In 1990 a team of Macmillan nurse specialists ( Anne Brown, Ann Dent and Ann Nash) prepared staff for the opening of Lakhta hospice and the following year, doctors David Frampton, Robert Twycross and Andrew Hoy led a course for physicians in St Petersburg.

Other developments were taking place in Moscow, where an extended course Compassion with Competence ran from July to September 1991. Three teams of nurse tutors each taught consecutively for one month. The first team was led by Jean Roch (St Luke’s Sheffield) the second by Virginia Gumley (St Christopher’s, London) and the third by Wendy Jones (St Francis, Romford). Some nurses travelled long distances to attend. Virginia Gumley:

‘Thirty two nurses from seven different towns attended, from Kaliningrad near the Polish border, to Ormsk in Siberia. I found the nurses highly motivated, hard working and very keen to develop their skills. Many a teacher in the United Kingdom would have been delighted to have such a hard working group.’¹⁴

Despite the commitment of both students and staff, the course was disrupted by what became known as the August Coup. The Soviet Union was in its last days. Tanks were on the streets of the capital. Confusion was rife and the situation changed by the hour. For a group of nurses, dislocated from their homes and families, it was a worrying time. Wendy Jones recalls:

‘During the time that I was in charge, the ‘August Coup’ (as it has come to be called) took place. This called for different management of the whole group and alterations to the timetable if any significant learning was to take place. With the daily and nightly activities at the barricades and on the streets of Moscow, the anxiety of the group by 9am each morning was high. As an educationalist, I recognised that nothing of any value would take place until this anxiety was, at least in part, relieved. It happened that one of the interpreters was also something of a political animal and I realised I would not get much out of him until he too knew what was going on. I therefore agreed that he should go to the centre of the action each morning - but carefully! - in order to gather the most recent news. He would report to the group of students between 9 and 10 am each day and then there was some chance of getting on with the day’s modified programme.

 

It was also at this time that the British Embassy was advising British nationals to leave the country. I therefore had to give my team members the opportunity, if they wished, to follow the advice given and leave Moscow. I am happy to report that neither of them did, though there was a moment when I thought they might.’¹⁵

As interest in the hospice ideal developed, other courses were held in Ivanovo (1993), Tula, Kemerovo and Yaroslavl (all 1995). A two-week training course was organised in 1995 by the Colchester-based charity, the St Petersburg Healthcare Trust. Sponsored by the Know How Fund, the course attracted palliative care activists from cities throughout the length and breadth of Russia: Moscow, Ulyanovsk, Yaroslavl, Kemerovo and – remarkably - Vladivostock on the east coast. Project manager Sue Beven wrote as follows:

All parties, the trust, the lecturers and the delegates have recognised the importance and influence this course has created on the palliative care movement in Russia. It can be seen from the questionnaires that many areas from which these delegates have come have had no real understanding of the subject, but are now going back to their regions knowing what their objectives are and obviously have every intent of establishing good practice and influencing others to follow and improve palliative care for terminally ill patients.¹⁶

Wendy Jones visited Kemerovo in 1994 and the following year, a team of specialists returned to deliver a palliative care course in Novostroyka. One of the tutors was Dr Stephen Dyer (Willen Hospice, Milton Keynes) and so began a long-standing association with the region which came to include Maureen Gill, a nurse consultant in palliative care and other members of the Willen team. In 2003, Siberia’s first inter-regional conference in palliative care was held in Novosibirsk, supported by the Soros Foundation.
Underpinning such developments has been a gradual integration of palliative care into academic and health care systems. In St Petersburg an MD thesis submitted in 1994 by Dr Leonid Zelnitsky (Kolpino Hospice) led to the publication of a booklet by the Institute of Health Care Reform ( Pavlov Medical University, St Petersburg) that recommended minimum standards for the establishment of new hospices. In Perm, two handbooks have been published giving guidance to volunteers.¹⁷ A special partnership has been established in Ulyanovsk between the Regional Health Committee, the Ulyanovsk branch of the Moscow State University and local hospices. This collaboration has resulted in numerous developments including a regional strategy for cancer and palliative care services, inter-regional symposia and a 3-year training programme leading to a diploma in palliative care.¹⁸

An academic collaboration between the St Petersburg State Medical Academy, Anglia Polytechnic University (UK) and St Petersburg Health Care Trust aims to provide a fully accredited postgraduate course in palliative care. By 'training the trainers' and incorporating a sliding scale of dependency, the course will be wholly established and accredited in Russia within 3 years. The first module took place in October 2003.

In 2000 the Open Society Institute, New York, awarded Professor Andrei Novik - President of the Multinational Centre of Quality of Life Research - a grant of US$19,020 to institute a national palliative care education programme. As a result, collaborative links have been established with Professor Cleeland at the MD Anderson Cancer Center (University of Texas, USA), and with other associates at institutions such as the International Society for Quality of Life Research, Baltimore (USA), the University of British Columbia (Canada), and the University of Trieste (Italy).

Working from his previous base at the National Cancer Research and Treatment Centre (NCRTC) in St Petersburg, Andrei Novik concluded that the prevalence and severity of cancer was greater among Russian patients than among patients in other European countries – due largely to Russia’s sparse health resources. He noted too that opioid consumption was significantly lower than in other European countries and that the WHO analgesic ladder was not the standard approach to pain management in Russia. Consequently, one of the priorities of cancer care in Russia has become the provision of palliative and supportive care in accordance with international standards. He writes:

Palliative care of cancer patients starts from the early stages of the disease and intensifies with disease progression. It is important to stress that psychological, spiritual, and social support of family members from the initial stages of the disease and after the patient’s death is an inalienable paradigm component.¹⁹

To improve the overall quality of palliative and supportive care, the NCRTC has introduced a long-term programme which includes the following milestones:

• Education programmes for specialists involved in palliative and supportive care
• Introduction of pain assessment
• Introduction of symptom assessment
• Implementation of quality of life assessment
• Training for patients and relatives to increase coping skills
• Public awareness of end-of-life care
• Support of non-governmental organisations in Russia involved in palliative and supportive care¹⁹
  

Alongside these developments, a number of initiatives have originated from the Moscow Centre for Palliative Care, led by Professor Georgy Novikov. In 1999, a palliative care training course was held in Moscow and 4 months later, a postgraduate palliative care programme was developed for medical staff: 172 hours if based at the Medical Academy, 2 weeks if delivered off-site. The course includes: the organisation and methods of palliative care; diagnosis and treatment of cancer pain; symptom control; and the psychosocial and spiritual dimensions of palliative care.

As the course was devised, advice was sought from the international community. To date, around 800 people have been trained. At the end of the course, students receive a certificate that acknowledges the training and awards government recognition. Such accreditation is in accordance with the guidelines on re-training in specialist subjects. This serves to legalise and professionalize the training and lifts it out of the realms of the interested enthusiast.