[00:00:00] Having a long-term condition raises a whole bunch of issues that most people don't realise. If you have a long-term condition that affects you your whole life, just because you're not in hospital doesn't mean you don't care. You need social care.

INTRO MUSIC WITH LYRICS: Stories, Labels, Misconceptions NHS remains a blessing Created in 1948, We want it to remain great A podcast where we share our stories Explore solutions in all their glories, they say it's broken, but it's not done. With your host, Val Barrett, Dr Jeremy Anderson

VAL: Welcome to Stories, Labels and Misconception, co-hosted by me, Val Barrett 

DR JEREMY: And Dr. Jeremy Anderson, 

VAL: a [00:01:00] podcast where we share our stories, experiences and explore solutions to the issues we face today within the NHS and social care.

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DR JEREMY: This week's episode is Unveiling the Struggles in the NHS and Social Care. 

DR JEREMY: I'm a clinical health psychologist, and I work for the NHS in England. I work mostly with people with sickle cell disease, which is a lifelong condition. 

VAL: Can you explain what sickle cell is, please? 

DR JEREMY: Yeah, sickle cell disease is a name for A number of inherited health conditions that affect the way the body makes red blood cells. So, people with sickle cell disease produce unusually shaped red blood cells cause problems because they don't live as long as healthy red blood cells, and they can get stuck in small blood vessels. This causes a kind of pain called ischemia, and [00:02:00] we call these red blood cells. Sickle cell crises. These are bouts of severe pain that can happen wherever sickling is occurring. People with sickle cell disease are at increased risk of serious infection. 

VAL: Yeah. 

DR JEREMY: And they suffer from something called anaemia, essentially tiredness, because their red blood cells don't carry as much oxygen as regular red blood cells.

VAL: Isn't it dominant more in African and African Caribbean communities? It is. 

DR JEREMY: Yes, it's more common in people with African or Caribbean family backgrounds, and that's because this group of inherited conditions tends to arise in places that have malaria. If both parents are carriers for the illness, that means there's a 25 per cent chance for any of their children to have the disease.

VAL: Remember when I was growing up and I heard a little bit [00:03:00] about sickle cell disease, I was told it was just about feeding pain. And I didn't know until I had my son when he was two years old, and because of his sickle cell disease, he suffers from having strokes. So, I think it only does one thing. It does many things anywhere where you've got blood flowing in your body.

DR JEREMY: Most people maybe don't know this, but when you have a long-term condition or a lifelong condition, going to access healthcare is much different than if you're a healthy person who almost never comes to hospital. And so, having a long-term condition raises a whole bunch of issues that most people don't realize. I think the first one is that people who come to hospital all the time they know a whole lot about what happens. They become experts in what's supposed to happen, and they notice when stuff doesn't go right. [00:04:00] If you're someone who has never been to hospital before, but you break your leg and you need some care, If the nurse uses the wrong size cannula or one of the doctors doesn't prescribe the medication at quite the right time, you don't know, because you don't know any better. But if you're a lifelong patient, you notice that stuff, and I think, oftentimes, healthcare staff don't really appreciate how much patients know and scrutinize what they do. 

VAL: Yes, I agree with that, but it's not just appreciating what patients with long-term conditions know is about respecting what we know and working with us at the end of the day. shouldn't we know a lot about the condition that we're living with? Surely, it helps clinicians, it helps nurses. 

DR JEREMY: The other issue I think that happens with long-term patients compared to short-term, for staff, I think [00:05:00] it's a very different experience caring for the same person over and over again, and they never really get any better. I think the main payoff for people who get into healthcare is they really want to see people get better. They feel good about themselves, feeling like they did a good job. If someone comes in and they're sick, but then the doctor or the nurse or whoever it is does something and that person gets better, and they go home and everything's great. But with a long-term condition or lifelong condition like sickle cell, that really doesn't happen. People come in; they have acute symptoms in the moment. And maybe those get better, but Britain still has their condition. And even if they stay at a hospital for a while, oftentimes they come back. So there doesn't seem to be that kind of payoff. And so, I think that situation just ripe for the relationship to break down. I think a main reason why I would like to do this kind of podcast. [00:06:00] Is to bring people together. I'm a healthcare professional, and you're an expert. You're just not paid for it. So, us having conversations together about this stuff, I think, is going to be really interesting. And what I really hope happens is that we can start to get guests on and have interesting conversations with people about what is it like to be in healthcare. What is it like to care for people who are sick? And what is it like to be a patient or to be cared for? So that's what I'm here for

