“Patients Rights Have No Borders” Campaign

Member News

ADDCA & ACN

 

To celebrate the 10th Anniversary of the European Patients’ Rights Day, Active Citizenship Network started a widespread campaign in 2016 in cooperation with some of the national patient associations involved in its network.

In Portugal, the campaign is carried out by Associação de Doentes de Dor Crónica dos Açores / Chronic Pain Patients Association of Azores.

 

About the Campaign

Framework
Patients want to access cross-border health services when treatment is not available in their home country when it is managed better elsewhere, or, as in the case of many border areas, when the nearest available care is in another Member State. Currently, cross-border healthcare accounts for approximately 1% of the overall EU public health spending – around €10 billion per year.

Objectives
The main aims of the communication campaign are:

  • To improve the awareness of citizens and patients about their rights to go abroad for care.
  • To build a network of patient/healthcare users’ organizations all around Europe, able to provide information and collect data on cross-border healthcare. Indeed, thanks to the identification of referent associations in each EU Member State, patients could contact a local patient/civic organization in case of need for advice or support during their stay abroad.
  • To enable patient/healthcare users’ organizations, to easily contact their counterpart in another country to get specific information on the local healthcare system – with a focus on the implementation of patients’ rights – to help citizens.
  • To contribute to collecting data about this issue
  • To get in touch with National Contact Points and institutions accountable for cross-border healthcare management.

Campaign description by: Cittadinnanzativa (ACN)

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100 Cities against Pain 2017

Member news

ISAL Foundation

 

On Saturday 7th October 2017, Fondazione ISAL organized the ninth edition of the Day “100 cities against pain”. The event was supported by the major political and scientific institutions and has received the Medal of the President of the Italian Republic for its public value. As on previous years, PAE, MEPs, and EFIC have given their support to the initiative.

ISAL 100 Cities agains Pain 2017

The aim of “100 cities against pain” is to provide citizens with free consultations and with information concerning their therapeutic options and the locality of the centers for the treatment of chronic pain and to sensitize society, the media, and institutions regarding the problem of chronic pain and of its treatment.

On Saturday 7th October, and during the previous and following weeks, in more than 130 cities in Italy and abroad (Malta, Spain, Ireland, Azores), pain physicians, volunteers, and patients’ associations were in the main squares and hospitals to state the right not to suffer.

In Italy, more than 13 million people suffer from chronic pain but as a survey of Fondazione ISAL reveals, only 26% of them know that there are specialized treatment centers for chronic pain. At the same time, the majority of people consider chronic pain as a real disease.

This Day has been supported also by an online campaign on social media, #zeropain17 which has collected hundreds of pictures of people saying No! to pain.

100 Cities Against Pain 2017 PAE Endorsement from PAE President, Mr. Joop Van Griensvenon Vimeo.

 

 

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In Route of Pain – from Europe to Ponta Delgada

Member News

ADDCA

Next 28 October, the Chronic Pain Patients Association of Azores, ADDCA, celebrates his 12th anniversary with a scientific event (In Route of Pain – from Europe to Ponta Delgada), where we wait for the presence of patients, professionals, public and media.

This symposium is supported by the Portuguese Chapter of EFIC, Associação Portuguesa para o Estudo da Dor, APED and by the Portuguese MEP, Sofia Ribeiro, member of the MEPs’ Interest Group “European Patients’ Rights and Cross-border Healthcare”.

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Pain and Family

Member News

ADDCA

In September ADDCA went on with the conferences to members and public, with twenty-five attendances. We publicized this topic with an article in a local newspaper.  The nurse, Sandra Silva, dedicated studies about the Caregivers of patients with Chronic Diseases, particularly Chronic Pain:

 «About 25% of patients feel that Chronic Pain leads to the destruction of relationships with family and friends. Family members of the chronically ill should be informed about their active role as caregivers, learning how to manage interpersonal and family relationships.

 It is usually the families who look after their elderly, especially their closest relatives, mostly wives, daughters, daughters-in-law. Thus, they accumulate work and stress when fulfilling the tasks related to care, like being a parent, a partner and having as well a professional life, so that often they themselves feel physically and mentally debilitated; they manifest feelings of frustration, anxiety, restlessness and a constant worry, symptoms that lead to social isolation if there is no prevention and attention to these problems.

 

This reality is unquestionable, and today the family is the main source of support for the dependent elderly, in the sense of maintaining the person in their own home. It is the family member who supports the needs of the elderly in cases of illness at home.

