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Here some suggested organisations that offer expert advice on SN.

maybe wrong place but could do with advice 're pg

(52 Posts)
redwellybluewelly Tue 01-Jan-13 19:38:42

I've been a lurker and occasional poster for a long time but have namechanged after was outed in RL.

DC1 is two and a bit, hemi CP and seizure disorder after oxygen starvation during a mismanaged labour. Doing well but parenting is different, lots of input and therapy but overall we manage.

I'm 17 weeks pregnant. DH and I haven't told a soul yet, no intention to tell until 20week scan; and even then we are planning on just telling work.

I'm terrified in a way I didn't think I could be. I've posted in pregnancy and got good advice but I don't think people "get it", baby is wriggling and letting me know he/she is ok but I haven't bonded, can't contemplate having a healthy newborn in my arms as it were

Just wish we could be happy and carefree like the mums to be in boots and M&P, if anyone has ajy words of advice or a mantra it would help us to hear it..

redwellybluewelly Thu 14-Mar-13 21:20:11

Love the idea of being an NHS health tourist. I genuinely would prefer nothing more than to get the hell away from our outstanding regional hospital. However all our family live very close by, nobody I know that I could stay with would be outside our PCT. The reason we can't get child care from the family is due to DC1's seizures, frightens them apparently.

I've CMW on Tuesday when I intend to lose the plot totally.

buildingmycorestrength Thu 14-Mar-13 21:43:00

I am HORRIFIED that the MH support you were promised has not materialised.

You should have had some treatment for trauma, really.

There is a very short, quick treatment which may be affordable for you? Eye movement desensitisation and reprocessing (EMDR). It is supposed to be amazing. It might be worth it for one session for about £50.

Dealing with the NHS, it sometimes also helps to start taking names, discussing things in terms of inadequate care, and basically acting as if you are considering litigation (which you would be well within your rights to pursue given the small amount you have said here). They might get their act together then.

Best of luck with the birth, really hoping all goes well for you all..

redwellybluewelly Thu 14-Mar-13 22:00:44

I was dx with PTSD after the birth but as yet have had no constructive therapy. I do have listening therapy via work though every fortnight, for over 18 months now.

I have fought with the NHS for my DC1 but as yet not for me, as you say its time to start getting very very serious.

bochead Thu 14-Mar-13 22:01:37

I had to seek non-NHS help at one point for my son. With hindsght I think the NHS/LA felt that if they came up with the goods they were admitting liability for their screw ups iyswim.

I'm sure if you rang MIND, the NCT and "contact a family" one of the three would know of a local independent charity funded counselling and/or advocacy service that could help you.

This is one of those situations where it doesn't matter the rights or wrongs of it, all that matters is that you don't have a breakdown due to the appalling way you are still being treated.

A letter to the trust's chief executive, copied to your MP and the local patient liason service might get things moving in the right direction.

pinkorkid Thu 14-Mar-13 22:12:43

Patient Advice and Liaison Service will advocate for you in ensuring you get the care you are entitled to. You have been let down appallingly and it doesn't have to be this way. You can ask your Gp to refer you to third level Mental health services out of area if necessary if local services unable to meet need. The threat of having to pay out for that may galvanize them to help you locally after all.

Handywoman Thu 14-Mar-13 22:16:54

I reiterate, Supervisor of Midwives or Consultant Midwife is the way forward they will have more of a handle on the situation, PALS will prob work at a snail's pace, time is limited. Get the name of the Head of Midwifery and mention her name and your disatisfaction, they will soon get the picture wink

redwellybluewelly Thu 14-Mar-13 22:42:45

Thank you, I'll get onto that tomorrow because I have to know for my own sanity when this baby is coming. I hate the hospital, I hate the delivery suite, I hate the fact I'm having to opt for an ELCS and also that everyone is ignoring my fairly valid request for help.

But mostly I'm just shit scared and also worried about how dc1 will cope and how not to cock up 'their' relationship and bonding with dc2 - normal second time mum worries with just a hint of extra concern. Ironically the only bit of the hospital I trust is the NICU.

buildingmycorestrength Fri 15-Mar-13 06:05:14

Course you are scared. You had a terrible time and have been badly, badly let down.

Do 'lose the plot' with the mW today. Rage and scream!

redwellybluewelly Tue 19-Mar-13 19:47:37

Ok. So. 28weeks. 11 weeks to go.

No MH support.

I've heard nothing at all. Despite having explained how we needed to arrrange the CS for a date that we could get childcare for DC1 that THEIR HOSPITAL left with a seizure disorder.

Saw my community MW today and sobbed about how worried i was, she was shocked by the lack of communication. She rang the consultants secretary who told us that my CS date was booked and confirmed, and she also flatly refused to pass on any messages to the consultant as he doesn't take personal calls.

We cannot do the date I'm booked in for. Not only that but where is my choice that was promised? Where is the handling of my anxiety? Since when are ELCS bookedwith aabsolutely no discussion?
The Community MW said sure as shit is shit that my messages carefully explained had never reached my consultant. 

