Well, it’s been the first few days back to work for a lot of people. You all absolutely needed my blog to chill and relax on Friday. Oops, so sorry I missed the date! It’s been Braggmania this week! What’s is Braggmania? No, it’s not the screaming fans who hounded the sixties band, the Braggles, in the 1960s. Braggmania is a condition that has been induced by Dr Bragg. He gave me a prescription last week! Mysterious? Yes! But what has happened? Have I been hibernating perhaps? Read on…
The house adaptation planning here, at Bragg Manor, is in overdrive. Bathroom estimates, another lift estimate and more. We also have had Occupational therapy (OT) visits to advise on recommended dimensions etc. This turns out to be a very debatable subject, and as I really don’t want parts of our house to look like a hospital, it’s a balance of function versus attractiveness. There is a lot to be considered. We have great OTs here in the UK, and they provide an essential service. As fans of planning, the more we discuss with professionals, friends and builders, the better. I am certainly not using Bragg’s Builders.
I also had my regular MND nurse assessment this week. The measurement of respiratory function is a critical indicator that needs to be monitored and I am thankfully still strong in this area! Always a relief.
Remember I mentioned in a recent post about applying for a UK government grant to help pay for these largely unwelcome and expensive adaptations? Well I have been refused a government grant. Although this was largely expected, and now enables me to move forward, the UK government process is rather flawed and untimely. This sort of thing annoys me and makes me want to do something about it for others who might hit the same issues. So what exactly are some of the issues?
The standard process for applying for what is known as a Disabled Facilities Grant, available from all local councils, typically takes a minimum of 16 weeks, and up to 6 months! Yes I said 4 to 6 months! As the majority of MND sufferers can go from walking to near complete paralysis in 6 to 24 months (in fact the majority are dead within 2 years) such a process is really not fit for purpose. In a world where we can order online and complete major financial processes from our settee, this is not good. There is also a rather unusual quirk that if you are NOT eligible (which can actually be established quickly), but want to reflect how much of your own capital you used to pay for the current disabled facilities in any future grant requests you still have to go through the same process, even though you get nothing! Further NO work is allowed to be started until grant process completion! Sorry about the exclamation marks, but how else can you express silly things?
This is the sort of process that just says to me “RIDICULOUS”. I feel for those in a worse condition than me, or those who are simply confused by bureaucracy (all of us at times). This is just an example where the actual efficiency of our local and central government services is more important than extra funding that is often called for by the media. So I am taking up a cause! Updates to follow.
Back to last week. In the news was the fascinating fact that Vinyl record sales are rising. Looking to capitalise on this Vinyl Explosion, Lord Lee Bragg has had me testing a mobile Vinyl player for bikes.
It does jump a bit, but the sound quality is amazing. All was going well until I turned a sharp corner and my complete Cliff Richard collection spun off the holder and caused some rather nasty injuries to passing pedestrians. Just imagine a 12 inch Vinyl Version of “We don’t talk anymore – Live edition” coming at you at great velocity! Terrifying! I have told Lord Lee to go back to the drawing board.
After the quiet Christmas and New Year break, the unsolicited emails from the Spammers are back! It turns out that even cyber criminals have holidays. So I now have my regular “Book your funeral plan today” and “Would you like to meet Brazilian girls in your post code area” emails. Just how many desperate Brazilian ladies can actually reside in my post code in Hampshire!? Mind you, there is dear Angela, who is about 80 and has more walking aids than me. She does have a slight South American look about her, and I thought I heard someone call her Angelina!
Back to the grindstone. In the UK our beloved NHS is criticised constantly, and also the need for massive new funding is always hailed as the panacea to every single problem. Anyone who works with complex systems knows this simply just isn’t the case. Efficiency is vital to scale a complex vital organisation like the NHS, and with only increasing demands, radical transformation is needed. A lot of this going on, but it somehow doesn’t make the news.
But last week an absolutely super example of an improvement which if you work in manufacturing, be it car building, plane building, electronics or other, you would be staggered to believe isn’t already in use within the NHS.
Initially being promoted as a way to help prevent the 150 avoidable deaths in the health service, for example operating on the wrong patient, wrong limb, incorrect drug prescription etc. Scan4Safety is using barcodes on all items to enable tracking/validation. However, it is far bigger than this. Nurses and many other health staff spend on average an hour a day locating, checking and prescribing drugs for example. Removing this time frees up for more direct patient care and is vital in enabling the scalability of the NHS. This is a great innovation and failed to make major news.
Finally this week a medical/science story about hibernating animals. I think Dr Bragg listened to this programme, as he sprayed a gas near me the other day. This is why my blog is late, the idiot!
The Big Sleep was a very interesting radio 4 program that discussed the metabolism and natural history of animals during hibernation months.
There were two really fascinating pieces of information. Firstly, hibernating animals actually slow their hearts so significantly, that metabolic processes are effectively optimised during hibernation. This is now being investigated as a way of slowing human hearts after trauma critically allowing more time to treat where currently a surgeon may have only minutes before permanent brain damage.
But the second, really fascinating fact about hibernating animals is that they don’t lose muscle mass during their long period of inactivity. We, on the other, hand lose vast quantities of muscle in only a few days after forced rest perhaps following a broken bone. What is different? There is potentially a genetic element to this feat. Yet another avenue for investigation for neuro muscular disease therapy! Interestingly, what has been shown so far is that the genes involved appear to be common across hibernating and non hibernating animals. So it is something to do with genetic regulation. How interesting. My “Use it or lose it” mantra may need reassessment!
I should have my MND research update out later this week.
I will also try to get back to my Friday post next week, once this Braggmania has worn off!
Have a good week all.