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Patrons: Their Excellencies The Lithuanian Ambassador to the United Kingdom
and The British Ambassador to Lithuania
Trustees: Mida Jolanta Babilienė, Kenneth Kastytis Baublys, Wendy Ann Howe,
Thomas Townley Macan, Beata Nicholson, Michael John Peart
Bank Account: Lloyds TSB: Account name: The Tiltas Trust Sort Code: 30-99-98 Account No. 2692187
Registered Charity No. 1118912
Web-site: www.british-lithuaniansociety.org
Please click here to download a Gift Aid Declaration form for The Tiltas Trust.
Newsletter No. 4 November 2009
From the Trust Desk
• The first thing you might notice from the headings above is that we have a new Trustee. Beata Nicholson, a Lithuanian journalist based in the UK, joined us earlier in the year to represent the interests of the Lithuanian Association in the United Kingdom (LAUK). A note giving Beata’s background is included below. LAUK approached TTT last year to say that, as an Association representing the interests of Lithuanians living in the UK, they would like to extend their activities which fall under the charitable umbrella in a tax efficient way. Talks between the bodies indicated a wide convergence of interests and it seemed sensible to find a formal way of working that used the knowledge and skills of both sides, as well as maximising the opportunities presented by TTT’s charitable status. The result was an agreement signed by both Chairmen on 16 February 2009, Lithuanian Independence Day in the year of the Millennial Anniversary of Lithuania. Our Trustees are delighted that we have been able to expand our interests in this way. A further note below explains more of the work of LAUK.
• In our last Newsletter, we looked forward to developing our major piece of work, the Cancer Support and Palliative Care Project (CSPC). There has been great advance in the cancer support element as well as some progress with palliative care. What we did decide, was to put on hold for a while the Cancer Specific Expert Patient Programme being planned by Madeleine Mulgrew of Cancer Choices and Trustee Wendy Howe. This was to allow time for the evaluation of this Macmillan programme to be completed before introducing it to Lithuania. We still believe that it has much to offer to patients in Lithuania but we want to be clear about the results of the evaluation before proceeding. On palliative care, we introduced the work of Marie Curie Cancer Care at a Study Day held in Vilnius in March – more about the day below. Nicky Agelopoulos, National Programme Director of Marie Curie, spoke to an audience of over 200, explaining the ethos of the organisation and how palliative care is managed in the UK. Again, we felt that the time was not quite right for further initiatives in this sector, which is much more professionally based than the cancer support sector, and so we have concentrated on cancer support this year.
• The value of our contacts with Macmillan Cancer Support has been demonstrated time after time. Jeff Faulkner, who was profiled in our last Newsletter, has devoted a lot of his time to the project, in between moving house, and all in his first year of retirement. We are enormously in his debt. Readers will see from the article below the tremendous progress being made. We feel that we might be on the verge of a significant breakthrough in developing cancer support in Lithuania.
• In all of this work, we have been guided and encouraged by the Franciscan Brothers of the St Francis Cancer Support Centre at Kretinga, together with their close collaborators David Holliday and his daughter Liudovika Pakalkaite. Their plans for the new Cancer Centre at Klaipeda are moving ahead with fund-raising and awareness-raising. Their second annual Fun Run at the end of May, attended by three TTT Trustees, had thousands of participants running various distances of up to 10kms, including the Lithuanian Foreign Minister (formerly Ambassador in London) Vygaudas Usackas , who had flown back from Vietnam to take part. The Franciscans sold cardboard bricks as a symbol of contributing to the new centre and many companies sponsored concerts and other elements of a real fun day. The event got national press coverage and thus raised the profile of the project. TTT Chairman Michael Peart, and Macmillan CEO, Ciaran Devane, have both accepted invitations to become Patrons of the St Francis project.
• By the year’s end, there will have been a massive transfer of know-how from the foremost practitioners of cancer support in the UK to the groups in Lithuania that have ambitions to provide something similar for the thousands of patients who currently have little in the way of information and support. The generous support of BLS Members and other donors has contributed substantially to this work.
• Another project that was led by Tom Macan made a good impact. TTT identified in 2007 “arts-in-health” as an area in which the UK had world-class expertise but was little understood in Lithuania. We identified a potential partner who was planning a conference and workshop on this subject in Vilnius in mid-2009, arranged for her to meet key UK experts in late 2008, and helped her to “make the project fly”. The conference overcame some substantial hurdles, took place, and achieved an attendance of almost 200. The workshop, held in the former SS Peter and Paul monastery in Vilnius, brought together two dozen young artists who produced some wonderful artwork which now hangs in the Children’s Hospital (we hope to arrange for BLS members to be able to see photographs sometime in 2010). Linked to the conference was a Seimas Committee session on arts-in-health at which two of the UK conference speakers gave evidence. This has led to the formation of an official committee (with NGO involvement) which has put the subject on the health-policy agenda. One can hope that conference and workshop participants will help push forward the arts-in-health concept more widely. The cost to TTT has been modest: our role has largely been in contact-making and supporting. We part-funded a young photographer, Ieva Kruopytė, to record the event and her account may be found later in this newsletter The (unremunerated) commitment from our UK partners has been outstanding.
Profile of new TTT Trustee
Beata Nicholson
Beata is an experienced journalist, TV presenter and an active member of Lithuanian community in UK. A member in Lithuanian Association UK since 2004 and a member of British Lithuanian Society since 2006. She is a regular public speaker and cake baker. Beata studied at the Institute of Journalism at Vilnius University and was awarded an MBA in Public Relations in 2003.
The Lithuanian Association in the UK (LAUK)
The Lithuanian Association in Great Britain (Didžiosios Britanijos Lietuvių Sąjunga, DBLS), as it then was, was founded in 1947 by Lithuanians coming to Britain from post-war Displaced Persons’ (DP) camps in Western Europe. Its constitution declared that it was a democratic, non-party political organisation encompassing all Lithuanians in Britain. Its prime objects were to support Lithuanian youth activities, to develop social and cultural activities, and to help its members. Another important activity was the lobbying of the British government and international organisations in support of Lithuania’s independence from the USSR.
In 1951, at the instigation of the Association’s Central Committee, Lithuanian House Ltd was established to purchase a property in London which was to be the organisation’s headquarters. In 1953 the Company also purchased Headley Park in Hampshire, originally as a Lithuanian retirement home but latterly operating as a country hotel open to all. The Association began as an unincorporated body, but with the acquisition of two valuable properties it was felt prudent to incorporate it as a Company Limited by Guarantee in 1980. It was renamed the Lithuanian Association in the United Kingdom (LAUK) some two years ago, when a sizeable Lithuanian community settled in Northern Ireland.
The organisation consists of Members belonging to Branches which report to a Central Committee. There is also an Advisory Council and an Audit Committee. The current Chair of the Association (elected for a three-year term by the AGM) is Živilė Ilgūnaitė.
ART TERRITORY By Ieva Kruopytė
The ‘Vilnius live – European capital of culture’ event ‘Art territory’ was devoted to an Art in Health project for the first time in Lithuania. This highly successful exercise was inspired by a long-running British project, the results of which are based on the interrelationship between art and health.
