Hospices of Hope USFind out about our charity partners in the USA and the work they are doing fundraising for our work providing palliative care services and hospices in Romania, Serbia, Moldova and Albania About us Our work Who we are Our people Where we work Our 30th Anniversary US publications and updates Past virtual events News Publications Support us Donate Donate Appeals Fundraisers In memory Leave a gift in your will Corporate Giving The Hospice Champions Network US Local Business Heroes Fundraise Ideas Set up a fundraising page Volunteer Events Blog Donate Romania Visit HCS WebsiteVisit Hospice Emanuel Website Romania - Hospice Casa Sperantei, Hospice Emmanuel In Romania we estimate that every year more than 50% of adults and children diagnosed with cancer in Romania, will experience unrelieved pain. In 2015 just under 8% of terminally ill patients received some sort of hospice based care. Hospice Casa Sperantei cared for over a quarter of those patients. The Economist carried out a Quality of Death Index survey assessing and contrasting the “quality of death” in 80 different countries. Romania came 64th out of 80 countries overall and 26th out of 27 European countries assessed. (Neither Serbia or Moldova featured in the review). By contrast the UK ranked number 1. We work closely with Hospice Casa Sperantei and Hospice Emmanuel, Oradea to provide vital end of life care to those who need it. Jump to: Hospice Casa Sperantei Hospice Emmanuel Services at Hospice Casa Sperantei Day Centers Spiritual Advisers Education and Training Lobbying and Reform Services at Copaceni Projects in Romania Stories Hospice Casa Sperantei We set up and registered the first Romanian hospice charity, Hospice Casa Sperantei ("Home of Hope"), in 1992. Through Hospice Casa Sperantei we introduced hospice care to Romania and Hospice Casa Sperantei is now the largest organisation in Romania providing free hospice care to adults and children. Hospice Casa Sperantei has two purpose- built hospices, one in Brasov and one in Bucharest. The hospices offer in-patient units, out-patient clinics, day-centers and home care teams. As well as receiving medical care, patients are helped with social services issues and counselling is provided. Hospice Casa Sperantei has two teaching centers. The teaching center in Brasov is named after Princess Diana in recognition of her support for Casa Sperantei. Princess Diana took a great interest in our work and made the first donation to the education center. We have clinics in Fagaras and Zarnesti which are more remote rural areas of Romania. The clinics provide home care services as many patients living in these areas have very limited access to medical care. Hospice Casa Sperantei has been recognized as a Center of Excellence for the provision of hospice care. We have opened our new respite and therapy center for children. This center is called Copaceni and is situated in the beautiful countryside outside Bucharest. The land and buildings were donated to Hospice Casa Sperantei to be developed into a center to care for children with life-limiting illnesses such as muscular dystrophy and cystic fibrosis. The facility will also support the children's families. Emanuel Hospice We also support Emanuel Hospice in Oradea, northern Romania, through support with grants, funding and training. Services at Hospice Casa Sperantei Healthcare Our Brasov hospice has 13 in-patient beds and our Bucharest hospice has 23 in-patient rooms. Both have therapy rooms and a day center and are the base for our home care teams. Many patients enjoy the facilities offered in the day centers. They enjoy socializing with others and this reduces the sense of isolation often experienced by cancer sufferers. Craft and other activities are provided as therapies giving patients the chance to relax. L’Oreal provides beauty care sessions in our Bucharest hospice. Counselling Patients are offered counselling, including spiritual counselling. Social Workers Our social workers offer assistance with benefits claims and other social services issues. Lymphedema Clinic Many patients suffer from lymphedema following surgery. This is a side effect that can continue for a long time and we provide clinics that help reduce the swelling and the pain. Prostheses and Wigs We offer patients breast prostheses and wigs. These are not provided by state hospitals and make a huge difference to the self esteem of cancer sufferers. Many of these are donated by supporters in the UK. For more details see our medical supplies page. Frozen meals project A group of volunteers from the ex-pat community in Bucharest have set up a frozen meals project to support our work. The volunteers prepare meals such as lasagne, casseroles, cottage pies, lentil bolognese and chilli con carne. The meals are then collected and delivered to the Hospice and stored in a large freezer there. They are distributed to out-patients and to families of patients. They are to help give both nutritional and emotional support. Home Care Visits The majority of our care is provided by our home care teams who visit and treat patients in their homes. The teams deal with pain relief and issues such as symptom control, bed sores, dressings and general monitoring. They advise the patient’s family how to care for their loved one. In 2015 the medical teams at Hospice Casa Sperantei made 17,531 home visits. There is no state funding for this service. Home visits are rarely undertaken by GPs in Romania and many of our patients are too weak or too poor to travel to see their GPs or attend hospital appointments. As well as doctors and nurses home care visits are made by social workers, volunteers and counselors when appropriate. Children and Young People Our hospice in Brasov has 6 pediatric beds in its Bagpuss Ward and our hospice in Bucharest has 8 pediatric beds. In Bucharest child patients can have a parent or carer with them at all times as the unit includes a “companion bed” for every patient. In both