{"id":2267,"date":"2021-08-18T15:28:54","date_gmt":"2021-08-18T15:28:54","guid":{"rendered":"https:\/\/childhealthinternational.org\/staging\/?post_type=te_announcements&p=2267"},"modified":"2021-08-18T15:28:54","modified_gmt":"2021-08-18T15:28:54","slug":"yaroslavl-online-conference","status":"publish","type":"te_announcements","link":"https:\/\/childhealthinternational.org\/staging\/announcement\/yaroslavl-online-conference\/","title":{"rendered":"Yaroslavl Online Conference"},"content":{"rendered":"

Russians use the term kinesitherapy, meaning physiotherapy plus exercise. This report by CHI Project Manager, Russia, Tony Wolstenholme covers the contribution by UK based CF physiotherapists, Tracey Daniels and Elizabeth Shepherd and how we prepared for the conference, ever mindful of what our Russian partners wanted from us.<\/p>\n

    \n
  1. Whilst the Russian CF service recognises the importance of kinesitherapy, there is a severe shortage of 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<\/sup> 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 \u2013 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 \u201ctrainers\/ educators\u201d. 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.<\/li>\n
  2. Russian kinesitherapy requirement.<\/strong> 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 \u201cin the can\u201d and, in due course, thanks to GOSH and the NHS Trusts at Glasgow and Leicester, we had sufficient video material.<\/li>\n
  3. The Russian kinesitherapy scenario.<\/strong> Using either Teams or Zoom, we compiled a list of questions for Professor Olga Simonova, who is the Russian kinesitherapy \u201cSupremo\u201d. Full details in russian can be viewed here<\/a>.<\/li>\n<\/ol>\n

    The English translation of Professor Simonova\u2019s email: –<\/p>\n

     <\/p>\n

    Dear Tony,<\/p>\n

    I am very pleased that you have agreed to participate with your colleagues in the Kinesitherapy Forum\/ Symposium.<\/p>\n

    We\u2019ll be pleased to work with you.<\/p>\n

     <\/p>\n

    We\u2019d like to ask you to make two presentations:<\/p>\n

     <\/p>\n

      \n
    1. A\u00a0lecture<\/strong>, a \u201ccommunication\u201d, slides (Powerpoint, possibly) \u2013 on this theme<\/li>\n<\/ol>\n

      \u201cWhat determines the choice of kinesitherapy technique?\u201d 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 \u00a0individual\/ 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 \u201cOur 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 \u201ccontra-indications\u201d 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\u2019s important: to tell us and show us that you yourselves \u00a0and your colleagues (in the MDT) regard as necessary\/vital and useful in the work of a CF physiotherapist!!!!! <\/em><\/p>\n

       <\/p>\n

        \n
      1. A\u00a0Master-class.\u00a0<\/strong>We\u2019d 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:\u00a0We 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.<\/em><\/li>\n<\/ol>\n

        \u00a0<\/em><\/p>\n

        A really big thank you for your positive decision to participate in the Forum!!!!!!<\/p>\n

        Let\u2019s stay in touch<\/p>\n

        I await your reply<\/p>\n

        \u201cYour\u201d Olga.<\/p>\n

         <\/p>\n

        Soon after this, Olga sent me a link to a 2 \u00bd hour kinesitherapy webinar, giving us some insight into Russian kinesitherapy.<\/p>\n

         <\/p>\n

          \n
        1. GOSH infant physiotherapy guide. <\/strong>As the lecture drafting got underway, Tracey flagged up the significance of the GOSH guide \u2013 for continuous assessment of a CF infant\u2019s 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.<\/li>\n<\/ol>\n

          \u00a0<\/strong><\/p>\n

            \n
          1. Further research into Russian CF kinesitherapy. <\/strong>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.\u00a0<\/strong>We had still further questions. Here you can see our questions and the replies from Olga Simonova and Natasha Kashirskaya:<\/li>\n<\/ol>\n

            Dear Tony,<\/p>\n

            Thank you for such a detailed letter\u00a0and careful preparations for the lecture.<\/p>\n

              \n
            1. I discussed with Olga Simonova and she also thinks that translation of the GOSH Infant\u00a0physiotherapy document will be very useful for both\u00a0families and specialist. In some areas we still don\u2019t\u00a0have any\u00a0CF physiotherapy specialists so parents should organise\u00a0everything themselves.\u00a0We will ask Olga Pylaeva from\u00a0\u00abOstrova\u00bb to help with translation (she is now on vacation)\u00a0and Olga Simonova\u00a0will be a scientific\u00a0editor of the text.<\/li>\n
            2. I will ask Valeria Matis (from Volga Tours company)\u00a0to check that the lecture is recorded in time you are ready (perhaps on Monday 2nd or Tuesday 3rd. how you wrote in your letter).<\/li>\n
            3. Let\u2019s see what will be available as video materials.<\/li>\n
            4. I will answer on some of your questions from September 30th letter. Sorry we didn\u2019t do it in time.<\/li>\n<\/ol>\n
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              1. 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?\u00a0(So that we are ready for live questions and answers).<\/li>\n<\/ol>\n

