I have always loved photography. Back in the 1970’s an era that I have read in the history books, OK an era I lived through, I first discovered it. In those days it wasn’t digital, no, you needed chemicals and enlargers to process photos. I took and processed black and white photos. As a photographer I was always trying to capture that perfect moment, to freeze that moment in time when everything looked so beautiful or dramatic or interesting.
My first job was at a photographic studio in London. I worked in the black and white processing lab. We hand processed and printed the photos from the studio and also from other professionals. This included some smaller magazines that didn’t have their own in house facilities. So I would often be printing dramatic, news worthy pictures of people. One common feature of these was that it caught the person in a pose or a moment that ‘said’ something. Think about the cover photos on magazines and newspapers or posted on social media. They freeze time at the point of the photographers choosing. That frozen moment could be funny, dramatic, sexy, idiotic, stupid, poignant, sad… well you get the idea. Here’s the thing though, it’s a snapshot taken in around 1/60 of a second. So a very brief moment of time. It can be that fleeting a moment. But once taken it is then able to be studied at length, commented on, laughed at and criticised.
Here is why I have written this blog. I saw a set of two photos that are the marker photos for a video of an advert for George clothing. They are of a young lady with ME who, according to the tag line did the photo shoot to raise awareness of ambulatory wheelchair users. That’s people who have wheelchairs but don’t have to use them all the time. I assume the awareness she is wanting to raise is that some illnesses can be just as limiting even though you don’t need to be in a wheelchair all the time. The words that accompany the picture certainly give that thrust. But a picture, especially a snapshot is far more powerful at affecting ideas than the accompanying words. So what do these snapshots show. One shows the young lady balancing unsupported on one leg, in a dance pose, the other shows a different dance pose alongside someone else but equally difficult and strenuous. If it wasn’t for the wheelchair behind her you would just assume it was the picture of a dancer. In neither picture is she touching the wheelchair. She does in the photo shoot and video generally, but remember this blog is about snapshots.
What message do two snapshots give? That a fit young lady likes to dance by wheelchairs? If you read the caption and know she has ME, then you modify that to something like: ME doesn’t stop you dancing, or you can be just as fit and strong in your legs with ME as without. These are of course nonsense conclusions about ME. It is an illness that dramatically limits the body’s ability to exercise. A repeated action, by repeated I mean 2 or 3 times can totally exhaust a muscle in someone with ME. Most people I know with ME would struggle to balance well much less dance. It is an up and down condition, but even on its best days someone with ME does not feel up to dancing around. Plus the effects of such a thing would put an ME sufferer in bed for days afterwards.
The problem is that ME or CFS as it is now called is a diagnosis of exclusion and many conditions can end up with that diagnosis after excluding other things. There isn’t a single diagnostic test for it. I am not very happy with the way doctors hand out the diagnosis. It seems a way of preventing them having to keep investigating. I speak from experience. I was given a diagnosis of ME in 1994, no MRI or very many tests at all had been done to rule other causes out. In 2007 further tests showed that I had peripheral neuropathy caused by long term nerve damage from pernicious anaemia undiagnosed in the 1990’s. It wasn’t until 2015 that a full MRI was done and showed further spinal complications. So you will understand when I say ME is not a brilliant diagnosis. I have no idea if I ever had ME because those other conditions have very similar symptoms. Had they been looked for and found in 1994 would they have said ME? Who knows, I realise one can have multiple problems.
Back to these snapshots. If you freeze a moment in time you are going to give people a picture of that moment. Whatever the lady’s intentions were. The result will be that people will see a healthy young lady dancing by a wheelchair with a headline that tells them she has ME. This will feed into an existing prejudice that says many illnesses are false, many people in wheelchairs could walk but choose not to. It will pour oil on the fire of disbelief. What it won’t do is make people think, ‘oh yes, of course some people can still struggle to stand or walk a little when ill, but still need a wheelchair at other times.’ That’s the message she wanted to put over. I would have thought standing by the chair would have put that message over. But what photographer is going to take that picture.
(If you haven’t got a sense of humour, don’t read this)
The trouble with wheelchairs is the wheels. Obvious I know, but true nevertheless. You can’t go up pavements, stairs over deep mud, snow or up mountains. We need a means of getting about that mimics the human leg. An exoskeleton that supports the whole body. Anyone who has seen Iron Man will be ahead of me here. In fact you will have overtaken me and headed back to the changing room laughing. OK, so there are a few problems. We don’t have the technology, huge cost, the power source in his suit is make believe. It has a computer that is beyond unbelievable. Hey, who’s counting? Oh you are. Well bear with me.
There are some positives to the idea. Just think about it. You wear an exoskeleton of metal that basically does all the standing, walking and who knows maybe flying for you. Imagine the possibilities you are out walking, yes walking down the high street. Someone goes to push your disability equipment without your permission (your Iron Man suit) and you fire one of those hand lasers. No ifs or buts, problem sorted. Someone gets shirty about your disability or questions your having a Blue Badge, mind you with an Iron Man suit… anyway you blast a hole in the ground in front of them. Argument ended! Or maybe you just fly off; dramatically.
Just think of arriving at venues. No more queuing up, you just fly in and land centre stage. Of course it would be a bit bulky to wear all the time. But the suit would just fly off into a suitcase, like in the movies. Then when you need it, you press a button or call your computer butler and you are in it again. No hoists or helpers, all automated.
There may be slight issues of cost. Perhaps the NHS might baulk at funding the many millions each suit would cost. So maybe a voucher scheme? Fundraising? Anyway I can’t think of everything, I am just the ideas man. Did they say to Edison, ‘no one would be able to afford to electrify their home?’ Well, probably, but that’s not the point. Cost isn’t everything, OK so maybe it is rather important.
Exoskeletons are most definitely the way forward. Fully supporting and doing the work of walking, running, flying, fighting, oops I mean whatever, it could be washing up rather than fighting. Imagine the skies filled with flying ex wheelies. What would we call ourselves, Flyees? The mind boggles and I hope chuckles. But there is a serious point to my nonsense. Some form of exoskeleton might work, not Iron Man style, but a body fitting and supporting robotic aid. Maybe a future idea.
I like Jane Austin, there I’ve said it, get all your ridicule out of the way now. Oh, you don’t have any. I really like Jane Austin, she was an author ahead of her time. Humorous, clever, insightful and radical. She was able to put over ideas about gender inequality in a way that even men at the time found acceptable, didn’t they? Well they should have done. She has a timeless quality and her books have been re imagined in so many ways.
Sense and sensibility is one of my favourites, along with
Pride and Prejudice. In Sense and Sensibility Jane contrasts a sensible sister
with an overly emotionally sensitive one. It can appear at first reading that
the sensible sister, Elinor, is the heroine the one we are to see as right.
Marianne, the overly sensitive one, seems so flighty and over emotional that
it’s hard to emphasise with her. But, as in real life both sisters are on a
journey. Marianne needs to gain more sense, but Elinor needs to get more in
touch with her emotions.
Why on earth would I quote from that book? What relevance is
there to me or you? I have been reading a lot of posts on disability ‘wheelie’
sites about comments non wheelies make to my fellow ‘wheelies’. I have also had
a lot of, well let’s say ‘insensitive’ comments made to me. It got me thinking,
‘how do we respond to ignorance and insensitivity?’
It seems to me we can often be like one or other of the
Dashwood sisters, Elinor or Marianne. Either too sensible or too emotional in
our response. The sensible being to ignore the person being insensitive. The
emotional being to get angry and upset, then shout or be rude back. Then it
struck me maybe a better way forward would be somewhere between these extremes.
