“Would you like a cup of tea?” Chronic Illness and Event First Aid Provision

Suede being amazing at Kelvingrove Bandstand, July 2019

I was recently at a Suede concert at the wonderful Kelvingrove Bandstand. I had a brilliant time during the first half – creeping chills during As One, utter joy at Outsiders, and ecstasy during Tides (if you haven’t listened to The Blue Hour and Night Thoughts, you must!) Halfway through I had a chronic illness flare-up and I had to go to the First Aid area, where I was treated badly (I honestly would have been better off leaving the concert grounds and lying down in the street). I wasn’t sure if I was going to blog about it, but the response to my complaint was dismissive and insulting, and it’s very concerning that this is the attitude of first aid providers who are supposed to offer care and compassion. So, here’s my full letter and their response:

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I’m getting in touch with a complaint about the First Aid provision at the Suede concert on Wednesday 31 July.

I have the chronic illnesses M.E. and fibromyalgia. I’ve been ill for many years and have learned to more or less manage my illnesses through pacing and resting before and after events. Sensory overload is a main symptom of M.E. and fibromyalgia, but I can usually cope with things like concerts if I have rested enough beforehand and allow time to rest afterwards.

However, halfway through the Suede concert I started to feel terrible, my M.E. and fibro symptoms flaring up (severe flu-like exhaustion, sensory overload, aching muscles, orthostatic intolerance, feeling lightheaded), and I was really struggling. I tried to sit it out, but towards the end of the concert I was starting to shake, and it was difficult to sit there in that busy and noisy environment, as this was exacerbating my symptoms. I badly needed somewhere quiet to lie down.

I was directed to the First Aid area by a member of staff. I naively told my friend to stay and enjoy the rest of the concert as I thought the people at First Aid would look after me.

I’m uncertain of timings, but judging by the song that was playing when I went to the First Aid area, I think it was 10.15pm, and I believe I was there until around 10.45pm – 11pm.

When I arrived they didn’t seem prepared to deal with anyone at all – there was a few minutes delay before the paramedic (I didn’t get his name) in the ambulance opened it up, and in the meantime there was nowhere for me to sit. When the paramedic finally opened up the ambulance he asked me what was wrong and I said, “I need to lie down.” He asked what the problem was and I said, “I have chronic illnesses – M.E. and fibromyalgia. I’m having a flare-up and need to lie down.”

He got me into the ambulance and sat me down on a seat while he sat on the stretcher (which was littered with various things, including empty food packets, so the first aid area was not in a state to quickly deal with anyone who needed it). I told him again that I really needed to lie down and he said:

“I’ve dealt with people with M.E. and fibromyalgia before and they haven’t had to lie down. They’ve been fine sitting with a cup of tea. Do you want a cup of tea?”

I was gobsmacked by how dismissive and condescending that was. He was telling me what my experience of my decades-long chronic illnesses should be.

I responded: “No. I don’t want a cup of tea. Please let me lie down. I just need to lie down.”

He said they were dealing with another situation and he might need the stretcher so he couldn’t let me lie down (no one else ever showed up). I asked if he could at least let me lie down for now and I would most definitely get up if someone was in more need than me. This went on for a while, exacerbating my symptoms as I had to put what little energy I had into fighting for what I needed. He finally relented after I repeatedly promised to get up if someone else needed it.

Getting to lie down was a massive relief, though having to push for it was stressful, especially when I was already feeling so bad. When I was lying down I asked him if he was a medic or just a member of the festival organisation team (I was incredulous that a trained medical professional was treating me this way when his job was to provide care). He confirmed he was a paramedic.

I then asked him why he’d been so reticent to let me lie down. He repeated what he said about someone else who might need the stretcher. I repeated that I would of course give up the stretcher if there was someone who was more in need. He then went on to say, “The problem with people who have chronic pain is that if they lie down it can be difficult to get them back up again.”

Again, this man was explaining my own illness to me. Also, his reticence to let me lie down seemed to be related to the potential hassle (a conclusion he’d jumped to himself) it would cause him to get me back up.

I said, “It’s not the chronic pain that’s the current problem. It’s the exhaustion. And I told you I’d get up if you need me to.”

I told him I was supposed to be at the after party (I’d planned to go for a few minutes to say hello before catching the last train) and he said, “You’re a VIP? So are you going to the after party?”

I was incredulous. I was lying on the stretcher, shaking, exhausted, on the verge of tears and yet he thought I’d still be going to the after party. This confirmed to me that he didn’t believe I was ill. Whether he was questioning the immediate flare-up I was having or if he is prejudiced and doesn’t believe ME and fibromyalgia are real illnesses (a misconception that some in the medical profession still entertain), or both, I don’t know.