A group of artists from 20 countries gathered and worked in studios for a whole month. Having become acquainted and unified by a single goal, the artists began their work. Wonderful creations were born in a pleasant atmosphere. The artists worked in the Church of St Peter and St Paul, formerly part of a monastery. A friendly chaos prevailed in the workplace, the light interior of the building lending itself to a scale of colours which melded with the painters’ canvases. Enthusiasm overflowed, the people worked with pleasure until sundown. Unity of purpose made everyone happy. A wonderful playfulness is noticeable in the work; the colours convey their interrelated mood. While creating for children, they incorporated their own childhood into the paintings. Artists from 20 different countries combined their thoughts and as a result produced minor miracles to help cheer sick children. These young people were aided in achieving such results by attending lectures during which project issues were discussed, and by sharing experience from other countries running already successful projects. Their paintings will decorate the walls of Vilnius Childrens’ Hospital. The intent is to produce a warm and cosy atmosphere for the sick children, thus encouraging swifter recovery.
A month later, on 15th July, the pictures were shown to the public in the Childrens’ Hospital courtyard. On a warm, sunny summer’s day, the lined up works cheered passersby and hospital staff. During this happy and uplifting occasion all the artists and their work were presented, small souvenirs were distributed, and the idea behind the event explained. The doctors did not stint their praise, murmuring among themselves to decide which picture should grace which wall. Everyone’s mood showed that the project really succeeded, and that it was not be the last but only the first step on a long road. Finally, the smiles on the artists’ faces betrayed their pleasure with the success of the exercise and, equally, with their new found friendships. The whole team appeared uplifted and unified.
A catalogue of the work was published in September.
Cancer Support and Palliative Care Project (CSPC)
TTT supporters will know that the Trustees have adopted a progressive exploration of the CSPC scene in Lithuania and a gradual introduction of British philosophy and practice. In our last Newsletter we left the story just prior to the TTT meeting with the Association of Lithuanian Doctors and Dentists in the UK (ALDDUK) in Birmingham. ALDDUK fielded a number of their own Members and kindly brought to Birmingham from Lithuania, at their own expense, some specialists in this field in order to brief Jeff Faulkner and the Trustees on the culture and present practice in Lithuania. There was frank discussion about the problems encountered by patients as well as the constraints on the actions of doctors, particularly on the limits in prescribing palliative medicines. ALDDUK were very welcoming of the aims of TTT and were encouraging of the work of the Franciscan Monks at Kretinga.
The next step was the Study Day (SD) held at the Oncology Institute at Vilnius University. The following are extracts from Michael Peart’s report following the event:
The SD was held as planned on Monday 9 March in a packed Auditorium of the Vilnius University Oncology Institute (OI). I judged it an unqualified success. The high turnout included professional staff and a large number of patient groups and other voluntary groups covering cancer and palliative care. There was great interest in the work of Macmillan and Marie Curie by all-comers; many were asking to see Jeff when he returns in May for the Survey. Both Jeff and Nicky Agelopolous of Marie Curie enjoyed the visit and found it a fascinating insight into Lithuania's health sector and society. Jeff is looking forward to returning for the Survey.
We had meetings with the Vice Minister of Health and the Director of the Cancer Institute before the start of the SD, during which we were joined by Simon Butt, the Ambassador. Both were well briefed about TTT and our purpose. In their opening remarks at the SD both were complimentary and supportive about what we were seeking to do. Simon's address focussed on the Third Sector and what voluntary work adds to society in the UK; he was very supportive of TTT. Jeff and Nicky gave two presentations each, accompanied by slides translated into Lithuania. Aldona and Benediktus made a powerful presentation on their Kretinga project and emphasised the link with TTT. Ruta Sargautyte made a strong presentation on the Expert Patient Programme and what it does for patients.
To round off a very full morning I told the meeting that the next step would be for the distribution of a questionnaire to all attendees linked to Jeff's Survey when he could hear from them individually. Following that, a Report would issue and would be available to all with an interest in the subject.
Over a buffet lunch there were introductions from many in the audience, clearly indicating a desire to progress and enhance the work they or their groups were doing. Many explained the lack of volunteering in the Lithuanian culture - one senior doctor said that the average man in the street focussed all his energy on keeping the family supplied with the essentials of life with little time for other interests. However, attendance at the SD by many volunteers showed that some people had both the time and the desire to become involved.
We had two quite extensive tours of the OI hospital. They appeared to have good call-in and reception facilities for out-patients, a small but modern Information Office, offering patients printed and oral information and a web-site updated daily.
Many departments in the hospital were well equipped thanks to money from international donors. The doctors seemed to be well- travelled, one senior oncologist had spent 3 weeks at a Birmingham hospital last year.
We also visited a very impressive hospital at Vilkpedes in the suburbs of Vilnius that had benefitted from a 2 million dollar refurbishment, courtesy of the World Bank, which had a number of palliative beds. The hugely competent lady Director runs a tight ship but she did say that volunteers to visit and talk to the long-term patients would do much for their morale.
This exposure to the work of MacMillan and Marie Curie whetted appetites within the volunteer groups. Those that attended were sent questionnaires in advance of Jeff’s Survey which he undertook in May. In 10 days travelling to the main centres Jeff was able to speak to dozens of people and see the varying provisions made for patients at cancer centres. He was well looked after by David Holliday and his daughter Liudovika as well as the Kretinga team. This gave Jeff a useful insight and allowed him to consider what steps might be taken to help the disparate voluntary groups to improve and co-ordinate their efforts on behalf of patients and families. During the summer, as well as moving house and undergoing treatment himself, Jeff has written a very full Report.
Jeff’s Report is now being translated into Lithuania and will be printed in both languages. It will be sent to the Minister of Health and the Director of the Oncology Institute and then be widely distributed throughout the country. It will be made available through a web-site. TTT supporters will be notified of the web-site address in case they wish to read it. The Report was deliberately weighted to give much useful information about policy and initiatives in the UK which are likely to be applicable in Lithuania. The principal recommendations are as follows:
Based on my experience with Macmillan in the UK, developing information and support services in a wide range of communities, both urban and rural, and following two visits to Lithuania involving discussions with a number of voluntary organisations, I believe the following would provide a basis for developing information and support services for people affected by cancer (PABC) in Lithuania. In making these recommendations, I am conscious that the success in achieving progress in these areas will depend, to a large extent, on the willingness of the various existing organisations to work together in producing national standards of quality assurance and for State bodies to give moral and perhaps material support to these non-governmental organisations. I believe that many of the existing specifically-focussed organisations can retain their independent identity, while joining under an umbrella to work together, where it is in the interests of PABC.
I, therefore recommend that consideration be given in Lithuania to:
a. Establish a Lithuania Cancer Information and Support website;
The web-site will provide information about treatments available, support services available, signpost to other relevant agencies and services locally, regionally and nationally.
Experience elsewhere indicates that a good website:
Helps raise awareness about cancer information and support issues:
Promotes consolidation, consistency and coherence across the area that it covers;
Facilitates a dialogue between PABC and health professionals.
b. Facilitate links between existing services and support a quality assured approach to provision and service delivery;
It will be essential to link existing current information and support services across Lithuania to maximise their effectiveness and encourage expansion; by
Providing information, knowledge and expertise;
Influencing and informing existing services and the development of new services;
Ensuring a quality assured approach to provision and service delivery that will lead to Lithuania-wide quality standards being established using, examples of existing good practice and best practice / guidance from other countries.
c. Develop a core information resource and associated quality assurance processes
Establish quality standards for cancer information and establish a core cancer
information resource, with inputs from PABC and professionals on a pan-Lithuania basis.
This will be stored on a database and made available to PABC and health
professionals via a website.
