Catherine Calderwood: Building a personalised approach to care through enhanced clinical leadership and shared decision making

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Dr Catherine Calderwood, Chief Medical Officer for Scotland, and Consultant Obstetrician and Gynaecologist at The Royal Infirmary of Edinburgh, discusses moving towards a model of shared decision making, building a personalised approach to care, and reducing unnecessary variation in clinical practice.

This presentation was recorded at our conference, Shaping the future of maternity care, on 3 November 2016.

Transcript

So thank you very much for the invitation and I’m very proud of the fact that as Chief Medical Officer I still continue to have an antenatal clinic in the Royal Infirmary of Edinburgh and I think I’m probably the only Chief Medical Officer who has one of these in her briefcase. So I believe I’m the only Chief Medical Officer who still sees patients.

So in my role as Chief Medical Officer, we have to do a report every year, and that annual report is done by all four Chief Medical Officers in the four UK countries. The traditional report has the data which summarises the health of the nation and in Scotland, that’s pretty obvious, too much smoking, alcohol also too much, sugar yep a bit too much, and not enough moving around.

So I thought I would put the usual data in the back of a report but I decided to do something different. What I did was, I wrote a letter to the doctors of Scotland, because as one of the leaders of the medical profession, I was hearing from them as I toured the country that they were no longer comfortable with how they were practicing medicine, in like the way that they were feeling that they didn’t have the clinical voice that they were being advocates for their patients but not able to really push things through for them.

And so I asked six questions of my colleagues in Scotland and interestingly it has floundered very well, because I asked them if we could practice medicine differently, by changing our style to shared decision making and by building a personalised approach to care which is why I’ve been asked to come and speak to you here. Whether we could reduce harm and waste, and reduce unwarranted or unnecessary variation in practice and in outcomes.  If we could manage risks better, and if could all become improvers and innovators.

And I wrote to the doctors because I’m a doctor, but in fact what has happened is, I have had huge amounts of comments from nurses, from midwives, from paramedics, from physiotherapists, and from members of the public who have said, we love this concept, we love the fact that you’re talking to us in a personal way but also what I talk about is over intervention and over medicalisation, and really doing for the practice of medicine something that is actually what’s a priority for those people that we’re talking to.

So I done a, many of you will be on Twitter. I’ve now had 6.1 million views on Twitter across the world and realistic medicine.  If you Google it, it’s the first thing my report that pops up, and almost no descent, almost no disagreement with what I’m talking about.  So I’m going to outline a few parts of to you and this morning I don’t have much time, and there’s a much longer talk, but what we’re really finding is that this is struck a chord with people providing healthcare across this country and across the rest of the world.

So I’ll tell you a story which maybe illustrates this idea of a personalised approach to care and, people have actually asked me, “where did you get some of these ideas?” and what I really feel is that I’m so proud to be part of this service because I think maternity services are so ahead with this. We’re so ahead with how we talk to women, we talk to them about giving them choice, we talk to them about their families and we really talk to them as people and lots of the rest of healthcare doesn’t do that for patients.

So I’ll tell you about a man, he has an interesting hobby, he’s a pigeon fancier, and this man is Lanark, quite a deprived part of Scotland. He has pigeon fancier’s lung as many people have which is a deteriorating lung disease, he gets more and more breathless, and he’s admitted to hospital, he deteriorates a bit, he gets antibiotics and steroids and he gets sent home, and every time he visits the hospital, of course what we do is tell him that if only he would give up his pigeons he would get better, because his pigeons are causing his lung disease, his lung disease is getting worse.  So a friend of mine, Graham Ellis, runs the hospital at home service in Lanarkshire, so this is about keeping people out of hospital, and he got a phone call about this man and Graham thought, sounds pretty ill but maybe he would be able to have hospital at home, I’ll go and visit him.  And he went to the house, and he saw that the man was very, very ill, he thought I will have to admit him.  He started then the story about the pigeons, where you do realise that pigeons are your problem.

As he started the story he could see the man’s daughter beckoning to him from the corner of the room, and so he stopped the story about the pigeons, and the daughter said, “Dr Ellis, I wonder would you like to see my father’s back room. Nobody from the hospital has ever visited this house before”. So she took him to the father’s back room.  These filters are hard to see because the room is absolutely tiny, but it is absolutely stuffed full of trophy’s and portraits, not just pictures but he has his pigeons painted.  And this man was at one time the UK champion pigeon racer, “and you see those sheds in the garden”, she said, “there are two to three hundred pigeons in those sheds.  He feeds them, he waters them, he cleans them, he loves them.  And his top racing pigeon sold recently for £20,000, my father’s not giving up his pigeons doctor.  He would rather die than give up his pigeons”.

So what I hear from you all, and from all the work that’s been done by Julia and the maternity team, we do talk about systems that provide personalised care but I wonder about how we talk to women when we’re offering them choices.

I looked after a woman who had a diagnosis of a baby with a lethal abnormality, so it was very clear that this baby would not survive once it was born, and the usual foetal medical services, we offered her a choice of stopping that pregnancy, and she very unusually actually because of the type of abnormality it was, the baby had anencephaly. She decided she would continue with the pregnancy, and we supported her of course we did, in that.  But what she talked about afterwards was that every time she came to the unit, so she had the usual pregnancy complications, a little bit of bleeding, something that was nothing to do with the abnormality the baby had and every time she came, people tried to persuade to change her mind.  They talked to her about the decision she had made because it was not usual in this situation.  And they tried to talk her out of it again, and she said “why is it that I’ve made a decision and people are not respecting that. Why do they think that they need to get me to do what most people do?” So I wonder do we truly speak to women about what their priorities might be?

