#MSCOVID19 Ding-dong round 2

A 15-round heavyweight boxing match is a good analogy when it comes to describing our fight against the coronavirus. We have spent the last 3 months sparring and looking for each other’s weaknesses as we land a few body blows but no knock-out punch. Although we have flattened the curve we have a long way to go. The ultimate aim will be to knock-out the virus with a strategically placed blow to the head in the form of a vaccine. However, before we get a vaccine there are many more rounds of boxing left in this pandemic and sadly many more deaths to come. 

It looks as if Israel has lost round 2. There has been a worrying rise in daily coronavirus infections in Israel. The failure to contain the virus has led to the resignation of the head of public health services, who said in his resignation letter that “the entire country is burning”

At one stage Israel was being held up as the poster child of how to control the pandemic at a countrywide level. Israel was one of the first countries to close down its borders and to lock down early. The strategy was so successful that by mid-May it only had a trickle of cases. Then Binyamin Netanyahu, the Israeli prime minister, relaxed the lockdown and urged Israelis to go out for a beer and “have fun”. Does this sound familiar? Boris Johnson and his cronies are even considering giving every adult in the UK a £500 voucher to spend on the service industries most hit by the economic fall-out of the COVID-19 to stimulate the economy.  Don’t you think this is a good idea? I don’t.

Based on the Israeli experience the UK is likely to have a second wave of coronavirus infections and the anticipated second surge in NHS hospital admissions and deaths. The one glimmer of hope has to be our contact-tracing system, despite its imperfections, which may be able to quell the outbreaks locally and prevent spillover into the wider population. 

The tragedy of a potential second, third and subsequent wave of infections is that it prevents the NHS from getting back to a relative state of normality and recommencing routine services again. The longer the tail wags the dog more of our patients with MS and other chronic diseases are suffering from a suboptimal service. Although we are providing a remote MS service, that I am actually quite proud of, it is not ideal. Many patients are trapped in limbo on a stalled diagnostic pathway or waiting for routine monitoring MRI scans and/or lumbar punctures and the list goes on. 

The following is the summary of the recent survey we completed in relation to remote MS services in the UK. I think the results are self-explanatory and there is clearly room for improvement. I want to thank you for taking the time to fill out the survey; you will be surprised that we do take on board your feedback and just maybe we can improve things going forward.

Any additional thoughts or comments from yourself? They are much appreciated.

CoI: none in relation to this post

11 thoughts on “#MSCOVID19 Ding-dong round 2”

  1. Please note I have been trying not to post too frequently on COVID-19, but it is hard considering the impact it is having on pwMS and the NHS.

  2. You mention Israel, and they definitely squashed the curve.

    > The one glimmer of hope has to be our contact-tracing system, despite its imperfections, which may be able to quell the outbreaks locally and prevent spillover into the wider population.

    Israel also has an extensive contact tracing system. Their mobile technology – the same system they use to track terrorists and terrorist contacts – is widespread and extremely effective. Their tracing systems are extremely well resourced and effective.

    The UK’s measure are, by contrast, shambolic and poorly executed.

    I fear we will have that second spike. Unfortunately the government seem to have lost a lot of public support – partly through their “do as I say not as I do” attitude, partly through blaming those very healthcare workers they were lauding just a few short weeks ago. The public are reluctant to blame the NHS or healthcare workers given the very obvious efforts you guys all make – and the only obvious conclusion is that the government are trying to deflect blame. The problem then comes when the government try to impose local lockdowns and local restrictions – people may not be as diligent in following instructions from ministers who have been seen flouting lockdown rules – and the virus will thus spread. Sadly.

  3. I had worsening symptoms, called my GP surgery for extra painkillers. My prescription was delivered with a phone call back from the doctor the following day. Then a call from my consultant. All good. Still not well, but not panicking, it doesn’t help my MS. My GP practice has been doing telephone consultations for years, so it feels quite normal.

  4. There is nothing worse than ‘limbo’, mentally it’s destroying & all consuming. Feels like your life is on hold. I really empathise for all the new patients that are stuck at the moment, and hope that services can be fixed for them/sped up as a priority. These people are surely more important than those of us who are stable / on treatments.

  5. Hi Prof G, thank you for your info & in particular with DMTs. I feel your news is very welcomed but why is that you can inform us of this info & not our own clinics! My GP surgery is not aware of how DMTs work & their side effects. My clinic is aware but I have no comms apart from the administering of treatment. Are all their MS/Neuro patients so demanding that there’s no time in their working day to catch up with the latest news and or think how extremely vulnerable some patients must be feeling. Let alone experience, so very nasty side effects, of their treatment. NO, logging of issues with side effects for each patient. Patients to report & log their own problems in date order & telephone messages left, leaves a lot of frustration, I’m guessing on both sides – busy (trying to fit your call back in & you sense this in their urgency & lack of empathy) but also patients who are engaged in other things in their home, that when a call is received back – 9/10 I’m guessing, don’t have a fully successful conversation that supports and helps them keep on track.