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VAL: I've been caring for my son for over 28 years now, living with disabilities and struggling with long-term conditions. Our lives are deeply impacted by social care and health policies. My aim is to use this podcast as a platform to create awareness, inspire action and influence positive change. NHS is in desperate need of modernisation. [00:07:00] We have to have different ideas and different ways of doing things. We're a bigger population, we are living longer, we are managing illnesses better. But there are things that don't require hospital care that can be done in the community. And we need to focus more on the resources that are already here instead of reinventing the wheel; social care is where the focus needs to be. That's where the major changes can happen. More connection with your pharmacist. Instead of trying to get an appointment with your GP, which you probably can't, or even clogging up A& E and sitting there for hours on end. Go to your pharmacist first. People don't seem to realise these are highly trained specialists. My first [00:08:00] point of call is my pharmacist. And if they don't know the answer, then I might go and try and get my GB. People living with long-term conditions already know how to manage their condition. They are the experts. They just might need more resources support to keep them at home instead of going into hospital when it's not necessary. The community is shut down at 5 o'clock. What is that about? You can't schedule your breakdown or your illness between 9 and 5. If there's a hub, can be used in the community where it's 24 hours a day, seven days a week, that has specialist care providers that work with people with mental health problems, that can be seen when they [00:09:00] need to be seen. Whether that hub is inside of A& E or somewhere else, where it's not in the main part, the police have already announced they are not coming out for people with mental health breakdowns. They are there to catch criminals. There needs to be a safety net for people when they need it. And right now, it's not working. Certain illnesses that are talked about, is if a celebrity has it, or a member of their family has it, then it's going to be talked about more. There will be more focus on that illness. Whereas others won't get that, and government tends to then plough a lot of money into that particular [00:10:00] illness that has been high profile at that time, like cancer, which is brilliantly highlighted, and it should be, because I found was, there's currently 3 million people in the UK that are living with cancer. I have a friend who is currently going through treatment, then what that does, it creates a gap, another inequality with other illnesses that don't get a mention, that don't get all that money pouring in. When we talk about certain illnesses like sickle cell, which has approximately 15,000 living with sickle cell in the UK, and approximately 11,000 with cystic fibrosis in the UK. The numbers aren't particularly high, they are still complex long-term conditions.

DR JEREMY: For those who don't know, cystic fibrosis is an [00:11:00] inherited condition that causes a sticky mucus to build up in the lungs and digestive system. So, people with this condition have a lot of lung problems and infections and also problems digesting food. Yeah. So, cystic fibrosis is often compared to sickle cell disease because the effect on people's quality of life. And lifespan or average lifespan is fairly similar. They also have a risk of infection, like sickle cell disease. It's an inherited illness in the same way. Although this is the genes that cause cystic fibrosis are more often carried by people of white British or Caucasian background. Yeah. So, I think the NHS website said that one in 25 people in the UK. carry the gene for cystic fibrosis. And so the inheritance pattern is exactly the same.

VAL: It seems so strange that the numbers are quite similar [00:12:00] as well in the UK with sickle cell and CF, as I call it, everybody has that right to have equal access to care, whether it's cancer care, stroke care, we all have that equal right. What we're trying to do on this podcast, not only highlight other illnesses but come together about what are the lessons that we can learn from each other. What can we do to enable social care to become better? Because unless you use it, you don't know what works. Social care is not just about how services are delivered, but it's also about empowering the recipients of the services. Especially those living with a chronic long-term condition that do rely on these services to work, to enable them to stay in the [00:13:00] community at home than to be in and out of A&E. Listening to them more, not waiting until he gets so bad, or you should be listening anyway with the voters. We want ownership, and if we talk about individualized care. Then how are you going to know what I need unless you empower me to be able to voice that, to be able to be part of that? People need to feel. That the system is going to make their lives better and their lives easier. But all the money in the world that they're putting into the NHS is not solving that.

