Communication works for those who work at it.
I decided to dedicate a separate post solely to our experience at the gastroenterology department in Great Ormond Street hospital, as I didn’t want the valuable information to be overshadowed by my detailed account of the appointment with the congenital myasthenia team. During our visit, the consultant and I were thrilled about a potential breakthrough that could address the longstanding issue of doctors’ poor communication skills. By the way, if you’re looking for urgent care on East Gunhill Rd, I can provide you with some recommendations.
Dominic has complex gastrointestinal problems. He had silent reflux from birth, and because some of it went into his lungs he suffered from a lot of serious pneumonias and wouldn’t eat (just imagine feeling like you’re drowning every time you tried to eat or drink something). He was tube fed into his stomach had an operation to stop the reflux called a Nissen’s fundoplication just before his first birthday. He had a second one done some months later when his stomach function never fully recovered after the first operation and excessive vomiting caused the Nissen’s to come undone. After the second one we bypassed his stomach altogether and fed him via a tube that went past his stomach and into his jejunum, which is the top part of the small bowel. This worked well enough that a permanent feeding tube was placed surgically into his small bowel in August 2010 (it was also the catalyst for our 8 month hospital stay and the reason I originally started this blog). If you want to see pictures of all his various attachments, be sure to check this picture montage out. Given all the above, you would expect the gastrointestinal team to know Dominic very well. I, however, have learnt to manage my expectations.
My expectations for our first appointment that morning had already granted me the freedom not to rush with the children to get the train, despite the fact that I was running late. I already had the secretary’s phone number ready for the outpatient’s receptionist so she could find out why the consultant had not shown up as expected. The secretary helpfully informed her that, not only was the gastro consultant not there, but she had actually completely forgotten that she was meant to be seeing us in the first place. By the time we sat in a room opposite each other, and found out that the computer, no matter how many times the little buttons were pressed, was not working, it was almost time to go to our next appointment. I used my time efficiently in order to try to achieve what I needed to: things like trying to persuade her to start send clinic letters out so the GP will actually carry on prescribing Dominic’s drugs and updating her on how I had tweaked and changed things with Dominic’s feed. She used her time to congratulate me on doing her job such a good job. I then moved on to the fact that the community nurses had been leaving urgent messages about Dominic for weeks and no one had responded. Dominic has a Hickman line, which gives us access to his blood easily. Nurses come every week to take blood to test and also a urine sample. These results are then meant to be analysed by the gastro team at Great Ormond Street in order to pick up any concerns early on. At the last appointment I found out no one had been checking them for the previous four months, and this time, if anyone had checked them, they weren’t responding to the string of calls that had been made from Dominic’s local team to the gastro team about them.
My expectations of the behaviour of this particular consultant are largely based on experience, having, amongst other things, spent 5 months in hospital with Dominic, very poorly, on the surgical ward (that the gastroenterologists came to every day) waiting for one of the gastro team to review Dominic by actually taking the ten steps needed to enter his hospital room. The exasperated surgical consultant had left a message every day, but eventually got them to come and see him by physically blocking the exit of the surgical ward so the gastro consultant couldn’t leave after her rounds. She still didn’t see Dominic that day, but seemed to get the message and finally came the following day. That’s 5 months of being in the same hospital as this team and failing to get anyone actually to come and speak to us. You can imagine the challenge you face once you have been discharged. Communication is not their strong point.
Because of this, I was pleasantly surprised by the reaction I received when I mentioned that I had got Dominic added to a new communications system called Patients Know Best. The consultant was delighted, not so much by my initiative, but by the fact that she could now communicate with Dominic’s other teams more easily. Yes I did just say that, a doctor delighted by the idea of communicating with a different team. I almost wish I had the forethought to take out my phone and record the event to prove that such things can and do happen as I know plenty of friends will find it difficult to comprehend. I have to admit the name choice of the system did make the deeply cynically and NHS-scarred side of me feel instantly nauseous at such an obvious attempt at patient platitudes; however, the concept is one that delights me. It is advocating the idea that the patient should be in control of their medical records and attempt to encourage different departments (often within the same hospital) to actually communicate with each other. And even more encouraging is that then there is a written record of the communication that goes on. Think of it as social networking with your/your child’s team. Let me use a common situation to help explain the system. Imagine a GP asks for bloods, but you know that you had already bloods done a few weeks ago at the hospital. As things currently stand, the GP would send you for another set of bloods as the hospital ones would not be available to them until a clinic letter arrived some weeks later with the results in them (if, in fact, it ever arrived). That’s twice the amount of tests, twice the cost of running the labs, twice the cost to the NHS, twice the inconvenience to the patient, twice the wait for answers. With this system the patient could choose to invite their hospital consultant and their GP to share their medical notes. The blood test results could then be uploaded on to the Patient Knows Best system and then all the invited professionals could view it.
