In the latest episode we spoke to Haematology Counsellor Shelia Hegarty about her role supporting transplant patients at University College London Hospital. We discussed the huge emotional impact that a transplant can have, and how patients can manage their well being and when to ask for further support.
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Welcome to the third episode of the patient services podcast at Anthony Nolan my name is Billy and I'm the patient
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communication and insight coordinator.
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This series of podcasts we hope to bring you insight and support into the experience of having a bone marrow or stem cell
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We'll be looking at what life before during and after transplant can be like talking to health professionals for tips and
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advice and patients have been there themselves will be sharing their stories and personal experiences with you.
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We hope you find them helpful and informative.
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today I'm joined by Sheila Hegarty a haematology councillor working as part of the haematology psychology and counselling
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team at University College London Hospital
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Having a stem cell transplant is a life-changing event and dealing with it impact on your everyday life can be a
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The emotional rollercoaster often described to us by patients to contact Anthony Nolan can be really hard to navigate
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without support and guidance.
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Today's Sheila will be talking to us about her experiences of supporting the specific patient group and giving us her
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expert insight into the psychological concerns experienced by transplant patients hello Sheila thank you for speaking with
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us today. It's very generous of you to give up your time for Anthony Nolan
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Can you start by telling me how you came to specialise in counselling for haematology patients?
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Sure and I'm very glad to be here to talk about this. Thank you for inviting me. I've been working at uch for 12 years and
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when I started I was the only.
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counsellor working in the department in haematology
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Part of my role, I was asked to come to develop the role within haematology across inpatients and outpatients and right
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through the journey. So that's happened to us. We have a much larger department we are four in the team. So we have three
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cancers one psychologist and a couple of trainees always there as well and I think that reflects the complexity of people
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are going through and the growing needs for the Liverpool yeah, yeah.
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Are there any common psychological issues or concerns you've noticed in those patients that you see who go through
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transplant I think.
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the most important thing to say first is that this is a huge and daunting experience for most people going through it
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absolutely it comes on the back of having had a diagnosis and and a lot of other treatment and then facing this is
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daunting and it's huge, so it's very natural and
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Normal to feel a lot of things of the feelings I T to feel worried to feel low have a range of emotions really.
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Which people experience and which are common to most people that people will experience them in different ways at
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different times across that that journey really from diagnosis right through treatment and a specific concerns about.
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the transplant process or elements of the transplant that you find that the patients you see
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I want to talk to you about
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Very very much from person to person which again is human really isn't it? But I think they range from people being very
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worried about the treatment itself and the impact of that and people are told by clearly. I know by by the medical team in
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advance that they are facing a lot and that there will be side effects so people are aware of that and worried about that.
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There are also often worried about family but partner's children.
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And so are very aware of trying to protect them as well.
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The people are mainly concerned about getting through this about knowing this is going to give them a chance of life of a
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cure and so they want to do it but also wearable.
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goes with it so I guess in the beginning is often a lot of
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Worry but also hope about this will be.
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And so I think that changes along the way.
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At different times and at different stages in the process.
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No worries will be different at different times.
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Is there a time in the process via pre during or post transplant that people tend to need the most support?
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I think that fairies again as I said from individual to individual but I think one of the things that can surprise people
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quite a lot is the post transplant we get a lot of referrals and that's open when people need most support ok because
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although the beginning of the process is shocking they've been through diagnosis tonight facing this extra treatment.
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they're kind of
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You're on a journey really that kind of told her they have to go through there weather going to be in hospital. So they
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hopefully make preparation for that answer his staff to clinical nurse specialist and someone will help them with that so
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that is its own challenges and then people are going through it getting through that.
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When they leave hospital after a long period in a can be weeks can be longer and going home when people.
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Relatives friends are very excited. I'm feeling coming through this is really good news and actually they're trying to
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readjust to pick up the pieces of their life 024 - 4 - life and I can be a very different experience often and I think
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that's one of the things that people aren't prepared for ok.
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I think it can be quite difficult to prepare people for that and so they come to you. So they can be quite ready for it.
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Anticipate impact it might have some kind of come to see the medical term for the clinic check-ups to and talk about those
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kind of things that are still going on maybe long-term fatigue may be feeling that just having the energy they used to
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have feeling still on well settling to perhaps a different way of life. Not maybe being at work exactly not being off work
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to look after their children themselves in the same way yet, so a long stage of recovery and I think a lot of a we can do
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that is really put that in perspective and help knowledge that this is really difficult but actually they can get through
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it and that it's new it's different and it will be a different kind of a new normal really as we call it. Yeah, so that
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would be when we
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A lot of people would come into our service and have some work done then, but we also see people in the beginning some
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people might be most anxious.
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Is very kind of coping mechanisms for anxiety coping skills, so that's one of the ways we be helping people prepare in
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We also see people on the ward when people might be ill.
