Urological problems

1. Urologicalproblems of MultidisciplinarySpinaBifidaClient Kuido Väljaots, Ann Paal Tallinn 2013

2. MMC & HCage

3. MMC – UrinaryBladder&Treatment

4. Our urodynamical monitoring Routine • 3-6 m of age - 1st Urodynamics (Filling Cystometry) • Ifneeded – beginningof CIC and/oranticholinergictreatment • up to 3y – UD every 6 month • forward – UD once a year

5. There are many problems... • Administrative problems • Estonia issmall and so isthe number ofpatients • Access to medicines and pharmaceutical forms is modest compared to the rest of Europe • The absolute number of medicines used to treat neurogenic bladder is small • The number of medicines subsidised by the Health Insurance Fund at an adequate rate is also small.

6. We are in urgent need in • anticholinergic preparations to administer directly into the bladder • oral administered anticholinergic preparations of prolonged action • Useofα-1A adrenoceptors’ antagonists (tamsulosin) (torelaxsoothmusclesofbladderneckinsomeourcases) isrestricted – onlyforadult (prostatic) patients • Considerable progress has been made in obtaining and subsidising catheters • Obtaining catheters for children under the age of threestill remains a serious problem

7. Some SpB children are forced to grow up outside their families. • Various social welfare institutions become their homes. • These institutions are plagued by a constant shortage of staff and funds, not to mention adequate CIC and trained employees. • The working conditions and wages offered by these institutions unfortunately fail to motivate anyone to do any extra work. • Catheters are also too expensive for this group, because the funds allocated for treatment are not sufficient to purchase them. They are also difficult to obtain, which is another problem. • It is easier to be in nappies! • These problems need to solve at the political level, but we have failed to change things for the better for many years now.

8. CleanIntermittent Catheterisation(CIC) itself is an issue directly associated with treatment and social welfare. Babies, small and schoolchildren, their parents, also nursery school teachers and school teachers – CIC has become a normal activity for many of them whenever necessary. However, there are many who desperately need CIC in our opinion, but the persons themselves or their families lack the will and motivation. This mostly concerns teenagers. Just like the TV advert – such a dry and safe feelingindiapers…

9. The consequence of this is occult renal impairment with everything that follows, not to mention social exclusion because of the smell. Prior to 1993, when we started with the new method CIC, most SpB patients died before the age of 16 due to occult renal impairment. Now it seems that renal impairment is no longer a problem, because the number of young adult SpB patients that we are monitoring is less than 100 and thenumber of patientswithrenalinsufficiencyisnotworthofmentioning.

10. Another question – should we worry about SpB people who have grown into adults? • Some ‘live well’ in their own opinion, do not catheterise themselves and their medical indicators are so far normal. There have been some infections, but these have been treated. • Maybe we intervene too aggressively in the private lives and natural adaptation of these people (who in our opinion differ from the norm) withour advice and demands?

11. Others are used to catheterising themselves and cope very well. They have acquired the knowledge they need to cope with their lives. • Who should check on them when they grow up and where should this be done? • At the moment, when there is a problem, patients are individually referred to the adult system to see a urologist, but most patients decide on their health themselves.

12. ? ? Maybe we should treat people who are born with a malformation but who have adapted to life as adults as ordinary children in a family, who have been prepared for life and then have to live their lives the way they want and can?

13. ThankYouforYourAttention!