centers we have therapy rooms, consultation rooms and sensory rooms. Hospice schools We have schools in both our Brasov and Bucharest hospices. These facilities help children who are patients or carers keep up with their studies. Thanks to the sponsorship of German retailers, Kaufland, our Bucharest hospice has a thriving school with 40 students aged between 5 and 17. The students are patients, their siblings and relatives of our adult patients whose schooling suffers because of the responsibilities they take on as carers. One former patient, Catia, has won a scholarship to Manchester University in the UK. Day Centers The adult day centers in Brasov and Bucharest are very popular. They give patients the chance to socialize and join in with craft and other activities. Attendance reduces social isolation felt by cancer patients. Services such as a hair and beauty service are available. When Prince Charles visited the Bucharest Hospice in 2017, he was presented with a plaque designed by some of the day care users. Children Our younger patients really benefit from the day center activities. These give them a chance to socialize with each other and hospice staff. It also gives them a chance to relax and enjoy themselves. They enjoy outings, parties, pony rides, tech and pet therapy sessions. His Royal Highness, the Prince of Wales, visited Hospice Casa Sperantei, Bucharest in March 2017 and spent some time with the children who were making traditional Romanian Easter eggs in the day center. Spiritual Advisers In Romania, Hospice Casa Sperantei, we have three spiritual advisers, Cornelia in Bucharest and Father Ieremia and Gabi in Brasov. In Serbia we have two spiritual advisers, Katarina and Jovan. Here are two examples of how counselling has helped patients in Brasov. Maria Maria is 45 years old and was admitted to the hospice in Brasov 5 months ago. She has breast cancer. When she came to the hospice she was struggling to deal with her surgery and follow up treatment. She had the additional anxiety of being a single parent. To help her she spent a week in the hospice's in-patient unit and then started attending the day-care center. In the day-care center she started talking to Father Ieremia. She says that everything changed following this. She understood that God loved her unconditionally and wanted to be her friend, rather than punish her with an illness. This helped her to overcome her depression. Although life is still a battle for her, she now sees a light amidst the darkness. Ana Ana, is also a breast cancer patient. She is 65 years old and held strong atheist views when she was first admitted into the Hospice. She felt a strong sense of injustice and was upset with everybody and everything. She did not want to hear about the existence of a loving God and was completely indifferent towards anything of a spiritual nature. On her second admission, following further surgery, the cancer had spread and she was in a lonely and desperate place. This time she sought the help of Father Ieremia, and her discussions with him helped her to find a personal faith and a prayer life. Her whole outlook on life changed, her depression left her and she suddenly started to enjoy life again, even with the cancer. She is now at peace about her future and was re-united with her grandson, who had not visited her for years. She no longer feels alone. A Personal reflection from Father Ieremia "During my 12 years as chaplain/priest for Hospice Casa Sperantei in Brasov I have met many patients who impressed me greatly, so it is quite difficult to choose one in particular. But once during my Wednesday morning "confessional visit" to the in-patient unit, my attention was caught by a particular gentleman, Ion (not his real name). He had a certain arrogance about him, combined with the sadness of a man who once had authority and was now afflicted by the threat of serious illness. He told me coldly: "I was an ex-commander of an important military structure before 1989 and we used to have a priest at the garrison - not just any kind of priest, but a priest who was a Major!" I smiled at him and he carried on. But later on, with the help of another priest, I managed to track down the "Major" priest and arranged for him to take a joint service at the hospice. After every service, we'd enjoy a tea or coffee together in the day room. This time was no different and for half an hour the two of them - the priest-Major and the Colonel-patient shared their thoughts like old soldiers; operations, medals, parachuting, disappeared colleagues etc, all with soldierly pride. The following day the patient told me that he couldn't confess to someone of a lower rank and would prefer a "civil" priest. This is how our beautiful spiritual-literary-cultural friendship started, which lasted more than a year, until God opened his fatherly arms to welcome Ion home. Every time Ion spent time at the in-patient unit in the Hospice he wanted to confess and take communion. This was despite his background. He had had an atheist education and because of the communist constraints he did not attend Church. The Holy Spirit had opened his heart. On Saturdays, when my work at Hospice finished, Ion's daughter brought him to the hospice to drink coffee and have a chat. He did so until he lost his faculties. On his last two Saturdays he asked the staff in the in-patient unit "Has the Priest come? Is he here?" and he would brighten up when I would pat him jokingly on the shoulder. In his will he asked me to arrange the funeral service. This was very difficult for me to do as I had lost a friend. May he rest in peace!" Education and Training Hospice care training is only an optional part of medical training except for oncologists working in in-patient units. Hospice Casa Sperantei works with organisations such as universities to change this and make palliative care a compulsory aspect of training. Hospice Casa Sperantei has two educational centers - the Princess Diana Study Center