Guest post: "Welsh women enduring multiple miscarriages need better care and support”

[MumsnetGuestPosts]

In March of this year I suffered my fourth early miscarriage. Anybody who has been through the heartbreak of miscarriage will know what a devastating and lonely experience it is. To go through this repeatedly is agonising. Every time it happens the worry that something is wrong and that there is an underlying cause of your miscarriages grows. My biggest fear has always been that my pregnancies have been viable and my miscarriages might have been preventable. I therefore found it very difficult to accept after my second loss that the NHS would only offer tests for the causes of my miscarriages if I went through this devastating experience for a third time. Thankfully, I was incredibly fortunate to have a successful third pregnancy, and now have a beautiful two year old little boy.

At the end of last year my husband and I decided that it was time for our son to have a little brother or sister. Naively, I let myself believe that everything would be fine this time, only to face that familiar sinking feeling when I noticed some spotting at five and a half weeks. This was my third miscarriage, which would be closely followed by a fourth a few months later.

The one thing that I took from this was that now, surely, somebody will care. I will not be on my own anymore, I will stop hearing 'oh, it’s just bad luck' and I might start to get some answers about why this is happening to me again and again. In researching my options, I came across the Tommy's Charity and the amazing work that they have done setting up specialist miscarriage Research Centres. After checking out that I met the criteria for referral, I spoke to my doctor. It was at this point that I became aware of the serious lack of miscarriage care and support that is available in Wales. Not only this, but the Welsh NHS actively prevents women in Wales from accessing specialised care in England. After several meetings with my local Assembly Member, letters to the Welsh health secretary and the local Health Board (the Welsh version of CCJs) it was confirmed that there was no way that I could gain a referral to any of the Tommy's Clinics. I still struggle to understand how I can pay into the same system as people living over the border and yet I am not able to access the same care that they have access to.

The policy in Wales is for women to receive their care in Wales, women need to have exhausted options in Wales (and none of this care is specialised) and need the support of their consultant before they stand any chance of getting a referral to specialised services across the border. This is a harrowing experience for parents and can take a painfully long time. Even if referrals across the border were easier, the distances involved would make accessing this care prohibitive for many. In my case it took four months to get to see a local consultant where I had an examination and two blood tests – That was over three months ago and I am still awaiting my results. I thought that, at the very least, I would be offered a reassurance scan during my last pregnancy – my doctor tried, but the hospital wouldn’t see me.

The bottom line is that women all over Wales are having to endure the devastation of multiple miscarriages and are being given very little hope of understanding why this is happening to them. This lack of care and support at one of the loneliest and most difficult times in their lives is leaving thousands of couples feeling isolated and hopeless.

This lack of care for Welsh couples is utterly unacceptable. I have therefore started a petition calling on the Assembly for Wales to provide quality, specialised miscarriages services for mums in Wales. I hope that we can achieve much better care for women in Wales by showing the health secretary that there is a need for these services. It would also help if people who have experienced problems in accessing quality care in Wales could share their stories in the comments below or on the petition. This information would be invaluable in convincing the health secretary that the current set up is not fit for purpose and that it is having a detrimental impact on the wellbeing of thousands of women in Wales.

Take a look at Jessica's petition here and find out more about Baby Loss Awareness Week here.

[PlayOnWurtz]

3 consecutive miscarriages (meaning a successful pregnancy resets the clock) before testing is common and sensible NHS policy UK wide.

I agree miscarriage care needs significantly improving but, as someone who has had 5 consecutive losses, support the 3 misscariage before testing rule.

[LisaSimpsonsbff]

I would be all for supporting any policy for improving recurrent miscarriage care but I am English, have had three miscarriages (and no children) and had to see a Tommy's centre (I went to Coventry) as a private patient, and I don't think this is at all unusual. There was never any suggestion that I would be referred to anywhere but my local hospital (who have been... mixed) by my GP.

[ottersHateFeminists]

You have devolution and free prescriptions.

It's almost like there isn't a magic money tree and that limited resources do actually run out, isn't it.

Difficult choices need to be made as not everyone can always have everything they want and being chosen to be a guest poster doesn't mean that your needs are more valid than others. In fact, it seems very easy to argue that bearing a child is a privilege and (however sad it is), there are numerous more deserving ways to direct scarce resources.

What funding would you cut to direct to couples who keep having miscarriages?

[Josiah]

ottersHateFeminists

Very well said. I am not Welsh but live in Wales and completely agree with you.

[Josiah]

Also, why do we need a sad face picture? We all know how devastating a miscarriage is.

[JellyfishPieForTea]

I'm not sure the situation is much better for women in England. I was apparently eligible for the recurrent loss clinic after my second loss at 16 weeks, but no one told me this. I was also given a hard time for attending the EPU in my third pregnancy. I agree that miscarriage care should be better for ALL women though. Best of luck to you. Miscarriage is shit.

[AssassinatedBeauty]

I don't think this is about the 3 miscarriages rule, I think it's about accessing specialist care. In many parts of Wales the nearest facility is often in England, and many services are catered for in England. I'm not sure why miscarriage care must be only dealt with in Wales when this doesn't seem to be the case for other services?

[PlayOnWurtz]

And in England the specialist care is often not local either (mine isn't). With some conditions you have to travel to get the care for your needs

[AssassinatedBeauty]

Yes. That's not what I mean though. The services are local, but people in Wales aren't allowed to access them. That's not the same as there not being a local service and having to travel.

[Allthewaves]

The three miscarriage rule is pretty standard and I don't think there's great provision in the rest of the UK tbh. Waiting times are long and there isn't support.

[specialsubject]

Yyyy to free prescriptions meaning Wales has an even more stuffed health service than England. The welsh do not pay into the same system.

