Join us as we revisit some past guests to discuss new topics! Trishna Bharadia and Anisha Gangotra are sisters – both thriving with their own chronic invisible illnesses. Trishna lives with MS (multiple sclerosis) and works tirelessly as a patient advocate; Anisha lives with UC (ulcerative colitis) and has also survived PTSD (post-traumatic stress disorder). Anisha was inspired by her own journey to begin teaching inclusive dance classes – which Trishna frequently attends! The two are a wealth of information and experience, and are incredibly close…chronic illness seems to have brought them closer, rather than pushing them apart. In this episode, Lauren sits down with them to get more into the nitty gritty of their healthcare experiences – including their take on the NHS.
Key links mentioned in this episode:
Listen in as Trishna & Anisha share…
- that Trishna was diagnosed with MS before Anisha was diagnosed with UC – in 2008
- that they live with their parents, and there have absolutely been growing pains as they’ve both endured symptoms and diagnoses
- that they understand each other so much more now that they’ve both received chronic illness diagnoses – and that ultimately, these conditions have made them closer
- that they expected to be taking care of their parents by now – but that their reality is, in fact, the opposite
- that the try to socialize more locally now, and with friends who understand what’s going on with them
- understanding the cost of medical care within the NHS
- that certain communities restrict or stigmatize access to medical care
- the difficulties of NHS branches being disconnected by region
- the advantages and disadvantages of nationalized healthcare – within the NHS as we currently know it
- their thoughts on the future of healthcare in the UK
- the levels of responsibility that fall upon patients within a nationalized healthcare system
- that we all become patients at some point – and so we all need to get involved in understanding and advocating for the best healthcare possible
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Lauren: Okay, guys, you will remember today’s guests from some previous episodes. They are a sister disability and advocacy awareness duo. We’re with Trishna and Anisha, who have been on the show before. So ladies, thank you so much for joining us again!
Trishna and Anisha: Thank you for having us again!
Lauren: It’s great to have you on, because we wanted to really dig into a couple of topics that we didn’t get a chance to talk as much about in our previous interviews. So we thought it would be a good excuse to have you guys on together as well, as advocates and sisters, really going through so much of what you go through together. So why don’t we start at the top. Which of you was first diagnosed? And have your diagnoses and the disabilities made an impact on your personal relationship between the two of you?
Trishna: I was diagnosed first. My symptoms started around 2004, but obviously, I didn’t really know that it was MS then. What sent me towards the MS diagnosis/relapse was in 2007. And then I received my diagnosis in 2008. But 2008 was when Anisha actually started to develop the symptoms of what she would be diagnosed with — ulcerative colitis. At the time when I was being diagnosed, Anisha was already experiencing symptoms of her ulcerative colitis. So it started to really happen around the same time.
Anisha: Yeah, there was a bit of a crossover. I started to experience my symptoms of ulcerative colitis, I think it was February of 2008. Your diagnosis was May 2008.
Lauren: Wow. You really just dovetailed.
Anisha: Yeah. We’d had sort of that build-up with Trishna saying, “What’s going on? What does it really mean? What is this new life with these odd symptoms happening?” And then suddenly with me and some of my symptoms. I wouldn’t say there was necessarily a definitive way of diagnosis. For me, there were lots of different terms being bandied about, and we kind of just went along with it really.
‘Okay, this is what life has thrown at us. How do we navigate this now?’
Trishna: Sometimes we joke that I wasn’t giving my parents a hard enough time! (laughs)
Lauren: (laughs). Yeah, they need a little extra!
Trishna: Then Anisha would join the club. And then three years later, my identical twin sister was diagnosed.
Lauren: Also with MS, correct?
Trishna: Also with MS. Yeah, it was very much … they say that things come in threes, don’t they!
Lauren: Yeah, they really do. And you guys are living proof.
Lauren: So, what’s the impact that all of these diagnoses have had on your relationship? Has it made you closer, because you sort of get it with each other now?
Trishna: Yeah, it has in certain ways. In other ways, I think it’s made things more difficult, just because it’s hard when you’re both going through symptoms. Just to clarify things for the listeners … myself and Anisha, we live with our parents. A twin sister, Manisha, she doesn’t live at home; she lives away from home. And yeah, it can be hard when … for example, everyone has done a full day of work … I’m extremely fatigued and having bladder issues … Anisha is in the middle of a flare and having bowel issues and is also fatigued … but the laundry still needs to be done, dinner still needs to be made. All those things. I think the frustration, sometimes, can make it difficult. You get to a point where … it’s one of those things as they often say …
… the people closest to you, you show them the most love, but also, they’re the ones you take it out on if you’re angry or frustrated, or if you’re tired. They see the good, the bad and the ugly.
