It’s hard to know what’s available to you…
It can be a difficult thing for patients and carers to navigate between all the health services available to them – and even more difficult for a health professional to recommend what is best for them to use. We felt it was important to provide a “one-stop shop” for patients, carers and health professionals where they can look at all of the different services available across Ireland. Some of the service providers below are for specific ages, specific diseases, specific professions and even specific needs, but one thing is for sure that they all have in common –
THEY ALL PROVIDE EXCELLENT SERVICES
The Irish Patients’ Association’s Mission is to keep the patient at the centre of the healthcare system. It does this by advocating for the needs of patients to be paramount while working in partnership with health providers. Through contact with patients, their families, and their carers, the Irish Patients Association (IPA) keeps abreast of on-going and emerging patient needs. The Association addresses various committees, working groups, and public bodies on behalf of patients.”
The Irish Pharmacy Union (IPU) is the representative and professional body for community pharmacists. Our mission is to promote the professional and economic interests of our members. Members of the IPU are committed to delivering a quality, accessible, personal and professional service that puts the patient first and has as its primary goal the optimisation of the health and well-being of society.” In 1973 the Irish Pharmacy Union, formed the Irish Pharmaceutical Union, was established (having emerged from the Irish Drug Association). It was evident to the pharmacists of the time that there was a need for an organisation distinct from the regulatory body that would solely represent their interests.”
Formed in 1995 by parents of children with dyspraxia, the Association aims to: 1. Raise awareness of dyspraxia in Ireland and create a better understanding of the difficulties children and parents face. 2. Ensure adequate resources are available to support the needs of children with dyspraxia. This includes occupational therapy, speech therapy, physiotherapy, psychological support and education. 3. Provide an information and sharing and support network for parents. 4. Improve diagnostic services. 5. Organise meetings for parents and their children. 6. Provide a parent/professional link.
iCAN are a volunteer charity working to improve the lives of those effected by Juvenile Idiopathic Arthritis and associated Rheumatological conditions in children. We do this in a a variety of ways from supporting parents to fundraising and advocating for better care for children with JIA. iCAN has a very active support network of parents – indeed iCAN was started by parents looking to support each other through the ups and downs of JIA. They interact on Facebook, telephone and on iCAN Family days. The support and information from other parents can be invaluable and it is great to know you other parents are never alone.
Phone: 086 8289817
Heart Children Ireland is a support group for parents and families of children with a Congenital Heart Disorder. CHD is the most common of all birth defects affecting one in every one hundred children born at present. About half of all babies born with CHD will require heart operations.” They are a nationwide organisation with over 1,000 member families. They are a completely voluntary group and receive no government funding. They depend on all their own fundraising and donations from individuals and business. More information can be found on their website.
“Originally set up in 2009 as the parents group of Mayo Early Intervention Services, ÁIRC is now due to demand, extending to cover families of children with disabilities up to the age of 18 or leaving 2nd level education, whichever comes last. Our aims are to provide resources (both financial and human), communication (in the form of education and communication between parents or parents and the service) and to advocate.” Áirc are always looking for new committee members. If anyone has any ideas for fundraising they are currently raising money for their centre.
The Carers Association is Ireland’s national voluntary organisation for and of family carers in the home. Family carers provide high levels of care to a range of people including frail older people, people with severe disabilities, the terminally ill and children with special needs. The Association was established in 1987 to lobby and advocate on behalf of carers. While the government has begun to initiate some services for carers, we believe that the vast majority of Ireland’s family carers still remain without vital services. These services, such as in-home respite, are essential to family carers.They implement government policy to care for people in their own homes for as long as possible.”
Irish EDS and HMS aims to advocate for and to empower people affected by Ehlers Danlos or Hypermobility Syndromes in Ireland. They envisage a world where people in Ireland with Ehlers Danlos or Hypermobility Syndromes receive excellent supports and services in line with international standards.They aim to 1. provide high quality information to people with Ehlers Danlos or Hypermobility Syndromes and those supporting people with those conditions 2. raise awareness of Ehlers Danlos or Hypermobility Syndromes amongst the general public and especially amongst the medical community 3. provide support for people with Ehlers Danlos or Hypermobility Syndromes so that they can manage their condition better and maintain positive mental health 4. advocate for excellence in patient centred care. Enquiries: firstname.lastname@example.org
Irish Dysautonomia are dedicated to raising awareness, support, fundraising and forming a social network around POTS (postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome) and all related syndromes of Dysautonomia within, but not restricted to Ireland. We are dedicated to supplying information and support to individuals who have been newly diagnosed with this disorder.
ACT for Meningitis is a charity which aims to raise awareness and educate society about the signs and symptoms of meningitis while offering free support services in Ireland to those affected by the disease.Our support service is tailored to the needs of the individual /family to find the most appropriate and beneficial service for them.Each individual situation differs depending on when they had Meningitis and the outcome at that time as Meningitis has a wide range of severe side affects coupled with the trauma of the experience.Our trained family support officer assesses where the charity will be most beneficial in providing support. Our services include creative therapies-including play and art therapy which helps children deal with the impact of the disease , free counselling services for families or individuals who have been affected by Meningitis , Cranial Sacral Therapy ,physiotherapy home visits,one to one support and family support days aimed at bringing families together to share their experiences of Meningitis which eases the isolation. Phone: 091 380058
Arthritis Ireland provide people with arthritis with self-management tools and supports to ease the physical pain and social isolation caused by arthritis. They use ongoing research to increase understanding of the causes of the disease as they work towards finding a cure. They provide support to people living with all rheumatic and musculoskeletal diseases (MSDs) and related conditions which affect peoples’ability to live well. They fund pioneering research to increase the knowledge base and use that knowledge to transform the lives of people living with the disease. They support the education of healthcare professionals and provide information to people living with arthritis, their families and carers. Phone: 1890 252 846