Struggling with no support

[Luckyme30]

But of a long one....

After my GP referring me to the Perinatal Team at my request (I’m 7 weeks pregnant) I had an assessment last week and they called today to say that basically I’m a low priority and have referred me to talking space for talking therapy!! I know I may sound ungrateful to some but I feel really let down by this service - a little back history is I’ve had 3 terminations due to Tokophobia (an extreme fear of pregnancy) and have been on antidepressants and suffered anxiety last year so much so I couldn’t leave the house for a period of time.

I asked my GP for some extra support as I really wNf to get through this pregnancy - she was sure the Perinatal team could help me.

I hate to say this as I really do love our NHS but I feel thoroughly let down and feel I’m a high risk, I don’t want to terminate this pregnancy but I really need support not just in the form of a phone call once a week/every two weeks 😞 feel so let down and not sure how I’m going to get through this pregnancy 😞

I just broke down in tears on the phone when they told me but I was told I’m deemed low risk and that they are dealing with people in mental health crisis I feel like I am/will be in one!

I poured my heart out to these people last week when they came to assess me and just feel so scared like I’ve no where to turn :(

Not sure what I want from this post - maybe if anyone else has had experience of this, right now I’m hysterical as I guess I thought I would receive some kind of support from a mental health team rather than a talking therapy (which I have tried previously).

I have had 3 terminations due to lack of support (sorry I know people will have strong views on this) I’m not a bad person and really want to see this through but my phobia is so strong :(

I can't totally relate to you !
I had two miscarriages last year and I'm now 20 weeks pregnant. The whole first trimester I was a mess! I was absolutely terrified, anxious, scared.
& there is no bloody support! I went to the doctors like yourself in the end & said I need help for my mental health and anxiety. Because i could only focus on the negatives or what may happen or what this pain was and what's happening to my body is it normal? I was crying most days :(
I was referred to perinatal group like you & also at a low risk! It takes 2 weeks + just to get a phone call & it was just an over the phone talk. Don't feel it helped at all.
So I'm sorry I can't help no more but wanted you to no I also felt let down to and it's not just you.
There is a charity group called i talk and you can self refer and have 1 to 1 appointments I believe. Maybe worth a try. But really like me you need extra support from Midwife's & unfortunately that service doesn't seem available :(

@pollypocketrocket I’m so sorry that you went through this too! It’s just not fair!

I know our situations were slightly different but it makes me sad to think that we are all being encouraged to talk about our mental health but when we seek support it’s just not available!

A phone call every 2 weeks won’t get me through this, yes talking to someone will help but there’s so much more support that they offer to people with underlying mental health conditions!

I’m not sure what sort of crisis I need to be in for them to take me seriously and offer me further help and guidance.

Thank you for reaching out and so sorry that you’ve had this experience too!

I know someone else who had much more support in the form of specialists midwives - I think it depends on area too.

I actually think your being very selfish given the current situation going on in the country and NHS being pushed to there limits as it is, I get you need some sort if help but you didnt miscarry you chose to have a termination x 3 they are offering you what support they can at this moment in time so suck it up and go with it and in a few weeks or mo ths when things calm down in the country ask for more support and advise them its mot enough but you really need to give it a go before saying you need more support or pay to go privately, my sil has private and even hers at this current time is going to be done via phone due to virus so your not the only one have you thought that might be the reason ??

@khall84 exactly the type of response I expected from someone who has no idea what it’s like to live with a phobia? Or do you but you can’t comprehend that someone could possibly fear childbirth/pregnancy because it’s made out to be all roses!

Please keep you negativity to yourself
By the way I have paid privately to see a counsellor for many years!

You clearly have no idea what Tokophobia is so I suggest maybe you go and do you research before you criticise it any further!

You are the perfect example of what’s wrong with society!

Just to add nothing at all to do worh the current situation in the NHS - it’s mental health!!

Just like any other illness! Mental health.

