In conjunction with its Lviv-based partner, Dzvin, CHI organised a week-long visit to the Ukraine in April 2002 to improve the care of children with cystic fibrosis. The UK team is based at the Royal Brompton Hospital, London and was led by Dr Mark Rosenthal. Later in the year, Ukrainian medical specialists and health officials paid a return visit to the UK.

Full details of the project are given below. This illustrates how CHI undertakes its projects and also describes some important outcomes. Or,read about it in Ukranian.

2002 PROJECT TO IMPROVE THE CARE OF CHILDREN WITH CYSTIC FIBROSIS (CF) IN UKRAINE.

INTRODUCTION

The UK Department for International Development (DFID) launched a programme in 2001 to improve the health and social care of citizens of the Former Soviet Union and Eastern Europe and sub-contracted the organisation of the programme to a consultancy known as HLSP Consulting, London. CHI, then known as IIHA, in conjunction with a partner NGO in Ukraine, known as Dzvin (“Chime”) submitted a bid to improve the diagnosis of CF, the care of children with CF and to enhance the advocacy skills of parent support groups. The project would focus on the Specialised Children’s Hospital in Lviv. Tony Wolstenholme became the project manager on behalf of CHI in January 2002. The project would be in two phases – first, a visit to Lviv and to two other regional centres in Ukraine with CF. Laboratory equipment and techniques were discussed relating to CF gene mutations and one interesting scientific paper was discovered relating to a patient known to the RBH team. We met the Director of the Institute, Professor Oleg Hnateiko, Dr Hayane Akopyan and Dr Halina Makukh.

DAY 2: VISIT TO IVANO-FRANKOVSK

Tuesday 23^nd April. Ivano-Frankovsk is 150km southeast of Lviv, almost in the foothills of the Carpathian Mountains, and an Oblast centre. Our party to Ivano-Frankovsk included Drs Bober and Liga, Olga Hinka of Dzvin and Ilarion Yaremchuk, Solvay Pharma Representative in Kyiv. We travelled in a 10 seater mini-bus through rural, rolling countryside in full blossom with farming activity very evident. Apart from the use of horses for ploughing and travel, chickens, geese, turkeys, ducks seemed to be everywhere – not to mention some picturesque storks’ nests!

Our business was based at the Regional Children’s Clinical Hospital and CF children with their parents from 2 other Oblasts, Chernivtsi and Zakarpattya, had come for consultation with the RBH team.

In her welcome, the Chief Doctor informed us that each year they expect about 10 CF children to die in their first year of life – which seemed a high and unacceptable mortality rate. With uncertain national statistics – officially over 500 children in Ukraine diagnosed with CF versus the likely figure of about 3000 cases – she also informed us that the local incidence of CF was higher than the national average at 1:920 (national figure 1:2300). This was due to in-breeding – marriage between relations. It was agreed that the clinic would require at least two rooms – for consultation with Dr Rosenthal and to give physiotherapy – and that all parents would be convened for a final session, both to talk with them and to answer their questions about CF.

Mostly local Doctors presented their cases but there were never less than 10 doctors present to hear the diagnosis and prognosis. Many children were seen with these points arising: –

One child had had his diagnosis confirmed in faraway Moscow.
The main enzyme, CREON, is under-used or taken in adequate doses owing to its expense. Its cost is disproportionate relative to family incomes
Antibiotics, such as ciprofloxacin, can be prescribed and administered when judged necessary by parents. Ukrainian Doctors were recommended to permit greater “self-medication”, which, in turn, should reduce the subsequent need for IV feeding.
Most patients referred to Emma Dixon for chest physiotherapy – to help the child, to show local medical staff and parents recommended techniques.
Most diagnoses had included a sweat test.
Patients’ records often recorded in “exercise” books – no sign of any computerisation of records.
Cost of a nebuliser, CREON and relevant antibiotic far beyond any family’s means. Cost is a total of 3442 Gryvna plus $150 for the nebuliser or 4200 Gryvna ($540) – Doctor’s salary in Lviv is 220 Gryvna a month. And often paid late.
Young girl, Anna, aged 1 1/2 years, would be prescribed drugs costing Gryvna 22,000 per year – compared to average annual income for two working parents of Gryvna 6000 per year.
Even when it proves very difficult to confirm a diagnosis of CF, a recommendation to “treat what you find” – associated with the case of a 7 year old girl, suspected to have CF but treatment stopped 6 months ago. Diagnosis now confirmed in this clinic – suspension of treatment unfortunate. Immediate admission to hospital recommended in order to compensate for “lost time”.
Boy aged 4. Elder brother had died from CF. Not taking continuous oral antibiotics to counter staphylococcus aurelia
Intake of Creon seldom exceeds 4000 units per kg weight per day. This should be a minimum and, if affordable, doses up to 7-9,000 units are recommended as this helps sustain a child’s weight and promotes better health.
A 6 month old girl who had received no treatment at a small local hospital, now presenting for the first time at this clinic. Only 2 days worth of antibiotics available to treat her. Probably $1000 needed immediately to save her.

CONCLUDING MEETING AT IVANO-FRANKOVSK.

Dr Rosenthal addressed a group of about 30 Doctors and parents and answered questions. These points arose: –

Physiotherapy is the most important component of CF care: Emma Dixon gave a demonstration. Some parents remained sceptical that this gentler treatment could be more effective than the local “aggressive” and slapping technique.
Exercise should be encouraged but is not a substitute for physiotherapy.
All vaccinations available should be accepted and an anti-flu vaccination is strongly recommended.
Neither Doctors nor parents present had any access to the Internet – as a source of information.

