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TOPIC: NHS Dentistry / Dentistry with MCS

NHS Dentistry / Dentistry with MCS 5 years 5 months ago #1

  • Jodie
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NHS DENTISTRY
(See 2nd post below for MCS specific dentistry)

I have had to be super careful with dentistry materials due to metal allergies + MCS & have had to pay privately for a London specialist until I finally got a DX of mast cell activation disorder. Following that (& having spent £15,000 on teeth) I decided it was time the NHS started to pick up.

I’ve discovered NHS dentistry to be pretty murky waters, and as its something which most ppl don’t deal with more than a quick check once a year (when you can’t wait to get out again), everything stays pretty murky - plus its very hard to know if what you’re being told is BS or not, or whether your treatment has been good.

So I thought I’d let everyone know at least what I’ve learnt:

Basics:
NHS Dental Charges are laid out here:
www.nhs.uk/NHSEngland/AboutNHSservices/d...-dental-charges.aspx

and in more detail under “List of dental treatments by Band” on the same page.

I've attached a file giving a more advanced list I’ve acquired from NHS England, which may be useful.


Also, contrary to what many patients are led to believe, the principle of NHS dentistry is that THERE IS NO LIMIT ON THE TYPES OF MATERIALS WHICH CAN BE USED – the same range of materials is available to NHS dentists as to private dentists, and can be used if clinically necessary.
I have had this confirmed twice now by the Department of Health. So don’t be fooled into paying privately to eg avoid materials which may contain substances you are allergic to, (for instance nickel allergy is very common & varied percentages of nickel are allowed in ALL metal dentistry -up to 0.1% of nickel /miscellaneous metals can be added but not officially counted as part of the content). If you have a nickel allergy, or other metal allergy, you can expect to be treated with alternative materials. You may be asked to get a patch test or similar, or your dentist may simply go on the fact that you react badly to belt buckles/other common metal objects.

As another example, don’t put up with dentures which are painful when a different type would fit better.

In my experience even NHS dentists are often not aware of this. Possibly since most of them are mixed practices they’ve got so used to charging privately for anything which isn’t absolutely basic that they’ve forgotten what their NHS contract says.



Some of this is stated on the NHS Dentistry website, eg:

"White fillings are available on the NHS where clinically appropriate."

www.nhs.uk/Livewell/dentalhealth/Pages/Dentaltreatments.aspx

This is a quote from the Dept of Health:

“You would not be expected to accept treatment that would be detrimental to your health and if this is documented, there would be no reason for your dentist to insist you accept them.

NHS dental services can meet all clinical needs. There are no restrictions on the use of materials.”

However before requesting a different material first make sure your dentist has experience with that material, either within NHS or privately, or they are likely to say NO "because they have not used it before" (even for simple procedures like fillings). This has become apparent to me as a way of avoiding using more expensive materials in NHS dentistry. However if you know that dentist has experience with that material, for instance with their private patients, and it is clinically necessary for you to have that material, as an NHS patient you cannot be denied that treatment.


Requests for Info & Complaints.

If you are confused as to how to deal your dental practice and how to proceed you can email This email address is being protected from spambots. You need JavaScript enabled to view it. - I’ve found they reply quickly.

Here’s the NHS page for complaints –email communications at least give you a record of what’s been said but there are phone no’s etc too

www.nhs.uk/choiceintheNHS/Rightsandpledg...s/NHScomplaints.aspx

Also really useful and quick to respond are the Dept of Health – I had to contact them occasionally as neither NHS England or the PCT (local funding authority) had the correct info. There is a web contact form here:

www.gov.uk/government/organisations/depa...complaints-procedure

But note:

“We can only handle complaints about the work, staff and levels of service provided by the Department of Health (DH).”

You can give info about good & bad dentists to the Care Quality Commission - go to this page:

www.cqc.org.uk/content/dentists , do a search for that dentist, there should be a link "share your experiences" - that info goes to their inspectors. There's more info there on making a more formal complaint to other bodies too.

