MMR single vaccines just a bit of info please.

[leander]

I feel a bit nervous posting this as i dont want to start anymore arguments,but we got our app through for ds's mmr.We would prefer to give him the single vaccines but people keep saying they are not licensed and some say they are.I will go and talk to my hv about it but I thought the combined wisdom of mumsnet may be able to tell me more.

I don't know if this is of any interest - sorry i didn't read the whole debate...
here are some research papers about autism... not linked all to MMR but to other potential/probable causes....
And this isn't from quack research as some might say but from hospital and research institutes

www.birthworks.com/primalhealth/databank.phtml?kw=autism

hmb- autistic children seem to havea bit of a raw deal. I know someone who's son was dx as autistic at 3- then at 5 it was discovered that he actually had fragile X syndrome. She said it was amazing as all these OT's SALT's SW's and god knows what else appeared out of the woodwork. His needs hadn't changed but his dx had. I perosnally think the problem is the children are so complex and have such differing needs that the NHS doesn't really know what to do with them. The most effective interventions seem to involve one to one therpay of whatever type and that is of course hugely expensive. I was keen to a get a dx as I thought it would help gain access to services. Since being dxed over 6 months ago we've received a SALT assessment (last week). That's it. Actually I'm being unfair we have been getting portage as well (although there are political reasons for that as officially we shouldn't get it when ds1 attends nursery).

I remember that article aloha- and yes I think he's right. i get the impression the DoH isn't very keen on that sort of research. Unfortunately most GP's even paediatricians are remarkably ignorant of even the most basic biological factors behind autism (I think secretly lots of them still believe it's something the parents have done-lol). The Autism Research Unit is running a conference soon on the biological basis of autism- I know they're hoping to encourage dr's and consultants to come.

I'm not sure I do have the enrgy to keep going hmb- I have mastitis today- and I know it's flared up as I've had such a pain in the a* 2 weeks, firstly with th lea deciding to cut ds1's support, and then finding out that ds1 probably isn't speaking becuase if hearing problems. The frustration of knowing that that could have been picked up last year if someone had actually listened to me is a bit too much.

I'm off to feel sorry for myself and curl up on the sofa with a hot wet flannel.

It is interesting how many autism specialists are parents of ASD children. My mum is a specialist teacher for autistic pupils ina secondary school and has done loads of work on it all, but I reckon this is because my eldest brother has severe AS. He ended up being educated in a Steiner School where they coul dcare for his needs appropriately, bacaue none of the mainstream schools took him seriously (they just thought he was being 'naughty'. And for years my parents had been telling everyone that my db had sexual problems/violence problems and could not live independently - so what did the council give him? An independent living flat! He has now had to move 400 miles away to a specialist NAS centre to live where he can be cared for appropriately. Interestingly, and I don't know what you would have to say about this (but would be VERY interested in your opinion) he developed autism and gut problems following having measles in 1977 when age only 1. I had had the jab with no complications but my sister had convulsions so they advised no more measles jags in the family. THe other boys got the jag after db was so ill woth measles, and all the next generation, including my kids, have had MMR. Have you heard of autism developing as an after effect of 'wild' measles? What are the implications of this for the MMR?

susanmt Hi - it's true that lots of schools still think that it's a behavioural issue. I've set up a support group here and people have told me of thir children being diagnosed- the HT then saying "I don't believe it" and excluding them!! As you know from other threads I'm certainly a fan of Steiner schools! And don't even get me started on SW and their understanding of autism- glad your db got a place at the NAS centre though- they're like golddust

There are certainly a few recorded cases of autism following the single jab, and there are cases of autism following an infection so yes your brothers problems could be linked to developing measles at one. Measles is a nasty virus of course- which is why the MMR makes me a bit nervous. Seems a bit crazy to put the measles virus (an immune suppressant) in with a virus which is known to alter the permeability of the blood brain barrier (mumps). Attenuated or not- just makes the possibility of a problem a little more likely in my view. Of course giving jabs singly doesn't make them risk free but if it makes the less risky then it should be worth doing surely?