This activity will streamline information; ensure that what is provided is quality
-assured and will help identify potential gaps where information on a given subject is not available or where existing information is inappropriate to the nature of the need.
d. Link with health and social care professionals to establish cancer specific information pathways for each type of cancer
This will help to ensure that a minimum standard will be set for information that a
PABC could expect to receive at each stage of the care pathway.
e. Develop an education and training strategy
Develop a multidisciplinary strategy to support health and social care professionals in communicating with and informing PABC;
Develop an education and training strategy for PABC so that they are in a position to
help themselves, their families and friends cope with the consequences of cancer,
and, if they so wish, to volunteer to help other PABC.
As well as the above, Jeff recommended the establishment of an Umbrella Organisation as the best way of optimising the results of the recommendations above.
TTT is delighted to announce that the CEO of Macmillan has most generously offered the whole of Macmillan’s extensive literature for consideration for translation into Lithuanian as well as the use of Macmillan training materials. Four sets of the literature have already been delivered to Kretinga for study by voluntary groups and discussion is underway on the first batch of six booklets to be translated.
A further gesture by Macmillan has seen twelve volunteers attending a ten-day course of training modules and briefing sessions at The Mustard Tree, one of Macmillan’s most modern cancer centres in the UK, at the end of November.
Duke of Edinburgh’s International Award for Young People (IAYP)
In our first Newsletter we explained the support that BLS had given to the establishment of the IAYP in Lithuania. We are pleased that the spread of the Award throughout the country is making good progress. The following update is from Trustee Mida Babiliene.
There are 26 organisations in Lithuanian taking part in the programme (not sure how many young people in total, perhaps a few hundred). In September - October there was a conference and training organised for 28 potential leaders. Instructors from Finland ran the training. At the end of November, 4 leaders are travelling to Finland on a familiarisation tour. Agne Kvikliene, coordinator of the IAYP, hopes that soon there will be 15 more organisation taking part in the programme. Agne has travelled throughout the country extensively promoting the programme, which is now known in many parts of Lithuania.
There will be a ceremony organised on 4 December where young people will be recognised for completing bronze and silver levels.
There is an excellent website about the International Award for Young People in Lithuania: http://www.jaunimoapdovanojimai.lt/. (NB the English text does not mirror the Lithuanian text). So anyone in Lithuania who is interested can read about the programme and get in touch with Agne.
In the light of the recession, there is still a big question mark over whether the programme will receive any funding from the Ministry of Education for the next year.
British Scouts in Lithuania
(The Scouts mentioned below were briefed by Trustees Wendy Howe and Tom Macan before undertaking their trip)
In August, I was one of 30 Scouts aged 16 to 25 years, from across West Lancashire travelling around the Baltic States. We were set the challenge of walking 100 miles over 10 days, learning about local culture and carrying out mini projects along the way. In small groups, we visited different areas of all three Baltic States with several groups spending the majority of their trip in Lithuania. My group flew into Vilnius from Tallinn, enjoying the refurbished buildings in the City, the recent developments in Cathedral Square and the hospitality of local people. We then moved on to the coastal town of Klaipeda and hired bicycles, cycling up to Palanga and across to Kretinga. The sights on the trip were picturesque; however, following our long cycle and our late arrival in Kretinga we were very grateful of a bed for the night. The next day we were lucky enough to attend mass and were taken out mushrooming with one of the Brothers. Our last stop in Lithuania was in Siaulai, we walked to the Hill of Crosses and were overwhelmed by the site before us, we took hundreds of pictures but they just do not do it justice. We had a wonderful time in the beautiful country of Lithuania and were lucky enough to meet some very kind people, we hope that some of the scouts we met will be able to come and visit our scout camp next summer.
Rachael Hoyle
28.08.09
Zippy’s Friends in Lithuania
(This article is included not because TTT is involved but because we believe it to be a great example of the kind of work that TTT wishes to encourage)
Zipio Draugai has been running in Lithuania since 2000, and has grown from a small pilot study in the capital, Vilnius, to become a national programme, with classes running in kindergartens in all ten counties.
It was introduced through the collaboration of two agencies – the Education Development Centre, attached to the Ministry of Education and Science, and Lithuania’s first NGO, the Youth Psychological Aid Centre. Since then, a new non-profit agency has been set up to run the programme, Vaiko Labui (‘for the sake of the child’).
Newsletter No. 3 December 2008
From the Trust Desk
• At the end of the first full calendar year of TTT, the Trustees can report on a number of achievements. However, during this period, the Trustees have realised that there are innumerable opportunities for the kind of contact work, which we have set out as the Trust’s aims. For those new to the Trust, our aims in a nutshell are:
TTT seeks to exchange knowledge, skills and understanding between the United Kingdom and Lithuania. To achieve this, the Trustees seek out individuals and organisations in one country with something to offer in the other. This may be in terms of practical knowledge about a certain area, perhaps in the social sphere or education; techniques, maybe training methods or literature; and skills, such as improved ways of achieving a desired outcome. The Trustees are laypersons with the enthusiasm and the contacts to bring needs, solutions and people together. Whenever advice or support is provided, it is by organisations and individuals with relevant expertise.
• Our primary work since the last Newsletter has remained the Cancer Support and Palliative Care Project (CSPC). We report below on the visit to Northern Ireland and London in October by the Franciscan Monks and colleagues from the St. Francis Cancer Support Centre at Kretinga (referred to for ease as Kretinga), which exposed them to the kind of work done in these areas in the UK. The following extract from a recent letter from Kretinga gives a good summary of the Centre’s ethos:
We are pilgrims of hope, who are united in helping each other to live with cancer. In the last eight years, more than 800 cancer sufferers and their loved ones have rediscovered a purpose in life and found a new light and motivation to live. Together with the Franciscan Brothers, we have been able to create a healing environment; where a word, a look and a touch becomes a friend, a teacher, a doctor and a prayer. Inspired by the resilience and faith of patients, we decided to create the first cancer information and support centre in Lithuania.
• TTT is broadening its range of contacts in CSPC and we look forward to two major initiatives - a survey of activities in CSPC in Lithuania to be carried out by a top expert from Macmillan Cancer Care. We have high hopes that a report resulting from the survey will indicate the needs and point to ways to meet those needs in these sensitive and emotional sectors that affect a large number of vulnerable people. The second initiative is the introduction of the Cancer Specific Expert Patient Programme being planned by Madeleine Mulgrew of Cancer Choices and Trustee Wendy Howe. A further report below looks forward to our planned activities in the next few months.
• In Newsletter No. 2 we mentioned the publication of Megan’s Book in Lithuanian. Our Trustee, Mida Babiliene, reports that the book has been well received and copies are being sent to more children’s hospitals in Lithuania as well as being available on the web. We are keeping an eye open for further examples of this type of British publication that could benefit vulnerable groups in Lithuania.
• We are profiling in this Newsletter one of our closest partners so that our readers can get a better understanding of those helping us. Other profiles will appear in later Newsletters.
• With the transfer of Ambassador Vygaudas Usackas from London to Vilnius in December, to take up his new high appointment as Foreign Minister of Lithuania, we have lost one of our Patrons but we are pleased that we now have a good friend in the Government in Vilnius. We will approach the new Ambassador, when appointed, to ask if he or she will be willing to become a Patron.
• In one of his last kindnesses before he left London, Ambassador Usackas told us that he had nominated TTT to receive a sum of £1,300, on behalf of the Kretinga Project, from The Westminster Challenge, a group of MPs and diplomats who jointly undertake fundraising expeditions. This sum is part of the proceeds from a visit to the Great Wall of China. Next year, we understand that there will be a Westminster Challenge visit to parts of Lithuania.
