 Good afternoon, everyone. My name is Ana Vallejo. I'm the communications manager of Myeloma Patients Europe. Welcome to this webinar, including the AGM 2020 webinar series. As you know, our annual general meeting was cancelled due to the COVID outbreak, and we are delivering our educational program in a virtual way by giving all sessions as webinars. Today's webinar is special because it's the first one not only focused on the patient, but also on the relatives and cares and the challenges that they have to face around the disease. This webinar will be given by Ellen Waters, a Myeloma Information Nurse, especially at Myeloma UK, the MP member in the UK. And for your information, this webinar will be recorded and will be uploaded to the Myeloma Patients Europe website, which is www.npeurope.org, and it will be also available in the MP YouTube channel. The webinar today is scheduled from 6 to 7, so the presentation will last about 40 and 45 minutes, and then I will open the session for questions. In case you have any question, there are two ways to ask questions to our speaker today. One of them is using the microphone in your computer, as I'm doing right now, so just press the right hand button that you will see on your screen, and I will unmute you so you can ask directly your question to our speaker. If you don't want to use the microphone, another option is asking your question in writing. You will see a chat window in your screen, so you can write your question there, and I will receive those questions, and I will ask those questions to our speaker today on your behalf. On behalf of Myeloma Patients Europe, Ellen, I would like to thank you for your help and for being here today to give this webinar. Thank you very much. Thank you, Anna. Thank you. And of course, I'd much rather be with you all in Amsterdam, but these are unprecedented times. I'd like to thank you for inviting me to talk today about the impact of Myeloma and AL amyloidosis for those who are carers. I hope everyone is safe and everyone is well. Whilst my experiences and the work of Myeloma UK is UK focused, the challenges faced by carers, of course, is universal. So I'm sorry if this topic loops as if it's a little bit UK focused, but we're all in this together. So first of all, I'm just going to move on to my next slide. So first of all, I'd like to give a brief overview of the work we do at Myeloma UK, just in case some of you're not familiar with the charity. We are the only organisation in the UK which focuses on Myeloma and its related conditions, such as AL amyloidosis, of course. We work closely with pharma companies, with government bodies to ensure best practice and to improve standards of treatment and care. We provide a range of resources and a variety of formats to inform those accessing our services. And we do not receive any government funding, so we rely entirely on the generosity of our fundraisers. So as mentioned before, our patient advocacy team works with patients, doctors, the pharma industry, alongside our information and support services to make sure that Myeloma patients do receive the best possible treatment and care. And of course, we support trials which are innovative and patient-centred. So we have three main strategic goals for each of the key areas within the healthcare advocacy services directorate, which were included in the slide above. So these are to inform, educate and support, to facilitate timely diagnosis and high standards of delivering care, and to improve equity, inclusiveness, engagement and reach. To help us achieve these goals, we also work closely with thousands of healthcare professionals. Our online services and educational resources for doctors and nurses aim to support the work that we do by keeping them up to date with the latest in research discovery and in treatments for Myeloma. Our services include developing resources for healthcare professionals, and these include the nurse learning program, which has, and we also have short courses for hematologists, tutorials, seminars, key publications, clinical guides, best nursing best practice guides, medical animations and latest news and events. So healthcare professionals know they can just go on to their section of our website and be fully informed and up to date with the latest. Our clinical services excellence program, which you may have heard about, was established in 2015 to recognize where superior care is given to Myeloma patients, to share best practice in the practice initiatives, and to benchmark optimum standards in Myeloma treatment. Today, about 20 UK hospitals have received this accreditation, and there are many more in progress. Any UK hospital treating patients is eligible to apply for CSIP, and participation in the program includes completion of patient experience surveys. So we involve patients, we involve family members, and they all have their say in making sure that that the hospital that they attend, the healthcare professionals that they speak to are delivering the best practice. So we ask for things like new patient experiences, whether or not the hospital takes part in clinical trials, how they are with multidisciplinary team working, even down to their their programs and processes for end of life care. And of course we have an early diagnosis steering group. It's a panel of experts dedicated to identifying the major issues and making sure that patients are diagnosed as early as possible. It's imperative that patients are diagnosed early. The complications caused by Myeloma and by AL amyloidosis