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From trainee Oncologist to Professor of Palliative Care – a profile of Dr Daniela Mosoiu by Graham Perolls (Hospices of Hope founder)

In 1994, during the early days of pioneering hospice care in Brasov, I heard about an Orthodox priest called Nicolae, who had a vision to provide spiritual care within the hospitals in Brasov. Each time he set up a little portable “altar” in the Neurology Hospital, so I was told, he found it had been removed. But he didn’t give up, as he knew that the acutely sick and anxious patients in this overcrowded and depressing hospital, desperately needed someone they could pour their heart out to and find comfort in the traditions of their religion. I was intrigued by this story and one morning, I managed to track him down. Nicolae (or Nicu as he is known) immediately struck me as a deeply spiritual, open-hearted, caring and humble man. I told him about starting the hospice in Brasov and invited him to a conference we were about to hold in the city. He replied by saying that he would come but also try to bring along his wife, Daniela, who at the time was training as an oncologist and “would be interested to hear about palliative care”. I was so thankful that he was true to his word, for as soon as I met Daniela, I knew immediately that she was someone special.

The rest is history… In 1995, Daniela agreed to take a job as a doctor in the fledgling hospice home-care team in Brasov. At that stage it comprised of one other doctor, 4 Romanian nurses, a nurse from the UK, and an administrator. Very soon, she was working flat out, visiting very sick cancer patients at home from morning to evening and learning fast about palliative care. Her leadership abilities were clear from the very beginning and she was soon appointed as Hospice Casa Sperantei’s medical director. Daniela is one of those people who always “lights up the room”! Her warm smile, her boundless energy, her positive attitude and determination marked her out from the start as someone who could open doors when others couldn’t. In those early days of the hospice movement in Romania, when frequent visits had to be made to the Ministry of Health and various other authorities, I was always struck by how people took notice when Daniela spoke. Whether it was persuading the medical authorities to allow terminally ill patients to receive morphine for their pain, pressing for the speciality of palliative care to be recognised in the Romanian medical system or ensuring that standards were written and upheld for patients needing care at the end of life, Daniela was crucial to achieving a positive outcome. In those days, with hospice care being a completely new concept, there was a huge need to raise awareness of the needs of the terminally ill and educate health care professionals in all aspects of palliative care.

In 1998, we opened the Princess Diana Palliative Medicine Training Centre in Brasov and again, Daniela took a lead in heading up the educational programmes. Also around this time, she approached me about the need for establishing the first in-patient unit. I remember saying to her that if she found me some land, I would raise the money in the UK to build it!

In 2002, the dream became a reality and the first in-patient hospice opened its doors to patients. This gave palliative care much higher visibility and people came from far and wide to visit the hospice. Since that time, thousands of doctors and nurses from across Romania, and from surrounding countries have attended courses at the Education Centre and received practical hands-on training at the hospice. By this time, Daniela had attended various national and international conferences and had become a sought after speaker and valued expert in the field of palliative care. She was asked to join various committees including the European Association of Palliative Care and the Worldwide Hospice and Palliative Care Alliance. She has also contributed numerous articles to medical books and journals. I particularly like the foreword to a chapter she wrote in a book entitled “Compassion – the essence of Palliative and End of life Care”, in which the author says: “In this chapter, Daniela talks about the place of the heart in the practice of compassion. In the case that she shares, the simplicity of reaching out in a spirit of tenderness and love frames the compassionate response to a child seeking comfort. The idea of a simple act of kindness as a precursor to the deeper compassionate response is evoked in the care shown and learning shared across parts of Eastern Europe.”

In more recent years, Daniela has spearheaded the drive to make palliative care available in the whole of Romania. She is currently involved in a project funded by the EU which aims to design a programme to do just that. She has also been appointed Associate Professor of the Medical Faculty of the University of Brasov and President of the Palliative Care Advisory Commission of the Romanian Ministry of Health. The fact that so many more patients receive palliative care in Romania today is in no small measure due to the tireless efforts of Daniela and her team. And all across Romania and South East Europe, thousands of other health care professionals have been inspired by her example and teaching. Personally, I have loved working with Daniela over the past 26 years and I am still very thankful to God that my curiosity about the priest who had a vision to bring spiritual care to hospital patients in Brasov all those years back led me to a lady who has literally changed the face of dying in Romania.

