Proposition 54K2131

Proposition de résolution relative à l'épilepsie.

General information ¶

Authors

CD&V Nathalie Muylle, Els Van Hoof
N-VA Renate Hufkens, Yoleen Van Camp, Valerie Van Peel, Jan Vercammen

Submission date

Oct. 27, 2016

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

public awareness campaign health policy resolution of parliament disease of the nervous system

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP ∉ Open Vld N-VA LDD MR PVDA | PTB PP VB

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Discussion ¶

March 23, 2017 | Plenary session (Chamber of representatives)

Full source

Daniel Senesael, rapporteur, refers to the written report.

Sixteen thousand people in this country have epilepsy. No one wants to have this disease. I think that as a society we have a duty to deal with this as best as possible. The figures indicate that this is not the case today. Approximately 300 million euros are spent annually on the costs of people with epilepsy. Importantly, the majority of those costs, 75 % to 80 %, is due to work injury, and therefore does not go to quality care at all.

With this resolution, the committee unanimously supports the proposal to improve it. We started in the spring of 2016 with a roundtable, for which we brought together patients, patient associations and experts in Parliament. They could put their grievances on the table and make us, policymakers, diet what can be better in the care of epilepsy.

The grievances were very clear. On number 1 stands, which will not surprise you, breaking the huge stigma that still rests on epilepsy today. This means that even today people still do not get the treatment they are entitled to, because their condition is not known and because they do not find the way to the possible treatments and especially to the specialized centers, which are indeed there in this country.

I asked for the numbers. Apparently, up to one in ten people find their way to those specialized centers, and one in four people with epilepsy does not respond well to medication. Especially those who need to go to those specialized centers. After all, they are not treated adequately, or the medication works inadequately with them. It is really appropriate that they explore other treatment options in the specialized centers, such as surgery, nerve stimulation or a diet.

We see today that there is concern, but that the distribution is insufficient.

A second point that was raised, especially by the patients and their caregivers, was that people who find the way to the specialized centers are very satisfied with the care there, but that the support can still be more human. If one does not have the condition, it is difficult to imagine what this means on a daily basis. To say just one thing: driving or taking the bike are things that are no longer obvious. That’s why we also call for work to be done for more human care and better psychosocial support for people with epilepsy.

I have already said that in the committee we could count on the support of the committee-wide proposal. This gives me great pleasure. I would also like to expressly thank my colleagues from the opposition for their support and, above all, their contribution to the proposal. This, of course, also applies to the majority coalition partners, who have contributed to further refining the proposal and who have, for example, jointly submitted a proposal to invest even more in the distribution to work and the awareness of employers, so that we can also increase the opportunities on the labour market.

I decide as I started. No one asks to get epilepsy. No one wants to be born with it. No one wants to have this disease. As policymakers, we have the damn duty to establish a society that deals with it as well as ensures that people are treated appropriately at an early stage. Therefore, we ask for better recording which treatments are given today and whether they are adequate. The few numbers we have are a clear indication that this is not the case. That can be better.

Only when we have a quick delivery to the right care, whether medication or specialized centers, can we act early. If the condition is under control, and that chance is there today, and if we can ⁇ it early, then we ensure that the opportunities both in education and of course later on the labour market, but also simply in the social life, increase enormously. That makes a big difference for the quality of life and of course also for the social costs that we do not spend properly today.

I would like to thank again my colleagues from the opposition and the majority for their support for this draft resolution. I look forward to the vote.

Mr. Speaker, colleagues, as Ms. Van Camp said, epilepsy is a condition that affects sixty thousand people in our country. It is a non-underestimatable condition that has an enormous impact on the patient’s life, both in terms of his health and in social and economic terms.

I would therefore like to congratulate the initiator of the N-VA and the initiator of the MR for their respective resolutions. Both have triggered us to examine what measures are needed to move forward.

This resolution was the subject of an interesting interaction between majority and opposition in the Public Health Committee. I believe that this parliamentary commitment from all parties has led to a solid text intended to address a number of problems.

From our group, we believe that it is important that we have a good view of the problem. The registration, as proposed in the resolution, is absolutely desirable. However, not everything can be included in a generic registration. Because the registration of indirect costs is difficult, we have proposed that the health-economic and social impact of epilepsy should also be mapped through a sample-based study, together with the data from the register. The insights we gain in this way can then serve as the basis for policy initiatives.

We also ask for quality indicators for diagnosis, treatment and quality of life of patients. This way we can track to what extent the policy achieves its purpose and again where it may need to be updated.

A clear problem outlined in the resolution is the insufficient knowledge among patients and healthcare providers of the treatment options. That is what we really want to invest in. We see today that people are not referred to reference centers quickly enough. Proper information provision to patients, doctors and healthcare providers can improve this.

Finally, we believe that we should look at the causes of the waiting lists we know at our reference centers. We are not alone in this regard. They also exist in the surrounding countries. However, it is necessary to investigate why those waiting lists are there.

We are also pleased with the amendment of CD&V which has made us aware that we should sufficiently emphasize the role of the first line, which of course always must be short-circuited with the specialist and the reference center. After all, we believe that this first line plays a crucial role in guiding the patient, especially in terms of therapeutic loyalty.

In that sense, we also find Mr Jiroflée’s amendment interesting. When we need to make progress, looking at how we can improve that guidance is essential. Involving a reference nurse is not necessarily the solution. This monitoring should be done close to the patient. I think then the first line will come back into the picture.

Thank you Mr. President, dear colleagues. In my turn, I wanted to thank the authors of the resolutions that were proposed to us to reflect together on how to better consider people who suffer from epilepsy, knowing that it is a disease that can take different forms, with crises of varying scale, sometimes crises that scare the person himself, his family and his surroundings.

Along with this concern regarding the provision of the most suitable health care for these people, there was also the concern, shared by Ecolo and Groen, of better information of the population, of better support from citizens, employers, colleagues, to enable these people to continue to live and participate in the social and professional life.

The other element, which is also important for us in these texts, concerns the desire to ensure an improvement in the registration in Belgium of data relating to persons who suffer, the type of treatment, the effectiveness of the treatments.

It should also be taken into account the situation of the necessary reference centres for persons suffering from refractory epilepsy and for whom multidisciplinary and ⁇ targeted or specialized interventions are needed. On this point, it appeared that it was necessary to evaluate as closely as possible how these centers meet the needs and, on the other hand, how the financing or recognition of these centers is adapted to the needs of the centers themselves. Are these centers sufficient? Are the financial resources they receive adequate? Is their geographical distribution the best compared to the areas to be covered?

The representative of the minister also drew our attention to the fact that Wallonia may be lacking centers. There is only one! In any case, it is necessary to evaluate the situation in order to be able to make arrangements.

These are all the reasons why we supported the text proposed in the Health Committee by also drawing attention to the concern for family members, whether it is parents, brothers, sisters, children but also close carers who, of course, have an important role to play alongside people with epilepsy. All these speakers sometimes find it difficult to ensure this presence with the sick.

We not only support, but also thank members for the work done in the Health Commission.