What support can a carer benefit from?
The right to information, guaranteed home care or cash benefits - knowing what your rights are as a carer is the first step to making effective use of the support available. In response to this need, the Carer's Bill of Rights1 - a unique document - was created as a practical tool to support carers in their daily responsibilities.
- Although it seems that access to knowledge is not a problem nowadays, it is paradoxically difficult to select what is relevant in the plethora of information. Carers may also simply not have the time or strength to dig through the statutory documents and regulations on particular procedures - says the author of the Charter of the Rights of the Guardian, Professor Dorota Karkowska. - I am convinced that such a document, bringing together some of the very relevant information for many carers, will be a practical tool to make a real improvement in their situation and to make their daily duties easier.
Based on a survey conducted in 2018 as part of the 'Medical Nutrition - Your Meals in the Fight Against Illness' campaign, areas were mapped out where carers particularly need support. Feelings of helplessness, frustration, physical and mental exhaustion and lack of time for oneself are the main difficulties faced by carers of sick people. Faced with the patient's situation, the carer's needs are often relegated to the background. Psychologists call them hidden patients for a reason. The situation of people caring for their sick relatives in Poland and the efforts to improve it became the motivation for the creation of a document to help carers exercise their rights and relieve the burden of their daily duties.
Who is the carer?
Although the question of who a guardian is seems trivial on the surface, under the law a precise definition and distinction between types of guardians is crucial. The Charter of Rights of the Guardian first and foremost organises the knowledge of what statuses of guardianship exist in Poland. This is because their rights, such as the right to information, depend on it.
Without being aware of what information you have access to as a carer, you can struggle to get it. Katarzyna Krzymuska, who has been caring for her dad in an apalemic, or vegetative, state for five years, found this out. - While caring for my dad, I was repeatedly confronted with insufficient knowledge on the part of officials from various institutions or medical staff. For example, I have been asked in outpatient clinics or other facilities what it means that Dad is in an apalgesic state and why I am the one who wants to obtain information on his behalf. If I had not been confident that I had every right to, for example, retrieve my dad's records or the results of treatments, I might have capitulated to the authority of the medical staff and it would probably have taken me much longer to get the necessary information - comments Katarzyna Krzymuska.
When care is provided at home
One of the biggest challenges for the carer is returning and looking after the patient at home. However, it is worth knowing that there are many services associated with this type of care that support not only the patient, but also the carer. First and foremost among these is support in terms of education, preparation for specific tasks and psychological care. After all, the new role is a very serious psychological burden that involves completely new responsibilities. It is therefore good to be aware that the possibility of acquiring relevant knowledge is within the scope of guaranteed benefits, financed by the National Health Fund. The carer has the right to demand adequate training in the use of medical equipment. He or she, not only the patient, is also entitled to psychological support.
This is the case for the reimbursable home enteral feeding procedure. This benefit applies to patients who, due to the impossibility of supplying nutrients in sufficient quantities to keep them alive by the natural route, require long-term administration of nutrients (industrial diets) by means other than the oral route. The service includes not only the provision of diets and medical equipment, but also the preparation of the carer for the use of such nutrition. Continuous telephone contact with medical staff for advice may also be provided.
Financial support
Financial support was among the needs mentioned by carers in last year's survey, with extra money in the budget cited in third place as an element that would make day-to-day care easier1.
Hence, the document could not miss the point about the guardian's rights to cash benefits in relation to the patient's care. The legal guardian can draw a pension for the patient. He or she is also entitled to carer's allowance.
The next step on the road to change for the better
The Carer's Bill of Rights was created as part of the fourth edition of Nutricia Medical's campaign 'Medical nutrition - Your meals in the fight against illness', which aims to build awareness of medical nutrition as an integral part of healthcare. An important area of the campaign's activity is action to support carers of the chronically ill.
- When the organisers of the Medical Nutrition - Your Meals in the Fight Against Illness campaign and I joined together last year to engage with carers, we knew this would not be a one-off campaign. This is a long-term project that will definitely grow, and the creation of the Carers' Bill of Rights is another step on the road to change for the benefit of patients and their carers - says Igor Grzesiak of the Institute for Patients' Rights and Health Education, co-inventor of the project.