Activities update – 2021
Yaroslavl conference 12-13 November 2020 – Kinesitherapy.
Report by Tony Wolstenholme, (Project Manager, Russia)
Note: Russians use the term kinesitherapy, meaning physiotherapy plus exercise.
- Introduction. Whilst the Russian CF service recognises the importance of kinesitherapy, there is a severe shortage of trained practitioners. Arguably, in terms of collaboration with CHI, providing guidance and masterclasses is the top Russian priority. There was a tentative plan to organise masterclasses in St Petersburg in April 2020 and, when this had to be postponed owing to Covid 19, there was a plan to organise them around the 30th anniversary of the Russian CF service in late June with masterclasses in Moscow and Kazan. It was not to be. It became increasingly clear that we should consider delivering masterclasses virtually – and the opportunity was, in the end, realised at this Yaroslavl Forum. Elizabeth Shepherd, physiotherapist at UHS and Tracey Daniels, physiotherapist at York Teaching Hospital were our two experienced “trainers/ educators”. They deserve our wholehearted thanks for undertaking this responsibility with the extra burdens of Covid 19 never far away. We decided to pursue the virtual route early in July.
- Russian kinesitherapy requirement. We were asked to deliver a 45 minute lecture and a 45 minute workshop, during which kinesitherapy techniques would be demonstrated by video, preferably on young children, rather than adults. One task was to refine the purpose of the lecture and understand the Russian context, whilst we realised that the demonstrations could not be easily filmed from scratch. Tracey agreed to ask her colleagues what was already “in the can” and, in due course, thanks to GOSH and the NHS Trusts at Glasgow and Leicester, we had sufficient video material.
- The Russian kinesitherapy scenario. Using either Teams or Zoom, we compiled a list of questions for Professor Olga Simonova, who is the Russian kinesitherapy “Supremo”. This was her reply in Russian: –
я очень рада, что Вы согласились участвовать в Форуме и со своими коллегами по кинезитерапии в симпозиуме по кинезитерапии
мы будем рады поработать с вами вместе!
Мы бы хотели Вас попросить сделать два выступления:
- доклад, сообщение, слайды — на тему «Что определяет выбор метода в кинезитерапии?». Сделать акценты на «как кинезитерапевт подбирает или выбирает определенный метод? какие показания для каждого метода? как кинезитерапевт составляет индивидуальную программу занятий для больного? почему один метод подходит для больного, а другой метод не подходит? почему одному больному выбирают этот метод, а для другого — другой метод?» нашим докторам, кинезитерапевтам и родителям интересно узнать: какие критерии для кинезитерапевта являются определяющими для выбора того или иного метода! какие существуют противопоказания у каждого метода! какие дополнительные приборы вы применяете в кинезитерапии?!!!!! и важно: рассказать и показать нам все, что Вы с коллегами сами считаете нужным и полезным в работе кинезитерапевта!!!!!!
- Мастер-класс — это видео фильм на 40 минут, в котором ваш кинезитерапевт покажет отдельные методы и приемы на ребенке (или на разных детях) и прокомментирует: как правильно выполнять тот или иной метод особо отметим и просим сделать акцент на детей младшего возраста!!! это — всегда большая проблема для кинезитерапевта и для родителей!
Спасибо огромное за положительное решение участвовать в Форуме!!!!!!!!
The English translation: –
Dear (“Deeply respected”!!!) Tony,
I am very pleased that you have agreed to participate with your colleagues in the Kinesitherapy Forum/ Symposium.
We’ll be pleased to work with you.
We’d like to ask you to make two presentations:
- A lecture, a “communication”, slides (Powerpoint, possibly) – on this theme
“What determines the choice of kinesitherapy technique?” Could you explain with examples how a kinesitherapist selects or chooses specific techniques? What are the determining factors/ indications for the choice of a specific technique, again giving examples. Tell us how a kinesitherapist designs an individual/ specific programme of exercises for a patient. Give an example of one kinesitherapy course, which is appropriate for a patient, whilst it would be inappropriate for another. Why kinesitherapy treatments or courses may be ideal for one patient, whilst another patient may need quite different techniques. Professor Olga Simonova adds “Our doctors, kinesitherapists and parents are interested in knowing : What are the determining criteria, which the kinesitherapist must employ in determining which are the most appropriate courses or forms of kinesitherapy for each patient? What kind of “contra-indications” should one look for to rule out particular forms of kinesitherapy? What kinds of equipment or additional devices do you use in delivering (CF) physiotherapy? And what’s important: to tell us and show us that you yourselves and your colleagues (in the MDT) regard as necessary/vital and useful in the work of a CF physiotherapist!!!!! (Olga had 6 exclamation marks)
- A Master-class. We’d like a video film lasting some 40 minutes, in which a (UK) kinesitherapist demonstrates various techniques and procedures on a child (or several children), whilst simultaneously commentating how to execute such and such a technique correctly. Professor Olga adds: We would particularly comment and request that the patients are (really quite) young children. These are the patients that are a more serious problem both for the kinesitherapist and for parents.
