I have been sent the website address for Anastasia which gives her amazing story and is available by clicking here.
Motor Neurone Disease in Moscow
I have been sent the website address for Anastasia which gives her amazing story and is available by clicking here.
Rachmaninov concert, Cadogan Hall, London, Sat 2nd March
My Russian adventure started in London. The night before flying off, I was singing Rachmaninov (in Russian) at a concert in Cadogan Hall next to Sloane Square (no relation). I stayed the night in the Barbican at a friends' flat just down the road from Smithfield meat market. Passing through the next morning, it was unusually quiet with no sign of the usual meat porters rushing around in their white coats. Then the writing on a shop window explained it all ...
It's a four hour flight to Moscow. A snowstorm was well underway when we landed after dusk at Domodedova to the south of the city. The white runway was barely distinguishable from the rest of the airfield except there weren't any of the huge mountains of snow which were piled up to the sides which made it feel you were landing on the moon. As we turned off onto the taxiway, I looked back to see if any more aircraft were trying to make it in but the runway was already swarming with flashing yellow beacons - snow ploughs like worker ants, battling to keep the runway open before the next flight came in.
Once through immigration I had to run the gauntlet of the hundreds of taxi-drivers touting for business. This was my first chance to practice the one Russian word I knew : "Nyet" pronounced with the puffed out chest of authority. It seemed to work. Miraculously, Natalia, who had come to meet me spotted me in the crowd. Must have been something to do with the sandals and shorts abroad in the middle of winter.
Driving into the city, there were hold-ups because of multiple shunts on the icy roads. Obviously, all the gritter-ants had been diverted to the Airport to keep it open.
Natalia, who is a director in public relations for an advertising company, told me the history of the MND project I had been invited to come and see. It had started just under 2 years ago after Natalia's father-in-law died from the disease. She, like many others who have witnessed this in their families, wanted to make things better for future patients and their loved-ones. Services for such patients in Russia are sparse and many are left just to get on with it. Natalia obviously had the skills, drive and ambition to change this.
The entrance to Mary & Martha Convent
Orphanage and Cathedral
She got together with a local neurologist, Lev Brylev, and they formed a team of different professionals which included palliative care doctors and nurses, a psychologist, social worker, respiratory and intensive care physicians, physiotherapist, nutritionalist and supporting volunteers. Click here for website They meet fortnightly to discuss some of the growing list of patients on their books. They have also set up a 7-day hot-line for patients and family needing advice. An amazing feat in such a short time.
The project is one of 24 (!) within the Orthodox Mercy Charity. This is a church-based charity in Moscow well known throughout Russia for establishing social projects for the most vulnerable in society - the homeless, abandoned disabled in hospital, the elderly etc. It is based in the Convent of Martha and Mary in the centre of Moscow. There is an orphanage for girls abandoned through poverty and also a rehabilitation centre for children with cerebral palsy.
Natalia explained the programme for the week which included spending time with various members of the team at work and visiting MND patients in their homes and in hospital. It was to culminate with a 3 day training weekend in a beautiful countryside retreat in a forest two hours outside of Moscow. I was excited!
I woke up the nexy morning in my hotel room to an industrial scene outside the window - not unlike the industrial north of England of my youth but with blue skies and snow on the ground. This was kind of how I was imagining Moscow to be, not realising how unrepresentative this first glimpse was. In reality, at street level the city is bright and bustling, the new office blocks and apartments in the centre mixing with the older austere soviet-style government buildings and even older beautiful churches with those golden onion domes. Although the suburbs weren't as salubrious, things weren't anything like as grey and depressed-looking as I had thought. Not like this in the provinces, I was told, where people are resentful that much of the wealth created since the downfall of communism has been sucked into Moscow to the neglect of everywhere else.
Lada for sale - one careful owner
Marina (left) keeps a watchful eye
After breakfast, I was met in the lobby by my minder for the week, the wonderful Marina. She was the perfect guide, patient when waiting for me to take photographs of a subject from every conceivable angle, even taking me to other sites with more photogenic potential when others would have completely lost the will to live - speak to Sue! Several times, she rescued me on the Metro when, easily-distracted by something, I wandered off and could have been lost without trace, unable to read the crylic signs which make no sense to a westerner. There she was, locked on to me in a discrete kind of way. I'm sure she must have been trained by the KGB.
