Posts by Jane Giudice
Annual General Meeting 2021-President’s Speech and welcome to Dr. Chris Vassallo, Guest Speaker – Current and new medicines for RMD’s
We thank you for joining us at our 15th Annual General Meeting. Our last Annual General Meeting was held on 31st July 2020. This is the second AGM during the Covid-19 pandemic, although last year we managed to meet face to face with great respect to mitigation measures as announced by the Health Authorities at the time. Mrs. Vella informed all present that Mrs. Sina Bugeja, ARAM’s Vice-President will moderate this year’s virtual AGM. Whilst I welcome you to this year’s Annual General Meeting, I start by thanking the Executive Committee Members of ARAM for their ongoing hard work and dedication and for the valuable work each one is doing voluntarily. I am happy to note that all our patient members are very appreciative of our input towards the Association. For us all this year was not an easy year, however, we found alternative ways how to remain in touch with our treasured members. I wish to give you a very brief account of all the activities carried out by ARAM since our last AGM in July 2020. The issue of the change and switching of medicines to patients suffering from any type of Arthritis that occurred at the pharmacy level (without the consultation of one’s specialist). As a patient organization we are working very hard to ensure that the EULAR recommendations are respected and undertaken by the authorities. We are currently in communications with the Ombudsman (Health) to ensure that our patient members will receive the best possible treatment. I take this opportunity to thank ARAM members who shared their personal experiences through printed and social media. We celebrated World Arthritis Day 2020 with a virtual conference on the 21st of October 2020. Thanks to the support offered by Vivian Corporation Malta we managed to organize a very well attended conference. Amongst the distinguished guests who contributed towards the success of the conference, we had The Commissioner for Mental Health, Dr. John M Cachia, Dr. Patrick Galea who talked about E-Health and the importance of telemedicine in the health system. Thereafter, Mr. Sebastian Micallef shared his experience as a patient. He spoke about his personal experience and how he found E-Health useful especially throughout the time of the pandemic. The President, Mrs. Vella proceeded to give a brief account of current tasks being undertaken by the Executive Committee for the year 2021, namely, our applications for funds presented to Malta Council for the Voluntary Sector (Emergency Funds and SIS Funds; two research programs with regards to Osteoarthritis, one on a national level and another on a bigger scale on a Pan-European level; the upcoming AGORA conference hosted by ARAM on the occasion of its 10th Anniversary; the launch of two subgroups, one launched today, Young ARAM Group, as well in the coming weeks, the launch of the GOZO ARAM Group; as well as the Transfer of Knowledge Program in conjunction with EULAR and Arthritis Ireland.Mrs Vella once again thanked all for attending this year’s Annual General Meeting and sought approval from members present of the Minutes of last year’s AGM as well as the Financial Report for the year 2020 presented at this AGM.
Covid-19 Campaign: Adherence to Medical Appointments
On the occasion of World Health Day, and on the initiative of Vivian Corporation Malta, and, in collaboration with Malta Health Network and Malta Health Promotion and Disease Prevention Directorate ARAM’s president Mrs Mary Vella, conveys her message about the importance of maintaining our medical appointments at Mater Dei Hospital’s Outpatients Department, as well as, our family doctors and Specialist Consultants serving in the Health SectorThank you VivianMalta Health Network (MHN)Health Promotion and Disease Prevention Directorate
Empowering Leadership and Positive Governance 2020
ARAM’s Executive Committee and members congratulate Mrs Mary Vella on successfully completing the European Patients’ Forum online course ‘Capacity Building module on empowering leadership and positive governance 2020′ ARAM is affiliated to European Patients’ Forum through Malta Health Network (MHN)
Congratulations Mary Vella
December 2019 Newsletter Issue Number 2
December 2019 Newsletter Issue Number 2
Arthritis and Rheumatism Association Malta
P O Box 55 Birkirkara Malta
www.aramalta.com
Tel Nr: +35699259532
Email: aramalta@gmail.com
Facebook: Arthritis & Rheumatism Association Malta
Instagram: ARAM Malta
Twitter: @ArthritisMalta
YouTube: http://bit.ly/2vwtb7d
Dear Reader
We are pleased to issue our second half-yearly newsletter for 2019.
In this edition you will find an overview of some of the activities held during the last six months, giving a special mention to our events organised for our members.
