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The Story So far

By Graham Perolls OBE, Founder & Executive Director

The story began with my first visit to Romania as a tourist in 1975. A chance encounter with a young Romanian couple in the medieval City of Brasov led to a lasting friendship and a deep interest in Romania and its people. I returned several times throughout the seventies, and on these visits began to notice a progressive decline in people’s living standards due to the absurd policies of the ruthless dictator, Nicolae Ceaucescu.

Then for some years I was unable to visit Romania, due to family and work commitments. In 1980, my father, Norman, died from cancer at St Christopher’s Hospice, and the care he received during his illness inspired me to set up a hospice charity, the Ellenor Foundation, in my home town of Dartford, Kent. Consequently I became very involved in the hospice movement.
 
Despite life taking its course, I had not forgotten my time in Romania. In 1989, I finally had the opportunity to revisit the friends I had made there years before. I took my family on a New Year’s holiday, and was horrified by what I saw. Ceaucescu’s regime had taken its toll, homes were without electricity, people were queuing for bread in the shops at 4am, and industrial protests in Brasov had been brutally suppressed.
 
Unfortunately there was little I could do given that Ceaucescu was still in power. Then, in December 1989, the people rose up and overthrew the regime. At last, people could start rebuilding their lives. However, after years in the grip of communism, the Romanians found themselves in a desperate situation. Their infrastructure was in ruins, with scores of dilapidated institutions and abandoned children left in unimaginable conditions.
 
I returned to Romania immediately after the uprising and on seeing at first hand the appalling conditions in the cancer hospital and the local orphanage, I knew that I must do something to help. After a few months, I felt that I could possibly use my experience in setting up a hospice in the UK, to pioneer hospice care in Romania. The trustees of the Ellenor Foundation allowed me to set up a “Romanian Appeal” and this was the forerunner of what later evolved into the charity we are today, ‘Hospices of Hope’.
 
The funds raised through the Romanian Appeal allowed me to do some research and establish contacts with medical professionals in Romania. At that stage, hospice care in Romania was non-existent. No one I spoke to had been given formal training in the care of the terminally ill. With the support of the Brasov Health Authority, we brought a Romanian doctor, Dr Constantin Voinicu, to the UK to be trained in palliative care for 3 months.
 
From that point on, things moved quickly. In 1992 we organised a conference in Brasov to raise awareness of hospice care, which was hugely successful. People from all fields were united in their newfound interest in the hospice movement. Following the conference, Casa Sperantei (or ‘home of hope’ in Romanian) was founded. Dr Voincu became the first medical director, and was soon joined by Sylvia Jarrett, a home-care sister from the Ellenor Foundation, who started training the first Romanian nurse, Gabi Baila.
 
Over time this small team, supplemented by voluntary medical staff, grew. The home care team also visited local hospitals to assist in the care of terminally ill patients and educate existing hospital staff. In 1996, a paediatrician and children’s nurse joined the team, which meant that for the first time families with terminally ill children had some form of support.
 
In order to be able to continue the hospice services, we needed to ensure that we had an adequate number of staff trained in palliative care. The Princess Diana Hospice Education Centre was opened in 1997, named after Princess Diana in recognition of her support for ‘Casa Sperantei’. The centre has since trained over 4,000 doctors and nurses in all aspects of hospice care. 
 
Then, in 1998 came another breakthrough. The Brasov Health Authority donated a plot of land for us to build an in-patient unit. The first in-patient teaching hospice in the country was opened in 2002 with a capacity of 13 adult beds and 7 beds in the children’s ward known as the “Bagpuss Wing.” The building also houses an out-patient clinic and day centres for adults and children, in which patients can take part in therapeutic activities, receive medical or nursing treatment and socialise together. There is even a school for severely disabled and sick children in the hospice basement.
 
Since that time, the hospice work within Romania has continued to grow and evolve.In 2003 a report from the Open Society Institute identified Hospice Casa Sperantei, Brasov as a “Palliative Care Beacon” in Central and Eastern Europe and recommended that it should “further develop its regional role in the Balkans”. 2003 saw the launch of the ‘Beacon Project’. This aimed to make hospice care available to 5000 more patients in Romania and the surrounding countries and establish Casa Sperantei as a Centre of Excellence for the region. To assist with this vision, a new hospice care resource centre, the Nicholas Edeleanu Centre, was inaugurated in November 2004 in Bucharest, and Hospices of Hope has also established partnerships in the Romanian Cities of Bacau, Oradea and Cluj.
 
Hospices of Hope has now become a truly international organisation, having extended its hospice care programmes through the beacon project into the countries surrounding Romania. We are now supporting Dr Natasa Milicevic and her team working for ‘Belhospice’, the first hospice charity in Serbia, who are currently developing homecare and hospital based services and providing hospice care education to Serbian medical professionals. Hospice Casa Sperantei has also trained teams from Moldova, Albania, Bulgaria, Macedonia and some of the former Russian republics.
 
For me personally, it has been a very rewarding journey. I didn’t imagine that when I first visited Romania over 30 years ago, it would one day become my second home! This work has given me so many wonderful friends (as well as many frustrations!) It is amazing to see what has been achieved over the years thanks to a passionate and dedicated team, and our many loyal supporters. There is so much to thank God for. Millions of pounds have been raised over the years from trusts, foundations, the generosity of individuals, schools, churches, service clubs, events and our chain of charity shops. As well as our small UK fund-raising base in Otford, we now have a small office in Edinburgh, a regional representative in the South West of England and a sister charity in New York.
 
However, it is always the patients in Romania who should have the last word. It is their faith in adversity, their courage in hardship and their enormous gratitude to all who help them, that gives us the inspiration to carry on this work. We pray that many more patients in Romania and surrounding countries will receive the care they so desperately need in the coming years. 

  

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