This flowchart is also really useful www.citizensadvice.org.uk/healthcare/nhs...s-process-flowchart/

Choosing the right dentist in the first place.
This can save a lot of trouble down the line.

Look at reviews for your possible dentist on the NHS dentistry site. www.nhs.uk/NHSEngland/AboutNHSservices/d...-an-NHS-dentist.aspx.
Although these seem to be completely wiped out periodically - maybe every year Im not sure. If you want your own review to hang around you might want to put it elsewhere, eg Yell.com

If your local area has signed up to Streetlife, www.streetlife.com
you can get the current opinions of neighbours for miles around.

Don’t commit to a practice until you’ve met the dentist you’ll be dealing with & you have a feeling for that individual & the practice. As long as you do not have an urgent need for one you can scout around.

Make a list of what you expect from them & go in for a one-off first, a quick check for a 'problem’ tooth/ a question about the kind of treatments they provide..something like that, and ask questions.

I had to leave one practice because one of the dentists was terrible , but others that I saw occasionally in same practice seemed fine. However you generally can't change dentist within a practice - you are usually stuck if you've landed a bad one. I've talked to NHS Direct about this and they said dentists run a practice as a private enterprise effectively doing as they like with it, But GPs run their surgeries under the same quasi-private contract (and you can change GP easily) so that really is not an answer.

Seeing an NHS dentist at more than one practise even mid-treatment. Yes you can.

With regard to seeing more than one NHS dentist at the same time, (which I had to at one point as had to wait a month for appts with the guy I’d signed up with - something I should have asked about before I signed up)

"It is entirely up to you as to which Dentist you choose to see. However, you may find it problematic if you start one course of treatment at one practice and then continue with it at another practice, it is possible you could be charged twice. Also, to consider is that it's possible that the dentist(s) would not wish to cover each other’s treatments. If you had to go to the other dentist for emergency treatment then there isn’t a problem.“
FYI I changed mid-treatment, had no probs and ended up staying with the new dentist .

++++
Some dentists are into something called ‘gaming’ - google it. It’s where they take advantage of the NHS payment system to suit themselves not their patients.

Therefore if you feel you are in any doubt about your treatment, go get a 2nd opinion – you are entitled to do this tho you’ll have to pay for it, standard NHS rates. Also check your ‘2nd opinion’ dentist has room for a new patient should you decide to go with his point of view. The original dentist will probably stand by his decision whether you like it or not, so there may be no point in going back to him with no.2 dentist’s advice.

And finally….

It is now unofficial policy that if you need root canal treatment for very back teeth (the ones in from wisdom teeth) this is usually referred to a specialist - and when you get there they will in fact extract them instead.

I’ve had one London teaching hospital specialist and 2 high street dentists confirm this. This is general knowledge at NHS specialist level & local dentists are discovering this not because they’ve been told but because patients are coming back to them with teeth removed instead of root canalled as requested. This is due to lack of funds/time & they say you don’t actually need those teeth. The NHS Dentistry principle has always been to save teeth, but not in this case apparently.

You can put in an appeal to your local PCT (Primary Care Trust)- you do not need your dentist to do this, you can do it yourself. Dentists hate putting in requests to PCTs due to all the paperwork, you will probably make a better job of it yourself, I did and was successful. It can take a while to get to someone but can be speeded up if you are in pain.


NOTE : my own journey has now gone from NHS dentists doing their best to dodge treating me, & on complaining about this being sent by my Primary Care Trust to an Eastman Institute Dental Hospital specialist (waste of time - more interested in protecting the dentists than helping me) then back to the PCT * insert several GP visits for referrals/paperwork* & lately to a local "special needs" dentist. First appt there I was told "We dont have the equipment to treat you here/ haven't got the budget/dont know why they've sent you here/ you'll get much better treatment privately" . This process of making any treatment as difficult as possible was what I'd got used to by now, but you have to be prepared to take this all the way to the DOH & your MP if necy..and at this point we'd come to the end of the line, they could not avoid the issue by sending me anywhere else. I refused to go private & was told I would have to speak to the Area Manager, which I did and she could not have been more helpful. So now I am with Sp Needs dentistry and they must test composites fixed in tiny amounts to a tooth for several weeks before using properly in fillings & use only Emax crowns b/c that is all i can tolerate. Result! Finally!