Anisha: And I think it has changed how we’ve had to do things as well. So when Trishna first had her diagnosis, and also actually in the lead-up to her symptoms … we were playing hockey; we’ve always played hockey …
Trishna: Field hockey.
Lauren: Not ice hockey!
Anisha: No, real hockey! We don’t have so much padding! So we’ve always played, and actually over that period, we were playing for the same team. We were playing for a hockey club, which was a minimum 45-minute drive away for a home game. So when Trishna was experiencing a lot of her symptoms before her diagnosis, I was doing a lot of the driving. I would drive there, I would drive back, and if we wanted to go for night out. We love dancing. Again, I would do a lot of the legwork, because with Trishna’s symptoms … whatever she was feeling, whether it was fatigue, or she lost sensation down one side of her body … I was able to pick that up and we could still do things together. As my symptoms have changed, as my health has changed, so has that — because now, for example, I need someone to be able to do some of the driving for me. When I’m fatigued, I need the help.
So I think also, not just between us as sisters but as a family unit, the dynamic has changed. It has given us an opportunity, I think, to become closer.
I think there is a lot more understanding around our conditions, our symptoms. But as Trishna said, also the frustrations do come out — when we’re all tired, when we don’t feel well, when we’re banging on the door going, “I need the bathroom, I need you to get out!” You know, those sorts of things. Tempers can fly and the frustration does come out. And also to emphasize here, both our parents are in their ‘70s now; it’s at the time of life when we thought that we would be looking after them. And increasingly over the years, we’ve ended up having to rely more on them. That’s also had a knock-on effect in terms of, socially, what we’ve been able to do. Because when I was first diagnosed, like Anisha said, she was picking up a lot of the things that I was having to step away from. So like driving into London, when we were organizing nights out, I used to do a lot of the organizing — and then I couldn’t manage it, so Anisha would do that. And she’s not able to manage as much either. In many ways, I think we have become quite socially isolated. The things that we’d always loved to do …
Anisha: We still love going out and dancing, but we can’t now stay out till three o’clock in the morning. I remember one of the best nights out I had … I’d gone into London, gone to a salsa club with some friends. I’d picked them up on the way, driven into London. We’d danced the night away. We thought we’d leave around midnight, 1am, but we were having so much fun we decided to stay until three o’clock when the club closed. By the time you’d toddled off to your car and I’d dropped my friends home and then got home, had a shower, it was easy five o’clock by the time I got into bed. If we go out with friends now, by 11 o’clock we’re kind of done and ready and we’re needing our rest. We’ve had to adjust and try to do things more locally. And also with friends who understand. I think that’s been really important.
We’ve really seen who has understood and taken the time to understand our condition and how it affects us.
Also, made the effort. In the past, some friends have said, “Oh, come into London!” And we’d be, like,”Okay, yes, great!” And now that we can’t do that and we say, “Well, why don’t you come out to us?” They’re, like, “Oh, but it’s so far and you live in the countryside.” And it’s, like, yeah, but it’s the same distance we were traveling. So I think we have become a lot more reliant on our close friends and also on our family unit, because when we need to pull together, we pull together; we find a way to make it work however, that may be.
Trishna: I remember, there was a friend of mine and he’s in a pretty well-known bhangra band. He’s actually from up north, and he was coming down to London; they were playing a gig. I remember I said to Anisha, “Look, it’s going to be a reasonable time.” It was early evening, it wasn’t going to be too late. And it was on a bank holiday weekend. I said, “Look, we can share the driving. Should we go?” And Anisha said, “Yeah, that would be great.” On the day, she wasn’t feeling well enough. And I really wanted to go to this gig; what do I do? I ended up taking my dad with me! I was there and I was thinking, gosh, how times have changed. I’m having to take my dad to something. Don’t get me wrong, he thoroughly enjoyed it.
Lauren: Of course, yeah. He’s probably having a social life now that he hasn’t had for years! (laughs)
Trishna: Exactly! But it was one of those things where, you know, it’s something that you would normally do with your peers. And in order for me to do it, I have to take one of my parents. Also with social media, people don’t necessarily understand that, actually, our parents have become a huge support for us. And in order to make certain things possible, one of them is almost always with us. You don’t necessarily see that on social media. For example, Anisha is a licensed Zumba and inclusive dance instructor, so they might see her post and say, “Oh, well, she’s doing really well because she’s doing Zumba, she’s teaching these classes.” But they don’t necessarily see what she’s like before she gets there, where she might be half-an-hour in the toilet …
Anisha: I was actually thinking about that earlier. Because I posted some stories on my Instagram earlier, just before the class and after the class, having a bit of fun, you know, some nice photos. Well, as nice as they come! And actually today, I hadn’t been feeling great.