Actually your brother's case demonstrates something that worries me. As you know one is young to get measles and I just worry that the less efficient and probably not lifetime immunity offered by the MMR (or single measles come to that) will mean that more adults get measles and more babies don't get immunity passed across the placenta. The thought of a say eight week old baby getting measles as they haven't receievd any antibodies from mum worries me to say the least. Measles outbreaks have occurred in 100% vaccinated populations so I don't think that erradication by vaccination is very likely. I would assume that your Mum had measles as a child- or must have least have picked up immunity (basically all adults were immune before vaccination unless they'd lived separated from everyone as measles is so virulent) so your brother was probably unfortunate to get measles at one - I just worry that we'll see more cases of this as the measles vaccinated generation go on to have children themselves (and then of course the low uptake of MMR will be blamed- when vaccination itself is actually at the root of the problem!).

mckenzie, you there? Just wanted to let you know the latest from the Elstree surgery and Dr Pugh's dodgy vaccinations....

apparantly they are now looking into using mouth swabs to check whether those children who received the botched vaccines have enough protection or not. Let's hope they get the go ahead for this. I know I would rather a swab than submit my toddler to more jabs in the way of a painful bloodtest.

I'll keep you posted if I hear any more.

cocococo, there is a big article in the mail on Sunday today. Apparently a mother had her child tested for immunity and it was found that she wasn't immune. Dr Pugh has refunded the cost of the jab and the blood test, some £175.

Dr Pugh does my DH medical exams for flying and always felt as though he was rather laid back about everything.

Hi Alibubbles will go out and see if I can get a copy, thanks for that. Dr Pugh has offered to give every child who is effected a free bloodtest and re-vaccination BUT I can't imagine my DH keeping still long enough to take blood.

Haven't met Dr Pugh yet but have heard that he's laid back!

I am so happy to have found this conversation. I am desperately trying to get in contact with elstree. My ds has had two out of three vaccinations there in the timeframe mentioned in the newspapers. i cannot get hold of the centre by phone and have not received a letter. Can i assume my son is ok ? If he is how do I get the third jab - where should I go? I know if I go and see my GP i'll be in for an "I told you so" conversation that i just do not want to have. Has anyone been able to get any information out of any other organisation ?

Shelleyb

I stormed down there two weeks ago to find out what happened. Lets just say it was less than satisfactory. My dd also had her measles in this timeframe. She also had Rubella a couple of weeks ago. Elstree were very shady about everything and the long and the short of it is we are asking for a refund and are going elsewhere. I in fact have a long letter from them in response to a letter from me this morning. The blood test is not an option for us. Can you imagine trying to take blood from a 17 month old and them sitting still for 30 seconds or however long while it's being taken ? I also don't want Elstree sticking anymore needles in my daughter.

The reason you can't get hold of them at Elstree is because they aren't answering the phone. When I was there the receptionist just let it ring. If you want more info, email me at [email protected] and I will give you copies of all the correspondence I've had and advice I've been given.

regardless of my opinions on MMR/single vaccines, I think it's terrible the way people have been exploited and now let down in this affair. shabby, very shabby behaviour, especially as tillysmummy says, they can't even be bothered to accept calls from anxious parents.

My latest reply to Elstree's crap response to my first letter this morning.

Dear Ms Hawkins,

Thanks for your prompt response. I understand the difficulty of the situation last Monday but nevertheless, in such circumstances provisions should be made to put parents minds at rest. I don't think that the clinic dealt with diffusing the situation at all well. As I said in my original email, I received a letter when I went to the clinic but that was it. My name wasn't take etc etc and I have received nothing in the post. Therefore if I hadn't gone down to the clinic I would have heard nothing like many other anxious parents. I am lucky enough to live near enough to go down in person, again, many parents don't live near enough and if telephone is their only method of communication, provision should be taken to ensure that calls are answered. You mention that staff were intimidated and under threat from angry parents, whilst I don't condone this, I would ask what do you expect ? Although it's not the fault of the staff they are there to answer questions. Every concerned parent naturally has a lot of questions and fears. I tried calling for a total of 3 hours over that weekend and that Monday morning. Most of the time it was engaged but when it wasn't it just rang and rang. That is why I had to resort to coming down in person. Nothing could be offered then except a couple of letters and a blood test appointment.

