Anna (left), psychologist Oxana (centre) & Marina (right) hold crisis talks to decide what to do the day I went missing.
Anna Sonkina was one of the first doctors to join the project. She previously worked in paediatric palliative medicine in Moscow then studied for the Diploma in Palliative Care in Cardiff . We had first "met" when we Skyped each other a few weeks before and she invited me over to participate in the training weekend. Anna is passionate about improving healthcare in general for Russian people and MND patients especially. Since the dismantling of the Soviet Union 20 years ago, much of the old culture still exists in the medical world - paternalism, patronage to those in high office in government. Under communism, doctors' prime duty was to the State. Anna points out that Russia lacks professional bodies such as the UK's General Medical Council so that there is a lack of consensus over the ethical obligations for doctors in their practice. Continued registration as a doctor depends on keeping your nose clean with government authorities who are naturally conservative in attitude.
There is an overriding obligation for doctors in Russia to preserve life at all costs. The unspoken threat if this isn't practiced is loss of livelihood and jail. In relation to MND, this means that patients admitted to hospital in respiratory failure must be ventilated with the subsequent massive logistical, financial and practical problems this brings with it. Patients, in effect, don't have a choice. Ironically, doctors are keen to discharge patients from hospital as soon as possible after such interventions, knowing that little or no provision for looking after them is forthcoming through the State. Family, if there are any, are left to pick up the pieces without support in increasingly stressful circumstances without any certainty over the future. It is this gap which Anna and her colleagues are aiming to fill.
We went to see Yuri, a man in his 40's being solely looked after at home by his wife. He was emaciated through inability to swallow and struggling to breathe. He was finding it difficult to tolerate a ventilator provided by the project. He looked frightened.
Having no strength to turn in bed, he relied on his wife to do this and everything else for him. They were obviously both shattered. Anna had suggested Yuri take regular pain-relieving tablets - paracetamol and tramadol - to relieve the background discomfort of being unable to move but this didn't seem to be enough. In the UK, it is usual practice to prescribe low-dose morphine in these circumstances which invariably turns an intolerable situation into a much more bearable one. As mentioned before, morphine can only be prescribed for cancer patients so Yuri and his wife had to suffer unless higher authorities could be persuaded on appeal. Between them, Anna and Marina made many phone-calls and emails over the next few days to try and find a way through the red tape to someone who would sanction this. There being no official route for this, it was very much trial and error.
As a visiting doctor from the UK, Yuri and his wife were keen to know if there were any cures for MND available over there. I said that although there was a drug , riluzole, which modestly slowed down the progress of the disease, sadly, much research since this hadn't come up with anything effective. Yuri reflected that even there was something, it was too late for him.
I remember feeling awful for the Team who not only didn't have access to riluzole, the only symbol of hope in an otherwise hopeless situation, but to adequate symptom control medications. What they do give is themselves in circumstances where other professionals appear to have deserted patients and their families. I felt very humbled.
Interior detail in the Convent building
We returned to the Medical Centre for lunch. This was in the lovely Convent dining room. A beautiful fish soup was served by the novice nuns. This being Lent, meat wasn't on the menu but that didn't matter.
After lunch, I met with Oxana, a psychologist who had recently joined the Team as a volunteer. She was keen to learn how MND patients coped with such a terrible diagnosis and fate. She also explained how she was having interesting on-going discussions with Bishop Pantelymon, head of the Orthodox Mercy Service supporting the Project. He was having difficulty understanding the need for a psychologist if patients had God for support.
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