I'm in England and am two hours from most specialist care. The eight minute ambulance and a choice of hospitals is London. Maternity care of ANY sort is an hour or more away from here.

None of this helps the op, of course, or minimises what has happened, but this post is very misleading.

Want better care? We all need to pay more. But we won't elect parties that promise to raise taxes.

[SpiritedFlame]

I think the lack of care is astounding.

Not even just the being able to access specialist centres but psychologically, it is really poor.

Before my first born, I had 5 miscarriages. They couldn't find a reason why after some basic tests but possibly it is just my body as I had one healthy pregnancy.

I have since had two further miscarriages. For me, what I have found hard is that there isn't support. Even the professionals seem to mininise it and that is hard.

[fbradf01]

As someone with 5 consecutive miscarriages I agree support should be equal across the country. Whilst I'm fortunate to be in London I have also ended up seeking private care as yet to no avail and agree this is common even if it is unfair.

I know I will be roasted for my next comment but I also think that after one successful pregnancy and living child it's not unfair to reset the clock. It's the same for IVF no funding if you already have children. The pain of a miscarriage doesn't change regardless of your situation but the pain of being childless vs. Having one or one less child than you would like I do feel is different. Channeling spending into these people and also the physiological issues (I had some great counselling from a charity called petals) could make a difference. This could allow for people with no children but 2 miscarriages to be seen earlier Or for people with significant losses to have more testing on the NHS.

Not meant to be harsh on mothers with miscarriages only as a vote for the non mothers out there so desperately sad to have just one

X

[ChinkChink]

Vote Labour people.

[arrrrghhwinehelpswithteens]

I'm in Wales. I had four miscarriages (with DH) before I had DD. while we weren't offered tests to find out why, I was very closely monitored in my last 3 pregnancies (2 of which failed) and all the way through the successful one with DD. I don't think it's necessarily a Wales -wide thing (although the situation may have changed in the last 16 years); more a location thing. And I have friends over the border who had to pay to access the Tommy's tests, as well as ones who were referred.

What is needed are national (& by this I mean UK-wide) standards of care for miscarriage / stillbirth.

I also hope you manage to have the brother or sister you are trying for.

[2furbabies]

M

[Becles]

This is a really tough and emotional area and sympathies for those who've been through a loss. I've been there and it's overwhelming.

It's a sensible approach to medicine not to jump straight into testing, but to see if there's an underlying cause or horrible, unfair bad luck because sadly not all pregnancies are viable (if you hear hoof beats think horses, not zebras)

There can't be a national standard of care as there are 4 separate NHS organisations in the UK each making decisions about priorities and spending.

NHS England doesn't have free parking or prescriptions while others have a different stance.

You need to lobby your local NHS body with suggestions for how they balance the books, but I have a feeling that the underlying theme of the OP was 'get the English NHS to subsidise the others, with no reason why we need to cut back elsewhere'.

[FlakeBook]

Apparently the cost of administration for the prescription charge is greater than the cost of free prescriptions according to the Welsh Assembly Government.

It is the same in other areas of health care, assassin. Care takes place within Wales and it us a fight to get funded for treatment across the border. Look at the Hawl I Fyw campaign re cancer treatment.

[ottersHateFeminists]

@ChinkChink

It's their fault that the NHS is fucked.

[PigletWasPoohsFriend]

Vote Labour people

Who are in charge in Wales.....

[SunnyCoco]

I think articles like this, pitting women against each other, do nobody any favours.

I live in London where we supposedly have all this amazing care and funding, 8 minute ambulances and specialist clinics. The reality is you can't access any of it as there are millions of us living here!
These types of article do make us English think well you have free prescriptions and so on. And regarding miscarriages England is certainly not the land of milk and honey - my 'care' has been practically non existent after multiple losses.

All of us on this thread have suffered multiple losses and trying to sow division helps nobody. We ALL need better help and support.

[SunnyCoco]

I think articles like this, pitting women against each other, do nobody any favours.

I live in London where we supposedly have all this amazing care and funding, 8 minute ambulances and specialist clinics. The reality is you can't access any of it as there are millions of us living here!
These types of article do make us English think well you have free prescriptions and so on. And regarding miscarriages England is certainly not the land of milk and honey - my 'care' has been practically non existent after multiple losses.

All of us on this thread have suffered multiple losses and trying to sow division helps nobody. We ALL need better help and support.

[Shiraznowplease]

Totally agree better care is needed, I have had six miscarriages and each time my Gp has been totally amazing the hospital experience was however dreadful. I had three missed miscarriages and twice was put in a six bed room with five other women having abortions. I sat and sobbed for my desperately wanted baby while on one occasion the woman opposite shouted about being kept waiting as she wanted it 'rid of' so she could go out clubbing 😱 Long wait for multiple miscarriage clinic so went private and found it great and now have 2dc. I was lucky that we found afford it but feel sorry for those that couldn't.

[PlayOnWurtz]

Are any of you aware of the debate in parliament on baby loss that has been going on this evening? I watched an hour of it and it was really respectful, informative and relatively well attended

[Snoopysimaginaryfriend]

Another londoner here who thinks this is a national problem not just a Welsh one.

After three consecutive miscarriages I decided to go private whilst I waited for my nhs appointment at what I thought would be a recurrent miscarriage clinic. By the time my nhs appointment came around I was pregnant again and receiving private treatment which, although cheap as chips, isn't available from the NHS. I then discovered I had actually been referred to an NHS IVF clinic which would have charged me for treatment. Two successful pregnancies and two DDs later I have never received so much as a reassurance scan from the NHS. If we couldn't afford private treatment I doubt they would be here.