Chair Message February 2021

on . Posted in About Us

Mark K 2Welcome one and all.

Lots of ongoing prodigious reading of all things COVID-19 in particular in response to inquiries relating to the current COVID vaccines and potential side effects for people living with GBS/CIDP and other auto-immune, immuno-compromised conditions.

The advice I have at present is watch this space.

With new vaccines and the current batch have been developed and rolled out in record breaking time, it is always best practice to use sample groups who are fit and healthy adults and the trials have been mainly focussed on these types of groups.

Makes sense as they are most likely to withstand any side effects that may develop.

Once these groups have gone through the trials then the vaccines are rolled out more widely and assessed.

High risk groups are generally left till the end to help ensure as many potential concerns are assessed and weighted.

Due to the COVID-19 emergency impacting many nations, the supply of vaccines is nowhere near enough for mass vaccination and supply will continue to be a key concern moving forward.

As such, the distribution will be triaged on a needs basis, front line and most vulnerable generally first.

As there are quite a few countries rolling out emergency use vaccines we are well placed, due to our comparatively good handling of COVID-19, to sit  back and assess these programs and be guided by the science.

I am advised vaccine development history indicates the quickest has been 4 years and the average 17 years to develop safe and effective vaccine/s.As such we are very much in unchartered territory with the speed of the initial Pandemic, the increasing spread and the vaccine development response. However, what has not changed that much is vaccination and assessing the impact on humans and efficacy of the vaccine to do the job of protecting humans.

These current vaccines are not a panacea for COVID-19 however, they are a good step forward in the overall strategy to living better with this virus. Further, whilst they are likely to reduce the impact of the virus on individuals, less people will get seriously ill/die,  the extent of immunity and how infectious patients remain is yet to be assessed.

We need time for that and care to ensure we tick all the boxes.

In the mean time we keep it simple, remain COVID Safe, maintain distance, further is better, wear a mask and ensure good hand hygiene; this will be the ongoing message for 2021.

Also, I have also been working with NIGAC as part of a patient specialist working group seeking to develop improved communication strategies for patients and specialists in relation to IVIG.

Far too often time constraints and availability of specialists do not allow for a great deal of doctor/patient interaction, Q&As etc. so how do we get important information about IVIG to patients and get feedback; 30 min consultations annually are insufficient?

It is interesting to note after discussing my CIDP and IVIG history with a communications specialist she tore up her draft patient/doctor advice as it was not even close to addressing the concerns I raised; she thanked me for providing such a diverse perspective.

A work in progress and we now have a patient voice sending important feedback to NIGAC and the National Blood Authority.

Until next time, please stay safe.

Cheers, Mark.