What needs to change in Poland's children's hospitals to make little patients and their parents feel comfortable? Are multi-million dollar collections for children's treatment distorting the system?
Paulina Gumowska, Health Market: The K.I.D.S. Foundation, in its "Great Children's Hospital Survey", is checking what young patients and parents in children's hospitals need most. Without checking, however, it is clear that today for many families the biggest problem is alienation due to the pandemic, children simply need their parents at the hospital bedsides.
Igor Grzesiak, Vice President of the Management Board of the Institute for Patients' Rights and Health Education, works with the K.I.D.S Foundation: Of course, this is certainly the most important thing. A professional team is one thing, but good care, psychological support and the presence of the parent play an equally important role in the patient's recovery. Situations of difficult contact between parent and child do happen, but they are rather sporadic. It all really depends on the people running the facility.
Do you expect surprising findings from the research or rather a confirmation of known hospital ills?
We do not intend to confirm a preconceived thesis. The Foundation is looking for the most personalised direction. It wants to act where it is most needed. Of course, we have certain assumptions and questions that need to be answered: how to improve the patient pathway, how to increase the sense of comfort and safety in the paediatric ward and how to influence the comfort of healthcare professionals. The system does not always work as we would like it to, hence the survey and for parents of patients and for hospital staff.
You say that the system is not working as it should. That's clear, but what is there to improve it, to rebuild it?
First of all, the patient does not need to know how the system works. He or she should not be burdened with systemic dependencies - who is the payer, who is the beneficiary, who is the provider, what is the basket of guaranteed services, etc. The patient should know what his or her rights are and be involved in the treatment process. It is the responsibility of the medical facility, as well as the system, to organise this care in such a way that the patient feels comfortable and safe. Unfortunately, the patient very often gets lost in the system. He or she goes from specialist to specialist, from outpatient clinic to outpatient clinic, from hospital to hospital. And even when he or she does find the right facility, it is not at all obvious that they will be guided there in the right way. This can be illustrated by the use of electronic devices - to use a computer or smartphone, a person does not need to know the design of the software and how it works, they want to use these tools in an easy, intuitive and safe way. And so it should be with the health care system.
Which solutions are worth following?
A navigation system modelled on a system of coloured lines to guide the patient has been developed at the Children's Health Centre. The system provides simple, very indicative graphical clues as to which path is being followed. In many cases, we need just such simple measures, which do not require at all a reorganisation of the entire facility, huge expenditure, but an open mind and goodwill.
Paperwork?
Paperwork is an affliction of the whole system, which is increasingly dehumanised. Doctors have less and less time for the patient and have to spend more and more time on procedures, orders, regulations. Paper chases paper. We completely understand doctors - these are not their ideas, but this is not the way it can be. We cannot forget in all this bureaucratisation that the most important link in the system is the patient and the holistic and individual approach to each person using the system.
It is difficult to have a personalised approach when there is a shortage of people in the health service both to treat and to serve patients. This problem will not be solved by any pathway. Because procedures are one thing, but if there are no extra people in the emergency room, every visit will look exactly the same: nerves, anger and, in the end, bitterness.
Human beings have their own resilience. For example, communication training is needed; such training is provided and planned by the Patient Ombudsman in many facilities. Not only so-called white staff, but also administrative staff are covered. If, however, there is one registrar on duty, who for 12 hours serves a queue of dozens of nervous people, who sometimes wait several hours for their turn, in the meantime takes calls, conducts information, it is difficult to change attitudes. And it is indeed a complex problem.
The patient is already in the system, has registered, has been assigned a doctor. The problem of diagnostic availability begins.
If the disease is already identified after the entire diagnostic pathway has been followed, the patient may unfortunately find out that, for example, a life-saving or life-prolonging drug technology exists but is not reimbursed. Of course, there are various ways of obtaining such treatment, but in many cases there is nothing left to do but keep the child alive for a while longer. This is a particular problem for patients with rare diseases.
And then there are the multi-million pound collections, through which many of us learned for the first time what SMA is, among other things. Would you subscribe to the statement that such collections distort the system?
This is a river topic. The OPP system was not set up for this to happen now. But let us remember that every collection is about someone's health, life and human drama. This is a way of patching up Poland's ailing healthcare system. It is the state's duty to meet the needs of patients, it is the state's duty to ensure access to these services, it is not the citizens' duty to hold collections. Unfortunately, it seems to me that we will not change this in any way, because the needs will always be greater than the possibilities, and such direct support in the fight for life and health is in many cases the only salvation.
What is the doctors' perspective on what is on their list of priorities for change?
What is certain is that there is too much workload, which is due to the fact that there are simply not enough doctors; the average age of doctors is getting higher and higher, and the same is true of nurses. Let's also look at other medical professions, such as paramedics, who are a group that is still very much underestimated but plays a huge role in our system. It is with this in mind that the K.I.D.S. Foundation's 'Great Survey of Children's Hospitals' was set up to examine these needs and priorities and then propose a path for change.
Are patients a nuisance to doctors?
There is no doubt that the increasing awareness of patients' rights is having an impact on doctors' work. Some of them may feel less comfortable, but overall this is a good direction. We look at the doctor-patient relationship differently, which is now becoming a partnership relationship. This fosters trust and cooperation, which is very important from the point of view of the therapy provided. This can be seen especially when we are dealing with the parents of the patient, who have a great deal of knowledge and access to various sources of knowledge, and consult diagnoses not with one, but with several specialists. This affects the work of doctors and this cooperation must be learned. The research that the Foundation is conducting is intended to help determine the direction of change that patients, their carers and doctors would like to see.
Three things that have changed for the better in recent years?
Overall, I have to say that 'educating' the patient, increasing their awareness is a huge positive change. We have a Patient Ombudsman who supports us, who we are proud of. The change in the model of cooperation I already mentioned is also a big plus. And the third thing? This is a difficult question.
Perhaps not as many as three positive changes?
They are - a lot is happening, but very slowly. There is more accessibility to services, not at the level that patients are asking for, but we can see that the direction is good. Oncology, rare diseases, diabetes are areas that are now a priority. We are waiting for increased revenues to the budget at 7 per cent of GDP, let's wait, I hope this will really change our perception.
Source: rynekzdrowia.pl