As a result of this visit to Ivano-Frankovsk and earlier experience at Lviv, it was felt that the two most important pieces of equipment that could be provided would be a spirometer (approximate cost $1500) and an oxygen concentrator or oximeter (approximate cost $1000).

DAY 3: VISIT TO TERNOPOL

Wednesday 24^th April. Ternopol is 135km East of Lviv and on the road between Lviv and Kyiv. It is an Oblast Centre – much of the local economy relies on agriculture. The clinic took place at the Regional Children’s Hospital at Academician Zakharov Street. Children and their parents from 2 nearby oblasts, Rivne and Khmelnitsk, had been invited to attend the clinic. On arrival, we were welcomed by the Deputy Head of the hospital, Dr Alla Petrovna Filyuk. She mentioned that her hospital and the regional children’s hospital in Lviv are the only 2 hospitals in Ukraine to be members of the World Association of Children’s hospitals. The hospital has 405 beds. At any one time, up to 150 mothers may be temporarily accommodated at the hospital. There are 24 departments, 140 physicians in a total medical staff of 900. Children with CF are dealt with in the Immunological or Gastro-enterological Departments and most see a geneticist. The hospital has a department of 24 physiotherapists, including 2 doctors, but no one specialising in CF.

It was soon noticed that, owing to water shortages, the water supply to the hospital had been temporarily cut off.

At the clinic, Dr Rosenthal and his team saw 20 children, some of whom had had a CF diagnosis confirmed and some with unconfirmed problems. The clinic took about 5 hours without a break. Almost all children underwent a spirometer test (Spirometer brought by the RBH team). The following points may be worthy of record: –

Some parents and children had left home by 0500 and travelled over 200 km from such places as Kamyanets-Podolsky to attend the clinic.
No family could afford the cost of enzymes, specifically the cost of CREON
Growth charts not being used in many cases to monitor patient’s well-being
Girl, aged 13. More the size and appearance of a 9 year old. Stool colour yellowish. Cries frequently, day and night. Recurring respiratory problems. No evidence of sputum. Taking CREON but if stopped, experiences tummy ache and constipation. Diagnosis – probably neither CF nor Steatorrhoea. CREON should be stopped and the girl admitted to hospital for 3 days for further tests.
Too many CF children on low fat diet instead of the recommended high fat diet.
Some children achieving good lung function, with marginal sweat test results, taking CREON but evidently not in good health. Recommendation – repeat sweat test and investigation.

Dr Rosenthal, again, held a final meeting with parents and Doctors. He emphasised: –

Physiotherapy is much the most effective treatment for CF and costs nothing.
Diet is most important and a low fat diet is not recommended.
If growth of the CF child is maximised, CF complications are minimised.

Answers to questions raised were: –

Better to look after your own lungs than to dream about lung transplantation
Surgery for removal of nasal polyps is mostly a last resort when breathing is seriously impaired and other forms of treatment normally suffice
CF is not curable but is entirely treatable
Any patient can take homeopathic compounds – but only in addition to pharmaceutical drugs.
There are no differences in the advice offered to CF patients in Ukraine from the advice given to patients in UK – i.e. no difference in education but much difference economically as access to antibiotics and to CREON in UK is unhindered or free.

The first of two requests for help in arranging postgraduate medical training in UK was received.

The team returned to Lviv. In terms of the costs of a high fat diet, a brief visit to the local market was undertaken to assess the prices of certain products, to help the RBH dietician to make appropriate local diet recommendations.

DAY 4: IN LVIV – CLINIC

Thursday 25^th April. 30 children were expected at the clinic as well as the TV station team to continue shooting their film. The start of the clinic was advanced and other steps taken to accommodate this large number. Dr Bober ensured that we managed matters as efficiently as possible. Many children arrived dressed in their “Sunday best”!

Points arising from the clinic: –

Boy aged 16 years: had had consultation with Dr Rosenthal in 1999 and been prescribed Prednisolone. Parent considered overall condition much as in 1999. Disappointingly, recommended physiotherapy technique in 1999 had not been adopted. Boy had had no time off school owing to CF. Recommendation – 4 courses of IV antibiotics per year – ideally, Ciprofloxacin. Treatment for this boy, antibiotics alone, would cost about 22,000 Gryvnas per year versus family income of about 2500 Gryvnas.
Girl aged 11. Diagnosis of CF unconfirmed; up to the age of 9, suspected asthma. 2 sweat tests had indicated 80 and 91 Cl. No CF gene mutation revealed by genetic analysis. Pancreatic sufficient. Chest X-ray cause for concern – therefore no need to take CREON, as she does currently. Detection of S. Aureus – rare in an 11 year old CF patient. Some impairment of hearing. Likely diagnosis – Primary Ciliary Dyskinesia, which should be confirmed by electronic microscopy and nasal nitric oxide analysis. Parent advised that CF very unlikely to be cause of child’s ill-health. She might lose up to 74 Gryvna/ month in allowances, unless the PCD also qualifies for allowances.
Small girl, aged 6 years 8 months, single parent mother. Diagnosed with CF at 4 years. Df 508 mutation. Growing pseudomonas since January 2002. Preferred antibiotic of Flucloxacillin, at a dosage of up to 9gm per day, not available. So maximum dose of Clarithromycin, which she can tolerate, recommended – alternatively a regime of 4 days in 14 might be more affordable. Parent from Lutsk made special appeal for financial help and video interview with her was recorded. Her written appeal is at appendices
Many children with CF have poor dental condition; if such services in Ukraine are free, they should be used.
Another parent’s view of care of a 10 year old CF boy was the subject of a video interview. They lived in Rovno, some 200km from Lviv.
Another couple, with a small girl CF patient, also came from Rovno. The father estimated that, in a population of 900,000, with just one diagnostic centre and a geneticist in charge, there were about 15-20 cases of CF. His personal view was that Doctors and parents were poorly informed about CF.
Encouraging signs that children in Lviv are being diagnosed earlier with CF and hence are in a noticeably healthier state.
Parents with Internet access were provided with the web site address for the RBH’s CF information and with the specialist nurse’s e-mail address.
The unaffordability of drug/enzyme treatment is illustrated again in a letter from Dr Bober prescribing treatment for a 3 � year-old boy, Ridvan. Cost of a nebuliser plus treatment, in this example with modest CREON needs, is 4245 Gryvna per year versus the family income of 2040 Gryvna.

