A personal experience with the NHS

I should start out by saying that I’m not going to be very objective in this blog, as the subject matter is far too personal for me to put at arm’s length – it may also be the first time that some of you are aware of what I’m about to tell you, and for that I apologise too. I’m writing this as a user, albeit one who makes a living as a designer, so it may come across as heart before head.

A few weeks ago, I received a phone call from my father. He’d told me before then that he hadn’t been feeling well, and that he’d been into hospital for some tests. I admit that I hadn’t really given it much thought beyond being concerned that he wasn’t feeling great. The phone call turned into him telling me that he’d been diagnosed with pancreatic cancer, and I sat in my flat feeling like someone had dropped a rock on my chest for the rest of the night, 500 miles away from him.

Since then, I’ve been watching him undergo treatment within the NHS. My first feelings of optimism regarding the speed in which they wanted to treat him have long since faded into sheer frustration with a system that seems to ensnare those it intends to treat. I’ve seen his hopes raised, only to be dashed days later, and with them, endured the emotional drain that this inevitably results in, on both my father and those around him. I look back at Facebook messages to friends telling them that he’d be out before I got back from London for Christmas, yet here we are in January, and I’m still visiting him in hospital.

I’ve sat at his bedside these past few weeks looking at what’s going on around him, finding it impossible not to pick at the loose threads of the service I see in front of me, and the glaring, crippling problem that rears its head so often – communication. I have no questions or doubts over the clinical capabilities of those treating my father, and every doctor, nurse or other employee I’ve met has been polite, courteous and a credit to their profession. The problem is that it seems – and I emphasise that word, because in this case, the impression is as important as the reality – that everyone is doing their own thing, and that nobody speaks to each other in a meaningful manner. Whether it’s the staff that relentlessly offer my dad his dinner, despite him being fed through a naso-gastric tube, or the fact that he frequently seems to be a key channel of communication between clinical staff, it adds a whole other level of frustration to an already emotionally fraught situation.

In films and TV, you see relatives pacing around in hospitals, waiting for information to appear in the form of that cathartic moment where a doctor walks through the door, and tells them exactly what’s going on, and what’s going to happen, regardless of whether it’s good or bad news. In reality, at least in my experience, this moment hasn’t ever come. I find myself craving ‘news’ or ‘the plan’ like I used to a cigarette on a trans-Atlantic flight, asking him every time I go in what’s going on; what he’s been told since I last saw him. I watch him grow frustrated at the perceived lack of action, and that he’s just being left to sit in a hospital bed, on a drip, feeling bored, annoyed, and isolated. And all that’s on top of the fact that he’s got cancer.

Ultimately, I’m left feeling that the NHS is insitutionally treating my dad like a patient, the host to the cancer more than a person with real emotional needs – like they have no idea how emotionally crushing it is to be told first that you’d be getting out of hospital for Christmas, only to have that snatched from you a couple of days later. Right now, I don’t know what’s going to happen to him, regarding his treatment, his prognosis, whatever. I don’t know who to ask, and I don’t know how I could ask them if I did, because I don’t know where they are or when I can see them. Whether the clinical staff have a plan of action that they’re sticking to with unrelenting focus and determination, I have no idea, and the lack of knowing is the problem at the heart of everything I’ve talked about.

As I said, it’s difficult to discuss this in a measured manner. As a designer, you see a problem, you want to solve it. In this case, my dad’s at the heart of it, and it drives me mad to see this extra burden that’s placed on everyone involved in this shitty, exhausting situation as a result of something as flimsy as poor communication. Sitting writing this, I know that it could be much, much better. I feel like I need to do something about it.

    • Owen Cook
    • January 4th, 2012

    James, start making a fuss, start making a noise. Make the hospital bring you the specialist (or the person in charge of your father’s care) as soon as possible. When you find that person, never leave a conversation (face-to-face or telephone) without some answers (likely not all) and another ‘touch-point’ when you will speak again.

    From personal experience, being nice and patient with the NHS might be the difference between a ‘good’ outcome and a ‘bad’ one. That said, the staff and their efforts are often outstanding…but you need to break the cycle of random updates at random times and get a dialogue going that you have some weight in.

    All the luck in the world to you and your family.

  1. A difficult post to write, I’m sure. I hope things go well for your Dad’s treatment.

    I can relate to what you’ve said: my girlfriend was treated for cancer last year – and is still in recovery.

    One of the things that is hardest to bear is a lack of information, waiting for news, or not knowing when a particular action is to be taken.

