Why words matter – Spoonie or Energy Impaired
Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.
The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.
We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals.
The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.
Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology.
Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.
We’re not “just tired” as people seem to think, it’s more fundamental than that. It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.
For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go.
That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.
How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live.
We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.
Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.
If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.
That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them.
We talk about people having a visual or hearing impairment so why not talk about being energy impaired?
I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.
If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.
Should Nurses go on Strike?
An ethical dilemma.
But 24 hours earlier the RCN made a worrying announcement. They have been balloting nurses about the current pay crisis. 91% of nurses said they’d take industrial action short of a strike. 78% of members who completed the poll said they were prepared to go on strike. This is the first time in 101 years of the RCN that nurses have decided to strike.
I have been a qualified nurse for 40 years. Never in my career have I known nurses wanting to strike. We’ve previously protested about pay. As a student nurse in the 1970s, I and many of my off-duty colleagues marched through the streets of Exeter. I will never forget the reaction of some of the by-standers. Whilst the majority were supportive, some spat at us and accused us of killing patients by being on the march. Nurses were only allowed to march if off duty or given formal permission by a Matron. No patient care was affected by our actions. It took some time for my student nurse pay of £11 a week to improve!
RCN members have now voted at Congress to begin a summer of planned protests. And so they should. There is currently a 1% cap on public sector pay rises. Unless there is a change of government, this will continue until at least 2019-20. The effect being that the average nurse has suffered a real-terms pay cut of 14% since 2010. This is not acceptable. Nurses are now being forced to use food banks.
Our professional registration and indemnity insurance fees have risen. We have to pay these before we can work. Pay and conditions are worsening. Most nurses are now working long 12 hour shifts. When I started to train these had just been phased out, apart from Night Duty. We were told that such long shifts meant nurses were too tired and could make mistakes. Why is the same advice not valid now?
What can nurses do to highlight their plight? There are few actions they can take without jeopardising care. Working to rule, what would that involve? Not staying on after a shift has ended if there is an emergency? I guess some nurses if they have pressing family issues, such as collecting children from nursery, may feel they can’t stay on. But most nurses I know would willingly stay on to help. Not helping a patient in some extra way? I doubt it.
What would I do if I were still working in the NHS? I really don’t know. I would certainly ‘cover’ so more junior nurses can protest in some way. I suspect when it comes down to taking strike action, most nurses will be very reluctant. I went into nursing because I cared about people and wanted to learn how to help people get better. That still holds true for nurses today. The word vocation may be rarely heard, but nurses still care, deeply.
This current government knows this. It’s why they have treated nurses and other healthcare workers so disgracefully when it comes to pay and conditions. Theresa May did not even bother to acknowledge her invitation to the RCN Congress. Whilst the two other party leaders did attend, Theresa was nowhere to be seen. There are 675,000 nurses in the UK how many votes did she loose?
I have seen at first hand over the last 6 years how hard nurses work. During that time I’ve had 4 different operations as well as other treatment. Most of my nursing care was good. I saw nurses having to care for confused and elderly post-operative patients in a High Dependency Unit. The unit was understaffed, the nurses not adequately trained. There were not enough doctors on duty either.
Visiting a friend in a psychiatric hospital last year, the picture was the same. The ward was chaotic and noisy, with not enough staff. There were no extra staff to provide activities either. The reason? More bed closures including the specialist high care unit.
Yes, nurses can protest outside hospitals or Downing Street. But I cannot imagine any nurse leaving the ward to actually withdraw their labour. In itself that would be a breach of the NMC Code of Conduct. Nurses could refuse to do overtime. But the effect of that will be to reduce their pay even further.
All I know, is that when nurses are protesting – I will join them. Both as a patient and a nurse.
Share this:
Like this:
Category:
Comment, Medical, Politics
Tagged with: