Episode 2 | Rare Diseases

Hi Everyone,

We are absolutely blown away by the downloads and feedback that the podcast is getting. Thank you to everyone that has left us a review and personally reached out to us to give us your thoughts.

In this episode we are focusing on rare diseases (or conditions as Kathryn prefers, she doesn’t like being thought of as diseased!) and what you need to know, if you have this condition and want insurance.

Our 3 key takeaways,

  1. 1 in every 20 people in the UK has a rare disease
  2. Insurers trust that GP reports are accurate, but there are times that they are wrong
  3. A case study of sickle cell anaemia

Andrew has expertly stayed away from technical jargon, but please forgive Kathryn for going off on a smidgen of medical info, this is a subject she is very passionate about!

There is another teaser at the end in our ‘Truth or Lie’ feature and you need to decide again if it is Kathryn or Andrew that is a liar. But! Like last time you have to tune in to episode 3 to hear the answer.

Kathryn:       Hi everyone, this is episode two and it’s all about rare diseases.  I’m Kathryn.

Andrew:       And I’m Andrew.  This is the Practical Protection podcast.

Kathryn:       So first things first Andrew, everybody is dying to know – I know from the whole eight people that responded to the poll that I did on Twitter, everybody is dying to know which of us is telling the truth and which is telling a lie.  So I’ll repeat mine first.  So mine is that I have thalassophobia and that I have never been on a boat.

Andrew:       Yeah and mine is that my interest in all things medical started when I was aged five and I chopped my middle finger off in a deckchair.

Kathryn:       Okay, so I think I’ll go first with this.  So I am going to tell everybody – I feel like we need some kind of, you know, that kind of heartbeat – kind of do do do –

Andrew:       Oh yeah, okay.

Kathryn:       Yeah, that I’m telling the truth.  I have thalassophobia which is a fear of dark water but I am also telling a lie in the sense that I have been on boats and I have actually also done scuba diving as well.  And I’m completely grossed out that you missed your middle finger.  I’m really like cringy now over things like that.  I don’t know why.

Andrew:       Yeah, no, I – so I – and I struggle to tell the story as to how much I can remember and how much it’s – I don’t know the word for it, where it’s like a movie.  I definitely visualise it in the third person but yes, basically I was taken to hospital with me in one car and then the neighbours brought part of my finger in the other car in a bag of frozen peas, so the story goes.  It doesn’t affect me for much now, so my middle finger is like the same length as the two fingers next to it on one hand and it only really affects me when I go ten pin bowling and I kind of have a claw finger a bit.  So that sometimes the ball doesn’t go.

Kathryn:       Nice imagery!

Andrew:       Absolutely.  So – as with anything, but it is actually – last week I thought of it in the context of this, so one of the things I’m doing on other days of the week at the moment is doing some underwriting rules and we were doing – I was doing amputations.  And I kind of thought technically I’ve, you know, I’ve had a finger amputated but when you write these rules, you’re assuming something, you know, I guess frankly more dramatic or more –

Kathryn:       Yeah.

Andrew:       So yes, that’s me.  So on that occasion I was true and you were half true, you’re claiming for?

Kathryn:       I was half true.

Andrew:       As it should be, yeah.

Kathryn:       Ooh.  All the advisers are like – all the underwriters now are like high fiving you in the air and like giggling in their seats and all the advisers are now just squaring up, shoulders back, ‘Bring it on, Andrew.’  So I think we both agreed, didn’t we, we were going to do something completely different to start this off but we feel that it’s much more important that we focus on events that happened very, very recently.  So obviously at the end of last week, we had the very unfortunate thing in the UK where the woman, Caroline Flack, decided to take her own life due to the – I think, no matter what you think of the situation, whether or not you believe whatever happened or not in her personal life, the absolute relentless trolling and bullying that she had from media and social media and it’s quite important – I think both of us feel that it needs to be just spoken about a little bit.

Andrew:       You know, I’ve said before I’m a typical 40-year old, 41-year old male and so my – the three funerals I’ve been to of friends that I’ve known have all been men who committed suicide.  Obviously, you know, in very difficult circumstances and certainly one, I think, would have been in that – nothing like this, but high pressured environment and every human is different and I think the risk is you make it about, you know, you can make all these things the same.  A horrible situation and it does, it kind of brings home the importance of some of the stuff we do and the sensitivity we need to have.  All of us I think, whether our role in this is designing questions to be asked, whether it’s actually asking those questions to people, whether it’s dealing with claims, you know, this is stuff we are nearer to than probably most people on the street but it still doesn’t take away the kind of shock when things like this actually happen.  Yeah.

Kathryn:       No, not at all.  I mean, I think – obviously I went on Twitter and said – and I would never, ever equate what I’ve been through anywhere to near what Caroline has, but I had some recent trolling on Twitter and it was only from – it must have been – I think it was less than 10 people or so, possibly even less than five, I can’t remember now because I’ve fortunately managed to block it out as much as I can.  But it was awful and I think it’s that kind of thing of – I’ve got no shame in admitting it, I mean, I was relentlessly bullied at school and it was awful but then when I got home, even though in a sense it didn’t stop in my mind, you know, I would remember it and different things, it kind of stopped whereas now with social media, you know, there is that concern and I’m worried about it for my kids as well, is that the bullying doesn’t stop, it can carry on.  So say when these trolls were starting with me the other week, it was just message after message after message.  You don’t even get a chance to, you know, speak, you know, even if – and I would try with each person, I would try and send a message just to say, ‘Look, I think you’ve misunderstood maybe the message I’ve tried to give out.  If you want to speak, you know, maybe we could private message.’  And they would just go and go and go and go and eventually I would just, you know, I got to the point where it was a case of, ‘Right, I’ve tried really nicely to speak to you.  I’m just going to block you,’ and I just – I didn’t even start – I just kind of had to do that for my own mental health and the fact of the matter is, I had to do that for my mental health over something that was such a small group of people and to think what she would have been going through with the amount of the contacts and everything, I think it’s an incredibly sad situation and one thing I think is a good thing to maybe suggest that people look into is – obviously familiarising yourself with things like the guidance from The Samaritans.

I did a video on it a little while ago about their Sssh listening techniques as to how to really try and listen to someone if they’re not feeling well and myself and Alan not long ago did the mental health first aider training with MHFA England and they are the ones that do the really official version.  So whilst not everybody wants to do those courses, it’s the kind of thing of, you know, if you’re able to look into them, even if you can’t attend the course, if you can just look around some of the best guidance practices.  Sort of like make sure that you hear those little – sometimes those little trigger words that you don’t even realise are trigger words that someone says to you.  I think the general rule of thumb is, just don’t be a douche, you know –

Andrew:       Yeah.

Kathryn:       In a sense.  Just don’t – if you’ve not got something – it is that thing of, if you’ve not got something nice to say or you’ve got something judgemental that you’re going to say about someone, just keep it to yourself or, you know, if it’s something that you’re prepared to say to somebody on social media, if you’re not prepared to say it if you were next to them – that person, to discuss with them how you’re feeling or how they’ve come across to you, then just don’t say it.  You know, it’s quite simple.  But anyway, let’s get on to this whole thing about rare conditions and obviously I know we said rare diseases but I need to say conditions because if not I feel like I’m diseased and I don’t like that.

Andrew:       Okay, yeah.

Kathryn:       And – let’s change the terminology straight away kind of thing.

Andrew:       Language is – I guess, as per the top, I mean I think that often is one of those things where, hopefully, interesting things will come out for me and you and you listening from these conversations and it is a natural flow I think from the first – from our – what we were talking about just there with mental health as a specific, but I guess you understand that, Kathryn, in sort of some of the lazy terms underwriters might use about impaired lives or –

Kathryn:       Yes.

Andrew:       Blind lives or whatever and yeah, diseases and conditions is almost that next level beneath of going, ‘Can that matter to people?’  Well it can, right?

Kathryn:       Yeah, well yeah because I am one of those people, you know –

Andrew:       Yes.

Kathryn:       You know, taking it – I am impaired and I am diseased.  So, you know, I feel like my, you know, if anything happens to Alan, my Tinder profile is going to be wonderful isn’t it?  You know, kind of thing.

Andrew:       You are human, some might say.

Kathryn:       I am human.

Andrew:       Yeah.

Kathryn:       You know, yeah, I always used to say this thing, you know, like when I was at school and I used to say, ‘It’s not normal to be normal,’ you know, I don’t think it is, you know, I think everyone – to me, I would find it strange and I can’t think of anyone that I know that doesn’t have something, you know, I mean obviously we know each other and now I know you’ve got a dodgy middle finger on one hand that I’m now going to be clearly looking for next time I see you in person.  But, you know, we’ve all got something that we have but I mean, how many – how often is it that, you know, in a sense how – is there kind of like anything out there that says just how many people really do have like these rare conditions?

Andrew:       So yeah, so the definition generally used of rare disease is one that affects less than one in 2,000 people.  So picture your local village or your very large secondary school or whatever it is and it’s less than one in 2,000 people.  The really interesting and sort of magic trick with numbers is that there’s so many rare conditions that it ends up affecting around one in 20 people in the UK, so around 3,000,000 adults in the UK will have a rare disease.

Kathryn:       So that’s really surprising as well because wasn’t it last week we were just saying it was about one – just one in 100 or something people will have in a sense epilepsy, which seemed like a really like, wow that’s a lot of people actually.  This is even more so – one in 20 people.

Andrew:       It’s – I guess in terms of why it’s really important to think about, those numbers are increasing and are only going to increase and again we touched on some of those reasons in epilepsy last week.  Whereas, I guess as medical understanding comes to the fore, then you realise that things that you thought were actually one condition become in effect rare diseases and often that’s the challenge for anyone who’s – whether a doctor or an underwriter or the patient or customer, client – is understanding well what was – was that something before and if so, what was that and what has made it into a rare disease almost?  Is it something that’s new that simply hasn’t been found before or is it a subdivision of something that’s existed before?

Kathryn:       Yeah.

Andrew:       I think what often happens with these in terms of underwriting and life insurance and critical illness and income protection in general is that rare diseases take much longer to diagnose than other conditions typically and that’s for a number of reasons but a big one is that they are rare for a GP to diagnose as well.  So there’s some scary stats that, you know, that a rare disease typically takes five to six years to be properly diagnosed and I know that you will have stories of both yourself and –

Kathryn:       Yep.

Andrew:       People that you speak with on the phone who absolutely will kind of verify that stat.