If I didn't receive a letter because Tilly wasn't affected (according to your letter) then I should have received a letter to inform me of this and reassure me after all the media speculation. I have received no such letter from yourselves.

You say that Tilly was not one of the ones recalled, in that case I would like to see proof that my daughter's batch number wasn't affected by this 'mistake'. I do not wish to put my child through a blood test to prove her immunity. Can you imagine the difficulty in taking blood from a 17 month old ? I cannot imagine it is an easy process at all. I do not wish to put my daughter uneccessarily through all of that. The fact is that we will have to have her measles vaccination re done at another private clinic. We are not going to go down the MMR route, we have already decided against that so why on earth would we now decide to give it to her. We came to the Elstree clinic to have her vaccinated against measles and now that is in question so we will have to spend more money elsewhere to ensure she is vaccinated properly. That is why we are asking for a refund. I think that it is disgusting that you are not prepared to offer one and fully intend to look into taking this matter further.

You mention that these are purely allegations and that you have had no results to 'substantiate' them - there was obviously some serious doubt in the first place for you to recall so many children so how can you say this ? At the end of the day we, like all the other parents who had their children vaccinated at your clinic, came to your clinic in good faith having made a choice to have our children immunised with the single vaccines. For whatever reason there was doubt that some of your vaccines had been totally effective - is this not fact ? As a result of this you are offering blood tests and repeat injections if necessary. I do not want a blood test or to have my child revaccinated at your clinic. I have absolutely lost faith in your clinic and want a refund for the injections not more injections ! You say that you have never received a complaint from a parent of any child becoming ill after receiving your vaccines - that is very lucky. I sincerely hope that continues. It would be terrible if a child was to suffer because of this mess. However that is still not the point. My child may not be immune to a disease which I have paid your clinic to immunise her against. That is a fact and it is simply not satisfactory.

At the end of the day there is very little information forthcoming from Elstree to the parents of affected children and indeed the public, either to defend allegations or simply offer reassurance. Rather than send 'firefighting' letters it would be better to address the situation in a more direct manner and inform parents of the exact information regarding each individual child. This has not been done. The information forthcoming has been very muddled and not consistent.

Sorry ! Here it is....

I would like proof from yourselves that my daughters batch was not affected. I assume the easiest way to do this would be to tell me which batches were affected. I have her batch number and can then check myself. I did ask for this when I visited last Monday but the lady I spoke to was unable to give me such information. However if this has suddenly come to light, please be forthcoming with it.

oOPS - really am having problems today. The
'Sorry here it is' should have come at the top of the message.

ShelleyB have you tried emailing them? [email protected] I've had very swift email responses from them.

Great letter Tillysmummy! I think it is outrageous they didnt send us a 'you are not affected' letter out and won't give a refund either. The not knowing is just horrible.

I have heard that there is a clinic in Hemel Hempstead so we are going to go there for the next two jabs and I am going to see if we can get a mouth swab taken there too to confirm whether the measles vaccine has worked.

Cocococo - I have now emailed them. But the response I got was basically the standard letter that was sent out that we never received in the first place. So I am none the wiser. I will be emailing again requesting a refund. Tillysmummys letter was great and has spurred my anger on to even greater heights !! How dare they !!!!

Do you have details of the hemel clinic. If you could pass it on i'd be grateful. If you can't post it I'll let you have my email address. I have totally lost faith in Elstree and wouldn't go back there if they paid me.

I am about to send them another stinking letter today as they haven't replied. We plan to sue them if they don't refund. DH is a solicitor so we'll start the ball rolling and I'll keep you all informed.

There is a clinic in London that we are going to go too. It's more expensive but seems fairly reputable and I have asked them if they will confirm the origins and preparations of all vaccinations and they have assured they will. If anyone wants the number let me know.

Tillysmummy - I think the only reply you are going to get is the one I have received today following my email demanding a refund. I have copied it below. I intend to contact both organisations named by email immediately. And I would like contact details of London clinic please.

*
Thank you for your email enquiry.