Emotions are going to hit us, how can they not. If someone says something
stupid to us. Accuses us of malingering or acts as a disability police, or
maybe just pushes us unasked in our wheelchair. But we don’t have to respond to
that feeling. We can draw on our logical, sensible side to realise that it is
ignorance that causes such comments. How can people understand what they
haven’t experienced. How can we blame people for believing the lies in the
media. We need to help people understand, teach, explain, use our emotional
response to drive us into a passionate defence of disabled people and our
sensible side to prevent ourselves just ranting and getting angry. The world
needs to gain insight into disability; not gain more reasons to shy away from
disabled people.
The point of this post is a plea to my fellow wheelies. When
you meet ignorance, pause, count to ten and think before responding. I know
it’s tempting to respond like for like. To meet ignorance with ignorance. It
can feel good to have a great cutting remark in response to an idiotic remark.
But; if we are to change the hearts and minds of those around us, it can only
be done through insight and knowledge. Communication is the key. People gain
knowledge and understanding partly through hearing, partly through seeing and
partly through experience. Do your part to help them understand.
If you are not disabled or limited and reading this then my
plea to you is stop and look, listen, think. Try to put yourself in a wheelchair,
buggy, hospital bed. How would you feel, day after day, limited, and
frustrated. How would you feel when your moves and choices are so closely
monitored and others feel the right to judge you and test you at every turn. Don’t
jump to conclusions.
Communication and understanding will change things. Let’s
not give in to hate or anger. Let’s take hold of our sensibility (emotional
response) and use our sense to make an informed response to what happens around
us. That applies to both disabled and able bodied alike.
Is quality a thing of the past? That seems a stupid
question, after all everywhere you look things are advertised as luxury, professional
or pro for short. Advertising tells us that things are built better, stronger,
more durable… yeah right, we all believe that don’t we? In fact we have become
the quality control department for most products. Instead of manufacturers checking
them, they are sent as is and fail in our home. We then send them back or bin
them. Built in obsolescence. Never mind the lack of quality feel the short product
life.
I have an NHS power wheelchair it’s a Quickie Salsa M2 and I
am really grateful to have such an amazing tilt and tip wheelchair supplied. It’s
transforms my life. But I cannot ignore that it seems to be very poorly made. I
have had it for a year and well within that year the frame started to move
alarmingly, what I mean by that is it’s become loose and rickety. Add to that
the paint peeled so badly that rust was the main colour visible on the frame. I
wonder if the NHS commissioners request poorly built? Obviously not, and when
you consider that this chair is available privately and cost about £7000 for the setup I have, I do wonder at the
excuse Quickie would have for what appears to be poor quality manufacture. I
know the NHS get them for more nearer £4000 so do you think Quickie USA have
two production lines? One that only applies one coat of poor quality paint and
uses low quality parts that go to the NHS and a better line for private? I am
of course joking, well half joking, they will make only one version. I can’t
see how the NHS who are paying companies like Quickie millions of pounds can
get such seemingly poor products from them. What is happening with the people
who select these companies? Do they check on quality? Don’t tell me they are NHS
products I told you these same chairs are available privately. They are merely
bought by the NHS.
Don’t give me the argument about it being better if a
private company is involved either, because I got my wheelchair through a
private Company used by the NHS, Milbrook. So if private companies are really
the way forward to drive up quality through competition and quality control I
would be saying how wonderfully built my chair was. No, in reality all that
privatisation does is add a profit layer into the mix. So that someone has to
make profit out of the transaction. Ergo the end product has to be of a lesser
quality because the amount of money being spent is the same, the product needed
is the same, but someone in the middle is making a profit. Corners are
therefore cut.
My first wheelchair was from a non privatised NHS wheelchair
services. It was a custom built push wheelchair. It was really well made and
lasted for years with no paint flaking off and nothing getting loose. Draw your
own conclusions as to why the quality has dropped. Defend privatisation if that
is your belief structure. I see no actual evidence it benefits us as users.
My guess is that my current chair will fail in a year or two
and need to be replaced. The cost of that to the NHS and in hassle and time to
me will demonstrate the folly of trying to cut corners on quality. Build a
better chair in the first place, one that lasts and you repair it less and
replace it less often. Car manufacturer’s learnt that years ago. They used to
put very few layers of paint on. Cars rusted almost as soon as they left the
showroom. Now cars are sold which boast of 7 and 10 year rust free warranties.
Car parts used to fail within months, now they last much longer. The car
manufacturers want people to keep buying new cars, but they do that by making
new cars attractive and second hand cars hold value for re sale. Wheelchair
manufacturer’s seem to have a very short term vision, sell their chairs to the
NHS or desperate people who need them. Longevity of the chairs does not seem a
factor, that is how it appears to me. Prove me wrong manufactures, show me how
well you build your chairs.
That will not change until wheelchair users make a hue and
cry and the NHS start to complain that they are not happy with the high failure
rates. CCG’s (clinical commissioning groups) do you even track the failure
rates of wheelchairs?
My fellow wheelies (wheelchair users for those who don’t
know) take note of this. If you are an employee of the NHS and have any say in
this process take note of this. If you are reading this in another country and
have similar issues, take note. It takes a massive backlash to companies before
they sit up and take notice.
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In ‘Star Trek Beyond’, The Star Ship Enterprise is attacked
by thousands of tiny ships. It is destroyed because there are just too many to
fight. In Star Wars ‘The Empire Strikes Back.’ The strategy of the Rebel Alliance is for tiny
ships to get past the major defences of the Death Star and attack it from
within. In WWII one of the most effective weapons against the German forces were
the many myriad of resistance fighters on the ground in occupied territories.
They cut off supply lines, disrupted communications and generally caused
confusion enabling a more effective attack by the main allied forces.
We are all familiar with the analogy
of illness and disease as a battle. We talk of fighting illness, beating
disease. Overcoming cancer. But not every illness can be fought and not all
battles are seen. Many of us are being attacked by unseen forces. We have
covert forces, fifth columnists, guerrillas, undercover operatives, spies
working against our systems. We have nothing to fight and nowhere to aim our
defences. It’s as if we are being attacked by small bands of resistance fighters
disrupting our systems, or a small band of fighters has undermined our main
defences and gone straight for the main operating mechanisms of our body. Or it’s
like we are being attacked on so many fronts at once by such small individual things
that our bodies are swamped and overwhelmed. Or perhaps all the damage has
already been done, by disease, accident or injury and it’s irreversible.
Without warning we might wake one
morning with a new weakness, increased pain and limitations. Instead of supply
lines being cut off by resistance fighters, we have nerve endings interfered
with or blood supply affected. Instead of star fighters undermining a large
ship our body is undermined, our muscles are weakened, and central nervous
system messed up. These things don’t respond to the usual fight response, in
fact for those of us who suffer from such hidden attacks, our immune systems
have been attacked first. So, a full-fledged response is just not possible.
Where the attack has already happened, we are left reeling, looking at the
aftermath.
We all love a good Hollywood
block buster, don’t we? That point in the story, like the ones I mentioned
above when the tables turn. When impossible odds are reversed, and the battle
goes from being lost to being won. I am studying screenplay writing through an
online course at the moment. It’s a short one that’s free online, supposed to
be 2 weeks, but has just a few hours work in it. One thing you pick up fast on
this course; we all know it already. Movie scripts are shaped into a pleasing
form. The protagonist (hero/heroine) wants something, there is an obstacle to
them getting it, they fight through and get it.
We know that in life many people
want or desperately need things and most times people die without ever getting
those things. I don’t mean to be negative, just realistic. I am not being defeatist
to say that there are certain illnesses that you cannot fight. That once damage
is done it’s often irreversible. There are times when giving up is OK; not just
OK but positively helpful. You will find rest and peace if you stop fighting a
lost cause. Stop banging your head against a brick wall. I have found that; I
stopped fighting this illness a year or so back. Since then I find I can cope
better, feel more peace and have more energy, mental and physical. Because I’m
not wasting it on fighting the unwinnable. I still can’t walk or stand, but I
am having fewer collapses and feeling brighter in between.