Kathryn:       I’m gearing up for my story, don’t you worry.

Andrew:       So you have that period where in reality that person, if they’re applying for life insurance, if they’re applying with some symptoms with maybe some misdiagnosis and we have that to talk about, right?

Kathryn:       Yeah.

Andrew:       The other – I think the other interesting thing from an underwriting perspective is that it’s less likely when this – when rare conditions have been diagnosed, that they’re going to have a beautifully pre-programmed rule to deal with them in a very fair way.  So you actually end up with kind of a back to basics underwriting where you’re – you do have to do some desk-based research, understand the condition and apply the decision.  Which actually can make these a lot more interesting and, dare I say it, fun to underwrite because you are back to that point where you have a bit more freedom.

Kathryn:       I mean I think it is – it’s like rare conditions is something that really interests me on the basis that obviously we speak to a lot of people that are classed as having a rare condition.  Now, I will obviously – and I’m sure that there’s plenty of people who know me and plenty of underwriters who are right now going to cover their ears when I say hypermobility syndrome.  So, I have hypermobility syndrome, okay?  I know that it’s a rare condition and quite frankly I know that because I was diagnosed when I was 12 and I was treated like this massive oddity.  I was – there was two key professors in the UK who did the – sort of like the diagnoses.  I was shipped between both of them in London and Leeds.  The person in London actually took photographs of me in my contorted positions for his medical students as, you know, as an example to teach them, which when you’re 12 makes you feel like a complete and utter freak obviously.

Andrew:       Yeah.

Kathryn:       When it comes to hypermobility, for the underwriters out there, I am a full nine out of nine on the Beighton score.  I went through my teenage years when the hormones were really bad – I have the bad side of hypermobility, in that there was one week when every single day for a week I was in A&E with a new injury and at one point I had my arms and my legs all out of commission and as a 14-year old, I have to say it wasn’t fun.  You know, and then all of a sudden you’re back to almost like a childlike life – very young childlike life and a parent having to look after you which is completely demoralising and it was rare.  And at that point, it was so rare.  I was originally diagnosed as having hyperextensibility syndrome because that was the terminology that was given which I – luckily my parents had private medical insurance.  We saw the medical notes where the doctors had accused my Mum of having Munchausen’s and different things like that.  And we went to this consultant who within a few minutes said exactly what I had, realised it actually had been passed on from my Mum through her Dad and we could go back through the line a bit as to find out where it is.

It then obviously changed quite quickly to then being more commonly called hypermobility syndrome and I don’t want to sort of make it seem as if I’m saying like everybody with hypermobility is absolutely hunky-dory healthy and all that, because I know that I’ve obviously not had – well when I was younger I didn’t have a good go of things and touch wood, for whatever reason, things have gotten better but not everyone does and some people who have actual Ehlers Danlos Syndrome do have potentially a lot more – say like the organ involvement.  Now, I’ve had lots of tests done so I had my heart checked which showed that there was no complication with what’s known as Marfan’s which is a similar kind of connective condition.  I also had dexa scans done just to make sure the bone density as to how everything was working on the inside and everything was showing up fine with that.  I was just going to be much more prone to injuries because everything is just a little bit more looser in me than it should be.

The thing that gets me – so with stuff like Ehlers Danlos Syndrome, now I get the fact that, you know, underwriters and everybody have to take into account what could potentially come and how conditions can progress.  So, you know, having hypermobility and Ehlers Danlos Syndrome I would now be classed by a GP or a diagnosis as having Ehlers Danlos type three.  So if went for an application and I said – someone said to me, ‘Have you been diagnosed with any of these?’  I could say, ‘Well I’ve been diagnosed with hypermobility syndrome.  Not been diagnosed with Ehlers Danlos type three because that’s not what I’ve actually been diagnosed with.’  But the ways that GPs are classifying it now, people are – from people that we’re seeing and if people are just walking into a GP surgery with bendy, you know, wrists, bendy elbows and they’re being told, ‘Oh, well you’ve got Ehlers Danlos syndrome type three, don’t worry, it’s not the one where there’s going to be any kind of things going on in the inside.  You don’t have the stretchy skin, but yeah, okay this is what you’ve got.’  So they then have on their medical records that they’ve got Ehlers Danlos Syndrome which immediately is a huge fag, especially when you’re looking at critical illness cover.

And this is sort of like a bit of advice that I want to give to advisers out there, is that if you do have someone come to you to say, ‘I’ve got hypermobility syndrome,’ the first thing to do then is to say to them, ‘Have you ever, ever heard the words or been told Ehlers Danlos Syndrome?’  Then also check, you know, ‘Have you been told Marfan’s – Stickler Syndrome?’  There’s a whole suite of different ones that are all connected and it’s so, so important because that completely changes what the indication will be and what the terms will be.  And it’s really – I have to say annoying and I get that from an insurance point of view and I fully get that from an underwriter’s point of view, you get the name of a condition and it is going to categorise in a sense that person and I get that.  But there’s just this kind of thing at the moment where things aren’t matching up right.  You’ve got GPs who are diagnosing Ehlers Danlos type three when they just mean hypermobility syndrome.  I mean, they may mean Ehlers Danlos type three but then what Ehlers Danlos type three means needs to be changed in how it’s seen by insurers.  Do you see what I mean?  How there’s just – it’s not really adding up right now because people can just have hyperextendable joints without all the inside bits going on as well.  Does that make sense?

Andrew:       Yeah.  I guess the first thing to acknowledge is that having promised we won’t do much technical jargon, I’m delighted that you’re the first person to have trashed that absolutely with about 17 different medical terms in two sentences where –

Kathryn:       I’m sorry!

Andrew:       I thought it would be me, so well done and that gives me free rein now.

Kathryn:       I’m sorry everyone, I’m sorry.

Andrew:       But no I totally –

Kathryn:       I’ve got a passion about this.

Andrew:       Yeah, and it is that level of detail that makes the difference and it – and as you say, it’s trying to – I guess as an underwriter who – the first time you see a case is probably by the time it’s – someone’s entered details on an application form.  I think a lot of those conversations that go on between you and a client aren’t lost – aren’t understood by the underwriter or potentially actually nowadays, the first time an underwriter sees it is when they get that GP report in and they’re trying to go, ‘Well who do I believe here because I’ve got a client and an adviser who have said this and the GP that’s said that.’  And you’re left going, ‘Well which, you know, which is it?’  And let’s be honest, the assumption – the starting assumption is that what the doctor is saying is going to be more credible than what the individual’s saying.

Kathryn:       Yeah.

Andrew:       And I think the situations you described there are where, for any underwriters listening, almost that – well is that always the case and when might it not be true?  You know, there’s obviously – there’s, you know, there’s some obvious situations where it won’t be true where literally it’s the wrong person’s medical records or something like that but these subtleties do come out more for rarer diseases – for rarer conditions.  They come out more with emerging conditions and where definitions are changing because, you know, if the general theme of this – from my side, is often underwriters are humans too, so are doctors, so are GPs and it’s easy to sit there when it’s happening to you and your family and criticised the hell out of GPs for not being on top of things –

Kathryn:       Yeah.

Andrew:       But as back to the nature of this whole broader rare diseases symptoms thing, the fact is for that GP, they spend half their day looking at people with colds, flus, vaccinations and then sort of once every two weeks someone different walks in and probably once every three months someone walks in with, you know, some of these things, none of which excuses it and all of which is also we need to do something that works for these.  I guess my overall thing and back right to the top where – to your mental health piece, is a lot is about listening and listening to the symptoms and checking do they match that diagnosis and really understanding that becomes the core skill I think for an underwriter and insurer who wants to do well at this, who wants to actually make the right decisions on these cases.

Kathryn:       I speak to underwriters obviously and they are human and I think that the big thing as well is the fact that a lot of these decisions can be subjective at times, especially when we’re going into the rare conditions which can be hard, you know, you can sometimes ring an insurer, you can speak to one underwriter and get a completely different indication if you speak to someone else.  And that can be really hard for obviously managing a client’s expectations but I mean, just some examples of rare diseases or rare conditions, sorry, I really don’t like saying diseases – rare conditions that we’ve come across.  You know, some big examples there’s like Cowden syndrome, there’s Smith Louis Opitz syndrome, mitochondrial disease, there’s one that I have no idea how to pronounce, Alan’s been helping them – it’s HLH, it’s – I’m going to try it, Hemophagocytic lymphohistiocytosis, okay.  And that’s it – and it’s difficult because as well, I’ve been told, now I don’t know if this is right or not, I feel like I need to sort of like lower my voice as if this potentially an utter, utter secret but I’ve been basically much told that reinsurers are up for anything.  They will look at these things and they’ll go, ‘You know what, I’ll give that a crack.  I’ll give it a good go, see if I can offer that insurance.’  But then the issue’s with what the insurers are also happy to have a go at.  So I mean, kind of is that the right kind of way of looking?  Is that right that reinsurers are pretty much, ‘Bring it to us, we’ll see what we can do?’ or is that kind of, no that’s not right what I’ve heard?

Andrew:       I think it’s probably a reinsurer – it’s a reinsurer’s view but there’s definitely some truth in it at the moment and I – yeah, I think to understand why that might be – so back to reinsurers and insurers, they end up paying let’s say 90% of the claims, they take most of the premium.

Kathryn:       Yeah.

Andrew:       A slightly odd thing through that is the insurer has to pay for all of the medical evidence and obviously the time that it takes their underwriters to make a decision on the case.  So it’s not – generally it’s not the adviser or the customer who’s paying for that medical evidence.  It’s not the reinsurer, it’s the insurer.  So that’s what drives, I guess, that more sceptical – trying to find a positive word – that extra factor in that insurer’s decision is, ‘If I’m going to spend £100 getting a GP report and it’s going to take someone an hour to read it and make a fair decision on it, then do I – how likely is it that even if I can offer terms, if I can offer a fair premium having read that, that that person is then likely to take up the case?’  And they, you know, will have done research and they’ll have used – they’ll have tried – at least they should have, tried and on times they’ll go, ‘Well we’ve done this ten times.  Each time it comes up either with a decline or with a very highly increased premium and then none of them continue.’

Kathryn:       Yeah.