I hope all this helps a few folks wade thru the quagmire :)

My dentist looks scared every time I go back there now ..

File Attachment:

File Name: COMPREHENSIVEGuidetoNHSbands.pdf
File Size: 197 KB
Last Edit: 3 years 11 months ago by Jodie.
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NHS Dentistry / Dentistry with MCS 5 years 5 months ago #2

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GENERAL DENTISTRY WITH MCS:

There don't appear to be any reliable tests on dentistry materials apart from MELISA allergy tests which are pretty much just for metals - tho I've recently discovered patch tests for other dentistry materials at St John's Institute of Dermatology www.guysandstthomas.nhs.uk/our-services/...ology/referrals.aspx . How useful these would be for MCS patients I don't know - they're generally used for delayed reactions which cause eczema type flare ups anywhere on your bod AFAIK, but these tests might be worth exploring further.

I've found the only reasonably reliable way of testing is to keep a small amount of the material in your mouth - dentists or technicians are usually happy to supply these , its not the materials which are expensive its the work which goes into getting the stuff into the right place in your mouth which costs. Best advice I've found online is to keep in your mouth for 2 hours a day for 2 weeks. This might be correct - I had a composite filling put in recently which I didn't start to react badly to for 2 weeks & then caused burning searing pain on my tongue, throat and even up my nose. It came out and was replaced with some sort of calcium based filling - the pain stopped immediately!

You may be able to buy some materials online - I've just checked on Amazon and you can buy the little blue light used for hardening composite fillings for about £25, maybe you could acquire some of the composite too if your dentist is being difficult about letting you have some, but frankly the dentist should help out, it's in both your interests to get it right.

There are such things as ceramic fillings & glass ionomer fillings - be aware that glass ionomers usually release a lot of flouride over many years, but especially to start with - I reacted really badly to them.. large amounts of flouride are known to cause nausea & stomach pain in sensitive people - that + burning mouth is what I experienced.

EMAX crowns are pretty safe - except there are about 30 different versions & even the dentists don't really understand the difference between them. Neither do they know what's in the material they use for fillings most of the time - it's all a bit of a mess tbh. My current lovely dentist pulled out the tube of composite which caused me so much trouble & all it had on it was "No.1" - he had no idea what was in it.!
CEREC crowns appear to be more of a prob for those with allergies /sensitivities, they appear to be high in aluminium - I've had bad reaction to one and have come across many others who have too. My current dentist says his EMAX crowns have an outer layer of porcelain which CEREC does not have, so it's possible that's the difference.

Holistic dentists generally know more about materials and will use safer ones. "Admira" composite is one used by a holistic dentist I crossed paths with 10 years ago, they are still using it as of 2015, so this might be a safer bet than most.

Anaesthetics Many with MCS seem to do well with Citanest without adrenaline, I used this for a long time. I also did not have a problem with Mepivicaine. One individual who had problems with all dentistry anaesthetics successfully used Benadryl instead:-

groups.yahoo.com/neo/groups/GreenCanary/...tions/messages/34297

"In case this is of interest to any of you who react to lidocaine or other commonly used local anesthetics.
I just had a dental extraction using a mixture of preservative free benadryl and saline instead of local anesthetic which has been described in the literature. I premedicated with antihistamines as well but lowered my 1hr pre Benadryl dose as I would be receiving it subcutaneously.
This was the least reactive I've ever been for an intervention and it was wonderful. I did not premedicate with steroids as for me, they were causing preop mast cell flares, but obviously all of this would need to be vetted by your own doc just sharing in case it helps.
Unfortunately, unrelated to the anesthetic, the dentist broke the tooth and left half and now I have an infection and am in a whole new world of problems, but feel a little safer knowing I have a new safe option for local anesthesia.
The last time I received lidocaine with premedication I had a scary reaction.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2923931/

www.drmalamed.com/downloads/files/benadryl_la.pdf "