Not all battles are won by
fighting. Not all victories are by overcoming the enemy. Sometimes a victory is
in learning to live within your limits. Sometimes winning is to find a place of
peace and acceptance of your situation. If you are newly disabled or have been
for a long time but are fighting a losing battle against it. Listen to me on
this; is the battle you are fighting winnable? If not, try accepting where you
are and look for the good in it. Try to find a place of peace and calm amidst
the storms of pain and limitations. Search for the new meaning in your life. Remember,
if you have fought and fought and all you have achieved is exhaustion and
despair, maybe try acceptance. It isn’t giving up, it isn’t hopelessness.
Acceptance is finding the new
paradigm for your life. Accepting that change is painful, but not all bad. You
are not a loser if you stop fighting, you have won, because you have overcome
your disability by adapting to it. Sometimes if you cannot go through a wall,
you can go around it. If the wall of your illness is too high to climb, go
around it. You will find that the other side is not as horrible as you imagine.
There is hope and a future even in limitation. Stop fighting and search for
that.
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Do comment or get in touch with me. If what I have said
has touched you I am happy to chat.
There’s a comedy with John Cleese that has a great line in it. At a point in the story when the main character is almost ready to give up, he says, “it’s not the despair Laura, I can cope with the despair, it’s the hope.” By which he means, if he could just give up on trying to get to the headmasters’ conference in Norwich, the aim of his quest, then he could relax and let go. The despair he would then feel would be bearable because he would no longer be fighting. I understand that feeling very well.
Poster from the movie clockwise
Illness is often characterised as a fight, we talk about
fighting against cancer, fighting a disease, we even fight a cold. We
congratulate people who ‘overcome’ an illness. In cancer wards there is often a
bell to ring triumphantly at the end of treatment. We celebrate and see a
victory in overcoming illness. Now don’t misunderstand me, of course it is
brilliant when people get well, and we should celebrate that. There are definitely
illnesses that respond to being fought against. I also know that the mind plays
a big part in all illnesses, so positive attitudes help in getting well,
whatever is wrong with us. But there are also illnesses that do not respond to
fighting. There are illnesses actually made worse by fighting.
Have you ever seen or heard of a Chinese finger puzzle? It is a tube that goes over two fingers, one on each of two hands. You then try to pull your two fingers apart. The harder you pull, the tighter the tube grips them. This is because the tube is designed to compress onto your fingers as it pulls apart. The only way to remove it, is to stop pulling, stop fighting, to actually push back the other way and remove it. Another illustration would be sinking sand, struggling makes you sink deeper. There are things made worse by fighting and struggle, and that is true for several illnesses too, as I know from experience.
Chinese finger puzzleAs you pull fingers apart the puzzle/trap grips more
You can see that an illness like that makes you look like a
quitter. Because the only way you improve is by resting, stopping, what appears
to be giving up. The only way to improve at all is by not fighting it. It’s
counter intuitive and contrary to the way of the world. We are brought up,
especially as men in my era to be fighters. We are told to try hard, push
forward, try and overcome. When we have a cold, everyone’s attitude is to ‘suck
it up’ and carry on. So why not be like that with all illnesses.
Here’s the thing, I am, and I was a fighter. I was first ill
in 1990 and I carried on working, fighting, ignoring the illness. It’s both the
advice I was given and the type of personality type I am. The effect on me was
to make me worse and worse. I was physically strong, oh yes and often stupid. In
the 1980’s I loaded a moving van with all our family’s possessions single
handed, upright piano and all! There was no tail lift on the 7.5 tonne van, the
only thing I could not load on my own was the washing machine. I had to get
help. With the piano I put one end on the van and lifted the other up and slid
it along. The washing machine was a dead weight and the van too high above me.
I used to move car engines around without hoists. Yes, I was young and stupid.
I am not showing off, I am saying I pushed myself beyond. When I had pleurisy
in one lung, I drove, in agony, from South Wales to Scunthorpe on Christmas Eve
so the family didn’t miss out on Christmas celebrations. Yes, I was in hospital
that night, but I made the drive, in agony. Illness does not easily stop me. I
am not a quitter.
Yet illness felled me. I could push no more. There are limits
to human strength. I am not superhuman. I get so frustrated when people say I
should pull my socks up or look at things differently or that illness can be
overcome by positive attitude. These are such stupid comments. Not every
illness can be overcome by attitude or strength. If positive thinking could
make any difference, then I would never have been ill. If strength would help,
I would not be ill. There are some things that just cannot be overcome by positive
mental attitude or by fighting it. There comes a time when giving up really is
the best and only option. Then at last you find rest and peace. Then at last
healing can begin. I come back to my opening quote “It’s not the despair, I can
cope with the despair, it’s the hope.”
Once you realise that all the fighting in the world is only
making the illness worse, then coming to terms with it and learning to accept
it really is the best way. Yes, you have to go through the despair of realising,
‘this is it.’ You may initially rail at the frustration of your limitations,
but in the end, you can come to a place of peace and actually start to feel
better. I have found that once I got through that period of angst and kicking
against the limitations, I could make the most of my circumstances. Once I
stopped wasting the little energy I had on anxiety and frustration, I could use
it to enjoy the day.
If you have a similar illness that is not improved by
fighting against, then learn from this. Stop fighting, accept your limitations
and find the good things within your limitations. Obviously, this doesn’t apply
to illnesses that you can fight against, but only the ones you can’t.
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Lying on the bed in an anti-room of the neurosciences ward, I’d felt some trepidation. Electricity and I have never been great friends. You might say we were no longer on speaking terms, ever since 1989 when 415 volts 13 amps of electricity tried to kill me. OK, maybe it was my foolish oversight, but being electrocuted and burnt by a washing machines mains capacitor was quite enough to put me off electricity for life (See my blog “Ambulance Transport” for the details). I had therefore not been very happy when in 2007 a neurologist referred me for a nerve conduction study, and I discovered it involved running electric currents along my arms and fingers until they jumped. Yes, it hurt, not really badly, but it was the reminder of the previous electrocution that was the worst part.
Now 12 years later and in a declining health condition my
current neurologist wants to rerun those tests to see what has changed. I’ll
tell him what’s changed, I now know what’s coming and I worried all the night
before.
So, lying on the bed awaiting the test I was practising meditation. I’m hoping practice makes perfect and that at some point it will work. Actually, I can relax quite well when I set my mind to it and that’s what I did.
Waiting for the test
I am going to back track at this point, as the process of
getting to hospital in a limited state has its points of interest. If you think
preparing to go to a hospital appointment is complicated generally, try it when
you have limited mobility.
First, I must call the hospital and ask what tests will be done.
If they need to test me lying down or sitting up, then if it’s lying down, as
this was, do they have a bed available? If they have a bed, do they have a
hoist to transfer me from my wheelchair into the bed? If they have no hoist I
will have to arrive on a stretcher and a banana board is used to transfer me.
Then I need to book an ambulance with stretcher transport. Which takes a while because
they ask a lot of questions about why you need it. I then make sure there is a
bed available on the ward and tell them I’m arriving by hospital transport. Next,
I must change my carers timing. Because the appointment time would clash due to
allowing enough time for being ready early. When you get hospital transport you
have to be ready two hours before appointment time, that’s if the appointment
is nearby. When I was going up to Liverpool, I had to check a leaving time, as
it took 4 hours to get there. Before I was on the latest medication, I didn’t
have the concentration to do any of this, so Mary sorted everything. Even with
the new tablets, which help my focus, I still get absolutely wiped by this
process and it is the only thing I do in a day, organise the trip to an
appointment. This all happens weeks before the actual appointment.
