Why Advocacy Matters
Living with a rare condition like PID means that patients often have to advocate strongly for themselves within healthcare systems that may have limited awareness of the condition. IPIA works at a national level to ensure PID patients’ voices are heard by policymakers, healthcare commissioners, and the HSE.
Your Rights as a Patient in Ireland
As a patient in Ireland, you have rights that include:
- The right to be treated with dignity and respect.
- The right to information about your condition and treatment options.
- The right to give informed consent to treatment.
- The right to a second opinion.
- The right to access your medical records (under GDPR).
- The right to complain if you are unhappy with your care.
Citizens Information – Healthcare in Ireland
Making a Complaint
If you are unhappy with your care you can:
- Contact the Patient Advocacy Service which is a free, independent and confidential service that can support you to make a complaint about care received in a public acute hospital. Entirely independent of the HSE
- Phone: 0818 293003
- patientadvocacyservice.ie
- Use the HSE Your Service Your Say complaints process detailed here.
- Contact the Ombudsman if your complaint is not resolved satisfactorily
- For private care, contact HIQA
For more information see: Citizens Information – Making a Complaint
Accessing Specialist Care
In Ireland, patients with suspected or confirmed PID are referred to immunologists or clinical immunology departments. Key centres include St. James’s Hospital (adults), Childrens Health Ireland at Crumlin and Beaumont Hospital.
If you are having difficulty accessing specialist care, speak to your GP about an urgent referral.
Medication Access
Access to immunoglobulin replacement therapy and other PID treatments through the Irish public health system can involve navigating:
- The GMS (Medical Card) scheme – covering medicines for medical card holders.
- The Drug Payment Scheme – capping monthly medicine costs for those without a medical card.
Your Rights at Work
Adults with PID may face particular challenges in the workplace due to frequent illness, hospital appointments, or the need for treatment during working hours.
Depending on the nature and severity of your condition, PID may be considered a disability under the Employment Equality Acts. If so, employers are legally required to provide reasonable accommodation to allow you to do your job, unless doing so would cause disproportionate difficulty.
Disability & Financial Supports
Depending on your circumstances, you may be entitled to social welfare supports, disability allowances, or other financial assistance. IPIA can help point you in the right direction.
International Advocacy
IPIA is a member of IPOPI, which advocates on behalf of PID patients at an international level — working with the World Health Organisation, the European Parliament, and national governments worldwide to improve PID diagnosis, access to treatment, and standards of care.
