Earlier today a tweet went out about how to properly arrange and manage the use of oxygen assistance when going abroad, more specifically how to tackle this issue when booking flights and knowing what airlines can and can’t do to be of assistance. However I saw this as an opportunity to highlight some of the problems that arose for us when booking domestic holidays, and how in certain regions we had real trouble in guaranteeing the oxygen prescription was matched exactly as it would be if we were at home.
Despite there being a few instances, there was one real issue we dealt with through Baywater when I surprised my parents by booking us all a holiday to the Brecon Beacons. I had found a cottage in a quaint little rural village that was only thirty minutes drive from the Hay Festival and had plenty of sightseeing in the area that was suitable for Dad. At the time he had been on oxygen for about five months and was using around six litres (a minute) when walking around, though he turned this up and down depending on how much he struggled. However when we were out and about, the typical air flow cylinders you might have seen weren’t up to much use and didn’t last longer than about forty minutes and at best, we could only get hold of six cylinders a day which meant for replacements being delivered each day in turn so that he could comfortably venture out. However, as anything you can’t guarantee when they might turn up so this meant every other day we were sat at home waiting for oxygen to be delivered.
Thanks to our fantastic oxygen Nurse, a few weeks prior to going away she swapped the prescription to liquid oxygen as she recognised the need for him to have high flow oxygen always available and how restricting it was to be sat at home waiting for new deliveries. As liquid oxygen was delivered in a vat and cylinders could be refilled it meant we only needed deliveries one to two times a week, and with thanks to our brilliant driver, had fallen into a routine of him replenishing us each Monday and Friday. Therefore we had plenty to get through the week and plenty to get through the weekend which meant wealth of opportunity to give Dad the tools and the confidence to get out of the house. This was even more so brilliant for the holiday as it meant we could fully utilise our time away with it only being one week, and being rural meant most places he wanted to visit were at least an hour away from the cottage.
Here’s where the problem lies and for sake of ease, I’m just going to bullet point them below otherwise I’ll end up writing a novel and getting all “ranty” on you.
- When advised to ring up and let the oxygen provider know of the change of prescription, everything at first was fine. And there’s no reason it shouldn’t be! Their website clearly states that they are ONLY allowed to provide what has been expressed by a healthcare professional. In this instance it was liquid oxygen.
- However, after a few days we received a letter informing us that they would not deliver liquid oxygen as it was out of their jurisdiction, no driver would be available and instead we’d be tied to the house using concentrators and be limited to up to six air flow bottles a day.
- When trying to clarify this, the next excuse was that the driver delivering liquid oxygen was only in that region on certain days which didn’t match up with our arrival or departure date, therefore liquid oxygen was again not feasible.
- After extensively liaising with the cottage provider and finding an alternative location for them to drop off the liquid oxygen on the days that were appropriate to them, Baywater still wouldn’t provide liquid oxygen because health and safety in their region meant two drivers had to unload the delivery which meant again, you guessed it, liquid oxygen was not feasible.
- Four weeks later, a lot of phone calls, angry letters and having to calm my very anxious Dad that everything was going to be fine (more so because he felt incredible guilt that his essential medication was a burden on our holiday) and even having spoken to our usual at home delivery driver who was furious at the situation we had been put in, to the point he was prepared to go to his management and demand they get the alternative provider to sort themselves out…
- They finally let up and agreed to deliver liquid oxygen the day before we would arrive at an alternative address on the pretense that we didn’t move it to the cottage. Despite it being a ten minute drive each way to fill the bottles, there was no other option, so we agreed and made sure to inform them that we needed a refill of liquid oxygen before we would leave as Dad would need his flasks filling before the long journey home. Everyone was happy and to calm Dad’s nerves, the day before we departed, we rang the cottage company who very happily let us know it had arrived and would be waiting for when we got there. And with thanks to their extensive and truly appreciated help, we gave them a box of chocolates for going out of their way to make sure we could still get there.
