Paliatívne oddelenie pre deti na Slovensku neexistuje...

... situácia je dlhodobo neudržateľná! Domácu paliatívnu a špeciálnu nemocničnú starostlivosť potrebujú dlhodobo nevyliečiteľne choré deti s život limitujúcimi a ohrozujúcimi chorobami, či nevyliečiteľne choré deti s komplexnými potrebami. 

plamienok_1_mudr_jasenkova

Domáca liečba, MUDr.Mária Jasenková na návšteve pacienta

Tie sú opakovane hospitalizované na rôznych detských špecializovaných oddeleniach a ich zdravotná starostlivosť nie je optimálne koordinovaná.  Obvodný pediater odborne ani kapacitne nie je schopný pokryť potreby deti s komplexnými potrebami.

Detskú domácu paliatívnu starostlivosť poskytujú na Slovensku iba 4 domáce hospice fungujúce v rámci tretieho sektora, odbornú  starostlivosť o tieto deti poskytuje veľmi malý počet odborníkov.

NEDOSTATOK LEKÁROV A ZDRAVOTNÝCH SESTIER

V detských domácich hospicoch pracuje veľmi malý počet lekárov aj zdravotných sestier. Nájsť a zamestnať nového lekára alebo sestru je extrémne náročné.

Detské domáce hospice trpia nedostatkom lekárov. V PLAMIENOK n.o. pracovalo 5 lekárov na 1,8 úväzku, v Svetielku nádeje n.o. 0,8 úväzku, v Svetielku pomoci 0,1 úväzku a občas im vypomáhali lekári na dohodu o pracovnej činnosti, Pod krídlami Dominiky pracujú sestry a lekári na dohody podľa potreby. Táto situácia je dlhodobo neudržateľná.

NEDOSTATOK ŠPECIALISTOV – DETSKÝCH PALIATOLÓGOV

Dlhodobo pracovať iba v detskej paliatívnej starostlivosti je extrémne psychicky náročné, lekári potrebujú zmenu, rotáciu pracovísk a náplne práce. Lekári preto po pár rokoch práce z oblasti detskej paliatívnej starostlivosti odchádzajú. Špecializácia v oblasti paliatívnej medicíny je nadstavbová, t.j. vyžaduje aspoň 7 rokov praxe. Aby lekár zvládol závažné zdravotné problémy dieťaťa doma, potrebuje nadobudnúť dostatočnú klinickú skúsenosť a komunikačnú zručnosť. Možnosť konzultácie so starším lekárom nie je vždy dostatočná pomoc, je potrebná jeho prítomnosť na návšteve. Starší lekári, ktorí dlhodobo pracujú v oblasti detskej domácej paliatívnej medicíny, musia byť často aspoň telefonicky k dispozícii mladšiemu lekárovi aj v noci. Lekár po 50 roku života, ktorý pracoval v slovenskom zdravotníctve 25-30 rokov potrebuje v noci oddych.

Zabezpečiť 24/7 pohotovosť v oblasti detskej domácej paliatívnej starostlivosti iba v rámci tretieho sektora je dlhodobo neudržateľné. Potrebujeme systémovú zmenu.

Zatiaľ na Slovensku nepracuje ani jeden lekár s atestáciou v oblasti detskej paliatívnej medicíny. 24/7 pohotovosť v roku 2022 zabezpečovali iba 2 detské domáce hospice, s celkovým lekárskym úväzkom menej ako 2,0 (Plamienok 1,8, Svetielko nádeje 0,8).

NOVÉ LIEČEBNÉ POSTUPY ZMENILI SPEKTRUM DETÍ S NEVYLIEČITEĽNÝMI ZÁVAŽNÝMI DIAGNÓZAMI, ZMENILI SA AJ POTREBY DETÍ A RODÍN

Rozvoj neinvazívnej ventilácie u detí, rozvoj nových liečebných postupov v oblasti detskej onkológie, neurológie, raritných diagnóz významne zlepšil prežívanie detí. Mnohé majú dnes šancu dožiť sa dospelého veku. Potrebujú ale intenzívnejšiu domácu ošetrovateľskú a psychosociálnu starostlivosť.