in Brasov and a center in the Bucharest Hospice. When fully operational there will be a pediatric educational center at the children's center, Copaceni. Hospice Casa Sperantei offers courses to a wide range of medical professionals and has trained more than 11,000 medical professionals in hospice care techniques from across Romania and other countries. Many of the professionals we train return to their practices and integrate this training into their work. This means that more terminally ill patients receive help. For example, the CEO of Hospice Emanuel trained at Brasov and then set up our partner hospice in Oradea. Although there is still a long way to go wards in 20 out of 41 counties in Romania now follow the hospice care model we introduced into Romania. Lobbying and Reform Hospice Casa Sperantei works with the national health authority to develop national hospice services. Our National Development Department is working with the authority and other organisations to integrate hospice care into standard medical training. Through lobbying we have achieved major improvements in end of life care legislation and medical standards. When we first started our work in Romania the use of opiate based pain relief was banned and one of our major achievements was to successfully lobby for its legalization. In 2018 Hospice Casa Sperantei had a major success as, following advice from Hospice Casa Spreantei, the Romanian government prescribed standard requirements for palliative care units in Romania. Copaceni – a respite and therapy center for children As well as pediatric wards in the two hospices, Hospice Casa Sperantei has a center dedicated to helping children living with a rare or life limiting condition such as muscular dystrophy or cystic fibrosis. The center will also provide support to the children’s families. The center is unique in Romania. It was opened in September 2018. Copaceni was the Florescu family’s summer estate. It was confiscated by the communist regime. When it was returned to the family they donated it to Hospice Casa Sperantei so that “young Romanians who courageously live with illness would have a better life”. Sponsors and supporters of the charity donated 1.7 million euros to allow building work to take place. The buildings at the site were in a poor state of repair when the property was donated and have undergone a detailed renovation process. Services at Copaceni The center will provides: A 12- bed respite unit Temporary emergency accommodation for families facing homelessness – a common situation for families with children living with rare or life limiting illness An educational center A therapy center which will provide therapies including family therapy, psychological and therapy through technology A day care center with occupational therapy A sensory room Accommodation for our summer trips Respite care will be offered to some 200 children a year. Two thousand outpatient and therapy sessions will be provided annually and approximately 300 children will enjoy a week’s relaxation and fun at Hospices of Hope’s summer camps. Who will benefit from Copaceni? There are more than 5,000 children in the Bucharest area alone who would benefit from the center. 8,000 family carers and 10,000 children facing the death of a parent or sibling annually. HOSPICE Casa Sperantei wants Copaceni to become a center of excellence in world pediatric palliative care as soon as possible. Projects in Romania Introducing New Technologies to help our patients In Romania we have started to introduce virtual and augmented reality techniques. Initially this technology will help our child patients but in the longer term it will be extended to adults as well. VR has been shown to reduce levels of pain and have a stimulating or calming effect on patients – depending on need. VR and AR will be the main focus for our Tech House in Copaceni but we are also using this technology in our hospices. We have introduced virtual reality into the hospice in Bucharest and our children are already benefiting from this ground breaking project. Dr Brennan Spiegel -Dr. Brennan Spiegel, MD, is an Ambassador for the project, using his expertise to support the development of hospice care in Eastern Europe. He directs the Cedars-Sinai Centre for Outcomes Research and Education (CS-CORE), a multidisciplinary team that investigates how digital health technologies — including wearable biosensors, smartphone applications, virtual reality and social media — can strengthen the patient-doctor bond, improve outcomes and save money. He has been working with patients in hospital settings using virtual reality techniques. As can be seen from these links VR can reduce anxiety and pain levels in patients which, in turn, can reduce the need for opiate based treatments. We are very grateful for his support and for the support given to us by a team at Stamford University who will provide guidance on the project in the future. Our HelpApp Thanks to funding from Bristol Myers Squibb we are developing a new App which will help our patients in Romania. Once established we hope to launch the system in Serbia as well. The App allows patients to upload their health data. That data is then monitored by our medical team who will take action as appropriate. The App also allows patients to book appointments online and, when appropriate, for some consultations to take place online. This means that patients have increased access to care and more patients can be helped. This service will also be available through the web and patients will be able to borrow equipment if needed. For more information see this demonstration: Stories Social Worker Irina The manager of one of our shops spent a morning with Hospice social worker, Irina. "I was extremely privileged to have the chance to go on visits with Irina, a social worker based in the Hospice in Brasov. She has about sixty families on her books and tries to see them all regularly. She stopped off at the local hospital, a grey