Money

Just when you thought I’d left you alone on your Friday evenings…………………. Sorry folks, I’m back, but don’t despair, this isn’t a long post. I thought long and hard about whether to post this update or not, it probably won’t be to everyone’s taste or agreement, but hey ho.

Some time ago it was mentioned that I used a fair amount of acronyms or technical terms when I’m writing my blogs, so to start with here’s a key for what is likely to come up this week.

·         HME – Heat and Moisture Exchange – this is the filter I use to regulate the air into my lungs.

·         Stoma – The hole cut into my throat to allow me to breath.

·         SALT – Speech and Language Therapists.

·         CNS Nurse – Clinical Nurse Specialist.

·         OBR – Old Bath Road.

·         RTFM – Read the F**king Manual.

·         LUNA – A specific base plate designed for use at night.

·         LARY Club – the few poor souls who’ve undertaken a laryngectomy and who meet up to chew the cud.

In the couple of weeks since my last update I’ve been feeling pretty good as far as my health is concerned. I had my monthly consultants meeting at the hospital, which went well, albeit with a Dr. I’d never met before and who hadn’t actually got my notes to hand. I then saw Susan in the SALT team to discuss my stoma feeling a bit sore and the bone around the area feeling a bit bruised. We discussed the types of base plates I wear and how long I’m wearing then for with the HME’s. Susan’s advice was that really I should be giving my skin a rest at least twice a week and just wear a protective flap over the stoma when I sleep. Now read on and bear in mind the italicised text was written when I was feeling a bit pissed off with the way I felt I was being treated by a key supplier………….

On Thursday I was invited by the company who make the vast majority of the kit I use on a daily basis, to allow me to breath, to attend a presentation at Reading Town Hall to discuss ways of making sure your Stoma and HME are working as well as possibly during the winter. I did think that the middle of February was perhaps a bit late for the subject, but decided to attend as I’d missed their last presentation. I turned up with no real expectations, other than perhaps I’d learn some tricks of the trade to perhaps help me next winter. I’ve suffered quite badly since November, the cold air really plays havoc with my lungs, and being outdoors for any length of time in the cold weather is really to be avoided. Scarfs don’t work as when the HME is covered I really struggle to get air in properly. On entering the room in the town hall I was greeted by two other Lary users, one whom I’d met in my Lary Club meeting last September, the other I didn’t know. The only other person in the room was the Rep. from the manufacturers who looked relieved to see another willing victim of her presentation.

I’d hoped that the session would be a “Meet and Greet” type affair, a cup of coffee, chat around the water cooler and then make excuses after 30 minutes or so. I was to be disappointed. The Rep. explained that she’d be making a two hour PowerPoint presentation on the benefits of wearing some form of HME 24 hours a day, my heart sank.

The HME is a nifty bit of kit. I’ve got three different types I use. The FreeHands, which as the name suggests means I can speak without covering the filter. A normal “Push Filter” system and finally the “Luna” night filter. They all work in roughly the same manner. The filter will have salt covered foam behind it, this works in two ways. When I breath out, the filter catches heat and moisture, when I breath in the cold air is caught by the expended heat and moisture and warmed up before hitting the lungs, stop me if I’m being too technical. Basically air needs to be at around 37 degrees and 100% moisture before it hits the lungs to allow them to function properly, too cold or not enough moisture will result in a chest infection at best.

Of the three Lary users at the meeting, one was a 20 year veteran, the other over 10 years, and me at 8 months, but an educated 8 months. The first 20 minutes of the PowerPoint really was teaching your Granny to suck an egg. It was around this point that the lightbulb clicked on in my brain. The Rep. kept mentioning about how her Company spent so much on research and development and that their competitors were cash strapped so couldn’t do the same. At this point she introduced the Luna system into the conversation, almost seamlessly. If we’re wearing an HME filter then we also need to use a base plate to keep in in place, don’t worry, there will be photo’s at the end. Wearing a base plate over the Stoma all day, every day, can be a bit tiresome as it will probably irritate the skin and can cause painful sores. The Luna system is designed to keep any irritation down to a minimum by having a sort of soothing effect on the skin, it’s probably witchcraft for all I know. 

