Currently pregnant after a number of previous losses earlier this year. Receiving care in London.
These following are all things that are tolerable and just part of how it is, I'm grateful to have the care at all. However I hope these points help inform the bigger picture. Professionals' advice can also vary: one told me I would be referred for fertility tests after third loss, one said not, despite being in the same hospital; one told me I'm high risk for an ectopic pregnancy because of a previous one, another that it is only 10% more likely, again same hospital; one midwife said an underlying condition would be exacerbated by pregnancy, another that it wouldn't. Of course there are marginal cases and pregnancy is tricky to judge, but it leaves me feeling no one is ultimately responsible but me.
• Continuity Never seen the same GP or midwife twice on pregnancy matters, appointments take longer because of having to explain my history, also upsetting because of having to revisit losses. Often worried that I can't always tell what in my history might be relevant, I'm probably under-reporting, but time is always so tight.
• A&E/EPU links Was directed by NHS 111 to A&E recently in current pregnancy because of severe abdominal pain. Waited 3 hours to be seen (fine) then 4 further hours while doctors on duty concluded they couldn't offer me a scan and I'd have to go to EPU at the same hospital the next day (also fine). Had asked for the duration of the latter 4 hours at A&E whether I could please just go home as feeling exhausted, hungry and cold. Consistently told that would be against medical advice and to stay put. Only to be told 'ok fine, back tomorrow please' in the end. It seems inefficient for me to have been taking up an A&E bay all this time, also for NHS 111 to have sent me to A&E at all. EPU handled everything brilliantly in the end.
Mental health I suffer from severe anxiety, which has been worse this pregnancy, incl physical symptoms like panic attacks, heart palpitations and really negative thoughts/avoiding daily life. The background is complex. The hospital where I have my maternity care only supports severe MH problems in expectant mothers, e.g. Schizophrenia (fine), local secondary MH service to me has closed down, next closest one never came back to me after self-referral, GP said 'well things are busy and to be honest unless you're taking active steps to plan a suicide, buying stuff etc, you're ok'. Another GP said 'well what do you want me to do?'. Eventually one of the excellent midwives managed to get me into the hospital's pregnancy MH clinic even though I'm a little below the severity needed to be there. There were delays getting that appointment because of internal hospital admin errors. That clinic has now been cancelled due to resourcing, awaiting new appointment. 3 months of limbo, and not able to take regular medication because harmful in pregnancy. All of this has really affected my wellbeing and my work.
Records My hospital still uses paper records that I carry with me everywhere, and professionals wrote in. It's no trouble but also not integrated with my wider medical records at the same hospital and midwives rely on me to say which operations/problems I've had in the past, even under the same roof. Not sure what'd happen if I lost these papers. Also some historic records of mine, that are now relevant to pregnancy, been lost between old and current GP surgeries. We have to re-do the investigations.
Overall, there are a lot of wonderful people doing what they can in very tricky circumstances. I've been so moved by the pockets of endless kindness and compassion, and by the commitment to patients I've encountered in my last 12-18 months in the pregnancy system. But it is patchy and I always quietly dread appointments because I don't know what I'll get. It is also clear that there is tremendous pressure and that things aren't going to be sustainable for much longer.
One final thought on private scans, if in scope. There is a whole cottage industry of private 'early resistance scans', some as cheap as something like £49 on Groupon. If you look on the pregnancy boards here on Mumsnet, these are often far from reassuring - I get the sense that sometimes the tech is not of good quality or the expertise/after-care aren't there when it's bad/inconclusive news. People can walk out of there desperately worried. Then they can get more worried when their private scan results don't match up with NHS scan results in terms of measurements/dates. There has been a bit about it in the press. Maybe there is room for tighter regulation here. Would also be interesting to know if these private scans have a knock on impact on the demand for early NHS scans due to additional worry/poor handling.