• To help the volunteers at Kretinga, who are learning English so that they will better understand Macmillan training and printed material, a parcel of classic English language texts were sent in time for Christmas by Dr. Richard Bibby, following a contact made during the Kretinga visit in October. Trustee Wendy Howe reports that a friend in Vilnius who teaches English to adults swears by Mills and Boon – clear, simple but spicy language! However, we believe that a classical education never harmed anybody and are grateful to Richard.
• Readers will see that there is much going on at the desks of our Trustees. We are all looking forward to the challenges of the New Year, not least raising funds to allow us to do all of this good work.
Visit by the Team from Kretinga
Visit to Northern Ireland – Report by Trustee Tom Macan
The excellent arrangements made by Cancer Choices (CC) NI exposed visitors to the arrangements for the public provision of clinical care in Northern Ireland and a range of experiences for the provision of support for cancer patients at the grassroots level. But the very different nature of health service and volunteer activity in the UK as against Lithuania made a powerful impact on: the visit will have answered many questions, but can be expected to provoke a lot more.
The two-day programme focussed on cancer support but also took in the RC Cathedral at Armagh, the “Art on the Hill” exhibition in the ruins of Dungannon Castle, and the NI legislature at Stormont. The Servite Priory at Benburb generously provided accommodation: over 200 people came to their Monday evening mass, focussed on cancer patients and their carers. The Kretinga team launched their first Lithuanian language publication entitled “Cancer and the Emotions”; this will be used with the Lithuanian community in NI.
CC’s new HQ, an attractive cottage acquired in 2007, centrally located and convenient for the District Hospital, deliberately cultivates a non-institutional, home-from-home atmosphere. CC has about 50 volunteers and we had a useful discussion with 4 of them. They emphasised the importance of the 24-hour help-line: often the initial approach would come from a patient’s friend or carer but it was essential that the substantive approach came from patient. One might be looking at sustained contact over 8 to 12 months to integrate a new patient into the group. A good number go on to become volunteers. To a question about the spiritual aspect of CC’s work, Madeleine Mulgrew explained the non-sectarian basis of CC’s work: its doors are open to those of any faith, or none.
Macmillan hosted us at their two-year old centre hard by, but quite deliberately in a separate (and very different) building from Belfast City Hospital, the principal cancer treatment centre for the Province. There was impressively close liaison between the hospital and the Macmillan centre with a strong dependence on volunteers: a retired hairdresser in the wig-fitting salon gave an amusing and insightful account of that side of the work.
A major challenge is to ensure that cancer patients get the full benefits to which they are entitled: many have been in full-time employment and have no concept of how to do this. Macmillan has, therefore, jointly with Citizens Advice Bureau (CAB) installed an implant in the centre: they reckoned they had enabled patients to claim close £2m of benefits, which they would otherwise have foregone.
We were shown interview/counselling rooms, where thought had clearly been given to making the atmosphere as welcoming and non-threatening as possible. We also saw two complementary therapy suites: staff emphasised that such therapy was only offered when it could be shown to deliver clinically beneficial results.
The Belfast Cancer Centre, which is the provider of all outpatient treatment for the Belfast area: there are satellite treatment centres in several District Hospitals but all rare/difficult cases are handled in Belfast. The visitors were given a good insight into the process of managing patients and their treatment: travel is a significant issue and while public transport links are good, B&B accommodation at affordable prices attached to the hospital is important for patients and carers who travel from further afield.
One important message, given the professional/volunteer divide in Lithuania, was the importance that the professionals attached to patient welfare and support. For example, resources had been found to have an individual in the Radiology Dept, herself a radiologist, whose specific role was to talk to patients about their fears/concerns and point them in the right direction to obtain the necessary support.
The visit gave an insight into the immigrant – particularly Lithuanian - communities in N Ireland, particularly in the Dungannon area. The South Tyrone Empowerment Programme (STEP), talked about their strategic aim of raising skills across the community: the immigrant population in South Tyrone was roughly 30% Polish, 30% Lithuanian, 25% Portuguese. Two of those working at STEP were Lithuanians (one gave a polished presentation in English which her colleague then interpreted into Lithuanian). Four interpreters accompanied us in Belfast: all had come to the UK to do unskilled jobs, and had gone on to acquire certified language/interpretation skills.
Visit to London – Report by Trustee Ken Baublys
The team visited two Hospices (St. Christopher’s in Sydenham and St. Luke’s in North Brent), met with senior representatives of Macmillan, were guests at a reception at the Lithuanian Embassy hosted by Ambassador Vygaudas Ušackas, and met the Auxiliary Bishop of the Diocese of Westminster, whose diocese includes the Lithuanian Catholic Church of St. Casimir.
Four members of the team visited St. Christopher’s Hospice in Sydenham and were given a full picture of the international support that the Hospice can offer in relation to starting a hospice, and organising information resources. They signed up for the information newsletter sent out regularly by the Hospice.
Bishop Bernard Longley, Auxiliary Bishop of the Diocese of Westminster, has visited and is knowledgeable about Lithuania. He offered general support and specific help in promoting the fun run in Lithuania, which supports the Kretinga Oncology Centre. He also took the visitors on a personal tour of Westminster Cathedral including the crypt. Brother Benediktas invited him to become a patron of the Centre.
The main purpose of the visit to Macmillan Cancer Care was to meet Jeff Faulkner, Macmillan Regional Director for Central and South West England and Wales (retiring the following day) about the survey to be undertaken into the need for developing cancer patient support in Lithuania. Macmillan’s Chief Executive, Ciaran Devane joined us for part of the meeting and was generous in his offers of support.
Jeff Faulkner explained the respective areas of work of the three main UK cancer charities - Cancer Research UK (research), Macmillan Cancer Care (assistance to those living with cancer on a day-to-day basis) and Marie Curie (assistance to cancer patients in the last weeks of life). Macmillan sees its work as identifying gaps where special focus is required, and being both a source of support and a force for change.
A useful briefing on the production of information booklets and fact-sheets stressed the need to focus on the relevance of each item of information published and the need to use short, plain English words, with an explanation of longer ones where their use is unavoidable. Some fact-sheets have been translated into Asian languages, but none so far into European languages. It has been agreed in principle that Macmillan publications can be translated into Lithuanian, if somebody can be found to do the translations.
Simon Henderson, an architect, responsible for the design and construction of buildings for cancer patients, explained the strong importance of the physical environment for cancer patients. Plymouth’s “Mustard Tree Information and Support Centre” began with just one person and now operates from a purpose-built centre, with large numbers of volunteers, and has developed a national qualification for volunteers. This was helpful confirmation for the visitors that their general thinking in relation to what they are planning is on the right lines.
Mike Coward, Chief Executive, St. Luke’s Hospice in North Brent gave an account of their work. Its name notwithstanding, St. Luke’s has no religious links, and caters for a range of religious and ethnic groups in Brent and Harrow, with widely differing practices relating to death. Complementary as well as “standard” medicine is practised. The hospice has 12 beds, a day care centre, which up to 21 people can attend and some 630 volunteers. A Hospice Home Team plays a key role for families with a strong cultural tradition of caring for a terminally-ill patient at home.
No fees are charged. Of the total running costs of £4m a year less than 30% comes from the Government. Many of St. Luke’s volunteers help to run its eleven charity shops, which both raise money and keep the name prominent in the community. Another source of funding is a weekly lottery. Through contacts with local solicitors, it is sometimes possible to suggest a legacy to St. Luke’s when a client is making a will.
CSPC Developments
One of the potentially most productive contacts made during the Kretinga visit was with the Association of Lithuanian Doctors and Dentists in the UK (ALDDUK), comprising some 50 medical professionals working in the UK. They are in the unique position of having experienced working in both the Lithuanian and UK Health Services and are able to highlight both professional and cultural differences. They have kindly agreed to brief Jeff Faulkner ahead of his Survey of the CSPC Sector in Lithuania, expected to be undertaken in April/May 2009. A TTT/ALDDUK meeting is planned for mid-January.
Another important agenda item at this meeting will be the proposal being formulated by Madeleine Mulgrew of Cancer Choices and Trustee Wendy Howe to extend the Expert Patient Programme (EPP). This is a programme of lay led self-management courses developed by Stanford University in California, adopted by the NHS and supported by Macmillan. The aim is to support people living with long-term illness in developing the confidence, skills and knowledge they need to manage their condition better and to have more control of their lives. It was originally conceived for arthritis sufferers but is now used more widely. Madeleine and Wendy are in contact with Kate Lorig, the originator of the programme when she was a post-graduate student at Stanford, and a member of Arthritis Care in Scotland staff who went to Lithuania to help introduce their EPP, in co-operation with a pain-control specialist at the University of Vilnius. This specialist has indicated an interest in helping the development of the Cancer Specific EPP in Lithuania and we are delighted that she will take time from a heavy schedule to attend the mid-January TTT/ALDDUK meeting.
To prepare for the Faulkner Survey, TTT is planning a Study Day in Vilnius in March, which will provide background on Macmillan and Marie Curie programmes in the UK to an audience of health care professionals and volunteers in the care community.
Profiles of TTT Partners
Jeff Faulkner
Jeff studied Clinical Biochemistry at university, graduating in 1975. He joined the NHS after university and trained as an accountant. In 1987 he became Director of Finance and Deputy Chief Executive of the Hammersmith Hospital. From 1992 to 1994 he managed all of the clinical services at the Hammersmith Hospital before joining the Royal Surrey County Hospital in Guildford as Chief Executive in 1994. He left this position in 2003 to become Regional Director for Central & South West England and Wales (CSWEW) for Macmillan Cancer Support, which he retired from in October 2008.
During the time he led CSWEW over £50million was raised by the Region and in excess of 350 new services for people affected by cancer were developed. Jeff was the Macmillan lead for the development of the Mustard Tree Information and Support Centre in Plymouth and its outreach services which together see over 15,000 attendances per annum. He was also instrumental in the development of the first specialist community palliative care service in the UK in West Sussex, which replaced an inpatient hospice.
At the beginning of 2008 he led the merger of Cancerbackup (Europe’s leading provider of information for people affected by cancer) with Macmillan Cancer Support.
Jeff has agreed to work voluntarily with The Tiltas Trust to further new services for people affected by cancer in Lithuania and he met with the Kretinga Monks on their recent visit to the UK.
Jeff has been a Fellow of both the Association of Certified Accountants and the Royal Society of Medicine and is a Trustee of The Liver Group, a charity, which has raised over £5 million for research into the development of an artificial liver.
Healthcare and the Arts – by Trustee Tom Macan
In our September newsletter, we were looking for Lithuanian counterparts with energy and enthusiasm to take forward a possible project in-country. With the help of the Director of the British Council’s Vilnius Office, the Trust established contact with Roma Survilienė who runs the Lithuanian Artists’ Association’s gallery in Vokečių gatvė in Vilnius.
Together with colleagues in the health sector, Roma has developed an ambitious project called “Art Territory” which will take place from 22nd May to 23rd June 2009 as part of a “European School of Arts” cycle of projects in the overall framework of Vilnius – European Capital of Culture (VECC) 2009. With the overall theme of “The Tree of Life”, the central component is a one-month creative workshop for 20 young artists based in the old monastery building of the splendid baroque church of SS Peter and Paul (just across the road from the British Embassy). It will encompass not only practical training but also the generation and realisation of creative ideas in the Vilnius University Children’s Hospital.
Linked to this, the organisers plan an international conference on “Art in Health Care Systems: Experience and Prospects”, There are also plans to develop educational and therapeutic art programmes for children in the hospital. The hope is that this will produce not only new works of art for Vilnius University Children’s Hospital, but also inspire further discussion about importance of art in public city spaces
Roma was able to find time to visit the UK in November: the original plan was that this visit should coincide with an arts-in-health conference at Alder Hey Children’s Hospital in Liverpool. Sadly this conference had to be postponed but Alder Hey generously arranged for Roma to spend the best part of a day at the hospital with the Chair of the Arts Committee and the Arts Coordinator. She was able to see a number of artists working with children, and many of the artworks produced over the years as part of the programme. While in Liverpool, Roma was also able to meet representatives from the Liverpool Culture Company, organisers of Liverpool – European Capital of Culture 2008, and hear about their experiences in developing arts-in-health programmes with local Health Trusts, with the key importance of building long-term sustainability into programmes.
On the following day, Roma was able to visit Lime Arts, an arts-in-health consultancy located alongside St Mary’s Hospital in south Manchester. They were able to show her a number of programmes, which they had conceived and delivered, and expressed an interest in attending the Vilnius Conference. Her visit to the northwest was rounded off with a visit to the Lowry Gallery, and a contact with a local artist.
It will now be for the Lithuanian organisers to develop this project further. The Trust has offered some modest financial support towards a UK element in the project and looks forward to receiving proposals early in 2009. But it is excellent news that we have managed to identify Lithuanian counterparts keen to take forward the arts-in-health concept, in which the UK is a world leader, and that we have been able to link the Vilnius and Liverpool experience in this sector in the context of the European Capital of Culture framework.
Newsletter No. 2 September 2008
From the Trust Desk
• We had hoped to publish a second Newsletter a couple of months ago but developments have been so intensive that we decided to wait until we could give our TTT supporters a fuller picture of progress.
• We have some really exciting news concerning the cancer support project upon which we reported in the first Newsletter.
• The Trustees became convinced that our work in this area could lead to some worthwhile results because of the wealth of expertise built up in Britain over the years and the strength and skills available in organisations like Macmillan Cancer Support and Marie Curie Cancer Care. We also knew from our contacts with some groups in Lithuania that there is a demand for advice. However, we felt that our understanding of the groups involved in this work in Lithuania, their skills, strengths and weaknesses, was quite sketchy. There does not seem to be any umbrella body there, through which we can direct our efforts.
• In order to better understand the situation and thus allow us to target our help, we thought that a carefully organised survey of the cancer care sector in Lithuania would provide useful information, not only to us but also to the authorities in Lithuania. We are delighted to report that Macmillan has agreed to work with TTT in undertaking such a survey and the production of a report. Macmillan will provide somebody with the background necessary to look at what exists on the ground, what seems to be needed and offer thoughts on how to move forward. TTT will pay for travel and subsistence costs.
• The Minister of Health in Lithuania has been approached by our Patrons, the two bilateral Ambassadors, and has, informally, given the project his support. The timing for the survey is likely to be late winter/early spring, following this autumn’s parliamentary elections and their aftermath.
• Trustees Wendy Howe and Michael Peart have also held a most productive meeting with Marie Curie to better understand their work in palliative care in Britain. They were particularly struck by the “Delivering Choice” programme. A team of Marie Curie specialists have undertaken studies within certain Health Authorities to see what the constraints are to giving terminally ill people their oft-proclaimed wish to spend their last days at home, rather than in a hospital. Research has led to new ways of co-operating between health, social and other organisations that need to work together to provide support for such a patient at home. Research published last year in a professional journal has indicated that Britain is at the top of the league in providing palliative care. Our information from some individuals in Lithuania is that palliative care is not yet widely available. We are therefore considering extending our cancer care project to include palliative care. Because palliative care usually involves medical and social care professionals more than volunteers, our further work in this sector will also be subject to getting the agreement of Lithuanian officials.