About lunchtime, Dr Andreas Fuchs, Solvay Pharma Product Manager for Central and Eastern Europe, Dr Marina Moibenko, Product Manager for CREON in Ukraine, Olyena Gutsalo, Assistant Product Manager and Maxim, Public Relations officer together with Dr Ilarion Yaremchuk, Pharmaceutical Representative based in Kyiv, arrived to observe the clinic and attend the following day’s conference.

We were joined too now by Mrs Vera Viktorovna Novak, Chairman of the Kyiv CF Parents support group, 3 representatives of an embryo parents support group from Dnepropetrovsk and a team of 4 from Kharkhov, Eastern Ukraine – Olesya Botsyura, mother of a 4 year-old CF child, another parent, and two doctors. They had recently formed a new parents’ support group in Kharkhov, been registered as a charity and membership has grown quickly to 36 parents and 4 doctors. Olesya commended the medical support provided but considered that the Doctors had insufficient information on CF. She was provided with a copy of the RBH Guidelines and several CF Trust publications.

DAY 5: LVIV. CONFERENCE

Friday 26^th April. The conference attendance was about 100, of whom the vast majority were doctors or geneticists. Despite our request that nurses, physiotherapists and parents should be well represented, there was no specialist physiotherapist or nurse in the auditorium and just some 6 parents present. However, 3 of the parents were chairmen of parents’ support groups and more than compensated, by the end of the conference, for the relative lack of parents by their emotional and heartfelt speeches.

The project manager had a 5-minute “slot” and spoke in Russian (This was quite acceptable to the conference and saved some interpreting: however, Ukrainian is very much the preferred language. Memories of Russian and Soviet military actions and other repressive actions linger in the memory). Apart from thanking sponsors, organisers etc, his main message was one of encouragement to the parents’ support groups; to be really active to improve the care of their children and to fight for more affordable drugs.

Dr Rosenthal had been allocated a “prime slot”. In order to emphasise the key role of the specialist CF nurse, he soon handed over to Jacquie Francis. This no doubt surprised a rather “academic” audience, – nor was there any disguising her Jamaican roots! Jacquie lucidly described her job and its pivotal influence. Dr Rosenthal then returned to the podium. He underlined Jacquie’s role, stressed the enormous value of physiotherapy and of the team approach. He then invited the audience to challenge his thinking. Questions were numerous.

One of the most interesting questions concerned openness with children and families about imminent death. Dr Rosenthal believed that total openness should be the approach. Fear of death was worse than death itself. It was no use trying to deceive children and usually they had quite specific wishes, once they knew that death would come soon. It was the RBH policy to comply with such wishes if possible. It was also policy to make death as painless as possible, using morphine, which in itself might hasten death. It seemed that this approach caused some difficulties on the Ukrainian side – perhaps insufficient morphine supplies to enable death always to occur without pain.

Dr Bober presented a paper “Clinical and Social aspects of CF in the Western Region of Ukraine and ways of solving the problems”.

Dr Halyna Makhuk’s presented a paper on the results of genetic analysis of local CF patients entitled ” The mutation analysis of CFTR gene among CF patients from Western Ukraine”.

Dr Jarema Vosnitsa’s paper described how the organisation had changed and improved over the past year. In particular, he had asked the Regional Health Authority to improve the knowledge of CF in (smaller) local hospitals.

A translation into English of Dr Olga Liga’s paper about the kinds of infection found with CF patients and the antibiotics used is not held. In the brief time that slides were screened, the proportion of patients with bacterial infections was: –

Staphylococcus Aureus 42.2%
Pseudomonas Aeruginosa 26.7%
Haemophilus Influenzae 8.8%
Other bacteria 22.3%

Dr Andreas Fuchs described Solvay’s support of CF patients and involvement in CF in many ways. Amongst other matters, he said Solvay was investing in a Ukrainian CF information web site and was making a cartoon film about CF. He was supported by Dr Marina Moibenko who spoke about CREON.

Emma Dixon gave a presentation about physiotherapy as applied to CF patients as well as a practical demonstration.

Lauren O’Shea gave a presentation on diet, relevant to Ukrainian children and emphasising the importance of a high fat diet. (This was described by Dr Bober as a “revolutionary” lecture – saying that she agreed with the advice and had been trying in vain to get the same message across).

The Lviv team had prepared a press release and invited the press to attend the conference. The local TV Company continued to shoot material for their film.

After a buffet lunch, sponsored by Delta Medical, the last part of the conference was for discussions and statements.

On behalf of Solvay, Dr Moibenko said Solvay would strive at Government level (see comments above about pre-conference meeting) to have CREON classified as a “life-dependent” drug and that consequently it would be available to CF patients free of charge.