dilapidated building. She met a client who is the father of five sons (one has since died), all of whom suffer from muscular dystrophy. The parents are desperately trying to care for their sons, but it is exhausting and back breaking. Irina is trying to arrange support from the Hospice for them. We then went to visit two families who live about a thirty mile drive from the town. The first family has a child living with cerebral palsy. They are poor and needed to get papers signed for requesting some financial and medical help. Irina helped them to complete the forms and then we went to the mayor’s office and then to the government office in town to get the papers validated and into the system. It will be at least three months before the family receives anything other than Irina’s support. The second family has a seven year- old son who lost his sight through cancer. His parents still have no idea whether the cancer has spread or what his prospects are. They also have eight month old twins. The husband works away from home in Italy on construction sites, to earn money and to enable him to continue building the house they are living in. Both families have little materially but were so grateful for the advice and support they are getting from the Hospice." Andrei Andrei first came to the Hospice in Brasov when he was ten years old. He suffered from muscular dystrophy which was diagnosed at quite a late stage. Andrei’s illness meant that he became progressively weaker. He resisted using a wheelchair when he could no longer walk. He had to give up state education when he was ten because he could no longer write. This was devastating to him as he was very intelligent and loved learning. Sleep was difficult for him as he had to be moved several times at night. Hospice helped Andrei in many ways. We showed him and his family how best to care for him and when things got too much Andrei received respite care at the hospice. He attended our day center on a regular basis and he really loved the activities and social interaction. Andrei joined in with everything he could and wrote a play about the hospice which many of his friends took part in. The hospice school meant that he could continue with his education. He really enjoyed the summer trips and particularly enjoyed seeing the sea for the first time. Andrei said that Hospice "has always been a huge support and helped me overcome the most difficult moments in my life. It is where I have met many people with a big heart who look after all of us patients with great love and care." Andrei made the most of every day and would get involved with everything even though his illness prevented him from taking part in many activities. Sadly Andrei lost his battle with his illness aged just 23. He is greatly missed by everyone who knew him. We have an appeal in Andrei’s memory so we can continue to help children with similar illnesses. Gabi As part of Hospice care we offer spiritual care to our patients. Like our medical care it is offered to people of all faiths and none and is free of charge. When faced with illness people often have questions relating to a sense of meaning or purpose and if asked to do so we take time to consider these issues with our patients and their families. Sometimes spiritual care can also be of a practical nature where the patient and family members receive support through acts of kindness and company. Our spiritual coordinator in Romania talks about her work with a patient called Gabi and her family. I was asked to visit Gabi, who was just 42 and who wanted spiritual counselling. She had had two colostomies, was unable to walk and was living with her parents. Her mother was 72 and was suffering from dementia and her father had special needs and also could not walk. Gabi did not want to be hospitalized so we offered her home care. When I visited her at home I was shocked to see the poor living conditions. There was dirt everywhere, unclean clothes and leftover food all over the place and an army of cockroaches enjoying the feast. The minute we arrived Gabi started crying for food. She believed that if she had plenty of food her condition would improve and she would be able to walk again. She used to be a very independent woman, an engineer with a very strong personality, and she just couldn't accept the situation that she was in. She desperately wanted to have a normal life again. Although my role is as spiritual coordinator, sometimes this can include more practical concerns and I felt the most pressing issue was to persuade Gabi to accept in-patient care. After a week she agreed to be admitted to the Hospice and she received the care that she so urgently needed. Shortly after Gabi was hospitalized we gathered a group of volunteers to go and help clean the family's flat. After 10 hours of hard work the place was clean again and we helped Gabi's father shave and gave him a haircut. A week later we decided to visit and see how Gabi's parents were doing and we were shocked to see that the place was in a total mess again. We felt that the parents also needed special care as they couldn't look after themselves but they refused to leave their home. Two weeks later Gabi was released from the Hospice but she continued to receive home care visits. Her mother was very reluctant to welcome visitors even though the medical team and the volunteers were there to help Gabi. Gabi's condition deteriorated to a level where nothing further could be done other than for us to make the end as comfortable as possible. Gabi wanted to spend her last days at home and so we did what we could to make this possible. I did my best to support Gabi's parents who were overwhelmed by the situation. We helped Gabi's father move into Gabi's room so he could say goodbye to her and be at her side during the last hours of her life. I helped Gabi's parents organize the funeral as they were in no condition to do so. I have stayed in contact with them and they are pleased to see me when I visit.