So now we’re on holiday enjoying ourselves in the most beautiful summer sunshine of Wales and the Brecon Beacons. Dad had been to the Hay Festival all weekend where he saw his hero Simon Schama give a talk and then meet his next hero, Brian Blessed at a book signing. After my brother departed to go back to London we then ventured to Tenby for a gorgeous day on the beach, visited some National Trust properties in the local area and my parents had a day to themselves going for a drive and admiring the scenery. As we approached the end of the week, we once again rang Baywater to confirm that we would need our liquid oxygen vat refilled as per our request and as they had agreed upon. What was the response? Go on, have a guess…
The delivery driver isn’t available for another ten days to deliver to you and anyway, he can’t do that job without certain equipment which isn’t available.
Here I was, stood in a summers garden, listening to birds sing and watching the glorious world go by only for it all to be shattered in a small statement that punched me in the gut. I couldn’t speak, I was horrified I was having to go through this all again, but now it was ten times worse as the fear Dad always had of running out of oxygen was very real. In the end I couldn’t cope, in tears I gave my phone to my Mum as I just felt hopeless and as if they didn’t understand the gravitas of the situation. This isn’t waiting for a bed to be delivered or your Amazon package, this is someones life, their well being and their god damn health that they were shrugging their shoulders at.
What on earth could we do? We were to check out in two days and had only a small amount left in our back up cylinder which our usual delivery driver at home had advised us to use when driving in the car so as not to waste the precious liquid oxygen. Essentially we couldn’t leave the cottage because the only thing keeping Dad conscious and helping his lungs cope until the supposed ten day delivery slot would be the concentrators plugged into the wall, and even then they maxed out at four litres so he didn’t have enough to move around on with getting extremely breathless and uncomfortable.
What it did take was my Mum getting angry at them over the phone, she was as furious as me but unlike me didn’t hold back in showing it. Every attempt I had made to give us a much deserved relaxing holiday was being squandered because of their lack of compassion or urgency to understand our situation. Eventually she was passed through to management who had seen what an awful situation we had been through, they apologised profusely and the next day we received our delivery as had been promised. But this couldn’t help my terrified Dad who felt he was stuck in a situation where he would have to endure near five hours in the car with only very little oxygen. What if he needed the loo? What if he wanted to stop and have something to eat? He was trapped inside the car and left to suffer if it hadn’t have been for Mum’s assertiveness to demand they sort something.
Time passed, and I wrote a passionate letter telling them this was damn right out of order. They were a provider knowing full well that they had a right to deliver explicitly stated tools to people because that is what was expected of them. And yet they were abusing it by stating when and where they were willing to do it. I made a point of making them realise what it’s like to have to deal with so many unnecessary hurdles to just go away for a few days away, to have a break from hospitals and appointments and feeling isolated and trapped at home. Their response? A short statement from a managerial representative that stated they were limited for certain reasons (though he didn’t express what) and that they were entitled to change prescriptions if it was unfeasible for them to manage providing it. And a £100 “apology” gift voucher for Marks & Spencer.
We spoke to our usual delivery driver back home as to what happened, and quite rightly he was as furious as us. He went out of his way to give people exactly what they needed because he had to see and help these people everyday in his job, and yet it was all going to waste because people working in call centres were picking and changing the rules. He was more so furious because he knew of situations where this had happened before and yet nothing had been learnt from the mistakes. He advised as he did others and even had done for others, that if we were to go away again, ring our usual provider and request him to drive the distance to deliver what we needed. We never did follow up on this as we were able to get a Mobility car specifically to fit the liquid oxygen vat so we could transport it ourselves, but Dad was incredibly grateful at how far he was willing to go because he understood how vital his services were.
Of course people with oxygen or a huge range of medical needs should be able to go abroad and on planes, but when there is a lot severely lacking in being able to drive to somewhere for a holiday that you can’t guarantee support for, then maybe we need to start putting these providers to ransom to make them realise they don’t control who, what or where they are willing to help. When you can’t have a three day weekend in Whitby without getting bother from an oxygen provider as we did in Wales, why should it give any confidence to patients that they can or deserve to have any kind of holiday at all away from their own home?
And I know it’s not just us that have been dealt this blow, there are many more stories and I would love to hear them because I feel collectively, we need to let our voices be heard that oxygen assistance is a right, it is essential and no more should people be left fretting and worrying that they aren’t able to do anything at all because they simply don’t have the support. Please, let me know and get in touch either by commenting below or e-mail me at firstname.lastname@example.org and let’s figure out how we can make things better.