========

Antibiotics
If you can't tolerate antibiotics at all (I can't) and are worried dentists won't remove a painful tooth without a course of antibiotics due to the anaesthetic not working, you'll be interested in this :
“It’s very very rare for a tooth to be so acutely infected that local won’t work properly, usually you can get around it by either putting more local in or else using a block injection to freeze the entire quarter of the mouth rather than just around the tooth.” (Gordon Laurie, BDS)" www.dentalfearcentral.org/fears/not-numb/#hottooth

I have had local dentists run a mile from extracting a slightly inflamed tooth when I say I can't take antibiotics. A specialist removed it & said it was a cinch! - & apparently most dentists are simply lazy and have got used to doling out antibiotics without thinking. Government policy re the misuse of antibiotics is trying to cut out this casual approach , but in any case don't be bullied into taking them if you can't tolerate them, ask for the anaesthetic as above.

For those in the UK - NHS Guidelines:
Antibiotics are usually only required if:
there are signs of severe infection
there are signs the infection is spreading, such as swelling of your face or neck
you have a high risk of complications – for example, people with a weakened immune system or diabetes
www.nhs.uk/Conditions/Dental-abscess/Pages/Treatment.aspx
========
Avoid implants, or if you really really want to try them go for mini implants (OK for front teeth & for holding in dentures) as these are less traumatic to remove if you start to react badly to them. Make your dentist promise to remove them if YOU say you need them taken out - many dentists will not do this. Ceramic implants are a possibility but are still a risk, are 1/3 more expensive & having consulted with a specialist seems they are even more difficult to remove than titanium should they need to come out. One specialist also told me they crack too easily (tho he was testing early versions).

I had a mini titanium tester implant in for a year with no probs before we put a proper titanium implant in. I checked with the mfr first , got all the safety sheets etc, to ensure it was not contaminated with other metals. Then 6 weeks after the main implant went in I had itching, burning, mouth nose, throat even down to chest. It was awful. We changed the abutment to zirconium in case the titanium on that had somehow become contaminated, but it carried on getting worse.. the whole thing had to come out, cost a fortune & I lost quite a lot of bone in the process. It's not worth having something permanently embedded like that when you have MCS - it causes big problems if you need to get it removed. More worryingly the same would hold for such things as hip/knee replacements. I can only assume that the main implant was contaminated with metals that I'm allergic to, and as we know even tiny amounts of something our bod doesn't like can be enough to cause adverse reactions.

People are suffering quite badly with titanium implants (not just dental).. have a look here www.medhelp.org/posts/Allergy/titanium-v...252386#post_11025344
Last Edit: 4 years 5 months ago by Jodie.
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NHS Dentistry / Dentistry with MCS 5 years 5 months ago #3

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There is a lot of interest in NHS dentistry in the media at the moment
a few links www.telegraph.co.uk/finance/personalfina...y-their-dentist.html

www.telegraph.co.uk/finance/personalfina...w-to-fight-back.html

www.telegraph.co.uk/finance/personalfina...ntal-care-costs.html

www.webmd.boots.com/oral-health/news/201...ar-on-charges?page=2

There are more, you can look them up.

"Which" magazine is currently running a campaign - they are asking the public to sign a petition to make clear exactly what NHS treatment involves - please sign up ! www.which.co.uk/campaigns/dental-treatme...campaign=HRG-content
Last Edit: 4 years 8 months ago by Jodie.
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NHS Dentistry / Dentistry with MCS 4 years 10 months ago #4

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I've just started a Facebook page for those using NHS dentistry

www.facebook.com/groups/756158187828150/

If it turns out to be too much of a pain in the butt I'll take it down, but I'm pretty angry at the way myself and others have been treated ~ I want others to find this info & the best way to do that is prolly a FB page.
Last Edit: 4 years 4 months ago by Jodie.
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