Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
The impact of a global supply chain crisis
February 2024 and we’re approaching 4 years since the beginning of the COVID 19 Pandemic. The UK entered its first lockdown towards the end of March 2020. I had to double check that was correct as I couldn’t believe quite that much time had passed.
As a carer I often feel that large portions of time will pass me by in a blur. Sometimes for months on end there will be non-stop appointments, phone calls, emails, applications and so many other kinds of relentless admin drudgery that comes alongside managing the care of a medically complex child within a rapidly failing system.
We all remember what a scary and unprecedented time it was during the pandemic. Many families like ours battled through some extremely tough circumstances, without the appropriate care and support they so desperately needed.
When lockdowns were eventually lifted, restrictions were eased and everyday things slowly started to return to normal, I felt a genuine sense of relief and (I now realise very naively) allowed myself to cling to the hope that things would improve for us.
Things could only get better now surely.
We would have access to the services that had been halted, much needed support would come, access to medical treatment and therapies would be better than they had been for months etc.
Whilst of course there have been aspects of our life that have improved since coming out of the pandemic, I can honestly say that overall, the majority of things have only continued to get progressively worse.
A huge issue that we have been facing for the last few years is being unable to obtain vital medical supplies and medications, as a result of the ongoing global supply chain crisis that began during the pandemic. I have lost count of the medications and supplies that we have struggled to obtain. It seems to be a different item every other week and I live in constant fear of what the next thing will be.
It is absolutely terrifying as a parent to discover that an essential medication is missing from your child’s prescription, even more so when you contact the GP or the pharmacy (praying that it is just an oversight that has been missed) to be told nonchalantly “We can’t get that medication, there is a manufacturing issue”, as if this tiny titbit of information (that was only offered up because you contacted them and asked) is enough for you to stop hassling them and be off on your merry way.
Now, I’m a reasonable and logical thinking person (most of the time), so I understand that some situations are out of people’s control. I have never expected that by some miracle because I’m stressing our urgent need for something, it can be magically conjured up from thin air.
I’m very aware that it is an ongoing, widespread problem.
I’m very aware that it is an ongoing, widespread problem. What I can’t seem to elucidate (despite repeated attempts to multiple professionals and services) is that the thing that I take serious issue with is the complete mishandling of the situation.
If items are unavailable, then they are unavailable. However, the thing that I find exceptionally concerning is that not once during this global crisis, has any professional contacted me voluntarily to check on the welfare of my son in the event of an out-of-stock medication or to discuss concerns I may have. Even in relation to a medication that can cause seizures, respiratory distress and fatality if abruptly stopped. At no point has anybody voluntarily offered any alternatives or suggested a contingency plan going forward should a specific item not come back into stock.
Every single time we have been faced with a supply issue that has eventually led to a solution being reached, is only a direct result of me relentlessly making a nuisance of myself and demanding that someone address the problem (either by trying to source the item elsewhere or failing this, requesting an alternative medication).
This has taken several months in some circumstances.
One of his medications that we are currently unable to source, has been in short supply for some time. I have been trying to work with his medical team to manage the problem since around November last year. I have sent close to 50 emails in relation to this one medication and made close to a hundred phone calls.
I have since discovered (again, only because I researched the medication myself) that this medication that is unlicensed for use in children, has a particularly nasty withdrawal, especially when prescribed long term and my son has been on this medication for around 3 years. Online it was advised that a specific medication can be prescribed when coming off this just in order to manage the withdrawal symptoms.
So obviously I have concerns about this and would like to know how best to manage this withdrawal period that he will have to go through.
I have since spent weeks telephoning and emailing several Doctors, pharmacists and healthcare professionals about this and not one person has gotten back to me with any advice on how to manage this.
I always do the very best that I can to ensure my son has everything that he needs to manage his medical conditions and keep him as well and comfortable as possible. This is becoming harder and harder with each passing year, as the level of chasing, red tape and hoop jumping required for the most basic of things multiplies and the attitude towards you for having the audacity to do so sours even further.
The added workload and emotional toll of it all is a heavy burden to carry, but one that I would battle through to the death if I had to, to ensure that my son’s needs are met.
The complete lack of foresight and concern for people’s well-being from the very people that we rely on is a stark reminder of the state of our health service. Not everyone that finds themselves facing these problems is fortunate enough to be able to advocate for themselves or appoint somebody else to do so on their behalf. I often worry about what happens to those people. Do they just silently disappear into the ether?