• In addition to their help with a survey in Lithuania, Macmillan is receiving the visiting group from the Oncology Centre of St. Francis at Kretinga in October, – see the story below. The programme for this visit is very much the product of a partnership between TTT and Madeleine Mulgrew and Cancer Choices in Dungannon. We hope that it will allow the Kretinga Team to broaden their understanding of methods, techniques and information available in Britain and to develop their own plans with the benefit of our experience.
• Thanks to great efforts by Trustee Mida Babiliene, Megan Blunt's book Chemotherapy, Cakes and Cancer (a child's narrative of her own personal journey through cancer) was printed in Vilnius in Lithuanian and has been published on the web at: http://www.clicsargent.org.uk/Publicationsresources/CLICSargentpublications
We are delighted that this, our first TTT sponsored translation, is of a high quality and that its target audience is children in need of support at a difficult time for them. We have learned a lot about the translation, proof –reading, printing and publication processes through Mida’s hard work and should be in a better position to manage the process next time. Megan's book in Lithuanian may be viewed at: http://www.clicsargent.org.uk/Publicationsresources/Otherlanguages/ChemotherapyCakesandCancer/main_content/CCCLithuanian.pdf
• Trustee and TTT Secretary, Kastytis Baublys, has been approached by the Chairperson of the Lithuanian Association UK to explore whether they might be able to arrange a formal working relationship with TTT. Discussions are ongoing.
• Trustees Tom Macan and Wendy Howe have been busy looking at Healthcare and the Arts and we see potential for a project in this area. From Wendy’s professional experience she notes that children soon become institutionalised. In the past, there has been sponsorship for a poet in residence at Liverpool’s Alder Hey hospital, children have been able to express themselves through this medium and examples of their work are displayed in the corridors and wards. See Tom’s article below.
• The recently appointed British Ambassador to Lithuania, HE Mr Simon Butt, has readily agreed to become a Patron of TTT in place of Colin Roberts who has returned to London to become Director, Overseas Territories, at the FCO. Simon has already been in action in support of TTT in contacts with the Minister of Health.
• Finally, for this Newsletter, TTT has received its first contribution from HM Government, this being the Gift Aid contributions for which many of our supporters signed forms. This amounted to £704.85 a not insignificant sum, given the size of our Trust.
Visit by the Team from Kretinga
Supporters will have read in our first Newsletter of our early contacts with the group of Franciscan Monks at Kretinga. These links have strengthened as was reported in the article by Madeleine Mulgrew in Tiltas Vol.9 No.2 Page 45 of August 2008. Her article is reproduced below:
Following on from their visit to Lithuania in October 2007, The Tiltas Trust (TTT) delegation and partners from Cancer Choices in Northern Ireland, visited again in May 2008. Along with partners in Lithuania, TTT has been looking at cancer-related needs, such as support in the home and the community, and hospice provision throughout Lithuania. A link has been forged with the Franciscan Monks at Kretinga Monastery, the initiators of a new project to build a Day Care Centre for cancer patients and their families in Klaipėda.
Lithuanian counterparts have drawn upon the information and ideas exchanged during the first visit to identify areas of development, and have organised two groundbreaking events. These are the first ever Self Help and Support Cancer Conference and the very first charitable fund-raising Public Cancer Awareness Fun Run in Lithuania.
The Conference, hosted by the Franciscan Monks from Kretinga, took place on 10 May. The organisers were B-LS member David Holliday who lives near Klaipėda and Aldona Kerpytė, Director of the Day Care Centre. Ms Kerpytė opened the conference and extended a warm welcome and thanks to the UK and NI teams for their attendance and participation on the day.
The British team demonstrated the current UK model of self-help and support through training and education and successfully highlighted potential training and education programme opportunities that could be developed to meet the needs of the Lithuanian population. Brother Benediktas from Kretinga spoke of the great need to adopt a holistic approach for people affected by cancer, including spiritual support. Two locally based psychologists launched their first-ever patient information booklet, ‘Cancer and the Emotions’, designed in partnership with their team of volunteers, cancer patients and family members who use the Kretinga Monastery support system.
Mida Babilienė (a TTT Trustee and Head of Press and Public Affairs at the British Embassy in Vilnius) launched the translated Lithuanian version of the book Chemotherapy, Cakes and Cancer, written by a child, Megan Blunt, charting her own personal journey through cancer. Wendy Howe (TTT Trustee) had come across this publication and felt that it would be of great benefit and an inspiration to children and others living in Lithuania. Wendy arranged for translation of the book into Lithuanian, funded by TTT, and it is now available on the website of the publishers, ClicSargent.
Some delegates spoke very movingly of their own personal experiences, their sadness at the lack of current support services, particularly in rural communities and shared a great willingness and a strong desire to move this project forward.
About 80-100 people from across Lithuania attended the conference – a mixture of health professional, support groups, patients, carers and family members.
The second event, the 9.9km Fun Run, took place on 11 May and B-LS Treasurer Peter Howe completed the whole distance, raising £872 in sponsorship. The event attracted a number of sponsors who provided T-shirts and funded the awards ceremony which took the form of an open-air concert with entertainment provided by the local community, including artists and school children. Over 2000 people attended the event and it was hailed as a huge success.
The Fun Run will become an annual event based on the concept of the London Marathon and the date has already been set for next year – Sunday 31 May 2009. Enough time for B-LS members to get into training for a very worthy cause.
Madeleine Mulgrew
Cancer Choices, Northern Ireland
To build more firmly on these contacts, TTT and Cancer Choices have invited a team from Kretinga to travel to Northern Ireland and London in October to visit organisations that have experience to offer the Monks as they plan and build their new cancer support centre in Klaipeda. Joining the team will be David Holliday, B-LS Member living in Lithuania who many of you will know through his letters to Tiltas. David is a strong supporter of the Monks project and has been busy as an intermediary for TTT. Also coming is Liudovika Pakalkaite, David’s Stepdaughter, another keen supporter of the project.
Amongst the organisations they will visit in Northern Ireland are Cancer Choices Therapy and Support Centre in Dungannon, the new Macmillan Cancer Information and Support Centre in Belfast and the Belfast City Centre Hospital Oncology Centre. They will be present for the British launch of the first Oncology Centre of St. Francis publication at a Reception hosted by the Mayor of Dungannon & South Tyrone, Cllr The Lord Morrow. In London there will be visits to: Macmillan HQ; St. Luke's Hospice, South Brent -already linked for several years and advising Slaugos Ligonine Kauno (hospital for the terminally ill in Kaunas) – see the article by Michael Coward, CEO of St. Luke’s in Tiltas Vol.7 No.2 Pages36-38; and St. Christopher's Hospice - advises on the setting up of hospices throughout the world, holds international conferences and has the largest library on the subject of palliative care which is accessible to all.
One of our Patrons, HE The Lithuanian Ambassador, Mr Vygaudas Ušackas, will be offering a Reception to allow the visitors to meet key people in this area of work.
Coincidentally, the Kretinga visit is in the same week as International Palliative Care day on the Saturday, the theme is: "Palliative Care A Human Right"
We will be reporting fully on the visit and its outcome in the next Newsletter.
