Anybody been referred to Tommy's Misc... - Fertility Network UK

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Anybody been referred to Tommy's Miscarriage clinic?

12 Replies

This new charity for women with recurrent miscarriages has been advertised the last few months. Do you know how to get referred? I will call them tomorrow.

However, In the meantime if anybody knows. Please share.... Thank you.

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12 Replies
baby2016 profile image
baby2016

I'm contacting them tomorrow too 😊 The professors running it are the people who did my nk cell test in coventry and they wanted to know any updates on my progessions etc as they also advised strongly for me to have both my tubes removed after seeing fluid in both of them at my scan for the nk test. I have also just done a big fundraising event for the centre which made me feel like I was giving something back to all the research they do xx

in reply to baby2016

Brilliant. I would love to do something like that too. How did you get refered to them ? I was looking until nk testing myself. Did you get refered by GP to them? And did they refer you back to NHS to get tubes removed ? X

baby2016 profile image
baby2016 in reply to

Hi Orangepie, you can self refer to the clinic, heres the link:

uhcw.nhs.uk/our-services/a-...

Its costs about £370 and all the money goes back into research.

Re my tubes, i had had 2 ectopics that my body natural got rid of but at xmas was taken into hospital with severe pain on my right side. When they scanned me they could see my tube was full of water. I never thought anything at the time as no-one said anything and just said it would all be discussed at the fertility appointment i'd eventualky been given after my last ectopic a few months before. I happened to go for the NK cell test 2 weeks later an they have to scan you to check your womb thickness, I was cheeky and asked if he could see the fluid in ny tubes to which he could, but not on my right side, but on my left!! He said normally if you get fluid on one side it will normally mirror in the other tube. I then had my fertility appointment of which they had the scans from the fluids and was advised for me to start ivf both tubes needed to be removed as the fluid can be toxic to embryos. That was Jan, tubes removed in March!! The clinic in coventry phone you with your NK results and email you advising what medication should be taken and when for whej you next get pregnant. Hope all that helps xxx

in reply to baby2016

Ok. Is £370 a one off fee? Or do you have to keep paying for tests and treatments? I didn't know you could self-refer to Tommy's- I'll contact them. I need to get every single possible test for early miscarriages. If you include the very early losses , it is probably 7 or 8 times. I've just had enough and want to solve the issue if possible before next time. I have had a few tests all have come back all clear. Except thyroid antibodies which are elevated but not dramatically so I am in two minds if it is this or not now...Just called them and got such a wonderful response.

baby2016 profile image
baby2016 in reply to

They are brilliant 😊 Its a one off fee and includes a scrape. They are the experts in the implantation field, and i'd far rather give them my money to put straight back into research then be ripped off by a private clinic. I've heard of some people paying over £1k for the same test!! And only for a blood test and not the biopsy. You'll have a small biopsy taken of which is uncomfortable but lasts about 20seconds but thats it then, and worth it if it gets some answers. Keep you eye on the miscarriage associstion website as they are often running trials for free. I had a thyroid test done through one of their trials for thyroids that aren't normally tested of which thry think is a link. Any test I can find an be a part of I will do, even if it doesn't help me it all goes to helping women of the future. Good luck with everything and thanks for your kind words xxx

in reply to baby2016

And sorry to hear of your awful times removing tubes and nothing been done about it earlier. I hope you get your success very soon...

Hollibob profile image
Hollibob

tommys.org/our-organisation...

The first step is to visit your GP.

The NHS follows guidance which is set out in NICE guidelines and these say that the GP should refer you after you have had three miscarriages. Most doctors realise that this can cause considerable distress to women and many hospitals will investigate after two miscarriages.

After one miscarriage most women go on to have a healthy pregnancy, so it is unlikely you will be referred for further investigation after one miscarriage.

Talk to your GP, explain how you are feeling and ask to be referred as soon as possible.

To be referred to a Tommy’s miscarriage clinic, ask to be referred to a named Tommy’s unit when you visit your GP. The clinics are based at the following sites:

Birmingham Women's Hospital

University Hospital Coventry

Queen Charlotte's & Chelsea Hospital, London

One of the benefits of doing this is that you will be offered entry into a research study which may trial the latest tests and/or treatments.

The Tommy's National Miscarriage Research Centre will comprise a partnership of three universities: the University of Birmingham, the University of Warwick, and Imperial College London. The three sites will run specialist clinics enabling over 24,000 women per year to access treatment and support, and participate in Tommy’s research studies.

in reply to Hollibob

Thanks very useful. Just saw this on the website.

in reply to Hollibob

Just called them and got such a wonderful response.

Hollibob profile image
Hollibob in reply to

That's great. What did they say/advise?

in reply to Hollibob

They really listened and spoke the midwife and said I should tell the GP to be urgently referred to them and gave me all the details of their clinic. That is my mission tomorrow. Wish me luck.

Hollibob profile image
Hollibob in reply to

You should be fine..it's no skin of the gp's nose as all they have to do is compose a letter??

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