Dlhodobá 24 hodinová starostlivosť o dieťa doma je pre rodičov fyzicky aj psychicky veľmi náročná.

KOĽKO DETÍ NA SLOVENSKU POTREBUJE PALIATÍVNU STAROSLTIVOSŤ?

Incidencia LLD v detskom veku v európskych krajinách sa pohybuje v rozmedzí 1 – 3 deti na 10 000 detí v populácii, prevalencia (celkový výskyt) je cca 10-krát vyššia, 10 – 30 detí na 10 000 detí populácii. Odbornú paliatívnu starostlivosť potrebuje cca 50 % týchto detí, t. j. 5 – 15 detí na 10 000 detí v populácii. 30 % detí s LLD sú deti s neliečiteľnou formou nádorovej choroby (najmä nádory CNS, kostí, neuroblastóm) a 70 % tvoria deti s nenádorovými LLD, najmä s neurodegeneratívnymi, metabolickými a vrodenými anomáliami a syndrómami. Viac ako 50 % detí s LLD sú deti do jedného roku života. Zo štúdií, ktoré monitorovali priania a preferencie miesta úmrtia u rodičov detí s nevyliečiteľnou formou nádorovej choroby vyplýva, že ak by špecializovaná domáca paliatívna starostlivosť bola dostupná a jej služby by boli kvalitné, cca 70 – 90 % detí a rodín by si zvolilo miesto úmrtia v domácom prostredí.

Na Slovensku v roku 2022 žilo 1 135 000 detí do 19 roku života (http://statdat.statistics.sk/), 1700 detí vyžadovalo špecializovanú paliatívnu starostlivosť. Ak by si 90 % rodín vybralo domácu formu paliatívnej starostlivosti (ako ukazujú zahraničné štúdie), potrebovalo by ju cca 1500 detí.

V roku 2022 detské domáce hospice sa na Slovensku poskytli domácu paliatívnu starostlivosť celkovo 64 deťom počas 572 domácich návštev, z nich 22 zomrelo v tom istom roku, 15 doma a 7 v nemocnici. Detské domáce hospice poskytli domácu paliatívnu starostlivosť iba 3,9% deťom, ktoré ju potrebujú. Počet detí, ktorým detské oddelenia a kliniky poskytli paliatívnu starostlivosť nie sú dostupné.

plamienok_2_mudr_jasenkova

Domáca liečba, MUDr.Mária Jasenková na návšteve pacienta

DETSKÁ PALIATÍVNA STAROSTLIVOSŤ VYŽADUJE SYSTÉMOVÚ ZMENU. INAK DETSKÉ DOMÁCE HOSPICE BUDÚ MUSIEŤ UKONČIŤ ČINNOSŤ ALEBO VÝRAZNE ZNÍŽIŤ KVALITU STAROSTLIVOSTI.

Zdravotnú časť detskej paliatívnej starostlivosti (lekára a sestry) musí zabezpečiť organizačne aj finančne štát. Nemocničná a domáca paliatívna starostlivosť musí na seba úzko nadväzovať.

Dnes detská paliatívna starostlivosť stojí na pleciach neziskového sektora, organizačne aj finančne. Táto situácia je neudržateľná.

Potrebujeme väčšiu diverzifikáciu pomoci podľa potrieb dieťaťa a rodiny.

3 nové nemocničné detské paliatívne oddelenia s názvom „Oddelenie dlhodobo chorých detí“ v troch veľkých detských fakultných nemocniciach. (Bratislava, Banská Bystrica, Košice)

Zabezpečuje nevyhnutné hospitalizácie detí (ventilácia, nutričná podpora, pravidelné kontroly, liečba infekcií a pod.)