Healthcare and the Arts – by Tom Macan
The Trust’s work on cancer care has made us look at the challenge of making the “hospital experience” a less stressful one, particularly for child patients. It’s an area where the UK has much to offer. With Wendy Howe, I have been looking at the British experience and the possibility of applying this in a Lithuanian hospital. Liverpool’s Alder Hey Hospital is a regional centre of excellence for paediatric medicine and probably the largest children’s hospital in Europe. They have an extensive programme for bringing art and artists into the hospital: Wendy and I visited them in January 2008 to sit in on their regular arts meeting and experience something of the work being done.
• We saw some wonderful murals –painted by professional artists and by patients themselves – in the hospital corridors.
• We heard the “birdsong tape” being played over the public address system. A particular problem for long-stay patients is that they have no opportunity to hear the sounds of the natural world.
• We witnessed a professional artist running a workshop for children awaiting surgery on the day ward. The reduction in stress and tantrums was palpable.
At the national level, Arts for Health www.artsforhealth.org at Manchester Metropolitan University is doing research into the subject and helping to spread the message. In addition to the obvious social benefits, there are strong economic arguments for such programmes: patients who participate in them recover faster, leave hospital sooner and thus cost less to treat.
The Trust’s hope is that it will be possible draw on the richness of cultural life in Lithuania to replicate some of this experience there. Some activity is already going on, but our impression is that this tends to focus specifically on therapy, particularly in the mental health sector, and to have narrower objectives that what is being undertaken in the UK.
There is much goodwill, and a readiness to help on the part of our friends at Alder Hey. We are also looking at ways in which these ideas could be progressed in the context of Liverpool and Vilnius as European cultural capitals for 2008 and 2009 respectively.
The challenge that we face is in finding Lithuanian counterparts with energy and enthusiasm to take forward a possible project in-country. If TTT supporters can help identify such individuals, this would help greatly in taking this idea forward. Such a person might attend the Alder Hey conference on this in November.
Newsletter No. 1 February 2008
From the Trust Desk
At the launch of TTT on 30 May 2007 at the Lithuanian Embassy, the Trustees were hopeful that some interesting ideas for projects might emerge in due course. In the event, we are already deeply into a major and most exciting project covering the transfer of experiences in Lithuania and the UK about the encouragement of cancer support and self help groups for cancer patients and palliative care more generally. An exploratory visit to Lithuania in October by Trustee Wendy Howe and a group of volunteers and practitioners has opened a range of possibilities for exchange visits to look at best practice and provide training. One of the key findings to emerge was that both sides have things to learn from one another. The Trustees feel that this is just the kind of area in which TTT should be involved. Extracts from reports by the participants are printed below to give TTT supporters a feeling for the cancer support project.
Being plunged into a complex and sensitive project has meant a steep learning curve for the Trustees. We will be looking at lessons already emerging from these contacts to establish our own best practice in handling ideas for new projects as well as developing the projects themselves. Our overarching aim is to put organisations in either country in touch with counterparts in the other country, smooth the path for productive exchanges, suggest funding sources and then let the work be taken forward by those with the expertise. Our “Objects”, that is our aims and objectives, are quite widely drawn but we must remain within those parameters. We want to be a catalyst; we neither have the expertise nor the resources to get involved ourselves in professional or technical areas.
We are delighted that B-LS Members are being supportive of the Trust by taking out Sustaining Membership for 2008. We are also grateful to supporters who have donated individually. Some of these contributions have been targeted towards the cancer support project. We welcome all support, be it targeted or general. We hope that all our supporters who are UK taxpayers will complete a Gift Aid declaration allowing us to enhance the contribution by 28%, courtesy of the Chancellor.
On 21 January 2008 the Trustees held our Second Committee Meeting over a whole day. We agreed to see whether the wealth of experience available to and through the “Third Sector” (i.e. non-governmental and non-private/commercial) in the UK could be made available to Lithuania. We believe that the strengthening of the Third Sector in Lithuania could provide a tremendous boost to the benefits of all those who are the targets of “good works” like that we hope to provide. In informing the President of Lithuania, during his visit to London in mid-February, of the establishment of The Tiltas Trust, the Chairman asked Mr Adamkus whether he felt there was anything we might do to assist the Third Sector.
We plan to issue Newsletters from time to time when there is something to report. They will be posted on our web site. We welcome comments, ideas for new projects and volunteers willing to become involved. We believe that there is an inexhaustible supply of potential links between the two countries that could benefit groups and individuals and we are willing to consider any idea that fits within the Trust’s Objects.
Who’s Who of the Trustees
Michael Peart – Chairman
Retired Diplomat. First Ambassador to Lithuania 1991-4.
Chairman of the British-Lithuanian Society since 1999.
Rotary Club of Sherborne Castles: President-elect 2009-10.
Married to Helena with one son
Kastytis (aka Ken) Baublys – Secretary and Legal Adviser
Retired as a member of the Senior Civil Service in 2001, having worked as a lawyer in the Departments of Social Security, the Environment and Health. Prior to qualifying as a solicitor, taught philosophy at the University of Lancaster. Has for many years been an active member of the Lithuanian community in Great Britain.
Wendy Howe – Treasurer
1966-1969 –Trained as State registered nurse.
1970 – Married Peter, have two sons and one adopted daughter.
Retired SRN.
Tom Macan
Former diplomat. Second British Ambassador to Lithuania. Subsequently Deputy High Commissioner to India and Governor of the Virgin Islands. Now retired in his native Lake District with a large garden and a steam launch.
Mida Babiliene
Head of Press and Public Affairs Section at the British Embassy in Vilnius. Joined the Embassy in 1991 and was the first member of the local staff. Married to Darius and has two sons.
Cancer Choices Project
Conceived by Trustee Wendy Howe, with her background in Nursing and her personal knowledge of the help offered in Britain to cancer patients, their families and carers, this project sought to establish what similar support was offered in Lithuania and whether the British experience would translate to the circumstances of Lithuania. We decided to partly-fund a small group of practitioners to visit Lithuania in October 2007 to see whether we could do anything useful. This group all generously partly-funded their visits. Short extracts from reports written about the visit are given below. As a result, the Trust has decided to continue providing assistance to the Brothers at Kretinga, a group of dedicated people with a track record and the skills to take forward their enterprising plans. At the same time, we realise that we only have a partial picture of the cancer care scene in Lithuania and we are seeking ways to gain a clearer overall view.
Visit Report Extracts (all of the views expressed are those of the authors and do not necessarily represent Tiltas Trust views)
Madeleine Mulgrew Project team leader from Cancer Choices Northern Ireland: an independent patient led cancer self help & support registered charitable organisation
Arriving in Kretinga we had lunch and formal introductions with Brother Benedict head of Franciscan Monks and Aldona Kerpyte, chief librarian of Kretinga Library, who is leading the new Cancer Therapy centre project.
Here we were briefed on the Franciscan monks’ project to build a new cancer therapy centre located beside the main oncology centre in Klaipeda about 5 miles from their monastery. Estimated date for completion of this new build will be 2010. It will house a church, a sports hall, and a communal room, which is to be used as a support centre for people affected by cancer. Currently the monks are spiritually supporting a group of between 150-200 people affected by cancer on a monthly basis. However, the demand for support is becoming more frequent and can be every week. Brother Benedict’s interest in this project was to identify how he could develop, manage and sustain the current level of support he was offering. He also wanted to identify innovative ways to provide educational and training programs for the new centre; in particular he was interested in the concept of volunteering and self-help, self-management, funding and fundraising. . The Franciscan Order is currently funded by public donations and is subsidised by the American branch of Franciscan Order.
