Below is our submission to the HSE on behalf of CLDI for the Public Consultation on Medical Card Eligibility.
We have concentrated on the change in the system that we believe would make a better overall system for the all children with liver disease. It covers the issues that have been raised by members over the last 3 years.
Children’s Liver Disease Ireland (“CLDI”) comprises families who have a child with a serious liver disease. I am chairperson of CLDI and can be contacted on 086 8921353 or email@example.com.
Childhood liver disease is both a genetically inherited disease and a disease that randomly occurs in children. Childhood liver disease is rare, but can vary from an illness requiring daily medicines or dietary limitations with regular check ups to children requiring and receiving liver transplants. It is a disease which is very difficult to create a definitive line between children whose illness is severe enough to require a medical card and those whose illnesses do not significantly impact on their lives, financial or otherwise. Due to how the disease may evolve two children with the same disease can have very different medical requirements and experiences. There are approximately 120 children living in Ireland with serious liver disease, approximately 50 of these have received a liver transplant.
For this reason, the current system of awarding a medical card for a temporary time period, which covers some of the costs of medical treatment, is not in line with the medical treatment for children with liver disease. In addition the absolute system of award or denial of a medical card creates for families, the medical profession and the medical card system a large and stressful bureaucratic problem, of border line and unusual cases. There are many of these in the liver disease category. We believe that too much support and access in the health service is dependant on one decision of whether or not to award a patient a medical card.
Childhood liver disease frequently has a huge impact on the finances and home life of a family. A medical card covers some of the costs incurred,
But many costs are not covered, including,
child as an out patient or in-patient,
during in-patient stays,
We believe that State/HSE support for a child with liver disease should reflect the medical treatment prescribed by the team of paediatric consultant doctors who treat these children. We propose that the discretionary medical card system is altered to become patient focused, supporting patients who follow the medical treatment prescribed. We address each area affecting a child with liver disease below. We argue that each area should be addressed separately rather than continuing with the medical card system that covers all areas.
We believe that this would create a more patient friendly and less bureaucratic system and would be less costly for the HSE than the current system for those with and with out discretionary medical cards awarded on medical grounds.
The system governing medicines taken by children with liver disease is very complex. Children are prescribed medicines on the High Tech Scheme, on the Drug Payment Scheme listing and not included on the Drug Payment Scheme. The awarding of a medical card reduces the cost of the medicines in the first two categories from €1,728 per year under the Drug Payment Scheme to €30 per medicine per year prescription charge. By definition medicines are prescribed to treat disease and therefore the success of the treatment is dependant on the patient taking the full course of medicine, thus reducing hospital appointments and in patient care.
These medicines are vital to the treatment of liver disease. Not taking these medicines can have serious complications and can, in certain cases, lead to liver failure. It is financially and medically beneficial to the HSE and the patient that these medicines are fully paid for by the State/HSE and therefore we argue that these medicines should be fully paid for by the HSE for all patients prescribed them.
In addition, there are a number of consultant prescribed medicines, which are not covered by the Drug Payment Scheme or a Medical Card. These include Vitamin E, Aquadek and Vedrop, considered food supplements. These are expensive medicines that are not commonly used in the healthy population. We believe that these medicines should be covered under any amended medical card/support scheme for any patient who has been prescribed them by a hospital consultant.
Some children with liver disease require vaccines not included in the HSE’s childhood vaccine programme. A hospital consultant prescribes these vaccines. The administration of these vaccines can save future medical expenses yet, without a medical card, it is almost impossible for families to get the HSE to cover the cost of these vaccines.
We suggest that it would be better for patients and for the HSE’s finances that vaccines ordered by hospital consultants would be covered for all patients. We believe this would be a fairer use of this resource than the requirement that the patient holds a medical card, based on financial or medical grounds.
Medical Equipment – oral syringes and feeding tube equipment
Access to this equipment is dependant on holding a medical card. It makes more sense that this equipment is provided to those patients who require it irrespective of their medical card status. For example, feeding tubes are not used without hospital consultant led medical prescription. Families should automatically receive this equipment from the HSE for home feeding tube administration, rather than linking it to the holding or not of a medical card. It is currently very difficult to obtain this equipment without a medical card, yet the previous criteria for obtaining a medical card did not necessarily consider need for such equipment important.
Other medical equipment have similar trigger points which could be used as a requirement for supply by local HSE offices to patient for use in their medical treatment. Allowing patients to access equipment for medical treatment at home is both better for the patient and cheaper for the health service.
GP visits, Hospital A&E, Out Patient and In Patient Care
As these services are charged on a per use basis it is important to ensure that those who have most use of these services are provided with the financial support offered by the current Medical Card. Suggested methods of accessing this financial support recently discussed in the media include a list of illnesses or a review of each case by an expert panel. Whatever method is adopted, we believe that account should be taken of past or medically predicted future GP and out patient appointments, distances travelled, in patient care, loss of income, and time frame of illness. Our members have been very frustrated in the recent past by the medical card operator’s refusal to disclose what, if any, financial cost has been applied to their discretionary medical card application. The system set up should be fair and transparent. Those who apply for a discretionary medical card should be able to understand the criteria applied and how they apply to their individual circumstances.
The financial support provided by a medical card in this area should be provided when a patient is using the service. It is not necessary for a medical card to be awarded for life for a serious illness from which a patient will recover in time. But equally it is stressful for a patient, or their parents, to have to continually apply for a medical card when the patient is suffering from a life long serious illness. Hospitals and GP practices keep records of attendances; these could be used as part of a system to monitor a patient’s use of these particular services.
Should you have any queries on this submission on behalf of CLDI please contact me on the above contract details.
Chairperson – Children’s Liver Disease Ireland.