2.     Diverzifikáciu domácich výjazdových tímov

  • lekársky – liečba infekcií, end of life care
  • ošetrovateľský (ADOS ) – ošetrovanie tracheostomií, PEG pri problémoch, zavedenie NGS, PK
  • psychosociálny – psychologické sprevádzanie v kríze, riešenie sociálnych problémov

3.     Respitná služba - lôžkové zariadenia aj výjazdová služba – spojenie ošetrovateľskej a sociálnej odľahčovacej služby.

Rozvoj starostlivosti v domácom prostredí je win-win stratégiou. Zlepšuje kvalitu života detí a rodín v ich prirodzenom prostredí a znižuje celkové náklady na starostlivosť v porovnaní s ústavnou starostlivosťou v špecializovanej nemocnici 4-5. typu.

Ak by bolo dostupné špecializované nemocničné pracovisko v každom kraji, počet hospitalizácií by sa znížil, zlepšila by sa kvalita života detí a znížili náklady na zdravotnú starostlivosť.

Väčšina detských hospicov ukončila poskytovanie 24 hodinovej dostupnosti pomoci pre nedostatok lekárov a sestier. Ak chceme na Slovensku dlhodobo poskytovať kvalitnú paliatívnu starostlivosť doma či v nemocnici, potrebujeme nevyhnutne systémovú zmenu.

ZMENA JE MOŽNÁ

Ministerstvo zdravotníctva v týchto dňoch informovalo, že sa otvorila výzva z Plánu obnovy pre zdravotnícke zariadenia, ktoré budú môcť  čerpať prostriedky na rozšírenie a obnovu kapacít oddelení paliatívnej starostlivosti.

„Náš plán obnovy ponúka zdroje na vytvorenie nielen nových lôžok paliatívnej či následnej starostlivosti, ale aj pre ošetrovateľstvo v domácom prostredí, ktoré znamená pre našich starších pacientov to najlepšie možné riešenie. Komponent 13 je pre zdravotníctvo o to významnejší, lebo práve tejto oblasti sa  doposiaľ  venovalo minimum pozornosti. Budem rád, ak výzvy budú úspešné, a aj vďaka realizovaným projektom sa podarí posunúť paliatívnu starostlivosť na úroveň 21.storočia. A to je pre všetkých nás jedinečná príležitosť.“- uviedol minister zdravotníctva Michal Palkovič:

Mgr.Dana Kamenická, hovorkyňa NÚDCH: „Národný ústav detských chorôb v Bratislave si uvedomuje potrebu zlepšenia starostlivosti a dlhodobo, vážne, nevyliečiteľne choré deti. Víta možnosť požiadať MZ SR o príspevok na vytvorenie detského paliatívneho oddelenia z plánu obnovy, do ktorej sa zapojí.“ 

Je to jedinečná príležitosť pre oblasť aj detskej paliatívnej starostlivosti. Pokiaľ detské nemocnice v Bratislave, Banskej Bystrici a Košiciach podajú projekt a  požiadajú o financie, bude možné pripraviť a otvoriť prvé detské paliatívne oddelenia už v roku 2026, tak ako sa k tomu ministerstvo zaviazalo. Dostupnosť špecializovanej detskej paliatívnej starostlivosti a kvalita života nevyliečiteľne chorých detí a ich rodín sa významne zlepší.

MUDr.Mária Jasenková, riaditeľka PLAMIENOK n.o.

MUDr. Pavol Bician, predseda OZ Svetielko nádeje

Miroslava Hunčíková, riaditeľka Svetielko pomoci n.o.

Žaneta Petrášová, riaditeľka Pod krídlami Dominiky n.o.

