House of Death or House of Hope: First Belarusian Children’s Hospice
On 16 June the new building of the Belarusian Children’s Hospice (BCH) will open its doors in Baraulyany, just 20 minutes outside of Minsk. First of a kind in the country, it has been helping terminally ill children and their families since 1994. They actually pioneered both: hospice and palliative care.
A team of 25 health care professionals at the hospice helps children who are nearing the end of their lives. They maximise their comfort by reducing pain and addressing psychological, physical, and spiritual needs of such patients.
Palliative care is for children who have serious but stable conditions. It focuses on providing relief from the symptoms, and improving quality of life for both: such children, and their families. Each year more than 250 children receive much needed care in Belarus through children’s hospice.
How it all started
The Belarusian Children's Hospice first appeared in Minsk, in 1994. It was founded by a child psychologist Ms. Anna Garchakova, as a response to the ongoing consequences of Chernobyl. It initially occupied an empty kindergarten in the suburbs, and worked on the sheer enthusiasm of a handful of dedicated people.
In 1998 came the first turning point. Ms. Daryl Ann Hardman, a UK citizen, began her humanitarian activities in Belarus by delivering goods and hosting Belarusian children in her home in the UK. What started as a private initiative soon grew into a full-fledged operation.
Ms. Hardman established a humanitarian organisation in Britain and tellingly named it “Friends of Belarusian Children’s Hospicel”. It started off by purchasing a wooden house on a smallholding in a village outside of Minsk and gifting it to BCH in 1999. They used it for hospice family holidays for many years, until its current main building in the Minsk suburb of Baraulyany was purchased and converted for hospice use.
Shortly after BCH began working on an adapted UK model of children's hospice at home. The main philosophy was to provide care for children with different life-limiting conditions whenever possible in their home, and not at a hospital. Currently according to BCH data, anywhere from 3,000 to 5,000 children in Belarus require palliative care.
Palliative care comes to Belarusian children in the form of a BCH medical team consisting of a doctor, nurse, social worker, carer, and BCH volunteers. With the family's help they assess the child's and the family's needs. Then they do their best to meet these needs: medical care, advice, social welfare, psychological support, counselling, social programme, and summer holidays. Families may join a bereavement programme.
A new building, old challenges
For some ten years the UK Fund covered the cost of the BCH staff basic salary bill and provided advice and training in the UK. In 2010 with the training from UK specialists, the BCH set up its own dedicated fundraising and PR department. This now covers 60% of annual staff basic salaries, another 40% still come from foreign funds, namely the UK charity.
In 2011 Anna Garchakova announced the need for a new bigger, more modern building for the BCH. It would cost $4 million.
“While $4 million may seem as a lot, we only need 400,000 caring Belarusian people who would each give us 10$ for a brick”. Read more
So far the BCH has just raised $1.75 million to build a modern, state of the art hospice, also in Baraulyany. The Friends of BCH raised another £250,000 in the UK. President Lukashenka donated land for hospice free of charge with a decree. The new building is due to be opened mid-June amid a fanfare of publicity.
In the earliest stages, the architect of the building came to the UK at the invitation of the Friends of BCH charity to see successful children's hospice buildings. He also met one of the best children's hospice architects in the UK. As a result he was subsequently able to incorporate many of the ideas from this visit into the new hospice venue.
Ms. Daryl Ann Hardman continues to support BCH. She now heads the Advisory Council.
I also revived BCH's Advisory Council and have chaired it for over 3 years as no Belarusian participant has yet agreed to take the chairmanship over. This is a body of mostly Belarusian top managers, company directors, one ex-Minister and some UK advisers, who meet 3 or 4 times a year to offer strategic development advice and fundraising help to BCH's director. The Council has been very focussed in recent meetings on building the new hospice building.
What comes next
The new unprecedented arrangement stipulates that the state will run the medical side of the new hospice, and BCH and partners the other parts, in a building owned by an NGO. This carries some potential for clash of interests between the main stakeholders. Rigid state’s way of operation does not bide well with individualised approach to palliative care.
BCH was tolerated rather than welcomed when it first came on the scene in 1994. Many people were suspicious of it as a western idea that had no place in Belarusian healthcare, others did not understand its aims, some regarded it as a "house of death" instead of a house of light, joy and good quality of life.
Gradually both the Belarusian public, media, medical services, ministries and other governmental departments have come to gain a better understanding of the huge benefits a children's hospice. Namely what added value it brings to the country's healthcare, both in terms of vastly improved quality of care and quality of life of the chronically and terminally ill child and their family.
From the financial standpoint it also means huge savings for the state medical service when a child on 24-hour care is at home instead of in a hospital intensive care department. For the past decade BCH has trained medics from all over Belarus in children's palliative care and hopefully will be able to expand these programmes in its new education centre.
Audit of Belarus-Ukraine Relations, Obstacles to Higher Education Reform – Digest of Belarusian Analytics
80% of Ukrainians consider Belarus the friendliest country: Belarus-Ukraine foreign policy audit event in Kiev airs on national TV in Belarus. BISS Foreign Policy Index: after the lifting of sanctions EU-Belarus relations have entered a new period.
