NHS Dental Treatment for Congenital Hypodontia

monkeyspanner

My daughter has Congenital hypodontia. This means that she has a substantial number of missing adult teeth (over half the normal number of adult number). She is over 18 and currently has a mixture of adult and baby teeth. Her baby teeth have begun to fail after probably twice their normal life expectancy. She has had to wait until now to begin restorative treatment because she had to finish growing.

She is under the care of an NHS dental hospital who have begun NHS restoratve treatment but we feel they are either unwilling or unable to offer the best treatment option (i.e. implants in restricted spaces). We have been warned by our own dentist that if we opt for private dental treatment on the specific tooth positions that the dental hospital will not restore with implants we may risk her ongoing free NHS treatment for the balance of her teeth. This ongoing treatment is likely to continue well into her adult life dependant on how long the balance of her baby teeth last. We have been told this could be into her 40's.

This is a long shot but does anyone know if we could treat each tooth position as a separate issue particularly if private treatment can offer better solutions. You may recall that some patients with cancer have in the past been told if they opted to pay for specialist drugs the NHS would not provide any further care and they would have to go private for all treatment. Failing that does anyone know of a specialist medical solicitor who could advise us on this issue.

brook2jack

There are several difficult issues here.

Baby teeth have much smaller roots than adult teeth. In key places such as the canines (eye teeth) this means there is little space or bone to hold an implant. There are "mini" implant systems but the use of these can be controversial particularly in high load areas such as the canines. Even so in many cases of hypodontia there is too little bone to hold an implant in.

Secondly it is dental suicide to have lots of different people planning lots of different highly complex dental treatment in different parts of the mouth. Treatment planning needs to be done as a whole with a vision for the whole even though that may be decades away. Eg planning implant placement not only for teeth lost now but possibly for teeth lost later, or considering an implant may not be best replacing a single tooth but as a support for many teeth. Two different dentists will have two different "visions" for where treatment should go.

By all means ask for a referral to another dental hospital out of Wales for a second opinion (as you are entitled) but it is folly in my opinion getting lots of different people to piecemeal treat your daughters problems. You need one person to overall supervise treatment and if something is not available on the NHS they should be able to advise on the best alternatives.

The other thing to bear in mind is technologies change and your daughter is young. Implants do not last forever and if there placement is suboptimal ie there is not sufficient space for a conventional implant, it may be better to plan alternatives for now rather than going for a less than perfect compromise.

I would , in this sort of case, stick with a hospital rather than going private because the hospital system will have a far greater experience of longterm treatment of these patients.

monkeyspanner

Thanks for your rapid reply.
Your answer has provided more information than we have had from the hospital. Regarding implants we have been told that two spaces being less than 6mm it is not possible to fit an implant although we have been told there is enough bone in one of these spaces. There has been no discussion of the pros and cons of mini implants although we have done some of our own reseach and appreciate that there is some doubt of their suitability in high load applications. Not being specialists we cannot assume what size of implant could be fitted in the larger of the two spaces which is marginally less than required. Any discussion we do manage with the restorative specialist is done "on the run" as he is leaving for his next appointment. I do appreciate you taking the time to give us some information.

Our key concern is:
- Each time we visit the hospital we get a different explanation of what is possible and there is no evidence of a long term treatment plan. Just an immediate short term course of treatment. This has changed substantially between the last two visits.

Essentially what confidence we had the the NHS to provide solutions has been damaged by lack of communication, inaction and a confused approach. We appreciate that technologies change but have been hearing this for over a decade and in the meantime our daughter social development has been badly affected. I would hesitate to ask about alternative treatments because of the reaction we have had in the past when asked questions. What seems to be required of us as parents is to go along with what the NHS is prepared to tell us and not ask difficult questions. Our only alternative at present seems to be to seek a second opinion at our cost in order to gain an appreciation of what is possible to improve the functionality and appearance of my daugthers teeth.

welshdent

I know some of the people that work on the clinic for such patients and believe me they wont be un willing to treat in the best way. Hypododontia is one of the areas that do have access to implants. There are lots of ways to manage the cases and not all are amenable to implants.

monkeyspanner

welshdent wrote: »

I know some of the people that work on the clinic for such patients and believe me they wont be un willing to treat in the best way. Hypododontia is one of the areas that do have access to implants. There are lots of ways to manage the cases and not all are amenable to implants.