 The elderly person himself waits for pain as his age progresses, avoiding to verbalize it so as not to be hospitalized, to perform complementary diagnostic tests, painful treatments and to avoid loss of independence, becoming itself an obstacle to the correct evaluation and treatment of pain. However, because there is still a social conviction that older people are less sensitive to pain, most people view it as a normal fact for their age, which causes chronic pain to be under-reported and not effectively treated. It is usually a severe pain caused by the progression of the disease, the consequences of therapeutic interventions, such as radiotherapy, or psychological reactions, which makes its treatment difficult due to the complexity of multiple intervening factors»

The fight against the pain in the elderly is a multidisciplinary task. It needs a partnership between the elderly/family, primary health care, hospital care, social institutions. It should be oriented towards prevention, based on strategies that facilitate care and caring for the elderly at home, not forgetting that the feelings and reality that families experience when caring for their elderly relative with chronic pain at home, as well as the quality of life depends greatly on the relief of pain.

 

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Exclusive support groups for CRPS

Member News

Thera Wanka

The new French PAE member, Association Thera Wanka, announces among its activities an interesting initiative aimed to improve the condition of CRPS patients: the implementation of the first exclusive support groups for CRPS (algodystrophy, algoneurodystrophy ) patients.

“We have noticed that CRPS patients are often taken for granted. Thanks to this group, the patients can be listened to, they can express themselves without any judgment” says Corine Cliquet, president of the association Thera Wanka.

These support groups are set up every 3rd week and are animated by the psychologist Céline Serres and Corine Cliquet – nurse and psycho-practitioner in EFT and NLP, also president of the association.

More information on the Association Thera Wanka’s  website.

 

 

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Nine scientific societies speak of pain from an integral view

Member News

Sine Dolore

Nine scientific societies speak of pain from an integral view
Menorca, October 18, 2017


Nine scientific societies will gather this Saturday in Punta Prima to address the pain in an integral and multidisciplinary way. It is the first event to be held on the island and aims to meet the different needs of medical, scientific and health specialties and share challenges in research, training, and healthcare. This initiative places the island “at the epicenter of the fight against pain and improving the quality of life of patients and their families,” says Sine Dolore European Pain Foundation President Jordi Moya.

On this first occasion, the summit will bring together nine companies, among them the labor trauma, rehabilitation, primary care physicians, anesthesia physiotherapy or the Andalusian Society of Pain and Continued Assistance, among others. The meeting will be moderated by Dr. Luis Miguel Torres, from the University of Cadiz.
Jordi Moya says it is “the first summit of the G9 linked to the treatment of pain” with the aim that next year can hold the second edition of the summit with the largest number of societies involved. This event is part of the VI Multidisciplinary Pain Meeting Master
Class which will have more than 100 attendees and will take place on Saturday and
Sunday at the Hotel Occidental Menorca.

Simultaneously, the Sine Dolore International School will be held on Friday for relatives and patients with pain. The Councilor for Social Welfare and Family, Maria Cabrisas, said yesterday that “activities like this help to visualize the day-to-day of people with pain and to enhance improvements in their quality of life.”

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“Fibromyalgiportalen” – A Health Portal for Managing Fibromyalgia

Member News
The Fibromyalgia Association of Sweden (Fibromyalgiförbundet)

 

The Fibromyalgia Association of Sweden (Fibromyalgiförbundet) has been granted money from a state fund to run a project that will benefit those suffering from fibromyalgia. The goal of the project is to develop an interactive digital platform which will serve as a forum to share information relevant to managing the disease. We will strive to provide various tools for self-care and personal health. There will be a knowledgeable and experienced health coach available for motivational support and advice.  We want fibromyalgia patients to have access to the health portal free of charge and in the comfort of their own home. The portal will address areas such as physical activity, stress, pain, sleep, diet and social issues. There will be interactive tutorials, programs and information in the form of pictures, films, text and audio files with emphasis on visual feedback and notifications for monitoring progress. The users can live chat and directly contact coaches and peers to share experiences and provide motivational support. The content of the portal is based on market analysis and professional experience and will be under continuous improvement and development over the next few years.  Our aim is to have a beta-version ready at the end of 2017 and will be opened to the public during 2018. Our vision with the project is to relieve the healthcare system, provide methods for promoting self-efficacy and ultimately contribute to increased quality of life among sufferers of fibromyalgia. The users will have a great influence in how the interactive platform will take shape throughout the project. The project managers are currently comparing platform alternatives and working on content development and marketing strategies. Sweden has a national aim to be at the forefront of digital healthcare by 2025 and we are very excited to be part of this initiative through our project. We hope to provide our users with more independence and participation in society.

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“Patients as teachers in Health Professional Education” Award

Member News
The Pelvic Pain Support Network

The European Civic Prize on Chronic Pain Award Ceremony

Bron Canwell, a member of the Pelvic Pain Support Network, has kindly shared with our editors her insights after participating in and winning a specific category of The European Civic Prize on Chronic Pain.

“Two members of the Pelvic Pain Support network – Bron Canwell and Fiona Brown – were very excited to be invited to join in the Symposium on the Societal Impact of Pain in Malta, and were delighted to receive one of the first European Civic Prizes on Chronic Pain. The President of Malta, Marie-Louise Coleiro Preca, made an inspiring speech and presented the prizes.

Marie-Louise Coleiro PrecaShe had great insight into the impact of pain on individual lives, and the wider impact on society.  The symposium was a wonderful opportunity to meet a range of people from all European countries who share the goal of improving the lives of people with chronic pain. The situation was a lovely hotel by the harbour in Valletta.

The prize was awarded to us in the category “Patients as teachers in Health Professional Education”.  We have delivered sessions to nurses since 2009 and to doctors since 2016 in Leeds and Southampton. Feedback from our sessions shows that the students value our sessions highly. We have been very lucky to collaborate with lecturers/academic staff who are committed to the value of patient input. It was apparent from talking to other attendees at the symposium that our sessions are very innovative.

As a sufferer from pain, I have returned from Malta feeling very positive that there will be progress and very committed to helping that happen.”

 

 

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TNA UK Joint Patient & Healthcare Professionals Conference

Member News
Trigeminal Neuralgia Association (TNA UK)

 

Introduction

The conference was held at the Holiday Inn Hotel, Carburton Street, London, in two adjoining rooms (the Oxford & Cambridge business suites). The day was attended by a wide range of healthcare practitioners (HCPs) ranging from neurosurgeons, MS nurses, dentists to budding students, along with a large number of patients and carers.

The day was introduced by Mr Adrian Hale, chair of the Trigeminal Neuralgia Association (TNA UK), who welcomed everyone to the conference, which he hoped would be an enthralling day.

Session 1: Diagnosis

Professor Zakrzewska, chair of the Medical Advisory Board for TNA UK, started the day off with her talk on diagnosis. This was an interactive and engaging session that focused on integrating HCPs and patients. She invited four patients, with different diagnoses and history, to speak about their prior or current symptoms. The four patients respectively had experienced: typical TN, atypical TN, SUNA and TN secondary to multiple sclerosis. The histories were put before a medical panel containing a neurosurgeon (Mr Owen Sparrow), a neurologist (Prof. Turo Nurmikko) and a consultant of oral surgery (Prof. Tilly Loescher).

Following this interesting Q&A, Professor Zakrzewska continued her talk which highlighted the difficulty in reaching diagnosis (e.g. how cracked tooth syndrome and TN have a lot of overlap in their sensations). The overall impression given was that while every individual may have shared similarities in their presentation, each person will experience it differently. This leads to a difficulty in creating a simple questionnaire or a diagram that represents any one person’s experience.

Session 2: What does brain imaging tell us about trigeminal neuralgia?

Professor Turo Nurmikko presented on the usefulness of MRI scans in diagnosing and predicting treatment outcomes for trigeminal neuralgia. The session highlighted how MRIs have led to a reduced need to just open and ‘explore’ the posterior fossa. MRIs rarely gave false negatives (no compression/contact of the nerve). With the advancement of the MRI technology, it is now possible to differentiate between:

  • A contact between vessel & nerve.
  • A compression between the vessel & nerve.
  • A compression and pushing away of the nerve.

The session demonstrated how far imaging has come and its necessity in treatment planning for prediction of success in MVDs.

Rachel Coates and the University of Leeds

Dr Rachel Coats, a psychologist, made an appeal relating to a potential study on cognitive and motor impairment whilst on and off of medication. She asked members to contact her by email, if they wished to participate.  r.o.a.coats@leeds.ac.uk

TNA AGM

Chairman Adrian Hale delivered his annual report, highlighting all the work that the TNA UK had completed over the past year. The intention to amend the constitution by adding an object on supporting research was discussed. With some suggestions from the TNA UK membership, the motion was moved.