We have been instructed that we must with immediate effect cease all operations at the Elstree Clinic as well as the Sheffield Clinic due to absence of current registration of the National Care Standards Act 2000 Section 11(1). Neither to staff nor Dr Pugh can advise or speak to you as this may be construed as a consultation for which both he and the Company will be prosecuted.

We are not able to consult or advise you any further, this applies to both clinic patients in respect of vaccinations and private patients.

For further information please contact the National Care Standards Commission on 07789 876043 0r 011592 10950 – email [email protected] or Dr Joel Bonnet – Direct or Public Health – Hertsmere PCT on 01707 647586 – email [email protected]

We apologise for any inconvenience caused to all our patients and thank those of you who have shown your trust and support.

Lifeline Care Limited

Typical.

I shall contact the details you've given me for answers - thanks for that ShelleyB. I don't have that response yet to my email but am sure I will receive it.

My dh is a solicitor and we have been talking about the likely result of suing then to recover the costs of the injections (that is all it will be) - I am keen on a matter of principal, he is less keen.

What does everyone else think. If we could all sue together maybe it would be a better option. Then again maybe best to just let it lie and put it down to bad experience and go somewhere else for them.

Does that mean they have all disappeared then? What a horrible situation. These were the last mails I recevied from them. They confirmed that my DS was not being recalled but I just can't be sure that he is protected or not. I am waiting for that clinic in Hemel's number, I will pass it on as soon as my friend is back.

19h February 2003

Thank you for email regarding your son's vaccinations and I fully appreciate your concerns regarding the recent media coverage – which was horrific to say the least – we are all parents ourselves and perfectly understand your concerns.
Your son is not being recalled. There is a saliva test available but only from the Public Health Laboratory and they will not give us either the manufacturers name or the tests.

Firstly, there are no specific dates or ‘alleged contaminated or ineffective vaccines’.
There is no medical evidence to support these allegations and accusations.

The truth is that we legally terminated the employment contracts of two doctors who then filed the ‘allegations and accusations’ against the clinic.

The clinic immediately had an inspection by the Department of Health and an independent Pharmacist of their choice who accompanied them. All our vaccines procedures were thoroughly investigated and the Pharmacist was perfectly satisfied with all our procedures and stated so – this apparently was not the view of the Department of Health, although we have yet to receive any official confirmation on this. The Department of Health also requested that we sent letters to all parents advising them to see their local GP for the MMR. We are not in agreement with this.

Obviously we have had many hundreds of parents attend the Elstree clinic during the last week and over 100 blood tests performed at the parent’s request on children ranging from June to December who attended various clinics both Sheffield and Elstree.

All results to date (over 100) show that children have received an effective and safe vaccine – bearing in mind that no manufacturer will 100% guarantee any vaccine (the maximum being 94%) which means that 6 of every hundred children can receive the same vaccine and not respond – these results prove that the vaccines are both safe and effective other wise we would be receiving results that show children are not immune.

We have absolutely no result to believe and there is no proof to substantiate these ‘allegations’. We have been offering single vaccines for over 5 years and have been a private medical practice for over 17 years. We have never received a complaint from any parent of a child becoming ill after receiving our vaccines – other than normal side effects – and no reported cases of any child contracting the illness against which they have been vaccinated.

We perfectly understand every parents concern regarding the media coverage and quite rightly so. We are satisfied that all children have received a safe and effective vaccine from our clinic and there is no medical evidence to suggest otherwise. This is verified by the results of the blood tests.

Kind regards
Sue Hawkins
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I also have a list of Q&A's updated on the 18th Feb that came via email with the letter above, I won't post them all here unless someone wants me to but here are a few choice ones!!
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Q7) Why should we believe you? We have heard that your clinic has closed down and you and your staff have disappeared.

Our Clinic has been offering single vaccines for over Five years now and we have never received a complaint of a child becoming ill as a result of any of our vaccines – or having contracted any disease vaccinated against.

If we were administrating contaminated or ineffective vaccines – would this be the case and would will still be here?

A) Our clinic has not closed down and we are there answering as many parents concerns as quickly as it possible.