Zdroj foto: Plamienok

6 komentárov

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    Yes, you'll be able to take three to five grams of creatine each day, even in your days off to keep
    your creatine stores high, say Stangland and Moody.
    Creatine is generally value utilizing if you're trying to enhance your energy and energy in your
    workout routines and train regularly, based on Feder, Larson and Moody.
    When it involves finding the right creatine complement for you, there are lots
    of options on the market.
    It’s sometimes dosed at 2.5–5 grams daily, with guarantees of lowered bloating and improved exercise performance compared to
    monohydrate. Launched within the early 2000s, creatine pyruvate drew attention with a 2001 study exhibiting it increased blood creatine ranges more than monohydrate over
    a single dose. This fueled claims of superior absorption and efficacy, with customers noting a cleaner mix
    and occasional endurance boosts. Pyruvate’s metabolic function adds an intriguing twist—research on calcium pyruvate
    dietary supplements has linked it to modest fat loss, hinting
    at attainable synergy. The citric acid angle lacks robust backing—research on citrate’s metabolic role doesn’t translate to measurable performance boosts when paired with creatine.
    Whereas creatine does cause muscle tissue to retain water, this is primarily
    intracellular water, which actually supports muscle development and performance.
    In Distinction To bloating attributable to extracellular water retention, intracellular water helps preserve muscle quantity and may contribute to a more muscular look.

    Bare creatine doesn't cease at just delivering high quality; it goes the additional mile.
    The supplement undergoes rigorous unbiased third-party testing,
    particularly specializing in heavy metals. With a give
    attention to delivering exceptional results, this supplement is a testament to Kaged Muscle's dedication to excellence.
    It's a performance-driven solution that aligns with your determination to achieve greatness in each coaching session. A pivotal spotlight of Swolverine Kre-Alkalyn® is its unflavored composition.
    This strategic selection permits for seamless integration into a
    wide selection of beverages with none influence on the style profile.
    This degree of adaptability elevates the convenience
    factor, making it effortless to incorporate the complement into every day routines with
    none disruption.
    Even though you will not be an expert bodybuilder,
    creatine monohydrate is a dietary supplement that’s scientifically proven to extend bodily efficiency.
    Upon consuming this creatine complement, you’ll discover a distinction in the strength of your muscular tissues and the capability to
    conduct extra workout routines effortlessly. Whether you’re a
    bodybuilder, athlete, aged, or suffering from neurodegenerative disease, this
    creatine complement helps volumize muscle mass and gives your body a nice tone
    and minimize. This creatine supplement is in micronized
    capsules, making it easier on your body to soak up and lowering stomach discomfort.

    It’s a helpful sport nutritional dietary complement for gym-goers and bodybuilders, because
    it helps construct muscle mass and promotes muscle restoration. This revolutionary creatine supplement is formulated with 100% pure micronized creatine monohydrate.

    It consists of particles that are 20 instances
    smaller than the everyday creatine.
    When you’re lifting weight or doing a brief burst of intense activity,
    such as sprinting, your physique burns through ATP quickly.
    There isn't any good time to take creatine, however many men discover
    it helpful to take it post-workout when muscle tissue are primed to absorb vitamins.
    Creatine nitrate is a newer type of creatine
    that mixes creatine with a nitrate group to enhance blood move
    and nitric oxide manufacturing.
    Fortunately, you probably can stimulate your body’s own production of  growth hormone
    naturally by taking HGH assist supplements. A pre-workout is a supplement (typically a powdered drink mix) taken prior to train that's used to spice up workout performance.
    For many older guys it may be difficult to get going
    and keep going because of an absence of youthful power that we once took without any consideration.

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    Progressive overload is among the most elementary rules of
    muscle development. It means consistently challenging your muscles with elevated demand, whether by including extra weight,
    increasing repetitions, or intensifying your exercise.
    For chest progress, this could mean progressively growing the
    burden on your bench press, adding an additional set to your
    push-ups, or lowering rest time between units. Every small development signals
    the chest muscle tissue to adapt, grow, and turn into
    stronger. The key point with the decline pushup is to verify you’re preserving your core engaged,
    and you’re getting a full vary of motion as you decrease your self in the course of the floor.
    Dumbbells enable exercises corresponding to bench
    presses, rows, and step-ups with added resistance,
    selling muscle growth and strength. A barbell allows for heavier lifts like bench presses and hip
    thrusts, additional rising depth.
    Keep up to date with the latest insights, specialists suggestions, and confirmed strategies to reinforce your powerlifting performance and elevate your power training journey.

