Notes from visit to Belarus Nov 2008
Dr. Rosemary Newton, Associate Specialist in Childhood Epilepsy,
David Lewis Centre, Alderley Edge, Cheshire
General aims:
1. Try to discover how we can get rectal diazepam introduced ASAP.
2. Talk to doctors re1 and re anticonvulsants
3. See individual families when asked and advise (within available drugs if appropriate)
4. Talk to teams re epilepsy, seizures, rectal diazepam and answer questions
5. Visit institutions and try to help with epilepsy care and advise on any general health issues which
arise/emerge.
6. Assist Linda in any way with the aims of CCP
General comments
Patients seem to alter their drug doses and also seem free to doctor shop. I was inhibited at first at giving
advice and it helped after I’d understood more about how the system works.
Some patients attended hospital specialists and some just the polyclinic doctors. Licensed and prescribed
drugs are free for ordinary child and adult epilepsy patients (if you can find a chemist who has the drug).
Institutions, however, are expected to pay for drugs from their budget. Not sure if any doctor
systematically reviews and follows up patients.
Hospitals have lists of allowed drugs and specialists can only give patients drugs from that list. Hospital
doctors can apply to have drugs added to the list but it is hard work. Specialists can however write to
polyclinic doctors and ask them to prescribe drugs they do not have on the hospital lists. This is common.
There did not seem to be a system of regular active management of someone’s epilepsy. Patients (or
parents) went to polyclinics for prescriptions but it felt as though no changes in doses were made unless
patients pushed for it, even if they were admitted in status.
Patients believe that drugs from abroad are going to be better than anything they have in Belarus, so are
keen to find out about new advances. The Belarus government wants patients to have Belarus made drugs
as much as possible but these are widely distrusted by patients.
It is possible for patients to obtain and import drugs from abroad indeed patients seem free to obtain drugs
from abroad which are not licensed or available in Belarus and take them. It is also easier to get drugs
imported officially from the former Warsaw pact countries than the West, but diazepam for example is
widely believed to work much better if it is UK diazepam than Polish Relanium (also diazepam. Relaniun
is commonly made into a suppository by chemists for use by patients (‘Relanium tubes’) but there is often
no dose on the packet so it is difficult to know the strength.
Patients and doctors widely trust some imported drugs more than others. I was told about German,
Belgian and Italian Depakine (valproate). Mostly the brand I saw with patients was Depakine chrono
made by Sanofi.
Knowledge of epilepsy
Gomel paediatric neurologists seemed to have knowledge of the new and old International classification
system for epilepsy and claimed to apply it. Patients, however, usually talked in terms of having either
epilepsy or seizure syndrome which was not considered epilepsy by many patients. One patient
mentioned Lennox-Gastaut Syndrome. The approach to investigating diagnosis and treatment was similar
(in theory). There may be misdiagnosis of epilepsy on quite a large scale and there may be poor
knowledge amongst some of the doctors.
First line drugs were Carbamazepine (Finlepsine) and Valproate (Depakine chrono or Convulsifine),
however VPA is not on the main hospital list only the psychiatric hospital list. They also have
Lamotrigine and Topiramate. VPA, LTG and Top are all considered expensive drugs. They hope to have
Levetiracetam available next year.
All doctors seemed not to have access readily to information about advised doses and were keen to ask
me for these (which they always noted down). Gomel Paediatricians said they regularly used VPA in
doses up to 80 mgs/kg, and they said they used hepar (presumably liver) protectors to make this safe. I
never discovered what these are.
Adult care
The small number of adult community patients and within Vikov (home for adults with
Psychoneurological Disorders) I saw seemed to have no systematic review and many were on paediatric
doses of drugs (eg 300 mgs of CBZ and having regular long seizures).
Treatment of status (confusingly Russian for status epilepticus is ‘epistatus’)
Some doctors ask the chemist to prepare ‘Relanium tubes’. These are diazepam suppositories made with
cocoa butter and Relanium. I never discovered dose of diazepam in any of these except a vague mention
of perhaps 5 mgs. There was widespread view that diazepam was very dangerously addictive and that
dose etc needed to be controlled. All who had experienced rectal diazepam and Relanium tubes said the
latter were ineffective. I saw one patient who was having up to 10 Relanium tubes a DAY.
