Transcript : Haemochromatosis & blood-injection-injury phobia This is a transcript of the video "Haemochromatosis & blood-injection-injury phobia", a guide for clinicians, presented by Dr Haris Yennadiou. [00:00:00] Hello everyone. My name is Haris Yennadiou. I'm a clinical psychologist working in, Guys and St Thomas’s Hospital in adult hematology. I am embedded in a team of psychologist, also working in hematology and we support patients with various metallurgical conditions. Today's session we’ll be looking at, blood injection and injury phobias, and how they affect people who have haemochromatosis. [00:00:37] The main focus of the talk today will be looking how patients can be supported through their treatment to ensure that they receive the care that they need. [00:00:50] So we will be starting the session by looking at, what is a blood injection and injury phobia. And how blood injection injury phobia (BII), can affect people with haemochromatosis and their treatment. We'll also be looking at psychological interventions that can be successful, in treating BII phobias. [00:01:16] But also looking at how, healthcare professionals can support patients who are experiencing this challenges through the treatment. Not, not necessarily just psychologists, but also, their medical teams. We'll also be looking at other psychological barriers to treatment that might get in the way of engagement with care. [00:01:40]And might be associated, with a BII phobia or, might be an entirely different challenge that the person might be experiencing. [00:01:50] So first of all, let’s start by looking at what BII phobia is. In general, phobias, are very powerful and intense fears of certain situations or objects. For example, fear of spiders, but it could be any situation, any situation or object that, he, that might elicit very intense fear in people and people can have phobias, for things or situations that might seem very normal to others, but can be terrifying for the person that's up first with that phobia. BII is a very intense and powerful fear. [00:02:30] And in some cases, fear, also comes with, feelings of intense disgust of needles, blood, or any potential injury to the skin or body that can be caused often by medical procedures. [00:02:46] It is quite common for people not to dislike needles to dislike blood. It is part of human nature. However, but also the fear itself, is quite common with 9 to 30% of adults suffering from BII. And with 50% of children affected to some degree with this phobia. It is often, caused or developed, following a traumatic experience potentially in childhood. [00:03:21] For example, a young person might be exposed to a very aggressive medical procedure or an injection that has been really painful. But it can also develop as a learned behavior where the person observed or witnessed someone who is experiencing a phobia around needles, or blood, or medical procedures. [00:03:47] Sometimes there might be situations where there is not a specific causal event. and it is thought that with BII there might be some evolutionary elements, why people might be scared of needles, injury, and blood it's human nature to about injury. So we might be predisposed to, not wanting to be exposed to those stimuli. [00:04:12] Other characteristics of BII, that's very different or it's not common for this to occur in BII is, that BII is very often 50 to 80% of the time, associated with symptoms of fainting or actual fainting. This, this is called vasovagal syncope, and often it happens without much notice to the person. Any results as a, as a result of the body's reaction to being exposed to, a fearful stimuli. [00:05:00] [00:04:59] What tends to happen is that, the person experiences a drop sudden drop in their blood pressure. And so this is a body's response or way of minimizing any potential blood loss through widening the blood vessels at the thought or fear of potential injury. The person doesn't necessarily get much of a, of a sign that it might happen that might be feeling unwell, but it could happen fairly quickly. [00:05:34] And often the fear of fainting itself becomes more problematic or more scary for the person who suffers from the phobia than their actual fear of needles of blood in itself. BII can also be on a spectrum where some patients might experience more milder version of the fear and then might have already developed strategies to cope with a fear. [00:06:04] But for some other patients, fear can be so disabling and severe that it's unimaginable for them to go anywhere needles are a medical procedure. As we can see from a code from a patient here, the fear is so intense that they were saying that they would rather be having their leg cut off than a little needle. [00:06:26] And that actually shows the magnitude of what the experience can feel like for a patient. [00:06:34] When people with BII are faced with a fearful situation i.e. having to have a blood test or an injection, or even a conversation about a medical procedure, the body goes into a fight or flight response, which is an evolutionary protective response developed to protect humans from actual perceived danger. [00:06:58] This is the exact response our ancestors and humans would have had when faced with a predator, for example, a tiger and the body may freeze or prepare to fight the predator or flee the situation. In preparation of that, the person will experience intense anxiety, panic, but also not to start to see changes to the body that sometimes can be scary them in the, in their own entity and confusing for the patient. [00:07:29] One of the most common things that people experience is, tension in their muscles. and that's to prepare the body to fight or flee the situation. People experienced changes in their breathing where breathing becomes quicker, more shallow as an attempt to get more oxygen to the body and the muscles. [00:07:53] But also there are quite significant changes in the circulatory system what people might note as their heart rate going up, but an attempt of the body to pump more blood, around the muscles to prepare for fighting or fleeing the danger. But also with BII, we, we see, the response of the blood vessels widening to ensure that there is, minimizes the danger of, potential injury and blood loss. [00:08:23] Some other common experiences would be changes to the digestive system. Often people will talk about having butterflies in their stomach or having an urge to go to the toilet. And those are attempts to, get the blood away from the digestive system into the muscles, but also, the actual going to the toilet could be, or feeling of vomiting as well, could be the body's attempt of becoming lighter. [00:08:50] So they can escape the situation quicker, or a fight without having to stop for example. Now people who, how the injection or injury phobia can go about their everyday life without the phobia interfering in their everyday activities. So it's not necessarily a problem. However, if people have to have medical procedures, or more specifically for people with long term health conditions like haemochromatosis where they need to have medical treatments, investigations, the fear can become terrifying and very disabling. [00:09:34] The fear could also manifest at different stages through, the patient's medical pathway. For example, starting from blood tests. To having to have treatments like phlebotomies of venesections and the fear could be specific around, for example, needles, but it could be, specific around bruising or damage to the veins, or sometimes the, the experience of blood taken out from the body or a combination of all of those. [00:10:09] The, the normal reaction or the typical reaction when something is fearful is to avoid it. So it could lead to people not wanting to engage with treatment or struggling to engage with treatment, which we know can have devastating effects for the patient where as a result of not having treatment, they might be faced with very serious complications to their health, like organ damage or sometimes even death. [00:10:38] If they're not able to engage with their care at all, when they're really, really have to. And that can be incredibly distressing for, staff looking after, the patient as well. Especially if treatment is available, but before BII gets in the way of them being able to have treatment, there might also be other psychological implications that might manifest through treatment. [00:11:03]And this could include, things like pain or poor access or bad experiences of poor access or, sometimes people tell us that just the experience of seeing their blood being disposed or discarded, can bring really, really challenging feelings where they might feel that their blood is not even good enough for anything else, but to be thrown away. [00:11:30] And that can be a really distressing experience as well for patients. The good news is that there are psychological interventions that can successfully treat, blood injection and injury phobias. One of the first steps is to provide patients with information. Self help materials to help their understanding of what they're going through. [00:11:58]For a lot of people that it might, it might be that they're experiencing all those horrible anxiety reactions, the fainting, but not necessarily putting everything together, understanding where it's coming from. For a lot of patients that we work with, a big relief is for them to hear that they, it's not just them, that experiences, this fear that the fainting is not their fault, but it happens, a reaction to being exposed to very fearful stimulus and often is an evolutionary response. [00:12:33] And for some people that they have a kind of a milder version of that fear, it could just be sufficient to give them that information. And it helps them to take steps to be able to manage, their treatment or blood tests. or investigations. However, for people who, have more severe phobias, it can be incredibly useful to offer them a course of psychological therapy. [00:12:59][00:13:00] Cognitive Behavioral Therapy or CBT, can be a very successful therapy in treating phobias and change is normally achieved through, helping patients to change their thinking as well as their behavior, when they're exposed to their feared object, or feared situation. Interestingly, normally takes a few sessions, not that many for most people, for this treatment, but interestingly, in some cases, there's emerging evidence that a short one session intervention could be sufficient for some patients, who be able to manage their fear and engage with their care. [00:13:40] And there's also emerging evidence of using virtual reality who help people with this fear, which could be a very promising, very promising pathway for, quite a few patients, especially younger people. So what happens during a course of therapy? One of the first steps is a deeper understanding and assessment of the causes origins as well as details of the fear. [00:14:09] For example, is the fear around the cycle of blood? Is it that needle? Is it an injury to the skin? Is it about something else? We always want to check if fainting is present because there's strategies that the patient can be taught to help them to manage fainting by increasing their blood pressure, which we're going to go into a bit more detail in a minute. [00:14:35] And that strategy is called applied tension. So for the people who do faint, they also get an opportunity to learn those fields. The next step is to collaboratively construct what we call, an exposure ladder, which is part of, an exposure therapy. What we know about phobias and fears is that when people are safely exposed to that fear or a lot, a long enough period of time, what they notice is that their distress starts to decrease. [00:15:07] Once the exposure ladder is agreed, the therapist will help the person go through each step of the ladder and support them to address any unhelpful thoughts or fears that they might be experiencing. For example, if there are fears around feeling embarrassed about fainting or having thoughts or images that the needle could be incredibly, invasive or huge or incredibly painful, what we know about exposure therapies that it works really, really well when it's done in situe. [00:15:54] So when it's done in real settings where the person is exposed to this stimuli that they're very scared of that rather than imaginary exposure. So it's always really helpful for patients to have the opportunity to do some of that work on the unit. If there is a therapist or a psychologist that works in the hospital or in the unit. Or if that's not possible, arrange some form of a visit to the unit so that they can start getting familiarity with the surroundings and staff, but also