Andrew:       So that can be what’s going on and I think that’s where I would have sympathy for the insurers.  That said, I think there are also other situations where insurers do just look at it and frankly it goes, you know, risks going into the, ‘Well this is just too hard and it doesn’t fit in our nice smooth funnels and so we’d have to charge everyone a bit more,’ to do some of those things I’ve talked about.  And I think this is, you know, bluntly this is kind of bigger stuff, this is – some of it’s quite philosophical and –

Kathryn:       Yeah.

Andrew:       And some of it’s down to earth, practical but clearly the less time you spend doing that, potentially the cheaper premiums you can give to people who don’t have rare conditions.

Kathryn:       I get that, because at the end of the day it’s a business as well.  You’ve got to be profitable.  You’ve got to make sense but it just – I think sometimes – I mean I’ve had completely different – I’ve got a couple of examples which were just completely different to me which I think are a good example of this.  So I had somebody come to use who had Cowden Syndrome and very, very rare condition.  Everyone but one insurer was just, you know, they just weren’t even prepared to discuss it.  But one insurer actually turned around and said, ‘Look, we’ve got no guidance on this.  Obviously this is so rare, it’s not even in our manuals.  Tell us what it is, tell us how it affects them and let’s see.’  And that just absolutely blew me away because it was just so nice to actually have, you know, that thing where the insurer’s gone, ‘You know what, just actually let us see what we can do. We are prepared to give this a go.  You know, let’s look at the actual symptoms of the condition, not the condition itself because we have no idea.  Let’s put our hands up and admit we have no idea about this one.  Let’s just see how it affects their ability to work.’  Which it didn’t, which was brilliant.

But then there’s another example.  I had somebody with mitochondrial disease.  Now this person had it to – it is a genetic condition so I understand – and I do understand looking at the condition if you do any Google searches on it, why insurers, underwriters would be – from an initial point of view, quite cautious.  Now this person had it extremely mildly.  Now, the thing with this one that kind of got me is that nobody would consider it and from an adviser’s point of view and from somebody who isn’t inside the insurance side of things, the reason that I found that quite interesting in a sense and sort of like a little bit confusing was that this person had just been told that she was going to be able to go through IVF treatment.  The reason they were doing the IVF was to in a sense strip out any of the condition so it wasn’t passed on.  So to me it was a case of, ‘Hang on, so here’s this person who has this condition, basically it isn’t, you know, in a sense massively symptomatic and yet, you know, and the doctors are saying that she is healthy enough to go through the process of creating a human for nine months, going through labour, all of that kind of stuff.  They’re saying she’s healthy enough to do that but yet she’s not healthy enough to get – even be looked at – considered for life insurance with sort of like the standard insurers?’  I found that quite surprising.  So I don’t know – what would be – in a sense, what can advisers do in that kind of a situation?

Andrew:       Yeah, so I guess to pull the two together – so I think this variety and different approaches will often come where you’re either hitting conditions that just haven’t been considered at all in that insurer’s philosophy or that reinsurer’s philosophy, or more frequently they will be there but they’ll just have either something that says CMOs – so refer to chief medical officer or IC which is even more half-hearted, which is individual consideration.  Which sounds great and kind of exactly what you would want it to say but basically means, ‘We haven’t had the time to think about this at this point so come back if there’s a real situation here.’  And the reality then is – I guess frankly, how often, how hard are people going to work for those?  Because especially the IC – the individual consideration is as likely to end up being standard rates as it is to being a decline.  There’s kind of – it is just a, ‘We don’t have enough research or data to do something on this.’

So then to take that second example and I think this is a common theme and frustration right, is where there is real-life things that are going on that show that someone – I don’t know, in quotes, ‘Isn’t that bad or is doing well at the moment or is doing well.’  The starting technical point here is to say, life insurance is very, I guess, tightly priced and so in essence if you’re 35 and applying for a 25-year term, the assumption by the time you’ve gone through that insurance – that kind of insurance application form, is that you’ve got, let’s say a one to two percent of dying – two percent chance of dying if your standard rate is within that term so you’ve got, you know, one in a 100 or two in 100 chance of dying in the next 25 years.  When insurers, as they do, say, ‘Well the maximum we’re going to charge is about three or four times,’ and even that’s very, very rare as you would know, but to go up to three or four times then really that person has still, in the insurer’s view, if the insurer thinks that person has a 10 in 100 chance of dying, they will be declining them.

You know, that person potentially goes in and says, ‘It’s not that bad, you’ve got a nine in 10 chance of seeing it through to retirement.  You’ve probably got a –’  Then they come to insurance and where everything is this really tightly, tightly packed out place at the moment in the UK market – the emphasis changes.  So I think that’s why that can correctly happen I suppose and that’s not to say that there aren’t equally situations where people aren’t looking at that full picture.

Kathryn:       I think it would be good to make sure that sort of like what I see is the front line, is a normal application process is what you think would happen, Andrew.  So, what do you think a standard straight through application would happen and then what would happen for say somebody with a rare condition?

Andrew:       Before it gets to underwriting, I think it’s really important to recognise this; a conversation that’s gone on between you or someone in your office or an office like yours and that client.  So the first time an underwriter sees a case is when an application form is received in the office but I’m very aware from spending time in your offices and similar offices that, before that point quite a lot of contact has gone on.

Kathryn:       Yeah, I mean obviously we’re an adviser – broker.  The way that we are specifically set up is that we chat to a client and just like all or hopefully all advisers, we go through what’s getting to know your client, so we’ll get to know their personal circumstances, why they’re wanting the insurance and being able to sort of like help them know how much insurance they need.  So we’d then obviously chat through health and different things like occupation and travel and sports and stuff like that and I think for anybody who doesn’t have health conditions or anything that’s sort of like flagged as a risk, they would then go down what we would class as the normal application process.

We have to do a lot of presales research for each of our clients because it never happens – you can’t just turn around and go, ‘Well this person’s in their 30s, they’ve had stage 1c breast cancer and we need to do the research.  Ooh this person’s also in their 30s, stage 1c breast cancer.’  You can’t ever rely upon what you’ve done before.  You get a general feel as to which insurers are generally better for different risks compared to others and, you know, sometimes someone’ll ring up and they’ll say something and you’ll just so straight away – you’ll go, ‘Right, I know where you’re going to be going with insurer X, Y, Z, because they’re just not going to be right for you.’  You know, in your head, obviously you don’t say that out loud.  But – and you’ll be immediately thinking, ‘Right, you know, but ABC, they could be, you know, they could be a good one here but you still have to do obviously all the research.’

[0:30:09]

Andrew:       I think especially for these rarer ones, the underwriter kind of has to activate and engage that individual consideration and what to do.  So you go back to the – I guess back to underwriting day one and the most important decision ultimately is whether you want to offer terms to an individual, ultimately whether you want to insure an individual or not.  It’s fair to say that nowadays there is a, you know, there’s a lot of pressure not to get medical evidence unless you really need to for pretty obvious economic and efficiency reasons.  So partly you spend less money, also it’s more likely that someone’s going to take up the policy if you can make a decision in two days rather than two months.  The stories that – and the information that either should be being gathered by a good underwriting team asking the right questions and/or a good adviser performing some of that role for them, will vary dependent on the product but ultimately it’s predicting how likely the claim is.  So for life insurance it’s, ‘Are you going to die or not?’  For critical illness it’s, ‘Are you going to have a critical illness?’  The income protection I think is almost where there’s the most scope and where some of those stories and personal experiences really, really can and should make a difference.

Kathryn:       I think an interesting thing on that for me, especially – obviously as starting to look at, you know, we’re obviously wanting to talk about more protection and things and just so like I know we’ve mentioned life a few times so I’m going to put you on the spot again a bit.  So say like looking at hypermobility or Ehlers Danlos Syndrome, stuff like that – so the difficulty is – the biggest, biggest difficulty is critical illness cover.  Now, that gets to me because as far as I’m aware, there is no – nothing that would suggest that having Ehlers Danlos Syndrome would you make you at a higher risk of developing cancer, Parkinson’s disease – if, you know, Ehlers Danlos Syndrome itself doesn’t, you know, that in itself doesn’t mean that you’ve necessarily got a heart, you know, problem.  It doesn’t necessarily mean you’re going to have a stroke or anything like that.  So I don’t, I mean I’m not going to say that I’m a medical doctor so obviously I’m not – I am a doctor but not a medical doctor, but I don’t understand why it’s such this hard line no for people – generally for people.  I have managed to do it, it took a lot of involvement and research and debate we’ll say with an insurer.  The general rule of thumb is a no, but even if somebody with Ehlers Danlos Syndrome does have a bit of an issue with their digestive tract, even if they are incontinent, how does that make them – why does that make them an absolute no for these other policies?  And it’s just the fact that there’s not even a conversation at times, it’s just no.

Andrew:       The reason for a lack of conversation I guess is, if it’s going to be no it’s better that someone says no quickly rather than waste anyone’s time.  But – so why – should it be a no in the end or not?  I mean, I do think it depends on severity.  You’re right, there’s – the main issues are going to be digestive or potentially for variants of – there can be cardiac – an increased chance of cardiac events and –

Kathryn:       If we’ve ruled out Marfan’s – if we’ve moved on from Marfan’s because Marfan’s is the one that’s the heart side of things.  The Stickler syndrome is the one that has the involvement with the eyes so I’d understand if those were but they would be very, very specific diagnoses.  So a GP’s not – I don’t believe a GP is going to diagnose someone as Ehlers Danlos Syndrome and completely miss the significant physical traits that are associated with Marfan’s and Stickler syndrome and the other hyper­mobile conditions.  So, you know, if someone’s going with Ehlers Danlos Syndrome, if the doctor feels that there’s – especially the potential risk of them not having diagnosed Marfan’s and Stickler, they’re not obviously going to miss that so if the doctor’s not wanting them to go off and have any – if it’s just a case of, ‘You’ve got Ehlers Danlos Syndrome, go on about your life.’  You know, or even for a case of them saying, ‘Right well you actually – we’d need you to have a medical because we want one of our nurses to come and see you and make sure you don’t obviously have Marfan’s or Stickler syndrome.’  I mean, it just doesn’t seem like it’s right at the moment and I’m sure that there’s plenty of underwriters banging their head against their desks now and probably quietening me down until your voice comes back on.  But yeah, it seems – just it doesn’t add up to me.

Andrew:       As I say, there’s the bit around digestive issues and the difficulty there in either applying a broad enough exclusion to work for that or finding a fair increased premium to reflect the fact that there is an increased risk of conditions related to that, there isn’t the long-term research on long-term effects on that and that may be something – let’s be clear, you know, I can’t speak for all underwriters at this point but as you yourself described, the literature is all relatively new because –

Kathryn:       Yeah.