If seizures continued an ambulance was called and patients were often given intra-muscular Relanium
injection. If patients have complex problems they are often not welcome in hospital and the ambulance
might refuse to take them. Many, however, end up in intensive care repeatedly, but no-one seems to alter
their background anticonvulsants when this happens.
There was general support for trying to get rectal diazepam legally/easily available, and Galina Shevko
(Gomel Chief Paed Neurol) was going to try to lead on this. A proposal was made that they try to get
permission to do a pilot project in Gomel of using rectal diazepam in a number of patients, chosen for
frequency of status, in order to try to demonstrate its use and safety. CCP would supply drug for this
purpose. The aim would be to get to get it either legally imported and licensed or to get it made in
Belarus. Linda was also going to see people in Health Ministry to try to get this to happen.
Minsk
Talk to hospice team about seizures and rectal diazepam. Demonstrate giving rectal diazepam.
Gomel
Visit Tatiana’s psychiatric hospital (children). Although Tatiana has good knowledge of epilepsy and is
strong dynamic personality general environment of the hospital is depressing. Tatiana, I think, does not
really look critically at what she is offering but assumes it is good. She quickly goes on the offensive if it
is implied that she could improve things, so it is difficult to offer more than help with toys equipment etc.
Not clear why most of kids are in. Many seem there for trivial reasons or to have been there for months.
Tatiana says that this is because it is better there than the alternative placements. However it presents as a
depressing, impoverished environment, with little stimulation, few activities on offer and apathetic carers
with little opportunity for spontaneity. The hospitals I visited had generally not made as many
improvements as the institutions seemed to have done.
Tatiana talks as though only she cares about epilepsy and can manage it well. There is clear rivalry
between her and the doctors from the regional hospital. They do not cooperate or get on. She does,
probably see more of the complex problems and sometimes takes on patients that they have not controlled
and delights in crowing when they improve with her care.
Tatiana said it was the year of the autistic child next year. Is this true? If so it is an opportunity as well.
Regional Hospital
Adult neurologists. Talked re rectal diazepam. They couldn’t see the point and felt it was just a different
way of doing things. Bit disappointing.
Paediatric Neurologists. Olga showed us round. I felt she wanted everything tidy and in its place. There
was a fairly barren playroom with a play-worker. Olga said there was no point in Linda providing toys or
equipment as children just broke things! Play-worker was very keen to have more especially craft stuff.
Mayflower Centre
This respite centre set up by CCP UK. It is well resourced, with a warm and friendly atmosphere and
seems to have good carers.
Consultations with families and Mayflower doctor who led with me answering questions and telling them
about how we’d do things in UK.
Seminar for Paed Neurologists.
Depakin (VPA) rep there who gave brief talk. I talked re diagnosis and basic treatment. They knew ILAE
classification (new), although doctors and patients (outside the seminar) talked about either epilepsy or
seizure syndrome (which was not necessarily epilepsy). They have Finlepsin (CBZ) 1st line and claimed
Depakine (VPA) was also 1st line, although it is not on the allowed list for the regional hospital, only the
psychiatric hospital. They also use topamax and lamictal and were keen to ask about levetiracetam
(Keppra). They do not have access to 24 hour EEG and CT scanning is most usual scan.
Second section was based around use of rectal diazepam as rescue medication and discussing possibilities
of getting it made or imported and how it could be made available to patients. There is widespread
suspicion about it being addictive. I demonstrated giving it to teddy. Galina Shevko (Chief Paediatrician)
was very keen on it being made available. We suggested a trial in Gomel of a number of patients having it
for an agreed number of months with the health ministry allowing it to be imported. CCP(UK) would
provide supplies if allowed to import it. Priority should be to giving to children who have regular hospital
admissions. Aim is to demonstrate faster resolution of seizures and reduction in admissions to ICU in the
treated group. Galina later phoned to say she had already got agreement for it to go ahead (probably local
Gomel heath authorities) and was planning to go to Minsk the next week to further project.
