EVENT: 1ST RO CENTER FOR CHILDREN WITH INCURABLE DISEASES – HOSPICE CASA SPERANTEI

OPPORTUNITY

HOSPICE was born out of a dream. The dream of a man familiar with the struggle of fighting incurable diseases. A man that in 1991, during a trip to Romania, decided to visit a cancer hospital in the city of Brasov. Following his visit, he discovered that there were no care services for terminally ill patients and that they were sent home to die without even getting access to pain relief nor to emotional, spiritual or psychological support. In that moment, an idea bloomed in his mind – that perhaps he could use his experience to do good, to help. That was the moment that he decided to do something for the children and adults in Romania diagnosed with unforgiving diseases. 27 years ago, in 1992, Graham Perolls first brought palliative care services to Romania and established HOSPICE Casa Sperantei (Hospices of Hope) Foundation. Since then, 30,000 children and adults diagnosed with incurable diseases learned how to cherish every moment of their life and found relief at HOSPICE, an organization which is now recognized as a benchmark in the field of palliative care. The Foundation offers free and unconditional support to patients in need and their families, regardless of their financial condition, social status or the environment from which the patients come.

According to an assessment destined to evaluate palliative care in Romania conducted in 2017 by the Ministry of Health, 17 Romanian counties completely lack this type of care services and less than 2% of the general practitioners active in the country actually possess basic skills of palliation – even though, according to the survey, there are over 172,000 people that require, annually, palliative care. Furthermore, as a completion of this analysis, an internal assay of the Hospice Foundation brought to light that there are about 5,000 children living in Bucharest and the city’s surroundings suffering from one of the many rare genetic diseases.

With two operational facilities that offer palliative care to both adults and children – one in Brasov and one in Bucharest – HOSPICE Casa Sperantei (Hospices of Hope) is much more than a house: it is refuge and a symbol of hope which reminds us all that if we humans are willing to stand together we can offer happiness and dignity to all those in need. This belief served as our resistance pillar when we have decided that Romania needed a third facility – the first socio-medical centre in Romania and in the region dedicated exclusively to children suffering from incurable diseases. A couple of years, 8.760 working hours and 1.7 million euro later, thanks to the generosity and continuous support of the Foundation’s sponsors and donors, HOSPICE Copaceni came to life.

RESEARCH

The idea of developing a socio-medical centre at Adunații-Copaceni first rooted in our mind in 2013, when the Foundation received an important donation on behalf of the Florescu family – a generous estate that houses, alongside various administrative buildings located on splendid natural surroundings, a manor supposedly to have been built around 1897. The transformation process required a serious mobilization of resources and for gathering those resources we have conducted some rigorous research on the topic of palliative care.

When talking about palliative care in Romania the aftermath is quite concerning: at a country level, there are only 1,779 palliative care beds, out of which (45%) are to be found in the North-East Region of the country (815 beds). However, almost half of these beds (370) are available only in private hospitals that operate under a paid system, so it is important to take into account the fact that they are not accessible to the entire population.

There are 17 Romanian counties that do not have palliative care beds in the public system nor in the non-profit one. The southern part of the country has the biggest deficiency when it comes to the number of palliative beds, while the South-West region has only 1% of the total palliative beds in the country (22 beds in Dolj county) and four other counties without no palliation beds.

At a country level there are not sufficient palliative care teams: only 13 teams. Bucharest is the only city benefiting from a complete team that offers home care palliation and that is the team of HOSPICE Casa Sperantei.

There are only five day-care centres in Romania (1 in Arges County, 1 in Dolj, 2 in Brasov and 1 in Bucharest) and only 3 outpatient care centres specialized in palliation (2 in Brasov county and one in Bucharest). Outpatient care, both in Brasov and Bucharest, are offered free of charge by HOSPICE Casa Sperantei. Likewise, all day centres operate under the lead of non-governmental organizations.

Aware of people’s need for palliative care and led by the dream of offering hope and joy to children suffering from incurable diseases and to their families, in 2017 we have managed to start a complex process that meant turning functionally part of the buildings located on the domain’s land, including the manor (a heritage building). One year later, on September 21^st, 2018 the dream came true: we have inaugurated the 1^st socio-medical centre in Romania – HOSPICE Copaceni.

PLANNING

• Audience: Romanian journalists, TV reporters and newswires (morning event); Hospice ambassadors, sponsors, donors, honorary patrons, patients and members of the Hospice team – employees and volunteers (afternoon event).

The press conference and the ribbon cutting event had each some very important objectives: to raise awareness on the new centre and to celebrate together with Hospice’s benefactors the inauguration of the new facility.

The different approach towards palliative care, the various type of therapies – from classical to revolutionary ones, the presence of technology and the overall good vibe of the location – all of these make HOSPICE Copaceni an unique project, not only in Romania, but also in the region. Thus, in the honour of all Hospice ambassadors, sponsors and donors that contributed in bringing to life this socio-medical centre, we decided it was time to let the world know about its existence. With this purpose, we have organized a full day event comprising of a press conference in the morning and a ribbon cutting event dedicated to sponsors and honorary patrons in the afternoon.

IMPLEMENTATION

Positioned over a picturesque area near Bucharest, the centre encompasses a 12-bed unit that will provide palliative care exclusively to children, spaces for educational-therapeutic activities, a shelter for families that find themselves in delicate situations (6 social apartments), an educational centre, a day centre that will be used for various occupational therapies, a building intended for physiotherapeutic activities, a building which will become the house of summer camps, a family therapy centre and an educational centre for the medical staff.

Cutting the ribbon and opening the centre’s doors to all children in need is a huge step for palliative care in Romania. And what better way to raise awareness than by asking the mass-media to be your speaking-tube: the word was spread to the media representatives and as the subject was one of national interest, confirmations and additional questions flooded our inbox. Since the centre is located in Adunatii Copaceni, near Bucharest, for the magic to happen we took care of transferring the journalists to the location and back and made sure they understood perfectly what is happening there.

At Copaceni, all media representatives had the opportunity to interact with Hospice’s representatives, with some of the sponsors that helped revive the Florescu Manor (Kaufland), young patients present at the centre as well as the volunteers attending them. Following the press conference and the 1-to-1 interviews, journalists were invited on a guided tour of the Florescu domain and presented with the story of the manor and its surroundings as well as with all the improvements and adjustments that were made to the place in order to transform it into what it is today: a socio-medical centre.

September 21^st, 2018 was a big day for both HOSPICE and the sphere of paediatric palliation in Romania. To honour all those who contributed in HOSPICE Copaceni – cause ambassadors, sponsors, donors and honorary patrons – HOSPICE invited them over at Copaceni to inaugurate the centre together: the ribbon was cut by Yvonne Florescu (known by her religious name Sister John The Baptist), who used to spend her childhood summers (during the late twenties – early thirties) at the manor together with brother Radu Niculae Alexandru Richard and uncle Richard Soepkez, then the CEO of the Marmorosch Blank Bank and also owner of the Copaceni estate.

EVALUATION