Regret was expressed that key Government officials, especially Mrs Moiseyenko, Head of the Department responsible for the health of mothers and children in the Ministry of Health in Kyiv, had not after all been able to attend.

Chairmen of parents’ support groups sought the help of the press in their campaign and expressed the hope that Solvay would also back them. They collectively hoped that the formation of a national organisation, akin to the UK’s CF Trust, was not far away.

Dr Fuchs said his company recognised the value of physiotherapy in the treatment of CF and would be offering funding to reinforce the training given this week by Emma Dixon. He would be in touch shortly with specific proposals.

Finally, tribute was paid to the invaluable and superb contribution of Dr Igor Hritsyuk, the team’s interpreter for the week, both in clinics and at the conference. Without his fluent command of English, his medical competence and his knowledge of medical terminology in both languages, very little could have been achieved.

DAY 6: IN LVIV

Saturday 27^th April. A meeting was convened at the Grand Hotel to draw conclusions, agree a way forward on a report of the programme, to consider how the effectiveness of the programme might be monitored and to consider plans for the return visit to UK.

These general points arose: –

The first substantive conference on CF in Ukraine had been achieved
Physicians from many parts of Ukraine had attended the conference
The visit by the RBH team had generally supported local care; this was psychologically important for both doctors and patients
Lviv treatment of CF will pay closer attention to the techniques recommended by the RBH physiotherapist
Interest in the organisation of care in UK; not just medical aspects.
The pleasing observation that younger CF children are generally in good health, whilst 10-11 year olds are quite sick – reflecting recent improvements in care at Lviv
Conclusion that Lviv is well suited to be a “Centre for CF care” – maybe alongside two other centres in Ukraine at Odessa and in Kyiv.
If Lviv becomes a regional CF centre, then Dr Bober and her team should consider holding clinics in 3 other locations, probably 3 times per year – maybe Ternopol, Ivano-Frankovsk and one other place
By Emma Dixon, a good reaction to advice on physiotherapy at the Lviv hospital and it would be sensible to return and consolidate the situation.
It would be very difficult in Ukraine to find or train a nurse to match the role played by Jacquie Francis at RBH, noting that Jacquie mentioned the availability of an appropriate 2 week course at RBH
Dr Bober thought she could identify a Lviv physiotherapy “twin” to Emma Dixon.
More parents and nurses ought to attend any future conference
Jacquie planned to write a special edition of the RBH newsletter about the visit to Ukraine and offered to send it to Olga Hinka
As far as educational material supply to the Lviv specialists is concerned, it was provisionally agreed: –
1. Guidelines on CF care at RBH – to be translated into Ukrainian and Russian and made available to Doctors, medical training institutes and families (Achieved January 2003). See the Russian translation here: Guidelines on CF care at RBH.pdf (warning: 700kb file)
2. A leaflet to be produced in Ukrainian on diet
3. A leaflet to be produced in Ukrainian on physiotherapy.
4. The CF Trust video on use of physiotherapy, subject to CF Trust agreement, to be dubbed into Ukrainian (Achieved Autumn 2002)
5. The Lviv TV and Radio Station programme to be copied onto videocassettes and again given wide distribution. (Achieved Summer 2002)
6. Dzvin (Olga Hinka) will produce posters, based on CF trust designs, and will submit cost estimates for design and printing.

MONITORING.

We should build on the conference paper by Dr Bober with its statistics.

The following indicators might be adopted: –

Age at diagnosis, noting that presentation at centres other than the regional centre would have to be taken into account
Improvements in physiotherapy technique and diet should lead to increased life expectancy.
Organisational changes might be quantified for value achieved
Increased availability of information – perhaps monitored particularly by parents’ support groups
The number of parents’ support groups
The ratio of family income to costs of care.

We proposed that, using these indicators plus any others considered useful, Dr Bober and team might report progress in 6 months’ time.

VIDEO RECORD OF THE VISIT.

In excess of 15 hours of team activity has been recorded, including clinics, consultations and a range of interviews. This will be edited. It may be used to support the report but is more likely to be used to encourage support for future programmes of this nature. Some material is likely to be offered to local British TV stations.

RETURN VISIT TO UK

The timing of the visit – provisionally it would suit the Lviv team to come in September/ October; October is less convenient for the RBH team.

In due course, the return visit took place between 26^th October and 2^nd November. Notes for the UK hosts of the Ukrainian guests were promulgated as follows: –

GUIDANCE ON VISIT BY UKRAINIAN MEDICAL DELEGATION.

Child Health International (CHI), formerly International Integrated Health Association, based in Winchester is the manager of this programme. Tony Wolstenholme is the CHI project manager. The project is funded by the Department of International Development (DFID) as part of a programme entitled “Health and Social Care Partnership”, which is targeted to improve health care and social welfare in Russia, Ukraine, Belarus and Moldova. The Ukrainian partner in the programme is an organisation named DZVIN, based in Lviv, Western Ukraine.

This project, specified as UKR 006, has the following objectives: –

To improve awareness in Ukraine of cystic fibrosis
To improve CF diagnostic techniques
To improve treatment administered by parents of CF children, notably physiotherapy
To strengthen the role of parents’ support groups both in mutual support and in advocacy
To improve the care of CF children by the adoption of improved health services and in other ways, such as providing dietary recommendations

As a result of collaboration with and support from Solvay Pharma, based in Hanover, Germany the team visiting UK has been expanded. In particular, Mrs Raisa Moisyenko, Head of the Department for the health of mothers and children in the Ukraine Ministry of Health will participate in the visit and her costs and those of the physiotherapist in the team are being borne by Solvay Pharma.

