Part 2: Small acts of kindness that really do matter
Frustration with the system…
The clinical care I received was excellent– however the organisation around it was not. The onus is always on the patient– even when letters were incorrect they all included the threatening ‘if you don’t turn up you will be removed from the system’ so I would have to call to clarify; this usually involved automated options, time on hold, and eventually being told that the person I needed was unavailable and could I call back tomorrow? AARRGGHH!!! I understand the ‘system’ having worked in the NHS for 20 years and I can be assertive, and yet I struggled… This made me wonder how ‘average’ patients manage to navigate the system? It also highlighted to me how much extra work (and grumpy patients) the system creates for itself– eg online appointment booking would enable the patient to do much of the work and arrange times that suit them!
On the day of my surgery I had to wait 11 hours, yes 11 hours, on an uncomfortable waiting room chair and of course, not allowed to eat or drink. One nurse had been particularly kind but even she could no longer look me in the eye after about 6 hours. I watched as staff members left their shifts without any acknowledgement that I was still waiting. Although it was not my fault that I was still in the waiting room at ‘closing-time’ I somehow felt that I was a nuisance. Did I get stroppy and upset – of course I did, wouldn’t you?! We need to see things from the patient’s perspective- patients are less likely to become ‘difficult’ if they are informed of what is happening and if they feel that staff have some empathy for their situation.
But there were also moments of kindness. The morning after surgery was my birthday and every member of staff who came to see me wished me happy birthday– it meant a lot to know that someone had taken the time at handover to mention this and that I was more than just the ‘patient in bed 5’. The nurses brought me a birthday cake– a small gesture but something which really cheered me up as well as giving the other patients and staff a treat with morning coffee!
Am I invisible?
After the first few weeks I began to start to venture out and about. Initially to the corner shop, gradually building up to get a bus to the high street for a coffee and then into work a couple of times a week. Navigating public transport with a disability does give you a real insight into human behaviour! There seemed to be four types of people:
1) Those who appeared not to see me- it is amazing how people apparently do not notice someone struggling to balance on half-boots with crutches, particularly when sitting on the priority seats!! I would often have to swallow my pride and ask (even beg!) for a seat.
2) Those who viewed me with contempt– rushing past or tutting because I was taking slightly longer at the till (having to have both hands free for my crutches meant that I had to put my purse in my bag before walking away). Sometimes I would catch a small disparaging look; sometimes with Mark I could see people giving a glance as if to say ‘poor guy, he’s with a disabled girl’.
3) Those who gave misinformed help- speaking down to me as if I suddenly was not capable of anything. For example, the well-meaning shop assistant who tries to help me count my change– my brain was still working even though my feet aren’t!
4) But finally there were those who are kind- and this is where the little things really did matter. An offer of an arm going down some steps, holding a door open, a car stopping to let me cross the road- the offer of a seat without having to ask.
The Little Things…
I am lucky– my disability was temporary. This is not the case for everyone.
So the next time you are out think about the little things you do. Just because someone is not old does not mean that they are not in need of some help or some kindness.
The little things that people have done, or not done, really have mattered to me. Sometimes it is a gesture, sometimes just a small look– but it has often been what has made it a good or bad day for me.
Be that person who does a little thing to make someone feel that they have had a good day.
LittleThingsTLC 
I too am a health care professional(ot) and I suffered a devastating stroke whilst 26 weeks pregnant and Isubsequently went to a stroke ward where, at 38 years old, I was the youngest and most pregnant. I was in for 3 months until my daughter was born healthy but the callous treatment I witnessed and experienced was shocking. From being almost constantly told off. I was 38 years old. Examples include when I pointed out that the nurse was giving me double dose of medication. She failed to cut the tablet in half. Initially I was told off for daring to interrupt the drug round. When she acknowledged I was right she looked me straight in the eye and said,” at least you’re good for something.” I was severely neglected when needing the loo. Which, as a heavily pregnant woman I needed to pee every 8 seconds. One day, after being made to wait 4 hours. I was in pain from needing to wee so badly that I was in tears but the only solution that I was offered was for me to fetch a pad, put it in and wet myself. I couldn’t reach the pads on the high shelf and the dense left sided hemi rendered this humiliating suggestion impossible. I had some well planned suicidal thoughts I’m ashamed to say. I’ve since been diagnosed with ptsd.
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Thank-you so much for your comment – and many apologies for not replying until now. We are still getting to grips with the website and it had not alerted me
that there was a comment. Sorry!
Really sorry to hear about your experience. Would you be willing to write a blog for us? If you would like to discuss my email address is laura.stuart@uclpartners.com Happy to chat by email or ovr the phone?
Laura
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