Back to the day of the appointment. While we were waiting Mary took a phone call, checking parking and confirming the time of arrival. Always very helpful for me as I get anxious if I am waiting for an unknown time. My appointment was at 12pm and the two ambulance crew members, a lovely couple of ladies, arrived a bit before 11.30am. Those who follow my blog will know that our house is not big and so a stretcher, which I needed as the test involved lying down, is difficult to get into the house. The crew got it through to my bed with a bit of jigging, the bed, not them. Then started to get the stretcher prepared ready for me to transfer onto it. One of the ladies recognised me from my blog, I am famous at last. Holding back on signing autographs, that for some reason she didn’t ask for, I hoisted up from my bed onto the stretcher. I was swaddled onto the stretcher with straps and a blanket. This is done so that if I have a collapse on route, I don’t end up with my arms hanging. I also had on the neck cushion that keeps my head from lolling. Fortunately, I am very light, which makes it a puzzle as to why the crew heaved so much on slopes and corners. I know the BMI says 14 stone is obese for me, but that’s crazy. After much tricky negotiation the two ladies got me through the tight doorways, round the sharp angles, up the inner ramp and down our bumpy alley. Then onto the High Street where the ambulance awaited.
Hoisting onto stretcherOn stretcher and strapped in
If you have never been wheeled out into the High Street on a
stretcher, let me just say, you have never lived. I used to think the most
embarrassing thing would be using a wheelchair, until the first time I was
wheeled on a stretcher in Wellington High Street. There is something about
being in bed, that feels like it should be inside. I don’t know why that is, lying
down, in a blanket just feels like an inside sort of thing. Obviously when you
have a major accident or emergency you are wheeled on a stretcher publicly; in
that situation you may not be very aware of what’s happening. But remember I
was being transported that way because I needed to be tested on a bed. So, I
was awake and aware, oh yes, and embarrassed. Red has always suited me though.
On Wellington High Street
We arrived at Musgrove after a very smooth trip, the ambulance crew parked around the back so that we were on the correct level and didn’t have to go up in a lift. The first thing that hit us all as we entered Musgrove was the smell of lunch, they were obviously having smoked fish. I say obviously, but it could have been any fish from fish fingers to smoked.
At Musgrove
There is something very nice about arriving on hospital
transport. It makes up for a lot of the inconveniences. Because the ward has
advanced notice of your arrival, you often go straight into the side room that
you will be seen in. That happened this time. I still had to wait for the
doctor. Next came the transfer from stretcher to hospital bed. At home I used
my hoist to transfer onto the stretcher, here I had to be slid on a banana
board. I had on my day sling, which is a polyester sling that covers all my
torso. This has straps which they could hold onto and pull. There were three
people in the room, two ambulance crew and a nurse. Here I had confirmation I
am not obese, they called just one more member of staff. A year ago, when I was
transferred into the MRI machine, they called a total of 8 people! I must be
half the size, mind you I have lost weight. The 4 of them transferred me easily.
This involves lining the two beds up close and same height, slipping a board
under me, pull across and take board away, simples, for me anyway.
I didn’t have long to wait for the doctor. She asked me some
medical history questions and then started the test. She attached electrical
contacts to parts of my body starting with my feet and asked me to say when I
could feel a pulse, while recording the results on a computer. After I felt the
first pulse several more followed. She repeated this at different points on my
feet, lower and upper legs, arms and neck. At some points she warned me that I
would feel a whole series of pulses in quick succession, at others that my arm
or leg would jump, they did. If you have ever used a TENS machine or one of
those electrical stimulation exercise machines, that’s what it feels like. I
would not describe it as painful, as such. The pain for me came from two
things, anticipation and memory. The other thing I noticed was that it was less
painful than the test I had 12 years ago and that this time it included my
legs, which previously it hadn’t. In that test 12 years ago, the doctor had
spent a long time on my hands and arms. Testing each finger many times. This
test was over more of my body, but less detailed per part. I suppose that’s because
this is updating how things have progressed, at that point 12 years ago, I
could still walk, a little, I could also stand.
The next part was an electromyogram, this was very specific in my case, looking for a rare but unlikely neurological condition. So, I only had the needle inserted in my head, above one eye. I think if you had the test, it more likely to be in other muscles. This part did hurt at times as the doctor kept moving the needle around as part of her test, it also took a long time. I was well ready for it to be over. While the test was ongoing, I could hear a continuous sound like rain on a metal roof. Every so often she said to the nurse “Now.” Obviously, a button was pressed, the sound stopped for a second then re-started.
The machine that was used
It’s always frustrating after these kinds of tests that you
don’t get immediate results. They write to your consultant, who contacts you. When
it was over, we only had about 20 minutes before the same ambulance crew
returned to collect us. But just before they arrived, I had a collapse which
lasted part of the journey. So the only way I knew where I was in the journey
out of the hospital was a combination of Mary telling me and the smell of fish
near the exit.
In Wellington we had the High Street parade to look forward
to. A repeat trip along the High Street, maybe I should wave, no wait I can’t,
my arms are strapped to my chest. Then back up our alleyway and home. The end
of an exhausting trip out.
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Over the years I have had carers as young as 17 and some into their 60s. You would have thought the older ones would be more mature. Not always. You can never tell who the best carers will be. I used to think young people would never be suitable, then I was proved wrong. Then I thought older people would be unsuitable for me, again I was shown to be wrong. In the end it’s the particular person and their character, not their age that makes a good carer. I have had brilliant carers of all ages.
I will tell you two true, but funny stories of Carers at both ends of the age range. Some time ago, I will give you no clues of when or where. I had an older carer who was just there to sit with me while Mary was out. I can’t safely be left alone for long. It’s a safety issue. As I am at risk on my own, I can’t get into the wheelchair or out of the house alone, I would be in danger from fire or problems. That’s while my muscles are working. In a collapse I am completely helpless. While the carer was there, she made my lunch and not untypical for me I had a collapse after lunch. That’s where my muscles go into a paralysis for a short while. It’s a kind of fit or seizure. I still call it a collapse because when I used to be able to walk, I fell over. I am fully awake in a collapse even though my eyes are closed. While I was in the collapse, the carer was sitting in a chair next to me, so I was waiting for my muscle function to return and I heard a light snoring sound from beside me. My carer had fallen asleep! During her stay with me I had 3 collapses and she fell asleep 3 times! Of course, she might say she wasn’t asleep. Anyone who has been alongside someone who snores would probably recognise that argument. You may not be surprised we haven’t used her services since.
At the other end of the age scale I had a 17-year-old carer straight from school. As part of her duties she needed to prepare my lunch. I asked for a fried egg. I had assumed this was a simple task, but apparently not one she had come across before. I guess still living at home, if you don’t get a chance to cook or are encouraged to do so you never learn. That was the case for her. I have had other young carers who are very capable.
I have noticed that certain agencies have higher proportions of younger carers and other agencies higher proportions of older carers. Probably because some agencies provide anything from 15 minutes upwards of care and so carers work solidly all day, every day. A young person looking for a job wants that kind of work, regular hours, plenty of them. Other agencies do a minimum of an hour. They often seem to employ those people returning to work after children or semi-retired. Sometimes these carers want more flexible hours and so doing a couple of hours with one client, having a gap and a couple of hours elsewhere suits them. These are just my observations. We have used both types of agencies. We have also used Micro providers, who are self-employed carers, and can be any age.
A final comment about age. Some of my family came to visit recently when one of my carers was around. All of them said to me afterwards, “Isn’t she a bit young to be doing care work.” She is 39. But she does look very young. I obviously told her and she said she often gets told that. Of course, I fully understand as I am often being mistaken for a teenager, or is that a pensioner, I forget.
Age is a funny thing; we make assumptions based on it both in terms of ability and maturity. We guess peoples age by how they look and act. Yet in reality we can’t always guess a person’s age nor can we tell how capable and mature they will be.
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“We want one with a bigger bottom next time.” As I said it, I realised it could be taken the wrong way.
I wasn’t talking about carers, perish the thought. Nor as my wife suggested my own bottom being bigger. I’m sure you realise I meant aftershave bottles. We were in a shop and the said bottle was on offer. My current one seemed to fall over for a laugh. It sat and waited until the carers back was turned and them, bam, it fell on the floor. Every single day just after my carers had finished with it and the bottle was returned to its shelf on the trolley, there was a loud bang and we all knew what had happened.
“There goes the aftershave, it’s got too small a bottom.” One of us would say the obligatory words.
It’s as if the dark blue upright bottle of lotion waited silently for the right moment to catch us out. Always just as my carer is turning to do something else, yes it waits till her back is turned. It’s not a gentle thud when it falls to the floor either. Who would believe such a small plastic bottle could make so much noise hitting a carpeted flood. I suppose it does often hit the plastic protection I have around my bed, but that’s no excuse. So, as you can now understand I did not want a small bottomed bottle again, no matter how cheap it was. Even if the shop gave if away, I would give it back.
Today as I write this, we are at Cleve Spa coffee shop, no we don’t live there, well only every other day. Mary’s Dad is visiting and she is ordering him a hot chocolate. The lady serving offered it in a very nice glass mug. Mary said “can I have it in one with a bigger bottom?” She didn’t want it to tip over too easily. The glass mug offered had a very slender bottom. What is it with slender bottoms, is the world becoming obsessed with them. When I was a child mugs had big wide bottoms, as did everything and everyone else. Sturdy and wide were the standard, not slight and svelte. I suppose we are at a Spa and fitness centre so maybe slender is to be expected.
But why has crockery become so small and strange in the modern world. Slender bottom mugs, old pop bottles for water, milk bottles like I had at school for serving milk, gigantic wine glasses, you could fit a whole bottle in ones these days, and wooden platters. I know a wooden platter looks nice and it works OK with many things, a cheese dish looks great on it. But I was once served fish and chips on a wooden platter in a fancy pub. The peas just rolled on the floor, and I like peas. What next? Am I going to get a full roast dinner on a platter, where will my gravy go? It needs an edge, a barrier. I don’t want to have to start my meal by making potato walls around my plate.
Thinking again of small bottoms, as I am sure you weren’t. I fully understand the problem of small rear ends. I don’t have lots of fat on mine and the pressure of sitting long times can be a problem. This is not something that is covered sufficiently in the media. Shapely and fashionable posteriors are often covered, or uncovered. But the issues facing those of us with little fat on our rear ends just doesn’t see the light of day. I think it’s time we took a stand, not literally obviously. It’s a pain in the posterior, that is literally and I need to pad it out to make things more comfortable.
I do have a serious point to make, as odd as that may seem. Those of us who spend all our time sitting in chairs and lying in bed have to protect our skin. Pressure sores are a real danger and must be avoided. If you find yourself limited to bed or a chair for long periods of time (days or weeks) without being able to move, make sure you involve the relevant professionals in your care. In this case district nurses, who you contact via your GP. Prevention is better than cure with pressure sores. If you are concerned, chat to your GP.
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Last week I was taking bets on whether I would sink or swim at
Wellington swimming pool. Today I was not able to find out. The existing owners
are not wanting to spend money and the hoist is broken. So, I cannot transfer
to the poolside chair that lowers you into the pool. Apparently, the new owners,
who take over August 1st will prioritise sorting out accessibility.
Not wanting to miss out on trying out the facilities I decided to
try out stage one, the changing room. I am so glad I did; nothing is easy and
simple when you are disabled. Mary and I got up at 6:15am, well I was awake at
4am as usual, but Mary brought me breakfast 6:15am. By 7:30am I was ready to
head out to the Sports Centre. We arranged to meet one of my carers there, an
experienced young lady who has used poolside changing equipment before.
Arriving around 8am we headed into the changing room. Mary explored the sports
centre.
Let me describe the changing room. It’s oblong and has a bench and two lockers along one of its short ends and a toilet and shower unit at the other. You enter on the right of one long wall with the bench to your right and toilet to your left. Ahead of you is a power up/down bed on the opposite side, it’s folded up against the wall. I say bed, really, it’s a metal frame with a strong plastic sheet stretched over it and holes in it. The plastic sheet has a dip to enable drainage, in theory. There is a lifting side to it, but this only comes up into place when the bed is up flat against the wall. When you lower the bed into place you either need to have the side already up or stay down. Which means that if it was up, you couldn’t then slide onto the bed. If it’s down, it doesn’t fulfil its purpose of keeping a user safe from sliding off. The whole bed raises and lowers electrically.
This is a similar changing room to give you an idea of how it looks
My wheelchair was lined up right next to the bed, with the side down.
My wheelchair was then reclined, and the footrests raised. Making it almost bed
like. The bed was raised to an inch below my seat height. The side support on
my chair was removed and the arm swung up out of the way. The result of all
this was a near continuous route from chair to bed. I then rolled onto the bed,
simple. Not quite, because it was at that point, we discovered that the bed was
designed either for children or shorter adults. I am 5’ 10” and my feet hung
over the bottom. You may think so what? But I have delicate skin and the surrounding
edge of the bed is a metal bar. Very hard and unforgiving, especially for
delicate skin like mine. Later when I turned over there were red marks on the
backs of my legs.
Clothing removal went OK, the plastic was still dry, so the material
slipped alright. My carer discovered that the shower hose pipe was quite short
when she was washing me. But the water pressure and heat were good. She was very
glad to be wearing sandals as the floor completely flooded. Mary said the
manager was mopping up floods coming from under the door while we used the
shower. Why is it that no wet room is designed well? I have been in a few over
the years and all of them flood. Can it be that hard to allow enough angle and
sufficient drainage to prevent this?
The other place that flooded was the bed itself. The small drainage holes in the plastic were under where my body lay. I discovered that I am a great plug. When I turned over, to have my back washed we discovered a few things. First, there were no bars for me to hold onto to assist in turning, I had to use the side of the bed, not easy, because it’s too low to get hold of and has no grips. Second, the water was able to drain as I was not blocking the holes once I turned. Third, I had red marks perfectly matching the drain holes all over my back and bottom. Memories of the Amazon shower stool came back (see my blog “An odd request from Amazon.”) Fourth I slipped more easily when I had been soaped than after I was rinsed.
After I was washed, we had the problem of drying. My carer had
already pointed out at the beginning, that the number of towels I had brought
was woefully inadequate. I had asked Mary to pack three, thinking one more than
my usual was ample. It wasn’t. As one was used to protect me from further marks
after they were discovered on my back and one was used to dry the bed. Just one
small towel was left to dry me. By this point the humidity in the room made
drying hard going. But with amazing perseverance from my carer, I was dried and
dressed.
Next my wheelchair was brought back to the bedside. I neglected to
mention it had been moved while I was washed. The bed was positioned an inch
above my chair seat, and I rolled back into the chair. A reversal of the
earlier process.
It was great to have a shower, first one in a few months as I don’t have a wet room at home. I can only have a shower at other places. The last one being Revitalise in Southampton, where I also had a bath (see my blog “Shall we get in the bath?”). But I will not be repeating the experience until the new owners improve the facilities. We spoke to one of the representatives of the new owners afterwards and pointed out what needs changing and upgrading. Hopefully they will sort these things out and myself and other disabled users can benefit.
It’s disappointing when expectations of an experience fall so
short. I did enjoy being able to get thoroughly soaked with water. But the
difficulties of using the bed made the experience much harder than it needed to
be. With a ceiling hoist, a replacement bed of adult size, a longer shower
hose, and better drainage the experience would be so much better.
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Didn’t there used to be a game called consequences? Not sure I
ever played it, I’m not really into board games. Too much time playing monopoly
on Saturday mornings as a child, or rather losing monopoly. Mary was saying to
me this morning how we sometimes forget there are consequences, we can’t just
have fun and games, she was talking about my health. After three afternoons of
going out in my wheelchair; today I have been awoken by a severe headache. When
this happens, all too often, the headache literally drags me out of a deep
sleep as it did this morning. The pain and nausea awaken me. This morning was most
likely a migraine, but as I missed the aura, being asleep at the time, it’s
hard to be sure. I do know that it seems to be responding, slowly, to the
migraine medication, Zolmitripan. At least it is after the second one, which I
had to wait two hours to take, then another hour to take effect.
