 We were both asked to talk about nursing and I decided that Laura is the expert on side effect management. I would talk more about nursing as a research nurse and improving outcomes. I'm going to give you a talk about experience in the UK and what's happened in the last Yn 2001, ydych chi'n 4% o'r cyfnodd yng Nghymru yn y Llywodraeth Cynlluniaeth, ac ymdeg yr ymdeg 5% o'r cyfnodd yng Nghymru yn y Llywodraeth Cynlluniaeth. Yn 2009, Y Llywodraeth Cynlluniaeth Cysylltu Rhyw Llywodraeth Cynlluniaeth llwyddo 33 cyfnodd y Llywodraeth Cynlluniaeth yn y Llywodraeth Cynlluniaeth. Yn y rhaid yna ddim ymdeg, mae'n fawr o'r cyfnodd cyfnodd. Yn y tîm mwylo? Felly dyna'n meddwl, mae'n rhoi o'r cyfnodd cymryd ymdeg arall, ac yn gweld yn y rhan o'r cyffredinol, mae'r fawr yn y Llywodraeth Cynlluniaeth, yn y Llywodraeth Cynlluniaeth Cynlluniaeth, ac yn y Llywodraeth Cynlluniaeth. A dyna'n rhaid i weithio i'r ffiannig oherwydd i'w ychydig o'r amser o'r mynd i ddim yn ddechrau'r 100%. Mae'r dweud y gwirionedd aeth wedi'u gweld y gallu yn yr ysgwrdd, ond nid i'w ddweud hynny'n mynd i'w gwirionedd. Yn ymgyrch yn ymgyrch yn cynllunio ymgyrch, a dyna'r pethau ymgyrch yn ddefnyddio ymgyrch yn cynllunio'r ymgyrch. Felly, gallwch chi'n gweithio. Rwy'n hoffi'r ddweud bod yn ymddur gweithio'r ymgyrch yn y rydyn ni, Ymgyrchyniad yw'r cyflwyno'r oedd y drudio'r drudio'n gwybod. A oeddwn ni'n gwneud y drudio ar gyfer y cynlunio ac yma'n gyflwyno'n gwneud. Rwyf ni'n meddwl o'r gyfer ymarfer o'r cerddau hefyd? Rwy'n cael ei wneud? Rwy'n cael ei bod yn ei ffrwng ar y cyflwyno. Mae'r ffynol o'r website. Ond mae'n ddweud yn y dyfodol, a rydw i'n fath o'n cyfrwng. Mae'n ddweud o'r ddyf yn ddefnyddio'r cyflwyno. ond mae yna cynhyrchu i'r wneud yn adroddau, ac mae o'n gyfodol y US storio'r adroddau, oeddiw'r cymwyno yn gweithio'r trylech Efallai yn Europa色adwy fwyaf o'r cyfdweith ac efallai oeddwn yn cymhwysig o'r wedi gwneud a oedd yn adroddau erbyn yw ar gweithiol. O'r gwroddau i'r cyhoeddi, oedd yw'r ydych chi'n gwirio amser dyma yng Nghymru. Ie flwydio'r cyfnod i'r unig iawn, ac yn cael ei ddweud o'r newid ymlaen. Mae ydych chi gwybod, ac yn ddweud i'r gwaith mae'r ddweud i'r ddweud i gael gwybod i ymddangos. In the UK we've got multidisciplinary teams, and I know in Europe that's very common as well. There was a study done by McNeil in 2008, and he asked the question, did multidisciplinary teams increase the enrollment to national trials? And his findings found that 85% of patients who were recommended for trials were screened. 66% of the not recommended patients were also screened. And 65% of the multidisciplinary team recommended were recruited. And only 49% of the non-recommended were recruited. So I think just talking about studies in the MDT, looking at patients, recommending them, have helped other patients as well that are not always recommended. There was a recommendation from this that national trials should be flagged at all MDTs for two reasons. One, it allowed clinical trials nurses to an easy and quick means to identify patients. And it prompted members of the MDT to discuss trials with patients. So how do we communicate that with patients? And I think every level communication is really important with numerous patients, with numerous people. There's the patients and the relatives. And as Laura said earlier, patients taken as about 50%, I think it's probably less of what you tell them. And they're there for their treatment. Oncology teams, I don't know how much they take in, but probably about the same 50%. You sitting here today will probably take in about 20% of what's been said. Investigators and their teams, and I think more importantly, the GP and the community team are becoming more and more involved in the care of people that they need to know. And I think it's very difficult for GPs to keep up to date with everything that's going on, not only in cancer but in hypertension and diabetes or whatever it is. So it is good communication. If you can get hold of that GP and get him to listen, then we've scored. I think you've also got to communicate with the sponsor. And the two-way communication between the sponsor and the investigator is really important. From the very beginning, from the time you design the study, I think we should be more communication with the investigators early on and maybe give the research nurse a chance to read the protocol before it's finalised. I'm doing one at the moment and we're asked to do the patient's weight every time they come, and I can understand that. But why do we have to measure their height every time they come? But that is in the protocol. They want their height. And so far, so good, I haven't had any patients that have shrunk and I haven't had any patients that have grown. But it's things like that. And because we do those blood pressures, those temperatures, those heights, those weight, it's something that we look at as nurses when we look at protocols. We're not actually interested that much in how the molecule affects whatever, but we do look at the practical things. And asking for blood tests 16 hours after you've given a patient a drug which works out to be four o'clock in the morning. It's things like that that need to be pointed out before the protocol's finalised. So listen to us, let's communicate together. Jenkins and Fallofield did a study looking at kidney cancer UK training programme on how to improve healthcare professionals communicating with cancer patients. And after eight hours of training, most people improved their skills and were more confident in speaking to patients about randomized clinical trials. I think it's probably one of our big challenges as nurses explaining randomized clinical trials. I think the worst one is blinded, randomized clinical trials. But patients do need to understand and maybe sometimes have it repeated several times. Sometimes the physicians also need to remember that trials are randomized and to let patients know. So networking, education meetings not only fulfil educational needs, but they are also a good way to meet colleagues. Today being a good example, I've met some colleagues that I hadn't met for several years in the audience and it was nice to catch up and know that they were still interested in real cancer. Interest groups, as research nurses, we have our own interest group and also attending MDTs. Information giving and informed consent. I think the challenge to give patients information is getting bigger and bigger. Patients want more information, it's quite important to them. But the patient information sheet that we give out to them is getting bigger and bigger. Patients are actually starting to object. So for sponsors in the room, please note, bigger is not always better. At