can be devastating, and early diagnosis is absolutely imperative. We are expanding that early diagnosis, of course, to include those with AL amyloidosis. So I work within the patient and carer services department. My main job is to answer our free phone helpline, the Myeloma infoline, which I've been doing today. I've been speaking to many patients and families today on the helpline. And this also incorporates our Ask the Nurse email service. So I'll talk a little bit about these services, about my role, and then I'll turn my focus specifically to the concerns that the carer space and the topic of the talk today. I will get round to it, I promise. As well as our Myeloma infoline, other resources for patients and carers include our info days. We have about 10, 12 info days every year, and we always make sure that we include a session specifically for carers. We have support groups, we have online resources, as well as a range of award-winning publications available to download or as hard copies. So I'll give you a brief overview of my role at Myeloma UK. I am a registered nurse, and I have been for many years, and I maintain my nurse registration with the NMC, that's the nurse and midwifery council. Whilst I was a nurse on the wards, I did gain a diploma in cancer and palliative care whilst I was working for the NHS. But I've been at Myeloma UK now for 17 years, more than 17 years, so all I've done in 17 years is Myeloma and AL amyloidosis. And as I said, my main job is to answer the helpline there and the email service. As it's my main area of expertise, of course I'll focus on infoline and the email service, and I've got statistics to share with you. I've got examples, I've got feedback that highlights carers' concerns specifically. Then I'll talk a little bit about the nature of how and why carers are affected. I hope you'll find it of interest, and of course I'm happy to answer any questions you may have at the end, or please feel free to interrupt me. So the Myeloma infoline is free to call, available weekdays, Monday to Friday, nine till five. We did do a pilot last year where we extended the service for a few months to a Saturday morning, and that pilot is being evaluated at the moment. So we may well extend our hours, watch this space as they say. We aim to answer at least 80% of calls first time by a Myeloma information specialist. Now I'm a Myeloma information specialist, and I work alongside Sarah and Kim, and we're the three people that people will speak to when they first call our service. They'll either get me, or they'll get Sarah, or they'll get Kim, and we are obviously very knowledgeable about Myeloma and its related conditions, and hopefully we can answer any questions that people have and put their mind at ease that they're not alone. So we are committed to providing the best quality service to anyone who calls the infoline and uses our email service, and this has been accredited by the Helplines partnership since 2004 with a quality standard, and you'll see the logo there on the slide, the Helplines standard, which is quite prestigious award, and we've received it since 2004. We collect a lot of statistics around calls and emails, and last year's annual review of the infoline and the ask in our service showed that of 3947 contacts, almost 35% describe themselves as carers, family members, or friends. So our services are unique and tailored to those people who come to us. To look specifically at the calls to the Myeloma infoline, we can see from the 2019 end of year report that the majority of service users are patient and female, and most callers wanted to talk about Myeloma. This is no surprise as in the UK there are more than five and a half thousand cases of Myeloma diagnosed every year, as opposed to between five and six hundred diagnosis of AL amyloidosis. We have to bear in mind of course that the Myeloma infoline can be anonymous and it is caller led, so we don't always know who's at the other end of the line. Now looking at the same with regard to the emails we received for 2019, it's a similar picture but with a higher percentage of those who said identifying as carers. We have collected information from questionnaires about callers experiences. This is a tool that's currently being reviewed. However from this snapshot of experiences we can see that prior to making a call service users were overwhelmingly looking forward to finding out more but did admit to feelings of anxiety. Many weren't sure what to expect but were hopeful. I'm looking at how they felt after the call which is very important. Our snapshot confirms that callers felt more informed, more confident, less anxious and less isolated and that's what makes it all worthwhile. So the feedback that we receive is consistently positive. I've added here a selection of recent quotes from carers which were received from a variety of sources which shows the impact the team has on service users. I'll just read them out for you. Without Myeloma UK I wouldn't have coped when my husband was first diagnosed. Thank you so much to the infoline team. You have been really professional, really helpful and supportive and answered all of my questions about how I can support my friend. Honestly, this is so so helpful. I feel like the whole family is just feeling a bit lost and we didn't know what to expect. I called the Myeloma helpline because I thought he had been handed a death sentence and I didn't want to show him how frightened I was. They were remarkable and really helped me understand that this was something