Andrew:       These conditions are still relatively new.  Now that doesn’t give anyone the right or excuse to just decline people for 25 years until you’ve got 25 years’ worth of evidence but I think it is where frankly anecdotes and other things can weigh more heavily.  So as you’ve rightly pulled me up there, the temptation is to keep things grouped in with things that they may have been grouped in with before and saying there’s still this risk that they are linked in some way.

Kathryn:       Yeah.

Andrew:       And I think that’s somewhere where, as underwriters or people who understand risk, we need to be quicker to say, ‘Well actually, this is different.  Just because it’s got the same overall heading, the prognosis can be very different.’  And I think that is a legacy thing and something to push at.  So what often happens within insurers, so let’s do the – let’s do that – so what often happens within insurers is there will be chief medical officers who are specialists in certain conditions and then others who are basically – who are GPs who can advise.  Within larger insurers certainly, there would often be individual underwriters who are tasked with specialist kind of knowledge and so I think with things like this that actually, you know, there will be probably a handful of people right, who really know about this in detail and in case it’s not already obvious, I am not one of them.  I am one of them who has gone to talks on this stuff and understands it well enough to make, you know, to potentially decide whether to put a big amount of a company’s savings at risk –

Kathryn:       Yeah.

Andrew:       Or not on an individual so I understand it or I should understand it well enough to do that but I think, again it just does come back to this thing of going, ‘You know, we need to listen and we need to understand.  We need to challenge, right?’  So if I was underwriting you this afternoon then I would be going to my safe data sources and going and looking those things up and da da-da da-da.  But –

Kathryn:       You would not want to underwrite me honestly.  My medical record’s 500 pages.  I actually got a thank you from the insurer who underwrote me – from the underwriter to say thanks, you know, ‘Thanks for sending that.’  And I was like, ‘Well I’m not taking risks, yeah.’

Andrew:       Yeah, but I think – I think it is that, you know, this rare conditions as a whole piece is absolutely – this is what it is about and it is where different – where very specific diagnoses are being made and I think that is a key thing for advisers to hold to account and to kind of emphasise, that as you say, you don’t make that – you don’t end up with that diagnosis without someone knowing what they’re doing.

Kathryn:       Yeah.

Andrew:       I think potentially a valid question for an underwriter to ask is, ‘Who diagnosed you with that?’

Kathryn:       Yes.

Andrew:       Because there are times where actually you suddenly see a spike in diagnosis and the main reason is because GPs are being incentivised to diagnose that condition, you know, and those kind of things.  If you’re told a professor has diagnosed you with this as opposed to that, that or that, then frankly then that needs to really drive –

Kathryn:       Yes.

Andrew:       A very different decision.

Kathryn:       Oh absolutely.  I think if a consultant’s been involved then you’re talking a completely different level of things, you know, level of evidence and everything which is brilliant which is why I think sometimes with the rare conditions and we get – we can get sometimes a bit frustrated about is, you know, sometimes it’s the case of like well, ‘Look, if you’ve been diagnosed with this rare condition –’ it’s either yes they’ve seen a consultant with a lot of medical evidence but if it’s just the GP that’s said it – and I’m not – I’m don’t mean that to seem like, ‘Just a GP –’

Andrew:       Yeah.

Kathryn:       But it’s just a case of if it is a rare condition and a GP has diagnosed it, then if it is really that condition then one, there should have been more tests and the person needs to know in a sense that they need to have more tests but it could well be that they’ve used the kind of terminology in a kind of sense – you know, sometimes a bit flippantly?  And I don’t mean to say that and I’m not criticising GPs at all, I know that may seem like I am doing that but I’m not doing it, it’s just that it’s what we’re seeing quite a lot of because we see a lot of errors in GP reports and there are times where we’re having to advise people to challenge – not necessarily – well sometimes a diagnosis from a GP but, you know, we’re getting it where GP reports are incorrect and we’re having to say to people, ‘Look, this – you know, basically what you’re telling us is one thing which is absolutely fine, we trust you, but your GP report is absolutely saying something different because they wouldn’t – the insurer wouldn’t make this decision based upon what you’ve told us.’  And then we find out that the person, you know, and it’s happened a lot – but they’re going back to the GP and they’re coming back to us saying, ‘You will never believe what my GP has done – I’m having to go – I’m having to raise complaints, I’m having to get my medical records corrected.  They’ve completely, you know, they’ve –’  Sometimes it’s the wrong people that are detailed in the report, sometimes for whatever reason the GP’s just completely misread the notes of whatever a previous consultant has said and has just kind of – kind of gone off on one.  And I’m not saying that happens all the time and I’m not saying it’s, you know, it’s certainly something that I think that every GP – I can’t imagine it’s any GP that’s doing deliberately or maliciously at all, but it is something that we’re seeing more and more of and I think that’s quite – from an advice point of view, I find that quite scary because I think of all the people that are applying for insurances that don’t have an adviser like ourselves behind them who can say to them, ‘Well you need to write it like this or you need to say it like this,’ and the thing is that some people could be going for insurance and not being able to get it because there’s something in error on their report.

And then there’s other times that people are getting insurance willy-nilly without actually understanding what their medical report says.  So when a report, you know, obviously, if a claim happens then they may actually be completely uninsured and not even realise it.  And I don’t know how to solve that because there’s no easy way to solve that but I just think we’re in a very confusing – potentially dangerous time and it’s just worrying sometimes just to see that and I honestly don’t know what the answers are.  If it’s okay with you, I would like to go through just a very quick case study then we’ve got our first listener’s question.

Andrew:       Yes.

Kathryn:       Which I’m quite excited about.  So the first case here, I just want to give this out there to advisers so I’m going to chat about somebody that came to us who had sickle cell anaemia.  So it is a rare condition but it is one that we see quite regularly.  So I just wanted to give an example for anybody out there who has come across something like this.  So we had somebody who had sickle cell anaemia, also had a silent heart murmur but they weren’t on any medication but they had within the last five years or so had a couple of what’s known as crises due to the sickle cell.  But bar that, they were very fit and healthy and they had been previously declined by two insurers before they spoke to us.

So I was – I did have someone mention to me and it’s worthwhile me doing this – explaining the rating just in case anybody hasn’t really come across that because obviously people don’t always have people that are rated.  So for this person, we got them a business life insurance and the premium was rated 150%.  Now it really confused me when it came to premium ratings and it took ages for me to get the hang of this and Alan always looks at me like I’m really, really silly for not really understanding it but just for whatever reason – I’m good at maths but for whatever reason, the ratings really, really get to me.  So if you’ve got 150% rating, you take the base premium and what you do is – so 150% would actually mean that you times that base premium by 2.5.

So we have our first listener’s question and I’m going to namedrop the insurer only because of the fact that the person is from an insurer.  So I do apologise, this isn’t any kind of endorsement or anything like that.  I know we’re not namedropping but it is – the question is from Phil Hull who works at Holloway Friendly and what he’s asked, Andrew, is if you take two people with identical medical conditions, one has been diagnosed, is being treated and doing what the doctor’s told them to do and the other is blissfully unaware that he has anything going on, then in a sense what happens and what is – how does that work insurance-wise because naturally the person who doesn’t know anything about what’s going on with their health just gets standard rates, goes on, there’s no issues and even in the event of a claim there’s no issues because nobody’s been aware that they’ve had this condition for all this time in a sense.  But then how is that then fair on the person who is being aware of maybe some kinds of signs in their body?  They’re being actively involved with their health and they’re doing everything that the GP has told them to do.

Andrew:       Yes, thank you.  Well now I get two people to have voodoo dolls of me – you and Phil, Kathryn.

Kathryn:       Come on Andrew, how is it fair?  Come on, answer the entire industry, go on!

Andrew:       It’s a good question.  So, I think that – and the bigger picture right is, assuming that this is, I guess, real conditions then in that first situation, that individual is getting the most appropriate care.  They’ll have an improved quality of life and/or life expectancy in the long run so I’d rather be the first person who’s been diagnosed early and has to pay a bit more for my insurance but has all of those good things happening.  And ultimately with any sort of insurance, there are winners and losers.  I guess the warning sign for me in these hypothetical questions that are sometimes asked is, to emphasise that the second person – if they’ve had symptoms of anything.  So if they’ve had numbness or pins and needles or chest pain or anything that’s been asked about, they do need to disclose that.  So it may be that those do, I guess, trip them up or potentially help them find the correct diagnosis for them by going through the application.  I guess the overall moral is you shouldn’t wait until you know something’s wrong to buy insurance so that second person who, you know, hasn’t been diagnosed yet, that’s the ideal time to buy insurance.  So rather than to wait until you know that something’s wrong or something’s been diagnosed.

Kathryn:       Okay.  I think we’re probably coming towards the end of the episode so obviously thank you very much for listening everybody so we’re going on to our next truth or lie feature.  So you need to figure out again which one of us is telling the truth and which one of us is telling a lie.  I have to say, I really can’t wait until we start getting guests on the episodes, having a bit of a three-way going on there.  So Andrew, do you want to go first this time?

Andrew:       Yes, sure.  So, having been true last time I can do my true voice again.  I am a bit of a night owl and I’ve not been to sleep before midnight for four years.

Kathryn:       Just think that’s the same for any parent to be honest.

Andrew:       Yeah!  So I have a seven-year old and a five-year old so it’s pretty stat.  The impact of that has changed me forever.  How about you?  What’s your –?

Kathryn:       What’s my thing?

Andrew:       Yeah, after my statement.

Kathryn:       So – ooh, okay then right so I’ll put on clearly my best lying voice like you say so everyone can know – but my family say that I am a classic case of being quite smart but little common sense.  So I will embarrassingly admit that I cannot work push-pull doors.  Yeah, leave that for everybody.  So I just want to say thank you everybody for listening.  We hope you’ve found this all useful.  If you have any questions or you want to discuss anything or if you want to disagree with Andrew, please do send us a message.  More than happy for you to do that.

Andrew:       Yeah, thank you for that.  We’ll be back in two weeks.  So if you’d like a reminder of the next episode when we’ll be chatting about smoking and e-cigarettes and vaping and all those kind of good things, then drop us a message on social media or visit our new website.  So our website is, or will be, www.practical-protection.co.uk.  Thank you very much for listening and take care.

Kathryn:       Take care everybody.  Bye!

Andrew:       Bye.

