Helping Premature Babies

Emma Howard: Welcome back to Baby Talk. I am Emma Howard and I am joined on the sofa by Emily Robinson, who is here from BLISS. A charity working to ensure that all babies receive the very best start in life. Thanks for coming in! Tell us a little bit more about BLISS? Emily Robinson: Well, BLISS was established 25 years ago by a group of concerned parents, and our mission is to make sure that every baby who has born sick or premature survives, and also has the best quality of life. Emma Howard: And you've had quite a lot of success, haven't you? I thought going 25 years you would have done, but what is that you have changed do you think in the British NHS system? Emily Robinson: Well, we are quite famous for buying equipment. What we have been doing for the past 20 years of service, has been buying incubators and for neonatal units. And we needed to do that because while neonatal care has been quite a recent phenomenon, we found that they weren't enough incubators to look after the babies. However recently, it's become quite clear to us that the real problem in the NHS now is not the number of incubators, but the number of nurses to look after those babies. Emma Howard: So you need specialists trained to use specialist equipment? Emily Robinson: Yes, that's right. The real problem for this is that if there isn't a nurse available to look after the baby in the cart, that means that baby has to travel elsewhere, and this happens quite a lot actually. We have heard of lots of cases where babies have been traveling all over the country to find a cot with a nurse to look after them. Emma Howard: Now we are talking about premature babies of course here, aren't we? Emily Robinson: Yes, we are, yes. Emma Howard: Their survival is really based on that kind of incubator that -- and the earlier they are, the most specialist equipment that's needed. Emily Robinson: Yes, these babies are really vulnerable and that's why it's very concerning if there aren't enough nurses to look after the babies, because to travel say from Brighton to Manchester for a baby that's just been born, quite early say at 26-27 weeks, that's really quite a worrying situation, and what we are doing is we are asking the government to provide more nurses to look after these very special babies. Emma Howard: We didn't hear of that this, Emily. I mean, I was amazed when you were telling me earlier that lots of parents are traveling these huge distances, at the most heart-rendering times, in everybody's life, this newborn's life, the parents. But nobody saying, isn't it shocking that the families are being sort of moved, especially if the parents already have other siblings, other children. Emily Robinson: Definitely! Emma Howard: Why do you think that's happening? Emily Robinson: Well, we are very keen to champion the rise of babies, and that's why we are trying to bring it to the public's attention. We did a survey actually very recently, and that showed that 72% of these special neonatal units have been closed at least once, because they just physically couldn't take anymore babies. So we do know this is a widespread problem. I think some of the reasons why maybe we are not hearing about it is because it's such a difficult and emotional time for parents, they just don't have the energy to bring up the newspaper or to speak to them -- Emma Howard: Especially if the babies surviving, they are so relieved that they have got this precious life, aren't they? Emily Robinson: Yes, that's right, yes, and now we are very grateful to the doctors and nurses, and we think that doctors and nurses in the NHS at the moment are doing a fantastic job. But really we'd like to see some more resources to help support them in the work they are already doing. Emma Howard: I mean that's the problem in the NHS is the under-resourcing or where the resources are going. Do you think in a way, BLISS has set up a problem for itself in the sense that it's being buying these incubators for a long, long time, and maybe the NHS is thinking, well, BLISS will just take care of that. They'll buy the incubators, there is a problem there with training, they've been around for 25 years, we don't need to look at that because BLISS will just pick it all up for us? Emily Robinson: But we can't do that, because we can't train nurses. Charities can provide equipment, but these jobs of training nurse is a really fundamental, and that's something that the government should be doing. Emma Howard: Absolutely! Finding the way of doing it together. Emily Robinson: Yes, that's right. Emma Howard: I think got the message yet. Especially if you are funding the incubators, it's almost as if you've just provided them with a solution to that problem. Emily Robinson: That's why we've decided to stop funding the incubators actually. So now our fund-raising, we have some really great people who are raising money for us out there. The money we get, we're actually using to provide support; and information for parents, and for health professionals. So we now are using that money to fund helpline for parents because obviously as we have already said, it's very difficult and emotional and very scary time for parents. Emma Howard: And often at the time of separation, isn't it? because the focus is on the child and saving the life. And often there is no place for mum and dad to stay. And that must be the most terrible thing. Especially, if they'd be moved from Brighton to Manchester as you have said and then they get that, what else do they do? Emily Robinson: Exactly, that is a real problem, because often in the neonatal unit, there'll only be one or two rooms available for parents to stay overnight. Obviously, when you had a baby you want to be close to your baby. Emma Howard: And also as a woman you are recovering. Emily Robinson: Yes, you are. Emma Howard: I mean, let's not forget it. You need some care yourself. Emily Robinson: That's right, and especially, if your baby has problems and if they are sick or premature you really need to be close to your baby and we find that also being close to your baby helps with breastfeeding if they can sight that. So one of the other things that we are asking the government to look at is the number of overnight rooms that are available for parents on the unit. Emma Howard: Why do you think the government stand on this issue? Emily Robinson: We have been speaking to them now for sometime, and one of the good things is that the government have reorganized care to series of networks. So you have a specialist center, a Level 3 what is called, where the most complicated babies can be looked after, and we think that's a really good idea because you want your most experienced doctors in one place looking after the baby. We are hoping that the government are