    The Tate press is a lesser-known exercise, nevertheless it activates the triceps and
    mimics the lockout of a bench press somewhat more than something like a
    dumbbell kickback. Entrance raises are sometimes
    done with dumbbells and in a straight standing position; nevertheless, you can angle your arms to both be directly in entrance or slightly away from you.

    One of the great issues about push-ups is you could make them as
    simple or tough as you want by simply changing the hand place.
    So, in case your objective is to reduce stomach fats, focus in your nutritional intake, portion control and increasing your daily exercise in a method that you take
    pleasure in. They are all available in our free workout log app, though some
    workouts require a premium subscription. Examples are the Romanian deadlift, stiff-leg deadlift,
    or a leg curl.
    Exercises like flat presses will hit the center and higher part
    of your sternocostal head, and decline presses and parallel
    dips will emphasize the decrease area. Dumbbells are nice for building a powerful, muscular, well-developed chest as well as improving posture.
    They offer unique advantages that you can’t get with barbells or body
    weight exercises and are a fantastic tool to
    utilize when concentrating on chest fats loss. The dumbbell
    decline bench press targets the decrease part of your pec major sternocostal head.
    If you want to develop a strong distinction between your chest and
    abs, this is a great one.
    Let’s take an in-depth take a glance at the workouts and workouts, with detailed instructions on the method to
    carry out each movement with proper form and in the most effective means.
    As Soon As you’ve got the basics down, why not level up your
    routine with some advanced techniques? This could embody drop units, supersets, or pre-exhaustion strategies.
    These might help crank up the intensity of your exercises and stimulate much more muscle development.
    You can do push-ups in sets of 10 to twenty reps if
    you’re a newbie, and up to 30 reps or more if you’re a professional.

    There are two primary precautions to contemplate earlier
    than utilizing compound chest workout routines. Firstly, it’s crucial to
    prioritize correct type and method earlier than beginning
    compound chest workouts. Sustaining correct form and method involves learning and practicing
    the right execution of the compound chest workouts to attenuate the chance of injury and maximize effectiveness.
    Athletes should search steering from a qualified fitness professional who can provide valuable insights, and ensure safe performance.

    Secondly, gradual progression is important to avoid overworking your muscle tissue.
    Start with an acceptable weight or resistance degree
    that enables for proper form and management, and steadily enhance the intensity as strength
    and approach enhance.
    The only potential method to full this motion is with proper stability from your toes up through to your head.
    The single-leg push-up is one of the most challenging
    kinds of push-up. The Hindu push-up is a conventional Indian-style train practiced by wrestlers.
    Many machine fly variations can be found to try, requiring several
    sorts of machine flying gear. The pullover works instantly on the serratus anterior muscle to develop the back.

    The sternal head is additional divided into the middle and lower chest.

    This a part of the muscle originates from the sternum and the higher six costal cartilages connected
    to the ribs. Most individuals think you may be only stretching muscle tissue when doing stretches,
    but that is mistaken. The fascia which surrounds the muscle
    like a web can additionally be getting stretched.
    When it's cold it's more durable to drag apart however when it's
    warm, it’s simply stretched. As talked about a
    quantity of occasions right here, the inner chest is not something
    you can hit individually and call it a day.
    Thirdly, a chest workout at residence successfully develops and strengthens the chest muscle
    tissue, enhancing upper physique power and aesthetics.
    Constant training results in increased muscle definition and improved total physical fitness.
    Fourthly, partaking in chest workout routines at house helps improve functional motion patterns and posture.
    Strengthening the chest muscular tissues contributes to higher higher body stability, posture, and the power to carry out every
    day activities with ease. Whether Or Not you’re a beginner simply beginning out or a
    seasoned lifter seeking to break through a
    plateau, understanding the fundamentals of chest training can make
    a major difference. By incorporating these workout
    routines and tips into your routine, you’ll be properly on your method
    to constructing a fuller, stronger chest that enhances your fitness targets.

    A chest exercise on a bench is a series of workout routines particularly focusing on the chest muscles, carried out whereas
    mendacity or sitting on a bench.

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