Recovery from stem cell transplant: meet the nurse specialist

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Where can I get episode 6 of the Anthony Nolan patient services podcast?

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My name is Caroline and I am the patient and family engagement coordinator.

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Read the series of podcast we hope to bring you insight into the experience of having a stem cell transplant.

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We'll be looking at what life before during and after transplant can be like.

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Talking to help professionals for tips and advice.

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And patients are being themselves will be sharing their stories with you.

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I hope you find them helpful and informative.

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I am doing today by Lynn Watson who is one of the Anthony Nolan specialist post-transplant nurses working at Nottingham

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University Hospital

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When previously worked as a transplant coordinator and has a wealth of experience in working with transplant patients and

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family.

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Today we are going to be talking about post-transplant care.

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What people can do for themselves after transplant to aid recovery?

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Watling advises her patients

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hello Liz

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hi, Caroline

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Thanks for agreeing to speak with me today and for being a first class of 2019.

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Can you first of all tell me a little bit about your career and how you came to be the Anthony Nolan post transplant

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clinical nurse specialist, so I've been working in hematology and specifically in and for about 25 years now. I once I

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qualified I knew that it was haematology with the area that I wanted to work in so we're lucky enough to get a job on the

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bone marrow transplant unit at work to the nearest on there for quite a few years and then became the bone marrow

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transplant coordinator.

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I did that role for about 17 years and I really enjoyed it, but we were fortunate enough to get funding from the Anthony

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Nolan to develop a post transplant nurse specialist role, so we couldn't couldn't have imagined anybody else doing it so I

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thought tooth and nail to make sure that I was the one who got it.

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So my role is designed to follow patients following their discharge from their transplant and I'm there to offer advice

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and support for patients and their families.

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As a lot of people will know the transplant journey doesn't stop once they are discharged home and it carries on for many

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many years so I'm really there as a central point of contact for patients families.

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Any questions or any concerns they could they know that they can contact me and I will either refer them on or give them

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advice is necessary.

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It's very important that they know there is somebody that they can just pick the phone up to and it will get through and

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if I can't answer their question all their concern then I know the appropriate person to pass them on to.

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Really I see it as a supportive role, and it's to ensure the patients feel that they are getting the continual care that

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they need in the post transplant.

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When do you first meet your patient? I think you mentioned that it was soon after they discharged so in Nottingham we have

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a pre transplant clinic so all the patients come along and have been for transplant. So I'll meet quite a few of them

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there, but generally it is in the post transplant period how a bone marrow transplant coordinators do all the work up for

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them and really sort of off of the carers support during the transition period and then I pick the patients up again once

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they've been discharged.

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What are patients main concerns when preparing to go home from hospital?

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I think obviously it's a very anxious time for patients and their families. They used to being in this very safe

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environment in the hospital knowing that you know a nurse or a few moments away, so actually going back out into the wide

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world where there's a risk of infection or you know they don't know what they are expected to be able to do when they are

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very keen and can't wait to get out of hospital. There is also that of anxiety about what to expect when I get home.

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infection is usually the biggest concern and it's very difficult to get the balance right between encouraging patients to

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start to leave their lives again without

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Putting themselves at risk of infection, but also allowing visitors and family members to come and see them.

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And how to help them manage these concerns particularly.

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Concerns around infection imagine living in isolation for quite a while and then suddenly.

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I'm out in there in the world again trying to deal with this.

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Yes, they were trying to reassure them that it's normal to have some anxieties. They know that we are all only just a

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phone call away the patients get rid of you. Very regularly when they go home.

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And I know that if they have any concerns at all, then they can just ring the hospital and come back in.

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I think it's about acknowledge emoov anxiety for the patients but also giving them enough information to know what's

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normal and what's not normal for them.

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There's a lot of information available to patients with throughout their transplant journey to the pre-transplant

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information that they get and then all our patients get the post transplant recovery, but when I go home which is you know

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full of information that they can refer to you as I may need to.

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once discharge that and how often are patients

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Seen in clinic review twice a week for the first month when they go home. I will transfer coordinator. See them in our day

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case unit on Monday and then they reviewed by in the transplant clinic on a Thursday morning and then we try and minimise

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the amount of times patients have to come to hospital so if they do need blood transfusions or adjustments to their

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medication, which I managed that on the day that they're coming but occasionally in that first sort of four to six weeks

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when they go home there is quite a lot of them bits back to the hospital and then after that we can normally is the clinic

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visits down to once a week to sort of the next 3-4 months and then if things are progressing well, then the frequency of

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visits become less.