that could be lived with. Lovely, it's really nice to receive that sort of feedback and it just makes you want to do more. So now I'll explore how a diagnosis of Myeloma or AL amyloidosis can have a hugely emotional and psychological effect on those caring for them and give some examples of actual experiences to give you some insight. I'd like to introduce a case study from a challenging call which we took on the Myeloma infoline. The infoline team, the MIS, the Myeloma information specialist that I talked about earlier, we meet regularly to discuss, reflect on and learn from challenging calls and emails. Have a look over this case study and at the challenges which are presented here and have a think how you might have dealt with a similar call. I'll go over it. So the caller was a carer, of course. Unfortunately, her husband had died six months previously. The patient had had several lines of treatment and had issues with relapses and side effects. The caller was frustrated that the doctors didn't continue the treatment. She said she wasn't ready. She thought she had more time. It was a very emotional call. She blames herself and she can't seem to move forward with her grief. So the call was an emotive one and whilst it's important for the Myeloma information specialists to empathise, to acknowledge and to show compassion, we can't let such calls affect us to the extent that we are ineffective. A phone call is tricky. It doesn't give you some of the clear signals which you would normally rely on, like facial expressions, like body language, and it can be hard sometimes to gauge the caller's emotional state of mind. There are often silences on this type of call. Silences aren't necessarily a bad thing and they can mean that the caller is thinking about what has been said, thinking about how best to form their questions and reflecting on the situation that they're experiencing. We wouldn't be immediately jumping in to fill such silences, but we would be letting the caller know that it was okay to be silent, using such terms as I'm still here, take your time. Of course we can't see the patient's notes and we haven't been looking after the patient personally. So there are big gaps in our knowledge about the individual situation. We would use open questions to help us gain more insight and help us better answer the concerns, clarify issues and support and inform the caller. So the myeloma information specialist approach on this call, this is where she summarised her approach. So all calls are answered in a compassionate, empathetic manner. We acknowledge the situation we offer explanations about the complex nature of myeloma in order to give clarity and to answer the caller's queries. We remain objective throughout and signpost to other resources where appropriate. For this type of call we would be signposting perhaps to bereavement services like crews. We may even signpost back to the patient's team, their best place to answer questions about a patient's individual circumstances. Sometimes this is all that is needed and listening here and being able to voice and share anxiety often helps. We have many calls of this nature and I have to say that mostly by the time the caller hands up they feel more in control and with a bit of a plan to move forward and they always know that they can call us back again should anything be playing on their mind. I hope that was interesting and I've got another case study to reflect upon in a wee while but back to the impact myeloma and amyloidosis has on everyone affected, focusing on the carers. So a diagnosis of myeloma brings about many changes. It changes everything. We're often discussing with patients and with their loved ones how their lives are different following a diagnosis to what they were before and there does need to be a period of adjustment. There's almost an immediate psychological impact for all involved and of course that experience for the patient is hugely influenced by who they have around them supporting them. The diagnosis not only has an effect on the patient but the well-being of those close to them is also impacted. It's so important to recognise and acknowledge this and have resources in place to support everyone affected. Throughout this talk I will be referring regularly to a piece of research carried out by myeloma UK called a life in limbo which provides key insights into issues experienced by carers. Here we have two quotes taken directly from that publication which mirror many of the conversations we experience via the infoline and the ask the nurse service. I'll just read those two quotes out to you. So sometimes it's like you're invisible. Of course it's all about the patient but at the same time to have a little bit of support would be nice. You're trying to support them and your heart is breaking too. Living with myeloma and ALM elidosis is therefore often extremely challenging physically and emotionally for patients, carers and family members. The study a life in limbo was conducted between May and June 2016 and it was designed with the input of carers and involved a survey of 374 carers and second stage interviews to explore issues in more depth. So this slide explores the changing roles that carers find themselves having to deal with. Often the first time someone hears the word myeloma or ALM elidosis is when the oral loved one has been diagnosed. Carers find themselves in a situation of great change. They must learn about a disease they have likely never heard of. They must become familiar with its potential complications