A really big thank you for your positive decision to participate in the Forum!!!!!!
Let’s stay in touch
I await your reply
Soon after this, Olga sent me a link to a 2 ½ hour kinesitherapy webinar, giving us some insight into Russian kinesitherapy.
- GOSH infant physiotherapy guide. As the lecture drafting got underway, Tracey flagged up the significance of the GOSH guide – for continuous assessment of a CF infant’s condition and we decided to use its main algorithm in the lecture. We also recommended the translation of the guide into Russian as an essential tool for Russian parents. GOSH authorised the translation under the usual terms. This was agreed on the Russian side and Ostrova agreed to fund the translation. The Russian version is to be posted on both the main Russian CF website and on the Ostrova website. GOSH document is attached. Note: Ostrova is a Russian charity, based in St Petersburg, which provides strong support to the Russian CF service and Russian CF families.
- Further research into Russian CF kinesitherapy. I asked for and received a kinesitherapy powerpoint presentation by a kinesitherapist, named Matvyeev, St Petersburg and, after translation into English, shared it with Liz and Tracey. We received too a powerpoint presentation from Olga Simonova. We had still further questions. Here you can see our questions and the replies from Olga Simonova and Natasha Kashirskaya:
Thank you for such a detailed letter and careful preparations for the lecture.
- I discussed with Olga Simonova and she also thinks that translation of the GOSH Infant physiotherapy document will be very useful for both families and specialist. In some areas we still don’t have any CF physiotherapy specialists so parents should organise everything themselves. We will ask Olga Pylaeva from «Ostrova» to help with translation (she is now on vacation) and Olga Simonova will be a scientific editor of the text.
- I will ask Valeria Matis (from Volga Tours company) to check that the lecture is recorded in time you are ready (perhaps on Monday 2nd or Tuesday 3rd. how you wrote in your letter).
- Let’s see what will be available as video materials.
- I will answer on some of your questions from September 30th letter. Sorry we didn’t do it in time.
i. How long should the lecture be (excluding questions and answers)?And what time of day (UK time or Yaroslavl time) do you think the lecture will be? (So that we are ready for live questions and answers).
– In the attached file is a Preliminary Program. The physiotherapy session will be on November 12th from 11:00 till 14:00 Moscow time. Unfortunatelly we have now 3 hours difference since Russia doesn’t change to the Winter time. Is this fine if you have to join us at 8:00 your time?
ii. Both Liz and Tracey will take it in turns to give a section of the lecture. We propose that they speak slowly and clearly in English, then pause. During the pause, the interpreter will repeat the text in Russian – and a summary of the text in Russian should appear as a sub title on the slide. This means, in effect, that a one hour lecture will really only be a half hour lecture – plus translation. But it will give all listeners 3 chances to “hear” the “message”.
– As I know we will have a simultanius translation so Liz and Tracey can talk the whole hour.
iii. Do Russian Doctors prescribe a regime of kinesitherapy for each CF patient or does the physiotherapist decide on which treatments to use? In UK, the physiotherapist determines the regime, perhaps whilst the consultant stands beside her …. but the physiotherapist is the expert.
– If the physiotherapist is available in the CF centre so, of course, he/she decides what to use. For example in Olga’s centre, in Elena Kondratyeva’s centre, in Yaroslavl CF centre, and in several others. In some CF centres the doctors have to choose what type of physiotherapy to do.
iv. At the Yaroslavl conference, we think that the main target of the lecture is kinesitherapy practitioners. A secondary target is CF physicians and, on the same level as the physicians, the parents, who will be the leading practitioners of kinesitherapy in the home environment. Is this correct?