I was woken at 4am, it’s now 8.05am and the pain is lifting,
leaving me feeling, rung out and yuk. The plans for the whole day need to
change because of this. I just need quiet and not too much light. The tablets
are good, but not 100% effective. What they do is stop the agonising, head
splitting headache in its tracks and leave a numb rung out feeling, that
normally follows the day after a migraine. You feel like you have become very
fragile, like a china doll.
Today family are visiting, and I’d hoped to join them at Weatherspoon’s for lunch. But instead we’ve had to hastily rearrange my care so that Mary is free to go with them on her own. That takes its toll on Mary. Changed plans are never easy and in this case mean moving things around in the house so that I can have a quiet space in my bedroom which is also our lounge (See my blog “Bedroom, dining room, lounge, toilet.”), plus organising care and changing other plans for the day. All before Mary’s breakfast. I feel useless, lying here with a cool bag on my head looking pathetic. Needing all the usual things done for me on top of this extra.
We should have learnt by now about consequences. But I find that my memory for suffering is very short and my memory for joy very long. So that when things go wrong and I end up in difficulty, feeling nauseous and in agony, I forget it soon after. That’s why I wrote this on the day it happened. I need to be feeling it to remember it. I’m not sure if it’s a protective thing, or just a very good strategy, but either way it works well. I am not a miserable person. I don’t focus on the bad days. Even during a bad day, I don’t have to be free of pain for many minutes before I move on. My tendency is always to be optimistic and positive. Anyone who knows me well will agree with that. That’s the real reason I never learn about consequences. I have a very short memory. I will also use distraction and adrenaline to override pain and difficulty. If anyone visits, I refuse to look sad and gloomy. This is a very common thing to do for those who are chronically sick. They will mask their real feeling behind a smile and laugh. It’s amazing how effective that is at making people say, “You look so well.”
We tend to judge the degree of illness someone is suffering on how miserable they look or on how white they are. Misery is easy to hide, and I would suggest desirable to do so. Who wants to visit a misery? Don’t misunderstand me here, there are times when the pain becomes so bad you can’t ‘put on a brave face,’ at those times I avoid seeing people. But I find those times come in waves for me. Pain, in my case is more often wearingly long term (chronic). But I realise there will be those who are suffering from severe, constant pain, don’t assume I am talking about them. I can only talk about myself and people in my situation. Whiteness commonly comes with iron deficiency anaemia and bouts of nausea. In fact, people can often look very ill when they have a minor cold and very well when they are dying. I have seen two friends on the day of their death, both looked better than ever. I never guessed it was the last day I would see them. If you have ever seen someone the day after a major heart attack, they can look bright and well. Yet they have not only nearly died, but still have major heart damage. Add into the picture all the major illnesses that show few external signs till the very end and its all very confusing. I always find it odd that a lot of cancers are invisible until treatment starts. The treatment makes people very ill, until it hopefully cures them. My point being that something as life threatening as cancer can sometimes be unseen until treatment starts. We cannot make a diagnosis of how well someone is by how they look. Certainly, a smiling red face tells us nothing. Again, I understand there are those who are severely ill and look it. I am talking of the many who are severely ill and don’t look it. (See my blog “You look so well.”)
I made the best of today, managed to see our visitors a couple of
times during the day. Mary brought them in after each of their trips out. It
was lovely to be included, but I needed the long breaks in between to recover.
I am writing this last section the next day. Migraine is gone and I am feeling that strange post migraine euphoria, that only migraine sufferers will understand fully. It’s like a weight has been lifted and you are left feeling a little lighter than usual as if gravity has reduced. I tend to get more ringing in my ears (tinnitus) but that may not be common. When I was still able to walk, I used to feel like going for a walk or even a run on a morning after a migraine. The freedom and joy of it having gone makes you want to rejoice. Now I run in my head, although I am always curious how my smart watch seems to find I have done some steps every day, in my bed! I don’t want to disappoint those of you with smart watches who assume every step on your watch you really took. Perhaps my watch counts the steps I take in my imagination? Don’t worry, I know that its based on arm movement so the few steps it counts are my arm moving.
There are consequences to everything we do. That applies whether you are ill or not, it’s just more obvious physically when you are ill. Activity takes a toll easily when your body is weaker. I so enjoy getting out of the house and this won’t stop me. I just need to pace it and allow recovery days. Today is a quiet day before I try out the swimming pool tomorrow (see my blog “Sink or swim.”) Let’s see if I can remember the lesson learnt.
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“Pass me the proton gun”. That’s what I felt like saying after I heard that one of my tablets is called a Proton Pump Inhibitor. Surely it’s a laser gun, not a tablet, or at least an inter dimensional portal opening device.
It feels like medical science has shot on so fast in the last few years that the technology on my old favourite TV shows look like cave man tech in comparison. I used to think Star Trek had such amazing equipment. But in the early shows they just lay on a medical bed and a gigantic display read out heart rate and other vitals. You can now buy a ring on Amazon that will give you heart rate, oxygen and sleep patterns, a ring! Just about any smart watch does the same, well without the oxygen read out, unless you get an add on.
Sleep monitoring ring
A couple of years ago I bought an endoscope, to look behind a radiator. An actual endoscope. That’s a fibre optic cable that enables you to view into tiny holes and gaps. They use them in medicine to view down your throat and up the other end. My endoscope plugged into my laptop and enabled me to view a video feed on the laptop, now you can get Bluetooth ones that connect to your phone wirelessly and you view the feed on your phone. Of course they say, not for medical use. But they are effectively the same devices, available for a few quid. Don’t tell me no one is tempted to use them medically, hopefully none of my friends.
Then there’s the space age materials, around today. Pressure relieving gels made of silicone, breathable fabrics, super absorbent pads, and all the new polymers, plastics to you and I. Then what about the leap forward in electronic controls. I was looking at, well to be honest I was coveting, an amazing hospital bed on eBay. It was able to profile into a seat from a bed. The controls on it would not look out of place on a space ship. Multiple controls, read outs, even a colour LCD display. These days the simple controls on beds, chairs, wheelchairs and hoists are touch control. They use a circuit board level switches under the plastic cover. The more advanced even use the conducive type found on smart phone screens. These are technologies that didn’t exist when I was younger.
You can monitor most medical read outs via your smart phone and let’s face it a smart phone is one of the most incredible advances out. If you had told me when I was a teenager, much less a child, that I would be able to own a hand held computer that could: communicate with anyone on the planet with video and sound. Run so many applications the mind boggles. Track my location to a few metres. Speak to me and understand me. Translate most languages, well sort of. Be pointed at an object or place and tell me what it is. Take high definition photos and videos. Be a word processor, a desk top publisher, a portable power point device, an excel spread sheet, a complex calculation device, a drawing tablet, a video editor, a photo editor. I haven’t even scratched the surface. If you had said I could own one of these I would have laughed. Or I would have assumed it would be massive or cost thousands. But the vast majority of us now have and rely on smart phones.
My smart phone connects to my Hive heating, can check my cctv cameras, switch on my smart plugs and lights. It also links to my Amazon Alexa system. How much longer before we routinely get smart monitoring and medicine dispensing for dementia patients. I believe it already exists. Or how about a push button food preparation for people like me. Where a meal is taken from the fridge or freezer, heated and delivered to my bed robotically. Personally, although I could see that and even robotic care as possible in the future, I would never choose to replace human beings with machines. You would lose so much. Human contact is not replaceable by machines and it is vital to our wellbeing.
I like technology, it’s fun and helpful. But it has its place and its limits.