looking at some of the stimuli, for example, needles or what's going to happen during the process. [00:16:36] And that's done supportively during their therapy. [00:16:40] So this is an example of what an understanding of the cycle of anxiety and phobia looks like for a patient. Often the trigger is, could be something like seeing a needle or hearing about the procedure that needs to happen. And what the person might experience is intrusive automatic, quick thoughts. [00:17:07] Like this needle is huge, it will cause terrible bruising, it's going to be very painful. Sometimes associated with thoughts, like I'm going to faint, it's going to be really embarrassing, it's going to be horrible. Very common feelings that come in that cycle are fear, anxiety, or disgust sometimes panic. [00:17:27] And all the body responses that we've talked about earlier, happen almost automatically. So lightheadedness, sweating, dropping in blood pressure, often fainting. Now the most common behavior when we're scared of something, the understandable behavior is to avoid putting ourselves in that situation. [00:17:51] Unfortunately, what that can do with a fear or phobia is make it much more powerful. And this is where the graded exposure comes really handy because we're encouraging to break the cycle by safely and gradually, helping the patients to, be exposed and get used to those situations. Now, this is the first step in therapy. [00:18:20] If fainting is present, the patient is taught applied tension. A technique that can increase blood pressure and prevent fainting through tensing and relaxing muscles. The person who's taught practices like tension in the session, but it's encouraged to keep doing that, in their own time, at least for a week before they can start some of the exposure work and that can help the person feel more in control of fainting. [00:18:52] Of course, we always want to check if there are any problems with blood pressure, in which case this might not be a strategy, but for most people it's quite safe. So we always check with medical themes. One of the things that can be incredibly helpful, it can be done by their therapist or psychologist, but also by the healthcare team is to provide lots of normalization and encouragement, even if fainting occurs or finding the person that they can do quite a lot, to control it. [00:19:25] That is not something that's uncommon. That is okay. Even if it happens. So for example, that can, put their feet up or, sit down or be somewhere safe where they're not scared of injury or potentially, feeling embarrassed about fainting. We also teach people relaxation techniques that can be helpful, help some of the feelings of anxiety, which can be a nice complimentary strategy as well during the exposure work. [00:19:57] This is an example of what an exposure ladder looks like. So what tends to happen is that we, collaboratively construct, what we call the person's distress ladder. Starting with, a situation that might be quite scary, but not as scary as, having, for example, an injection or the medical procedure. [00:20:23] And we get people to rank the different situation based on distress rating or how distressed they feel when they're exposed to those situations. So the work might start by, for example, getting the person to be exposed to the idea of thinking about having an injection or looking up photos of an injection or potentially photos of stimuli that they find, distressing and then slowly move up the ladder. [00:20:56]To the situations that are a 10 out of 10 on their distress rating. Normally that's the goal that they want to achieve. For example, have an injection or draw blood or in this case, it could be actually having a venesection. [00:21:12]The person will be exposed to each step at a time until their distress rating reduces to zero, which happens most of the time, even if it might feel unimaginable for the person, once they start treatment. And here are some examples of the images that people might be exposed. As you can imagine it's not a nice process if you are, being exposed to what you're scared of. [00:21:41] So it takes quite a bit of work, to support that person, to understand the rationale for doing it rather than, feel that they're put under, rather than them feeling that they're put under unnecessary distress. Then apart from the images, we also are really keen to get the person to be exposed to the actual material that might be used during treatment. [00:22:08] For example, actually touching a needle, going into the unit to see what the equipment looks like, and that can be incredibly helpful. Apart from psychological therapy in itself, there's a lot that can be done, to support patients who are experiencing a BII phobias, through that treatment by the medical care team and all the healthcare professionals involved in their care. [00:22:35] So at the initial stages, perhaps at diagnosis or before treatment starts, it can be incredibly helpful to, have a conversation that allows the healthcare professional, the doctor, the nurse, to explore the person's feelings about their treatment. Perhaps this can be done when they're being given a lot of information about their treatment. [00:23:01] And that can be in the form of asking questions, like, how do you feel about the procedure? Are there any more information you'd like to know? Do you have any specific concerns? But it's also worth asking specifically whether there are any fears about treatment itself, especially if there is a presence of needle phobia, blood phobia, injury phobia, or a combination of the three. [00:23:31] So for example, asking if they ever had an problems with needles or any problems having blood tests done or donating blood and at that point, it can be incredibly powerful to normalize and validate that a lot of people go through those fears and that they're not the only ones who struggle. Could also be really helpful at that point to establish whether. [00:23:56] The fear is unmanageable fear or is it a dislike or actually, the person thinks that they can't manage without getting some support. In which case it could be incredibly helpful to discuss a potential referral for psychological services. That could be done via a health psychology department. If one exists, in the unit or hospital. [00:24:24] That the person is being treated, but also every borough would have, in the UK