But it’s part of your job that you put a smile on your face and you bring that joy to others — because we don’t know what they’re going through.
And that’s my job, in that role. But actually, I was thinking, you guys don’t know I was up during the night, in the bathroom with severe stomach cramps, and everything else that went with it. You don’t know that, actually this morning, I went to the bathroom three times within 10 minutes to make sure that I’d gone before I left so that I wouldn’t have to run out in the middle of class. Or, that for example, after coming home and then speaking to you, I went and had a nap for an hour-and-a-half. Because I would not have been able to put even two sentences together. Obviously, a lot of people don’t see what goes on behind-the-scenes. And I think that’s one of the challenges … how do you explain to people if they don’t actually see it? Without posting pictures of you asleep, having a nap … I draw the line at that!
Lauren: We’re going to dig into some some pretty hot topics here and we might as well jump in … have you guys experienced the struggle to be seen within the medical system over there … the NHS that you’re part of … have you experienced that struggle to be seen? Have you found that being women, and being women of color … has that had an impact on people’s receptiveness to, or doctors’ receptiveness to, the fact that you guys have these invisible disabilities?
Trishna: Yeah. There are probably two strands there. Firstly, obviously the struggle to be seen, to be taken seriously, in a way, within the healthcare system in the UK, which is our NHS — which we wouldn’t do without. When it works, it works so well. I’m very much a believer in the system. However, the way that it’s working and operating at the moment, it’s a broken system.
Anisha: There are a lot of pressures.
For anyone that doesn’t know, although the National Health Service, the NHS, is free at the point of access, the way it’s funded is actually through our taxes.
We pay our taxes, and a proportion of that then goes to funding the NHS. So actually at the point of access, it is free. But you are still funding it, through your taxes.
Trishna: There’s still certain things which aren’t free. For example, certain prescription medications you still have to pay for unless you’re exempt. There’s lots of criteria to make you exempt. But for example, just having MS doesn’t make me exempt. The exemptions are things like … if you’re unemployed, if you’re uncertain benefits, you’re over 65.
Anisha: If you’re pregnant, and I think you have cancer, then medications are free for you.
Lauren: It’s so interesting to me, the cancer thing … because you talk to so many different people in the chronic illness world, and I’ve interviewed a friend of mine who has cancer, who has survived it a couple of times, and her perspective is that cancer is a chronic illness. Just like so many of these other chronic illnesses. Which makes a lot of sense to me. But it’s really interesting that there’s so much more funding and so much more research behind something like cancer — and not as much behind things like ulcerative colitis and MS and all of these other invisible illnesses. So already there’s this disparity, in terms of the fact that you have to pay for certain medications and someone with cancer doesn’t. But it doesn’t make what you’re going through any less important.
Trishna: I have to emphasize here … what you pay is heavily subsidized. So a prescription charge is now 9 pounds [sterling] per item.
Lauren: It’s still so reasonable!
Anisha: And this is where it’s interesting, because if it’s on prescription, you would pay for it. So you can pay 9 pounds [sterling] per item. Or you can essentially buy a prepayment certificate, which is an amount for a year; I think it’s 104 pounds [sterling] for the year, and you can get as many prescriptions as you need. So you can work out what’s likely to be most cost-effective. A lot of the first- and second-line medications for ulcerative colitis are all prescription medications that I’ve had to trial and see if it works, and I’ve had to either pay 104 pounds [sterling] for the year. Or, you pay per item — and then you don’t really know if it’s going to work or not. Once you hit, for example, the third-line treatment, which is the biologics …it’s not prescription, it’s administered in hospital. So, actually, you’re not paying anything. Even within the the IBD (inflammatory bowel disease community, of which Crohn’s and colitis are the two main ones), you can get some people who may be on prescription medication for the rest of their life … and that works, and they have to pay every year for it. Or, you can have someone who is on another treatment which is administered in the hospital … or you may have injections which you can do at home … which you are not paying anything for.
Lauren: But it’s a disparity and it makes no sense that some should have to pay. Have you found that the way you present as female and as women of color has had an impact on your access to these treatments? And whether or not you’ve experienced pushback from doctors?