Graham Perolls, July 2021

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CEO, Anna Perolls, visits our country partners in Greece

In March 2023 our CEO, Anna, made a visit to both partner hospices in Greece; Merimna and Nosilia. Here, she shares her experience.

Greece

“Although surprising to some, there is a huge need for palliative care support in Greece. 3,300 children and 135,000 adults require palliative care each year and there is currently no support or funding provided by the state. There are only 3 specialist palliative care teams in Greece, two of those are our partners. On speaking with hospice staff and patients during my visit, it was clear that even the primary care system in the country is very weak, and worsening due to lack of trained personnel. It was wonderful to be able to meet the teams in person at both organisations after many video calls and discussions over the last year. They are so committed to their work and to making a difference in Greece, it was inspiring to hear their stories and to take part in home visits with members of the multi-disciplinary team. One of the families we visited have a 17-month-old son, D. D has a severe condition as well as epilepsy and cannot move or speak. Unfortunately, his diagnosis was not picked up at birth. He was diagnosed at 7 months old after having his first fit, and now requires feeding tubes and consistent care and support.

His parents had tried taking him to their local doctor but were sadly turned away and advised to go to the hospital instead, but there are no specialist doctors at the hospital that could help with D’s condition. After coming across Merimna (the only children’s care organisation) D and his family are now receiving regular visits from the team to help them to understand his diagnosis, manage his symptoms, and to give him a better quality of life for the remaining time he is with them. It was moving to see their gratitude towards the Merimna team and for me, it really demonstrated the impact that could be made for families in Greece with the expansion of services and awareness of the need for palliative care. Our aim is to enable Merimna to employ another full-time nurse, a full-time social worker and to provide a symposium on palliative care that will help to educate more Greek health care professionals. In addition, we are working with Nosilia to fund another home-care team which will enable them to reach more terminally ill adults in the Athens area.”

News

The latest news from our Romanian hospice partners

Our country partners Hospice Casa Sperantei have had a busy start to the year. In January, they won ‘NGO Initiative of the Year’ at the British Romanian Chamber of Commerce Awards Gala in Bucharest. In February, they celebrated their belated 30th anniversary with a special Gala event with our founder; Graham Perolls, and CEO; Anna Perolls, in attendance.

Throughout this 30 year period, more than 45,000 patients and more than 100,000 relatives have benefited from palliative care in Romania, and this was made possible with the help of our supporters.

At the end of the event, CEO of Hospice Casa Sperantei, Mirela Nemtanu, shared the following message:

“It is a great challenge to have to summarise the last 30 years in moments, stories, and highlighting key people. At hospice, every day is one that changes statistics and, I hope also, perceptions of palliative care.

I think that a key moment in the history of hospice is when we were awarded the title of Hospital of the Year in Romania obtained at the end of last year within the Romanian Healthcare Awards. I believe that it is a key moment because it substantiates our status – a hospital that was built and that operates from donations – can be at the top, it can be a benchmark.

The last 30 years are about sponsors, donors, volunteers, ambassadors, media that shared our messages and stories, about our team, about patients who fight, about patients holding hands in their last moments, about belongings that are not left alone and abandoned after losing loved ones. And this moment is an opportunity for me to say a big thank you to everyone who connected to the hospice story ”

The Emanuel Hospice team were recently awarded a ‘Diploma of Excellence’ in the category “Medical Team of the Year” for excellence in providing palliative care services at home. Emanuel Hospice CEO Marinela shares; “This award honors us and, at the same time, motivates us to continue Our mission of providing comfort, dignity and an optimal quality of life to the oncological patients found in advanced stage of illness and to their families.”

