Apr 10, 2019

January-March

On March 17, amendments to the Federal Law on Fundamentals of Health Care for Citizens of the Russian Federation, which cover issues of palliative care, came into effect.

Earlier the federal law explained palliative care as a combination of medical interventions. However, at the end of life a person requires much more than just medical care. Palliative care is seen worldwide as medical and social care provided not just to the ill person but to his or her entire family. The new definition introduced into the law brought us as close as possible to such a systematic approach.

Now the law guarantees each patient the right not just to medical care, but to psychological assistance and involvement of social services in providing palliative care.

This means that our patients have got the right, at the end of life, to preserve their identity and their usual way of life even if the terminal illness took away their independence.

For us the adoption of this amendment means that patients under home care now have the right to receive complete palliative care, including medication and a social worker. In other words, a patient gets the right to stay with his or her family and receive all the necessary care at home.
This also means that patients in medical facilities now have the right to receive palliative care even if they can't express this wish themselves and sign a consent form. At the moment, it is enough that patients confirm their consent for care with a gesture. If they are unable to do even that, their doctor can gather a medical council and make a decision on this case.

 We have more fantastic news about the new opportunities for our patients! The Department of Respiratory Support, which opened at the Palliative Care Center a year ago, discharged the first patient with a lung ventilator, Pavel.

Why is this so important for us and sounds as if he were the first person who landed on the Moon?

The reason is that now people who can no longer breathe on their own and have to stay in intensive care for a long time due to a severe, progressive disease, these people can return home!

From the intensive care unit, patients are transferred to the Moscow Multidisciplinary Center for Palliative Care where their families are trained in providing proper care and controlling the device. Patients are not scared to go back home, because now their families are confident in using the device and have the support of the mobile service team which visits them regularly. How cool is it that everyone who needs constant respiratory support will get a chance to live at home!

 But even if a patient stays at the hospice clinic or at the clinic of the Palliative Care Center or its Department of Respiratory Support, family can visit round-the-clock. So, the time spent there will be interesting and eventful for patients and their relatives. For example, at the Moscow hospices, during the last three months, our volunteers not only organized numerous master classes, concerts, and “joy carts”, but also celebrated the traditional holidays: the Defender of the Fatherland Day when hospice patients and their families were congratulated on their courage and perseverance in the face of their illness; Maslenitsa, or Pancake Week, when hospice residents made pancakes, laughed at the jokes of Skomorokh the clown, and recited witty and mischievous verses to the volunteers; the International Women's Day when hospices smelled of fresh tulips and were full of smiles of their female residents and employees.

The memory that stands out the most is the one of Alexander Bembeyevich, a patient of the Degunino hospice. He asked his daughter to buy some tulips and gave a flower to each nurse, aide, and coordinator who entered his room.

 All of this is possible thanks to your regular support. Thank you so much for contributing to the work and development of our fund and, together with us, giving the gift of life to hospice patients—life for the rest of their life.

 

Our foundation has been spending the average of 121759$ to cover for the following needs of Moscow hospices:

 01.01.19 through 31.03.19

Meals – $1528

Financial support to hospice staff – $12164

Coordinators’ work – $78872

Other expenses - $29195

 

 *We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

Apr 10, 2019

January-March

February 23 is a major holiday in Russia—the Defender of the Fatherland Day. It's a celebration of courage and perseverance in the face of adversity. In honor of this holiday, two years ago we shared stories of courageous dads—dads who bear no arms but who always have to live with a feeling of being on the battlefield, because you have to fight a war with a terminal illness of a child even if you're a pacifist. So, this year we decided to write and update about them and how they are doing.

Evgeny, Labinsk, Maxim's dad

“Maxim is the third child in our family. Our oldest child is healthy, but we lost the second one. At that time, there was no diagnosis as such: for four years our critical care physician was trying to pull him through—without anything, without therapy, on symptomatic treatment alone—but... he's gone.

Then Maxim was born, and it became clear that the situation was identical with the previous one. However, Max already has a diagnosis and treatment (though only provisionally efficient). By this age, Artyom was already gone, and he lived his life bedridden, while with Maxim we can even sit and play," Evgeny said two years ago.

Here is what he says this year:

“Max is now at home.

Back then, I believe, we were still in intensive care, and now, thanks to the Fund, we have our own lung ventilator and equipment.

 Nikita, our oldest, plays with Max every day, talks to him. They watch cartoons together.

 We don't plan, we live day by day: we're alive today—it's already good. This is how we do it.

 Max's speech has become more comprehensible. Well, comprehensible in a sense... Generally speaking, except for us, no one understands him, but he started to speak in sentences. We quote songs, cartoons. When we read his favorite stories, he speaks along because he knows them by heart.

 We're homeschooling as of September 1.

We know our letters and numbers. We can’t write, because Maxim's muscle state has worsened: one arm, and it barely works.