En-route to our next session in Pastuva we had a 2-hour scheduled afternoon visit with Doctor Asta Sileikiene, her husband and a practice nurse manager. Asta’s family medical practice is located in an area of social deprivation on the outskirts of Kaunas. Asta provides a well equipped clinic with 6 doctors, 5 nurses, a dentist, psychiatrist and a secretary to meet the needs of 8000 patients on her books but the surgery is small and cramped and desperately in need of new build or repair. Asta has a vision to extend her end of life home care and palliative care services within the community while at the same time develop the self help and support system for people who have survived cancer. Asta and her team are passionate, dedicated and determined to improve the quality of care and delivery of services to people affected by cancer. It was evident that this team are working under enormous social, economic and emotional constraints with demand for services outweighing financial and human resources. Their passion and emotional commitment to encourage and promote changes that will improve delivery of services, not only for people affected by cancer but also for all their patients, were so overwhelming and strong you could almost have touched it.
The loss of significant health care professionals, key workers and family members through migration has been detrimental to the infrastructure of the family unit, the health care systems and the delivery of services in Lithuania. Mass migration has greatly impacted on family and community support mechanisms normally available in other countries
This pilot project has proven to be an emotionally challenging journey and a steep learning curve for everyone. We are all agreed that the outcome has been a very positive experience for both countries.
Through this cancer awareness visit we have been inspired by each other; we made new friends and established new links. The hospitality, respect and dignity we encountered during our visit were a testimony to the good relationships that currently exist between our two countries. Having identified potential new projects I feel we have much to offer the Lithuanian communities in particular at patient, carer and grass roots levels. I look forward to the future development of this project where we will continue to offer our support and encouragement in the development of self help and support currently being offered to people affected by cancer living in Lithuanian.
The quiet dignity, determination, dedication and commitment that we encountered during our visit by the Lithuanian people both in a personal and professional capacity to support the most vulnerable people in their society, often in extreme circumstances, was an overwhelming emotional and spiritually uplifting experience.
Wendy Howe, Trustee, The Tiltas Trust
I understand from feedback, after our three days in Kretinga, that we had imparted practical ideas for ways to start up small groups in the surrounding areas [50-200 people or more can come together at any one time at the moment]. We also outlined courses that can be devised for volunteers to take that, in the future, can also lead to some volunteers becoming tutors. Such courses may be learning new communication skills, how to advise on the management of pain, how to work with people who have just had a bereavement in the family and much more.
People in smaller rural groups can support each other both practically and emotionally on a daily basis when necessary. They can learn techniques to promote self-help, giving independence and, therefore, confidence and this, in turn, means that people take back the control over their own lives that they feel they have lost at the time of diagnosis. This is a time when it may seem as if one is on a “medical conveyor belt”. These smaller groups will be lucky to have the opportunity to meet as one larger group in Kretinga once they are formed and when Brother Benediktas’ dream of a day centre and other facilities are built next to the oncological centre in Klaipeda. Then no one should ever need to feel alone as it will always be there as a pop-in centre.
Two remarks at the end of the day stay with me. When I said to someone, ”well we have given you a skeleton structure of how things work in the UK” the reply was “Oh! You have given us far more than that”. A leader of a professional team remarked that ”he thought that he already had many good ideas but now he felt he had been given even better ones”.
John Noble Tiltas Trust Donor
Visit to Dr Asta Sileikiene’s clinic on outskirts of Kaunas. In a very poor and deprived area of the city in a shabby wooden building but inside a very well equipped surgery with 6 doctors, 5 nurses, a psychiatrist and dentist and 5 secretaries. But with over 8000 patients on their books – some over 200kms away – the surgery is very cramped and desperately needs new buildings. Dr Asta and staff have a very dedicated and enthusiastic outlook but, as a private practice, have funding problems with all aspects of practice including provision of medication! They even do home visits and nursing for the terminally ill and ideally would like to develop a hospice / carer centre in the area because of the desperate need and demand. A good project with an inspirational leader, who is struggling to cope with the enormity of the workload, and who is obviously well respected in the community (the clinic was the only building in the whole area with no graffiti or litter).
Visit to Kaunas Hospice. Appalled by shabbiness of building and overcrowding of patients – this is the only hospital for the terminally ill in Lithuania. Utterly impressed with dedication of staff and the care they provide in difficult circumstances. They have 45 beds all permanently full – physio room and a new shower and washroom provided by Mike Coward of St Luke’s Hospice in London. Desperate need for lifting equipment, hoists etc to help patients. Government funding is only for treatment – not for buildings or equipment! - they only fund one nurse for 36 patients! This hospice gets a very small amount of support from patients / ex patients’ families in the form of small donations. The common room was recently decorated by volunteers and retired nurses help with some of the caring. A chaplain / priest visits once a week. This is a very worthwhile project to support, aid and help develop. Not only because of the desperate need but also the dedication and caring nature of staff – patients were their total priority.
The visit as a whole was an utterly worthwhile project, even if it goes no further, because of the exchange of ideas and the thought provoking impetus that ‘Cancer Choices’ delivered to the doctors, nurses, administrators and PATIENTS AND CARERS (including priests, monks and nuns) which should give a boost and direction to make demands on the Lithuanian Governmental authorities to help fund this desperately lacking section of the health service.
Duke of Edinburgh’s Award Scheme
An attempt was made some 10 years ago to introduce this scheme into Lithuania by the then Defence Attaché at the British Embassy. Perhaps due to the absence of a link with the Scheme’s HQ in London, interest withered. Three years ago Tiltas Trustee Wendy Howe suggested that the British-Lithuanian Society (B-LS) attempt to introduce the Scheme to two schools with which Members had contacts. Since then
B-LS and the Trust have given financial and practical support, including visits by two British Awardees. HRH The Duke of Edinburgh formally launched the introduction of the Award in October 2006, during the State Visit to Lithuania by HM The Queen.
In January 2008 there was a ceremony of Bronze Awards held in Vilnius. 19
young people (2 from Velzis School, 4 from Panevezys school Nr 5, and 13
from Gargzdai school) received bronze Awards. Some institutions
received Independent Operator's Licences, indicating that the benefits of the Award are being recognised by other institutions. ). The British Ambassador Colin
Roberts presented the awards.
The Lithuanian body given responsibility for promoting the Award is the Agency of International Youth Cooperation (www.jtba.lt) who has established a special branch
of Tarptautiniai jaunimo apdovanojimai (International Award for Young
People) ( http://www.jtba.lt/index.php?pageID=67).
Megan’s Book
The Trust were very impressed with a book written by Megan Blunt, a 14 year old girl who won “The Pride Of Britain” 2007 Award and who has been through chemotherapy. This is Megan’s personal experience and coping strategies that she hopes may demystify a little of the hospital experience and promote a positive attitude; she mentions the "black" days too.
The Trustees felt that it might have relevance to young people in a similar situation in Lithuania. The book was shown to doctors in Lithuania who gave positive feed back and welcomed a book that had not been attempted to their knowledge before.
We have had Megan’s book “Chemotherapy, cakes and cancer” translated into Lithuanian with the agreement of the UK publishers, ClicSargent, who will promote this on their website. It can be printed out for young people in Lithuania without access to a computer. For those who would like to read Megan’s book in English, it can be seen at: http://www.clicsargent.org.uk/Publicationsresources/CLICSargentpublications
Charity Commission financial report for the year ended 31/12/08
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