People with Disabilities in Ireland
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Irish people with rheumatoid arthritis (RA) have a poor quality of life and find it difficult to access specialist services to treat their condition, a major new survey has found.
Preliminary results of the survey, conducted in rheumatology clinics around the country for the charity Arthritis Ireland, show that the quality of life for RA patients is significantly below the adult norm, with 50% of patients surveyed not in employment outside the home and 50% working part-time because of their condition.
RA is a chronic, debilitating disease that causes pain, swelling, stiffness, and loss of function of the joints - it affects approximately 35,000 people in Ireland and can start at any age.
The study found that just over 11% of those surveyed had not seen their consultant rheumatologist even once in the previous year and the same percentage had to wait more than a year for a referral appointment from their GP to a consultant. In addition, 57% of patients surveyed had no access to a nurse specialist or occupational therapist, while 68% and 79% respectively had no access to physiotherapy or hydrotherapy.
The survey also shows that 30% of patients have to spend two to four hours travelling to their hospital for an appointment with their rheumatologist. The survey, when complete, will cover 300 patients.
Consultant rheumatologist Dr Doug Veale highlighted the major gaps in care provision for those with RA. Ireland currently has one consultant per 350,000 people, whereas the appropriate level should be one per 80,000 population.
"We would need at least three times the number of consultants we have at the moment," says Dr Veale.
He said that rheumatologists had some time ago put a plan to the Department of Health for short, medium and long-term necessary improvements in services, but as yet there has been no specific policy decisions made about improving services.
Arthritis Ireland Chairman Professor Barry Bresnihan said the charity was launching a new strategy with the aim of developing a quality of service for arthritis sufferers at least equal to or better than the highest standards of international practice. "This is an initiative that is directed at improving the quality of life for patients with arthritis," he said.
Arthritis Ireland will be promoting the development of centres of excellence around the country and a major part of this drive will be the establishment of new academic chairs of rheumatology in hospitals and medical schools, which in the initial stages, will be funded by Arthritis Ireland.
Professor Bresnihan said these centres of excellence, led by new professors of rheumatology, would lead research into the causes and treatment of arthritis and other musculo-skeletal diseases. He stressed too that the centres would promote teaching in rheumatology and would aim to enhance clinical practice among medical and other health professionals.
Arthritis Ireland, formerly known as the Arthritis Foundation of Ireland, has renamed itself as part of a new corporate identity. Over the past decade, it has invested over e650,000 in supporting arthritis research projects.
The patient survey was presented in tandem with the charity's branch meeting and AGM in Dublin held on World Arthritis Day, October 12th.
It was an honour to have been invited to join the Irish delegation to the United Nations convention on the rights and fundamental freedoms of people with disabilities. While interesting it can also be frustrating seeing 190 countries express how good their own record is on equality and human rights for people with disabilities.
The first ad hoc meeting took place in 2003. A working group was set up comprised of state bodies and non-governmental organisations (NGOs) tasked to produce a working text, which was produced in January 2004. This was the first time in the history of the UN that NGOs were given the same speaking rights as, and equal treatment with, State bodies. A good working group text was produced.
The 3rd ad hoc meeting took place in June of this year with the first full reading of the working text. This allowed any country to propose alterations, modifications or amendments. If all proposals were included in the final convention we would have the largest, most detailed, document ever produced and an unrealistic expectation that every country could comply with the convention.
The 4th ad hoc meeting took place in August and negotiations got underway to bring each section to an acceptable agreement. By acceptable I mean that all 190 countries agree on the terminology and language used. Because there is no voting in UN conventions, signing a convention is up to each individual country and it is important to get as many countries to sign a convention so that real changes can take place for people with disabilities throughout the world.
I would like to acknowledge the positive approach taken by the Irish delegation in relation to input from all the NGOs present. Now that the inter-country negotiations have started the NGOs have less opportunity to participate but we are making our voices heard through morning, lunch time and what are called `side bar' meetings and also in one-to-one consultations.
It is vital that people with disabilities, through delegations and NGO participation, continue to be actively involved in this process. If not it would be as if the Convention to Eliminate All Forms of Discrimination Against Women were written solely by men.
I would like to thank the Minister for Justice for inviting me to be part of the delegation. I also want to thank for their support: John Biggar of the Department of Foreign Affairs, Head of delegation to June 2004, his colleague Eamonn MacAodha, current Head of delegation and Alan Gibbons (1st Secretary UN mission) and Jim McCaffrey and Sandra Smith of the Department of Justice, Equality and Law Reform.
This convention is going to take time but I am confident it will lead to a piece of international legislation that will bring about equality for people with disabilities.
Nigel Brander
Chairman
. Access to dental surgeries is rather difficult, some surgeries are upstairs in old houses and have no lifts.
. People with disabilities need dental surgeries to be accessible with: ramps / lifts / grab-rails / spare wheelchair / accessible toilets: one for women and one for men.
. Dentists, dental nurses and receptionists need to update their communication skills by means of sign-language, lip-reading and visual aids about the process in hand.
. The need for dentists to have a reassuring tone of voice, especially for nervous and first-time patients.
Service development initiatives identified include:
. Disability awareness training to become part of the standard training of dentists and dental nurses.
. Regional training in sign-language, lip-reading, knowledge of the loop system for all dental personnel.
. A start-up grant for dentists setting up practice for the first time. This would be especially useful in rural Ireland.
The need for education and training was identified, awareness training on healthy eating, hygiene, knowledge of medicines and their impact on healthy teeth and gums.
It was also felt that toothbrushes, dental floss and tongue-cleaners should be more user friendly. It was suggested that a directory of disability aware dentists and dental nurses in each health board region would be useful.
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