I’m trying hard to understand his behaviour. It could be that he didn’t think I looked unwell – people like myself who have invisible (the clue is in the word) illnesses can often be dismissed because we don’t look unwell. Often how we look on the outside bears little relation to how we feel. If you passed me in the street you wouldn’t know I’m in constant pain and exhausted. But as a trained professional, he should know that you can’t judge someone’s health just on how they look.

I was baffled at his disbelief – I should have been at an after party meeting people I admire and having a nice time. Instead, I was in a messy ambulance being treated badly by someone who should have been providing care.

I replied: “No. I’m clearly not going to the after party.”

Fortunately, my friends arrived not too long after and while I was happy to see them, I started crying, as the stress of trying to cope with the effects of the illnesses along with having to push for care had finally gotten to me. It was a relief to see them and they distracted me from the difficult situation. I decided to get a taxi with my friends and the paramedic gave me two options:

• To avoid the stress of stairs, I could walk with my friends and an escort up the hill (taking either the longer but less steep route, or the shorter but steeper route, depending on what was better for me)

OR

• I could stay lying in the ambulance and they could drive me up to the main road to get the taxi, but this could take up to 45 minutes until he got the all-clear

Because I was so angry and distressed at being treated badly by him I immediately chose to walk up to the road with my friends, just because I wanted to get away from him and not because I was feeling well enough. I should not have been put in this position.

Obviously I’m angry at the way he treated me, but in the end this isn’t about me anymore – I’m concerned that he might treat other people like this, and I’m especially concerned that he might distress someone more vulnerable. I don’t know if his attitude is in direct relation to his ideas about M.E. and fibromyalgia (which are still, even today, stigmatised illnesses), or if he would be rude to anyone who had come to him for care. Either way, it’s disgusting, unprofessional behaviour.

I understand staff probably have to deal with many people who are drunk or who have taken drugs, and that this may be challenging, but I’m assuming staff are trained to deal with this. I was sober and lucid (surprisingly lucid, as an M.E. & fibro flare-up causes cognitive difficulties and I can often have trouble speaking. Although, I did feel overwhelmed, and think I would have had trouble articulating my symptoms if he’d asked me). I wasn’t belligerent, aggressive, hysterical, or even crying (until my friends arrived). However, I don’t think it should matter if I was any of those things – if someone goes to the First Aid area seeking help, they should be treated with respect and given the help they need. People should also be treated as individuals – being told he’d treated people with ME and fibromyalgia before and all they needed was a cup of tea was incredibly condescending and dismissive. Beyond that, even if people have the same illness, their experience of it can be different, and it can often depend on the situation. I shouldn’t have to explain this to a trained professional.

Lastly, the state of the ambulance was unprofessional – there shouldn’t be random items and empty food packets lying on the stretcher. I also don’t think this was adequate provision – given that the venue was sold out and had up to 2,500 capacity, one cramped ambulance isn’t enough. The fact that I wasn’t given adequate care just because someone else ‘might’ need it more than me is not good enough.

Three things I would like to see come of this:

• Training for this particular paramedic (and preferably all staff) on M.E. and fibromyalgia. There is a lot of erroneous information on these illnesses, so I’d suggest contacting the M.E. Association and Fibromyalgia Action UK. If training is not possible, at the very least I suggest staff read the resources on the M.E. Association and Fibromyalgia Action UK websites.
• Training in dealing with an ill, distressed person, regardless of the illness/injury etc.
• Adequate First Aid provision for the venue. Staff that are ready to deal with an emergency situation.

On a more positive note, I would appreciate if you could pass on a big thank you to the staff who were looking after the VIP area. They were very friendly and helpful.

Thank you for your time. I look forward to hearing from you.

Yours,

Ms Ever Dundas

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This is the insulting, dismissive (and clearly standard form) letter I received in response: 

Dear Ms Dundas,

I write in response to your communication to Regular Music regarding the concerns you have (No, you’re not writing regarding the concerns I have – this is clearly a form response) in relation to the way you feel you were treated (It isn’t the way I ‘feel’ I was treated, it’s the way I was treated) by the first aid staff during the Suede concert within the Kelvingrove bandstand. Having read your letter, reviewed the ambulance cctv log and spoken to the staff involved we have dealt with your concerns appropriately (Have you? How do I know?) and the matter is now concluded (Is it? Do I not get a say in this?)

As we are sure you will appreciate, a high standard of care and compassion is at the centre of our patient and customer focus (No, I don’t appreciate that. I didn’t receive a high standard of care and compassion at all, hence the complaint). We are sorry that you feel our standards fell below that of your expectations on this occasion (I don’t ‘feel’ your standards fell below expectations, they did fall below expectations) and we wish you the very best for the future (My future would be better if I wasn’t concerned about myself and others being treated badly by people who are supposed to provide care).

Yours Sincerely

Clinical Director

Redcrest Emergency Medical Services (Scotland)