Last night I noticed a tweet from @StuartBerry1. It had been retweeted by @amcunningham – if you are in any way interested in health or medicine, and you’re not already following Anne Marie on twitter then stop now and go follow her (if you’re not already on twitter then you’re really missing out).
Anyhow, Stuart was collating ideas for hints and tips of how to get the most out of a 10 minute GP consult. It’s years since I’ve seen a GP but I have attended numerous doctor or hospital appointments with my parents since my Dad was diagnosed with cholangiocarcinoma (bile duct cancer) five years ago. This blog is full of my version/experience of my Dad’s illness, it’s not his experience or views, just mine so it’s already once removed, and it is obviously heavily influenced by who I am, my world view and my experience. That said, I contributed a few ideas to the GP conversation and there has been a healthy amount of discussion about one of my ideas since.
I shared that on two occasions I’ve used my phone to record conversations with Dad’s medics. I thought twice about whether to share that information, and felt it was a little risky to do so, because I knew some people wouldn’t necessarily agree with my course of action, or approve of it. If I’m honest I’m not exactly confident of my own actions because on one occasion I didn’t seek permission to record it.
The first occasion was in A&E (a couple years ago now) and I asked the doctor if they minded me recording what they were saying so I could have it as a record and to share with family members. They had no problem whatsoever, seemed almost indifferent. I just recorded what they told us, listened to it a couple times after and I no longer have it as I’ve changed my phone since then.
More recently I recorded one of my Dad’s oncology consults. On this occasion I didn’t ask permission, the appointment was already 90 minutes late, I didn’t think of it, and it was only once the consultant started explaining something complex and I could see my Mum struggling to take notes, that I thought I’d just record it on my phone again. I can’t tell you how many times my Mum, Dad and I have all sat through the same conversation, with the same person, at the same time and yet come away with different understandings or memories of what was said.
Certainly my experience of Dad’s current situation is that it is extremely complex, and extremely complicated. It doesn’t really fit with my mental stereotyped image of clinical science. In fact i’d go as far as to say it doesn’t feel like science, and thats no bad thing, its much more human than that. My Dad has (with a few minor exceptions) received outstanding care over the past five years, he has defied all odds, and its not much short of a miracle that he is still here. None of that would have been possible without the phenomenal skill, compassion and knowledge of the many medical professionals he has come into contact with. At this stage though, as Dad is receiving palliative treatment (blood transfusions to counteract bleeding tumour, chemo, scores of drugs) it seems that it is more art than science. Everyone who comes into contact with Dad seems to have a different interpretation of what the best course of action is, or they don’t know – sometimes that honesty is refreshing, sometimes it’s just plain scary.
What I have learnt over the past five years is that there is probably no such thing as a textbook case, certainly if there is my Dad isn’t it. Consequently so much of Dad’s care is very personalised and tailored, things change quickly, we’re aware he is in a very precarious situation. I consider the best thing I can do is support him and Mum, and my siblings who live away, so we are all as aware as possible (or as aware as we want to be) about what the current status quo is, for as long as that lasts. To that end I don’t regret recording his consultation, even though I feel a residual guilt that I didn’t ask for explicit permission (it upsets the ethical researcher that runs through my core), it felt like the best course of action at that time.
I’ve listened to the recording twice since, with my Mum. No-one else has heard it, it’s something that is quite precious to me. On the one hand it serves as a factual record for when we start doubting ourselves and on another it is a recording of my Dad discussing critically important decisions with the man who has in my opinion (along with his surgeon/previous consultant) done the most to sustain his life. I can’t imagine anyone outside my own family ever hearing that recording, unless I figure out how to save it elsewhere I could lose it at any time, but I like the idea at the moment that one day my 2yr old niece may be interested in knowing more about her Grandad and she could hear for herself how brave he was, how he faced what I would have considered impossible conversations a few years ago, head on. It’s evidence of his spirit, and my fantastically brave and spirited Mum’s attempts to do the absolute best for him.
I appreciate the ethics are dubious, but I’m glad I did record it. I also think there could be a really useful application of this simple technology in everyday consultations. Lots of patients have smart phones that enable recording nowadays, I’d like to think that there is a GP out there who would embrace the idea – how about actively encouraging recording, even if it wasn’t a verbatim record that people wanted, I think most doctors surgeries could help people to get more out of their allocated slot if they encouraged people to think of the questions they wanted to ask before seeing the doctor.
Some of the obvious concerns are around litigation, but really, really in our enlightened world of empowered patients is this an acceptable argument? OK, so I’m playing devils advocate but really look at how much information is collected from the patient by the doctor in an average consultation. No patient I know of has ever been asked if they mind if the doctor takes notes. How about taking a leap of faith and embracing the opportunity of supporting patients and their families. Who wouldn’t want to?