would have their own booking therapy service, which is called IAP in most areas. And there is a direct place where you can type the patient’s postcode and can give them a choice of which, talking therapy service is available to them. [00:24:50] If a referral, if a referral is agreed and there is an urgency, to start treatment as soon as possible, it's always worth flagging up that it's on our general referral and the reasons why, and the person might be seen quite soon or might actually be seen on the unit and fairly quickly. One of the things to keep in mind if you're offering, support and treatment, is that the idea of, even having treatment can be terrifying. [00:25:22] So that's what a lot of validation reassurance can be incredibly helpful. And as part of that stage in the person's care it can also be incredibly useful for them to go around the unit, perhaps meet staff. So it helps with their familiarity and it helps with their confidence as well. [00:25:46] During treatment there's quite a lot that can be helpful as well. So, putting the patient at ease, asking questions about what helped them in the past. Some people really like to have a conversation whilst having their treatment or blood tests. Other people might choose not to, remain silent and not have the conversation. [00:26:10] For lots of people distraction help, helps a lot. So encouraging the patient to bring music, books, something to watch. Maybe the laptop. We have lots of people who come for that treatment and bring their laptops with them. They might still be doing work or speaking to friends, that can be an incredibly useful strategy. [00:26:31] It's also really helpful to allow more time for treatment or the blood test, if some, if you know that someone has, the BII phobia. And that kind of helped with the frustration of more time needed if it's not planned accordingly, but you can also help the person feel more at ease and not have that feeling, that they're creating a problem, which is often what patients tell us. [00:26:59] There might be situations where a patient might ask for a specific member of staff, to do their blood tests or treatment. If that's possible, it might be really helpful. And that has a lot to do with feeling more comfortable. If they had a good experience with a member of staff, they might want to, keep, keep the same member of staff doing their blood test. Which might not always be possible. [00:27:26] But if a person who's asking for that, don't take it personally. It's probably a way of them managing their anxiety of having an injection or having, a venesection. If a patient does not attend an appointment it can be incredibly helpful to follow up, to understand the barriers or difficulties that they're facing. [00:27:51] It could be that they're really struggling with a phobia and specific aspects of their treatment. But it could also be that there might be other factors that are getting in the way of them accessing care. Some of these factors of barriers could be, Difficulties with adjusting and accepting their condition. [00:28:12] It might be that they're really, really finding it hard to come to terms with the diagnosis or having to have treatment or more treatment. There might be other stressful life events that they're experiencing, which might mean that they might not see the health as a priority. For example, they might be dealing with the loss of a job or housing problems or family difficulties or a divorce. [00:28:37]So it can be a really helpful discussion to, explore in a very compassionate manner, what might be getting in the way and think with a patient, how. how the medical team, the unit, can support the person through their care or what other support they think they would need. For example, a referral to a welfare benefits advisor could make a huge difference for them. [00:29:06] But without knowing it's very hard to know how to support the person. There might be also difficulties with communication with medical teams, or the person might have had very difficult experiences in the past with medical teams. So they're very reluctant, to, to come to hospital. There might be other psychological difficulties and vulnerabilities or preexisting, mental health challenges, which might have been exacerbated by the health difficulties of a person is facing. And it's always worth exploring what support the person is getting. Are there any other teams involved in their care that the patient is happy for the unit to liaise with in how to support them access their treatment. [00:29:56] We know that people with, for example, severe enduring mental health difficulties are less likely to access care. But their, their experience as well as their health massively improves when services work together. There could also be some practical considerations or barriers like the person fully understand their condition or treatment or the consequences of not having treatment. [00:30:27] And there might be other practical considerations, like not having access to transport or, difficulties with childcare. That might actually be getting in the way. And this could, all of this could be part, or associated with a phobia outcome alongside the phobia, or it could be the reason why the person seems to distress or not engaging. [00:30:51] I have also, in, in the presentation, which you hopefully receive a copy. There are some resources that you might find really helpful that you can give to patients. But we have a leaflet in Guys and St Thomas's hospital in London, which is a self help leaflet that supports patients with knowing how to overcome a fear of needles and gives a lot of information about, what the phobia looks like, what they can do. [00:31:19] There's also, some useful information on Anxiety UK and Anxiety Canada that gives again, lots of self-help tips on managing the blood injection and injury phobia, as well as tips on how to practice applied tension. And, and finally, there is a link here for you on how to find a free NHS booking therapies, in your area, which can be a really useful resource if there is no access to health psychology team, in your area. [00:31:57] So thank you so much for your time. That's all from me today. I hope, this session has been useful, and your more than welcome to contact us in the health psychology team at Guys and St Thomas’s Hospital, if we can be helpful in any way. Thank you again.