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Would they see you as well then? Yeah, I mean that the morning along with the consultants and we see all the patients in

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there and then at the end of each clinic all the patients or discuss exactly what's happening with each and every one of

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the patient.

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How often do you see them? Is that every Thursday

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I'm in the clinic every Thursday but that's for patients that have been discharged from the ward, but then we've also

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developed a late effects clinic now which runs twice a week so I will see patients on Wednesday and Friday and that clinic

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and they get seeing probably either once every six months or they may progress to the yearly appointment by then.

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So we know recovery from a stem cell transplant can take quite a while. How would you say patients concerns change over

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time?

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Yet, so I think initially when patients are first discharged that they are concerned with their physical recovery and just

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getting over the effects of the chemotherapy and the actual transplant their concerns about whether the transfer has

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worked or not whether the disease is going to relax but as the time goes on and those patients start to feel better

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physically and where is about Relapse are you now becoming less to the forefront of their mind they start do have concerns

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about going back to work. You know getting life back on track really their relationships. May have changed during that

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time so it is really about the longer side effects of the transplant as well and what their general health is a like and

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maybe a few years time.

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Having a transfer obviously have an impact on patients emotionally and what advice would you give patients for a baby

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struggling?

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To talk to your nurse, they are always at the end of the phone. I think you know the main thing we want patients to do is

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to talk to someone either the first or the doctor or you know quite a lot of patience will talk to each other while

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they're waiting at the clinic to be seen they get a lot of support from each other that way.

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Really just pick up the phone and talk to somebody trying not to stay at home and worry you know even if you think it's

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you know just a silly question you know we're here to answer that there won't be any question let you know we haven't

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heard before all that we can't reassure them. It's normal to feel like that.

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Everything I think that's really important. Is that because it is such a long recovery after transplant. It's very

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important that carers and family members get support from others as well. I know that the Anthony Nolan website and forums

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available does offer a lot of support for patients and family members and I think you know it is important that we look

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after their family members as well, so that they can continue to support patients through their recovery.

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And what about support for patients that might need help financially or perhaps and getting back to work?

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A lot of patience really struggle financially as a sort of said you know the transplant journey is a long one and it could

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be 6 months before patients are thinking about going back to work and it may not be possible for them to return to the job

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that they were doing before they had the travel and there are a lot of charities that are able to offer advise the

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Macmillan website and advisor.

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Obviously the Anthony Nolan and then there's a charity that I know the Anthony Nolan work with cold working towards

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well-being which will offer one-to-one service over the phone to support patients getting back to work.

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Sometimes it can be difficult to talk about side effects such as sexual dysfunction. How do you approach this with

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patience and what advice can you give to them?

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Obviously, this is a sensitive area and not all patients or family members and Partners want to talk about it.

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I found the over the years of you know this is something that we help professionals should.

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Bring up and discuss with patients and ask if they've got any concerns. I think unless we address that or discuss it

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patients are going to bring up any concerns or worries that they have that was to encourage patients to let us know I know

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that since I've been doing this role. I have found that more and more patients are experienced and

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Dissatisfaction and this could be sought from a lot of confidence loss of desire loss of libido and it may be that you

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know patients just need to have the opportunity to discuss this rather than having to be any medical intervention

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sometimes. It's just a case of acknowledging that you know there are some concerns there.

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Understandable and obviously transfer will affect the whole family especially carers and children. What would you say to

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them about?

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how to look after themselves and what support they can access

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So again, I would feel that it's part of my role and the team at the hospital role to support both the family members and

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the children I think with my experience what I found is that children like a routine they like the normality so if you're.

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Parents are able to continue their you know the usual role of getting them to school all the after-school activities and

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that's brilliant.

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I also think it is important that children are.

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Told about how difficult it is after the transplant and let you know although their parent may look the same. They will

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still be struggling to do all the things that they used to be able to do with that. It's going to take some time for you.

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No mummy or Daddy just get back to me and fulfill that role again and they used to.

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and can you tell me about your prehab and rehab programme in Nottingham

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so our rehabilitation program has been running for many many years in Nottingham

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and

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Quite unique in its nature it is for any patients that had a transplant. They're invited to attend and this program which

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is a 10-week program and it is an hour of individually designed exercises for patients is a bit like a circuit class. So

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they have about 10 exercises to do with lots of.