As per charity guidelines, three TNA trustees had to resign (and then were re-elected onto the committee). This year, it was Jeannette Moore, Doug Moore and Glenn Davies.

New Website

Dr Robert Coveney demonstrated the new website to the membership and professionals, highlighting how information had been made precise, concise and easier to access. Suggestions were offered by the membership which have been considered and applied as deemed necessary.

Session 3: Medications

This session focused on group activities. The membership jointly wrote down their first, second, third and – if applicable – their fourth prescribed medications. The effectiveness of each was discussed alongside why the medication was stopped (e.g. side effects or because the drug stopped providing pain relief.)

Meanwhile, the HCPs discussed what they believed were the best first and second line therapies for trigeminal neuralgia. The general consensus was carbamazepine should be the first line drug, as per NICE guidelines.

Professor Zakrzewska chaired this session and discussed the importance of establishing these guidelines, especially in the light of many patients not being prescribed carbamazepine as the first line drug. It highlighted the necessity of referring them to HCPs for more accurate treatment.

Session 4: Outcome measures in TN and why are they important?

An interactive session by Dr Richel Ni Riordain that honed in on what TN patients feel are the best measures of ‘success’ from a medication. Some examples included:

  • As few side effects as possible.
  • Better function in a work environment and being able to carry out daily activities.
  • Complete and long lasting remission from pain.
  • No interactions with other drugs.
  • Minimal or no loss of effectiveness with time
  • Generally better social interactions.

Through expert patient panels, such as the example conducted today, reviewing literature and further discussions with healthcare providers, this will allow us to be able to develop a true outcomes criterion for trigeminal neuralgia. Hopefully, this will lead to a questionnaire to help best plan effectively regulate and measure outcomes.

Session 5: Surgical outcomes

The final session of the day had a harrowing, insightful and eye-opening beginning.  Anne Eastman related her journey through diagnosis and treatment. Her tale, which spoke of her misdiagnosis and journey through fear into pain-free life, was hard-hitting.

Mr Owen Sparrow, a retired neurosurgeon, and his colleague, Imran Noorani, discussed the surgical outcomes based on 30 years of data they have followed up. Mr Sparrow summarised the different surgical modalities that were used for the treatment of TN, including MVD, internal neurolysis, various rhizotomy procedures, etc.  Microvascular decompressions (MVD) are one of the only surgeries that have a good long-term reliable data (70% success of being pain-free at 5 years).

Mr Noorani highlighted that older patients tended to have less MVDs and more needle-based procedures. He highlighted that if there is a reoccurrence of pain, usually the pain returns at a much-reduced level which means that medication is usually effective. Long-term pain relief statistics are the same, no matter what vessel (be it vein or artery) is moved.

The final part of this session was presented by Professor Tilly Loecher who spoke about stereotactic radiosurgery (sometimes called gamma knife). This is where a high dose of radiation is delivered into a specific location. Originally designed for minimally invasive treatment of brain tumours, it has now evolved for use in other conditions, such as TN. Currently, TN is only commissioned (on the NHS) to be treated in two units – London & Sheffield. In discussing outcomes of stereotactic radiosurgery, satisfaction varied based on pain relief and the side-effects thereafter. A high proportion of patients will get numbness following treatment and a 5% proportion will get ‘painful numbness’ or dysesthesia.

The sessions all highlighted the need to carefully plan, weigh up the choices and not to rush into anything.

Closing of the conference

Mr Adrian Hale, chairman, closed the conference, not before thanking all the speakers for their time today and the membership for coming. Mr Owen Sparrow was presented with an engraved letter-opening knife as a thank you for his services to TNA UK and helping combat trigeminal neuralgia.

The present report has been provided by Dr Robert Coveney, Dental Surgeon and Trustee

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Galician Rheumatological League (LRG) Calendar of events

Member News
Galician Rheumatological League (LRG)

February

CHILDREN AND RHEUMATIC DISEASES

The Galician Rheumatological League (LRG) organized a workshop for children with rheumatic diseases and their parents.

March

WORKSHOP

In March, the LRG organized a workshop on the Management of Irritability for members who suffer from Chronic Pain

April

SOCIETAL INFORMATION CAMPAIGN

LRG Societal Info CampaignIn April the LRG organized 3 more informative and preventive sessions about rheumatological diseases. In these conferences, we normally get the participation of a rheumatologist, a board member, our occupational therapist and/or our psychologist.

