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Bereavement

Cost involved in private treatment at St Mary's...????

26 replies

desperatehousewife · 12/06/2006 18:42

Anyone got any idea how much I might be looking at if I were to go to St Mary's Paddington as a private patient and see Prof Lesley Regan?

The NHS waiting time is 9 months (how ironic eh?) and I can't possibly wait that long to see someone following 2 stillbirths.

any ideas - even guesses appreciated!

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alex8 · 12/06/2006 19:02

I don't know about this hospital but I have been going to another west london hospital privately. Its about £100-£115 per visit. Blood tessa are about £35 and then the list escalates from something like £150 for a scan to £250 for an hsg to £2000 odd for a lap and dye. I'm not sure what sort of things they would do for you. You could ask them to send a price list.

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desperatehousewife · 12/06/2006 19:17

thanks - good idea.

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oinker · 13/06/2006 17:02

DHW,

Did they say if there was any chance of being seen earlier if anyone should drop out of the wait?
I reckon it will be quite expensive to go private.
I am at St Marys now and they do lodsa tests.

You are looking at having DNA, Chromosone, Thyroid,Genetics blood tests. Your partner will have to have a blood test too.
If you have had the above tests done before they do accept the hospital reports.

Though I am at the clinic (been once) I have seen one of her doctors. It is very busy but they are very orderly. There is hardly any waiting. You pop into one room for a consultation. Once you are out the next doctor is waiting to test you for something else. It's a bit like a conveyor belt.
They will also do scans and possibly HCG xray.

If you want me to help (pop into the hospital for anything) just ask I can go past it when going to work.

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oinker · 13/06/2006 17:05

On a negative point...

It isn't very nice there. It needs a bit of a face lift. It's a bit dreary. It seems clean though.

It may just take time to get used to as the last hospital I was at was quite new light and airy.

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KateF · 13/06/2006 17:21

I trained at St Mary's and Lesley Regan is the business. Unfortunately that is why she has such a long waiting list. I don't know her private charges but from what I remember private patients don't seem to get much more than NHS patients - same doctors etc and the private wards are not great either. Sorry for your distress, I can't imagine how you must feel. Why not phone her secretary and ask about private charges?

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desperatehousewife · 13/06/2006 18:57

i wonder if i can have tests done on nhs and see her privately?

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oinker · 13/06/2006 19:17

You could have tests done at your local hospital and then perhaps use the results. This may save time.

Do you have any idea how long the wait is to see here privately?
Will they guarantee you see her or a member of her team?

I did read a notice the other day whilst at the clinic which said if you insist on seeing her the wait could be a while and they would make you another appointment. This would mean a delay in treatment etc.
They have a team meeting regarding individual cases b 4 a decision made on treatment. So even if you don't see her she would have been informed and would have to approve anything that is done.

I know this for a fact cos the doctor I saw apologised for being 5 mins late due to the morning meeting. I saw LR come out of the breifing room with him and others in her team.

The tests take about 6 to 10 weeks to complete.
The tests will have to be done after your first bleed. I suppose you are looking at a minimum of 4mths b 4 everything is done.
I know the wait is horrid but I don't think there is any way round it.

I hope this little bit of info helps. Smile

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desperatehousewife · 13/06/2006 19:24

fantastic info oinker thanks. what do you mean tests done after first bleed?

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oinker · 13/06/2006 19:30

The blood tests they do have to be done after your first period. This ensures your hormone levels are back to normal (low).
This will then give a truer reading for samples they are checking for...Chromosones, thyroid, dna etc.

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desperatehousewife · 13/06/2006 19:35

oh i see. I know that tests are being carried out at the moment at my NHS local hospital - they tool 25 vials of my blood for testing, the placenta, the baby and did an amnio - so I'm hoping that the testing will be quite throrough...but who knows. I'm wondering if I can take all these results to Lesley Regan's team and see if they can make anything of them...thing is i just don't understand the system and don't understand what will be tested, and if once it's tested can anyone else see the results and will those results even be of any use to another consultant.

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oinker · 13/06/2006 19:43

DHW..

I know for a FACT THAT BLOODS TAKEN WHILST PREGNANT OR DURING M/C are not going to give a true analysis of your blood. You get two different readings if you do tests whilst pregnantor during m/c than whilst you are notpg. LR will insit you do tests when not pregnant and during normal cycles.
I went to an open forum meeting she was holding and a woman asked about blood tests and she stated then that bloods whilst p/g or straight after m/c were not a true reading.
I am still waiting for A/F and on day two of my cycle will go to hospital for further blood tests. They did some on the 6th June which was 4 weeks after m/c. They are going to do more on 25th July when my bloods will definatley be back to normal.

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oinker · 13/06/2006 19:46

They will definatley use the test results from your hospital.
They are using my test results.
I got my histology result today which shows no abnormalities. (GP told me) I was told by LR's clinic to get them and drop them off at the hospital.

Where in the country are you?