    Luckily my girlfriends mother is a GP – so could act as a hub for collecting information, and pushing for various options. I’m sure that these things would have happened in some form anyway – but having someone who was versed in the workings of the system and treatments was incredibly beneficial.

    I have often thought about those who don’t have access to someone who can ‘champion’ their case – and what an extra burden it must be at an already difficult time.

    Perhaps there should be a person within the system who has time dedicated to collating and distributing information for individual patients, rather than relying on clinical / care staff who are already overworked?

    • Jane Edgeler
    • January 4th, 2012

    James – very well written and I fully understand your extreme frustration and anger, not to mention how your Dad will be feeling – you both have needs and rights and should be exercising them by asking for an appointment with the Consultant – and don’t be fobbed off. Write down all your questions beforehand as its easy to omit something in this situation. Sorry to hear you are having this additional strain. Keep us posted. Xx

  2. James,

    I completely agree with Owen – I think that, rightly or wrongly, it is the patient and patients close friends and family’s job to get the best out of the clinical staff at the hospital. They have the know-how and the raw tools to make a difference, but sometimes need inspiration to use them well. Make the staff feel a connection to your father – I believe that doctors will subconsciously work harder for a patient if they are perceived as more than just a ‘host’, which with a some help they will surely realise.

    My best wishes to your dad and the rest of the Porteous’.

    • Graeme Brown
    • January 6th, 2012

    Hi James, I’m so sorry to hear about your Dad, he’s a wonderful man and it was a pleasure for me to be part of the wedding in 2010.

    My own father was similarly ill in Glasgow a few years ago, and our experience was broadly similar to yours – great clinical skills but an almost incomprehensible lack of communication between the various professionals involved. Dad was in the Beatson in Glasgow, despite this being a purpose built cancer unit there seemed to be no communication between the departments. I have many examples of this, but the one that sticks in my mind was when he was taken into the ward on a Sunday afternoon, starved overnight and prepared for a scan (MRI I think) on the Monday morning. The porter wheeled him through the hospital for the scan only to find that the unit was shut as it was a Bank Holiday!

    He was on two separate courses of chemo in parallel, and there were several occasions they tried to give him the wrong type – it was only my mother who spotted the error and questioned it. I’ve no idea what the outcome would have been otherwise, but mistakes like that are quite worrying.

    I found the consultants very approachable, and usually responsive when contacted via their secretaries, however there was at the time a massive shortage of consultants and the one man who was treating Dad was also looking after three or four other hospitals in central Scotland. They tried very hard to do their best, but they were ridiculously understaffed.

    Despite all this he received the care he needed and pulled through, and I sincerely hope that your Dad does too. Please give me best to him, Louise and the rest of the family, I think about you all often.

  3. Hi James,

    I don’t know you, or your father, but @niccombe was telling me about this blog post today so I found it to have a read. I am really sorry for the position that you, your Dad, and your family are in. In my experience the lack of information is far worse than having to deal with the information you eventually get – even if it is bad news! My own father is terminally ill with cancer now, but in a strange way that is easier for me to deal with than the not knowing that preceded that diagnosis!

    I relate to so much you talk about here, especially the not knowing who to ask, or even once you do know having to hang around in the hope you’ll catch them. The lack of reliable information, the poor information sharing between staff and patients, between staff and staff, between different hospital departments. It’s a really hard system to navigate, and I can only imagine a hard system to work in. I have written quite a lot about my experience of trying to support my Dad on my blog, one post you might be interested is where I tried to channel my reflections on the system into something more productive, in terms of how the system could be designed better/improved http://georgeblogs.wordpress.com/2011/09/07/nhs-maps-and-apps-my-ideas/

    I’m resisting the urge to try and offer you advice, mostly because it sounds like you’re doing a great job as is. I think the hard thing for patients, and staff, is that as much as we think medicine is about science, so much of a journey with cancer seems to be more subtle than that. Hope is given, decisions change, plans are altered and nearly always overworked, committed, skilled and dedicated staff can not spend as much time communicating and explaining why…and sometimes there is no why, the plan of action changes all the time, especially shortly following a diagnosis (but your father/you should know if that is what is happening). Personally I’ve found blogging very cathartic, I’ve got a lot of advice and support via twitter and Macmillan has lots of support available too http://www.macmillan.org.uk. If you’d like some ideas for who to ask/what then drop me a tweet (@georgejulian) and we can talk by twitter/email/phone.

    Good luck and stay strong, George

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