PVCR Patient Partner - Dorothy Conaghan

My journey with PVCR

In conversation with Aoife Gordon, UCD School of Medicine undergraduate medical student.
Read time: 8 minutes

When did you first become involved with PVCR?

I first became involved in 2018. There was a conference in UCD and I went along to it, I think they were launching something in September 2018, it could have been the Translational Oncology.

Can you detail your involvement to date?

What has made my stick with it is the actual balanced conversation between patients and practitioners. This balanced conversation is sort of a partnership and that partnership is something that I think is crucial in all forms of medicine.

I know there are wonderful examples of individual practitioners who build up partnerships with their patients and colleagues sometimes, but to make it a universally accepted conversation is where the power lies. I like that within this committee, the status of the patient in cancer research is of equal importance to that of the researcher.

That’s really what I feel my involvement is, to sort of keep that alive. This concept is new and there are new issues and challenges arising all the time. It’s got to do with our mindsets too.

My area of research is social justice and equality studies which can be adapted to any field. I happened to be doing it in music, because that was my career, but it can also be adopted to medical training, science and practice.

Some of the most egalitarian institutions in the world are actually schools. When children go into schools, they are all treated equally. You know, it’s not without reason that there is a caution within the medical profession. I think I would respect that caution to go into it too, in terms of equality and social justice.

I mean, it’s necessary that patient voices are there, but it does not sit the same way in a medical environment that it does in an educational environment or any other so it has to be tailored for the environment that it’s going into.

How important do you think patients’ voices are in the research process?

I can’t imagine it not being there. However, not all patients have the same capacity to have their voice heard and that’s something I am very mindful of. It has to be there without being condescending to a patient.

Different people relate to different institutional personnel and structures in different ways. The patient voice is not one body, it is a sociological thing. I hate to use class, but there is a huge literature on the fact that working-class people relate to institutions such as schools, hospitals and authority in different ways to middle class or upper middle-class people. Or people who have money.

There are some people who don’t have the capacity to engage, they don’t have the language or the reading level, consequently they don’t have the confidence. We can say “our door is always open” but that’s one-sided. There are also some people who are scared, there are an awful lot of emotions that come with being a patient, and PVCR must accommodate this too. Fear is a huge one, people sometimes don’t want to know.

I don’t think we can ignore that. These are the sort of “dirty” sociological questions that actually are very important within the patient voice conversation. We know it’s necessary because if the patients are not involved in cancer research, it is actually one-sided. This movement is very simple, but it is huge and also very complex.

We have got the complexity of all the different individuals who are going to come in to engage with medical practitioners. Medical practitioners are by their very nature, educated to after Leaving Cert in school. So, you have to dig underneath that and see how the patient voice is actually perceived.

There is no simple answer. It needs to be there, but it needs to be handled. You can say it’s important but how important is it if the practitioner is not aware of where that person is coming from in terms of emotional position?

There is a huge amount of it already in med school training, which is good, but not all patients are coming from the same or even playing field. Some patients are informed, some are not informed, some have their whole families there.

"That’s what is so wonderful about the Patient Voice, that is actually has been named. That is so huge. You need to name what is needed. That’s the sociologist in me".

What personal value have you gotten from your involvement?

I haven’t thought about personal value, I think I am involved more on a cause level than on a personal level.

When I was diagnosed, went through the treatment and got back to work, I put that behind me. I was in a position that I could manage it quite well. I have no regrets about what could have been done.

I suppose one thing that it has highlighted is my appreciation for other people’s journeys, around the committee that have been less easy than my own. My journey was sort of the same as theirs, but they were not in the same position as me. I had no young children to look after and no parents who would be worrying about me. My positionality was quite favourable.

The way I handled it was to always ask questions. My oncologist suggested that I attend the Patient Voice. I was asking so many questions and he told me I would get my answers there.

I had my list every Friday morning for when I was plugged into my chemo. Sometimes he would ask the medical student who was on the stool beside me to answer the questions. I always knew I was in good hands.

Something else I have learned through my involvement in PVCR is the status of other therapies. They were seen as an add-on other than a necessary part of recovery. You know, you have your radiotherapy and chemotherapy, and they’re clinical but there was also assumed/ mandatory physiotherapy. That was seen as voluntary.

I didn’t know it was available but one day I went upstairs, and the Physiotherapist told me that she was running a Pilates Physiotherapy for breast cancer patients over a six-week period, twice a week. She invited me to join.

That was such a gigantic leap for my head, I felt I could move without hurting myself. That came from a chance meeting on a corridor with a physiotherapist who was exceedingly well trained. That physio and her two colleagues had a specific interest in breast cancer patients. Their knowledge was second to none.

I was then selling it to everyone but unfortunately, they could not reach enough people to continue it for the next six weeks. After my chemo, they told me that the radiotherapist would come up and chat to me, that was a definite, my next bus stop if you like. The status of the physiotherapist was not the same as the radiotherapist.

After you have any sort of surgery, regardless of cancer surgery, you’re afraid to move. With cancer surgery, you have the added thing of all these chemicals going into you. You’re afraid to move because you might damage something, and you’re feeling bad anyway.

Movement does so much for the head too. If the head is right, the physical body is going to be helped along and vice-versa. Because the effects of say physiotherapy for example can’t be seen or can’t be quantified, its status is not as prominent. It needs to be seen and recognised as an integral part of the cancer journey not just an elective add-on offered by some hospitals. Within the psychological services and the physical services there are splinter groups for specific patient groups. Again, I think these services should not be complimentary but necessary.

I happened across it PVCR only because I was vocal and I was always asking questions to everybody. Not everyone would have the capacity to do that. I am going back again to capacity of patients, to get inside their skin and recognise where they’re coming from. I would love to know what percentage of the population don’t feel confident approaching health professionals with questions. Physiotherapy and psychological services deserve the same respect as chemotherapy and radiotherapy.

The conversation has come on hugely in cancer in the last 25 years. Previously the word “cancer” was never even mentioned and there was profound psychological shock involved with it. The good thing now is that the conversation is out there.

Going back to what I said earlier, it needs to be named and it is named now. That has what has brought me to my involvement. We can name these issues. It’s not that they were hidden but they weren’t verbalised.

Would you encourage others to get involved?

I would encourage other patients to know it’s there and then let them decide if they want to get involved. The one thing that Patient Voice is not, it’s not a helpline and it’s not a chat.

At the end of the name “Patient Voice” you’ve got the words “Cancer Research”. You know, to advance cancer treatments. That’s the huge difference between that and a post-cancer support group that will help your head.

I have been thinking about different people I have met on my cancer journey. There are people I have met who are very vocal and very understanding but I don’t know if those people would fit in to Patient Voice. I would encourage people to get involved if I thought they would fit in and understand the aims and rationale of it.

Its aims are not to help people through their post treatment phase – it is a two-way conversation. So yes, I would encourage patients to get involved but there would be a caution attached to it.