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(This is
based on my experience, written as a personal guide, not an instruction manual.)
I’ve realised that for many people, including me, becoming ill is enough to cope with, without the hassles of ‘The System’ to navigate. So, I thought I would write a blog on cutting through all the red tape, aimed at helping anyone who has just become long term ill or disabled, or if you have family in that situation. I’m only writing from my personal experience. I do not claim to be an expert in this area. You need to check details of your particular circumstances with the DWP, NHS and/or local adult social care. I also highly recommend the CAB (Citizens Advice Bureau). This blog is designed to raise questions, not answer everything.
The first thing I discovered is that there are two separate
systems when you are long term ill and about to be released from hospital. The NHS
(hospital) and the community. Therefore, if you are in hospital and have a life
limiting condition, the hospital have their own OT’s (Occupational Therapists)
and Physio’s that are separate to the community ones. This might seem obvious, but
it’s important. The significance being that the hospital team assess you and
see if you are fit to return home and if so what equipment and care you need to
return to your house. They put in place all the initial things you will need.
Things like a bed, commode, carers, etc. But the care they setup is only temporary,
a few weeks at most, whereas the equipment can be permanent. There is a problem
though. They don’t sort out high spec wheelchairs (I believe they may loan push
ones) and unless you already have a wheelchair or can get one, they don’t sort
out ramps, temporary or otherwise. The reason that’s a problem is because ramps
are not just needed for wheelchairs, but also for stretchers. I was returned
home by stretcher, so the lack of a ramp was an issue. You’ll also need a ramp
for any follow-on hospital visits if you, like me, need stretcher transport to
hospital.
When I was last in hospital and due for discharge, the longest
delay in getting home were access issues. The hospital transport service sent
out an assessor to check access at my home. As an aside I should explain this
was in January 2018 at the end of the period of time I was able to walk (look
at my other blogs for details). So, we were in a house with normal access. In
our case we have a step. How many houses don’t? The assessor said we needed a ramp;
he also reckoned our inside access was too tight. It is tight, but I have had
stretcher transport several times since too and from. He was prepared to have
the crew try the internal access but would not authorise my return without a
ramp. The hospital would not supply a ramp as I had no wheelchair at that time.
A circular argument. We had returned my previous wheelchairs as I had been able
to walk for nearly three years. After my wife had many fruitless phone calls to
the hospital OT, a friend of ours assembled a temporary ramp, enabling my
return home.
This is where I am really grateful to a wonderful friend for that
ramp, and a fantastic ambulance crew, three of them (an extra one joined them
at our house). They persevered even though the temporary ramp was not ideal for
my weight on a stretcher. This enabled me to get home. Our friend did a lot
more than the ramp. He helped Mary prepare the front room for my community
profiling bed.
A word about the temporary care package from the hospital. They
put your care requirements on a system that gets bid on by a few care
companies. The lowest bid wins! The trouble is companies that bid don’t
necessarily have enough capacity. They just want any extra business; it seems
they bid first and see if they have capacity second. The company that won me in
auction, it feels that way, did not have capacity for the hours I was supposed
to get. Which meant that I was given less care each day than I needed, even
though they had bid on it and accepted the contract for those hours. The other
problem is that the care company who accepts the contract has that contract
with the NHS. So, they don’t feel they need to meet your wishes, the NHS is
their customer. Every problem I had first had to be authorised by the NHS.
Next step Adult Social Care, that’s community, they take over your
care and therefore the payment and authorisation of the care package. This
still means you are not directly the client of the care company. But it’s a
step towards things changing. You start to get choice. Adult Social Care do an
assessment of your needs. They decide how many hours care per week you need. If
you have a partner caring for you, they look at respite weeks for them and extra
hours care that will help them if they have needs. Looking after someone who is
long term ill and needs 24/7 care takes its toll on your health and respite
breaks help to prevent burn out. If your partner/carer becomes ill, then the
state will end up looking after you full time. They want to prevent that.
Once care is granted by Adult Social Care, you have two choices.
First you can let Adult Social Care get you those hours exactly, but from a
supplier of their choice. You will not be the client directly. So, it will be
like the hospital package with all the control out of your hands. Or you can
take direct payments which are less money per hour than any care company
charges, yes you heard right, than any care company charges. The council get
special rates on everything, so a couple of companies have negotiated prices
with them that are at the rate they pay if you let Adult Social Care organise
your care. But those care companies treat those contracts as second class. That
is my opinion, I cannot claim it as fact, it’s how it feels. They send whoever
they want at whatever time suits them. So, if you have a problem with smokers,
or loud people or if you don’t want male carers or have any special
requirement, tough. If you want to get up at a set time each morning, you’ll be
lucky. The cheap rate for the council comes at a cost. Yet some of the staff I
have spoken to at Adult Social Care seem unaware of this. They are convinced
there are agencies that charge the adult social care rates to individuals, I can’t
find them. Either they are as rare as hens’ teeth or like Scotch mist.
I just want to say a word of praise for our main Social Worker,
she is brilliant and does understand these limitations. She just has no power
to change it. She did a fantastic job organising my care and setting everything
up. In fact, most social workers we have dealt with are great, they just lack
the power to change the system. The current system means you no longer get a
permanent social worker. One sets everything up for you, then you just call the
‘hub’ and speak to the duty social worker for any changes. I am always pleased
when the social worker who I know is on duty. For some unknown reason three
departments organise Direct Payments. Adult Social Care authorise it, a
department at the council pay it and a non-governmental charity, in my case
Enham, administer it. Three different lots of staff are being paid to sort out
one lot of money. Is that efficient? Cost effective and or does it waste the
money that would otherwise go to care? You decide, I have my own opinion.
Direct payments buy you less hours than you are assessed for, but
you have choice and can get consistency of carers. They buy less hours because
of the difference between the amount per hour paid by adult social care and the
amount per hour charged by care companies. Normally at least £2-3 per hour
different. I think counsellors and politicians who setup the system should be
forced to have the council run system of carers provide them care for a few
months. Or try to buy care at the amount provided under direct payments. It’s a
nonsense to say you need a certain number of hours then give you insufficient
funds to buy those hours from any care agency. Even micro providers charge more
than the amount given and they are self employed individuals. The system would
soon change if politicians had to use it themselves. One other thing, you
receive a different rate of Direct Payments if you use an agency than if you
use a micro provider. A little higher for an agency as they are CQC registered
and have lots of extra paperwork.
The basis of how much, if any you pay is assessed by the council
based on your income and savings. I understand we live in hard pressed times
and I realise that I am fortunate to live in a country that provides free care
to people like myself without other means. But my point is that either the
correct amount per hour should be supplied or at least it should be
acknowledged that it is impossible to meet the hours assessed with the amount
given. To pretend that the hours assessed and payment given match or can ever
match is a folly.
The other very odd part of the system is for respite care. That
whole system is very upside down. The way it works makes no sense to me. But
it’s too complex to explain here.
A lot of things run in parallel when you come out of hospital. An
OT and Physio from the community should be assessing you. A district nurse will
no doubt call on you and if you need it, your GP. Depending on your level of
limitation you can get almost everything done at home. There is a dental access
centre in Taunton you can register with, they do home visits. The same rules
apply as with visiting a dentist in terms of payment. If you had free treatment
before, you still do. The GP can visit you. Even opticians can test your eyes
at home. Again, the free treatment rules apply. But, dental and optician visits
at home are second best to going into a practice. They travel with very limited
equipment and can’t do everything. So, if you can travel, then do.
With hospital appointments if you have no transport of your own, need
to travel by stretcher or wheelchair on public transport would be impossible
(buses with a large power wheelchair are a nonstarter). There is hospital
transport. They question you closely about why you can’t travel by another
method. Hospital transport is also a very inconvenient method of transport. You
must be ready 2 hours before your appointment time and can wait an hour or more
after.