B) We are and will reply to all concerned parents (although we would remind you that if you have not received a letter – your child is not part of the ‘recall’ process)

Q9) Why should I believe any thing your clinic or Dr Pugh has to say?

That decision obviously is up to you – if you prefer to contact your local GP please do so.

I'm up for suing them together - I know of 4 other local mums who used the clinic and might be interested. I wonder how many people we would need and what the outlay would be - the Daily Mail is crawling all over Elstree it seems - maybe they would put part of the money up??

Here's the info for Holborn Medical Services.

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I spoke to Dr Halvorsen in detail and he was very helpful (as he would be he stands to make a nice profit from this ! Sorry can't help being negative now !

He basically said that there is no point putting the child through the stress of the blood test. There is no harm in giving measles again. If they have immunity already their body will dispell the virus immediately and if they don't they will develop it.

Hi Cocococo

I have been copying the Mail in on all my emails but have not had any response. In the first article there was an email address but unfortunately I lost it and can't find it again. So I have been emailing the health editor.

I don't know how many we would need for the suing thing. I'll speak to hubby tonight and get more info on whether or not it's viable.

Here's my correspondence to the contacts ShelleyB gave.

Dear Ms Moon / Mr Bonnet,

I sincerely hope you can help. I am very keen to resolve this situation. My husband and I, like many other families we know, are disgusted, angry and concerned at the treatment we have received from the Lifeline Care clinic at Elstree with regard to our daughter's single Measles, Mumps and Rubella vaccinations.

My husband and I still have numerous questions unanswered and now understand that the clinic has shut down because of absence of current registration of the National Care Standards Act 2000 Section 11(1). I am sincerely hoping that you will be able to answer these questions.

1. We want proof that our daughter's batch hasn't been affected - I asked Elstree for this and they said that it hadn't been but were not forthcoming with any proof. I want to know what batch numbers were affected.
2. I want confirmation that she hasn't been exposed to any 'dangerous bugs and infections' as claimed by the Daily Mail, as a result of this mess up.
3. I want to know who we contact and how we go about seeking a refund to compensate for the fact that we are having to go elsewhere for the injections now and at a higher cost. I was in the process of arguing with Elstree about this when I heard about the clinic being shut down.

I really hope you can help with all of this. I have spoken with many other parents in the same situation and group action is being considered.
Sincerely,

Lucy Mitchell

I'm up for suing them together - I know of 4 other local mums who used the clinic and might be interested. I wonder how many people we would need and what the outlay would be - the Daily Mail is crawling all over Elstree it seems - maybe they would put part of the money up??

sorry hit refresh! Thank for that I'll check it all out and I'll also talk to the other mums I know to see what they think.

I have received a reply from one of the contacts mentioned in Elstrees latest email.
In my email I asked three things 1) how I can find out if my son was one of those who had the suspect jab - this was not answered specifically. 2) I asked what the procedure was regarding refunds -this has been ignored completely and 3) after categorically stating that "I do NOT wish to have my son vaccinated again with the triple jab, this was the reason we went to a private clinic in the first place." I get the reply that "The safest and most effective way to do this is with the MMR vaccine."
Absolutely Bloody Useless.

reply in full below:-

Dear Ms Bennett
Thank you for your e-mail.
The situation surrounding Dr Pugh is that in order for him to practise as a private Dr he must be registered with the National Care Standards Commission this is so we can ensure that a safe service is provided to the public. Dr Pugh was not registered with the NCSC and therefore was stopped from practicing.
It was discovered Dr Pugh was not following the correct procedures recommended by the manufacturer for making up and administering the vaccines. The clinic made up batches of vaccines in advance of some of the clinics and this may have led to some of the vaccines being less effective than the normal(and therefore not offering the child proper protection as well as risking the introduction of bacterial infection from the injection). As far as we know the problems occurred between 3 June and 22 December 2002. If your child has been well since his immunisation it is very unlikely that any problems will now occur directly as a result of the injection.

It is recommended that all children who may have received the vaccine prepared in the non -standard way should be vaccinated again. The safest and most effective way to do this is with the MMR vaccine. You should see you GP about arranging this.

Ericka Moon
National Care Standards Commission
Regional Manager PVH North East
01522 699310