Yaroslavl Online Conference – 2020 Timelines: Russia

View presentations from Child Health International Representatives below:

Home Care UK

Palliative Care in the UK

Physiotherapy for people with Cystic fibrosis

Physiotherapy for people with Cystic fibrosis – view in Russian

 

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.

  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 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.
  2. 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.
  3. 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”. Full details in russian can be viewed here.

The English translation of Professor Simonova’s email: –

 

Dear 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:

 

  1. 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!!!!!

 

  1. 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

“Your” Olga.

 

Soon after this, Olga sent me a link to a 2 ½ hour kinesitherapy webinar, giving us some insight into Russian kinesitherapy.

 

  1. 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.

 

  1. 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:

Dear Tony,

Thank you for such a detailed letter and careful preparations for the lecture.

  1. 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.
  2. 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).
  3. Let’s see what will be available as video materials.
  4. I will answer on some of your questions from September 30th letter. Sorry we didn’t do it in time.
  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? (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?    

 

  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”.

 

– As far as I know we will have a simultaneous 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.

 

  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?

 

– Yes, you are correct. 

 

  1. 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 is Aztreonam. The last is not registered in Russia. The oral and iv courses of antibiotics comply with ECFS standards of care. Unfortunately only some of our patients 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 as to whether the Ministry of Health can find the funds 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 (charitable) funds. Also some time ago «Ostrova» bought several Vests for the new organised physiotherapy CF departments at various  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. 

 

  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).

– Yes, please.

 

  1. 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 nebulisers 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.  

 

Best regards,

 

Nataliya

 

  1. Are CF MDTs feasible in Russia? Here is the text of an email I sent to Natasha Kashirskaya on 27th October: –

 

Dear Natasha

 

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: –

 

Dear Tony,

 

The problem with CF is that the CF care is not organised how it should be according to the ECFS Standards of care in most areas of Russia. This is still a huge problem for all of us… and the patients. We have argued the need with the Ministry of Health of Russian Federation for many years but with little success.

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 during 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.

 

Best regards,

 

Nataliya

 

  1. 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.
  2. 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.
  3. 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. 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.
  4. Record of kinesitherapy session. Valeriya, Volga-Tours, has agreed to provide a recording of the entire kinesitherapy session.
  5. 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

 

Dear Valeriya

 

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!

 

 

From Liz

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.

 

Dear Tony,

Just to echo Liz’s thoughts ……I hope to be able to help again with future work.

Tracey

From Dr Nataliya Matvyeeva of Yaroslavl

“Tracey charmed us all”.

Add all existing website links to presentations, English and Russian versions.