Emanuel Hospice were also recently able to open an in-patient unit for adults with advanced cancer and children with life limiting conditions. Patients will benefit from medical consultations, a treatment plan and psychosocial support. Services are also available for the family members of the patients, so they can receive counselling and psycho-emotional assistance as they process their loved ones diagnosis.

We are supporting Emanuel Hospice in funding and recruiting a full time fundraiser, as well as with funding to allow them to retain their clinical team of 6.

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Hospices of Hope is a UK and US based charity which supports and promotes the development of hospice care in South and East Europe.

It was founded by Graham Perolls in 1991. From very small beginnings, the charity has developed into the largest hospice/palliative care network in South and East Europe.

Graham’s journey, and that of Hospices of Hope, started with a visit to a cancer ward in Brasov, Romania. That visit was the first step in developing an organisation that has helped thousands of patients and their family members.

Graham’s story – the start of the Journey

“In 1980 my father died from cancer at St Christopher’s Hospice in London. The amazing care he received there inspired me to set up the Ellenor Hospice charity in my home town of Dartford.

Five years previously in 1975, I had visited Romania as a tourist and a chance encounter with a young Romanian couple in the medieval city of Brasov led to a lasting friendship and a deep interest in the country and its people.

I visited Romania several times during the communist period and again a few days after the “revolution” in the closing days of 1989.”

A seed was sown

“ It made me think that perhaps I could use my experience setting up the Ellenor Hospice to do something to help.”

At the time there were heart-breaking images on TV and in the press of the abandoned children in state orphanages and the horrendous conditions in other state institutions. But nothing could have prepared me for the reality – seeing the situation for myself was simply shocking.

I asked my friends to take me to the cancer hospital in Brasov. The consultant in charge took me to see a young man who was dying in terrible pain.

Seeing him planted a seed in my mind. It made me think that perhaps I could use my experience setting up the Ellenor Hospice to do something to help.

I discovered that care for terminally ill patients in Romania was non-existent. They were simply sent home to die without pain relief or emotional, spiritual or psychological support. Their families had to cope as best they could and this led to unimaginable suffering.

In 1991, the trustees of the Ellenor Hospice agreed to me raising funds for Romania. One of the Ellenor nurses offered to go out and live in Brasov for two years to train our first Romanian nurse.

We launched the first Romanian hospice charity for adults and children

Things moved quickly from then on. In 1992, we organised a conference in Brasov to raise awareness of the need for good care at the end of life. This created huge interest.

We then registered the first Romanian hospice charity, called Hospice Casa Sperantei (Home of Hope), and employed the first nurse and part-time doctor.

This small team, supplemented by UK volunteers, visited patients in their own homes in Brasov. Patients and families were astonished that someone was there to help them and was doing so free of charge.

Over time, the number of patients grew and more medical staff were employed, including a paediatrician and children’s nurse. This meant that, for the first time, families with terminally ill children had some sort of support.

Hospice Casa Sperantei has been our main Romanian country partner from the start but in 2011 we added Hospice Emanuel, Oradea, as a second Romanian partner in order to support an organisation that has coverage in the northern part of the country. Hospice Emanuel provides home care services for adults and children and are planning to build a day centre and in-patient unit.

Over time, the number of patients grew and more medical staff were employed, including a paediatrician and children’s nurse.

Breakthroughs

The hospice has beds for both adults and children and is recognised as a Centre of Excellence. The hospice includes our Bagpuss Children’s Wing.

For the first 5 years we focussed on caring for patients in their own homes.

Education and Training

We always recognised the importance of education and training. By training medical professionals in end of life care we knew we could improve the quality of life for so many more people.

To achieve this we opened the Princess Diana Education Centre in Brasov in 1997. The Centre was named after the Princess in recognition of her support for our work. It is a residential training facility for medical professionals and its training courses are internationally recognised. Since it was opened with our support our partner has trained thousands of medical professionals from more than 23 different countries.

The first in-patient teaching hospice in Romania

1998 brought another breakthrough. Brasov Council donated a plot of land for the first in-patient teaching hospice in Romania and £1 million was raised in the UK to build it. The hospice has beds for both adults and children and is recognised as a Centre of Excellence. The hospice includes our Bagpuss Children’s Wing.