Note: On 24^th October, Mrs Moisyenko had to withdraw from the visit and Dr Skopychenko, who had specifically planned to accompany her, also withdrew.

Their team, with brief details of their responsibilities, is: –Mrs Raisa Moisyenko:Head of the Department for the health of mothers and children in the Ukraine Ministry of Health, Kiev. Approximately responsibility equates with that of an Assistant Under Secretary of State.Dr Svitlana Skopychenko:General Manager, Solvay Pharma, Ukraine. Based in Kiev. PhD in gastroenterology.Mrs Vera Novak:President Designate of the All Ukrainian CF Trust – the equivalent to the UK Cystic Fibrosis Trust, whose incorporation is expected before the end of 2002. Currently President of the Kiev Association of CF parents and has a son aged 12 with CF. Based in Kiev.Dr Oleksandr Mindyuk:The Director (or Chief Executive) of the Lviv regional children’s hospital. He wishes to be briefed on the principles and organization of a main centre of specialist support. On his return to Ukraine, it will be his responsibility to lead the Western Ukraine CF Regional Centre.Dr. Jarema Voznytsia, Ph.D.:Head of Paediatric Department in Lviv regional children’s hospital. He is concerned to learn about all aspects of the care of children with CF, whether in hospitals or at the local doctor’s surgery or at home. Also interested in social welfare policy in respect of the children.Mrs Nadezhda Mel’nik:Deputy Head of the Health Department, Lvov Regional Administration. It will be her decision whether or not a CF Centre should be established in Lviv Region. She will be responsible for drafting the proposal to be endorsed by the local Administration to set up such a centre and the proposal would also cover the question (that is funding) of the provision of enzymes and drugs for CF children.Professor Oleg Hnatyeiko:Director of the Genetics Research Institute, Lviv. A senior specialist of national repute – he is also the President of the Ukrainian National Association of Medical Geneticists. He is understood to have significant influence at the Ukraine Ministry of Health.Svetlana Oryol:Physiotherapist, Lviv regional children’s hospital.Dr Ihor Hritsyuk:Consultant Endocrinologist, Lviv regional children’s hospital. Interpreter.

Lviv itself is a city of 830,000 inhabitants. If a regional CF centre were established in Lviv, it would be serving a population of 8-10 million. The incidence of CF in Ukraine is about 1 in 2000 births. Life expectancy is well below British standards and may be about 16.

PRINCIPLES OF THE VISIT.

The Ukrainian economy cannot support a health service akin to the NHS but the visit will strive to give the visitors an insight into the following general matters: –

How the NHS is organized
How health policy is developed
The role of Strategic Health Authorities and Primary Care Trusts
The funding of the service
Who pays for what in terms of medical treatment and drugs
The facilities of the NW London Hospitals Genetics Laboratory and its support in the diagnosis of CF
The role of an organization such as the CF Trust

And of more direct clinical interest: –

Experience of a CF clinic, probably at RBH, London, focusing on the importance of teamwork and the management of CF patients
Further physiotherapy training

THE PROGRAMME WAS AS FOLLOWS: –

Saturday 26^th October

Time Event Responsible Remarks

2135	Members of team from Lviv arrive at Heathrow T1 on Flt LO285	Project Manager	To be met with minibus
2220	Members of team from Kyiv arrive at Heathrow T1 on Flt BA883	Project Manager
2245	Mrs Svitlana Oryol leaves Heathrow for RBH Nurses’ Home	Michael Ridgway	Svitlana will remain at RBH for the week.
2250	Ukr team depart Heathrow for Winchester	Project Manager	In minibus
2355	Ukr team arrive Royal Winchester Hotel

Sunday 27^th October

Day for relaxation and sightseeing.

1800

Buffet supper party in Winchester to welcome Ukrainian guests

Monday 28^th October

0855-1100	Brief on organisation of NHS in seminar room, Royal Winchester Hotel	Mr Adrian Osborne, Communications Manager, Hampshire and Isle of Wight Strategic Health Authority	O/H projector available
1250	Leave Winchester and travel to Southampton General Hospital		Drs Mindyuk, Voznitsya with Dr Ihor Hritsyuk as interpreter plus PM only.
1330-1700	Attend cystic fibrosis clinic at SGH	Dr Gary Connett
1415	To Twyford Surgery		Other members of the Ukr team.
1430-1600	Brief on Twyford and Colden Common Practice	Adrian Kirsop	Serves about 8000 patients. Tel 01962 712202
o/c	Return to Winchester

Tuesday 29^th October

1015	Leave Winchester for Guildford	Project Manager	Probably only Mrs Moisyenko, Mrs Mel’nik and Dr Hritsyuk +PM
1130-1230	Meeting to discuss NHS framework and standards for child healthcare	Linda Wollam, Policy and Improvements Manager, Hampshire and Isle of Wight Strategic Health Authority	Probably only Mrs Moisyenko, Mrs Mel’nik and Dr Hritsyuk +PM
o/c	Return to Winchester
1455	Depart Winchester for Sutton Scotney
1515-1615	Visit to Naomi House Hospice for children	Pauline Swindells Jill Purkiss	Tel 01962 761532
1630	Brief on responsibilities of a Primary Care Trust	Karen Ashton, Director of Primary and Community Care, Mid Hants PCT
o/c	Return to Winchester