Libereco analysis: no signs of liberalisation after 100 days since the EU abandoned its sanctions against Belarus. Belarusians become more indifferent to people with disabilities, according to fresh survey of the Disability Rights Office. BOSS presents analytical report on the situation with students’ mandatory job placement in 2016. This and more in the new Digest of Belarusian Analytics.
Foreign Policy Audit: Ukraine-Belarus. On June 8, in Kiev, Institute of World Policy presented its research on the current relations between Ukraine and Belarus. The report shows that more than 80% of Ukrainians consider Belarus the friendliest country. The discussion was attended by Belarusian experts Jaŭhien Prejherman, expert initiative Minsk Dialogue, Andrei Scriba, the Institute for Privatisation and Management, and diplomats.
To Belarus-Ukraine Strategic Cooperation: Benefits and Challenges – Andrei Scriba presents his study that offers opportunities to encourage the development of Belarusian-Ukrainian cooperation. In particular, Belarus and Ukraine interaction should be as inclusive; that is, it's necessary to engage other countries, first of all, post-Soviet states and EU countries in Eastern Europe.
Belarus Foreign Policy Index #31 (March–April 2016) – BISS presents its regular issue of Belarus Foreign Policy Index, which explores Belarus’s foreign policy in the five key dimensions – Russia, EU, China, “developing world”, and Ukraine. In particular, in relations with the Russia, Belarus has found compromise solutions on a number of areas of cooperation. After the lifting of sanctions, EU relations have entered a new period.
Belarus Between Elections: Lukashenka Limited – Balázs Jarábik and Alena Kudzko believe that without a finessed approach in the West, Lukashenka, always a deft maneuverer, might not be able to continue to resist falling under the spell of Russia’s influence. The EU`s policy should not sacrifice democracy for the sake of security, but the former should be viewed as an endgame instead of an ultimatum defining the entire relationship.
Second Monitoring Report on Implementation of Belarus Roadmap for Higher Education Reform – The report is drawn by the Belarusian Independent Bologna Committee and the Ad Hoc Commission of the Belarusian National Platform of the EaP CSF. The report covers the period from January to June 2016. As before, the main obstacle to the Roadmap implementation is the absence of a clear regulatory and legal framework that would serve as a basis for the fulfilment of Belarus’ obligations.
Modernisation of Higher Education in Belarus: Social and Humanities Sciences – Centre for European Studies held a study on academic mobility, communication between teachers and students, creation of curricula and programmes. One of the findings of the study is that the standardisation of education seems to be brought to absurdity and does not ensure quality. Students are quite happy as the background of reducing demands allows getting a diploma easily.
Analysis: 100 Days of Belarusian Rule of Law – June 3 marks 100 days since the EU abandoned its sanctions against Belarus, suggesting that a process of liberalisation in the authoritarian state merits such a decision. However, an analysis by human rights organisation Libereco – Partnership for Human Rights shows that the country is still far removed from rule of law and respect for human rights. In several respects the pressure on civil society has been heightened.
Human Rights Situation in Belarus: May 2016 – Human Right Centre Viasna released its monthly monitoring on human rights in the country. The issue notes that during the month, there were some negative trends indicating the deterioration of the human rights situation in comparison with the previous months, namely, due to the Critical Mass peaceful cycling event's crackdown and two participants facing criminal charges.
Mandatory Job Placement of Young Professionals In 2016. Analytical Report – The Brotherhood of Organisers of Student Self-government (BOSS) presents an analytical report on the results of the mandatory job placement’s campaign of 2015/2016. The report summarises the facts of legislation violations and pressure on students. The report includes an analysis of the data on-line questionnaire of 141 graduates. Namely, 56% of the respondents are satisfied with the results of their assignment, while 31.9% answered negatively.
Belarusians Become Indifferent to Persons with Disabilities – Over the past five years, a higher percentage of Belarusians has come to an opinion that people with disabilities should learn, live and work in special conditions, rather than to have equal opportunities with others. Namely, according to a fresh survey of the Office for Rights of Persons with Disabilities, now only 30.7% of Belarusians believe that the inclusive education is “rather helpful” (in 2011 – 46.1%).
Will the Opposition Gain Seats in the Belarusian Parliament, and Is That Still Relevant? – Grigory Ioffe notices that in a post-Soviet state still lacking a healthy democratic tradition, unbending external demands that Minsk make room in the parliament for the opposition could well backfire. Not recognising and properly taking into account actual realities risks Western policymakers once again losing Belarus.
Tax Freedom Day Belarus 2016 – Liberal club releases an annual study that shows how many days the nation is working to get rid of the tax burden of the state, and reminds citizens that they have to share part of their private property for the sake of society. The study's calculations show that the day of freedom from taxes in 2016 begins on May 15, ie Belarusians should work for the state nearly 136 days.
Belarus Digest prepared this overview on the basis of materials provided by Pact. This digest attempts to give a richer picture of the recent political and civil society events in Belarus. It often goes beyond the hot stories already available in English-language media.