Table 5 Theme 2: CRD caregivers’ experiences with the government and social services.

Lack of support for caregivers

Q1: We are invisible to the system. (…) Lack of support in institutions, no psychologist for the family, no place for siblings of sick children where they could feel relief from everyday life. (mother, 38)

Q2: The parent is left alone, no one cares what the child needs. (mother, 36)

Q3: No one cares that [the child] screams in pain, a certificate of disability, the pro-life act—it has no real impact on getting to specialists. A child may suffer for months. (mother, 36)

Lack of information

Q4: We don’t have basic knowledge of where to go or what documents are needed. Everything that to some extent (formally) helps us on our way, such as applying for a disability jurisprudence, early development support, the pro-life law, we learned accidentally thanks to the kindness of people we met along the way, and not thanks to, for example, any institution we went to where someone explained in a factual and patient way what we should do—that’s what we really missed. (mother, 36)

Q5: I learned a lot from parents of disabled children, where to go, what kind of re-imbursement, rehabilitation, etc. we might apply for. None of the doctors or employees from the MOPS [Municipal Centre for Family Assistance] or PSPR [District Family Assistance Centre] gave any directions or informed me what kind of help to seek and where I should go for help with everything. (mother, 41)

Q6: There is no information for the family about what help they can get. Conflicting information about rehabilitation equipment. Failure to inform parents of disabled children about support programmes. (mother, 27)

Lack of re-imbursement

(medication, rehabilitation, services)

Q7: Will there ever be a refund for specialist PKU food? It would be much easier for ill people, a great help because finances are getting worse these days and food is becoming more and more expensive. (mother, 33)

Q8: No refund, sometimes you have to wait 2 years for the National Health Fund and up to 3 months privately—how is this possible? (mother, 34)

Q9: Further genetic tests, covering subsequent stages, should be reimbursed, as the costs are high. (mother, 50)

Q10: Rehabilitation equipment is expensive. To get anything, you have to run about a great deal to MOPS [Municipal Centre for Family Assistance] or PFRoN [State Fund for the Rehabilitation of the Disabled]. There is little rehabilitation. We pay for everything with our own money. The equipment is usually expensive and caregivers cannot afford to buy it. PFRON is a place where people should help the sick, but sometimes they defend themselves with all their might. (mother, 50)

Disability jurisprudence system

Q11: An important problem is the way case law works in Poland, which is in a deplorable state… even though the child requires my constant care, I fought for 3.5 years to obtain point 7 [disability pension which indicates the need to provide constant care for a child] (mother, 33)

Q12: Evaluating physicians and court experts have no idea about rare diseases, and based on their statements and opinions, decisions are made that are harmful to sick children and their caregivers. (mother, 39)

Q13: Disability case law is a joke. The state does nothing to help the sick. Everything that is needed that might help the patient must be paid for from your own funds. (mother, 29)

Q14: The physician adjudicating on the disability commission does not read the medical documentation and considers Kabuki syndrome not to be a progressive disease. (mother, 41)

Lack of systemic care

Q15: Our state has no decent system that would really support us as parents in the hardships of everyday life. (…) National Health Fund medical care is scandalous, there is no systemic care for DMD patients. The system is not unsupportive as much as it is destructive. (mother, 39)

Q16: There is no complementary and comprehensive support system for families with children with rare disease in Poland. The family is completely neglected, there is no comprehensive guidance and support by a psychologist, psychiatrist and dietician through constant care of the person from the beginning of the disease throughout life. The families have serious emotional problems and have no specialist support in this area. (mother, 41)

Q17: The issue of psychological assistance for caregivers of sick/disabled people is ignored, as is the systemic issue of family support—in practice it does not exist. Medical help too—you often have to choose between your own health and that of your child, which in turn puts a double burden on us—because who will take care of your child when, for example, you have to go to the hospital. We give up on ourselves because we have no “rational” choice. (mother, 36)

Q18: After two years of living in Poland with a disabled child, we decided to find a place where our son has a chance for a better life. We have been living in Norway for 6 years. There is a gap between the approach of Polish and Norwegian doctors. What matters here is not only my son, but also my opinion as a mother. All necessary equipment is fully refunded! Conditions in the hospital are much better. Norway is a caring country that cares about people with disabilities. Poland is far behind. Here you are told to parent your children, and then the parent has to worry about it himself. It’s sad that this is the case. (mother, 35)

Needs

Access to medical treatment

Q19: Children with a rare disease have no real priority in their access to medical care, even with a disability certificate and the Pro-Life Act. (mother, 31)

Q20: The waiting time for a medicinal product sometimes exceeds the prescription expiry date. (mother, 36)

Q21: It should be possible to treat children with rare diseases abroad, paid for by the National Health Fund (…) re-imbursement of medicines but also special dietary products (…) food products consume a great deal of money, sometimes impairing the daily needs of healthy people and other family needs that have to be forsaken in favour of a sick child. (mother, 43)

Financial support

Q22: Why don’t we have free medicines, doctor’s appointments and rehabilitation. (mother, 49)

Q23: Reimbursement for home equipment for monitoring Phe levels and better access to and re-imbursement of specialised PKU food. (mother, 33)

Q24: A lot would be changed by refunds for low-protein food and greater financial assistance from the state, best regards. (mother, 44)

Q25: Psychological support for caregivers of disabled children is very poor, almost non-existent. I have been going privately for 5 years, visits cost PLN 150 and should be covered by the National Health Fund. Since AA therapy is covered by the National Health Fund, children’s parents should be covered even more

Respite care and personal assistants for those with disabilities

Q26: Respite care—a problem with money so that every parent can benefit. (mother, 38)

Q27: I would benefit from respite care in a difficult situation. (mother, 26)

Q28: ON assistant [personal assistant for those with disabilities] allows caregivers to help take care of a disabled child. There are no regulations regarding personal assistants for persons with disabilities. (mother, 45)

Residential care homes for disabled adults

Q29: I am afraid of what will happen to my son when he reaches adulthood and turns 18. There is no centre in Poland for adults with rare diseases. So what’s next? Because the child will not recover miraculously. (mother, 44)

Q30: I have serious concerns about my child’s quality of life after graduation. For profoundly disabled adults with rare diseases, there are very few options available when it comes to rehabilitation and socialisation. They are confined to their homes and have few opportunities for activities and care. (mother, 32)

Care allowance

Q31: Care allowance should be treated as support in raising a child with a disability certificate and not as the caregiver’s earnings. We should have the opportunity to work legally 3/4 or 1/2 time to earn extra money for the household budget and go out to meet people without the risk of losing benefits. (mother, 28)

Q32: All parents should receive care benefits. Some parents do not receive it because the case law does not award these points. I had to fight in court. This shouldn’t be the case in Poland (mother, 42)

Q33: A caregiver who receives care benefits should be able to work without losing the benefit. The ban on earning extra money deprives us of the right to a decent life. (mother, 36)

Q34: After 16 years of caring for a child, I started working. I am very satisfied with my work. It’s my therapy, my escape from everyday life. Work is a very important element in my life. (mother, 41)