Marina took me to meet up with lovely Katya, one of the nurses on the project who visits MND patients at home. We travelled to see one of her patients, Galina, a retired bank manager. I had to purchase a Metro ticket and, not yet being used to the currency and running out of hands, I had to resort to holding a wad of notes in my teeth whilst rummaging in my wallet. Katya was somewhat dismayed by this and kindly advised that it probably wasn't a good idea for reasons of hygiene. Once a nurse, always a nurse ...
We arrived at Galina's apartment block and Katya was keen to point out that this wasn't representative of the average patient as she lived in one of the better apartments and could afford to pay for a full-time carer. Social services don't exist in Russia and if you can't pay, you don't get. We were welcomed at the door by Galina's lovely carer who came to Moscow from the one of the post-soviet states to work for her some years ago before Galina got the disease. She has since stayed on to look after her loyally and lovingly ever since.
Galina has little leg strength and has lost her voice but can communicate using the computer. Through the project, she has acquired a ventilator for intermittent assistance with breathing but, like many people, is finding it difficult to get used to. During our visit, a community nurse, again paid for, arrived to administer physiotherapy. She was one of those stern no-nonsense sort of nurses and gave Galina a right going over. I was only watching but it left me feeling exhausted.
In the afternoon, I met with Vasily, a young respiratory physician who is part of the Team. Unusually, but essentially for patients who are unable to get into hospital, he visits them at home to advise on breathing and artificial feeding tubes. The gentleman we visited was losing weight and not too keen on the idea of a tube inserted through the abdominal wall into his stomach. Vasily tried to persude him to have a nasogastric tube inserted through the nose but, after several attempts, he wasn't able to tolerate it.
On the way back by Metro, we talked about the dilemma. I said that I had found the same reluctance on the part of patients to gastrostomy tubes back home which must seem very alien when first mooted. Some eventually come round to the idea but many passively resist, knowing that this is going to lead to them dying sooner. Although those around naturally fear "starvation" to be a terrible way to go, patients themselves do not necessarily appear to suffer, the increasing sleepiness and weakness from this and the MND's progression seeming to mitigate otherwise distressing symptoms. In any case, I said, medications for physical or psychological symptoms are always there as a backup. But therein lies the rub. Drugs like morphine are registered only for cancer patients in Russia with huge resistance to prescribing them in patients with other illnesses such as MND to relieve discomfort caused by increasing immobility or breathlessness. Even if doctors could get hold of it, there is the fear that their livelihood may be under threat from the authorities who might clamp down on them for such irregularities. Vasily told me the story from several years ago where police stormed an operating theatre where the surgical team were harvesting the lungs from a brain-dead patient for transplantation. Everyone in the theatre was arrested and for several years, no transplants of any kind took place in Russia for fear of the same thing happening. So against this background, doctors like Vasily really are between a rock and a hard place when it comes to trying to relieve suffering from breathlessness and under-nutrition.
That evening, Natalia took me to see a film on the final day of a Moscow film festival which happened to be about MND. Although made in the UK, it isn't due to be released here until June. Called "I am breathing" (click here for a link) it is a documentary about a thirty-four year old man called Neil who lived near Harrogate in Yorkshire with his wife, Louise, and one year old son, Oscar. Just after Oscar was born, Neil first started to get the symptoms of what was eventually diagnosed as MND. Neil & Louise started writing a blog of their experiences which they wanted to do in order to raise awareness of the disease but also as a legacy for their son who wouldn't remember much about his father before he died. When it was suggested a film documentary be made of his final few months, Neil and Louise were more than keen and their moving, funny and touching experiences are a wonderful testament to their combined strengths and the skill of the film-makers. See it if you get half a chance.
Altogether, an emotional day.
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.
Korean company launches new model onto the Russian market. This one is the Kia Sputnik
One of the many wonderful gems in Moscow is the Metro. Built by Stalin in the 1930's, it was designed to inspire the young Soviet Union to a better future by building stations which were "palaces for the people". Help and advice was drafted in from London Underground, the oldest underground system in the world. It began operations itself 150 years ago this year, in 1863. Unlike the London Underground, the stations have high ceilings with chandeliers held up by marble columns and granite walls decorated with beautiful coloured mosaics. Other materials such as cast bronze, steel and brass were used in statues to exemplify the Communist Party's vision of collective power and strength. With Stalin's denunciation later on in the 1950's, many of the icons of his era were removed to be replaced with images of the rising star, Lenin. New stations with more modern art are still being built today.