Anisha: No. I think it’s difficult to say sometimes why people might push back. For the first two years, from 2008 to 2010, I was seen within a local hospital. They did not have a specialist IBD unit. I was seen by a general gastroenterologist. To be honest, my health declined so much during that time. I didn’t really understand what was going on; lots of terms were being bandied about. And actually, they wanted to discharge me because they were, like, “Well, we don’t think there’s anything wrong. You seem fine now. Let’s just discharge you.”
You start to almost question your own sanity … am I making this up? I’m not sure quite why that happened.
Lauren: It sounds like certainly a lack of expertise from the medical consultants there was part of that.
Anisha: Yeah, I think so. Now I actually travel about 80 miles round trip to see my current specialist.
Lauren: The two of you both travel that far to see your specialists now.
Anisha: Yes. And I remember the first appointment I had with my gastroenterologist. I explained what was going on. She listened and she explained things and she talked me through things. And I burst into tears. “It’s like the first time I actually feel like I’m being heard here.” I’ve been seeing her now since 2010. And over the years, we’ve managed to find our own way of working together. My hospital is in an area where you have a high Asian population. It would be classed as a working class population as well. The medical practitioners are dealing with lots of different people.
Trishna: And also, little pockets are quite orthodox. Which in itself can bring its own challenges. Particularly if you’re dealing with some of the more orthodox views. For example, that a woman shouldn’t be seeing a doctor on her own. Or not seeing a male doctor, for example, and things like that. Those are challenges. We come from a very open-minded …
Lauren: Progressive family.
Trishna: In terms of being Asian and having chronic illness, just generally … that, from the community, can bring its own challenges. A lack of understanding, a lack of knowledge about what the various conditions are.
Anisha: I’ve come across people who’ve never heard of ulcerative colitis.
Lauren: That’s not just that’s not just an Asian problem. It’s really interesting, because this is an emerging area of knowledge for a lot of people. But the idea here being that people who have perhaps isolated themselves culturally, or come from a more orthodox background, as you’re saying, might be even less open to these ideas — because they just haven’t seen the proof. And they just don’t understand it. It’s different.
Anisha: And I think some of it also then comes down to how confident do you feel in navigating the system. I have had instances where, for example, I’ve gone to see my general practitioner. I remember I wasn’t able to see my regular doctor, and I went to see whichever doctor I could in the practice. I’d been getting some issues with my joints, which can potentially be linked to having ulcerative colitis because it’s an inflammatory condition. And because all my care for ulcerative colitis is at this particular hospital in London, I explained that I wanted to be referred there to have it investigated — because they would have all my medical files, they would know exactly what medication I’ve tried, has worked, hasn’t worked, what side-effects I’ve had, what I’m currently on … if anything was to go wrong.
Trishna: Just to jump in here … for people who don’t know, the NHS is quite disjointed geographically. The NHS is split into geographical areas. And the different areas don’t have the same systems.
Lauren: Well, that’s a bit ridiculous, isn’t it? That’s a huge problem.
Anisha: You can’t share records. So, for example, if I was to have a blood test done at my GP’s surgery, my neurologist in London cannot access the results of that blood test.
Lauren: So it actually is a roadblock to your health in that sense. That’s a problem.
Anisha: There’s also agreements within the area. So between GP practices, and hospitals and the cost of referrals, they have agreements in place. So to actually be referred out of area also costs more. I remember sitting in that appointment, and the doctor — who knew nothing about my background because it wasn’t my regular doctor, and you get 10 minutes for an appointment …
Lauren: This is sounding very much like the American system!
Anisha: The doctor turned around and said, “Well, I don’t understand. Why is your care over there? Why do you want to be referred there?”
Lauren: Oh my God, to begin to explain that in 10 minutes!
Anisha: I was already feeling unwell as it was. And I had to sit there and explain and justify. And I remember walking out of there, just feeling really awful. And actually, in many ways, very disempowered because I actually felt like I was having to justify. I remember coming home and saying, “Well, if that’s how I felt when I can actually advocate for myself. What about those people that can’t? What about those people who do struggle, or who are more vulnerable?” That is sometimes one of the concerns that I have for myself. But for Trishna, she had a relapse and was struggling to advocate. Well, who’s going to be around to advocate for us? I feel that that is really important; we need to have that. But we shouldn’t have a system that does need that. It should be equal for all.
Lauren: Well, you shouldn’t have any doctors looking at you and saying, “I don’t understand.” That should be the first thing. To hear that from a medical professional has got to be pretty shocking. And it sounds like the system’s working against you in that way. Even though, as you say, the NHS works in such beautiful ways, it also is working against patients.
Trishna: And I think anybody who has any kind of experience with the NHS — whether as a patient, or as somebody who works in the NHS — I think everybody would probably say there are some very, very good bits, and when it works, it works really, really well. But also there is lots where … it just doesn’t work.