This weekend has seen me tweet twice about football, an almost unheard of situation previously. Today, Gary Speed, the Wales Football Manager died suddenly at his home from a suspected suicide, an absolutely tragic loss to his family, friends and of course to the football community.
Yesterday I heard about a tweet that Stan Collymore had sent, describing his experience of depression, so I tracked it down. You can read it here. It is a deeply honest reflection, written with graphic detail and an eloquence that grabbed me. He talks about the benefits he has found from running:
The running I find really has helped massively, as i’m sure you guys that suffer who exercise find, the tangible release of calm, and “being on top of things” powers your internal dynamo, and keeps the black dog from the door.
Before moving on to explain the feeling when depression takes over, describing his latest experience as:
Around 10 days ago however, I started to feel anxiety, which grew into irrational fear, which in turn turned into insomnia for 3 days (little sleep, and an incredibly active, negative mind), that in turn over last weekend (Swansea v Man United) into Hypersomnia, whereby my energy levels dipped to zero,and my sleep went from 8 to 18 hours overnight … So fit and healthy one day, mind, body and soul withering and dying the next. This to me is the most frightening of experiences, and one fellow suffers i’m sure will agree is the “thud” that sets the Depression rolling.
Stan describes further the impact of depression on him (seriously if you’re still reading just go read the whole thing – it is powerful) and talks about how to support someone:
I’m typing and my brain is full, cloudy and detached but I know I need to elaborate on what i’m going through because there are so many going through this that need to know it’s an illness, just an illness. Not bad, mad, crazy or weak, just ill, and that with this particular illness, for its sufferers, for family and friends who are there but feel they can’t help, you can!
Patience, time, kindness and support. That’s all we need. No “pull your socks up”, no “get out of bed you lazy git”, just acknowledge the feedback the sufferer gives, get them to go to the GP asap, and help them do the little things bit by bit.
That may seem simple but in my experience, and currently as we speak, having a bath, walking for 5 minutes in the fresh air, making a meal, all things that days before were the norm, seem alien, so friends and family can help, just by being non judgemental, and helping in the background to get the sufferer literally back on their feet.
It’s hard to know what to do when you’re confronted with someone who is depressed, it’s hard to know what to say or what to do, but as is so often the case in any of these situations, the reality seems to be that mostly what people require (or at least what Stan is advocating) is time, support, patience and kindness. No judgement, maybe an ear to listen, and a helping hand.
It’s also hard to live with someone who is depressed. To keep trying to get it right, to worry about getting things wrong, to start to feel responsible, to not be able to help, to feel part of the problem as well as potentially part of the solution. Of course the reality is that when someone is depressed they are ill, a myriad of situations and circumstances conspire to make someone ill, it is never the cause of one person, or one circumstance. That said I know how hard it is to remember that, when you’re faced with depression or living with someone in the throws of depression, it is hard to hold onto things you take for granted at other times. I consider myself lucky to have felt depressed, but never to have suffered from depression.
I am very aware of some of the trigger points for my own mental health, and try very hard to keep my life in balance, to force myself to regularly exercise, to have a good diet, and to not get too absorbed into any one area of my life (although work seems to be the constant thing I need to challenge on this regard). That said if I thought I was depressed, or those who were closest to me thought I was at any point, I’d want to be encouraged to seek help and see my GP. I think we still have a long way to go in breaking down stigma around mental health and well-being in the UK, and I know that seeking help can feel like a huge hurdle to jump.
When I read Stan’s post I thought about how I felt when I heard that my Dad’s cancer had returned – and how hard it is for people to know what to say in that situation, I wrote about it here. The reality is, I think we probably worry ourselves so much about saying the right thing, or not wanting to make it worse, that we can skirt around the issue. Acknowledgement, a listening ear, support and patience – that’s what helps, you don’t need to have the right words, or a solution up your sleeve, you have to care.
If you are concerned about someone then try to encourage them to see their GP, and also let them know they can always talk in confidence to the Samaritans on 08457 90 90 90 or email Jo@Samaritans.org. Stan finishes his tweet with:
I hope that if you are suffering, or know someone that does, that a little insight into someone elses experiences might resonate with one or two and give them the comfort of knowing that there are millions out there like us that deal with this reality in our lives.
Remember the statistic, 1 in 4 of us will experience mental ill health – that’s 25% of all of us, depression is an illness and one that can be treated with the right support. If you’re reading this and worried about yourself, or someone you know, remember you are not alone, seek help and things will improve.
Sources of support:
(cc) on flickr by Tommarsh – Black Dog of Depression, St Patrick’s Day Parade 2011, Dublin