When someone starts off a reply with "I know some of the people..." I know that I have hit a nerve. In addition by using the phrase "believe me" you reinforce what I was saying about the expectation of medical professionals that we should just go along with what we are being offered without proper explanation of the decisions being made on our daughters behalf.

I am not saying they are unwilling. I am saying that the NHS approach leads to an organisational shambles and that time pressures mean that there is a lack of communication with patients regarding treatment plans and options. If it is not possible or advisable to use implants at least have a discussion about the options, risks and benefits of each of the alternatives. I thought informed choice was a cornerstone of medical ethics.

brook2jack

The problem is treatment of hypodontia evolves as patient grows older. It will involve a implantologist, an orthodontist, a restorative dentist to plan the braces, bridges and implants that may be necessary. All of these people have to agree on a plan of action and timing in terms of age of patient and prognosis of baby teeth. Once treatment starts in earnest you are looking at years of monthly appointments. I understand you want your daughters work to start soon but it is important not to rush into treatment on a young person like mini implants that may cause permanent damage to bone or other teeth. Dont confuse administrative problems with clinical care. If you are seeking a private opinion you need orthodontic,restorative and implant input. As teeth may need moving before implants. I would guess that he you could find someone willing to treat outside hospital you are looking at 20,000 to 30000 cost of care. But most would probably tell you to stick with hospital. Dentistry is not an exact science and treatment plans change and evolve . I wouldnt read anything into a constantly changing plan in a complex case.

brook2jack

The other thing I meant to say is baby teeth can last into your 50s and your own natural tooth is better and will last longer than any replacement. So often a dentist will be keen to keep back baby teeth as long as possible. Canines too can last many years and look ok. Toe difficulty comes when incisors are missing because then looks are affected. So a balance has to be struck between looks and taking out teeth that may function for years. Therefore a patient may have stop gap treatment for some time until the time has come when the risks of starting major work is balanced. This leads to understandable frustration as nothing seems to be happening. But work done now will have effects good and bad for the next 50 or more years and launching into ill advised work now to get a short term 10 year benefit could cause permanent unsolvable problems if implants or bridges fail.

brook2jack

Very short last point. Most hyperdontia patients because of above considerations dont begin major work until mid twenties. Often because bone grafting etc is necessary. Most will have temporary bridges or dentures to tide them over a long transitional stage that often involves a couple of years of brace work.

welshdent

You haven't hit a nerve I just know the mentality of the people there. They are very good dentists that just want to plan the most effective and stable outcome for your daughter. I dont work there and have never placed an implant in my life. No vested interest on my part "believe me"

welshdent

I do agree about informed consent etc but wadr they are experienced guys and gals that literally spend hours trying to finalise the best plans giving due respect to un predictable variables such as growth and tolerance - often they have no idea how much the admin staff mess people around too! First they know of it is when someone turns up and complains to them on clinic. Don't get me
Wrong, some of the clinics and staff can be a nightmare to get treatment on but hypodontia is one of the better managed ones calling in many disciplines

Appols for any spelling mistakes I'm using my phone!

Billieblob

monkeyspanner, have you tried addressing your concerns to the hospital in writing? Reading your posts it seems to me that you understand the complexity of your daughter's case, but you are getting frustrated at the level of communication from the clinicians and the administration from the hospital in general. So far I agree with the other dentists, the hospital clinicians aren't doing anything 'wrong' except not keeping you fully 'in the loop'. May I suggest a well worded letter to the Restorative Consultant including all your abovementioned concerns? If you have already done so to no avail, then the PALS department should help.