MEETING WITH HEALTH AUTHORITIES

Our President Ana Vázquez and 2 members of our technic workers attended a meeting with Galician Health Authorities regarding the electronic platform, called E-SAÚDE, where Galician residents can access their health issues. We were promised that associations will participate in the further development of the E-Platform.

May

CONGRESS OF PRIMARY CARE DOCTORS – PATIENTS YESTERDAY, PROTAGONISTS TODAY

 SEMERGEN CongressThe LRG was invited to participate in the 5th National Congress of SEMERGEN (Spanish Society of Primary Care Doctors). The Congress took place in Pontevedra on May 4th and 5th. Six of our members attended.

Our president participated in a roundtable debate on the topic of electronics in health care. (see the picture below).

Our League presented a poster about insertion in the workplace for people with Rheumatic diseases.

There were workshops about Doctor Google, rheumatoid arthritis, etc

There were several interesting roundtable debates about mental health, rare diseases, the 4 different types of osteoarthritis and their treatment, the electronic platform which all Spanish people can use about illnesses and patients of our autonomic region of Spain can contact about their personal health file.

CONCERT

On May 3rd, about 150 persons attended a concert of the group PRIME MINISTERS. The objective is awareness of rheumatic illnesses amongst the youngsters.

FUTURE OF EUROPE WITH ITALIAN AMBASSADOR

On May 8th, we were invited to attend a conference about the future of Europe in Santiago de Compostela, by Mr Stefano Sannino, the Italian ambassador in Spain. The photograph at the left shows the ambassador, the vice-president of the Galician Government, the vice-president of our League, Mrs Antonia Pombo and Jose León, our general manager.

NATIONAL PLATFORM OF INCAPACITY

On May 8th in our office, we had a meeting with the Galician Delegation of the National Representative Platform of Persons with Physical Incapacity. This entity has existed for 30 years and offered us diverse activities (accessible holidays, information about accessible sites, tourism and bars/restaurants, etc.) for our members. They represent almost 100,000 persons with physical incapacity.

MEETING WITH THE MAYOR OF TOWN

LRG Meeting the MayorThe mayor of our town and other local authorities visited the Civic Centre in Coruña where our League has its headquarters in order to know the needs of the people of that part of town. Our president and general manager were invited too and explained the structural ameliorations the Centre needs.

FUNDRAISING RUN

LRG charity run in a school of CoruñaOn May 17th, the Day of Galician Language, the LRG, together with the Club Maristas, organized a charity run in that school of Coruña, in order to join funds for our social health programmes and for the visibility of RMDs. There were several competitions in different categories. There were medals and gifts for the children.

MUSIC IN SUPPORT OF THE LRG

7 SETENTAOn May 20th, we enjoyed the first of a series of rock concerts which the group “7 SETENTA” will perform in our whole autonomic region, in order to help us with making RMDs more visible and to fundraise for our League. Many people in the town of Ribeira had a great time with a party day to support the League, with tapas, donations, selling chocolate bones and enjoying Rock and Roll.

SCHOLARSHIP FOR WEB

LRG-scholarshipOur League has been selected by a Foundation, together with 9 other big social entities in our Autonomic Region of Spain, to receive an important scholarship to ameliorate/recreate our web regarding structure, design, and functionality. On May 30th the Official Reception took place, with an article in newspapers.

MEETING WITH AUTHORITIES

Meeting E-SAÚDEOn May 30th, our city government started an initiative to create a Sectorial Advisory Board of Health, so they can become an observer of the Health of the Citizens, relying on different health agents – such as patient associations, institutions, and authorities involved in health. It will also serve to offer solutions to more specific aspects of our city, but from several points of view (health in the workplace, environmental health, etc.)

 

June

CONFERENCES

Liga galega June 6 ConferenceOn June 6th we had a conference about sexuality and familial planning, for people with a rheumatic illness.

On June 9th LRG has organised a conference with a collaborating rheumatologist about biologic treatment for members of our League.

EXCURSION WEEKEND

During the weekend of June 10 and 11, the LRG, organized – as part of its recreational activities – a weekend in a spa and visit to another region in our Autonomic region (Ribeira Sacra).m This was a weekend of rest and fun spent with friends and family.

OUR STARS

AS NOSAS ESTRELAS Festival

On June 18th a festival OUR STARS (AS NOSAS ESTRELAS) took place in order to obtain funds for the LRG. About 20 youngsters danced and sung in a contest presented by Miss Spain 7 Continentes, Zulema Vázquez. Then a video about the LRG was projected.

 

 

 

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