I’m guessing you don’t have phobias and you’ve been lucky enough not to suffer with your mental health so you couldn’t possibly understand my day to day experiences/ feelings

What an awful response @KHall84 when the OP is clearly struggling.

Perhaps you cannot relate to her personal situation but there's no need to trivialise her feelings and plea for help. If you don't have anything supportive to say, then please don't leave judgemental comments that certainly won't help her whatsoever.

Seeking help is never easy and everyone's issues that are important to them, are valid.

OP I am sorry about your current situation. I know it's challenging for you but could you request your GP to support your case a bit more firmly? It shouldn't be that you have to get even more desperate to get heard. I also saw my GP for similar reasons after two miscarriages and needing some help and was declined any support because I wasn't suicidal or had dark thoughts.

It is a hard time for you, I am sending you my best wishes. Continue seeking help and push for support.

@luckyme30 I actually do know about childbirth as it's my 2nd and no my 1st birth was definitely not all Rose's neither has this pregnancy been I have also suffered a ectopic so actually am very anxious and I have suffered with mental health in the past and have brother who really suffers so I have a very good idea and i have heard of your phobia before and Its not that I dont havevskme sympathy for you hence why I said try out the phone support first and then ask for more support our mental health care is very stretched and count your self lucky you can even get phone help my brother has been told 12months before he can see anyone sane as my friend who has on numerous occasions tried to committ suicide waited 14mobtgs to even get an appointment now these people are high risk and need to see someone you are being offered support take it and count your self lucky you can get pregnant when many woman cant and am sure I wont be the only one thinking the same x

I’m sympathize with you and that you feel that your not getting the support.

But I also agree on the current epidemic, the NHS is pushed. Whilst the mental health nurses will not be based in the IC units, or a&e departments, many might be in self isolation.

I have MH issues, and severe anxiety that I wouldn’t get through this pregnancy. I’ve had 7 miscarriages. This gives me panic attacks, nightmares, depression, so similar experiences to tokophobia. I also have a huge phobia of needles.

My nurses can’t give me my daily injections, because I’m high risk for the virus and high risk pregnancy. I understand, so instead of getting (even more) anxious, I’ve made arrangements with my neighbours to help me. My GP has called me today about my mental health, to check I have my medication and I’m ok. My midwife has booked me extra checks, and scans. But I understand it will be awhile before I get my perinatal Care. I’ve look at ways I can distract myself to get me through the next 12weeks.

All I want to say, is that look if there are any people who may be able to help you, charity groups, people on social media who may be able to offer support, at this current time, see if there are alternative support branches. The NHS are being brilliant with me.

@LASandOtto thank you so much for your support I totally understand that my situation from anyone looking in from the outside looks like I’ve made past choices for the fun of it but I want to assure people it’s never been easy and is part of a phobia which I am doing my best to overcome because ultimately I’m not a band person and I do want to be a parent but I have difficult processing pregnancy mentally.

My GP is very supportive of me, I’ve had many issues since my last termination due to damage it caused Scar tissue and I’ve had surgery to remove the scarring and now suffer from PTSD and can not have any type of gynaelogical procedure without needing to be under a GA.

I’m very sorry that you too have suffered wirh the lack of support, especially given your circumstances. We’re you able to receive any further support at all?

They have said that the letter confirming their decision about treatment is being copied to my GP so I will give her a call next week to see what can be done.

I have seen a counsellor privately which was helpful but I do need more support to see this through, I’m not sure people understand that actually this has had a massive impact on my overall mental health.

I wish I could pay privately to see a Perinatal mental health specialist but have not found a service that is not NHS, they are so specialist.

@KHall84 I didn’t say know about ‘child birth’ I said ‘fear of childbirth’ just because you have experience of childbirth does not mean you understand in any way my phobia!

Also your use of ‘I understand YOUR phobia’ it’s not just MY phobia! Many many women suffer with this phobia - open your eyes! Just like any other phobia except mine is more ‘socially unacceptable’ god forbid a woman fears being pregnant!