In he afternoon, I was taken to visit the Russian Research Centre for Neurology. It is in a hospital for neurological patients in the Moscow suburbs and was taken over during the communist era for secret research of a non-medical kind.The scientists there were more or less under house arrest until the collapse of the Soviet Union in the 1990's when it reverted to being a hospital once more.
I met with a lady professor of neurology who was doing MND research and her fledgling consultant neurologists. I thought I must be getting old because they all looked far too young to be qualified, let alone consultants. I was later relieved to find out that in Russia, doctors become junior consultants in their chosen field 2 years after completing basic medical training. They were very polite and welcoming and showed me around various departments including a sophisticated rehabilitation unit with computer-led biofeedback mechanisms for graded exercise following neuro-debilitative illness and told me about research into electromagnetic therapies for improvement of neurological pathologies of various types. It was great to hear that several of the young doctors were coming to the training seminar the following weekend. Then it was back on the Metro for another art display.
Another bright and sunny day and Marina was in the hotel lobby to take me to the First Moscow Hospice. There are now eight hospices in Moscow but this was the first to be opened in 1997. I met with Freke de Graaf, a Dutch nurse who has been working there as a volunteer for over 10 years. She explained the history of the place. It was the brainchild of Victor Zorza, a Polish refugee journalist who was determined to introduce the modern concept of hospice care which had developed in the UK. He was adamant that it would be free of any payments or bribery. Although the Soviet Union was the first country in the world to introduce state-funded health care, doctors and nurses were and still are one of the least well paid of healthcare professionals globally. The practice of greasing hands to gain favour for jumping queues or for basic things like taking a bed pan away became the norm and still exists in some places apparently. Known as a "gratitude for service", Zorza was determined to make palliative care available to all, regardless of the means to pay. Although political moves have taken place to stamp corruption out of everyday life in Russia, there still exists a residual culture accepting of it as the norm.
The Hospice consists of 30 beds and also has a home-care service going out to patients at home. Both adults and children are accepted although a children's hospice is soon to be built elsewhere in Moscow. The 4-bedded rooms are especially homely with traditional furniture and a central table with flowers.
Whilst I was there, I gave one of two interviews to journalists comparing my experiences of Russia and UK.
Click here for link to article (in Russian)
They were especially keen to hear about MND patients' rights in the UK to have ventilators which were keeping them alive switched off. A law in Russia made as recently as 2011 forbids doctors to deliberately omit or discontinue treatment which leads to the patient's death. I reflected that, even though there are big problems with the support to patients and families in Russia, services is the UK are far from perfect and often subject to a post-code lottery.
Just before we left the Hospice, one of the administrators asked me would I mind taking a package in my luggage back to the UK. When I asked what it was, she said it was a "glass". My immediate thoughts were of a vial containing some illegal substance but it turned out it was a microscope slide of a brain biopsy. One of the Hospice patients, an eleven year old girl called Anastasia, was currently in London receiving treatment for a brain tumour in Harley St. and they had asked for previous biopsies taken in Russia. Having been assured of the propriety of the request, I was happy to oblige. Details for picking up the package were to be finalised.
There's that woman again - the one who keeps following me around ...
With the afternoon free before an evening concert, Marina took me on a walking tour of the sights of central Moscow. We first went to one of her favourite outdoor sculptures, the controversial "Children are the victims of adult vices" by Shemyakin. In a park behind the British Embassy, it is based around the gold statues of 2 children playing, depicting "indifference". The surrounding sinister figures depict various adult vices which affect children including alcoholism, drug addiction, prostitution, child labour, war. Despite initial resistance by some on the basis that it would scare children, it makes a powerful statement.
Guarding Cathedral ice-sculpture (behind trees)
From there, it was across the semi-frozen Moscow River towards the Kremlin and Red Square. Floodlit and in the fading sunset, it all looked spectacular, especially the multicoloured domes of St Basil's Cathedral at the end of the Square.
By this time, word had got through to Marina by phone that Anastasia's father was going to rendezvous with us just outside Red Square to hand over the package. In a different context, I could imagine clandestine exchanges like this taking place during the Cold War. He was very grateful for the favour . We shook hands and went our separate ways in the crowd.
I mentioned earlier we had a concert to go to. Marina told me about Alisa Apreleva, a Russian singer, composer, multi-instrumentalist and poet. She lives with her family in Boston USA where Marina had met her and asked if she would come back to Moscow to take some sessions in music therapy at the weekend seminar. Alisa obliged and also arranged to put on a public concert in a cellar bar in Moscow during the trip over.