You’ll have seen quite a lot I’m sure in the media about the new NIPT testing for down’s syndrome, and there’s been quite a lot of discussion along these lines, and I think this is very interesting, but actually when women are offered a lot of choice in our system aren’t they, they’re offered a lot of choice about screening and I wonder again, do all of our services talk to women about whether they really do have a choice and is part of that choice not to have the screening at all, if they perhaps wouldn’t act on the result, and so I think our systems are very good, but is our personalised approach to care really personalised to those women and what there pigeon priority might be, which might be different to somebody’s else’s of course. And also might be different to what we might do in our own situation or in our own practice, but what is also very interesting is, and Elizabeth has already alluded to this, is the Montgomery ruling which has come in across the UK as a change in the law, and I’ve got to apologise because the language is quite difficult but this is really the shared decision making point.

So many of you may know that Nadine Montgomery was a lady who had a baby sixteen years ago, and during her labour she had shoulder dystocia and her son was born and went on to develop very severe disabilities, cerebral palsy, requiring lifelong care. She was a lady with diabetes, she was small and she then took the Lanarkshire Health Board to court and what happened during that court process was, that they allowed the appeal to find against the Health Board.  Key point about that appeal was that when it was described what the obstetrician had said to her, at no point was an elective caesarean section offered, and the obstetrician said “well it was because what has happened to her was very low risk, it was a tiny likelihood”.  But when that was explained to Mrs Montgomery she said “But if I had known what would happen, the devastation that this shoulder dystocia happened to my son, it did not matter what the level of risk was.  That was very high risk from my opinion to be something I wouldn’t have taken a chance on.” And the law found in Mrs Montgomery’s favour.

So the law has now been changed so that what risk is talked about, the judge would have previously said, “what would another reasonable doctor have said to that person?” It has now changed, “what would that person expect to hear about. What might be different about that individual that might make them feel that a certain risk was important to them. Or what about their personal circumstances such as diabetes, such as a large baby, what might make them have risks that were different and needed to be talked about differently from the next person”.  So the law has put the person in the driving seat.  It’s no longer about the doctors’ opinion when they’re having a conversation about consenting for a procedure, it’s nothing to do what the doctor thinks, it’s about what that person perception of risk would be.

And so actually that has come from an obstetric case, and you’ll have maybe seen that the Royal College of Surgeons just last Friday has published a guidance document about talking to people about consenting for procedures, and making sure that we take enough time with them and these are not just operative procedures, this is anything we talking about intervening. We take enough time with people, explaining to them the risks and the benefits of that, but also talking to them about possibly doing nothing at all and whether actually that might be the right thing for them as a person.

So, again I think that we are leading the way in maternity services with this changed style of shared decision making and this personalised approach to care. I was interested to hear Sarah Jane just briefly touch on variation in practice.  Across the UK the hysterectomy rates are varied by a factor of fourfold and in obstetrics in Scotland our induction of labour rate varies from 18% in one part of the country to 32% in another part of the country, and any of you who have seen the RCOG indicators project which is the English data I’m afraid.  Anna Knight’s in the audience and nodding at me, who was one of the authors, I’m afraid that those numbers are just the same in England.

So what are some places doing that other places are doing differently? But of course the real point of that variation is, where are the outcomes different, where are we achieving better outcomes from mothers and babies in one place than in another. And even our personalised care, do all of your units have a communication system that looks from the neonatal unit to wherever that woman is having her care?  There’s a sort of a photo taken somewhere, isn’t there? On a bit of a polaroid, really? With Skype and Facetime, we can’t let the women see her baby from along the corridor?  Even in ICU there are some places that have a link with a webcam and a tablet.  We’ve just set one up in Scotland the tablet portable device is taken to wherever the woman is.  Do we all have that?  What about fathers and parents, support partners staying overnight?  Bit of a soft seat in the corner with a pillow stolen off the woman’s bed on it?  That’s lip service, isn’t it?  Do we really provide facilities for the dads to stay, or the support partner to stay?  Do we say we do, but actually we don’t really.  So is that a personalised approach to care I wonder?

And the other thing I’m really proud of in maternity services, is all of user engagement, because I think what we’ve done and what the review team did for all over the country was really went out there to talk to women. To talk to them about what they wanted.  But I noticed Lily’s talk, she talked about staff experience and user experience.  What about the staff who are users, and their experience? For the purposes of research, I have used my own maternity service three times.

[Laughter]

But I wonder if we’re missing a trick. Most of the rest of the health service doesn’t use their own service.  All orthopaedics don’t have hip replacements.  The maxfax surgeons don’t break their jaws and need to be wired up on a Friday night! But we all use the service that we’re in, and do we use our critical friends, our own colleagues who are absolutely the experts, the right people to help us, perhaps to help us get our service better.  I noticed, my first baby, there wasn’t a soap rack up here, you had to pick your soap from the floor, we just had an SPD, I didn’t want to bend over and pick up my soap, but I would never have known that as an obstetrician, never.

So are we missing a trick as unique amongst health care services, where lots and lots of our staff come through our own service, and can of course helpfully point out what might be done a bit better.

So I leave that with you. I don’t mean that we all have to go and have another baby, although our beautiful new midwife led unit in the Royal Infirmary, most of the obstetricians who walked into it said “oh I might think about this again because it’s so lovely.

So I really welcome your feedback, I’ve got an email address, you can Tweet me, and what I’d really like to see is some realistic maternity care, as well as the realistic medicine that I’m trying to roll out across Scotland.

Thank you Julia.

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