with treatments inside effects and they find themselves thrown into a world of hospital appointments dealing with healthcare professionals and witnessing someone they love in pain both emotionally and physically. The burden can be initially overwhelming and can cause huge turmoil affecting relationships and day-to-day life. Often our search users voice anxiety around the support they provide to their loved one. Are they getting it right? Is there anything else they need to know to do and how can we help them with this? So looking at the carers role. So we know that carers are often completely unprepared for the new role in which they find themselves but it becomes clear very quickly that the diagnosis of a loved one will impact greatly on their everyday life. They may find that work suffers as a result or they may look at changing their priorities around the patient and their work life. It may be that they find themselves to be the main earner in the family. Social activities can be impacted, friends lost, hobbies put to one side and daily tasks can be neglected. Often carers own health issues are ignored, played down or overlooked. So all of this of course can be a huge cause of stress and stress is a major factor when looking after someone with myeloma or a lamyloidosis. Challenges which weren't expected which were unforeseen become a dominating part of day-to-day life and of course we know that stress can cause physical symptoms and if a carer becomes unwell then who will look after the patient? The changing roles, the burden of responsibility can often have a negative effect on all areas of life such as described on this slide. So here are some further statistics taken from our report A Life in Limbo around the concerns reported by carers. You can read this document on our website. It is from 2016 but we do have plans to explore further research in this area so carers needs are something we do take very seriously and as an organisation we will always factor them into our work. I'll just read out these stats here. So from that report we heard that almost three quarters of those who provided care and support to a relative or friend did not see themselves as a carer. The term carer is a bit of a strange one. Often we'll hear people saying well I'm not a carer, I'm a wife, I'm a husband, I'm a son, I'm a daughter but you know we would call them all carers. Four out of five carers always put the needs of their relatives or friends before their own. We hear that very commonly. Over half of the carers often felt that they didn't have anybody to talk to. Such a shame. 94% of carers are emotionally impacted and found the uncertainty to be a major factor and a quarter of those set in work said that they'd been unable to work or had to retire early to care for the person. So I'd like to explore another case study if that's all right. I do think that sharing experiences and you know these are absolutely invaluable. These are actual studies from actual calls or actual emails so I do hope you find them interesting. So this was an email which came into our Ask the Nurse service initially and it was immediately followed up by a call to the myeloma infoline. You'll see this query is quite different from the previous one we talked about and it gives you an idea of the range of calls and issues we deal with and the complexity of those. So again have a wee look and try and think how you would address the very complex issues faced here. So the email came from a carer. Her husband, young husband to be diagnosed with myeloma in his 40s. We know that myeloma is generally diagnosed in those who are older. He was put forward for a clinical trial, the myeloma, the muk9 high-risk clinical trial and there was a bit of confusion about the bone marrow biopsy results and the cytogenetic risks, the status of that. So the email was sent and the next slide shows you the email and our reply but within seconds of the email being sent she called the infoline and actually it was much easier to talk to her on the infoline and it did clear up a few issues that we had being unable to see the patient or the notes. So this was the email that was sent immediately prior to the call and you can see it's very complex and this is why it's really, really important that the myeloma information specialist answering the helpline, answering emails are really up to date with the world of myeloma, its latest treatment and care. So we've ensured that that happens. So the lady was confused because one bone marrow biopsy result showed that her husband had high risk cytogenetic abnormalities and therefore fitted the criteria for the trial and another doctor said that no, he wasn't high risk and therefore would be on standard treatment and not eligible for the clinical trial. So she was very confused. This is my reply, I've just copied you in the whole reply taken out in people's details so that to maintain GDPR. So whenever we send an email from our Aston North Service we make sure that they're reviewed by at least one other myeloma information specialist and for this email I worked closely with our patient advocacy team. I also worked closely with our senior scientific and knowledge communication officer to form a response. I don't really think I could have replied to this email without that help. So I've offered some some reasons why there was a different report but obviously I can't say for sure as I don't have access to the clinical notes and I'm not looking after the patient so you can see that was quite a complex email. So the challenges of this were that clearly the service user was very well informed, very knowledgeable, had done a lot of treatment and was also extremely anxious. She did say that she was prepared to buy any treatment. She had kind of fixated on the fact that the trial included a maintenance arm of Lenora Ledemide and she had read that that was the way to go for myeloma patients. So she kind of fixated on that. In the UK maintenance treatment isn't something that's routinely available as yet so she said she was prepared to buy it. So it was all about managing expectations and trying to alleviate that anxiety and clarifying things and when she called I was able to determine that indeed the bone marrow biopsy had gone to two different labs and the one that was being read for the clinical trial was a bit more thorough and discovered actually that the patient had another abnormality that meant he was ruled out of the clinical trial. So what I had to do in order to be able to answer this email was look at the protocol for the clinical trial, liaised with my colleagues in patient advocacy and my scientific knowledge and communications officer and then when the when the carer called it all became a bit clearer and it was actually much easier. That was quite a complex one. So to round up being a carer for for someone with a rare cancer or condition does present many challenges. Carers do need to make adjustments and look after their own psychological, emotional and physical health but it can bring about some positives too. This is my favorite quote from our report, A Life in Limbo and it's very very true. I feel angry that I'm not going to get the future I wanted but the hardest thing to feel is how my life at the moment is in limbo. I hope that was of interest and I'll do my best to answer any questions that you have. So please go ahead. Well thank you very much very much Ellen for this presentation and now I will open the floor for questions. Just quickly remind you that there are two ways to ask questions. One of them is using the microphone in your computer and ask directly to our speaker and make sure that you click on the right hand button so I can unmute you before asking your question and the other way is as we mentioned before sending your question in the chat window and I will read them for you to our speaker today. We've had some questions arriving during your presentation. The first one is I've read that patients and carers have the same feelings and the same emotions around the disease but only with different intensity in different stages of the disease but both patient and carers feel the same anxiety for your helplessness. Do you agree? Absolutely that's all very true and it is a life-changing event it's almost a bit like you know when you're diagnosed with something that you've never heard of before it's a bit like post-traumatic stress and you go through a whole range of emotions but we often we know that often the carers sometimes have a bit of a harder job because they take it upon themselves to become fully informed about the disease, they take it upon themselves to know when the next appointment is, they take it upon themselves to know what the blood results are so they're fielding questions from relatives, supporting their loved one and trying their best to behave as normal so yes it is very complex and this is why it is so important that the carers' needs, carers' psychological, physical and emotional health is absolutely a priority but yes they all feel that sense of you know foreboding really if you like. Well thank you very much the next question is related a bit with that one it says in my own experience as a carer I think it's difficult to realize that you need help too you always think about the patient and what he or she might need and you feel that you don't have the right to complain because you are healthy and your role is basically to support the patient in your opinion when or what symptoms can make us realize that we need help to cope emotionally with this situation. Yes no absolutely as mentioned earlier that is absolutely the case and it is something that you need to be aware of carers needs I think we are getting better at it I think healthcare professionals are getting better at it I did speak to a lady on the helpline once who attended with her husband for appointments and felt completely ignored and the healthcare professionals the doctors the nurse specialists directed all of their questions at the patient and she wasn't asked anything at all but I have to say that nobody knows the patient better than the person that's caring for them if it's a wife or a husband they see them day in day out and they can notice subtle changes but with regards to your your own psychological well-being as a carer I think it's it's perfectly normal and perfectly natural to feel down to feel low in mood at times however if that is something that's prolonged if you don't feel that that that it's getting better when you're becoming informed or if you don't feel that weeks down the line that your mood is improving then that may be time to to worry that perhaps depression is taking hold and we know that in order to to improve that and to allow you to take more control is the best thing you can do absolutely is to become fully informed to become knowledgeable and to know what questions to ask of the healthcare professionals often a call to the infoline or an email to the ask the nurse services a platform for for questions at the appointment and it and it better prepares you for that you