going to commit to more money from this in the future. Emma Howard: Do you think, the level 3 units have more staff and then is that your experience, obviously more experienced, but does that mean they are bigger that they've got more cots and more incubators? Emily Robinson: That's right, they are big and they have more cots and incubators. In Intensive Care you should have one nurse to every one baby. Unfortunately, we are finding that's not the case everywhere, and that's the real issue for us, is to make sure that the tiniest, most vulnerable babies have the best nursing care. Emma Howard: Well, what would you say in your experience now with working with BLISS, is the reality of having a premature baby? Emily Robinson: Well, I think, it's very difficult for parents because in the very immediate sense when they are on the unit and they are having their baby looked after, they develop very good relationships with the nurses and doctors, and I think there is something for the parents to focus on that they conceal the equipment and they can see that something has been done for their babies. We find actually when parents go home, that can be sometimes the most worrying time, because they are worried, will my baby be okay without the doctors and nurses? Will the baby be okay without the instrument? Emma Howard: It has to be said, particularly in baby to know that that is true for parents with normal deliveries and no problems at all, when they leave the hospital I suddenly think, are we allowed to leave? We don't know what we are doing with; we are being allowed to leave when we've had all this support. So what it must be like for parents with premature babies and babies with problems, just must be so much worse, that you've had everything and now there is nothing. Emily Robinson: Yes, that's right. And actually the most calls that we have to our helpline are from parents who have gone home with their baby. So we developed a number of booklets and pieces of information for parents, we've got Going Home booklets. So we try to answer the questions that the parents might have about going home with their premature baby. Emma Howard: I am sure the hospital give them a lot of help and advice, but you have them literally nothing, you're not sure of the ground you are on at all. Emily Robinson: Yes, and we've also started a program of training health visitors, because we found that health visitors didn't necessarily know what the differences with having a premature baby, so we have actually funded and produced special health visitors' guide, so that when they go to the home to visit parents with their premature baby they can also answer that questions as well. Emma Howard: But really you want to see more nurses in the hospital, your training health visitors, how quickly is the cycle for getting them out and doing the job? Emily Robinson: Well, training can take some time, so when a nurse enters the profession you will have two years of standard training, and for nurses that are going to work in neonatal units for the second premature babies, they will follow the children to nursing roots. And then if nurses want to work in the neonatal unit they will need to do an extra year of specialist training to make sure that they cover all those extra areas that they need to know about. Emma Howard: So that will take a while, not too long, but if you are trying encourage more nurses to use specialist equipment, and we've got a bit of a vacuum at the moment. Do we have figures, do we know how many need to make up the shortfall? Emily Robinson: Yes, we've done some studies on that actually, and we need an extra 2700 nurses. Emma Howard: That's a lot. Emily Robinson: That is a lot, yeah, and it's a really big problem which is why, we are asking for the government to review the situation, and to plan for an increase in nurses over the next ten years, because we think that would be more achievable. Emma Howard: And there is really BLISS's new focus then. Emily Robinson: That's right, yes, and we've also been asking our supporters to get enrolled in our campaign and on our website www.bliss.org.uk. Emma Howard: And if you put in BLISS I am sure it will just come up on a search and -- Emily Robinson: Yeah, that's right, it does, and what you can do actually is, if you come to our website, you can email your MP and ask them to look at recruiting more nurses. Emma Howard: That's amazing! I want to know, if you have been going as long as 25 years, have you fall at anybody's stories through, because you often hear about babies coming into the world so early, 24-25 week, and then they turn into the strapping young teenagers, have you got that kind of line in your office walls and here they started and how they've got to their university -- Emily Robinson: Yes, we do actually. Yeah, it's really interesting because one of the founders of our charity is still on our Board, and his premature baby is obviously 25-years-old. Emma Howard: Fantastic! Emily Robinson: And graduated from university a couple of years ago. Emma Howard: And he started the charity. Emily Robinson: Yes, that's right. One of the people that was involved in starting the charity. Emma Howard: But his son is now graduated and -- Emily Robinson: Yes, and we have pictures of him for when he was a small tiny baby to now with him wearing his mortarboard and university graduate. Emma Howard: And that really -- so that's fantastic, isn't it? Because it's very scary to see these tiny, tiny little newborns often in the palm of your hand, and just brilliant to know that they can turn into -- Emily Robinson: What's great is that more-and-more babies are surviving nowadays, and that's brilliant. Emma Howard: And surviving with a good quality of life, because of course babies can't survive, can't they, but did a great cause. Emily Robinson: Yes, that's right. But generally babies are improving, and the outcomes of babies are looking a lot better today. And that's also again why it's important to make sure you've got the best possible care for the babies in the hospital because that way you can avoid problems later in life. Emma Howard: So you'll say the future is looking bright. Emily Robinson: Yes. Emma Howard: Thank you very much, Emily, for coming in and to talk to us. Emily Robinson: Thanks! Emma Howard: That's all we've got time for today. Thanks to our guest and we'll see you next time. If you've got any questions or comments, raised by anything in today's show, we'd love to hear from you. Get in touch, you can call us on 0905 028 0090 and leave us a voice-mail at 0905 028 0090, or you can send us a text message, just text the word 'BABY' plus your message to 82540. Another way to get in touch is to send us photographs of your baby, which is exactly what the parents of these little ones did.