Wednesday 30^th October

0900	Depart Winchester for Bromley, Kent
1100- 1400	Visit to Cystic Fibrosis Trust and briefing on its role and objectives	Rosie Barnes, Chief Executive, CF Trust Janet Boxall, PA.	www.cftrust.org.uk
1400	Depart Bromley for Chartwell
1430-1700	Visit to Chartwell, Winston Churchill’s home	Judith Seaward	http://www.nationaltrust.org.uk/main/w-vh/w-visits/w-findaplace/w-chartwell.htm
o/c	Return to Winchester

Thursday 31^st October

0900	Depart Winchester for Royal Brompton Hospital, London
1100-1345	Management of cystic fibrosis	Dr Mark Rosenthal, Jacquie Francis
1345	Leave for Harrow
1445-1645	Visit to DNA Laboratory, Northwick Park Hospital, Harrow Brief on facilities and diagnosis of CF	Stewart Payne
o/c	Return to Winchester

Friday 1^st November

0845	Leave hotel for Royal Hampshire County Hospital, Winchester
0900	Meeting with Dr Foote, Consultant Paediatrician		Meeting at Northbrook Ward, Nightingale wing
1000	Meeting to discuss roles of the paediatric clinical psychologist and Community paediatric nurse.	Dr Peter Crowley, Principal Clinical Psychologist and Beverley Murray
o/c	Leave RHCH		Visit to Cystic Fibrosis Trust
1200	Visit to the Well House	Ruth Heeks	Complementary medicine
1600	Final project meeting to review outcome of visit.

Saturday 2^nd November

0445	Lviv team leave Winchester for Heathrow	Project Manager
0705	Lviv team depart London for Warsaw/ Lviv on Flt LO 286
1145	Kiev team leave Winchester for Heathrow
1425	Kiev team depart from London for Kiev on Flt BA 882

MAIN OUTCOMES

At the conclusion of the visit, these were the main outcomes: –

The effectiveness of the UK phase of the project is best summed up by these comments from Dr Oleksandr Mindyuk : –

“You managed to organise our visit in such a way, that it was not only useful, but very comfortable as well. It had overcome our expectations. You enhanced our enthusiasm and showed the way for improvement of medical and social help to children with Cystic Fibrosis, as well as to other groups of patients. We are prepared for the future work in a way that will make you satisfied.

We have unforgettable memories of your country and the British people.

Thank you once again. And please pass our gratitude to all whom we met, as well as to all the benefactors of our visit”.

The report by the Ukrainian team of the visit to UK, submitted to HLSP said: –

A team of Health Care Professionals from Ukraine, engaged in provision of medical care to children with Cystic Fibrosis visited UK between 26`^h October and 2″^d November 2002.

The delegation included: Dr. Oleksandr Myndiuk, Chief Executive of the Lviv Specialised Children’s Hospital, Dr. Yarema Vosnytsia, Head of the Paediatric Department of the named Hospital, Mrs. Nadiya Melnik, Deputy Head of the Lviv Regional State Administration, Prof. Oleg Gnateiko, Director of the Institute of Genetics and Hereditary Pathology, Dr. Ihor Hritsyuk, Consultant Endocrinologist, Mrs. Svitlana Oryol, physiotherapist, and Mrs. Vera Novak, Head of parents’ support organisation from Kyiv.

This visit was the second phase of a programme managed by Child Health International. The first phase took place in Spring 2002 with a visit of a group of Cystic Fibrosis experts from the Royal Brompton Hospital, London. It had an aim to promote awareness of Cystic Fibrosis among the whole population, as well as improve diagnostic capabilities of doctors and provide them with advise on treatment.

During 6 days the Ukrainian team was briefed on different aspects of the UK healthcare system, attended Cystic Fibrosis Clinics at the Southampton General and Royal Brompton Hospitals, visited Paediatric Department of the Royal Hampshire County Hospital in Winchester, the Cystic Fibrosis Trust in Bromley and the DNA Laboratory in NW London Hospital. Physiotherapist from Lviv Svitlana Oryol spent a week in the Royal Brompton Hospital studying physiotherapy techniques in children with CF.

At the summary meeting by the end of the visit all the participants expressed their deep satisfaction of this visit and programme in general.

Dr. Y. Vosnytsia: “After the visit of the UK team To Ukraine, with its repercussions in the media, we diagnosed a few new cases of Cystic Fibrosis. It is not unusual now that a mother comes to a doctor with a small child saying, “Doctor, my child is coughing for so long. I am afraid it might be Cystic Fibrosis. Please check him (her)”. The return visit overcame my expectations. I was deeply impressed by the team approach in work with patients in your hospitals, and that is worth implementing in our practice in Ukraine. I now know better what to do to improve our work in Ukraine and I am already building plans of how to do it”.

Dr. 0. Myndiuk: “This project was aimed to set-up a centre of excellence in CF in Western part of the Ukraine. I am proud to say this aim is achieved. Now it would be right to share our knowledge inside Ukraine, with other hospitals and health care professionals. We are thinking of creating a mobile unit capable of travelling to remote hospitals and providing patients with expert advice as well as medical staff with logistic help and teaching. We have people able to do this, but we are still lacking a lot of equipment, therefore we are keen to continue our co-operation with CHI”.

Mrs Vera Novak: We are about to create a nation-wide organisation in Ukraine, similar to the CF Trust in the UK. This visit strengthened my determination to push harder on our government to give higher priority to cystic fibrosis treatment”.

All the participants expressed their sincere gratitude to the project manager Mr. Tony Wolstenholme for wonderful organisation of the visit and all the trustees for the possibility to get acquainted not just with professional issues but with British culture and British lifestyle as well.