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Episode 2 | Rare Diseases

Hi Everyone,

We are absolutely blown away by the downloads and feedback that the podcast is getting. Thank you to everyone that has left us a review and personally reached out to us to give us your thoughts.

In this episode we are focusing on rare diseases (or conditions as Kathryn prefers, she doesn't like being thought of as diseased!) and what you need to know, if you have this condition and want insurance.

Our 3 key takeaways,

  1. 1 in every 20 people in the UK has a rare disease
  2. Insurers trust that GP reports are accurate, but there are times that they are wrong
  3. A case study of sickle cell anaemia

Andrew has expertly stayed away from technical jargon, but please forgive Kathryn for going off on a smidgen of medical info, this is a subject she is very passionate about!

There is another teaser at the end in our 'Truth or Lie' feature and you need to decide again if it is Kathryn or Andrew that is a liar. But! Like last time you have to tune in to episode 3 to hear the answer.

Kathryn:       Hi everyone, this is episode two and it’s all about rare diseases.  I’m Kathryn.

Andrew:       And I’m Andrew.  This is the Practical Protection podcast.

Kathryn:       So first things first Andrew, everybody is dying to know – I know from the whole eight people that responded to the poll that I did on Twitter, everybody is dying to know which of us is telling the truth and which is telling a lie.  So I’ll repeat mine first.  So mine is that I have thalassophobia and that I have never been on a boat.

Andrew:       Yeah and mine is that my interest in all things medical started when I was aged five and I chopped my middle finger off in a deckchair.

Kathryn:       Okay, so I think I’ll go first with this.  So I am going to tell everybody – I feel like we need some kind of, you know, that kind of heartbeat – kind of do do do –

Andrew:       Oh yeah, okay.

Kathryn:       Yeah, that I’m telling the truth.  I have thalassophobia which is a fear of dark water but I am also telling a lie in the sense that I have been on boats and I have actually also done scuba diving as well.  And I’m completely grossed out that you missed your middle finger.  I’m really like cringy now over things like that.  I don’t know why.

Andrew:       Yeah, no, I – so I – and I struggle to tell the story as to how much I can remember and how much it’s – I don’t know the word for it, where it’s like a movie.  I definitely visualise it in the third person but yes, basically I was taken to hospital with me in one car and then the neighbours brought part of my finger in the other car in a bag of frozen peas, so the story goes.  It doesn’t affect me for much now, so my middle finger is like the same length as the two fingers next to it on one hand and it only really affects me when I go ten pin bowling and I kind of have a claw finger a bit.  So that sometimes the ball doesn’t go.

Kathryn:       Nice imagery!

Andrew:       Absolutely.  So – as with anything, but it is actually – last week I thought of it in the context of this, so one of the things I’m doing on other days of the week at the moment is doing some underwriting rules and we were doing – I was doing amputations.  And I kind of thought technically I’ve, you know, I’ve had a finger amputated but when you write these rules, you’re assuming something, you know, I guess frankly more dramatic or more –

Kathryn:       Yeah.

Andrew:       So yes, that’s me.  So on that occasion I was true and you were half true, you’re claiming for?

Kathryn:       I was half true.

Andrew:       As it should be, yeah.

Kathryn:       Ooh.  All the advisers are like – all the underwriters now are like high fiving you in the air and like giggling in their seats and all the advisers are now just squaring up, shoulders back, ‘Bring it on, Andrew.’  So I think we both agreed, didn’t we, we were going to do something completely different to start this off but we feel that it’s much more important that we focus on events that happened very, very recently.  So obviously at the end of last week, we had the very unfortunate thing in the UK where the woman, Caroline Flack, decided to take her own life due to the – I think, no matter what you think of the situation, whether or not you believe whatever happened or not in her personal life, the absolute relentless trolling and bullying that she had from media and social media and it’s quite important – I think both of us feel that it needs to be just spoken about a little bit.

Andrew:       You know, I’ve said before I’m a typical 40-year old, 41-year old male and so my – the three funerals I’ve been to of friends that I’ve known have all been men who committed suicide.  Obviously, you know, in very difficult circumstances and certainly one, I think, would have been in that – nothing like this, but high pressured environment and every human is different and I think the risk is you make it about, you know, you can make all these things the same.  A horrible situation and it does, it kind of brings home the importance of some of the stuff we do and the sensitivity we need to have.  All of us I think, whether our role in this is designing questions to be asked, whether it’s actually asking those questions to people, whether it’s dealing with claims, you know, this is stuff we are nearer to than probably most people on the street but it still doesn’t take away the kind of shock when things like this actually happen.  Yeah.

Kathryn:       No, not at all.  I mean, I think – obviously I went on Twitter and said – and I would never, ever equate what I’ve been through anywhere to near what Caroline has, but I had some recent trolling on Twitter and it was only from – it must have been – I think it was less than 10 people or so, possibly even less than five, I can’t remember now because I’ve fortunately managed to block it out as much as I can.  But it was awful and I think it’s that kind of thing of – I’ve got no shame in admitting it, I mean, I was relentlessly bullied at school and it was awful but then when I got home, even though in a sense it didn’t stop in my mind, you know, I would remember it and different things, it kind of stopped whereas now with social media, you know, there is that concern and I’m worried about it for my kids as well, is that the bullying doesn’t stop, it can carry on.  So say when these trolls were starting with me the other week, it was just message after message after message.  You don’t even get a chance to, you know, speak, you know, even if – and I would try with each person, I would try and send a message just to say, ‘Look, I think you’ve misunderstood maybe the message I’ve tried to give out.  If you want to speak, you know, maybe we could private message.’  And they would just go and go and go and go and eventually I would just, you know, I got to the point where it was a case of, ‘Right, I’ve tried really nicely to speak to you.  I’m just going to block you,’ and I just – I didn’t even start – I just kind of had to do that for my own mental health and the fact of the matter is, I had to do that for my mental health over something that was such a small group of people and to think what she would have been going through with the amount of the contacts and everything, I think it’s an incredibly sad situation and one thing I think is a good thing to maybe suggest that people look into is – obviously familiarising yourself with things like the guidance from The Samaritans.

I did a video on it a little while ago about their Sssh listening techniques as to how to really try and listen to someone if they’re not feeling well and myself and Alan not long ago did the mental health first aider training with MHFA England and they are the ones that do the really official version.  So whilst not everybody wants to do those courses, it’s the kind of thing of, you know, if you’re able to look into them, even if you can’t attend the course, if you can just look around some of the best guidance practices.  Sort of like make sure that you hear those little – sometimes those little trigger words that you don’t even realise are trigger words that someone says to you.  I think the general rule of thumb is, just don’t be a douche, you know –

Andrew:       Yeah.

Kathryn:       In a sense.  Just don’t – if you’ve not got something – it is that thing of, if you’ve not got something nice to say or you’ve got something judgemental that you’re going to say about someone, just keep it to yourself or, you know, if it’s something that you’re prepared to say to somebody on social media, if you’re not prepared to say it if you were next to them – that person, to discuss with them how you’re feeling or how they’ve come across to you, then just don’t say it.  You know, it’s quite simple.  But anyway, let’s get on to this whole thing about rare conditions and obviously I know we said rare diseases but I need to say conditions because if not I feel like I’m diseased and I don’t like that.

Andrew:       Okay, yeah.

Kathryn:       And – let’s change the terminology straight away kind of thing.

Andrew:       Language is – I guess, as per the top, I mean I think that often is one of those things where, hopefully, interesting things will come out for me and you and you listening from these conversations and it is a natural flow I think from the first – from our – what we were talking about just there with mental health as a specific, but I guess you understand that, Kathryn, in sort of some of the lazy terms underwriters might use about impaired lives or –

Kathryn:       Yes.

Andrew:       Blind lives or whatever and yeah, diseases and conditions is almost that next level beneath of going, ‘Can that matter to people?’  Well it can, right?

Kathryn:       Yeah, well yeah because I am one of those people, you know –

Andrew:       Yes.

Kathryn:       You know, taking it – I am impaired and I am diseased.  So, you know, I feel like my, you know, if anything happens to Alan, my Tinder profile is going to be wonderful isn’t it?  You know, kind of thing.

Andrew:       You are human, some might say.

Kathryn:       I am human.

Andrew:       Yeah.

Kathryn:       You know, yeah, I always used to say this thing, you know, like when I was at school and I used to say, ‘It’s not normal to be normal,’ you know, I don’t think it is, you know, I think everyone – to me, I would find it strange and I can’t think of anyone that I know that doesn’t have something, you know, I mean obviously we know each other and now I know you’ve got a dodgy middle finger on one hand that I’m now going to be clearly looking for next time I see you in person.  But, you know, we’ve all got something that we have but I mean, how many – how often is it that, you know, in a sense how – is there kind of like anything out there that says just how many people really do have like these rare conditions?

Andrew:       So yeah, so the definition generally used of rare disease is one that affects less than one in 2,000 people.  So picture your local village or your very large secondary school or whatever it is and it’s less than one in 2,000 people.  The really interesting and sort of magic trick with numbers is that there’s so many rare conditions that it ends up affecting around one in 20 people in the UK, so around 3,000,000 adults in the UK will have a rare disease.

Kathryn:       So that’s really surprising as well because wasn’t it last week we were just saying it was about one – just one in 100 or something people will have in a sense epilepsy, which seemed like a really like, wow that’s a lot of people actually.  This is even more so – one in 20 people.

Andrew:       It’s – I guess in terms of why it’s really important to think about, those numbers are increasing and are only going to increase and again we touched on some of those reasons in epilepsy last week.  Whereas, I guess as medical understanding comes to the fore, then you realise that things that you thought were actually one condition become in effect rare diseases and often that’s the challenge for anyone who’s – whether a doctor or an underwriter or the patient or customer, client – is understanding well what was – was that something before and if so, what was that and what has made it into a rare disease almost?  Is it something that’s new that simply hasn’t been found before or is it a subdivision of something that’s existed before?

Kathryn:       Yeah.

Andrew:       I think what often happens with these in terms of underwriting and life insurance and critical illness and income protection in general is that rare diseases take much longer to diagnose than other conditions typically and that’s for a number of reasons but a big one is that they are rare for a GP to diagnose as well.  So there’s some scary stats that, you know, that a rare disease typically takes five to six years to be properly diagnosed and I know that you will have stories of both yourself and –

Kathryn:       Yep.

Andrew:       People that you speak with on the phone who absolutely will kind of verify that stat.

