My letter to NHS staff

There has been a lot in the news recently about pressures on the ambulance service, A&E and the NHS generally. In response to these headlines, personal stories have emerged of clinicians under pressure, with low morale and seemingly impossible demands on their already-stretched time.

I have a message for these clinicians, from paramedics to porters, doctors to nurses, cleaners to receptionists, physios to SLTs – what I want to say as a patient applies to all harried NHS workers. It comes out of my recent experience of two admissions to A&E in quick succession this week, which allowed me to see first-hand the pressures that staff are facing. I had outstanding treatment from some and less-than-good treatment from others, and to be honest I am shocked that it wasn’t all in the latter category, given what I observed in A&E; the stories of people waiting in the corridors on trollies and slumped on chairs have not been exaggerated. Here is my personal message for anyone who works in the NHS.

Dear NHS workers,

I think I am finally beginning to understand. I had read the news headlines (http://www.economist.com/news/britain/21638206-britains-national-health-services-accident-and-emergency-departments-are-under-renewed-pressure) and I had read the personal stories (http://www.theguardian.com/society/guardianwitness-blog/2015/jan/08/surviving-night-nhs-hospital-a-and-e-doctors-story). To be honest, none of it particularly surprised me. Having been in and out of hospital for years and witnessed the chronic pressure placed on the NHS, I am more surprised this hasn’t hit the headlines sooner. I am pretty sure that you, working at the sharp end of things, have seen this storm brewing for a while.

This week I have had two episodes of unexplained aphasia with neurological symptoms (muscle rigidity in my right arm). Both triggered the stroke pathway when my friends phoned the ambulance service. What surprised me was the time it took to get me to hospital on both occasions (around two hours from when symptoms first hit). That doesn’t give the clinicians very long to give clot-busting drugs within the four hour window in the event of a stroke. But then it doesn’t surprise me, given that one of the ambulance men said he had been called out to a 70 year old gentleman who complained of heavy, crushing chest pain and breathlessness on the phone. When the paramedics got there (within 7 minutes), it turned out he was fine; he just wanted someone to help him move his TV. If paramedics are being called out to act as removal men, is it any wonder that you guys are overstretched?

I want to say to you: I understand that you are short staffed, overworked, underpaid, tired and stressed out and permanently a little hypoglycaemic. That my condition (whatever it is) is not an open and shut case, and that therefore it’s harder to be sympathetic because it takes time to think about the right diagnostic tests and treatment. That it would be easy to label me as faker number 11 when you’ve already had to deal with 10 such people today. But I am not faking. I am frightened. When the episode strikes, I can’t speak. It’s not that I don’t want to. More than anything else, I want to communicate and tell you what’s wrong. I know what I want to say, but the words won’t come out. To those who have dismissed it as anxiety and told me so to my face, I want to say: I get why you are saying this. It’s totally understandable that you would want to make less work for yourself when you are already hanging by your fingernails. But it doesn’t help: it adds fear and anxiety to an already terrifying situation.

To those who have not dismissed me, I want to say: you are heroes. To the doctor who came to take a case history when I could only say nouns, and who allowed me the time to speak: wow. You probably had 30 other patients clamouring for your attention, yet you gave me space and time without jumping in and finishing my (very disjointed) sentences. And then when my speech returned, you sat down with me for a good ten minutes and chatted with me about the Vikings. I couldn’t work out what you were doing at first: were the reports of overstretched staff greatly over-exaggerated, that you had ten whole minutes to sit down and talk with me about something seemingly irrelevant? No, I realised half-way through: you were doing a language sample, to check if my language had indeed returned. You were making doubly sure I was recovered before you moved on.

To the nurse who took me down to CT and kept me chatting whilst waiting for the scan; you were awesome company. I know I was a little hyper after regaining my speech, and to be honest I can’t really remember everything I said. I hope I didn’t embarrass you or say anything inappropriate, but to be honest you were so kind that you would have taken it all in your stride.  

To the paramedic called out on the weekend who initially thought I was just overly anxious, then realised that there was probably more to it than that and repeatedly apologised that the ambulance hadn’t come sooner (and eventually took me to hospital in his fast response car): thank you for changing your mind about me. I enjoyed your amusing stories about call-outs you’d been on; they kept me calm and distracted from my fears. 

To the nurse who confided in me about her long battle to get a diagnosis for her endometriosis, and how she felt vindicated once she had finally been told she wasn’t a morphine-seeker: thank you for confiding in me. It made me feel that I wasn’t alone. Thank you for being blunt with me and telling me “you are not crazy”. Thank you for telling me that you think it could be migraines, and that this kind of migraine is becoming more common. I felt so reassured that I wasn’t the only one experiencing this. 

To the doctor who cleared up the blood I had spilt on the floor after not putting pressure on my venepuncture site for long enough, and for doing it with a wry smile – you didn’t have to do that. But thank you for mucking in and helping, and not just leaving someone else to do it. 

To the A&E junior doctor who spent a good half an hour doing a thorough neurological exam: you did an excellent job. I know you had to fight for that side room in which to do it, and that you had to turn porter for a bit and find a bed to put me on, and wheel it down the corridor (I could tell you weren’t very practiced at wheeling trolleys): that was beyond the call of duty. Thank you for being humble and explaining that there are some things we don’t understand about the brain and that we may not get the answer as to why this is happening, but that this doesn’t mean what I am experiencing is not real. Thank you for having the humility to admit you don’t know what’s going on, and going off to chat to someone who knows more than you. Believe me, I think more of you as a doctor for doing this, not less. Thank you for telling me what to do next time this happens, and for ordering me to come in every time I have an episode, even if I don’t want to bother the overburdened staff.

And to all the other staff who I didn’t interact with but who made my stay in hospital marginally less stressful: the porters, cleaners, receptionists, emergency department practitioners, CT scanner operators (are you radiographers or radiologists? I can never remember): you are awesome. I know you are tired, I know you are fed up with cumbersome targets. I don’t mind if you don’t get me out of A&E within four hours (although you did: well done!). I don’t mind if you bump me for someone who’s had a cardiac arrest, or a child with suspected meningitis, or an elderly gentleman who has definitely had a stroke / heart attack / fall; I can wait, their need is definitely greater than mine. Just keep talking to me, keep listening to me, keep remembering that this is a scary time for me, and that I wouldn’t be here unless I needed your help. And once again: thank you.