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Worried about family or bored or stuck in there and feeling isolated in a room on their own so we be helping them through
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that stage as well and of course also see family.
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that was my next question actually, so do you see both patients and family and you know if you do see family members what
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kind of issues and concerns to find that they have in comparison to the
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We do see both we offer.
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We offer service to both sometimes we see people together with couples. We might see people with their family in their
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family set up with children and
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there's a kind of bit of mutual concern from the patient and the family for each other so
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The patient will also be that will often be very concerned and worried about their family members their children perhaps
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their partner as well as their own individual worries, but then also the relatives.
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You know the partner the parents the children will be very worried and will not want to.
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Put anything on the patient but also find it quite difficult often to express. What might be going on for them because
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they just want to be there for their loved one really so they'll be talking about their own.
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But also there their personal and the person who's the patient their worries and part of the work. We would do that would
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be kind of illicit from them have their own worries or how they see the future the impact on their life. What's the
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weather like on the patient because it does have a really far-reaching impact and that's something.
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You know with the work that we do with distance to try and prepare them to understand that the support network is
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incredibly important to a patient.
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And so do you routinely see patients pre transplant?
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Not routinely, I wouldn't say although I think it's something that increasingly becoming evident is quite important
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because although people are given a 4.
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What to expect I don't think they're quite given a full.
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Picture of understanding the psychological impact on the emotional impact on them you know of being isolated and I've how
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they can build on their own existing resources right to get into that. I thought I'd like to do we have done a survey with
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our patients in uch people were post-transplant and white post-transplant people at different stages and one of the today
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felt was really large. He said he hasn't been emotionally and psychologically prepared enough physically they felt they
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had but not psychologically they felt it would be helpful so it's something we're working with the team to try and see if
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we do half a day that would be very helpful very helpful and have a bit of running time to a transplant volume to do that
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and I think it could help people build on their own resources and
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Prepare themselves for what's ahead and take back a bit of control of it in that sort of preparation, so psychologically.
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I think some of the definitely something that didn't work we do with patients that people often to say as you just said
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that they didn't feel psychologically prepared and that's something people come to us with also.
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Because I think as you say that lack of control is something that very big and people will be out through that process and
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to just have some charge of something yeah is so helpful Foundation exactly.
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Can you tell me what kind of local support?
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You would refer your patients to.
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I think that's a good question because we
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I work in central London with a very well resource centre. We have patients coming from a long way away.
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And stay with us, they have a good service with lucky really off and people going back home.
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It is more difficult to have to say now we as a team carry on we will have to telephone sessions with people so we can
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offer that the other thing we look we look for people.
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Services and Resources locally there may be support groups in the local area. We would liaise with the GP if we felt that
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was important. So we will do that. Play some work. I look about the services for people. It's not always easy. We yes.
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We're on a support group for all haematology patients, so we don't specifically have.
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bone marrow transplant
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Support group but we have a general one which covers all haematological conditions and we meet once a month for a couple
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of hours and then the group themselves go off and have a meal afterwards which is it means for them. They have people who
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understand to talk to and then they go off and do something social but from within the resort you know connections are
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and people can really link up and
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Have very useful conversations and help each other with different resources that they have used themselves to get by and
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so how does it work having he say it covers the broad spectrum of haematology does it work quite well having tried some
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transplant patients. I'm not transport patients in that.
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In my experience, it works very well sometimes people want something more specific so we might have somebody in on that
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particular issue, but usually it works well and people mutually supportive facilitating at but it's very much about mutual
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support and so people have a more chronic condition.
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May be very helpful to people having more acute where they can kind of see each other's perspective and gain from each
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other. I'm certainly I would say.
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Friendships have built up out of that and a lot of respect for each other's position and the kind of greater understanding
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of the fact that they can be different difficulties but humanly people can each other.
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And do you think everyone having a transplant should have access to your kind of support?
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A lot of people don't need our support.
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But I think the fact I think people should all be aware of it.
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And I think the most important thing really is to let people know that it's as I said earlier on.
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It's very natural and normal to have.
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a lot of feelings of anxiety fear worry
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Etc going into the process like this.
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And so the people are ever so kind of becomes part of the conversation that that makes it acceptable to support. It's ok
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to ask for it. It's ok to say I'm feel this thing. I'd like to talk to somebody that becomes much more as natural really I
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seen the doctor yet as natural as having your nurse as natural having a temperature done if this is something that spot
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the process as well.
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Why do you think if you come across this is all? Why do you think that some patients or family members are reluctant to
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access psychological support is something we experience and I think.
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for a lot of people coming into this they would never
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Really good nearest psychologist or counsellor, so for them it may mean something like.
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What's wrong with me? I must have mental health problems and stigma.
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So we would often like to see people just too kind of in the beginning explained a bit of our service but saying initially
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a chat and people will often take to it is something people worried not going to be as a patient I want.