Kathryn:       I’m gearing up for my story, don’t you worry.

Andrew:       So you have that period where in reality that person, if they’re applying for life insurance, if they’re applying with some symptoms with maybe some misdiagnosis and we have that to talk about, right?

Kathryn:       Yeah.

Andrew:       The other – I think the other interesting thing from an underwriting perspective is that it’s less likely when this – when rare conditions have been diagnosed, that they’re going to have a beautifully pre-programmed rule to deal with them in a very fair way.  So you actually end up with kind of a back to basics underwriting where you’re – you do have to do some desk-based research, understand the condition and apply the decision.  Which actually can make these a lot more interesting and, dare I say it, fun to underwrite because you are back to that point where you have a bit more freedom.

Kathryn:       I mean I think it is – it’s like rare conditions is something that really interests me on the basis that obviously we speak to a lot of people that are classed as having a rare condition.  Now, I will obviously – and I’m sure that there’s plenty of people who know me and plenty of underwriters who are right now going to cover their ears when I say hypermobility syndrome.  So, I have hypermobility syndrome, okay?  I know that it’s a rare condition and quite frankly I know that because I was diagnosed when I was 12 and I was treated like this massive oddity.  I was – there was two key professors in the UK who did the – sort of like the diagnoses.  I was shipped between both of them in London and Leeds.  The person in London actually took photographs of me in my contorted positions for his medical students as, you know, as an example to teach them, which when you’re 12 makes you feel like a complete and utter freak obviously.

Andrew:       Yeah.

Kathryn:       When it comes to hypermobility, for the underwriters out there, I am a full nine out of nine on the Beighton score.  I went through my teenage years when the hormones were really bad – I have the bad side of hypermobility, in that there was one week when every single day for a week I was in A&E with a new injury and at one point I had my arms and my legs all out of commission and as a 14-year old, I have to say it wasn’t fun.  You know, and then all of a sudden you’re back to almost like a childlike life – very young childlike life and a parent having to look after you which is completely demoralising and it was rare.  And at that point, it was so rare.  I was originally diagnosed as having hyperextensibility syndrome because that was the terminology that was given which I – luckily my parents had private medical insurance.  We saw the medical notes where the doctors had accused my Mum of having Munchausen’s and different things like that.  And we went to this consultant who within a few minutes said exactly what I had, realised it actually had been passed on from my Mum through her Dad and we could go back through the line a bit as to find out where it is.

It then obviously changed quite quickly to then being more commonly called hypermobility syndrome and I don’t want to sort of make it seem as if I’m saying like everybody with hypermobility is absolutely hunky-dory healthy and all that, because I know that I’ve obviously not had – well when I was younger I didn’t have a good go of things and touch wood, for whatever reason, things have gotten better but not everyone does and some people who have actual Ehlers Danlos Syndrome do have potentially a lot more – say like the organ involvement.  Now, I’ve had lots of tests done so I had my heart checked which showed that there was no complication with what’s known as Marfan’s which is a similar kind of connective condition.  I also had dexa scans done just to make sure the bone density as to how everything was working on the inside and everything was showing up fine with that.  I was just going to be much more prone to injuries because everything is just a little bit more looser in me than it should be.

The thing that gets me – so with stuff like Ehlers Danlos Syndrome, now I get the fact that, you know, underwriters and everybody have to take into account what could potentially come and how conditions can progress.  So, you know, having hypermobility and Ehlers Danlos Syndrome I would now be classed by a GP or a diagnosis as having Ehlers Danlos type three.  So if went for an application and I said – someone said to me, ‘Have you been diagnosed with any of these?’  I could say, ‘Well I’ve been diagnosed with hypermobility syndrome.  Not been diagnosed with Ehlers Danlos type three because that’s not what I’ve actually been diagnosed with.’  But the ways that GPs are classifying it now, people are – from people that we’re seeing and if people are just walking into a GP surgery with bendy, you know, wrists, bendy elbows and they’re being told, ‘Oh, well you’ve got Ehlers Danlos syndrome type three, don’t worry, it’s not the one where there’s going to be any kind of things going on in the inside.  You don’t have the stretchy skin, but yeah, okay this is what you’ve got.’  So they then have on their medical records that they’ve got Ehlers Danlos Syndrome which immediately is a huge fag, especially when you’re looking at critical illness cover.

And this is sort of like a bit of advice that I want to give to advisers out there, is that if you do have someone come to you to say, ‘I’ve got hypermobility syndrome,’ the first thing to do then is to say to them, ‘Have you ever, ever heard the words or been told Ehlers Danlos Syndrome?’  Then also check, you know, ‘Have you been told Marfan’s – Stickler Syndrome?’  There’s a whole suite of different ones that are all connected and it’s so, so important because that completely changes what the indication will be and what the terms will be.  And it’s really – I have to say annoying and I get that from an insurance point of view and I fully get that from an underwriter’s point of view, you get the name of a condition and it is going to categorise in a sense that person and I get that.  But there’s just this kind of thing at the moment where things aren’t matching up right.  You’ve got GPs who are diagnosing Ehlers Danlos type three when they just mean hypermobility syndrome.  I mean, they may mean Ehlers Danlos type three but then what Ehlers Danlos type three means needs to be changed in how it’s seen by insurers.  Do you see what I mean?  How there’s just – it’s not really adding up right now because people can just have hyperextendable joints without all the inside bits going on as well.  Does that make sense?

Andrew:       Yeah.  I guess the first thing to acknowledge is that having promised we won’t do much technical jargon, I’m delighted that you’re the first person to have trashed that absolutely with about 17 different medical terms in two sentences where –

Kathryn:       I’m sorry!

Andrew:       I thought it would be me, so well done and that gives me free rein now.

Kathryn:       I’m sorry everyone, I’m sorry.

Andrew:       But no I totally –

Kathryn:       I’ve got a passion about this.

Andrew:       Yeah, and it is that level of detail that makes the difference and it – and as you say, it’s trying to – I guess as an underwriter who – the first time you see a case is probably by the time it’s – someone’s entered details on an application form.  I think a lot of those conversations that go on between you and a client aren’t lost – aren’t understood by the underwriter or potentially actually nowadays, the first time an underwriter sees it is when they get that GP report in and they’re trying to go, ‘Well who do I believe here because I’ve got a client and an adviser who have said this and the GP that’s said that.’  And you’re left going, ‘Well which, you know, which is it?’  And let’s be honest, the assumption – the starting assumption is that what the doctor is saying is going to be more credible than what the individual’s saying.

Kathryn:       Yeah.

Andrew:       And I think the situations you described there are where, for any underwriters listening, almost that – well is that always the case and when might it not be true?  You know, there’s obviously – there’s, you know, there’s some obvious situations where it won’t be true where literally it’s the wrong person’s medical records or something like that but these subtleties do come out more for rarer diseases – for rarer conditions.  They come out more with emerging conditions and where definitions are changing because, you know, if the general theme of this – from my side, is often underwriters are humans too, so are doctors, so are GPs and it’s easy to sit there when it’s happening to you and your family and criticised the hell out of GPs for not being on top of things –

Kathryn:       Yeah.

Andrew:       But as back to the nature of this whole broader rare diseases symptoms thing, the fact is for that GP, they spend half their day looking at people with colds, flus, vaccinations and then sort of once every two weeks someone different walks in and probably once every three months someone walks in with, you know, some of these things, none of which excuses it and all of which is also we need to do something that works for these.  I guess my overall thing and back right to the top where – to your mental health piece, is a lot is about listening and listening to the symptoms and checking do they match that diagnosis and really understanding that becomes the core skill I think for an underwriter and insurer who wants to do well at this, who wants to actually make the right decisions on these cases.

Kathryn:       I speak to underwriters obviously and they are human and I think that the big thing as well is the fact that a lot of these decisions can be subjective at times, especially when we’re going into the rare conditions which can be hard, you know, you can sometimes ring an insurer, you can speak to one underwriter and get a completely different indication if you speak to someone else.  And that can be really hard for obviously managing a client’s expectations but I mean, just some examples of rare diseases or rare conditions, sorry, I really don’t like saying diseases – rare conditions that we’ve come across.  You know, some big examples there’s like Cowden syndrome, there’s Smith Louis Opitz syndrome, mitochondrial disease, there’s one that I have no idea how to pronounce, Alan’s been helping them – it’s HLH, it’s – I’m going to try it, Hemophagocytic lymphohistiocytosis, okay.  And that’s it – and it’s difficult because as well, I’ve been told, now I don’t know if this is right or not, I feel like I need to sort of like lower my voice as if this potentially an utter, utter secret but I’ve been basically much told that reinsurers are up for anything.  They will look at these things and they’ll go, ‘You know what, I’ll give that a crack.  I’ll give it a good go, see if I can offer that insurance.’  But then the issue’s with what the insurers are also happy to have a go at.  So I mean, kind of is that the right kind of way of looking?  Is that right that reinsurers are pretty much, ‘Bring it to us, we’ll see what we can do?’ or is that kind of, no that’s not right what I’ve heard?

Andrew:       I think it’s probably a reinsurer – it’s a reinsurer’s view but there’s definitely some truth in it at the moment and I – yeah, I think to understand why that might be – so back to reinsurers and insurers, they end up paying let’s say 90% of the claims, they take most of the premium.

Kathryn:       Yeah.

Andrew:       A slightly odd thing through that is the insurer has to pay for all of the medical evidence and obviously the time that it takes their underwriters to make a decision on the case.  So it’s not – generally it’s not the adviser or the customer who’s paying for that medical evidence.  It’s not the reinsurer, it’s the insurer.  So that’s what drives, I guess, that more sceptical – trying to find a positive word – that extra factor in that insurer’s decision is, ‘If I’m going to spend £100 getting a GP report and it's going to take someone an hour to read it and make a fair decision on it, then do I – how likely is it that even if I can offer terms, if I can offer a fair premium having read that, that that person is then likely to take up the case?’  And they, you know, will have done research and they’ll have used – they’ll have tried – at least they should have, tried and on times they’ll go, ‘Well we’ve done this ten times.  Each time it comes up either with a decline or with a very highly increased premium and then none of them continue.’

Kathryn:       Yeah.