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Allocated throughout the first hour and then for the second hour they get rewarded with a cup of tea and then each week a

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different Healthcare professional comes down and leave some discussion service physios, we'll talk about fatigue and

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regaining confidence and strength we have.

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The social workers will come down people from Maggie's come the dietitians so we have a whole source of wealth of

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experience that come down and that is sort of a group led by encourage patients and family members to sort of exchange

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tips and ideas of how you know how they continue to.

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Recover really and during that time patients are assessed to see what the fitness level is like before the program and

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then we assess them again at the end of the 10 week.

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Turn off after 10 weeks. They are you know how much fitter and stronger and more confident in their daily activities.

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Our program is a relatively new program or they think I've been running for nearly a year now. So not that new and again.

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This is an opportunity for patients coming in for transplant to come and meet with the team. So they transplant

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coordinators leave the session and there is a physiotherapist and our psychologist in the room it held twice a month.

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And patience come along and we talk to them about what it's like to be coming into hospital. What side effects are likely

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to get during the transplant.

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And then psychologist obviously talks about how to cope with being in isolation or the side effects and symptom

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management.

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And then the video gives advice on how to say that soon as possible whilst you're confined to a single room and obviously

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never trying to prevent.

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Some infections or complications arising we feel that the more information patients have coming into a transplant and the

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more information we can give them but how to stay well that will enhance the recovery and hope you make a better hospital

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inpatients Day 4th.

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Fantastic program, they can attend host of health professionals are there for giving advice at the same time in one

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setting yeah, that's right. Yeah.

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Going back to your later vetsklinic what kind of late effects do transplant patients tend to experience of how far down

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the line are we talking so in the clinic? I have found it quite a lot of patients have developed high blood pressure so a

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lot of patience. You know when I've had their blood pressure checked. They were discharged from hospital in I know that

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maybe some clinics do blood pressure tablets have patience comes to the next. It's not something that we've done in

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Nottingham so that's something that I really found.

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We advise them about healthy heart healthy diet. You know we want to encourage patients to exercise and to really look

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after themselves as much as possible unfortunately had chemotherapy and I've been through transplant. You know the chances

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are that there will be some longer lasting effects so if patients can do everything they can to optimise their health and

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make sure that they are general guidelines about you know the exercise and diet making sure that they eat lots of fruit

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and vegetables and really looking after themselves then that will minimise the effect the transfer and chemotherapy that

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had.

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this leads on to my next question why is post-transplant care such a vital part of Recovery

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So obviously patients are surviving longer and longer after the transfer and now which is excellent but we want to make

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sure that patients know what symptoms to look out for to maintain their health and well-being you know if they recognise

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symptoms early, then they can come to the hospital or be referred to the GP so there any complications that may arise can

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be seen and is sooner rather than later.

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What is the part?

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Love your job that you love the most. I love the fact that I get see the patients from the start of their transplant all

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the way through you know I've built up so amazing relationships with patients and their family members and have you known

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some of these patients for over 20-years now and it's that relationship that you build with patients that you know is very

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rewarding and something that and the reason I've stayed in haematology for so long.

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my final question today

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YouTube is incredibly busy and I would imagine quite emotionally challenging at times and what do you do to unwind and

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look after yourself, so we're very fortunate in and we are a small team and everybody is very aware of the challenges and

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the struggles that we have so everybody is very supportive of each other I think because we do get to know the patient so

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well. We all know what everybody is feeling or going through.

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It brings a lot of happiness a lot of the time in the in the transplant clinic and you know that that's what we focus on

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is the leader of the successes and the long-term outcome of patients. I won't deny that there is a glass of wine at the

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weekend are often helps and why.

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Thank you again for speaking to a stallion. It's been really interesting to learn more about your work and I think what we

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talked about. It will be really helpful for patients and families after transfer.

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Information on recovery as well as free resources that you can download an order.

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You can visit our website www.org and take a look at our patients and families page.

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We also have an online forum you can join that allows patients and family members to speak to each other.

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advice from transplant recipients Who been through the process

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define up to the forum, please visit www.samsung.com

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forward slash forum

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We also offer a peer support telephone service where you can speak to someone who had the transplant at least 2 years ago.

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If you'd like to find out more about this and other ways we can support you and your family, please contact the patient

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services team.

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patient info at Anthony Nolan

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0303

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303

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03030 app

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