In 2004, the National Health Insurance Fund (NHIF) and the Ministry of Health made an important decision to create the legal framework and financial foundations of hospice care as an integral part of the health service. On September 1st a two-year model programme started, under which the NHIF supported service givers and hospital wards which provided hospice care for cancer patients and their families from a monthly fund of HUF 100 million. This was intended to multiply the number of people who can have access to hospice care.⁹

Dr. Csaba Simko, medical director at Elizabeth Hospice (Otthon), and vice-president of the Hungarian Hospice Palliative Association stated:

‘From September 2004, there is a new, special hospice financing system which takes the whole hospice team into account. It provides a real possibility to maintain a hospice homecare team and covers about 70% of the expenses of an inpatient unit… Up to now non-profit organizations (foundations) [were] the main constitutional form but from this time for-profit organizations also started to work in this field.’¹⁰

Since 2004, 42 hospice services out of 57 have been financed as 'hospice services' by the NHIF (11 inpatient services, two nursing home, and 29 home care services). However, there is still not enough financial support from the National Health Insurance Fund.¹¹ The operation of the Hungarian Hospice Foundation, for example, depends heavily upon the donations of individuals and corporations, and in 2004, the National Health Insurance Fund provided only 6% of its budget. Dr Katalin Muszbek, Director of the Hungarian Hospice Foundation, suggests that whilst funding for education/training initiatives is not too difficult to obtain, the funding of daily activities within the hospice is considerably more difficult, particularly for psycho-social activities.¹² For many organisations, there is often not enough money to start and maintain palliative care programmes (especially inpatient units); this lack of acceptable financing has weakened many organizations, and some of them have changed the direction of their activity.¹³

Thus, despite the additional funding provided by the NHIF, hospice and palliative care initiatives still need to raise money from alternative sources. Katalin Muszbek suggests that this way of thinking is often difficult in post-communist Hungary:

‘…you know, some people are thinking in Hungary that everything should be covered by the budget because people are used to that coming from the organised health care system, that they are working in a hospital, they have the beds, they have the medicine, they have the salary, they have everything. But if anybody is working with hospices, we have to realise and we have to recognise that about 50 per cent of the money is coming from the budget but we have to add about 30 per cent of the money from different resources, and these resources can be different grants, different applications to the EU and other groups, and fundraising from the community – and also money from the churches and from other sources. So I think, and this is one of the tasks of our Foundation, because we are quite advanced in the management and in PR, that we will organise some courses for the Hungarian people [on] how to do management, how to, how to change the traditional management, how to [do] fundraising, how to make PR in Hungary to get more money or more resources – not only money but also human resources.’¹⁴

These sentiments are echoed by Dr Agnes Ruzsa, the second President of the Hungarian Hospice Palliative Association, speaking in 2004:

‘I think now I think it is a very important time, a very important point which occurred now in Hungary because the National Health Service can support the hospice and the palliative care units in this year, so I think never, ever was this such an important time, because now there is a possibility for every service who want to take care of dying patients to be supported by the government and to be financed by the government, but it is also important that it is only 50 or 60 per cent of the financial support, and I think that it is very important that the services have to look for other possibilities for charity and for, I think, for some tax support or anything else.’¹⁵

Since 1997, the Hungarian Hospice Foundation has secured funds to develop the home care service, to enhance the management of pain relief, to establish a volunteer programme and to develop the hospice house project. The hospice mobile team at the Jewish Charity Hospital was awarded funds to establish the service, to educate team members and to cover salary costs. The Hungarian Hospice-Palliative Association obtained grants to publish national palliative care standards, to translate those standards into English, to publish hospice news and to develop a national programme of palliative care education.¹⁶

Other sources of additional funding include: local governmental support; grants; donations; and the 1% tax law. The Hungarian tax system contains a paragraph allowing citizens to assign 1% of their salary to the support of local organisations, churches and foundations, which increasingly benefits hospice institutions.¹⁷ The Hungarian Hospice Foundation is a special charity, and so anyone paying taxes in Hungary can donate 1 per cent of their income tax, an option of great value for both the Foundation and for those people who want to help.¹⁸

NHIF financed hospice services that use other funding sources:

Magyar Hospice Alapítvány
Szombathelyi Hospice Alapítvány
Miskolc, Erzsébet Hospice Alapítvány
Gyula, Pándy Kálmán Hospice Osztály
Debrecen, Szent Erzsébet Hospice Házi Beteggondozás
Miskolc, Erzsébet Hospice Otthon
Budapest, László Kórház
Pécs, Szociális Háló Egyesület
Kaposvár, Nevitt Cindy Szolgálat
Sóstói Idősek Otthona, Hospice Részleg, Naplemente Alapítvány
Tatabánya, Nefelejts Ápoló Ház
Pécs, Betegápoló Irgalmas Rend, Hospice
Eger, Markhoz Ferenc Kórház, Hospice
Budapest, MÁV Kórház, Hospice
Zalaegerszeg, Mónika BT
Pécs-Baranyai Hospice Alapítvány
Budapest, Szent Rita Szolgálat
Pécs, Baranya megyei Kórház, Hospice
Budapest Hospice Ház
Szeged, Gondoskodás 2003
Majosháza, Református Egyházközség Szolgálata
Salgótarján, Tábita Szolgálat
Váci Home Care

In 2002, Katalin Muszbek revealed an unexpected source of income - a charitable donation from events organised through the Charles Dickens Heritage Foundation, by a descendant of Dickens with a family connection with Hungary:

‘What kind of support could I get this year? Charles Dickens’s great-grandchild visited us: she has a Hungarian relation on the mother’s side, and she visited some Hungarian NGO’s looking to support a civil organization, because there is a Charles Dickens Heritage Foundation, and she visited a lot of groups, and she also visited our Hungarian Hospice Foundation. And I introduced our project, and the hospice house and she – her choice, or the choice of this Board, was the Hungarian Hospice Foundation. And they organized A Christmas Carol Ball and the income, the pure income was 10 million Forint, and all the audience were mainly British persons who are working here in Hungary, and you cannot imagine what they did – they put the 10,000, the 50,000, the 100,000 Forints into a pot and they offered [them to] us.’¹⁹

An imaginative promotional campaign raised funds from a wide variety of sources after support had been forthcoming from high profile Hungarian personalities. Katalin Muszbek describes the background to the campaign:

‘…it was a survey done by Katalin Hegedus in 1999 about the perception of hospice, the word hospice in the country; none of the people we asked knew the word so we started in 2001 with a huge campaign and in 2002 we repeated it… the aim of this campaign was to change the public mind about death and dying because it’s a taboo in Hungary, nobody speaks about it, and when the people are thinking about things like cancer everybody is very afraid of the suffering but nobody is saying ‘oh I can die’ or ‘what about death and dying’ so it was really a taboo…so we started with this publicity campaign involving three key persons, actresses and artists from Hungary who are very famous and a film of testimony was done by them…It’s a lovely film, its three really lovely films, and at the same time we put billboards on the street, indoor posters, and the publications in the newspapers, and for two weeks maybe at the beginning, one of the most well known actress was coming in and I was going to meet her every morning and every evening she gave interviews to different television stations because the people do not listen to me, but the people will listen to this young actress. So it was running for two months in five Hungarian spoken channels and in one year there were about 100 publications in the newspapers, television, radio and everywhere.’²⁰

One of the key persons involved in the campaign, actress and film star Kate Dobo, describes her motivation to help the Hungarian Hospice Foundation:

‘Just like a lot of people in Hungary, I also went through a distressing and anxious period in my life: 2 years ago I lost my grandmother who died of cancer. During her treatment, we experienced how humane the care was where hospice was present…All the good things that have happened to me in the past four years…are actually gifts that I feel I must return. I am confident in saying that if you fail to give, life does take something from you…I adore my job, I love learning and I incredibly enjoy making films. All this, however, does not suffice. I realized it when I myself became involved in this sad topic by losing my grandmother. When hospice helped in her care, I promised I shall return the favour. That is why I am trying to help now. May I please ask for your help to let the first Hungarian Hospice House come true.’²¹

Since the television publicity campaigns relating to hospice and palliative care in Hungary that featured well-known Hungarian personalities were shown, there has been a substantial increase in the number of people contributing to the funding of the hospice via the ‘1% tax law’. Katalin Muszbek explains the possible reason for this increase:

‘I think it was the basis of our successes because our activity before was very nice clinical work and education, but it was recognised because the whole hospice programme, or the mission, mission of the hospice was not clear for anybody in the country, not even for the public. The people didn’t know what hospice means, and to some families whose relative was cared for in a hospice, they were very much for it, and they recognised it of course, but generally it was not recognised. So that was the reason why we decided to organise, to make this national publicity campaign, and it was a very high quality campaign so it was not a regular campaign, and the people who could see these spots on the television immediately opened their eyes and said ‘Look, it’s something special’...it touched everybody because although the people are not speaking about dying people, everybody has a relative who died…and a lot of interviews were done, and additionally we made a report about the last year, about our professional programme and about our budget, so we wanted to avoid that failure, not to be transparent, and we put it also into the newspapers and we advertised our final report about the previous year. So this different information was coming to the people and this resulted in a huge awareness increase.’²²

Katalin Muszbek recalls the fame she encountered following the publicity campaigns and her subsequent appearance in Cosmopolitan magazine:

‘I can tell you a small story, after this campaign I was going into a shop and a 20 year old lady with long painted nails was asking for some paper. When I was asking for the bill she told me that she thought ‘this is the Hungarian Hospice Foundation!’ and she looked at me and said ‘you have this wonderful face on the television!’ and congratulated me on how nice it is and she wished me a lot of energy and for such a woman who is going just into disco’s and nothing is interesting, so for me it was really something I thought it was a success that such a young woman who does not care [about] anything [but] to dance and look good and she says ok, this is fantastic!’²³

A number of charity concerts have also been held in the St. Stephen's Cathedral, the Kálvin Square church, the Óbuda Club and the Music Academy, featuring artists like Veronika Kincses, Márta Sebestyén, Zoltán Kocsis, Dezsõ Ránki, Gábor Presser, and the Hungarian Hospice Foundation patrons, the Amadinda Percussion Group. In October 2006, the Foundation organized the event Hospice Voice for the sixth time in a row, held at the church at Kálvin tér. The musical programme was presented by the Budapest Bach Orchestra conducted by István Ella. The Messiah by Handel was presented as a routine part of the programme. Besides their charitable purposes, such concerts have also helped to raise awareness of hospice and palliative care in Hungary. The purpose of this worldwide event is to attract widespread attention to the problems of cancer patients and the terminally ill and to accentuate the need for help.²⁴ However, Katalin Muszbek also suggests that although there is now a better understanding of palliative care in Hungary, the fear of pain and the concept of ‘hospice’ continues to play a major part in the public perception of cancer.²⁵