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Experiences once you get over that barrier people really do use the service very well and see as a talking coping
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definitely fancy. It is adding to their toolkit really of resources on their own.
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alarm going to be more autonomous and more independent cos I can build up their own resources and from the
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Relative for family point of view I think they're just so.
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Holding everything together for the patient and worried about if they start talking about Monday open up and will there be
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hope there's a lot of responsibility and onus on the person who is until you have to keep clearing definitely yeah, so I
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think we would be very aware of that working with people that we would you know want to support them and ignore them
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together and do a lot on their plates as well, but they have to take care of themselves in order to achieve that yeah,
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What advice would you give to patients who are about to go through or are going through a transplant about supporting
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I suppose for me the most important thing to do is say that this is your time and you really have to look after yourself
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for a lot of people.
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I would say I'm I'm being selfish.
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I need to be somebody who generally look after other people or I don't want to put this on my family and I would say this
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is important. You have to look after yourself right now and be kind of if you like selfish about that because that's the
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only way you're going to get through this and that's actually helpful for everyone and it's most helpful for friends and
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family to know how they can be helpful so the more you can let people know what helps me.
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Send them or other people like that and want to help I don't really know what to do. I think.
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I always work with people in terms of their own, but I called toolkit of resources so helping people whatever that maybe
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Don't come through adversity in the past it may be that they enjoy.
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I don't know gone for a walk reading music so any of the things they enjoy building on that offers enjoyable about that.
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What can you use from that to get yourself through this time?
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Being aware that they're going into a room for a period of time in hospital bring with you whatever might be comforting
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whatever might be.
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Supportive be very clear as well.
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Really you're going to be not well for a while and you need to look after yourself and let people know that.
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you can let them know but the
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Play demands of you so people can find it very difficult to do and I know for us we often come across people of any state
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Stewart transplant without has to be reiterated really and again have they got yeah? Well, I suppose you know when people
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have a diagnosis. It's a huge shock as you say and then often times they move into transplant quite quickly.
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Before any of that happen to them they had a life and they had responsibilities and they had a role within their family
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within the workplace and it must be so difficult so let go of all of that but as you say the focus needs to be on them
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getting better and there is an acknowledgement in that is what you said isn't there of the loss of that I hope you lot of
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that comes back. I'll be at maybe a different way. X
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But there is a loss.
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Change under some importance does a lot of important thing about acknowledging that.
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And helping them so that they can also get through this and they have a huge amount of resource.
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That can be that would be hugely vary from person to person, but there's no rule book for this.
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Is very much about what helps you what happened to you when it's difficult.
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Let's build on map.
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How essential is your role in post transplant recovery? I think a 2G sensual I mean I've certainly.
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Had a referral for example for a patient who was 6 years post-transplant local importers of was he was having someone
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going physical difficulty but that had also impacted on his life now broadly and on how he felt about himself and that was
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you to be important and we did some really valuable work together which he certainly has acknowledged so I think.
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It's almost as I said earlier. I think it's almost at that point that I feel worse most the most used yeah, because that's
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the huge adaptation to a different life and I think of someone diagnosed initially does the shop.
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when does getting through the treatment and supported in that by the medical and nursing staff and then is afterwards and
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1-hour what? What do I do now and it said that stage that mentally and emotionally people are beginning to process? What's
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happened and kind of moving from a shock to who what was that all about?
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I'm really being aware of the impact cause.
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cost of diagnosis and
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Discussions about treatment, it's all about getting through this and living but later on as well. How do I live and what
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What is minute I'm like and how do I manage that and just kind of I guess letting the plate settle after the earthquake
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really it feels to me after it was a bit more space for that. It's kind of like the mind has had a time to catch the body
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has gone through really yeah, I suppose there are some people who live with.
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chronic side effects such as chronic fatigue and he said physical symptoms and so there is a huge period of adjustment and
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you're suddenly away from the hospital and away from all of the set of support and
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People to talk to you, you haven't those earliest ages so I can really see how post-transplant is it's really essential to
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Babies people like yourself that they can access to begin to build up confidence again in the fact that my confidence in
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your body in your life in the new way and even with side effects.
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Graft versus host disease the different things people may experience even with that actually I can work this out and how
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do I do that?
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Thank you so much for speaking with us today. It's been really interesting to hear more about the work that you do. Thank
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you very much for inviting me. Thank you.
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Before we sign off. I just want to tell you about some of the ways Anthony Nolan provides other kinds of support the
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listeners who feel they might need some guidance managing their emotional well-being you can find more information and
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Resources available to order for free through our website www.org.
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Some patients find that connecting with others have been through transplant can improve how they feeling themselves for
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online support you can join our patients and families forum to talk to other people like you.
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We also offer a peer support telephone service where you can speak to a transplant recipient who's at least 2 years
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post-transplant by phone.
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Would you 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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team at patient info at anthonynolan.org or call 03303030030 chat.
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Thank you for listening today.