– Yes, you are correct.
vi. We would like to have a short resume of commonly used medications for respiratory infections in 2020 for Russian CF patients. Is Kaftrio/ Trikafta (US) available in Russia?
– We use inhaled Tobramycin and Colistin, very rare in Aztreonam. The last is not registered in Russia. The oral and iv courses of antibiotics according to the ECFS standards of care. Unfortunately only several of our patints are able to have the new CFTR modulators treatment. We expect that at the end of November 2020 the first drug — Orkambi will be registered in Russia. But it is still a big question if the Ministry of Health is able to pay for it.
vii. I saw therapy vests in 2013 in Moscow ….. are vests widely used in Russia? Who pays for them?
– Vests are not widely used because of the price. Parents have to find the money from some funds. Also some time ago «Ostrova» bought several Vests for the new organised physiotherapy CF departments in different Russian CF centres (some kind of mini-gyms).
viii. What are the most common forms of airway clearance that are used in Russia? Do patients have access to equipment such as PEP, oscillating PEP or the Vest?”
– I think you now have all this information from the presentations that Olga Simonova sent to you.
ix. Should we include the importance of exercise in the lecture? (I am conscious that one Ostrova initiative has been to provide some kind of mini-gym at many CF centres around the Russian Federation).
– Yes, please.
x. Do patients in Russia have access to nebulised medications such as Dornase Alpha, Hypertonic saline and inhaled antibiotics?” Which nebulisers are used (compressors or other devices such as eflows)?
– Yes, our patients receive Dornase alfa (90%), Hypertonic saline and inhaled antibiotics.
Most of the patients receive Pari compressors and nebulaizers http://pari.com.ru/ Unfortunately they are not provided by the Ministry of Health so the parents (parents associations and foundations) and CF doctors have to organise a lot by themselves.
- Are CF MDTs feasible in Russia? Here is the text of an email I sent to Natasha Kashirskaya on 27th October: –
Many thanks for your comprehensive and helpful email of 25th October.
With Liz and Tracey, we are, as you know, preparing a kinesitherapy lecture for the Yaroslavl Forum. We can describe how CF physiotherapy is organised and delivered in UK but we are also trying to understand how our experience in UK might need to be adapted in the Russian Federation. It is obvious to you what an enormous country the Russian Federation is – the distances are colossal …. and the numbers of CF patients across the whole of the country are not large. In very simple terms, UK is a small country with over 10,000 CF patients; whilst Russia is vast with little more than 3100 CF patients. So we come to the “formula” for manning MDTs in the UK – see slide attached.
I am using the Russian CF registers for 2017 and 2018 and the Russian website, which lists Russian CF centres as sources of information.
Advice for patients –
From this, it seems to me that only Moscow and Moscow Oblast (398 + 223 patients) and St Petersburg and Leningrad Oblast (150 +29 ) have the numbers of CF patients which can justify well-manned MDTs. They have numbers, which allow too for adult and child specialist CF centres as well as expert genetics support. Anything less than 100 CF patients – see the table attached – means limited medical skills …. probably.
Take Kazan, Republic of Tatarstan as an example….. a total of 118 patients, of whom 28% are adult …. so 72% child/ paediatric. Scale upwards to the table (attached) column for 150 patients ….. I wonder what the actual staffing levels are?? In the UK, we would expect at least 1 consultant, one experienced CF Doctor, 3 kinesitherapists, 2 – 2.5 nurse specialists, 1 dietician, 1 psychologist.
I have worked in Eastern Siberia and the Russian Far East …… I see there are 32 CF patients, of whom 5 are adult in Khabarovsk Region ….. where is their specialist CF Centre ….. or CF patients, say, in Chita or Blagoveshchensk? How far do they have to travel to get expert care?
I have found it difficult to see just how many specialist CF centres there are in the Russian Federation – adult and child ……. it looks to be about 50 altogether …. with relatively few specialist adult centres …. Moscow, St Petersburg, Ekaterinburg, Izhevsk, Nizhevartovsk, Novosibirsk …any more?
Lastly, there seem to be some CF centres without parent support groups. And some CF parent support groups are in larger disability groups or charities……
I’d like your advice …or a chat to help me understand CF care in some of the more isolated areas of the Russian Federation.