know what to ask and that information is power but if you do feel that you're not coming out of that low mood I think that's the time then to think perhaps I do need a little bit more help perhaps I need to speak to a counsellor a psychologist but for me and it can be done as a team as a family thank you very much the next question is the infoline free of cost from everywhere in the world or only the UK only the UK as far as I know yes the UK and Ireland it's free to call but of course and that's why we have our email service and that's why we have our very very thorough website so if you want to speak to myself or Sarah or Kim or if you have any questions bearing in mind that we can really only speak from a UK perspective we're not familiar with healthcare systems another part of the world but if you wanted to ask a general question we do take calls international calls we do answer emails from international from people who are in other countries but bearing in mind that we can really only talk in a general sense we don't have access to notes we don't know the the as I say the specifics of the the healthcare system in other countries really thank you very much the next question cares can have problems at work because they need days days off to go to the doctor's appointment with the patient or to receive treatment to do that you need to ask for days off holiday and wait for the approval of your boss and sometimes this can be difficult how can we cope with these problems our work with co-workers as well or being overwhelmed because you spend half of your holiday in the hospital yeah that's a good one and it's one that we do get asked quite regularly as well so I think I think the key is to be open and honest from the start as we know you know not many people have heard of myloma or al amyloidosis and the chances are your your employer your occupational health department your HR HR department haven't heard of it either so I think to be open and honest from from the outset is really important and to most employers I have to say are very good and will will take things very seriously but I know here in the UK there is there is various bits of legislation that that people can turn to I'm not quite sure what's available in other parts of the world but I do think that that you know having that open and honest conversation with your employer with occupational health with HR is important from the very get go thank you very much next question sometimes that scares we have to look for clinical trials new data or new treatment and sometimes that information that we find is not very good and how can we talk with the patient regarding the lack of option of treatments or bad results in new treatments I guess it's also this question is referring to well if the care is the person who can take care of the treatment because of the age of the of the patient probably okay so and one thing I always say on the helpline is you know we when when someone first hears the word myeloma or alamelosis they are overwhelmed they've never heard of it before and then to be told that it's an incurable cancer and you're going to be bombarded with lots of toxic treatments which will have loads of side effects that that can can all be very um overwhelming but then I always try and put a wee edge of positivity on that and I say that the research for myeloma is you know it's a very busy pipeline there are always new things coming along there's always research available how you access those new treatments in that research is I'm not sure how you would go about it in other parts of the world in the UK of course we have our clinical trial tracker so patients can look at our trial tracker on our website have a look see what research is available and then speak to the hematologist so I think a good um a good question an appointment would be is there a is there a an appropriate research program that that I could take part in um it's always worth asking the question um there may be something available um it may mean traveling um but and I know that MPE for instance are a very good resource for knowing European wide what's available um I'm not sure um how people would go about that but uh but there is lots happening with with new drugs with research pipeline in myeloma so keep up to date um keep an eye on uh on the the latest information on various websites on on our website for the UK of course um and ask your ask your team ask your hematologist ask your nurse specialist uh what's what's going on for for you thank you very much um the next question do you have a support group for carriers um oh now that's a good question I know it's something that we've certainly thought about and every single info day we have we um we always have a carer session there so I know that a few internet international guests have attended our London info day for instance so we have a very big carer session there um we have a specific patch for carers which you can download from our website um and certainly looking at a support group for carers specifically is something that's very much um in the forefront of of our work whether or not it's there yet I'm afraid I'm not aware but but certainly if it's not there yet it will be in the future well thank you very much uh that was our last question uh so thank you Ellen for for this interesting webinar and just remind you all that this webinar has been recorded and will be available in the mp website which is www.mpu.org and also in our youtube channel thank you very much for being here today and have a nice evening