Anisha: A classic thing is, what we said about medical records. When I’ve been on some of the medication — immunosuppressant medication, suppressing my immune system — I’ve needed a blood test. To travel 80 miles just for a blood test is really difficult. The hospital sends information to your family doctor … this is what you can do, this is how to monitor. But again, things were actually getting missed and I developed leukopenia, which is when your white blood cells drop too low for the level that they feel is okay. You’re more likely to catch bugs and viruses anyway, but you need a certain level of resistance. And one of the doctors completely missed it, the family doctor. I was going for the blood tests, phone them up for the results, ask them to print the results, leave a copy for me. I was then scanning all my results, sending it to my nurse, who would then send it on to my consultant. And I was having to do that every two weeks, so I was essentially the middleman in my care.
Lauren: That’s a problem. To be quite honest, though, it’s quite the same here. Because doctors’ offices aren’t going to share information even if they’re next door to each other. It sounds like the actual problems, fundamentally with your system and with ours, are the same, right? There’s this lack of smooth communication between practices, whether that’s geographical or otherwise. Certain people are having to pay for things that other people aren’t. And it’s kind of arbitrary at the end of the day, because nobody should have to pay for that if anyone’s paying for it. And this is a system that you guys are paying into with your taxes. Over here, we’re paying into it with monthly fees. It’s six of one really. And no matter what, what I’m hearing is that ultimately the sicker you are, the harder it is to get care. Which is a problem. Or continuity of care, at least.
Trishna: I think it depends on which condition. We’ve had experiences with members of family or people that we know … depending on what their condition is, they have been seen straight away, treated straight away.
Lauren: Cancer is one of them. Nothing against cancer, you know, but that is one of the ones that gets treated.
Trishna: If you go to your family doctor presenting symptoms of cancer, you’re fast tracked. You have to be seen by a consultant within two weeks and have the investigations done. There is this movement which is trying to advocate for a similar system with neurology, certain neurological symptoms.
Lauren: That could be linked to another degenerative disease that could degenerate quickly, yeah. It’s the speed at which these diseases degenerate.
Trishna: So they’re saying … the time span is, I think, a certain number of weeks … if you’re presenting neurological symptoms within a certain number of weeks, you should have been seen by a neurologist, had certain tests done, and basically have got some kind of either diagnosis or some referral or solution, or something. So, I mean, there is a push for that to happen. Whether it will or how long it might take to happen is another question.
Anisha: And I think that with all these things, a lot of it is around staffing levels, funding. There’s only so much the system can cope with. People are working so hard in the system, and yes, there are targets.
But at the end of the day, these people are human, and there’s only so much they can do within the infrastructure.
And I think what’s happened is, obviously over the years, there has been a growth in population, there’s an increase in invisible illnesses.
Lauren: Well, it’s not that there’s an increase, it’s just that people are understanding them more, isn’t it? Ultimately, it also sounds like … like the American system, we’re dealing with a sick care system here. If you’re acutely ill, you’re going to get seen right away. But if we’re not tackling preventive care, then people are just going to keep getting sicker. And that’s going to tax the system.
Trishna: Yeah. And also in the UK, we have an aging population as well. At the moment, the big thing in the UK is, there’s a huge push towards dementia care and and Alzheimer’s research. And looking at how can we, as a country, as a society, provide the care that’s going to be needed. Because more and more people are living for longer, so they are more likely to need care because they’re then going to develop dementia. And also all the other different things that come with having an aging population. Just generally, an aging population is going to place a bigger burden on the health care system. Which is obviously coming at a time when we’ve had population growth, and we know that the system was already under pressure. It is very difficult.
Having said that, and to be perfectly honest, I wouldn’t have been able to afford any of my MS medications if I’d had to pay for them.
So my MS medications were being funded because they were being prescribed by the hospital. So you don’t have to pay for them. But you’re talking about the kind of figures where you have to, you know, take out a mortgage.
Anisha: I spent some time traveling in Chile some years ago, and spent some time with people who have multiple sclerosis, but also Crohn’s and colitis. And someone who I met there … she’s had Crohn’s for many, many years … And for one of the medications, which you can get here on the NHS through the hospital and will be free to access, she actually had to work out a payment plan with her mother, her ex-husband and herself in order to fund this medication — of which there was no guarantee it was actually going to work for her. And I often see in the online groups, particularly people who are in America saying, “My insurance has refused to fund this medication.” Or, “They’ve refused to fund it, moving from a 12-weekly injection to an 8-weekly injection.” Or, “I need some steroids because I’m having a flare-up. It’s going to cost me however many dollars and I don’t get paid until the end of the month.” I mean, between food and medication …
Lauren: Is this something where you guys, also as patients in the system … especially because you’re working in the advocacy space too, so you understand the ins and outs of it so much more, and you’re talking to the change makers and you are the change makers … Does it tax you emotionally to be worrying about your status as patients? Do you ever have moments where you’re, like, will I have care in a year, if the system is so disjointed?
