Northern Soul’s Wendy Pratt writes candidly about her devastating experience with NHS failings, how she came through it, and why she still loves and admires the health service.
Some of you will know, as I talk about it quite a lot, that my husband and I lost a baby daughter in 2010.
Matilda Rose was an IVF baby. She died during an emergency C-section and her death was later attributed to clinical negligence on the part of the local hospital who were initially in charge of our care.
Matilda’s conception came after years of trying for a baby, and spending four years on an NHS waiting list (the funding was cut and then reinstated while we were on the list). Eventually we were allowed to go ahead with our one free NHS attempt at IVF. And it was successful. After six years of watching everyone around me having babies and starting families, we had finally made it. All through my pregnancy I watched some of the friends I’d made on the support website going through countless rounds of IVF. When I fell pregnant, I felt not only a deep sense of pain for them and guilt that I had become one of the lucky ones (first time IVF success!) but intense relief that now we wouldn’t have to face that future.
Infertility is a tortuous condition. It affects one in four people. It affects someone you know right now. It could be a friend who avoids conversations about reproduction, or perhaps tells you they don’t like babies to avoid the painful conversations and the ‘your turn next’ pitying looks, the ‘I know how you feel because I struggled for six months’, the ‘I know someone who sat on this magic chair’, or ‘ they stopped trying and became pregnant’ and so on.
These are all kind sentiments and very well meaning, but coming from someone with a nine-month-old pulling at their trouser leg and a newborn mewling in the crook of their arm, well, it’s a bit patronising. Especially if you have been trying for a long time. ‘Have you tried…’ is another one, usually linked with herbs, supplements, sex positions, new and amazing technology, womb transplants or ‘relaxing’. Gosh, the number of people who fell pregnant once they relaxed and stopped trying. Why are the medical journals not leaping on that one?
People want to help. Of course they do. For the most part, they are kind and well meaning. But I am amazed by the opinions expressed about IVF – a technology which is able to give childless couples the chance of having a family. And it’s no surprise that the most venomous opinions are from people who have no problem conceiving.
Recently, an article was posted on The New York Times Facebook page about a couple who had been successful with IVF following numerous attempts including donor IVF and four miscarriages. Somehow this was seen as a selfish act. The comments were horrific; women against women, baying for blood. Many asked why an infertile woman would go through the selfishness of having IVF when there were so many children needing adoption.
Well, as a friend of mine pointed out, perhaps because they want to experience pregnancy, labour and birth in the same way as a fertile woman? Why aren’t fertile people expected to adopt? Why should it be seen as the infertile community’s responsibility?
But this is how infertility is often perceived, but it’s also the case that, via social media, some people believe they have the right to judge others. For some reason, having children is seen as a lifestyle choice, (again, usually by the people that can have children). Smoking is a lifestyle choice. Drinking is a lifestyle choice. Procreating is a basic human instinct. And choosing not to have children is an entirely different thing from having the choice taken from you.
So, when my husband and I discovered I was pregnant, the relief that we were no longer on the outskirts of society was palpable. No more ‘bottom of the list’ for us when colleagues with children wanted to book time off in the Summer or at Christmas. No more hiding away in the run-up to Mother’s Day, Easter, Halloween and all the other child-oriented events and holidays. We had made it, we were in the club.
Sadly, agonisingly, devastatingly, we learned that our daughter had a condition called Intra Uterine Growth Restriction (IUGR). She had poor blood flow through my uterine wall and through the chord, meaning that once she reached a certain size, she would struggle to get the oxygen and nutrients she needed to thrive.
From around 24/25 weeks, her movements began to decrease. I was an obsessive mum. I had read all the books, watched all the videos. I was so frightened of losing this baby that I took no chances. I did all the things I was supposed to do. I told my midwife and my doctor. I went up to Ante Natal Day assessment. I went to the labour ward. And I was given terrible advice, I was sent away.
Over the fortnight when things were going wrong I repeated these actions until I felt I was being a nuisance. But it later emerged that there was a lack of communication between all those different sectors, and despite being consultant-led, my consultant wasn’t aware of what I was going through. In some instances, it wasn’t even written in my notes. My GP was great, she told me to go straight to hospital but they just sent me home, again. And it was confusing to be told by one health professional that reduced movement is a serious sign and I should be checked out immediately, while another health professional says that ‘the baby is probably just a quiet baby’.