As an association, we organise as many activities as possible for our members with special emphasis and highlight to regular exercise and an active lifestyle coupled with educational events in favour of a healthy Mediterranean diet and hygiene tips. For the first time in collaboration with Dar Kenn għal Sahhtek, and funded by the Small Initiatives Scheme, (Malta Council for the Voluntary Sector) a five-week programme was organised. Also in July, our members had the opportunity to attend a live-in, wherein a very full programme was offered to all who attended. In Summer ARAM Executive Committee members were busy working on diverse initiatives, also following up on the success of our participation in the European Week for Waste Reduction last year, ARAM is committed to continuing creating awareness about the proper disposal of medicinal waste. In October, World Arthritis Day was commemorated on the 21st October 2019 through a half-day conference held at Malta Parliament House. ARAM was honoured to host PARE President Mr Dieter Wiek to address this conference together with other key speakers whose contribution was greatly appreciated and fruitful. The EULAR Standing Committee of PARE gathers representatives of rheumatic and musculoskeletal user groups around Europe to work together towards improving the quality of life for the more than 120 million people in Europe living with these conditions. The committee’s vision is of people with rheumatic and musculoskeletal diseases in Europe being empowered to lead full and independent lives. The last event for the year was held at the Mdina Museum Cathedral, a visit to the Neapolitan crib at the Mdina Cathedral followed by a light lunch together in Rabat.
Please save the date for our next General Annual Meeting on the 31st March 2020 to be held at Hilltop Gardens, Naxxar. More information to follow.
Enjoy reading!
Mary Vella
President, Arthritis and Rheumatism Association Malta
The Personal Training and Healthy Eating Program: July 12th – August 9th 2019
This five-week programme was open to ARAM members on a voluntary basis, wherein a Physiotherapist developed and guided applicants through an exercise programme individually suited for every participant. A fitness evaluation assessment was mandatory before enrolment and a Lifestyle Questionnaire and health history including total disclosure of any prescribed medication were necessary. Every participant needed to obtain one’s physician’s permission to participate in the programme. Each weekly session lasted two hours, commencing with exercises on gym equipment held at the venue’s facilities for the first hour, followed by a professional nutritionist’s lecture about the recommended diet for persons living with Arthritis and Rheumatic Diseases.
Testimony was written by Mrs Phyllis Camilleri, an ARAM member
The Dar Kenn għal Saħħtek programme helped me a great deal to tackle my Arthritis problem with the help of its professional staff and the services provided proved to be an effective treatment. Something which I admired was how they analysed and assessed me upon enrolment. Throughout the programme, using a questionnaire, my progress was being maintained by a professional physiotherapist. The talks delivered by the professional nutritionist were most interesting and all in all this programme was tailored and suited for each individual. They advised me about the suitable food necessary to maintain my symptoms and to consume a suitable diet for my needs. This programme motivated me to perform physical activity in my every day life and exercise led me to enjoy a better lifestyle and a better quality of life. This five-week Nutrition and Exercise programme was very helpful for my overall health and I hope it will be included in the ARAM yearly calendar. A special thanks and a very big well done to all the ARAM committee members that organised this programme for us to enjoy.
ARAM Annual Live In Lunzjata Retreat House, Rabat, Malta
The live-In kicked off on 12th July 2019 at 4.30 pm and came to an end on the 14th July 2019. The programme for this weekend included a talk delivered by Mr Michael Dalmas B Pharm about Emotional Healing and Bach Flower Remedy System, a talk delivered by Ms Nathalie Muschamp, co-ordinator of dance therapy at Stepping up for Parkinsons, as well as a talk delivered by an official from Social Services about pensions, social support, etc. Also on the agenda was a very interesting talk delivered by Petra Spiteri, entitled Mindfulness and Adult Health. ARAM also screened two videos, namely Restless Lives, managing fatigue, sleep and pain and another video about managing Arthritis, the latter is a production of European League against Rheumatism.
During the live-in participants were encouraged to take short country walks in line with the vision that ARAM constantly advocates for an active lifestyle.