Andrew:       So that can be what’s going on and I think that’s where I would have sympathy for the insurers.  That said, I think there are also other situations where insurers do just look at it and frankly it goes, you know, risks going into the, ‘Well this is just too hard and it doesn’t fit in our nice smooth funnels and so we’d have to charge everyone a bit more,’ to do some of those things I’ve talked about.  And I think this is, you know, bluntly this is kind of bigger stuff, this is – some of it’s quite philosophical and –

Kathryn:       Yeah.

Andrew:       And some of it’s down to earth, practical but clearly the less time you spend doing that, potentially the cheaper premiums you can give to people who don’t have rare conditions.

Kathryn:       I get that, because at the end of the day it’s a business as well.  You’ve got to be profitable.  You’ve got to make sense but it just – I think sometimes – I mean I’ve had completely different – I’ve got a couple of examples which were just completely different to me which I think are a good example of this.  So I had somebody come to use who had Cowden Syndrome and very, very rare condition.  Everyone but one insurer was just, you know, they just weren’t even prepared to discuss it.  But one insurer actually turned around and said, ‘Look, we’ve got no guidance on this.  Obviously this is so rare, it’s not even in our manuals.  Tell us what it is, tell us how it affects them and let’s see.’  And that just absolutely blew me away because it was just so nice to actually have, you know, that thing where the insurer’s gone, ‘You know what, just actually let us see what we can do. We are prepared to give this a go.  You know, let’s look at the actual symptoms of the condition, not the condition itself because we have no idea.  Let’s put our hands up and admit we have no idea about this one.  Let’s just see how it affects their ability to work.’  Which it didn’t, which was brilliant.

But then there’s another example.  I had somebody with mitochondrial disease.  Now this person had it to – it is a genetic condition so I understand – and I do understand looking at the condition if you do any Google searches on it, why insurers, underwriters would be – from an initial point of view, quite cautious.  Now this person had it extremely mildly.  Now, the thing with this one that kind of got me is that nobody would consider it and from an adviser’s point of view and from somebody who isn’t inside the insurance side of things, the reason that I found that quite interesting in a sense and sort of like a little bit confusing was that this person had just been told that she was going to be able to go through IVF treatment.  The reason they were doing the IVF was to in a sense strip out any of the condition so it wasn’t passed on.  So to me it was a case of, ‘Hang on, so here’s this person who has this condition, basically it isn’t, you know, in a sense massively symptomatic and yet, you know, and the doctors are saying that she is healthy enough to go through the process of creating a human for nine months, going through labour, all of that kind of stuff.  They’re saying she’s healthy enough to do that but yet she’s not healthy enough to get – even be looked at – considered for life insurance with sort of like the standard insurers?’  I found that quite surprising.  So I don’t know – what would be – in a sense, what can advisers do in that kind of a situation?

Andrew:       Yeah, so I guess to pull the two together – so I think this variety and different approaches will often come where you’re either hitting conditions that just haven’t been considered at all in that insurer’s philosophy or that reinsurer’s philosophy, or more frequently they will be there but they’ll just have either something that says CMOs – so refer to chief medical officer or IC which is even more half-hearted, which is individual consideration.  Which sounds great and kind of exactly what you would want it to say but basically means, ‘We haven’t had the time to think about this at this point so come back if there’s a real situation here.’  And the reality then is – I guess frankly, how often, how hard are people going to work for those?  Because especially the IC – the individual consideration is as likely to end up being standard rates as it is to being a decline.  There’s kind of – it is just a, ‘We don’t have enough research or data to do something on this.’

So then to take that second example and I think this is a common theme and frustration right, is where there is real-life things that are going on that show that someone – I don’t know, in quotes, ‘Isn’t that bad or is doing well at the moment or is doing well.’  The starting technical point here is to say, life insurance is very, I guess, tightly priced and so in essence if you’re 35 and applying for a 25-year term, the assumption by the time you’ve gone through that insurance – that kind of insurance application form, is that you’ve got, let’s say a one to two percent of dying – two percent chance of dying if your standard rate is within that term so you’ve got, you know, one in a 100 or two in 100 chance of dying in the next 25 years.  When insurers, as they do, say, ‘Well the maximum we’re going to charge is about three or four times,’ and even that’s very, very rare as you would know, but to go up to three or four times then really that person has still, in the insurer’s view, if the insurer thinks that person has a 10 in 100 chance of dying, they will be declining them.

You know, that person potentially goes in and says, ‘It’s not that bad, you’ve got a nine in 10 chance of seeing it through to retirement.  You’ve probably got a –’  Then they come to insurance and where everything is this really tightly, tightly packed out place at the moment in the UK market – the emphasis changes.  So I think that’s why that can correctly happen I suppose and that’s not to say that there aren’t equally situations where people aren’t looking at that full picture.

Kathryn:       I think it would be good to make sure that sort of like what I see is the front line, is a normal application process is what you think would happen, Andrew.  So, what do you think a standard straight through application would happen and then what would happen for say somebody with a rare condition?

Andrew:       Before it gets to underwriting, I think it’s really important to recognise this; a conversation that’s gone on between you or someone in your office or an office like yours and that client.  So the first time an underwriter sees a case is when an application form is received in the office but I’m very aware from spending time in your offices and similar offices that, before that point quite a lot of contact has gone on.

Kathryn:       Yeah, I mean obviously we’re an adviser – broker.  The way that we are specifically set up is that we chat to a client and just like all or hopefully all advisers, we go through what’s getting to know your client, so we’ll get to know their personal circumstances, why they’re wanting the insurance and being able to sort of like help them know how much insurance they need.  So we’d then obviously chat through health and different things like occupation and travel and sports and stuff like that and I think for anybody who doesn’t have health conditions or anything that’s sort of like flagged as a risk, they would then go down what we would class as the normal application process.

We have to do a lot of presales research for each of our clients because it never happens – you can’t just turn around and go, ‘Well this person’s in their 30s, they’ve had stage 1c breast cancer and we need to do the research.  Ooh this person’s also in their 30s, stage 1c breast cancer.’  You can’t ever rely upon what you’ve done before.  You get a general feel as to which insurers are generally better for different risks compared to others and, you know, sometimes someone’ll ring up and they’ll say something and you’ll just so straight away – you’ll go, ‘Right, I know where you’re going to be going with insurer X, Y, Z, because they’re just not going to be right for you.’  You know, in your head, obviously you don’t say that out loud.  But – and you’ll be immediately thinking, ‘Right, you know, but ABC, they could be, you know, they could be a good one here but you still have to do obviously all the research.’

[0:30:09]

Andrew:       I think especially for these rarer ones, the underwriter kind of has to activate and engage that individual consideration and what to do.  So you go back to the – I guess back to underwriting day one and the most important decision ultimately is whether you want to offer terms to an individual, ultimately whether you want to insure an individual or not.  It’s fair to say that nowadays there is a, you know, there’s a lot of pressure not to get medical evidence unless you really need to for pretty obvious economic and efficiency reasons.  So partly you spend less money, also it’s more likely that someone’s going to take up the policy if you can make a decision in two days rather than two months.  The stories that – and the information that either should be being gathered by a good underwriting team asking the right questions and/or a good adviser performing some of that role for them, will vary dependent on the product but ultimately it’s predicting how likely the claim is.  So for life insurance it’s, ‘Are you going to die or not?’  For critical illness it’s, ‘Are you going to have a critical illness?’  The income protection I think is almost where there’s the most scope and where some of those stories and personal experiences really, really can and should make a difference.

Kathryn:       I think an interesting thing on that for me, especially – obviously as starting to look at, you know, we’re obviously wanting to talk about more protection and things and just so like I know we’ve mentioned life a few times so I’m going to put you on the spot again a bit.  So say like looking at hypermobility or Ehlers Danlos Syndrome, stuff like that – so the difficulty is – the biggest, biggest difficulty is critical illness cover.  Now, that gets to me because as far as I’m aware, there is no – nothing that would suggest that having Ehlers Danlos Syndrome would you make you at a higher risk of developing cancer, Parkinson’s disease – if, you know, Ehlers Danlos Syndrome itself doesn’t, you know, that in itself doesn’t mean that you’ve necessarily got a heart, you know, problem.  It doesn’t necessarily mean you’re going to have a stroke or anything like that.  So I don’t, I mean I’m not going to say that I’m a medical doctor so obviously I’m not – I am a doctor but not a medical doctor, but I don’t understand why it’s such this hard line no for people – generally for people.  I have managed to do it, it took a lot of involvement and research and debate we’ll say with an insurer.  The general rule of thumb is a no, but even if somebody with Ehlers Danlos Syndrome does have a bit of an issue with their digestive tract, even if they are incontinent, how does that make them – why does that make them an absolute no for these other policies?  And it’s just the fact that there’s not even a conversation at times, it’s just no.

Andrew:       The reason for a lack of conversation I guess is, if it’s going to be no it’s better that someone says no quickly rather than waste anyone’s time.  But – so why – should it be a no in the end or not?  I mean, I do think it depends on severity.  You’re right, there’s – the main issues are going to be digestive or potentially for variants of – there can be cardiac – an increased chance of cardiac events and –

Kathryn:       If we’ve ruled out Marfan’s – if we’ve moved on from Marfan’s because Marfan’s is the one that’s the heart side of things.  The Stickler syndrome is the one that has the involvement with the eyes so I’d understand if those were but they would be very, very specific diagnoses.  So a GP’s not – I don’t believe a GP is going to diagnose someone as Ehlers Danlos Syndrome and completely miss the significant physical traits that are associated with Marfan’s and Stickler syndrome and the other hyper­mobile conditions.  So, you know, if someone’s going with Ehlers Danlos Syndrome, if the doctor feels that there’s – especially the potential risk of them not having diagnosed Marfan’s and Stickler, they’re not obviously going to miss that so if the doctor’s not wanting them to go off and have any – if it’s just a case of, ‘You’ve got Ehlers Danlos Syndrome, go on about your life.’  You know, or even for a case of them saying, ‘Right well you actually – we’d need you to have a medical because we want one of our nurses to come and see you and make sure you don’t obviously have Marfan’s or Stickler syndrome.’  I mean, it just doesn’t seem like it’s right at the moment and I’m sure that there’s plenty of underwriters banging their head against their desks now and probably quietening me down until your voice comes back on.  But yeah, it seems – just it doesn’t add up to me.

Andrew:       As I say, there’s the bit around digestive issues and the difficulty there in either applying a broad enough exclusion to work for that or finding a fair increased premium to reflect the fact that there is an increased risk of conditions related to that, there isn’t the long-term research on long-term effects on that and that may be something – let’s be clear, you know, I can’t speak for all underwriters at this point but as you yourself described, the literature is all relatively new because –

Kathryn:       Yeah.