USA

As a result of increasing support from donors in the United States, we established a fundraising office in New York in 2000.

Support extended to Bucharest and neighbouring countries

The report’s researchers from the University of Sheffield identified Hospice Casa Sperantei as a “Palliative Care Beacon” in South-Eastern Europe.

In 2001, the Open Society Institute in New York commissioned a research project which looked into the provision of hospice care in Eastern Europe and Central Asia. The report’s researchers from the University of Sheffield identified Hospice Casa Sperantei as a “Palliative Care Beacon” in South-Eastern Europe and recommended that it should “develop its regional role in the Balkans”.

This recommendation led to the next stage of the journey – developing hospice services across Romania (particularly in Bucharest the capital) and using our expertise to develop and promote hospice services in other countries in the region by creating an international network.

To achieve this, we launched the “Beacon Appeal” in 2003, which raised more than £1.25 million.

As a result of this appeal we:

Opened the Nicholas Edeleanu Training and Resource Institute in Bucharest

■ Funded a home care service in Bucharest

Pioneered two mobile services based in Fagaras and Zarnesti which brought much needed care to patients in two very poor rural areas of Romania

Established a partnership in 2006 with a new hospice charity in Serbia – BELhospice

Started working in the Republic of Moldova in 2008

First hospice in Bucharest

The centre is unique in Romania and provides services for children and families affected by rare or life-limiting illness.

Following a 6 year funding campaign, a long-standing dream was realised with the opening of the first in-patient teaching hospice in Bucharest. The Duchess of Norfolk and HIRH Dominic Habsburg cut the ribbon to ‘officially’ open the hospice on September 19th 2014.

In 2017, His Royal Highness, King Charles III, visited the Bucharest Hospice as part of Hospice Casa Sperantei’s 25th anniversary celebrations.

Supporting a new service for childeren

In 2018 Hospice Casa Sperantei officially opened Adunatii Copaceni, a socio-medical centre located in the countryside just 20km from Bucharest. The centre is unique in Romania and provides services for children and families affected by rare or life-limiting illness such as cystic fibrosis and muscular dystrophy. The day care and therapy units began operating in 2019 and in 2021, we added a residential respite service for children and family members.

Our annual series of summer trips in Romania began as far back 2002 to provide respite and fun for some of our child patients and children who have suffered bereavement or have a family member cared for by the hospice. Most of the camps are now held at Adunatii Copaceni.

Medical Supplies

We started shipping donated medical supplies to Romania in the nineties and now also send these supplies to Moldova and Albania.

The Hospices of Hope Network – extending into new countries

Serbia has the highest cancer mortality rate in Europe but limited palliative care services.

Following the success of the Beacon Appeal we extended our work into other countries and established the Hospices of Hope Network.

Serbia

BELhospice in Belgrade, Serbia became our country partner in 2006.

Serbia has the highest cancer mortality rate in Europe but Belhospice, is still the only NGO in Serbia offering free of charge specialist palliative care.

BELhospice offers home-care services in Belgrade. In 2018 the first hospice care centre was opened and a palliative day-care service was added – the first in the country.

Our long term aim is to facilitate the opening of an in-patient unit in Belgrade.

The Hospices of Hope Network

In 2018, we were invited to support the fledgling hospice movement in Albania.

Moldova

Moldova is by far the poorest country in Europe. Many patients have to cope with dreadful living conditions as well as dealing with their illness.

We began in 2008 by supporting a home-care service in the capital, Chisinau. In 2017 we started supporting a number of small hospice organisations in more rural locations to ensure services reach people outside the capital, where there is the most poverty. Our intervention has greatly increased the sustainability of these organisations. We are planning to open a palliative day-care centre in Chisinau.

Albania

In 2018, we were invited to support the fledgling hospice movement in Albania. We started by working with an existing hospice organisation, Ryder Albania, in the capital Tirana and second city Durres and added the ABC foundation in Tirana and Mary Potter Hospice in Korce.