This project has been funded through the Voluntary Organisations Project Scheme managed by the Malta Council for the Voluntary Sector on behalf of Parliamentary Secretary for Youth, Sports and Voluntary Organisations within the Ministry for Education and Employment”. This project/publication reflects the views only of the author, and the MEDE and the MCVS cannot be held responsible for the content or any use which may be made of the information contained therein”
World Arthritis Day 2019 Malta: Don’t Delay Connect Today, Time2Work
The Arthritis and Rheumatism Association of Malta (ARAM) organised a national conference in Malta based on the EULAR ‘Time2Work’ campaign for 2019 which aims to raise more awareness on the importance of entering and staying in the place of work. The conference also discussed possible stumbling blocks with a view that these barriers will be discussed at the policy level to bring about the necessary improvements. This campaign aims to normalise work, to encourage persons suffering from RMD’s to seek employment and/or stay in employment, not to take on the sick role. The objectives include discussing what barriers interfere with peoples’ choice in work, working towards diminishing such barriers and above all, initiating a national discussion with the employers’ associations, unions and patients’ organizations on the best way forward. One of the patients Roderick Agius recalled how 6 years go, he was diagnosed with Psoriasis, which then developed into Psoriatic Arthritis. He explained that pain in his hand joints, wrists, knees and shoulders is constant and does not go away. Furthermore, he added that the discomfort created by society is sometimes greater than the physical one. “I don’t want people to pity me. All I want is that society is not conditioned by my situation”. Mr Agius argued that workers who suffer from arthritis, like him, deserve better working conditions without the need for begging. He recalled how every morning he needs to climb up 28 high steps to reach his office where he works, notwithstanding the pain and fatigue. Professor Andrew A. Borg DM(Manch.) MD DMed.Rehab(L) FRCP FACR CCT(UK)(Rheum.), Head, Rheumatology Service, Mater Dei Hospital and Chairman Government Formulary List Advisory Committee Head, Rheumatology Service, Mater Dei Hospital, crushed the myth that only elderly persons suffer from arthritis. He said that there is even a 3-month old baby that is being treated for Juvenile Arthritis. He stressed the importance that patients undergo early treatment so that they can live a normal life. However, Prof Borg said the main challenge is the high price of effective medicines. The President of ARAM, Mary Vella, said that there are around 60,000 Maltese people that suffer from arthritis. She explained that arthritis consists of 200 different types, with the most common are Osteoarthritis and Rheumatoid Arthritis, which is the worst condition of them all. It is a life-long and a life-threatening condition and if not taken care of, can cause serious consequences to internal organs and complications by causing deformities and physical impairment. The Vice-President of ARAM, Sina Bugeja, said that a survey conducted among patients showed that there are people who are trying to learn how to live with pain because they cannot afford treatment, with the average expense being €200 per month. The Speaker of the House of Representatives, Dr Anġlu Farrugia, thanked ARAM for its sterling work in contributing to raising more awareness about Arthritis in Malta. He said that ARAM serves as a bridge of information for the public in general and even for those patients of arthritis who are suffering in silence. The national conference served as a platform for people that suffer from Arthritis and RMD’s to share their story publicly to break the barriers and raise more awareness about their difficulties in their daily routine especially at the place of work.
Present during the conference, the Vice-President of EULAR, Dieter Wiek, as well as trade unions that represent workers and employer and other groups from civil society including the Commission for the Rights of Persons with Disability (CRPD).
Members of Parliament Hon Maria Deguara, Hon Stephen Spiteri and Hon Silvio Grixti also shared their thoughts during the national conference. Maltese MEPs serving at the European Parliament namely Hon Alex Agius Saliba, Hon Miriam Dalli, Hon Roberta Metsola and Hon Alfred Sant sounded their thoughts recorded messages.
Educational and cultural outing to Mdina in December 2019
An educational and cultural outing to the traditional Neapolitan crib featuring a collection of 18th-century crèche figurines on display at the Mdina Cathedral, Malta. Mons Edgar Vella, in my opinion, a walking encyclopedia, captured our attention with his detailed account about the history of this crib. It features 222 figurines in traditional period costumes of the different regions of the kingdom of Carlo III, king of the Bourbons. The figurines were manufactured and compiled over 25 years. The various episodes in this crib include the Mistero, which portrays the nativity of Jesus, together with Mary and Joseph, surmounted by the star of Bethlehem and a myriad of angels. This scene is complemented by the adoration of the shepherds and the Magi, with an entourage of exotic oriental characters that add to the opulence of the central episode. This cultural and educational event organised by ARAM was enjoyed by all who attended. Afterwards, ARAM members visited the Cathedral Museum, yet another jewel in the Old City Mdina. Thanks, Mons Edgar Vella, and the Curator and staff at the impeccable Museum.