Trishna: I think, for me personally, my concern isn’t the immediate; it’s the longer term. I don’t think I’m going to have a state pension; I don’t know there is going to be social care available. And I don’t think there is going to be a benefit system which is going to be able to sustain a decent standard of living.
Lauren: And you work full-time. It’s not like you’re not contributing to society. You both work very hard. So it’s really interesting that you’re worried about your future, even though you have stable full-time jobs. It’s unbelievable that you have to worry about things like that. And then what that stress is going to do to your bodies.
Anisha: Well, that’s was one of the really interesting things because in 2008, when I was experiencing my symptoms, and obviously Trishna had her diagnosis, I was going through things with my work. I was made redundant from one job. I started another job. It was great, but obviously there’s a lot of pressure around starting a new job. And Trishna was getting little side-effects from her medication, so we were looking after her — and you’re still going to work the next day. For me during that period in 2008, my thinking started to change. Because I was, like, okay, now we know what we’re dealing with. We know what these symptoms mean; we’ve got a diagnosis. So we need to start preparing for the future. Because if, for any reason, Trisha, for example, does need care or if we need adaptations to the home … not just now, but actually in 20, 30, 40 years’ time, for example, when our parents aren’t here … suddenly, I was, like, okay, that’s going to be a responsibility that potentially falls to me. I’m well, I’m okay. I didn’t really know what was going on with my own symptoms at the time, and suddenly my focus from my career changed. To be honest, I wasn’t taking great care of myself. Because, it’s also that thing of, well, when you need to do what you need to do, you just get on and do it. The important things.
Lauren: Yeah, you push through. Especially women! We’re especially good at that!
Anisha: And our focus was trying to help Trishna through this time. Medication is supposed to help. Yes, great. But there are also a lot of side-effects that can come with it. And then actually, as time has gone on, and with everything that I’ve been through with my physical health and my mental health, I’ve thought, I don’t think this is going to work.
I’m concerned about how I’m going to even take care of myself, without having to actually take care of someone else as well.
And I actually share a lot of the similar concerns to Trishna, for my own care. But then, also, what if it’s both of us, then what? How are we going to cope then?
Lauren: At least at this stage, you have each other for emotional support. Do you think the NHS has grown to meet the demand of population increase and this increase in chronic illness? Do you think it’s just that the system’s broken and creating these worries for you because it wasn’t designed for our world the way we live in it now?
Anisha: I think partly, and I think it’s around change management. Because we can’t really predict the future. I mean, we can have an idea, but 10 years ago, could we have predicted where we were? I don’t think, with any organization — whether it’s a commercial organization, whether it’s the NHS — I think there’s always that difficulty around … does the left hand know what the right hand is doing, especially when it’s such a huge organization. And I think that’s sometimes where the difficulty can lie, because everything is so much about budgets, staffing levels, the pressure. I think it’s a whole mixture of things. And I think things have changed in the world to a point where, yes, we probably couldn’t have predicted it, or we weren’t expecting it. And how quickly do things change to be able to accommodate that.
And I feel that there is an element of, people are working very hard, but sometimes the actual infrastructure itself is not able to adapt quick enough.
Lauren: Well, that’s the red tape of being a government agency, isn’t it. How quickly can you create change when there are 30 different forms you have to fill out because you’ve got to please every different organization. That’s got to be very frustrating. Certainly over here, I think we’re experiencing similar frustrations, even though the insurance industry is privatized. It’s very interesting that these two very different systems are creating the same problems for patients and for doctors.
Anisha: Yeah. And I think it’s become reactive. When you look at the UK underground system, the Metro system that we have here, you look all the different lines and you’re, like, oh, that’s a bit odd! Because it grew organically. Whereas sometimes when you look at other city systems, and it all looks very neat …
Lauren: London is not like that!
Anisha: Exactly! I think what’s happened with our healthcare system is that it’s grown, but they haven’t necessarily known what’s needed. We’ve been reacting for all these years, and it’s almost too difficult to untangle. There’s not an easy way around solving the issues. I think there are lots of ideas and lots of great things happening. But unfortunately, that can happen when something grows organically to try to meet the needs of the change which is happening.