I was promised choice. I was promised understanding and sensitive care.Moving to different hospital is simply not an option, we have one huge teaching hospital and nothing else.What the fuck do I do? I fight medical battles with the system on a weekly basis for my DC1, how can this be ok?

buildingmycorestrength Tue 19-Mar-13 20:28:07

You have been let down so so badly.


This is awful. What can be done? Solicitor? And tell consultant secretary you will be contacting a solicitor? Silly person obviously does not understand the gravity of this.

Is there anyone else at the hospital you can try? Maybe your GP will have an idea.

PALS...but slow someone pointed out.

bochead Tue 19-Mar-13 20:50:01

Tell the silly secretary you are now putting in a FORMAL complaint to the General Medical council about your care in relation to this consultant. The history with the first child's birth is public knowledge for the clinical care he oversees ffs.

MP and letter to the Chief Executive of your PCT. This is utterly disgusting.

buildingmycorestrength Tue 19-Mar-13 20:53:40

Much better ideas, bochead

Get medieval now.

DisAstrophe Tue 19-Mar-13 21:02:10

I agree with Bochead. Time for a formal complaint in writing. So sorry you are going through this. Also feel sad that your family feel they can't help out more. I was lucky that our childminder was happy to stay the night when my youngest was born.

If you live in London/Surrey borders I'll come and help you!

redwellybluewelly Tue 19-Mar-13 21:07:17

I asked the CMW today for SOM details and to write them in my notes.

Checked when I got home. No details.

But CMW said she was going to talk to her supervisor to try to find out what to do next, she also rang AN clinic and is trying to get me in to see this consultant in a fortnight. Part of the issue is that im not under consultant care until 34weeks so don't see him regularly till then, but we couldn't leave booking an ELCS until then as care for DC1 is hard to arrange.

I will definitely ring SOM tomorrow, I cannot risk having a home birth but at the end of the day I'm sick of this shit.

redwellybluewelly Tue 19-Mar-13 21:08:45


Time for me to write this up I think as a complaint.

Also need to try and find out if the PCT is breaking NICE clinical guidelines because it has absolutely no MH in pg provision.

buildingmycorestrength Wed 20-Mar-13 07:47:14

How's the letter writing going? Hope you are feeling okay.

redwellybluewelly Wed 20-Mar-13 09:05:49

I have a lecture 9.15 - 11 so will get onto it after that. The letter is being sent to PALS and copied to the Consultant, the SOM and the community MW team.

Even if they arrange a CS date to suit us they still should never have arranged one behind my back without discussing it first. Especially as it had been made clear to them that our primary concern was to ensure care for our DC1 who they left brain damaged through negligence.

I have the details of how to get in touch with the SOM today and if we have no joy with her then I'm contacting my solicitors tomorrow - they are dealing with DC1's negligence case.

buildingmycorestrength Wed 20-Mar-13 09:28:45

redwelly I'm so glad you have a solicitor. Was a bit worried about pressing you on that in case I sounded a madly litigious person and I don't particularly have experience to pass on, but it is the right thing. Hope it brings the right outcome for you.

redwellybluewelly Wed 20-Mar-13 11:57:30

Letter written.

CMW has managed to get me in to see my consultant in a fortnight for a short slot, however I've also drafted a PALS complaint about the secretary. I've been promised a ring back from the SOM after lunch - depending on what response I get from her depends on what else I put in my PALS complaint.

If all that fails then I'll get the heavies in (solicitors)

buildingmycorestrength Wed 20-Mar-13 12:26:50

"Heavies" not the local thugs then? grin.

Well done, some progress made.

DisAstrophe Thu 21-Mar-13 09:49:38

Good luck. Redwelly.

redwellybluewelly Thu 21-Mar-13 10:23:44

Supervisor of MWs is the way forward it seems.

CS was booked without discussion and apparently letter sent on Monday this week, its not arrived yet - and I am only too familiar with the hospital post it usually arrives the day after it was sent. SOM couldn't get past the secretary either so just went to speak to the consultant and date has been moved to a date we can make.

I'm still pissed off and annoyed it was done with no discussion, especially as the consultant promised he would be kind, compassionate and caring yada yada yada - although I've posted in Pregnancy to see whether others have a choice and I'm being extremely unreasonable to expect any kind of say in when I get sliced open.

I guess I'm just an unreasonable git then.

buildingmycorestrength Thu 21-Mar-13 10:31:41

I think in normal circumstances you might not get much choice. If you were wanting it moved because it clashed with your manicure, yes, YWBU.

But I think it is fine to admit you are not in normal circumstances here! You and your DC have special requirements.

Keep plugging away.

redwellybluewelly Thu 21-Mar-13 11:25:01

I can rest a bit easier knowing that I will at least be able to have DD somewhere safe that can look after her on the day and also the day afterwards so DH can be with me.

Thanks you for the support on here everyone, I do truly appreciate it.

buildingmycorestrength Sun 24-Mar-13 15:35:02

Redwelly hope all OK. Glad you have a plan for oldest's childcare, big weight off your mind.

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