Mr. Aidan McCormick:

I thank Mr. Molloy for that and for all that he does to help the people in our situation. The patient voice is critical. I am sitting in the position where I think it is critical. Generally, within the patient voice organisations, we are finding that public voices, such as my colleagues, who are with me, others and mine are heard and our views our listened to, we share our experiences and our expertise is valued, respected and utilised. That is important. As I said earlier, we have a lived experience, which is unique when it is brought to the table. That is important and we have an important part to play.

The cancer forum in Belfast is one example, because many of the other organisations do the same. We take people who have lived experience of cancer or as being a carer or, to use that word I dislike, those who “survive” cancer or are living with it. We are able to look at the work of our researchers in a different way. We look at the language and may see it differently, so we can improve that and add to it. We are bringing that level of expertise to the table and offering that. The feedback from our researchers is that it is valued.

Also, it may be known that, in applications for funding research programmes, there is a section in it for patient public involvement, PPI. It is valued too. We help the researchers write that, review it or whatever. It is increasingly becoming important that there is a contact with the public voice for an application to go through. It was not always like that, but it is like that now and that is important. That is one of the roles we play. We have a variety of different cancer experiences coming through and we are adding that in.

I refer to the Patrick G. Johnston building at Queen’s University, which is an amazing place, even to walk through. We are offering some training to PhD students there about what it is like for the cancer patient coming through. Those who are in clinical trials may not see us the human being, as such. As I say it, I had a life before cancer. They have to know me and my condition. We are trying to bring that to the table and give them training on how we go about PPI. That is important. In Belfast, Ruth Boyd and I completed discussions with our PhD students earlier this year. However, there is a European group of PhD students coming to Queen’s within the next month or two and we have been asked to do a two-hour workshop with them. Again, we are bringing patient expertise, as such, to the table to help them in their delivery. The European countries are doing it in a different way.

There is one other thing I would like to say. I have an example of retraining for Mr. Molloy. I refer to that young lady I met who is working at Randox. That is someone coming in from a totally different occupational background and is now developing, as she said to me, a second generation sequencing. These guys just smile and nod and I am just agreeing with them. That is a hell of a jump. People like that deserve credit. It is happening. That is one of the successful things about higher level apprenticeship. I make that point.

I will make a last point. I do not know when researchers find out about the word “researcher” and how they can get into it. Some people who I have talked to say it is their second year in their master’s degree when they are looking at what to do next and the word “research” comes in and the job of researcher. It is my educational background and I am taking it back to the further education regional colleges and post-primary schools. That is when you need to know you can be an A, B, C and D, and also a researcher on these broad areas.

I refer to what I find as a patient coming through in haematology, which is another experience. Go and sit in the waiting area of the haematology department in any hospital and it will give you a whole new outlook on life. I refer to the development of the clinical nurse specialist in those areas. The first haematology clinical nurse specialist was Laura Croan in the Royal Victoria Hospital and she has now moved in to research. They are very important. I do not know how widespread that is. However, from the patient’s point of view, it is nearly like a middle ground. They can help you understand. That is part of that patients’ voice – helping people understand. That is an example of a specialist nurse helping the patient understand his or her condition on the good and the bad days.