    It might all seem a trivial to very busy clinics & especially at the moment. I would highlight though, this seemed the norm before COVID-19!

    If you have a party and invite say, 10 people, as you can cope with that amount of people in the space & number of glasses – the party goes well and everyone is given lots of attention and has a glass of something! If you have double that number – things start to go wrong, especially if you don’t have any drinking glasses! You can control certain numbers in everything we do. (Sorry not a great analogy – you’re very good at them, so please don’t judge!). What I’m saying is that why do the NHS/Clinics not look at their numbers of patients and look at where they are in Country and share the patients out more fairly. I have 4 hospitals in my surrounding area – some closer than others, some better run than others. Could the clinics not start now when there aren’t the foot-fall of patients coming in. Patients won’t mind (well I wouldn’t) be shifted around to accommodate a better service, regular contact & being valued as a patient, who tries extremely hard to negotiate their way around, different departments and over-crowded – lengthy waiting times and lack of support set up.

    It might be laughable to some this suggestion as they wouldn’t dream of pushing their patients elsewhere but surely lots of patients can adapt & get used to a different way of communicating with their HCPs.

    I recently had another infusion – the room was set-up in a slightly larger one with now only 2 patients & a lot of cleaning went on with all the machines and gadgets. We were able to sit back and relax better – we felt less stressed trying to leave to use the bathroom & noted the chemotherapy patients a lot better set up with enough dignity space given between them with a side table and lots of fans and windows. This is how it should be at all times. Also, bear in mind their is only one bathroom! So going back to comparing what it was like in December – I can only describe it as a dreadful state of affairs with folk tripping over each other – no-where to put your bag, drink or space enough to drag your drip through an area without asking people to move! I coped and didn’t say too much, as what can you say in a situation like that! The improvement to the section last week – was calmer, cleaner, spacious and all the staff were happy and less anxious, patients too 🙂

    If the length of time increases – just keep folk in the loop and inform them of where they are on the list, options to go elsewhere, if there isn’t such a wait. SAY enough! When patient lists are full and pass them onto the next available clinic elsewhere. I don’t mind travelling – as we travel anyhow! Give people the option, let them know that the waiting time is going to be long – if it is life threatening, then they should be admitted obviously there and then. If this causes a backlog – call/email and keep the patient informed. I feel I’ve gone off course a bit – but the new way of working can be organised better now – given time to re-organise properly. Tele/video conferences are also a fabulous way to help reduce the back log. Offer this to patients – most of us would say ‘YES’ as it’ll save on travelling to overcrowded car-parks, charging unnecessarily and the stress of a timed appmt. You could try the ‘pm’ for vid appmts – am for social distance face to face!

    There, I have had my rant again for the day – I do wish they would sort out the other departments though. How can a gynaecological appmt go ahead (face to face- not literally) but urology has disappeared into a black hole somewhere, never to be found again for at least months! Very difficult when you’ve been waiting since Jan 2020 to see someone! Re-referral – yep, I’ve tried this – told not to do this, as it could be sent to another black hole! MRI’s all good – working perfectly – Infusions great (now) working perfectly.

    Thanks for everything and I hope at some stage things in my healthcare world will be running as they should be. I can only hope 🙂

  6. With the second wave predictions people are either convinced it will happen or convinced it won’t. I try to listen to the measured opinions down the middle or I would go crazy!

    Do we not think the countries having a ‘second wave’ seem to be those countries who never had a genuine first wave? All they have managed to do is delay the inevitable?

    Will a second wave for us be recognised quicker, acted quicker upon, benefit of experience the first time, better knowledge of risks and treatments and available hospital capacity. Far better testing (even if not perfect it was significantly less perfect in March!) and hopefully more short-lived.

    Without optimism there is just no hope

    1. I’m afraid, given the shambolic handling of the pandemic in the UK, that the original herd immunity strategy is back by default.
      As for the second wave, given the ridiculous reckless easing of measures, it’s not if but when.

    2. I really hope we are better prepared for round II….Is it an OXbridge cabal with Boris to get enough people to test the Oxford vaccine in round 2 to get a quick result.

  7. It’s all very depressing. Trying to decide what to do about my next Ocrevus infusion for starters. I feel at this stage having been in lockdown for so long that I/we should be able to grieve everything we have been through both personally and as a country/world. But no, it is continuing and we, in England, have a government we can in NO way trust to lead the way. I feel totally lost and very down about the situation. If we had the leadership, that would help a little but we don’t.
    Each day I hear of a new dodgy million pound “PPE” contract awarded to another dodgy, small company. Check out the Goodlaw project Jolyon Maugham is the barrister looking into this. It’s a banana republic and it’s horrific for us lay people (w MS)….how much more can we take?!
    happy Friday!!!

    1. How much more can we take?
      Brexit in all its No Deal glory coming down the pipe at the end of the year should finish things off nicely, if there’s anything left of the UK by then.

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