Clarity needed on HSE Treatment Abroad policy
THE number of people who received funding from the Health Service Executive (HSE) to pay for treatment abroad has doubled in recent years.
The Treatment Abroad Scheme is available to people who could benefit from a procedure which is not available here.
However, it has become increasingly controversial because of the rejections suffered by people who are desperate to get access to expensive treatment overseas.
New figures show that 388 were approved in 2011 but this rose to 791 last year, with funding increasing from €2.2m to €7.4m.
It comes against a background of a huge rise in the number of applicants for the scheme, up from 481 in 2011 to 858 in 2012.
So while the numbers getting the green light went up, there were 22 turned down in 2010, rising to 93 in 2011 and 67 in 2012.
So far this year there have been 126 applications, of which 116 were approved and eight were turned down.
The figures come as the Rare Disease Taskforce in Ireland, a coalition of rare disease organisations from the Republic of Ireland, Northern Ireland and the United Kingdom, has called on the HSE to clarify its position on the Treatment Abroad Scheme.
It highlighted the case of Jamie O'Brien (22) a student from Louth who suffers from the incredibly rare disease, Ehler-Danlos Syndrome Type Three. It means his joints dislocate several times a day.
He was initially approved for treatment in Stanmor, a leading neuromusculoskeletal hospital in the UK. But three days before his treatment was due to begin, his application for funding was rejected.
The scheme also ran into controversy when Grainne O'Connor (27), who has life-threatening epilepsy and needed treatment abroad, was told she did not meet the criteria.
But after her case was highlighted, the HSE decided to fund the overseas treatment.
Philip Watt, chairman of Rare Disease Taskforce and Medical Research Charities Group, said: "It is not rare to have a rare disease."
He continued: "In Ireland, an estimated one-in-12 people in Ireland will have a rare disease at some stage in their life and many with a rare disease are children.
"It is heartbreaking to see the difficulty that so many people with rare diseases have with even being diagnosed in the first place.
"Then to see that individuals cannot get the treatment they so dearly need is unacceptable. People with a rare disease need access to expertise and treatment regardless of which European country it happens to reside in.
"There are patients in Ireland today who know that their condition can be diagnosed or treated elsewhere. The HSE needs to clarify the funding position of the Treatment Abroad Scheme as a matter of urgency."
According to the HSE, an application form must be completed by both the patient in question and that patient's referring consultant.
The application then must be submitted to the HSE for assessment and a decision must be given by the HSE prior to the patient travelling abroad or blood samples being sent abroad.
The HSE will not be responsible for any costs associated with a treatment or consultation abroad where prior approval was not given.
Following clinical assessment, medical evidence must be provided by the referring hospital consultant, giving details of the patient's medical condition, the type of treatment that is envisaged and the proposed provider of the treatment abroad.
The doctor must prove it is medically necessary, proven and will meet the patient's needs.
It must not be available in Ireland or available within the time normally necessary for the patient's health and the stage of disease.
Health & Living