Trishna: Obviously there are other models in different countries. And I think one of the main difficulties of changing the model at the NHS will be the British culture mindset, how they view the NHS. Because it’s a national institution. People are very protective of the NHS. And despite that, there are lots of people who are saying the same things — that it is a broken system, that things aren’t necessarily working. There is a lot of pressure.
As soon as you say, we’re going to do something to change it, the reaction is, “Oh, no, you can’t touch the NHS.”
Lauren: It’s precious.
Trishna: Yes, exactly. And I think the other danger is that when there’s talk about changing the NHS, and there’s talk about possible privatization, people automatically assume that privatization equals the American model.
Lauren: Which nobody wants!
Trishna: Exactly! Actually there are other either privatized or partly privatized models out there that do work very well.
Lauren: There are already versions of privatization happening in the UK, with things like Bupa.
Trishna: Yeah. What’s happening is that in certain ways, we’re starting to see the emergence of a two-tier system, where people who can afford it are not only paying into the NHS, they’re also paying into private health insurance. Which basically gets you access, often to the same doctors, just in a quicker amount of time — and in nicer hospitals where you potentially get your own room.
Anisha: Free tea and coffee! (laughs)
Lauren: The thing about that, that’s frustrating, is, okay, it’s nice that those options exist. But why should someone have faster access to a doctor? Because they pay more. Compared to someone who might just be sicker. It makes me think that someone who’s going for a general health check is going to get in to see this doctor sooner than someone like one of us who has a chronic illness. That’s great. They’re getting preventive care. But what about the rest of us who’ve been waiting? The clock’s ticking, and we need to go in and see our doctors. It just makes it unfair. That feels nasty.
Trishna: And also, once you’re given a diagnosis of some chronic illness, health insurances won’t cover you — so you end up being put back into the NHS system anyway. So even if you get a diagnosis privately, once you get that diagnosis, you’re then put back into the NHS system anyway. Often people will ask me, “Where are the good MS centers? Should I pay privately?” And I always say to them, “Well no, actually you will be put back into the NHS anyway.”
And actually, the NHS MS centers are basically the best, because they’re where all the research is happening, they’re where the MS specialist neurologists are.
So yes, you might get a diagnosis quicker, which something like MS can, in the long-term, have a potentially positive impact. Because if you get your diagnosis quicker, then potentially you can start thinking about what treatments to go on quicker. But in the long-term, you will still have to navigate the NHS system.
Anisha: What’s also difficult sometimes is around how the different areas can be disjointed. So, for example, if you have a chronic illness, but you have mental health issues …
Lauren: And this is an area of expertise for you too, because you work in the mental health space.
Anisha: I do, and I’ve had mental health issues. I have a chronic illness, I’ve had mental health issues associated with my chronic illness. I’ve had mental health issues due to traumatic events. But actually, even those systems are disjointed. So, what would be ideal is having a hub. With colitis, I could have mental health issues, I could have joint issues, I may need to see a dietitian, for example, around nutrition. I might have to see a continence nurse; someone to do with sinuses because a lot of the medications can cause sinus issues. I may develop other chronic illnesses as well.
So what I suppose would be ideal would be to have a hub where the patient is in the center and you have access to all these people in one space.
Unfortunately, that doesn’t happen.
Lauren: And it could so easily happen because you could create those centers in every geographical area, and just give people the training and the expertise and reorganize the system. But God forbid you touch it!
Anisha: There are lots of things changing. For example, within the mental health area that I work in … and I’m quite lucky that it’s at the forefront of primary care mental health. So, for example, they do have a pathway for people with long-term conditions. And they do have access to certain things. They ask at the point of access, “Do you have a long-term health condition, and is it affecting your mental health?” In which case, then, you do follow a pathway. I’ve been down that route myself. But what I haven’t had, was when I’ve been at the point with my consultant saying, “I’m really struggling here with my mental health” … actually being able to see someone, within that center, at that point. And I think that, again, is where it’s quite difficult. Even in the mental health space, if you move from one area to another … we talked about full access to notes … At the moment we are looking into things, to say, okay, so what can we do to improve that? Because the people we work with, if they then move out of the area, we can no longer work with them; they then have to be referred to their local area mental health service.
Lauren: Is it as simple as the patient being able to have access to all their records, so that you can just carry a file with you to every appointment? But then, who’s going to sit and read that? What doctor has the time?
Anisha: We have our notes. I have files with blood tests, I have colonoscopy results. They give you pictures and everything. I could, literally, make up my whole body with those.
Lauren: Let me give you a picture, yeah.