DR JEREMY: Having a long-term condition means that sort of hospital care and social care need to be more joined up, right? If you don't have a long-term condition, and you never access the healthcare system [00:14:00] unless you go see your GP or go to a hospital. But when you're not in those instances, you're not looking for care, right? But if you have a long-term condition that affects you your whole life, just because you're not in hospital doesn't mean you don't need care. You need social care, and that's where the two need to join up. And I think people who don't go through long-term illness don't appreciate that.

VAL: We don't look at preventative care. We don't provide the Resources, we're not creative enough thinking on social care and health given that my son has sickle cell disease, and he does suffer, he's had strokes and that, and of course, when you do have any condition, you're always going to have follow up appointment, clinic appointments, regular scans, X rays, blood [00:15:00] tests. We got the letter to go for a heart scan, just a routine check-up. We got there, and he had the scan, and the young lady looked, and she says, you’ve got to go now to St. Mary's. She said we can see a clot. On his heart, we're in the ambulance that was outside, and we got taken straight there and we received treatment. Once we got home, we had to continue treatment until everything was clear, but I'm telling you, he doesn't bear thinking about if I had missed that appointment. opens your eyes, and you always hear things about blood clots and things like that. [00:16:00] I cannot stress the importance. Of going to routine checkups, 

DR JEREMY: Having early intervention or prevention, but it just prevents all these problems later on, right? So, if you catch something early, if mom's depressed after giving birth, if that can be caught early before baby is neglected or unfed or something like that, intervening early and helping problems never arise in the first place is going to be a lot cheaper to deal with.

VAL: It's not as if government don't know what the issues are. Governments, they know the issues. We've had so many NHS plans, reports after reports, so many inequality reports, and guess what happens after an inequality report is published? The inequalities widen. After the Black Report, it widened. I want to focus on three 00:17:00 main reports: the Blackmun report, Acheson report and the Marmot report, if I'm pronouncing that correctly. We know by now money alone doesn't solve the crisis that we have within the NHS and social care because the government have told us they plough a lot of money into the NHS. But people need to feel. The difference they need to feel that there is a change that the money is making a difference to their lives instead of sitting in A& E for, say, seven hours, they might sit, say, three hours, instead of waiting, I don't know, three weeks for a GP, they might wait three to seven days. People need to feel that the system is working for them. It's going to make their lives better and their lives easier. But all the money in the world that they're putting into the NHS is not solving that. [00:18:00] It's just going to get a lot worse before it gets better. We're living in an age when we have so much technology.

DR JEREMY: So this week, I went to the HET North conference. That's the Healthcare Excellence Through Technology conference in Manchester. It was an excellent conference. It was a whole bunch of exhibitors, like a trade show, showing their stuff. And then there were a number of talks and symposiums. One of them was on pharmacogenomics. That's the idea of being able to. Relate people's response to a drug, their particular individual genome. So we all know that one person can take a drug and they get an effect and another person takes a drug and maybe it doesn't work or maybe they get a side effect or maybe they have some strange allergic reaction, but this technology, it would be a [00:19:00] model where Based on someone's genetic profile, a doctor could say, okay, normally we would give this drug, but I can see you've got this variation in your genome. That means you probably won't benefit from this, so we won't bother with that. I think that was a fantastic talk, but I went and saw a whole bunch of different exhibitors. One of them that I thought was interesting and related to patients when they leave hospital Is this idea of using smart devices like smartwatches and various kinds of query monitors and things where people where your data can be sent. To your clinician or your team, your GP, maybe, and so what that means is you still need care. You still need monitoring, but maybe you don't need to be in a hospital bed. And the idea would be if your scores go outside of a particular range, your clinician gets an alert. I think for something like sickle cell, [00:20:00] that would be great. They can monitor falls. 

VAL: Did it work for anything else? 