Anatoly Kasim (Chief Doctor of Regional Hospital)
Talk re the urology situation and lack of Oleg doing the urodynamic investigations needed to allow
children with neurogenic bladders to use catheters to reduce their residual urine and protect their kidneys.
I am also concerned about the incidence of reflux and repeated kidney infections in these children and
feel more urgency is needed in assessing whether ureters need re-implanting.
He supports the rectal diazepam plan and has also arranged for visits to take place to all the institutions by
consultants to look at the medical care.
Rechitsa Boarding school.
Vibrant lively place where I felt there were caring staff and children had a lot of freedom to play.
Talked with Felchers and saw some children with epilepsy. They had visit from specialists from Regional
hospital on 5th Oct. Many of the children had drugs altered or increased (often VPA). Since then all had
become seizure free. Not sure if we believe that – but it sounds as if the visits that Linda has pushed for
are happening and might be getting the children better medical care.
What is the system for monitoring a chronic illness like epilepsy? Do most of the patients rely on
them going back to the doctor if they’re not satisfied or is there a system of regular reviewing? I
suspect that only a few patients ever get regularly reviewed by a doctor who feels confident about
handling anticonvulsants. Also the ones with the pushiest parents might get to see specialists and
the others left to the polyclinic doctors. Who (if anyone) sees most patients with epilepsy?
Zhuravichi Children’s home
Visit coincided with visit from doctor and surgeon. We went around together. Very controlled and
supervised. Epilepsy said to be controlled better now, with visits from doctors. Main problems with
seizures are with the children with multiple handicap. These will be the most difficult to do anything
about. Discussion with surgeon about gastrostomies. Saw several children with indwelling naso-gastric
tubes. Extreme reluctance to insert gastrostomies. Claimed you cannot do this without being able to
measure pH in the oesophagus before surgery. This is not true. Claimed that operating to stop reflux
(fundoplication) would obviate need for gastrostomy. This is nonsense when there are children needing
NG tube feeding. I do have reservations about the ability of the staff to care for a gastro and I’m not sure
who would train staff to keep them clean, replace tubes etc, so think they should only be used for the
worst cases. They would still have to use pureed food for feeds and issue would remain of inadequate
calorie intake because of staff not having enough time to feed. Good care seen from Polish nun who also
joined appropriately in with discussions.
Care and education were much better than I expected and there was a good atmosphere in many of the
rooms I visited.
Re constipation: lactulose is available but when the state ration of nappies is 2 per person per 24 hours
I’m not sure it would be helpful to be too aggressive about treating constipation!
Vikov (Home for adults with Neuropsychiatric Disorders).
Linda’s karaoke room is a great success. Lots of constructive activities going on and craft work displayed
around the place. Desperate for craft materials or junk to use.
Little time for epilepsy consultations as Felchers had to leave for bus. Tried to make arrangements for
them to meet me the following morning but none turned up. Saw Misha with them, but later when I
managed to see Misha in his ‘corridor’ I got a very different history of numbers of seizures from him and
a carer there. Difficult to make any recommendations. The Felchers are conscious of their limited drug
budget. They spend a lot on expensive neuroleptics to keep people quiet (and safe) and this is more of a
priority than anticonvulsants. They therefore have a vested interest in saying seizures are not really a
problem to avoid bigger drug bills. This potentially affects all the institutions.
I think the patients would be helped (and visiting doctors) if someone put a seizure recording
system in place so that there was some basic recording being done all the time and you felt you were
being given information which had some basis. It would make it easier if the Felchers could refer to
seizure charts and would also be easier to see if drug changes were having any effect on seizure
control.
Dima and Sasha need help. They need something in their room to amuse them. Perhaps music. Would be
nice if one of them could work a simple switch to turn things on and off. They can hear things from the
karaoke room.
Dima has a leaking supra pubic catheter. I hope that Anatoly will have arranged for someone to sort this
out.
Both of them are under sized prepubertal young men of 22 and 23, but I’m not sure that getting them
through puberty would achieve anything for them. They are both VERY developmentally delayed and are
kept in small beds. Do not know if they ever get out of their room or even sit up.
December 2008