For us, the Patient Knows Best system means that potentially (as I’m being realistic here) in the future we won’t have so many separate, non communicated, sets of notes for each hospital or specialist team that is involved with Dominic, . As it stands Dominic has 5, overflowing, volumes of notes in Great Ormond Street, and probably an equal amount at his local hospital and even more spread out in the community, with only one person that knows the whole picture (little old me). These notes are desperately relevant to each other but never shared and completely separate. I hold out hope that if Dominic were to turn up at his local hospital, this could potentially allow the findings of the local team to be shared with the specialists and vice versa. I say potentially as you’re making a great assumption that all the doctors involved would be willing and would have the ability to communicate in this way.
Although this system is already being used within the gastro department, and they are obviously keen to have their patients on it, the poor communication means that the process of actually being able to sign up for it is, currently, not working very well. Having been told countless times that Dominic would be added and then nothing having happened, I had taken it on myself to track down the person running it and asked directly for Dominic to be signed up. In the end this seemed to be the right approach, and I can now view the gastro team listed as possible contacts within the Patients Know Best system.
As far as I am aware Great Ormond Street hospital’s gastroenterology department are the only people trialling the system at the moment, and however slow it is to be taken up by others, the fact that they are trialling it is to be applauded. What is even better is it gives glimmers of hope that a department that is notorious for its poor communication, especially considering the complexity and fragility of a lot of its patients, has admitted its failings and is attempting to do something about it. This is why I was both surprised and heartened by the fact that the department seemed enthusiastic about it. Watch this space about this one, I’ll let you know if we have any luck with it.
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The irony of this is this post starts with a computer problem! I’m assuming this system will also be on a computer???!!! 😉
(Hope it works for you, really! Does sound positive)
@Susan Cuin true, it is reliant on the computers actually working!
Fantastic! I hope more places adopt a system like this! We have to start treating the whole body, not the particular “system” that is “broken” at the time. xox
@JenLogan yes, and treatment starts by being able to get hold of a doctor!
Such a frustrating experience for you and your family. Whilst I appreciate that writing your blog gives you a public voice for your concerns, from personal experience I really urge you to contact the patient liaison service (sometimes known as PALS) at GOSH, if you haven’t already done so.
Wishing you all the very best for Dominic’s continued treatment and more power for your campaign for better communication in the NHS.
@Lesley Beeton Thanks Lesley. I actually helped set up PALS in the area that I live when the concept first came about, so I know all about them. I also recognise their limitations. I’m a ‘pick your battles’ kind of person. I really appreciate the support, thank you x
What a brilliant idea. Fingers crossed it works. I’d hate to think what would happen if our brains shut down and we couldn’t remember ALL of the information for all the different people involved in our children’s care. Unfortunately, because I have so much medical crap to remember (no where near as much as you mind) I have absolutely no space in my brain to remember anything else.
@MyLittleH It’s such a good idea that I’ll be really upset if it doesn’t become widespread. And kudos to the gastro department for recognising and tackling a problem head on.
Thanks for writing about this Renata. I’m sorry to hear about all the problems you faced, but am glad that using Patients Know Best provided some help. For anyone else who is already under the care of the gastroenterology team and wants to register for an account, please visit:
You will need to visit the clinic to complete the process (they need to check your id) but you can do most of the work before you attend.
Finally, it brought a smile to my face reading what you said about the name. If it’s any consolation, my mum had wanted to call the site “Parents Know Best”, because of what she had had to go through when she was the one having to look after me with my rare condition. The idea behind the name was that a person with a long-term condition ends up being the one who knows the most about how the best care of the condition, as they are the only person who talks to all the different doctors and nurses involved.
Mohammad – Founder, Patients Know Best
Hope it comes to fruition, what a fab scheme. Did they ever check his recent results??!
Just listened to Peter Day’s ‘In business’ radio programme and picked up on the ‘patients know best’ scheme. This led me to your blog – and my sympathy for the extreme frustration you’ve experienced and sincere hope that Dominic is now progressing well. I’d be very interested to hear if the website is working for you – I’m involved in rolling out a way of working called ‘Early Support’ (www.ncb.org.uk/earlysupport) which involves getting professionals to share information. So your experiences are very relevant! Many thanks. Gill
Thank you for taking the time to comment… I had a look at the site, what an interesting idea, I hope you have success in making it work. Succeeding in getting professionals to talk to each other when they have adjoining offices can be a challenge, let alone across a community! My biggest difficulty has been getting doctors to sign up for it, they are naturally very suspicious, and having a) not heard of it and b) the request coming from me not a ‘collegue’ (don’t get me started on that) means that they are generally ignored… that’s if I can even get an email address from them in the first place to send the request to. I am more than happy to talk to you about it. If you contact me through the contact form, I’ll email you back, however I feel duty bound to contact PKB first to tell them the system’s short comings from our point of view.
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