 People (the teacher, for instance) often tell my wife: “How can you be so calm? I would have lost my mind already." Somehow, we don't. It's been so many years, and we manage everything. We wish it could be better, but we're at home, we're together. Everything is not as bad as it could have been.”

 Vyacheslav from Barnaul, Polina's dad, says: “Everything is the same: I go to work during the day, and the day is gone; I come back home at night, and it's time to put everyone to bed. So, I spend a full day at work, but then I still have a day left. But I'm still at home, I don't go off the grid!

 At home, I help with the second kid: the son, Artyom, is all mine (we had him in 2015). I put him to bed, and my wife puts Polyushka to bed.

Artyom, our youngest, loves Polina. He comes, kisses her hand, and says: “Oh, Polyusha, I love you so.” He is nice with her, gentle.

 In the summer, in July and August, we go to a resort. It's beautiful, almost empty, and there's flowers and a pine forest. If it's not windy or rainy, we go straight to the pine forest. In June we don't—there's a lot of mosquitoes, and recovering from mosquito bites is extremely hard for our child.

 Oh yes, last year we went to an ostrich farm. Polina gets exhausted quickly in a wheelchair, but an hour's walk is manageable for her. She liked ostriches.

 My wife helps Polina to learn sounds, words, names of animals.

We're hoping to find an in-home teacher to help with motor development, as well as a speech therapist.

My wife and I are not teachers by any means, but we give Polyushka what we can.”

 

We are happy to support all of our wonderful and incredibly strong families with terminally ill children. And we're so glad that we always have your support, thanks to which the work of the Children’s Program becomes possible.

We would like to share the results of the Program in 2018 with you:

  • In 2018, 440 children in 66 regions of Russia received aid;
  • The average monthly budget of the children's program was 7.45 million rubles;
  • We signed 2847 agreements;
  • We conducted 840 legal consultations, 382 psychological consultations (with a schedule of 3 days a week), 417 medical consultations and 12 medical trips, as well as a countless number of consultations by coordinators.

 We achieved these results thanks to consistent help from you! Thank you so much for this!

 

 Below is the data on allocated charitable expenditures this time:

 01.10.18 through 31.12.18

 Medical equipment and its service … $86684

 Equipment consumables…………..... $73118

 Special nutrition……………............... $87916

 Financial help to families …............... $14635

 Transport services …………….......... $11860

 Funeral services ……………............. $2670

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $43002

 Total …………….............…………….$319885

 

*We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

Jan 11, 2019

October-December 2018

Today we want to share our main achievements over the past three months.

We received a Grant from the Mayor of Moscow for one of the largest and most complicated projects of the Fund — a project to support hospices and their patients. This project is the heart of VERA Fund. Our Fund started with this project 12 years ago. Most often we tell you about hospice events organized within the framework of this project.

The Grant covers more than 10% of the project costs (total project budget for 12 months — 23 583 240 rubles), which will help us feel a little calmer.

 

We has restarted the web portal "Pro Palliative". It’s like Wikipedia about help at the end of life.

When a person learns about an incurable disease, he becomes afraid. And it’s important to give him the opportunity to easily find reliable information collected in one place and presented in an accessible language.

This place will be an educational portal "ProPalliative", which collected everything we know about palliative care: from simple materials for seriously ill people, their loved ones, and just interested — to highly specialized, which will be useful to hospice managers, doctors and nurses.

 

VERA Fund received a Presidential Grant in the amount of 13 295 525 rubles for the project "The Right to assistance at the end of life".

We often write that terminally ill people and their relatives don’t know where and how to get help. They rarely explain what will happen to them next, how to relieve their condition, how to get painkillers and protect their rights. They are confused, scared and don’t understand how to live. We try to make information about the right to assistance as accessible as possible.

As part of this project, we will continue to develop our Hotline to help terminally ill people, which works around the clock and seven days a week, free of charge, and ask questions about the care of the seriously ill, about painkillers, about hospices and so on. We will fill the educational resource about palliative care "Pro Palliative" with new information.

The Grant will help us to ensure the round — the-clock operation of the Hotline and decent work of the Pro Palliative - so that as many people as possible of our country know where to find answers to questions in the most difficult period of their lives.

 

Besides we had a race of Santa Clauses (when a half thousand people ran 5 km or 10 km), collection of Christmas gifts, concert of Nikolai Baskov and many other wonderful events.

VERA Fund's volunteers came up with a new Christmas tradition - decorate windows with beautiful winter paintings, so that there was a holiday everywhere.

 

Thank you for this year!

 

Our foundation has been spending the average of 157362$ to cover for the following needs of Moscow hospices:

 01.10.18 through 31.12.18

 Meals – $1971

Financial support to hospice staff – $19730

Coordinators’ work – $97513

Equipment consumables - $25326

Other expenses - $12822

 
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