But she was really struggling, my baby, my daughter. Eventually I was admitted to hospital. But it was a weekend. The ward was busy. There were constant changeovers of consultants and no one seemed to know why I was there. One night I was told to prepare for delivery within 24 hours as the baby was compromised; the next day I was sent home and told to make a routine appointment the next week. And all the time I was telling them she wasn’t moving.
I willed her to move. She didn’t. Days later, during which time I had readmitted myself, they decided that Leeds General Infirmary might want to see me as they had expert consultants there. We drove the hour to Leeds ourselves because we were not classed as an emergency. My daughter was delivered by experts in obstetrics and neonatal care in a rush of running through corridors, and a sudden, horrifying crash section a couple of hours after our arrival. It was an emergency. It had been an emergency for days. Her little heart held on and held on but stopped as they lifted her from me. It was too late, she couldn’t be revived.
I spent a long time wishing I had died with her because the pain of her loss was unbearable, because we had lost our most-loved daughter. And we are infertile. We now had to pay for IVF treatment if we wanted the chance of a family. So far we have saved and borrowed about £37,000 for our IVF attempts, each one becoming less and less likely to succeed as I age. I am 37 now. I am classed as old in fertility terms. Our last cycle was disastrous. We’ve been trying for 12 years.
About 18 months after our loss I felt strong enough to ask some questions and set up a meeting with the trust to find out if our fears about poor care were true. It had all been such a nightmare, I just wanted to make sure it wasn’t grief making me believe she could have been saved.
I desperately wanted the trust to tell me she had been so poorly that no one could have done anything, so at least I could stop beating myself up. But they couldn’t tell us that. They had lost some of our notes, they had no records of some of our visits, they didn’t have a paper trail, and they had no answers, except that it was a busy weekend.
I came away disappointed and even more confused and decided to advise a solicitor to go ahead and investigate on our behalf. At the end of last year, after three years of investigations, the trust admitted clinical negligence and awarded compensation. There had been missed opportunities and vital tests which would have shown for certain that the baby was in distress; a simple CTG belt would have shown the baby needed delivering. Had she been delivered on that awful weekend when they sent me home, on balance of probability she would have lived. She was premature at just over 27 weeks but she had a good chance of surviving. However, there had been confusion among staff members, it was a weekend, it was busy, she died.
We are now using the compensation to fund more IVF. But there won’t be many more cycles. Our chance of conceiving is dwindling. We’ve had two miscarriages at eight weeks. This is hard enough, but after everything else, well, it’s draining and devastating. Now when we face a failed cycle, our first thought is that at least it’s not a miscarriage or a stillbirth.
As I became better able to deal with the findings of our report, I felt I had a responsibility to let other pregnant women know what had happened to us, not as a warning or to cause alarm, but to alert them to the fact that maternity services are massively under pressure. I wanted them to know that if they sense something is wrong, they need to stand their ground, ask for a second opinion, ask for a scan, ask to be monitored, to be transferred; ask for all the things that would have ensured my child’s survival.
It felt wrong not to speak up and speak out, to help prevent the same thing happening to someone else. So I did. The story was picked across the local and national media, and different newspapers put different spins on it. Some made sure that my story raised awareness while some made sure that it painted the NHS in a bad light. And there’s no denying that it does paint the NHS in a bad light.
A lot of the coverage focused on the compensation payout, as if we shouldn’t have received it, as if the corporate insurance should not have been used. No matter that we had spent £37,000 trying to recreate that NHS IVF treatment (which cost around £6,000). On some websites, the comments were horrific. I shouldn’t have looked.
‘Why is the woman smiling in the photograph? Because of the money?’ ‘Typical of society that this woman’s first thought is compensation, doesn’t she realise she is taking money out of the NHS?’ ‘Unfortunately babies do die, she needs to just deal with it’. When I started answering back, the publication put a block on the comments. Among the vile remarks, though, there were comments from women who had suffered in a similar way. They wrote to me, messaged me, made observations on the press reports and said ‘this happened to me, I trusted them, I was let down, I accepted it because they are the experts’.
There were women who thanked me for speaking up. And there were those who thought that saying anything negative about the health service gave the Tories the opportunity to criticise the NHS, say ‘it’s not working, see?’ and allow them to impose privatisation.
But it’s my belief that deliberate manipulation and mismanagement by the Government is the reason the NHS is failing in some areas. It’s Westminster intervention that’s causing the shortfalls in order to show that there are short falls. And the shortfalls are baby deaths and elderly patient deaths.
As a whole, the NHS is underfunded and badly managed. The NHS England Board of Directors says that the health service should cast the net wider and hire management from outside the NHS. Look at this list and see how many people on it have experience of working inside the NHS at all, let alone at a grass roots level. Yes, this list’s collective CV is extremely varied but where are the people who have actually worked in hospitals, who have been under pressure to care for patients?
More sinister, however, is the target-based league table style of, supposedly, improving the NHS. The Government lays down virtually impossible targets and offers funding as an incentive to meet them. And then when the hospital fails to meet them, it is punished and held up as an example of a poor hospital and its funding is cut.
A failing hospital is not full of lazy, arrogant health care professionals. Most people I have met while working in the NHS (I worked in pathology for 13 years) and being treated by the health service have been dedicated and self-sacrificing. As a former employee, I’ve seen how target-led timescales provoke panic. They result in staff skipping breaks, people working on-call without adequate pay or adequate time off, and staff cutting tiny and seemingly insignificant corners in order to prioritise the target. They lead to time-poor employees who do not have enough hours in the day to pass on crucial information.
When staff tell their managers that working practices have become dangerous, their own work pressures mean that often the warnings are ignored. So we end up with an overworked, over-tired, underfunded, disillusioned workforce. These people joined the NHS to care for others but are left feeling that the job is impossible because they are so busy patching people up and shoving them out of the door as quickly as they can. They lose the motivation, the vocation, and the will to do their absolute best, because they are being royally screwed.
This method of running the NHS down so it appears that privatisation is the only option is going to destroy our most fundamental service. As Michael Sheen so eloquently put it recently in Wales, we are in danger of becoming a society that we cannot be proud of.
The NHS is a cultural backbone in our society, it allows us to hold our heads up. It is the most culturally diverse employer, it does not discriminate between rich and poor. But when targets are put before the care of patients then things are going to go wrong. And a symptom of that is a society too frightened to admit any NHS failings, a management system so worried about further funding cuts that instead of addressing failings, they pretend that things are fine, and a government sneaking privatisation in by the back door.
I don’t blame any one person for the death of my daughter. I don’t even really blame the trust, though I am angry that despite me asking, they have never been able to tell me what changes they have made to prevent the same thing happening again. But I am angry at the Government. This is my NHS. This is your NHS. It does not belong to the Government. I feel manipulated and let down.
The biggest changes need to be to the NHS itself. I know everyone says it, has been saying it for years, but it actually needs to happen. It needs to be staffed properly. And yes, everything costs money. Where is the money coming from? At the same time that MPs pocket an 11 per cent pay increase, healthcare workers get nothing. I see MPs complaining about being on only £160,000 a year (that’s approximately the combined salaries of six band five healthcare professionals). I see huge multi-billion pound companies avoiding billions of pounds of tax and the Government doing nothing about it, all the while cutting benefits for the disabled and people dying of cancer.
I have no idea if another government would do the same thing. In fact, I think a target-led approach may even have been a Labour Party idea in the first place. But, under the banner of austerity, the Tories have taken it to the extreme while the private healthcare companies circle closer and close to their friends in government.
Although I’m usually a Labour supporter, this is the first time in a General Election where I’m not sure who will get my vote. I know I won’t be voting Tory though. It is my honest belief that the Government has pushed the NHS into unsafe practices. The Trust where my daughter died has since been taken over by a bigger Trust. I hope it makes a difference. I don’t think it will. Until something changes it is important that we speak up. I hate that we live in a society where babies die, the elderly starve to death in hospital and people dare not say anything for fear of losing our NHS. I love the NHS, I want it to be safe, I want it to work. I don’t want other people going through what we went through.
So why not privatise? Perhaps it would allow a better funded healthcare system? Well, for one it removes the vocational aspect of the NHS. If you place profit as the pivotal factor in healthcare, it means that healthcare is not the pivotal factor in healthcare. If we allow the NHS to be sold off bit by bit, we will not get it back. We will have lost something so constitutionally important that I would feel ashamed of my country. Please don’t allow this to happen. Write to your MP, tell them that you want the NHS, that it’s important to you, that failing hospitals need help, not punishment. Speak out, speak up.
By Wendy Pratt
Main image by Sophie Ingleby
Wendy will be talking about her experience on the O’Brien show, ITV, at 12.30pm, April 1, 2015