Thanks to the sponsorship of Solvay Pharma, it was possible to include a physiotherapist in the Ukrainian team for specialist paediatric CF physiotherapy training. Sarah Pike of the Royal Brompton hospital, London, provided this training.
By agreement with the UK Cystic Fibrosis Trust and with the assistance of Mrs Vera Novak, the CF Trust’s videocassette ” Today’s physiotherapy for Cystic Fibrosis” is being dubbed into Ukrainian with project funds and will become widely available in Ukraine.

By agreement with Solvay Pharma, the Royal Brompton Hospital’s “Clinical Guidelines for the Care of children with cystic fibrosis” – an 87 page document – has been translated into Russian and Ukrainian – the former paid for by Solvay and the latter achieved with the help of a US charity in Kyiv (the Ukrainian-American Birth Defects Program) – and will be widely distributed both to Doctors and to parents of children with cystic fibrosis (by Solvay Pharma).
By negotiation, the Lviv Television and Radio Company produced a half hour health programme on CF and has so far screened it twice in Ukraine. There is some prospect of the programme being screened nationally. A copy of the programme is held on videocassette.
Following an interview given to the Hampshire Chronicle newspaper group, the Southampton General Hospital (Dr Gary Connett) donated a spirometer for use at the Lviv Specialised Children’s Hospital – approximate value £1200. It has been installed in Lviv and is in use.
Partly as a result of this project and certainly with encouragement from CHI over many years, parents’ support groups have been set up and on 14^th December the formal establishment of an All Ukraine Association of Parents Support Groups was due to be celebrated. This should lead to much greater awareness throughout the population of CF and will enhance the parents’ capabilities to lobby for increased resources for the care of patients with CF.
During 2002, and particularly as a result of the CF conference in Lviv on April 26^th, many articles about cystic fibrosis appeared in the Ukrainian press.

Ukraine 2011

Background

CHI, with its partner at the time, Dzvin, undertook a major project with the Lviv Specialised Children’s Hospital in 2002. The collaboration took the form of a visit in April by a team from the Royal Brompton Hospital to Lviv and a return visit to UK by a Ukrainian team in November. At the end of 2002, we felt much had been achieved. The door was left open for continuing collaboration but the Lviv team decided they had seen enough to draw up their own development plans for improvements to CF care in the whole Western part of Ukraine.

Various proposals for follow on projects, possibly to include the entire Ukraine, came to nothing for various reasons; for example the Orange Revolution in late 2004 led to the dismissal of many staff in the Ministry of Health and we could not get approval for a visit. CHI’s attention turned to other projects, such as the one in Belarus. In June 2009, however, CHI received an appeal for help from the West Ukrainian CF association DZVIN in Lviv. This had been forwarded by the Director of the EuroCare CF project, David Sheppard at Bristol University. He knew we had worked in Ukraine and was powerless to respond directly as Ukraine is not in the EU.

CHI restored communications with Lviv – luckily, those who had taken part in the 2002 project were mostly still in post, including Dr Lyudmila Bober in Lviv, Dr Mark Rosenthal at RBH, CHI’s project manager, Tony Wolstenholme, and our invaluable interpreter/ translator Dr Ihor Hrytsyuk. This resulted in three visits as described below: two smaller visits from Ukraine to the UK, and a larger visit from the UK to Ukraine. Fuller details, including the programmes and reports, are included

Initial training at Royal Brompton Hospital, London, February and June 2011

The first step brought Dr Nataliya Rohovyk, a young CF physician and Katerina Yavna, Psychologist to the Royal Brompton Hospital. Both had adequate knowledge of English to undertake training at RBH. We sent them an invitation in November 2010 to them to come to UK; this allowed visas to be obtained, and flights and accommodation booked. They duly arrived on Sunday 20th February 2011. There is significant RBH documentation to be completed before training can begin.

Their programme can be seen below. As is often the case, we wished that their time at RBH could have been longer. But releasing them from their responsibilities in Lviv for extended periods is also a factor. It transpired that it would not be possible for Dr Rohovyk to return to UK before 2012 but it was feasible for Katerina Yavna to come back in June (within the validity period of her visa) to be at RBH from 18th to 29th June. Michele Puckey, Clinical Psychologist, kindly agreed to act as mentor to Katerina. The timing of Katerina’s visit was helpful too as it was on the eve of the departure of the RBH team to Lviv in early July, and so allowed some of the late planning of the Lviv visit to be completed with her in London.

Dr Rohovyk’s report of this visit and Katerina’s report can both be read here

CHI/ RBH visit to Lviv 3rd-9th July 2011.

Having agreed with our Lviv counterparts that a British team would visit Western Ukraine in mid year 2011, the first task was to choose the team’s personnel. Dr Mark Rosenthal would be the CF Consultant and the composition of the team became:

Dr Mark Rosenthal, Consultant in Respiratory Medicine/ CF
Emma Dixon, CF Physiotherapist
Pat Stringer, CF Specialist Nurse
Mary Jurd, CF dietician
Rosie Barnes, Parents’ Support Group Adviser
Tony Wolstenholme, CHI Project Manager

The overall programme for the week and full reports from individuals involved can be found here.

On arrival at the re-named Western Ukrainian Specialised Children’s Medical Centre. We were welcomed by the recently appointed Director of the hospital, Dr Andriy Synyuta. In the course of our discussions, he stressed the importance of mobilizing the parents (of CF children) to seek increased resources for CF care. By late morning, a joint clinic with Drs Bober and Rosenthal was underway and, after each child had been seen, the child and its parents had a dietary consultation with the team’s dietician, Mary Jurd. The dietary consultations were preceded by a visit to market in Lviv, accompanied by Katerina Yavna, to understand better the Ukrainan diet and to appreciate current food prices. Some typical food prices as of 3rd July in Lviv can be seen here.