The Editor hopes you have enjoyed this newsletter, look out for our next edition due in June 2020
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Arthritis, and RMD’s should NOT be an obstacle at work
NATIONAL CONFERENCE : HELD AT MALTA PARLIAMENT HOUSE ON 21/10/2019
THEME : DON’T DELAY, CONNECT TODAY:TIME2WORK
The Arthritis and Rheumatism Association of Malta (ARAM) organised a national conference in Malta based on the EULAR ‘Time2Work’ campaign for 2019 which aims to raise more awareness on the importance of entering and staying in the place of work. The conference also discussed possible stumbling blocks with a view that these barriers will be discussed at the policy level to bring about the necessary improvements.
The aims of this campaign are to normalise work, to encourage persons suffering from RMD’s to seek employment and/or stay in employment, not to take on the sick role. The objectives include discussing what barriers interfere with peoples’ choice in work, working towards diminishing such barriers and above all, initiating a national discussion with the employers’ associations, unions and patients’ organizations on the best way forward.
One of the patients Roderick Agius recalled how 6 years go, he was diagnosed with Psoriasis, which then developed into Psoriatic Arthritis. He explained that pain in his hand joints, wrists, knees and shoulders is constant and does not go away. Furthermore, he added that the discomfort created by society is sometimes greater than the physical one. “I don’t want people to pity me. All I want is that society is not conditioned by my situation”. Mr Agius argued that workers who suffer from arthritis, like him, deserve better working conditions without the need for begging. He recalled how every morning he needs to climb up 28 high steps to reach his office where he works, notwithstanding the pain and fatigue.
Professor Andrew A. Borg DM(Manch.) MD DMed.Rehab(L) FRCP FACR CCT(UK)(Rheum.), Chairman Government Formulary List Advisory Committee
Head, Rheumatology Service, Mater Dei Hospital, crushed the myth that only elderly persons suffer from arthritis. He said that there is even a 3-month old baby that is being treated for Juvenile Arthritis. He stressed the importance that patients undergo early treatment so that they can live a normal life. However, Prof Borg said the main challenge is the high price of effective medicines.
The President of ARAM, Mary Vella, said that there are around 60,000 Maltese people that suffer from arthritis. She explained that arthritis consists of 200 different types, with the most common are Osteoarthritis and Rheumatoid Arthritis, which is the worst condition of them all. It is a life-long and a life-threatening condition and if not taken care of, can cause serious consequences to internal organs and complications by causing deformities and physical impairment.
The Vice-President of ARAM, Sina Bugeja, said that a survey conducted among patients showed that there are people who are trying to learn how to live with pain because they cannot afford treatment, with the average expense being €200 per month.
The Speaker of the House of Representatives, Dr Anġlu Farrugia, thanked ARAM for its sterling work in contributing to raise more awareness about Arthritis in Malta. He said that ARAM serves as a bridge of information for the public in general and even for those patients of arthritis who are suffering in silence.
The national conference served as a platform for people that suffer from Arthritis and RMD’s to share their story publicly with the aim to break the barriers and raise more awareness about their difficulties in their daily routine especially at the place of work.
Present during the conference, the Vice-President of EULAR, Dieter Wiek, as well as trade unions that represent workers and employer and other groups from civil society including the Commission for the Rights of Persons with Disability (CRPD).
Members of Parliament Hon Maria Deguara, Hon Stephen Spiteri and Hon Silvio Grixti also shared their thoughts during the national conference. Maltese MEPS serving at the European Parliament namely Hon Alex Agius Saliba, Hon Miriam Dalli, Hon Roberta Metsola and Hon Alfred Sant sounded their thoughts recorded messages.
Copyright ©2019 ARAM. All Rights Reserved. – ARAM, P.O.Box 55, B’Kara. Registration No. V/O 0425
This project has been funded with support from the VO Fund managed by the Malta Council for the Voluntary Sector (MCVS). This project/publication reflects the views only of the author, and the MCVS cannot be held responsible for the content or any use which may be made of the information contained therein.
