years!), the entire situation was not stressful or strange at all.  Everyone was professional and there to get a job done.  Although I was a little stiff by the time the painting session was finished, the result was worth it.

I was touched by the care with which everyone treated me.  An assistant even offered to help me get the paint off my back after the photography session was complete.

When I had problems with flight on the way home, I was able to reach out and contact the program coordinator to easily resolve the problem.

From start to finish, this was an amazing effort that was well coordinated and organized.  I understand that each of us was treated with respect and courtesy through the effort.

Thank you ACPA for arranging my participation in this amazing effort to educate everyone about chronic pain.

I would jump at the opportunity to do this again.

Trish Walsh

Facilitator, Latrobe, Pennsylvania Chapter

Trish has been living with chronic pain for 32 years.  She battles chronic pain in her knees, making it difficult to stand, walk or even sit comfortably at times.  Trish wants the world to know that chronic pain is real and that those that live with this condition face enormous challengers each and every day.

My trip to New York City as part of the “This is Pain” campaign was both exciting and scary at the same time. I was so surprised to get the call about participating and very honored to be chosen. The fact that I had never been on a plane or to a big city did make me question myself but passing on this opportunity was not an option. I have been trying to help give those who suffer with chronic pain a voice for more than 20 years. There was no reason to be afraid because each and every detail was seamlessly coordinated by the Mission team. From car service to and from the airport, and each day to the studio, to the fabulous catered meals each day on set. No stone was left unturned. The on-camera interview was incredible. I received a peek at what it was like to be on TV. The entire production crew was wonderful and made me feel calm and comfortable.

The painting session with Trina Merry was unbelievable. Her vision to bring the pain of each participant to life was  spectacular. Lastly, the “networking” breakfast set for the final day of my journey gave me the chance to meet not only other ACPA group leaders, but also some of the people from BioDelivery Sciences International, Inc. Everyone’s excitement in hearing our stories could only be described as amazing---total respect from each person. Although I was exhausted when I arrived home it was a fantastic voyage that I am extremely proud to be involved with.

Catherine Cartwright

Facilitator, Vallejo, California Chapter

Catherine has lived with the effects of chronic pain, both on her body and on the relationships with those around her, for 21 years.  While she often struggles to maintain her independence, Catherine channels the power of a positive mindset to help cope with her condition and is committed to being the victor over her circumstance.

I had the honor and privilege to be a part of the “This is Pain” Exhibit in New York City. It was one of the most exciting events in my life.

It brought light to chronic pain, especially invisible pain. Most people feel if you can’t see it, it isn’t real. For the first time in my chronic pain history I felt this would validate my invisible pain outside of my medical and support system. Now it has a voice not just for me, for others as well.

Having my whole body painted was an awesome experience in itself. The strings represented how my Fibromyalgia feels, like a phone or electric main box wires being pulled all at the same time. Being porcelain described for me the stiffness of my osteoarthritis.

The interview served to highlight and describe the facts of how life is for people who live their lives in spite of chronic pain. We are victorious.

The main point is to acknowledge and bring awareness to the public that people in chronic pain; the visible as well as the invisible now has a face and place in pain history.

I would like to sincerely thank the This is Pain staff, Trina Merry, the artist, and  all others who were a part of this great work and the American Chronic Pain Association for this experience and being my beacon of light.

Patricia Hubert

Facilitator Berkeley Heights, NJ  Chapter

Patricia’s  life with chronic pain began in 2003 following an injury sustained during yoga practice.  She describes her pain as burning, electric lighting bolts sending shockwaves through her body.  Patricia’s hope is that everyone living with chronic pain can be heard and believed, no matter the cause.

I am pleased to have had the opportunity to participate in the This is Pain initiative this past November.  I was able to convey the pain experience, what it really feels like, and to share the journey I’ve had with pain which persisted following a spinal injury 17 years ago, eventually becoming chronic.  Furthermore, I was able to describe the impact it has had on my life.

 

When I received the request to participate in my inbox I thought I was too busy.  But the nagging voice in my head told me:  Pat, you have to do this for everyone with chronic pain.  We need to be heard and understood. This is an ethical/moral decision.  I retrieved the email and entered my data, figuring that would probably be the end of it. When I was subsequently contacted by the person who would interview me, I was impressed with her masterful questioning which built on my responses and prodded me to think deeper.  She, and a second interviewer, were very respectful of my need to pause at times to further reflect on the deep hurt, the feelings of isolation, and of being alone in my suffering.  I was brought to tears and they allowed me those tears.  I was able to be vulnerable with them due to their sensitivity, and I really appreciated it.  Further, it helped me realize I still have feelings which needed to be acknowledged and reconciled.

The artist later interviewed me directly and asked for my description of the pain sensation. She also asked what color it is—something I never thought about. My pain begins in my buttock and continues down one leg. Because of the location I was not comfortable with the artist paining directly onto my skin.  A model was used for the actual painting of my pain, which is neuropathic and variable based on the time of day, activity level and other factors.  At various times it pulls, burns, is sharp, dull, hot, or shock like. There are times when nothing will calm it.  I’ll change position, walk around, etc. and it changes the intensity slightly.

 I also have knee pain on the same side from an injury and have altered pain sensation there, called allodynia, which is actually a decrease in the knee pain intensity.  We stayed in a great hotel in the East Village and were all together only once for a great breakfast.  I believe the others were quite brave for having their bodies painted.  The artist took quite a bit of artistic liberty with her representation of my pain using a reverse blue light technique.  She painted my pain as widespread bodily pain.  I cannot even imagine how I’d cope with that.

I know that the invisible nature of pain is often a barrier.  It is my hope that the This is Pain initiative will make a difference in removing this barrier.  The director of filming was an attentive young man who asked great questions and was quite sensitive and truly interested in what I had to say to his pointed questions.  He later confided that his wife has chronic pain and this experience interviewing people with pain has caused him to feel regret for his prior relative lack of understanding of her true suffering.  He said he called her the first day at a break and each evening has apologized for his lack of understanding before. This tells me something about chipping away at barriers.

 
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