Echo last year, patients actually made a complaint about the fact that they are fed up of reading big information sheets and the other thing that I've got fed up of doing is filling in 10 pages of quality information. And the other thing that I've got fed up of doing is filling in 10 pages of quality of life. I think we seem to have decided what patients measure their quality of life with. I don't think it's always accurate. And at that same patient meeting, most of them said that the thermometer of saying, how are you feeling today what's your quality of life market of 100 was the best way of making their assessment. So maybe we're going too far. Communication, you know, this is a global country and I think we have more and more non-English speakers in England and the same in France and Spain, you don't have Spanish or Spain. I think we need to address the idea that patients do need to have information in other languages and that people do have learning disabilities and that we shouldn't bias against them if they want to take part in a trial. So there's different ways, things like CDs, videos, audio tapes that may help patients make decisions. Think of trials nurses, what do we do? I thought for the people in the audience who don't know, I'd let you know. We give information, we gather information. We ensure that procedures are actually done. We're contact with the patients and for many of those patients we are their key worker and we'll have more contact with them than the primary physician. And really maybe this one should have come right at the top, the safety. We try and ensure that patients are looked after safely because that is the key, at the end of the day a clinical trial is this drug safe to give to patients and can they tolerate it. Obviously there's source documentation. But what do we need? I've talked about early involvement already. Attend investigators meetings, be allowed to be released. I know of several research nurses who are not allowed to go to investigators meetings because it's deemed that it's for doctors and not nurses. So plea to anybody that has got any clout, that's not true. Questionnaires, regular meetings with the investigator. I think it's one of the key things that I enjoy about my job is that we're a very tight-knit team and I know Laura is as well with Brian that we actually have access to the investigator to discuss what's happening. We need more data support. We need more clerical assistance. I'm looking at my boss now so that he can hear me. And we need time to be with patients and by having data management and clerical assistance then we do have make the time to have patients. So recommendations. MDTs should ask why the patients should not go into a trial rather than should they go in a trial. Mandatory communication training for old staff involved in clinical trials. To have more nurses. To have more patient contact, sorry contact with patient groups. KCA is excellent. I always try and promote KCA when people say well who do I contact. And use of the internet to promote trials. So that's my talk about research nurses. This morning we had a nursing symposium and nurses were invited from many, many part countries in Europe. Unfortunately we had very few replies received and so we thought what we're going to do with this time and so we actually had a session to discuss nursing and patient education needs in Europe. And it was very productive. We've got lots of ideas of what could happen. I think one of the things that we've discovered that nurses in Europe are now sure in the US things are getting tighter and tighter. Trying to get time off to come to meetings like this one is actually much more difficult. Getting sponsorship from pharmaceutical companies is also getting much, much tighter. So to be able to come to sort of meetings we actually need to try and motivate nurses into it. And one of the things that we'd like to do is ask you physicians to motivate your staff and your nurses to come to that. But it became very aware that we actually need to know more about what's happening in Europe about nursing. Because every country is slightly different and I think that's one of the challenges that we meet. That we don't really know what's happening in different things. So I've got a few questions. So if you could all get out your things. The first question was we wanted to know where you're all from. Now we were going to ask this question this morning but it got stuck. So now's your chance to let us know where you've come from. So if you'd like to answer now can we have some music? OK, so the UK is heavenly Western Europe so it's a quite good mix what we'd actually expect. So now I know that. Who provides detailed treatment education to the patient in your clinical setting? Is it the physician? I know in some countries it is the physician and the patient makes it. Is it the physician and the patient may never see a nurse? Is it the pharmacist that the patient goes and collects the drug from? Do they go through side effect management? And again that's happening more and more. Pharmacists are taking on much more information giving. Or is there another way that you get treatment education to patients? So on your keypads vote now. So that's great. More nurses are actually more involved. What we try in our institution is to be a joint approach that the physicians will speak to the patient and the nurse will either be with them or coming after to go over that and give written information to patients. But I say I know pharmacists are doing a lot more. And my last loaded question is do you think there's a need for additional nurse education in kidney cancer? Because I think that's one of the issues that a lot of nurses are urology nurses that are looking after kidney patients when their workload is probably mostly prostate bladder testis. So are we actually educating our nurses enough? If we are and you think that then it will make our life much easier. So if you'd like to give your answer for that now please. So everybody here in the room thinks that we should be giving more renal education to nurses. So I'm going to encourage you all that when you go back to your institutions that you speak to the nurses and find out what they'd like to do if they'd like to contact kidney cancer association we'd be really keen to hear what you would like and how you'd like it given because there's so many different medias now to be educated. But I don't want to lose coming to meetings because I actually think networking is one of the best ways as nurses that we can learn from each other and by learning from each other we can actually help patients with kidney cancer. Stay on drug. I think that's the main thing to say. Thank you very much.