Anisha: My fashion shoots! Some people will do that, but that can be really difficult. I got tired, carrying this great big file. They’re looking at technology within the NHS, that’s now becoming more prominent. There’s a lot of things that they’re trying to do with that to look at … okay, how can we become more at the forefront and use technology to support patients, to support the medical professionals, to make it a smoother transition? Again, I think the difficulty is, when it all costs money, getting the manpower behind it … all those kinds of things, you have to account for everything. And rightly so. New things take time. So there is a lot happening. But again, even by the time there’s actually access throughout the country, we do still have disparity in terms of access. In the UK, it’s a postcode lottery. So depending on what postcode or zip code you live in can affect services, access to services, medication.
Lauren: Then what happens, at least here in the States, is that if you base anything on a the zipcode, you’re isolating certain groups. And it’s often then people of color who are given fewer opportunities educationally and then medically, and who end up, because of their postcodes having a lack of information and a lack of access to service. Which is what it sounds like exactly is happening over there. Which is endlessly frustrating. I know you guys are advocates and you have ideas about how to fix it. But the echelons of power at which you have to have this communication, this back and forth, this dialogue about change … How does change actually happen? Do you actually see it occurring?
Anisha: Yeah, you do. Maybe not as fast as you’d want it to, but it is happening.
Trishna: And then when it comes to the chronic illness space, I often say that every single person … actually not even just the chronic illness space, but just generally … it’s something that I talk about a lot. When I’m doing presentations, I often say, “Who in the room is a patient?” You’ve got a room full of people from pharma companies, from health tech companies, healthcare professionals, nurses, whatever. And usually, only a few people will put their hands up, those of us who are there as patient advocates usually. And then I’ll say, “Who in this room has ever been to the doctor, or been to the hospital about something in their lives?” And literally everyone will put their hands up. And I’ll say, “Every single person is going to be a patient at some point in their lives. So every single person has a responsibility and a vested interest in making sure that change happens.” It doesn’t have to be something big. It might just be locally; it might be that they get something improved in their doctor’s surgery. It might be if they need a medication, and it’s not going to be funded, so they advocate to get that medication funded. It’s things like that, where every little thing, every small action will build up.
And that’s how change will happen. It’s not solely the responsibility of those of us who are already diagnosed, those who are already in the patient advocacy arena. It’s everyone’s responsibility, because everyone will be using the healthcare service at some point in their lives.
Lauren: I think that’s so well said. I think that really sums up so much of what we’re talking about today.
Anisha: I think often the difference between people who do advocate, or those in the chronic illness area, is because we tend to use the service more than the average. So we experience more. You almost become an expert in … okay, so how do I navigate this? When I phone up the receptionist of my family doctor saying I need an appointment, and they ask me, “Well, can you tell me what it is for?” … Well, I don’t really want to have to disclose my details to the receptionist. But I will say, “I have a chronic illness, I need to see my family doctor.” Whereas the average person that might have to see their doctor once in a year, once every two years, doesn’t have that same experience. So I think it is about people changing their mindset of, well, yes, if I’m using the healthcare service now, that means I am a patient. Also, I think there are different levels of patient engagement and experience in terms of what you go through and what your own experiences are, what you see. And what you then feel actually can make a difference. As Trishna said, it is everyone’s responsibility. And for all the difficulties and faults that there are with the NHS, I think both of us are just hugely thankful that we have it — because without it, I’m not sure where we would be. Certainly we wouldn’t have been able to afford the medications that we’ve been on. Between the two of us, it would probably be the cost of a house!
Trishna: Several houses!
Anisha: Yeah, absolutely. So, for all the difficulties and everything … especially when I’ve spent time traveling abroad and speaking to other people about their healthcare systems, the barriers that they face … I am thankful, regardless of what we have to go through, and sometimes yes, there are things that need to change. But I’m thankful for the fact that I have access. I’m thankful for my consultant who is brilliant. It’s hard enough living with a chronic illness.
Lauren: And that’s the point here, isn’t it.
Anisha: And the one that a lot of people can’t see. They think everything is all well and fine, because you’re smiling and you’ve got a face and makeup on. They don’t see what’s going on.
Lauren: Well, ladies, I want to be respectful of your time. I know you need to shoot. But I feel like we’ve covered so much. And I thank you so much for your time today. I really hope that continuing to have these conversations, just to engage in them, helps people to learn more about creating change. And as Trishna said, we all become patients at some point, so we all need to give a damn.
Trishna and Anisha: Yeah, totally. Thank you for having us, Lauren!
Lauren: It’s been such a pleasure. I love having you guys on. So thank you so much for your time.