Andrew:       These conditions are still relatively new.  Now that doesn’t give anyone the right or excuse to just decline people for 25 years until you’ve got 25 years’ worth of evidence but I think it is where frankly anecdotes and other things can weigh more heavily.  So as you’ve rightly pulled me up there, the temptation is to keep things grouped in with things that they may have been grouped in with before and saying there’s still this risk that they are linked in some way.

Kathryn:       Yeah.

Andrew:       And I think that’s somewhere where, as underwriters or people who understand risk, we need to be quicker to say, ‘Well actually, this is different.  Just because it’s got the same overall heading, the prognosis can be very different.’  And I think that is a legacy thing and something to push at.  So what often happens within insurers, so let’s do the – let’s do that – so what often happens within insurers is there will be chief medical officers who are specialists in certain conditions and then others who are basically – who are GPs who can advise.  Within larger insurers certainly, there would often be individual underwriters who are tasked with specialist kind of knowledge and so I think with things like this that actually, you know, there will be probably a handful of people right, who really know about this in detail and in case it’s not already obvious, I am not one of them.  I am one of them who has gone to talks on this stuff and understands it well enough to make, you know, to potentially decide whether to put a big amount of a company’s savings at risk –

Kathryn:       Yeah.

Andrew:       Or not on an individual so I understand it or I should understand it well enough to do that but I think, again it just does come back to this thing of going, ‘You know, we need to listen and we need to understand.  We need to challenge, right?’  So if I was underwriting you this afternoon then I would be going to my safe data sources and going and looking those things up and da da-da da-da.  But –

Kathryn:       You would not want to underwrite me honestly.  My medical record’s 500 pages.  I actually got a thank you from the insurer who underwrote me – from the underwriter to say thanks, you know, ‘Thanks for sending that.’  And I was like, ‘Well I’m not taking risks, yeah.’

Andrew:       Yeah, but I think – I think it is that, you know, this rare conditions as a whole piece is absolutely – this is what it is about and it is where different – where very specific diagnoses are being made and I think that is a key thing for advisers to hold to account and to kind of emphasise, that as you say, you don’t make that – you don’t end up with that diagnosis without someone knowing what they’re doing.

Kathryn:       Yeah.

Andrew:       I think potentially a valid question for an underwriter to ask is, ‘Who diagnosed you with that?’

Kathryn:       Yes.

Andrew:       Because there are times where actually you suddenly see a spike in diagnosis and the main reason is because GPs are being incentivised to diagnose that condition, you know, and those kind of things.  If you’re told a professor has diagnosed you with this as opposed to that, that or that, then frankly then that needs to really drive –

Kathryn:       Yes.

Andrew:       A very different decision.

Kathryn:       Oh absolutely.  I think if a consultant’s been involved then you’re talking a completely different level of things, you know, level of evidence and everything which is brilliant which is why I think sometimes with the rare conditions and we get – we can get sometimes a bit frustrated about is, you know, sometimes it’s the case of like well, ‘Look, if you’ve been diagnosed with this rare condition –’ it’s either yes they’ve seen a consultant with a lot of medical evidence but if it’s just the GP that’s said it – and I’m not – I’m don’t mean that to seem like, ‘Just a GP –’

Andrew:       Yeah.

Kathryn:       But it’s just a case of if it is a rare condition and a GP has diagnosed it, then if it is really that condition then one, there should have been more tests and the person needs to know in a sense that they need to have more tests but it could well be that they’ve used the kind of terminology in a kind of sense – you know, sometimes a bit flippantly?  And I don’t mean to say that and I’m not criticising GPs at all, I know that may seem like I am doing that but I’m not doing it, it’s just that it’s what we’re seeing quite a lot of because we see a lot of errors in GP reports and there are times where we’re having to advise people to challenge – not necessarily – well sometimes a diagnosis from a GP but, you know, we’re getting it where GP reports are incorrect and we’re having to say to people, ‘Look, this – you know, basically what you’re telling us is one thing which is absolutely fine, we trust you, but your GP report is absolutely saying something different because they wouldn’t – the insurer wouldn’t make this decision based upon what you’ve told us.’  And then we find out that the person, you know, and it’s happened a lot – but they’re going back to the GP and they’re coming back to us saying, ‘You will never believe what my GP has done – I’m having to go – I’m having to raise complaints, I’m having to get my medical records corrected.  They’ve completely, you know, they’ve –’  Sometimes it’s the wrong people that are detailed in the report, sometimes for whatever reason the GP’s just completely misread the notes of whatever a previous consultant has said and has just kind of – kind of gone off on one.  And I’m not saying that happens all the time and I’m not saying it’s, you know, it’s certainly something that I think that every GP – I can’t imagine it’s any GP that’s doing deliberately or maliciously at all, but it is something that we’re seeing more and more of and I think that’s quite – from an advice point of view, I find that quite scary because I think of all the people that are applying for insurances that don’t have an adviser like ourselves behind them who can say to them, ‘Well you need to write it like this or you need to say it like this,’ and the thing is that some people could be going for insurance and not being able to get it because there’s something in error on their report.

And then there’s other times that people are getting insurance willy-nilly without actually understanding what their medical report says.  So when a report, you know, obviously, if a claim happens then they may actually be completely uninsured and not even realise it.  And I don’t know how to solve that because there’s no easy way to solve that but I just think we’re in a very confusing – potentially dangerous time and it’s just worrying sometimes just to see that and I honestly don’t know what the answers are.  If it’s okay with you, I would like to go through just a very quick case study then we’ve got our first listener’s question.

Andrew:       Yes.

Kathryn:       Which I’m quite excited about.  So the first case here, I just want to give this out there to advisers so I’m going to chat about somebody that came to us who had sickle cell anaemia.  So it is a rare condition but it is one that we see quite regularly.  So I just wanted to give an example for anybody out there who has come across something like this.  So we had somebody who had sickle cell anaemia, also had a silent heart murmur but they weren’t on any medication but they had within the last five years or so had a couple of what’s known as crises due to the sickle cell.  But bar that, they were very fit and healthy and they had been previously declined by two insurers before they spoke to us.

So I was – I did have someone mention to me and it’s worthwhile me doing this – explaining the rating just in case anybody hasn’t really come across that because obviously people don’t always have people that are rated.  So for this person, we got them a business life insurance and the premium was rated 150%.  Now it really confused me when it came to premium ratings and it took ages for me to get the hang of this and Alan always looks at me like I’m really, really silly for not really understanding it but just for whatever reason – I’m good at maths but for whatever reason, the ratings really, really get to me.  So if you’ve got 150% rating, you take the base premium and what you do is – so 150% would actually mean that you times that base premium by 2.5.

So we have our first listener’s question and I’m going to namedrop the insurer only because of the fact that the person is from an insurer.  So I do apologise, this isn’t any kind of endorsement or anything like that.  I know we’re not namedropping but it is – the question is from Phil Hull who works at Holloway Friendly and what he’s asked, Andrew, is if you take two people with identical medical conditions, one has been diagnosed, is being treated and doing what the doctor’s told them to do and the other is blissfully unaware that he has anything going on, then in a sense what happens and what is – how does that work insurance-wise because naturally the person who doesn’t know anything about what’s going on with their health just gets standard rates, goes on, there’s no issues and even in the event of a claim there’s no issues because nobody’s been aware that they’ve had this condition for all this time in a sense.  But then how is that then fair on the person who is being aware of maybe some kinds of signs in their body?  They’re being actively involved with their health and they’re doing everything that the GP has told them to do.

Andrew:       Yes, thank you.  Well now I get two people to have voodoo dolls of me – you and Phil, Kathryn.

Kathryn:       Come on Andrew, how is it fair?  Come on, answer the entire industry, go on!

Andrew:       It’s a good question.  So, I think that – and the bigger picture right is, assuming that this is, I guess, real conditions then in that first situation, that individual is getting the most appropriate care.  They’ll have an improved quality of life and/or life expectancy in the long run so I’d rather be the first person who’s been diagnosed early and has to pay a bit more for my insurance but has all of those good things happening.  And ultimately with any sort of insurance, there are winners and losers.  I guess the warning sign for me in these hypothetical questions that are sometimes asked is, to emphasise that the second person – if they’ve had symptoms of anything.  So if they’ve had numbness or pins and needles or chest pain or anything that’s been asked about, they do need to disclose that.  So it may be that those do, I guess, trip them up or potentially help them find the correct diagnosis for them by going through the application.  I guess the overall moral is you shouldn’t wait until you know something’s wrong to buy insurance so that second person who, you know, hasn’t been diagnosed yet, that’s the ideal time to buy insurance.  So rather than to wait until you know that something’s wrong or something’s been diagnosed.

Kathryn:       Okay.  I think we’re probably coming towards the end of the episode so obviously thank you very much for listening everybody so we’re going on to our next truth or lie feature.  So you need to figure out again which one of us is telling the truth and which one of us is telling a lie.  I have to say, I really can’t wait until we start getting guests on the episodes, having a bit of a three-way going on there.  So Andrew, do you want to go first this time?

Andrew:       Yes, sure.  So, having been true last time I can do my true voice again.  I am a bit of a night owl and I’ve not been to sleep before midnight for four years.

Kathryn:       Just think that’s the same for any parent to be honest.

Andrew:       Yeah!  So I have a seven-year old and a five-year old so it’s pretty stat.  The impact of that has changed me forever.  How about you?  What’s your –?

Kathryn:       What’s my thing?

Andrew:       Yeah, after my statement.

Kathryn:       So – ooh, okay then right so I’ll put on clearly my best lying voice like you say so everyone can know – but my family say that I am a classic case of being quite smart but little common sense.  So I will embarrassingly admit that I cannot work push-pull doors.  Yeah, leave that for everybody.  So I just want to say thank you everybody for listening.  We hope you’ve found this all useful.  If you have any questions or you want to discuss anything or if you want to disagree with Andrew, please do send us a message.  More than happy for you to do that.

Andrew:       Yeah, thank you for that.  We’ll be back in two weeks.  So if you’d like a reminder of the next episode when we’ll be chatting about smoking and e-cigarettes and vaping and all those kind of good things, then drop us a message on social media or visit our new website.  So our website is, or will be, www.practical-protection.co.uk.  Thank you very much for listening and take care.

Kathryn:       Take care everybody.  Bye!

Andrew:       Bye.

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