DR JEREMY: Oh yeah, this is general. They've got all sorts of things they can monitor, including blood pressure, heart rate and oxygen saturation. They're willing to adapt their system to whatever kind of device is being used to monitor some parameter. And this idea of virtual wards is really interesting to me. Especially coming out of the pandemic because with our patients They were at home shielding. And normally when people would have a symptom, we would say, come to hospital and we'll check you out. But during COVID, we do not want people to come to hospital because that's where all the COVID is. And there was a need to check on people, and so sometimes we would give these some oxygen saturation monitors, but there was no system for reporting. It was just up to the patient to take their own reading. And if [00:21:00] they thought it was low, they could give us a call, but there was no way of Actually checking that if there was a system where something like that could be actively monitored, I need someone to monitor it. But if people could be monitored and reassured if they didn't need to go to the hospital, then maybe we would have resources to have someone monitor that.

VAL: We change certain habits because of COVID. We had clinic over the phone, over Zoom, obviously with treatment that had to be done in hospital. But as for sitting in a clinic area for hours waiting to see your specialist that could just pick up the phone and just tell you. It ain't. So, what I do, I mix it up. I will have a time when it's over the phone, and then there's a time when we need to see each other face to face.

DR JEREMY: What do you prefer? Do you prefer face-to-face or video, or are there [00:22:00] certain things that you prefer and certain things? 

VAL: I like a mixture. In between those times. It's also about going to appointments for investigations. This is what keeps you well. And this can also reduce the amount of time you spend in hospital. And this is the part of the show where we get to choose our very own story. Label a misconception from this week's episode,

DR JEREMY: Val, what's your story label and misconception for this episode?

VAL: Oh, Jeremy, one of the stories that really stands out to me is about the smart devices. When you went to that conference, was it NFT?

DR JEREMY: H E T T. Sorry.

VAL: H E T T. 

DR JEREMY: Yes. 

VAL: And you talked about smart watches or smart devices. When patients go home from. Hospitals that still [00:23:00] able to be monitored. So, if anything does change, that alert goes straight to the clinician. They're still getting care. The idea of virtual wards, a community. I do believe that this is the way forward in social care and health. My label is that people with long-term conditions when they do have a crisis and they go into. Hospital, and then they, everything's done, they get discharged that everything's okay. Then, once they go home, they still need social care. By misconception, people think it's only old people that have strokes. as we both know, it's very common within the sickle cell community that children from the age of two are having strokes and not just one stroke, they're having multiple strokes.

DR JEREMY: [00:24:00] Yeah. Most people don't realise kids can have strokes, too. 

VAL: Yeah. So that is Mines. Tell us what your stories, labels and misconceptions for this week's episode are. 

DR JEREMY: As for my sense of the story, label and misconception, there was part where I talked about people with long-term illnesses coming into hospital more often than the average person. And as a result, they know more about the way hospitals work how they're supposed to function. And when they don't, these patients notice, and this causes relationship breakdown. I think when that happens. It's tempting to label the people you're interacting with, if it's the patient, labelling staff as lazy or uncaring, and staff can label the patient as difficult or challenging, and it illustrates a misconception, and that is that in both of those cases when they're labelling, they're attributing the person's behaviour to some sort of internal, [00:25:00] stable characteristic, a part of their personality that makes them, rather than acknowledging The influence of the situation, the person's in for the last 60 or 70 years, social psychology research has shown that the environment or the situation people are in determines their behaviour far more than their personal attributes. So that's where I would land on that. 

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VAL: Brilliant. Thank you. I have enjoyed our very first episode. 

DR JEREMY: Yeah, it's been fun.

VAL: It'd be nice to know if you agree with either Jeremy or myself about our choice of stories, labels or misconceptions, or do you have your own when it comes to this episode? You can WhatsApp us on 07 444 041 07 444 041. Nine, five, one, and just get involved, and [00:26:00] that's the end of episode one, and we'll see you soon. 

VAL: See you next time. Bye-bye. 

DR JEREMY: We hope you've enjoyed this week's episode of Stories, Labels, and Misconceptions. We would love to hear your stories. Don't forget to subscribe wherever you get your podcasts. 

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