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desperatehousewife · 13/06/2006 20:57

in brighton

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scotslass · 13/06/2006 22:32

Hi DHW,

I don't know anything about the costs of having the tests privately, but I was wondering what sort of help you were getting to have your tests done locally.

I live quite close to you, and after I lost my twins I had lots of testing(no recurrent losses though) in Brighton and my local hospital in Haywards Heath.

After I lost them I was put in contact with the bereavement midwife who was able to help me get what I needed from the medical staff in terms of follow-up and she was often able to 'pull strings' .

She also runs a support group once a month for women/couples who have suffered a stillbirth or neonatal death. It is based at the PRH but anyone is able to attend.

You may have already been put in contact with her, but if not it may help to have someone batting for your corner?

I can give you more info if you think it might help.

x

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desperatehousewife · 14/06/2006 09:46

S-lass - so sorry you lost your twins. I would really appreciate any advice/info you could give me. It's 3 weeks today and i'm feeling very low for the first time since it happened.

I just feel so in the dark about what is happening in terms of testing etc. Consultant is on holiday for 3 weeks that kind of thing. Feel very very alone at the mo.

thanks so much
dhw

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oinker · 14/06/2006 09:56

DHW phone St MArys and ask them about the private treatments. They will send you a booklet/ leaflet of prices they must have them there.
The receptionist is really nice. She is Italian so has a bit of an accent but very helpful.

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scotslass · 14/06/2006 20:15

I'm so sorry you are feeling so low, but you have been through so much and it is suprising that you can even function at all.

The m/w's name is Pam Parsons and she is lovely and tries so hard to help in a practical way. The support group is on the first friday of every month at 7.30pm.

You can contact her through the delivery suite at the PRH (01444 441881). It would be best to speak to her before you attended, just so she can speak to you a bit beforehand.

I attended the SANDS group in Brighton a few times, but I never found it all that helpful. I think more because I was looking for advice and practical assistance in having a link to the medical services that Pam can sometimes help with.

If there is anything else I can do to help just let me know and I hope you get the answers that you need really soon.

x

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desperatehousewife · 14/06/2006 22:31

thank you so much for this info - i will indeed call her and have a chat. Which hospital is that?

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scotslass · 15/06/2006 10:31

It's the Princess Royal Hospital in Haywards Heath. My name is Lorna if she should ask how you know about her.
x

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bundle · 15/06/2006 14:55

dhw, I've a friend who's had 5 early m/cs who's seeing a lovely specialist up in Liverpool (she lives in Scotland). she had LOTS of blood tests before they found some kind of antigen thing, which they've seen in women who miscarry, and they're treating it with daily heparin injections, as it's thought to be linked with clotting. LR was on one of my programmes ages ago and was v nice and my colleague who has antiphospholipid syndromem was treated by her too. I do hope you get somewhere (and fast) with this, xxx

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Marina · 15/06/2006 15:13

DHW, a friend similarly placed to you investigated seeing Lesley Regan privately and found her private referral list was not that much shorter than her NHS one.
Oinker's advice to ring St Mary's and get the lowdown if you feel up to it is good I think.
And scotslass is so right about the instant and lasting value of a really knowledgeable and sensitive bereavement midwife :) I was lucky enough to have access to one and she was so much of a support at the hospital.

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Marina · 15/06/2006 15:14

bundy I read/was told somewhere that the standard NHS test for antiphospholipid/Hughes syndrome did not identify ALL types of this syndrome, and that an additional, more complex test that is not routinely offered, is also essential in recurrent m/c investigation.
Do you know more about this?

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meysey · 19/06/2006 12:17

Hi

I looked into this a bit when I had a 6 month wait at St Mary's a few years ago. Doing everything privately with any of the doctors there gets very expensive as there are so many tests involved, and then you may need treatment after that. But you can phone up and get the information easily.

Also please don't get your hopes up that they will have instant answers when you do get your NHS appointment having sent them all your test results already. What they didn't tell me in advance was that there are a whole load of other tests that then start and can take months. I would estimate that the time between going on the waiting list and then completing the tests was a year, and you cannot TTC in that time or it confuses the results. This is very frustrating, especially if you are an slightly older woman.

BUT stay hopeful. They couldn't find anything to treat in my case. Suggested stress was a factor. I was lucky enough to conceive as soon as I got the goahead, cut down on work, and had a healthy baby.

Good luck

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alexh · 19/06/2006 14:31

I see Lesley Regan privately at St Mary's. It is around 100/120 a visit plus all the tests which are very expensive. she is fabulous. But its almost impossible to get an apppointment with her in a hurry even if you are a private patient she is so busy. So you may be better off waiting to see her on the NHS

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desperatehousewife · 21/06/2006 08:57

meysey and alex - thanks for your info. Yes I've pretty much started to try and resign myself to the fact that this is going to be one hell of a long journey - and even if we are given the go ahead to have another baby - it will be the best part of 2 years before I can actually hold my own baby (if i'm lucky). This is just such a hideous, scary thought. My son will be six by then and I can't bear the thought of living in limbo for another 2 years - it's just not fair on Mr DHW or my son.

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