Natasha Kashirskaya replied: –
The problem with CF is that the CF care is not organised how it should be according to the ECFS Standards of care in the most areas of Russia. This is still a huge problem for all of us… and the patients. We all these years are nearly in the fight with the Ministry of Health of Russian Federation.
I am not sure that you need to find all the details about the CF service in Russia now, before the Forum. This can be done for the future collaboration (planned work with Elena Kondratyeva and Ostrova) in the field of physiotherapy any time later.
Anyway we can talk via Skype tomorrow or on Friday.
- Translation of lecture slides into Russian. As the interpreting services at the Forum were clarified, I became more concerned about how the kinesitherapy lecture would be seen and heard by the CF parents – whilst they could hear the commentary in Russian, it was proposed that the slides would be projected in English only. In a first step, it was agreed that the GOSH infant assessment tool, slide 14, would be translated into Russian. The expanded slides 15, 16 and 17 were then added. I made my case for total translation and Natasha “turned up trumps” by persuading Pari to translate the whole presentation – and a good job they did.
- The workshop or video presentation. Here the complication was that the combined videos added up to a file of 236MB. Far too big for normal computer to computer transfers. We resorted to using Dropbox – but late in the day and as the number of Covid cases was increasing…. we were under pressure. Thanks to the always willing help from Valeriya at Volga-Tours, the workshop was successfully recorded at 1800 Moscow time on 10th November. The videos did the job but were more thumbnail size than full screen – we just ran out of time to optimise their projection.
- The kinesitherapy symposium 12th November. We joined the zoom meeting at 0745 GMT (1045 Moscow time). Liz and Tracey’s work – pre-recorded – ran very smoothly while Olga Simonova and I acted as moderators. There were plenty of questions. We had the sense that all had gone well. Copies of the powerpoint lecture in English and Russian are attached. Link to ppts x 2. If you wish to see the workshop videos, please ask me and I’ll provide a link to dropbox. Below are extracts from the emails that flowed between us later that day. With Jim’s agreement, on behalf of CHI I sent a bouquet of flowers to Liz and to Tracey.
- Record of kinesitherapy session. Valeriya, Volga-Tours, has agreed to provide a recording of the entire kinesitherapy session.
- Post Forum ….
From me to Liz and Tracey
Dear Elizabeth and Tracey
It went very well – many thanks. There was real appreciation not only of the presentations but the follow-up Q and A. Professor Olga Simonova’s words about your presentations were ” Fantastic and stupendous”.
As Olga said towards the end of Q and A, the Q and A could have gone on much longer. I have offered another Zoom session at some time in the future ……
From me to Valeriya, Volga_Tours
All seemed to go like “clockwork” this morning – Well done …. Bravo!
I found the whole session very interesting. I hope it was helpful both to medical personnel and to the parents of cystic fibrosis patients. I could not see the presence of parents on my Zoom screen – were there many parents participating?
Is it possible to send me a recording of the session or a link to it? If not the whole session then the lecture and workshop given by Elizabeth and Tracey plus the Questions and Answers session?
I do compliment your interpreter – he was excellent this morning!
I’m so pleased that this was successful and that it seemed to answer some of the questions that they have about physiotherapy in Cystic Fibrosis. It has been a real pleasure working with both you and Tracey and I have loved being involved with this. This is clearly something that you have worked very hard to achieve and it has paid dividends. I do hope that the rest of the conference has gone well too. It is lovely to be part of something that is helping to improve care and hopefully improve patient’s life expectancies as this is the reason that you become a CF physio. They seem very keen to learn and develop their service and I hope that they are able to continue this work going forward.
I look forward to helping CHI again in the future.
From Tracey to me.
Just to echo Liz’s thoughts ……I hope to be able to help again with future work.
From Dr Nataliya Matvyeeva of Yaroslavl
“Tracey charmed us all”.
Part 2 – CF care at home, advice about CF to schools and CF palliative care.
- Introduction .Judi Maddison, Paediatric Nurse specialist had spoken at the 2019 Forum in Yaroslavl on her role as a CF Nurse specialist. This year, Natasha Kashirskaya broached the subject via skype of more advice from Judi at this year’s 2020 Forum. The topic was principally CF care at home and specifically enabling IV antibiotics at home. I understood that there were legal constraints in the Russian Federation on delivering healthcare in general in the patient’s home so that the advice sought from Judi/ CHI should include the legal authority and indemnity insurance for home visits. We began designing the talk in early August. Natasha requested that we might create a video of one or more home visits but that had to be ruled out owing to the Covid pandemic and limited access to CF patients’ homes. A bit later, Natasha asked some questions about palliative care for paediatric CF patients.