It’s the OT who assesses you for aids. The hospital OT will have
supplied initial equipment, but things like hoists, slings, chairs and other
more specialised equipment will come from the community OT or they will advise
where to buy them. On the subject of hoists, if you are unable to stand or
weight bear, the standard type supplied will be a push portable one. Ceiling
hoists are only supplied if they are deemed necessary in your circumstances, as
they are in ours.
Just recently we have been made aware that there is a specialist
OT who deals with housing, both modification and allocation. No one told us
about that when I was sent home from hospital into my front room without access
to a bathroom and with difficult access to our house. That’s why I am writing
this blog for others. Information is vital, we should have been told advise was
available about housing. If in doubt, ask.
Wheelchairs are a whole area in themselves. You need a GP referral for a wheelchair. That referral goes to Millbrook Healthcare. They send out an assessor, eventually. It took 8 months for me and apparently, I was marked very urgent. It seems to me that the new privatised system for wheelchairs is slower than the old system through Exeter Wheelchair Services. In Hartlepool, the NHS wheelchair service assessed me and built me a custom wheelchair within 3 months. The way it works with wheelchairs is that you are assessed for the minimum type that meets your need. In most cases that is a push wheelchair. If you need a power wheelchair because of your needs, then you will only be allocated one if you can use it inside and outside your house. Years ago, when I was first allocated a large high-backed reclining wheelchair, it was still a push wheelchair. See my blog ‘Keep on rolling’. You only get a ramp supplied in your house once you have a wheelchair. Some Church friends bought me a second-hand power wheelchair while we awaited the NHS chair, this meant a temporary suitcase ramp was then supplied. But we were fortunate, friends from Church paid for and other Church friends built an even better concrete ramp outside our house. It accesses our front door and back garden.
Me using the concrete ramp outside our house last year, in wheelchair our friends bought while we waited for NHS one.
I hope my experiences have cast a little light on a complex area. You
can see there are many anachronisms and it’s frustrating to navigate. Without
Mary sorting all this out over the last few years I don’t know where I would
be. She has had many a stressful phone call with different departments. I
realise this blog may make it sound like I sorted things out. In reality most
things were sorted by my wife Mary. I have only really got involved more
recently as things have been easier.
May your journey through the red tape be a simpler one than ours.
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(This blog designed to advise and help, it is humorous, but also factual. It may cause you to blush)
Wheelchairs are brilliant machines for transport. Power wheelchairs in particular have transformed my life. But a wheelchair is after all still a chair. Think about a chair, you sit on it, it has a solid seat, and no hole in it. So, imagine that you are a man and you need a wee. I guess it may be worse for a woman. You may not want to imagine it, you might prefer to think of something else, I am trying to help for those who would find this useful. These are everyday realities of being disabled. Let’s forget for a moment if you need to do anything more than a wee, that’s a whole other area.
You are sitting down, and you need to wee. Well you might think, there are urine bottles you can use. True, there are. Think then about Wheelchairs, they are narrow, the width of your bottom typically, so your legs are together. Still with me? Maybe you need to act this out in your head. Where does the urine bottle go? If you can put it in the right place how do you ensure, no leaks at a 90-degree angle without injury to yourself. Perhaps you are beginning to see the issue. It is possible but not easy, after all it can be done. Then imagine you are on a train in the disabled space. The train companies give much more space these days for wheelchairs. But typically wheelchair spaces face the rest of the seats. That is also true on many buses. Perhaps we are expected to entertain the crowds while we are there. Getting back to relieving oneself, I don’t really fancy entertaining the other passengers by using a urine bottle in front of them, or under a blanket with everyone wondering what I am doing. It would be a little off putting. Talk about performance anxiety. Fortunately, there is an alternative and I found out about it after I had struggled with urine bottles in wheelchairs for years.
You might think how can Mike share such intimate details publicly. But, if I do maybe I can help others. I didn’t know about these things. I have had to struggle finding out. If my embarrassment can speed up the help for others, then so be it.
The alternative is a Conveen. I believe there are various makes, but I only know about the one I have used. Coloplast Conveens. They are external catheters. Normally catheters go inside the urinary tube in either a man or woman. Conveens, which I think are only available for men, fit on the outside. They look like a condom, but they have an open end with a fitting for a tube to go to a urine bag. They are adhesive, I will come back to that as it causes some fun fitting them. The bags come in two types, ones that attach to your leg and ones that attach to your bed or directly to your wheelchair.
Remember I said Conveens are adhesive, so they must stick all around to prevent leaks. Obviously, you need the right size. Yes, they send you a device to measure the diameter of your manhood. After you have recovered from the disappointment of the fact you are average, boasted in the fact you are large or wept over the fact you are small. You can order them. When I phoned the surgery to give them my size, I had a very funny conversation.
Prescription line lady, “what size do you need?”
Me, “30mm”
Prescription line lady, “is that length.”
Amazed silence from me, then “no, that’s diameter.”
I feel like I should wait a few minutes at this point while all the guys reading this, finish measuring. By the way the diameter range available is 21 to 40mm. Who knew such things eh? Or who wanted to.
There is a special measuring device (See picture below):
Fitting a Conveen, is, let’s say tricky. Think adhesive, hair, preparation adhesive, yes they give you a preparation wipe of extra adhesive. So, everything is sticky. You really need the two pairs of hands you have with a carer to fit it successfully. If you get it right and don’t catch all your hairs in it. Then connect the tube right, it works great. Much better than any urine bottle.
I would say if you are someone who needs to use a Conveen, read the instructions carefully and follow the advice of the rep to the letter. I ignored one bit of advice and realised afterwards why it was important.
Below is a picture of a Conveen sheath, the part that fits over your manhood. It’s rolled up in its package so you can only see the top that connects to the tube, that then goes to the urine bag (see photo below the Conveen) the ribbed part is a strain relief or air gap. This is where I went wrong. It’s important to flatten all this part with your thumb and fingers when fitting so none of your manhood goes into any of it. If it does, then that strain relief part, with the ribbing just acts as a pinching device, not nice. The only bit that goes over your manhood can’t be seen in the photo, it’s all rolled up and sticky. It unrolls as applied. Glue on glue, very sticky. Hence no leaks. So long as you apply it right and have the size right, no boasting. (Also note, there are two lengths available, so check you get the appropriate length, no comment).
Next step you connect the tube from the urine bag and attach it by straps to your leg. Make sure when attaching it to allow for expansion, after all it will get filled up. The urine bags come in different sizes and will need emptying, so leave the drain tap accessible and check it’s closed. It’s easy to accidentally knock it open if your carer pushes it back under your trouser leg after draining. By which you will realise they have a drain tap at the bottom and your carer or partner has the enjoyable job of draining it, see photo below.
Conveen sheath in its package. Note the ribbed section, avoid inserting your manhood into this bit by squashing the top of sheath when putting it on.
Leg bag, pipe at top connects to the sheath, see below for close up of the drainage tap
Note, make sure tap is closed after draining.
At the end of the day you may be thinking, but how do you remove a sticky rubber thing from such a delicate area. Your eyes may be watering in anticipation. Don’t panic, they thought of that. There is a non stinging release spray that is amazingly effective at removing the glue. It’s a pain free process.
This is the glue remover spray.
Have I freaked everyone out sufficiently and caused everyone to need a lie down or at the very least some counselling? Seriously, I hope I have helped to explain and clarify some things and point you in a helpful direction.
Let me just emphasise these Conveens have been life changing for me. I can only recommend the Coloplast ones as they are the only ones I have tried. They sent me samples to try first. They work brilliantly, the only failure I had was when I applied it wrongly the first time. Every other time since I have had no issues. So follow the instructions carefully.
I read this blog our at a writers group in Wellington and one big issue that became apparent was, what about women? There are internal personal catheters for women, but that is not as easy or convenient.
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There is a button on the right if you want to follow me.
Shall We Get Dressed Now? 