I’ve been using the Luna system since the end of October, not every night, but probably four out of seven nights. The other three nights will either be flapping free or a slightly softer base plate then the one I use daily. The Rep. was adamant that research, undertaken by her company, who supply the kit, had proven that HME’s MUST BE WORN 24 HOURS A DAY.

My Consultant, who I trusted with my life, and my CNS Nurses who’ve seen me smile, cry and all emotions in between, have both said that giving the neck and Stoma a rest from a base plate is a good thing and will cause no problems whatsoever. And as previously mentioned, my SALTs had also said the same thing the previous week. Now, who am I going to trust on this one? Someone who’s paid by a company to sell their products, or three (+) Healthcare professionals who have no financial investment in the product? I’m a cynical old Hector at times.

The Luna system is ok, but in my mind it has its flaws. The HME’s are a slightly smaller size than all others, despite the four different manufacturers agreeing to make them all a standard size. When I questioned the Rep. about this she claimed it was so that the users didn’t use them in the day time, well that’s just bollox as you can hardly speak using them so they’d be pointless, maybe they’ve been designed to be smaller so that the Lary user has no choice and has to use the bespoke HME? It’s also a pain in the backside to put on. I mentioned this to the Rep. and her initial reaction was that I must be doing it wrong, well thanks a bunch, I’ve been following your employers instructions. She gave me an example to show how I was using it, and conceded that my way of application was exactly how it should be done. She couldn’t explain why to apply this base plate you need to complete three actions, when on the other base plates you only need to do one. That cynical old Hector in me just kept coming up with the same answer “Price”.

Throughout the whole meeting she kept reiterating that the NHS / GP can’t deny us any of the kit that her company supply, we can DEMAND that it’s given to us. After about the forth or fifth time she said this my hackles started to rise. Her pitch smacked of raising as much profit for her employers as possible and sod the actual needs of the patients.

I’m on my sixth different type of valve thanks to the dedication of the SALT team who look after me, they’re not thinking of the cost / profit margin. No one is questioning the kit I have to order each month. I’m costing the NHS a bloody fortune each month, but I’m not a patsy, I’ve got a brain and I can easily see when someone is trying to play the three card trick on me.

Two of us left what was supposed to be an informative presentation, but what turned out to be a “Timeshare” sales pitch early, I suspect that neither of us will bother return for next month’s sales pitch. Throughout the 90 minutes of so I was there, the only mention of protecting the stoma from winter weather was to wear a scarf, which is pretty difficult to do when you breath through your neck.

Now this update may just appear to be me sounding off, after all I do use the companies supplies and apart from the God awful delivery problems (yes, the suppliers are owned by the manufacturers!) I’ve generally been happy with the products. What’ got my goat is the blatant way the meeting was just an excuse for a sales pitch for a new piece of kit which would have a far higher profit margin than most people’s current choice and held no relevance to the proposed subject of the meeting.

 LUNA Base Plate

Xtra Strong Base Plate

Standard Base Plate

Protective Foam Flap (To cover the stoma at night)

As I said at the beginning of this update, I’m feeling quite chipper. My weight is on the up, I’m over 83kg for the first time in over two years. My appetite is probably at an all-time high. Porridge for breakfast, cooked lunch and full dinner supplemented by snacks seems to be doing the trick. Carol and I went to Nino’s in Pangbourne earlier this week and I managed to clean the plate and have room for a pudding too, I’ll have to buy 34” jeans soon if I’m not careful. I don’t want to tempt fate, but my valve is now going into its sixth week, a record for me, with no sign of leaking. Maybe the time and effort the SALT team have put in is beginning to pay off.

In other news, Neville is getting to be a slightly calmer dog and is certainly benefitting from the puppy classes he’s been attending for the past four weeks. He’s also got an appointment at the “Doggy Dentist” for the end of next month when he’ll be losing a couple of bits and pieces, not from his mouth though.

Finally, the rugby season is beginning to come towards its conclusion. It looks like Rams will finish either third of forth in National 2 South, a superb performance for this young side and a great result for Seb Reynolds in his first season as Head Coach. Tomorrow I’m off for the long trip down to Barnstaple to watch the boys play and no doubt be on the end of another rib breaking hug from Verity.

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder