A thread to write down my current feelings on the awful treatment being received by my maternity team.

[Titsalinabumsquash]

I will start this thread with the clear message that I am by no means devaluing the NHS, I'm very grateful for having the service available in this country and I know some parts of it are fantastic.

I'll also forewarn that this is being written by a very depressed, desperate lady (who has been receiving amazing support on the Nov ante natal thread) and its mainly a way of getting it all out there and documented for my own sanity.

I'm currently 37+4 weeks pregnant with DS3, I have an 8 year old (disabled child with v.high medical needs) and a 5 year old currently going through intensive speech therapy and struggling with the school transition himself.
I have DP who is amazing, he works 2-3 hrs away from home everyday and is currently doing everything he can in regards to home life, childcare plus working from home at night to raise funds to fund a week off when this baby is born.
I have no immediate family that can help at all, DP's family can do limited help but aren't able to do an awful lot due to their own circumstances.

Anyway, basic health is, DS1 was induced at 40 weeks after I developed a pulmonary embolism and dvt and then pre eclampsia, delivery was straight forward.
DS2 I suffered SPD and he was born spontaneously at 36+6, quick delivery (SPD pain was severe enough to not feel labour contractions) but delivery was easy and straightforward.

During this pregnancy I have been having Fragmin injections to ward off any potential clots and I've been seeing a consultant regularly and a physiotherapist, I am naturally extremely hypermobile anyway and have again suffered with SPD badly from about 20 weeks. (I'll point out I wasn't aware SPD was something that would return and be worse with subsequent pregnancies)

Up until this week I've found my consultant care really very good, she has been kind, attentive and I've felt like I was being looked after well. She's arranged regular scans and baby is doing great. She has liaised with me in between appointments and with the physiotherapist so everyone knows what is what.

My community midwife is lovely although she does seem to be away more often that she is in work so assessing community care has been tough, I've seen a community midwife twice during my pregnancy.

The physio was fab, she assessed me and said my pelvis was separating far quicker than normal and that it was already separated well above the level expected for a full term pregnancy, this was at 24 weeks. She gave me support belts and crutches to use.

I saw the consultant 2 weeks ago, the SPD pain was causing me to be 90% immobile from the waist down and the pain was unbearable, I am allergic to traditional pain relief ( codine ) so she said to take Tramadol but made it very clear not to take after 37 weeks as baby could suffer harsh withdrawals.
So that's what I do and SPD pain gets worse and I'm left completely immobile and spending days sobbing in pain unable to care for myself or my children, community midwife is on annual leave and my consultant can't see me.

Then I awake Thursday morning, I cannot see and my head feels like it is in a vice, my pain is unreal so I make a really tearful call to antenatal day assessment and go in.

They check BP/urine etc and say its not pre eclampsia and call for an urgent admittance to the ward and also an urgent neurology assessment and MRI scan.
They then discover the amount of pain I'm in with my pelvis and how immobile I am so call for the physio to come up and the on call obstetric dr.

They say that headache is the first point of call, neurologist checks me over and is happy that its a migraine, I'm given paracetamol and left in a very quiet, dark cubicle where I stay until the morning, twice I asked to for assistance to use the toilet because I'm laid flat on my back unable to move and twice I'm fobbed off. DP eventually manages to get a bed pan later that night so I can at least wee. Pain in my hips by this point is the worst it's been and I cannot even twitch my lower body without tears.

Next morning after no sleep the physio comes, she says there isn't anything she can do except offer my occupational therapy support and get me a self propelled wheel chair and commode at home.
The dr arrives and requests a urine analysis and a scan to check amniotic fluid as every movement in my bump is also agony, I can't tell what is fetal movement and what's not.

After a few hours of again no help I manage to get in the wheelchair, howling the place down because its just that painful. I do a urine sample and its sent off after a dipstick shows protien, ketones, and something that sounded like lekolytes?
They then come and say I was meant to be having an ultrasound half hour ago and go off to fetch a porter, no one comes and eventually when I am wheeled down they won't do it because its so late.
The dr returns and says they will induce after a scan the next day because my quality of life had dropped so low and there is no other pain relief he is willing to prescribe at this late stage of pregnancy, plus they're working on the fact that SPD is often alleviated by delivery and more pain relief can be given when not pregnant.
So induction is scheduled for yesterday morning.

After another sleepless night Saturday morning arrives and my usual consultant sweeps into the room, she declares that they are busy on labour ward and I have to go home in the wheelchair and come back in 2 weeks time to discuss induction as she hasn't "got her sympathetic hat on" then she leaves.

The midwife then comes to see me to tell me I can leave, sees the state I am in and goes to have a word with the consultant. She compromises on a date of the 7th Nov for induction (if they have room)

So I'm loaded into a wheelchair and handed over to DP to be sent home.

I live in a 2 bedroom house, my only toilet facilities are up a flight of steep stairs. I have 2 children to care for all next week on half term, one of which requires intense physiotherapy and a strict medication regime.
I cannot get into my house without leaving the wheelchair, I have the choice of staying downstairs in a low sofa with no means of navigating the house at all because of furniture placement, or getting DP to carry me upstairs so I can at least be closer to the shower/toilet but still need huge amounts of support getting there but even still caring for the kids is impossible. DP cannot not go to work after Tuesday.

I tell them all this before I leave hospital, I also mention that I'm someone with a very high risk of thrombosis due to previous history and my immobility and yet they've failed to give me my medication for 2 days despite me asking.

So that's it. I'm at home now, still in pain, still unable to do pretty much anything for myself. 2 children going nuts through worry/ boredom. DP is working his arse off to finish commitments from work that he's missed plus do the shopping, do DS's medication and help me do what I need and keep the house in a reasonable state, he is exhausted, I am exhausted and my mood is low, very low it's scary.

The only one it would seem not suffering is our baby who is still obliviously tucked up in my womb.

Titsalina, you are in your last couple of weeks of this pregnancy, and you are going to feel so very much better after y have the baby. I can't help you because I don't ow what to say, but I remember feeling as dark and desperate as you do, and I remember that after I had the baby, the dank fog lifted, and I hope it will be the same for you.

Sorry to hear you are having such a tough time, sounds awful.

It sounds like you have what is essentially a good team, and this is blip in what has been good care, so don't lose all faith (yet!)

Can you think about the various solutions that would help you to handle this situation and spell them out v clearly to your team as what you want eg induction now, in home help now, and so on?

In the meantime lean all you can on family and friends.

Fingers crossed for you.

That is truly awful. You sound absolutely incredible. I'm sorry I don't have any wise words, but didn't want to read and run x

Tits this sounds dreadful. I'm so sorry. It's shocking that they have sent you home in this condition.

Is there any chance at all you could ask to be re-admitted?

I'm glad there is no sign of a DVT, or PE, but leukocytes and blood etc would indicate an infection at least - was that followed up at all? How is your headache now?

I mean if anything gets worse (can it?) then perhaps get DH to get the Dr out to see you, and they might think readmission would be a good plan - you need an advocate iyswim.

Thank you.

I have exhausted all my solutions sadly, although I have at length discussed things that DP and I thought were all valid points and options but were treated like imbeciles tbh.

They said they can't offer stronger pain relief in a community setting - I suggested that although they can't induce now could I stay in the hospital, even in a general ward if it means they could administer a painkiller at the level I needed. This was a resounding no.

They say they can't induce now because of the volume of emergency cases they have - I offer to go to the other local hospital in the same trust to deliver. They say no.
I live 2 minutes from the hospital so ask if they can call me as soon as a slot becomes available (I mean surely they can't predict emergencies up until the 7th?!) they again say no.

I've been made to feel like an inconvenience and an annoyance because they're full. I understand and completely agree emergencies come first, I'd never expect any different and certainly wouldn't want babies or mothers well being risked for me but I'm astounded at the level of chronic pain they are allowed to leave a person in especially someone who has been brave enough to confess they are concerned about the effect it's having on their mental health.

Sorry I should have put, headache got better slowly but scan was never done of baby and uti was never followed up even after saying to them I had some pinky/brown discharge and increased pain when weeing. Temp was fine though.

They assure me a community midwife will be on duty tomorrow so DP will be calling them, we tried supervisor of midwives yesterday but the call was never returned.

I think you need to call the supervisor of midwives and tell them all this. If you call the main hospital number and ask they should be able to give you her number.

Homestart can help physically to get you up and running after the birth, they can help with the older dc, or just watch the baby while you have a shower.

You should be receiving way, way more help than you are, I don't understand why no help is being offered!

xposted. Keep mithering that supervisor of midwives!

Sorry you're going through this.
Have you thought of contacting your local PALS service? Should be able to get the phone number through hospital or pct website. They will advocate for you.
Another option is to switch hospital Trusts, if there's one nearby. Tell your gp how unhappy you are and ask for an urgent faxed referral for a second opinion elsewhere. Or even a second opinion within the same Trust.
Or ask to speak to the supervisor of midwives.
Your gp may also be able to provide support within the home.
If it all becomes unbearable the just turn up at antenatal and refuse to leave. In your situation I just wouldn't have gone home, blank refusal. They'd have had to get someone to physically remove me and that would make for an interesting complaint!
Good luck, hope you LO chooses to show up soon.

PALS are on the list of people to call tomorrow when they re open, we'll discuss transferring to the next nearest hospital in another trust because I am now really not confident in these people to deliver the care I require for me or my baby.

I would have refused to leave normally I'm quite a tough cookie but I'm so worn down by it now I just couldn't face the fight.

Currently trying to find an emergency cleaner to help out during the week and get in contact with our usual babysitter to see if she could do a play park trip with the boys once a day for the week.

Oh my dear. Have you got the phone number of the head of maternity services? Phone the labour ward and ask to speak to the senior midwife for a start. You are in a lot of pain, pregnancy related or not - you shouldn't be left x

Good ideas, titsalina. Must be so hard for you right now but even through everything, you're doing your best and should be proud of your coping skills. Are you sure you can't ask a neighbour, a school parent friend, no-one for help? Honestly if a neighbour or a parent I hardly knew from school in your situation asked me for a hand, I really wouldn't mind, it's not like it's a permanent situation. Even the local church might be able to help (I'm not churchy in the slightest) by sending someone over to take the kids to the park, play games with them, or cook lunch for you guys or whatever. Remember you can repay people afterwards if you feel you need to, in whatever appropriate ways.

I was put through to supervisor of midwives yesterday and left a message on the answer phone.

I have ordered shopping online which DP has gone with the kids to collect, I've ordered easy things that he can cook or the kids can do themselves (cereal etc for breakfast)

DP is taking his last available work at home day on Monday but for the rest of the week he'll be out the house 5am-5pm so can do a quick dinner when he comes in.

Tuesday the boys are scheduled for a community outing with the team that help us with DS1's care, I'll also check if there is anything else they can do to help at home but I know due to staff illness they're very short staffed as it is.

Wed,Thu,Fri the lady that does any evening babysitting has said she can take them to the park or for a walk after lunch for an hour to give them some outside time.

That's something at least, now I need to see if I can get someone to do a bit of cleaning.

In the meantime DP and I will spend tomorrow phoning and phoning until we hopefully get some help with the pain and an induction brought right forward.
I'm not sleeping well at all, I keep trying to shift in my sleep and waking myself up because it hurts, I'm also very limited to toilet trips so I'm scared to eat or drink incase i need to go too often which I'm aware isn't at all good.

Aaw poor you, I know it's not nice but perhaps you might think about getting some incontinence pads/pants to get you through the next few days? You aren't incontinent, there's no stigma, it'd just be one less thing to have to stress about. You must drink and eat.

Sounds bloody appalling. You need an advocate to kick up a real fuss for you, and for them to keep escalating up the hierarchy until you get readmitted. Hospital chief exec and threat of papers if need be. How is yr local mp for this kind of thing? This makes me so furious!

Not suggesting you couldn't do it yourself, btw, but you shouldn't have to be fighting in the state you are in.

What would happen if you turned up at a&e?

I have much milder SPD and an older DS with severe SN, and when I described the SPD my son's keyworker was very emphatic that I should call her straight away to arrange for extra respite care if I felt I needed it, above our normal allocation of help. Do you have anyone like that you can call on? It doesn't help with the medical side of things for you, but it might be one less thing you have to worry about.

Bit late for help during half term but, try phoning your local college to see if there are any childcare students who would like a placement. This is free and could prove a great help with your other children.

I had problems with my care at the end of my pregnancy when all the things they had agreed would happen at the end were suddenly decided unnecessary. I contacted PALS and although they didn't say much to me, I received a phone call from the supervisor of midwives, who was very sympathetic and my care suddenly improved again.

Hope it all gets sorted for you.

DS has his portacath being flushed tomorrow by the community team who are also amazing support so they'll be first on the call list for an extra volunteer if they could offer anything in an emergency.

Supervisor of midwives will be called again this time with DP demanding they actually talk to us, the community midwife will be called as will PALS, at the end of all this we will be putting in a weighty complaint but first priority is getting baby here and me sorted.

OMG my love, how have I missed that you are pregnant, let alone all of this misery?? :( I am appalled at their lack of care & compassion - I hope you get some of both tomorrow!!

Hi Titsalina, how's it going? Have you had any joy calling the SOM or PALS? Hope you're ok x

hope you're feeling better Tits