- Dr Susie Wilkinson. I made contact with Dr Susie via a friend in Winchester. She is a retired palliative care expert (though all contact with her suggested that she is extremely active). Currently she is the Executive Director of the Centre for communication skills and International liaison lead of a Palliative Care Unit at the University of Liverpool. Relaying this information to Natasha, Dr Susie was invited to participate in a palliative care conference in Moscow in early October and in the Yaroslavl Forum. Susie declined as she was already fully committed on the dates concerned. This led to Judi assuming responsibility for responding to palliative care questions.
- See these links for more on Dr Wilkinson.
- The connection Kashirskaya to Wilkinson led Natasha to report the contact almost direct to the Minister of Health in Moscow. However, it was a 2 way process. With Professor Ellershaw as Chairman of an International Collaborative project on palliative care with 24 participating countries but not including Russia, Ukraine, Belarus or any former CIS country, Susie was enthusiastic about Russia joining the project.
- On 28th September, Natasha wrote this to Susie: –
We will have a special symposium that will be dedicated to the palliative care in CF.
If you yourself are able to participate in our event the Russian specialists would like to hear from you or anyone from your colleagues the answers to the following questions:
– At what age and with what problems do you take children with cystic fibrosis under palliative care in England?
– What specialists and what kind of services are included in the home care?
– How does the interaction of specialised CF care and palliative services go: who does what, who provides what (products, drugs, equipment, consumption)
– if the CF child is on lung ventilation – who is involved? From whom the child receives the lung ventilators? Who is responsible for the technical service and maintenance?
– if the CF patient receives the treatment via central venous catheter – who helps the patient at home? iv antibiotic treatment – at home or in the hospital? If the child is on palliative care will he/she still be receiving the iv antibiotics?
– How the transition from children’s to adult service is organised?
- On 30th September, Natasha wrote this to Dr Susie: –
And, just for information. On October 6-7th there will be an online Palliative care Congress with international guests «The annual conference with international participation “Development of palliative care for adults and children” of the Russian Hospice Care Professionals Association». If you have time you can have a look. The site is in both languages in Russian and in English. https://www.pro-hospice.ru/vrachebnaya-konferenciya And among the foreign lecturers I can see at least one from London Stephen Robert Connor, PhD.
- Dr Susie and the project are mostly concerned with adult palliative care whilst Natasha and her Russian CF colleagues focus on paediatric palliative care – and Judi took on the questions above in para 5.
- Judi’s presentations. By 8th October, Judi’s powerpoint presentation on CF Care at home was ready to be sent to the Forum managers – and I thought for translation into Russian. However, translation was not undertaken. A few days later, Judi also sent a palliative care presentation to Volga Tours. I have not seen this or any translation but hope it answered some of the Russian questions. I think but do not know that Judi began a period of annual leave about 10th October which only ends on 16th November – during that time, I was unable to make contact with her; but Volga Tours assured me that they had safely recorded both her talks and that, at the Forum, they would be simultaneously interpreted into Russian. I recommended translation of her slides into Russian mainly so that Russian CF parents would have the best chance of understanding Judi’s presentations …. And not be confused by hearing a Russian voice but seeing visual aids in English.
- Judi’s powerpoint presentation on CF care at home is attached.
For Further detail, please see links below:
January 2017 – Doctors from Moscow, Rostov on Don, Omsk and Krasnoyarsk have signed up for the RBH online course ‘Managing the care of children and adults with cystic fibrosis’ and we expect them to visit the UK for a practical session on completion.
The ‘Russian School of Cystic Fibrosis’ took place in Moscow at the end of February 2016. The two day ‘master class’ was given by a team from the Royal Brompton Hospital sponsored by CHI.
It covered the basics of good CF care as practiced in the UK, the benefits of new-born screening, airway clearance techniques, nutrition and the use of pancreatic enzymes, transition from pediatric to adult care and diagnosing and treating difficult cases. Doctors from nine regional centers as well as three Moscow clinics attended. Twelve of them presented cases for review and discussion with the visiting multi-disciplinary team.
For the full visit report, click here.