The team at the Regional Palliative Care Centre Ivano-Frankivsk in Ukraine with an ambulance Hospices of Hope helped to fund.

Greece

Palliative care is not yet officially recognised in Greece. We are starting to support two small teams in Athens. Merimna (which in Greek means ‘Care’) – which provides paediatric palliative care home services to children and adolescents who live a life-threatening illness and Nosilia, which provides palliative care for adults. Both these services are based in Athens and are provided free of charge. They rely solely on donations from individuals, companies and foundations, as there is no governmental reimbursement or financial support of any kind. Unfortunately, due to the effects of the COVID-19 pandemic, financial support has drastically decreased.

Ukraine

Following the start of the Russia/Ukraine war in spring 2022, we began supporting Ukrainian refugees through our network in Romania and Moldova. Hospice Casa Sperantei at the children’s centre in Adunatii Copaceni provided temporary accommodation, medical care and has admitted those in need of palliative care to the Bucharest hospice.

We have since made a formal partnership with the Regional Palliative Care Centre Ivano-Frankivsk in Western Ukraine. Some of the senior staff were trained at Hospice Casa Sperantei Brasov prior to the war, so we already had a good relationship with them.

We aim to support them through ongoing funding and development. Once the conflict is resolved, we know the aftermath will be vast and support and assistance will be crucial.

Inspired to carry on

Graham with a young patient in the Bucharest Hospice

Country partners have facilitated care for more than 70,000 patients and palliative care training for thousands of health care professionals from all over Central and Eastern Europe. For me personally it has been a very rewarding journey

When I first visited Romania in the 1970’s I did not imagine that this region would become my second home! There have been many obstacles to overcome along the way, but with God’s help and the generosity of so many amazing supporters, so much progress has been achieved. There are now 120 organisations in Romania providing end of life care and we are helping the government to devise a national strategy.

I wish I could say that there is now no need for the involvement of Hospices of Hope. But sadly, despite the progress made, there are still huge gaps in the provision of services across the region.

In Romania, Hospice Casa Sperantei is still the only charity which provides the complete range of hospice services for adults and children (in-patient, out-patient, day care and home care). And still only one in eleven terminally ill patients in Romania has access to specialist palliative care. In the other countries within the Hospices of Hope Network the situation is much worse.

Over the years, we have been blessed with so many exceptional leaders and staff members in the countries we work in, but it is always the patients and their amazing courage in the face of great adversity that gives us all the inspiration to continue the journey.”

Graham Perolls, CMG, OBE

In Romania, Hospice Casa Sperantei is still the only charity which provides the complete range of hospice services for adults and children (in-patient, out-patient, day care and home care).

Your donation can make a real difference

Your money goes much further in the countries where we work.

£20

could cover a week’s worth of meals for a patient in a day centre.

£30

could cover a home care visit to a patient.

£100

could pay for one child’s medication for two months.

£500

could cover the cost of a nurse for a week.

£2,000

could cover a doctor’s salary for a month.

£10,000

Could cover a physiotherapist’s salary for a year.

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Our Ukraine country partner receives an ambulance!

We were delighted to see the photos of an ambulance arriving to our country partners in Ivano-Frankivsk in Western Ukraine.

The ambulance was part-funded due to the generosity of our supporters through our Help for Ukraine appeal and The Blue Heron Foundation. The Blue Heron Foundation is a non-profit charitable organisation that aims to transform the lives of orphaned and abandoned youths in Romania and Moldova. Since the start of the crisis in Ukraine, it has been working to raise funds for those affected.

The ambulance is one of many provisions we have been able to make since the start of the Ukrainian crisis, thanks to donations from our supporters. Our teams in Moldova and Romania have been working hard to provide vital services, including finding temporary accommodation, delivering donations, and providing medical services at the border. We are so proud of our team’s work for Ukraine, on top of their missions in Romania and Moldova.

Donate to support the provision of hospice care in Ukraine

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