                 <\/p>\n

                – 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\u2019t change\u00a0to the Winter time. Is this fine if you have to join us at 8:00 your time?\u00a0\u00a0\u00a0\u00a0<\/em><\/p>\n

                 <\/p>\n

                  \n
                1. 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”.<\/li>\n<\/ol>\n

                   <\/p>\n

                  –\u00a0As far as I know we will have a simultaneous translation so Liz and Tracey can talk the whole hour.\u00a0<\/em><\/p>\n

                   <\/p>\n

                  iii.\u00a0Do Russian Doctors\u00a0prescribe<\/u>\u00a0a regime of kinesitherapy for each CF patient\u00a0or 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.<\/p>\n

                   <\/p>\n

                  – If the physiotherapist is available in the CF centre so, of course, he\/she decides what to use. For example in Olga\u2019s centre, in Elena Kondratyeva\u2019s centre, in Yaroslavl CF centre, and in several others. In some CF centres the doctors have to choose what type of\u00a0physiotherapy to do.<\/em><\/p>\n

                   <\/p>\n

                    \n
                  1. 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?<\/li>\n<\/ol>\n

                     <\/p>\n

                    – Yes, you are correct.\u00a0<\/em><\/p>\n

                     <\/p>\n

                      \n
                    1. We would like to have a short resume of commonly used medications for respiratory infections in 2020 for Russian CF patients. Is Kaftrio\/\u00a0 Trikafta\u00a0(US) available in Russia?<\/li>\n<\/ol>\n

                       <\/p>\n

                      – We use inhaled Tobramycin and Colistin, very rare is Aztreonam. The last is not registered in Russia. <\/em>The oral and iv courses\u00a0of antibiotics comply with ECFS standards of care. Unfortunately only some of our patients are able to have the new CFTR modulators\u00a0treatment. We expect that at the end of November 2020 the first drug \u2014\u00a0Orkambi will be registered in Russia. But it is still a big question as to whether the\u00a0Ministry of Health can find the funds to pay for it.\u00a0\u00a0\u00a0 \u00a0<\/em><\/p>\n

                       <\/p>\n

                      vii. I saw therapy vests in 2013 in Moscow ….. are vests widely used in Russia? Who pays for them?<\/p>\n

                      – Vests are not widely used because of the price. Parents have to find the money from some (charitable) funds.\u00a0<\/strong><\/em>Also some time ago \u00abOstrova\u00bb bought several Vests for the new organised\u00a0physiotherapy CF\u00a0departments at various\u00a0 Russian CF centres (some kind of mini-gyms).\u00a0\u00a0\u00a0<\/em><\/p>\n

                       <\/p>\n

                      viii.\u00a0What are the most common forms of airway clearance that are used in Russia?\u00a0 Do patients have access to equipment such as PEP, oscillating PEP or the Vest?\u201d<\/p>\n

                      – I think you now have all this information from the presentations that\u00a0Olga Simonova sent to you.\u00a0<\/em><\/p>\n

                       <\/p>\n

                        \n
                      1. 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).<\/li>\n<\/ol>\n

                        –\u00a0Yes, please.<\/em><\/p>\n

                         <\/p>\n

                          \n
                        1. Do patients in Russia have access to nebulised medications such as Dornase Alpha, Hypertonic saline and inhaled antibiotics?\u201d\u00a0Which nebulisers are used (compressors or other devices such as eflows)?<\/li>\n<\/ol>\n

                          – Yes, our patients receive Dornase alfa (90%), Hypertonic saline and inhaled antibiotics.\u00a0<\/em><\/p>\n

                          Most of the patients receive Pari compressors and nebulisers\u00a0<\/em>http:\/\/pari.com.ru\/<\/em><\/a>\u00a0Unfortunately they are not provided by the Ministry of Health so the parents (parents associations and foundations)\u00a0and CF doctors have to organise a lot by themselves. \u00a0<\/em><\/p>\n

                           <\/p>\n

                          Best regards,<\/p>\n

                           <\/p>\n

                          Nataliya<\/p>\n

                           <\/p>\n

                            \n
                          1. Are CF MDTs feasible in Russia? <\/strong>Here is the text of an email I sent to Natasha Kashirskaya on 27th<\/sup> October: –<\/li>\n<\/ol>\n

                             <\/p>\n

                            Dear Natasha<\/p>\n

                             <\/p>\n

                            Many thanks for your comprehensive and helpful email of 25th October.<\/p>\n

                             <\/p>\n

                            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.<\/strong><\/p>\n

                             <\/p>\n

                            I am using the Russian CF registers for 2017 and 2018 and the Russian website, which lists Russian CF centres as sources of information.<\/p>\n

                             <\/p>\n

                            Advice for patients –<\/p>\n