The clinic and the dietary consultation extended until almost 19:00. After a short break, our hosts treated us to a very interesting tour of the historical parts of Lviv by night.

By Tuesday breakfast time, the British team was at full strength. Joint clinics for out-patients continued all day with separate physiotherapy and dietary consultations. Patients had travelled considerable distances to attend the clinics: as much as 1400km. Two families had come from the Carpathians, some 350km away. The children differed widely in age from a few months old to young adult (18½). All patients seemed to take adequate Creon, supplied at no charge. All day, in every scenario, there was a full and open exchange about the CF children’s conditions and ways to help them and their families. Language was not a barrier; Dr Ihor Hrytsyuk acted a chief interpreter but the local abilities of the CF staff to work in English is good: Katerina Yavna and Dr Nataliya Rohovyk are commended for their efforts!

Rosie Barnes and Tony Wolstenholme had a session with Oksana Darmoriz, President of West Ukrainian CF association DZVIN and Milana Skoryk about Parent Support Groups. Attention was drawn to all the information available at the (UK) CF Trust website and particularly a document there entitled “Standards of CF care“. Oksana and Milana asked if CHI could produce a list of low cost medications and antibiotics for use in Ukraine and some other countries. This will be investigated: what might be cheap in UK might not be cheap in Ukraine, or not registered for use in Ukraine.

Our hosts entertained us once more after work with a late night tour of Lviv but in a rather more humourous vein – a “Kumpel Tour“.

Wednesday was Conference Day, The conference was well attended by medical specialists, CF parents and covered by the local TV company, who interviewed Dr Rosenthal, Rosie Barnes and Tony Wolstenholme. In the morning the home team gave a series of presentations. The UK team took the stage in the afternoon, gave presentations (the topics had been agreed in advance) and answered questions. The presentations can be found in the links below. By common consent, this conference was successful and complemented the practical exchange of knowledge of the previous two days.

Presentations

H.Makukh, L.Bober, M.Tyrkus1, O.Luga, O.Hnateyko1, O.Munduk: Diagnostic challenges in Ukraine (English)
Liudmyla Bober: Organisation of Care for Children with Cystic Fibrosis (Ukranian) (English)
Emma Dixon: Airway Clearance in Paediatric CF (Ukranian) (English)
Rosie Barnes: The Importance of a Strong National Association (Ukranian) (English)
Mark Rosenthal: Cystic Fibrosis: (a) Diagnostic Dilemmas, (b) The New Problems (Ukranian) (English)
Emma Dixon: Airway Clearance in Paediatric CF (Ukranian) (English)
Mary Jurd: Dietary advice for young people with Cystic Fibrosis (Ukranian) (English)
Pat Stringer: A Co-ordinated Approach to CF Care (Ukranian) (English)

The day was far from over! As guests of Dr Bober and her team, we all boarded a small bus in central Kiev and set off on the 130km journey to the Carpathian mountains: to Zakhar Berkut in the village of Volosyanka. This was a fine opportunity to enjoy the scenery in the South Western region of Ukraine. It became increasingly rural: in the style of the houses, the number of cattle and horse-drawn carriages, the abundance of wild flowers. Once settled into our rooms at the Zakhar Berkut Tourist Complex (a large modern hotel), we were entertained to a splendid dinner and the festivities of a “Night before Ivan Kupala”! This Festival is the Feast of St John the Baptist – seehttp://en.wikipedia.org/wiki/Ivan_Kupala_Day. The latter mainly consisted of us gathered around a fire beside the valley stream invoking various spirits and all in pouring rain! It was a very friendly and rather late night! The rain had almost ceased the next morning but the mountains were shrouded in mist. We went up the mountain in the chair lift. Horse-riding was an option. Strolling about, chatting, admiring the profuse wild flowers all very relaxed and capped with a splendid lunch in the restaurant “Café-Koliba” Vysokii Verkh (high summit).

The party returned by coach to Lviv and there were some farewells and exchanges of deep-felt thanks; both for the programme of work and for the generous hospitality of our hosts, particularly for the Carpathians excursion.

Unfortunately, not all aspects of the visit went so well. It was initially hoped that this visit would include both Kiev (capital of Ukraine) and Lviv (where we had previous contacts in Western Ukraine). The Kiev part had to be cancelled at the last minute, leaving us with the inconvenience of extra travel but without the benefit.

Dr Svitlana Skopychenko is President of the “Ukrainian Association of help to patients with CF” (comparable in concept to the UK’s CF Trust). She was the Solvay Manager in the Kiev office in 2002, and had provided some background information about the Association and its future plans. Tony Wolstenholme (Project Manager) arranged to meet her while passing through Kiev en route to UK, but even this came to nothing because of a late train.

Project Manager’s final remarks.

First and foremost, as observed above, the most heartening features of the visit to Lviv were the improvement in the health of the children and the professional competence of the team led by Dr Lyudmila Bober.
The hospitality we were afforded in Lviv and in the Carpathians was superb.
It was disappointing that the Kiev leg of the project was cancelled at short notice.
It was a privilege to watch the RBH paediatric CF team at work: so caring, professional, dedicated and with good humour.
We shall try to bring a physiotherapist and a specialist CF Nurse from Lviv to RBH to learn more about these roles.
It requires more study and correspondence with Dr Svitlana Skopychenko to identify what help can be given to the Ukrainian Association of Help to CF Families.
The visit came in well under budget. Savings arose because of the generosity of our hosts and team members paying for themselves on a number of occasions.