Her one-person act was amazing. Playing cello and singing haunting songs based on traditional Russian folk tunes, she simultaneously records tracks on a "loop station" controlled with foot pedals. In this way she builds up a piece made of layer upon layer of vocal and instrumental tracks. Incredible! And teaching on the seminar too !
Click here for a link to some of Alisa's music.
After the concert, Natalia picked us up to drive us to the seminar venue in the middle of nowhere 2 hours outside of Moscow. I'd have to wait until the morning to see what it looked like.
The Lada 4x4 gets put through its paces in front of the retreat
Elena, my brilliant interpreter, does an impression of road-kill
Encounter with the priest
Another morning of clear blue skies and sunshine in a landscape smothered in thick snow. The retreat was in the middle of a forest clearing with deafening silence outside. With upstairs bedrooms and a Chapel, there was a cosy lecture room downstairs and a kitchen with chef and assistants specially brought out from Moscow. I had to pinch myself yet again to believe I was in such a beautiful place.
People eventually gathered after breakfast for a series of talks and discussions on problems to do with helping MND patients. Some had brought their other halves and children to spend the weekend there.
I described the set-up in my hospice where we had developed a special interest in MND and ran a joint clinic with a local neurologist. I also talked about symptom control measures, acknowledging the real difficulties there were in Russia obtaining and getting approval for the medications we routinely used. Anna spoke about the ethical principles of patient autonomy, truth telling and fully-informed consent, something relatively new over there. As often used to happen with cancer patients, doctors still do not necessarily tell patients the true diagnosis out of the paternalistic wish not to inflict distress over an illness they cannot do much about anyway.
During her session, one or other of Anna's two beautiful young daughters would quietly sidle up to her whilst she was speaking at the front of lecture room to ask permission for something before skipping happily off again to go out and play. Anna would deal with this seamlessly . Why can't men can multi-task like this?
Anna (right) organises us into small groups
Over the next 3 days, there were other sessions presented on nutrition, assisted ventilation and music therapy. Alisa led us in practical sessions such as a musical version of "pass the parcel" where we stood in a circle and sang a made-up tune to hand over to the next person who embellished it in their own way before passing it on again. In the absence of medications - or even as first-line treatment- the use of music as therapy for symptoms of breathlessness or terminal agitation is going back to how people were helped on their journey out of this life and into the next before everything became so much more medicalised.
In the evenings, there was more voluntary music therapy before bedtime in the form of jim-jam jamming sessions. On the final Sunday morning, a traditional Russian Orthodox service was held in the beautiful chapel with the wonderful liturgical singing which Rachmaninov, whose work I had been involved in just over a week ago back in London, had used as inspiration for many of his choral pieces. Orthodox services last 2 hours but they are fairly relaxed affairs with the congregation is free to take a break, wandering in and out at will.
The whole atmosphere that weekend was one of one big family, all working towards the same goal. It was a real privilege to be part of.
Although the difficulties faced by the project team in post-communist Russia at first appear overwhelming, the more I thought about it, the more it struck me that it wasn't that long ago that things were much the same in the UK. Furthermore, it's not as if we've got it all sorted by any means. Take social services and home care nursing, for example. The way different authorities prioritise support of this type varies hugely according to where you live and, with financial cutbacks, the threshold for providing such services for free is going up. The whole concept of a fully comprehensive, free National Health Service has been under attack in the UK. GPs have now been saddled with the dual burden of doing what's best for patients whilst being responsible for enacting a highly contentious government overhaul of how all services throughout the NHS are paid for.
Morphine is freely prescribable for MND patients but often left until long after discomfort or breathlessness could have first benefitted. Fears on the part of some doctors still exist of being accused of killing patients post-Shipman.
Whilst it is rare for patients not to be informed of a life-threatening diagnosis these days, the skill with which this is done and the on-going psychological support can leave much to be desired.
So, although the degree of the difficulties isn't the same, I think there are more similarities than differences between our countries. I was fortunate to enter palliative care in the UK well after these issues had been identified, often against a lot of resistance. I greatly admire those I met in Moscow who are pioneers in changing traditional attitudes and practice. It's bound to take time but, as has happened elsewhere, I'm sure they will succeed. Thanks for having me, guys. I loved every minute of it.
PS. Anastasia's microscope slide was safely delivered to a courier at Heathrow Airport. I often think of her and wonder how she is doing.