I get all of your points and I am very sorry to those of you have suffered losses/can not get pregnant, this post was not meant to cause offence to anyone. I understand your struggles too.

As explained above I now suffer PTSD from a terrible experience which means I have to be put to sleep for any gynae procedure - so it’s not just that I feel ‘I can’t do this’ there’s a lot more to it.

I’m sorry that family members of yours have not received support - again I sympathise hence I’ve paid for a private counsellor for the last 5 years.

I’ve had surgery privately but I also work full time and pay into the NHS, also previously worked for the NHS. So I think I do deserve a little bit more support than I am getting.

I have never said in my post that I wanted to be seen immediately for my problems and I understand with the current crisis that things may need to take a backseat. I was simply saying I need more support not I WANT it now!

Please try and be respectful of other people’s issues - we don’t all think the same, we all have problems - mine just seems alien to some - do you think I want to feel this way?! I can assure you it’s no fun, I want to enjoy my pregnancy but my mental health doesn’t make it that clear cut!

@Luckyme30 no, I've had to rely on other support through communities online, charities, I took up yoga and mediation, and I muddled through. It's not addressed a lot of the deep rooted issue, but at the time I was not classified as needing the service so I felt I had to source my own support.

Sometimes just talking in general can be of some alleviation, recognising your situation and your emotions.

See how you get on with the service they can provide for now, and again, push for more if you need it. X

And also to say - I don't judge women who have terminations. We all can never exactly put ourselves in the shoes of the person who's suffering, we all have our own stories and situations. I know we do all judge at times as we have options, but it's true that we never often see the full picture. X

@Luckyme30 am not going back and forth but I di wish you alm the luck with your mental health and your pregnancy x

@LASandOtto I was thinking of trying yoga so may give this a go.

I will do my best to get through this time.

I am (as I explained to the lady who called me back) so grateful to them for coming to see me but I guess I was expecting more support but I will find the support myself if need be.

Also thank you for understanding, I know to some it may be a difficult thing to comprehend and this is why I feel so much guilt about my terminations because there are many people who struggle. From the outside my situation may look clear cut but it certainly isn’t.

I’m glad there are people like you out there!

Different circumstances but I didn't find the perinatal team that helpful either - they were quite quick to assess me but it felt like a tick box exercise. I'm lucky in that I have/had good support from my private psychiatrist so they weren't too worried. In terms of the low risk thing, I wouldn't read too much into it. Med/High risk are the people likely to be sectioned and at imminent risk of hurting themselves/others. You don't want to be higher than low risk! What I did find useful was that I had a specific midwife - she wasn't a MH midwife but at my trust in some circumstances you can be referred to the case loading team. This meant that I always had the same midwife and had very close contact with her throughout my pregnancy; I don't know if that's something worth exploring? Wishing you all the bestZ

@mynameiscalypso thank you so much, I’m going to ask my midwife (at my booking on appointment) in a few weeks if this might be an option for me.

If I’m honest I guess I thought that by being referred to Perinatal that I would get that sort of support which is all I feel I neee just someone at the end of the phone to discuss immediate concerns and ask for help when needed :)

Thank you for your suggestion x

In my experience, all the team offer is medication, talking therapy (or group therapy) and the possibility of inpatient admission if needed. They didn't seem massively clued up on the whole pregnancy/birth thing!

I think maybe that is all they offer but for some reason I guess I’m my mind I had pictured that they might offer more midwife support - such as a listening ear if you’re feeling a bit down or like me struggling to come to terms with my body changing and the prospect of a baby..

I think the thing is that everyone expects us as women to be completely happy and fine and dandy about the changes but in reality for some people they do really struggle and the regular midwives just don’t have the time (due to workload) to be able to support that, I guess that is what I thought the Perinatal team were there for but I think I’ve come to realise that it’s more for people with serious mental health issues and who need inpatient admission etc.

I think there really is a support service missing but with the nhs under so much pressure it’s not going to change any time soon :(