As an ITP sufferer which of the follo... - ITP Support Assoc...

ITP Support Association

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As an ITP sufferer which of the following statements BEST reflects your opinion of your dentist(s) ?

AnthonyHeard profile imageAnthonyHeardAdministratorITP Support Association29 Voters

Please select one:

6 Replies
AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

I have had feedback from many ITP sufferers indicating that the general awareness & knowledge of ITP in the dental profession is basically not very good.

This is one of the areas which the ITP Support Association is seeking to address by establishing ITP Centres of Excellence across the whole UK, where advice on dental treatment will be one of the functions of the Centres.

The ITP Centres of Excellence are to be a main focus of attention for the ITP Support Association in 2012 (please see the website for full details of progress so far).

I am very lucky to have a dentist who is keen to learn about rare/ unusual conditions which patients present to him. He has taken a great interest in learning about ITP and is now up to speed with what ITP is and what the implications are for how he treats patients. Many other ITP sufferers however do not share this positive experience, so please let me know your thoughts/feedback and experiences good, bad or ugly !!!!

A very useful leaflet is available from the ITP Support Association entitled.......

Protocol for Dentists - Treating Patients with ITP . This may be given to your dentist and will hopefully help. (see the website itpsupport.org.uk and look under Publications).

The sad truth remains in my view that dentists, GP`s & many health professionals including Physiotherapists, Personal trainers, Gym instructors, teachers, school nurses, chiropracters etc simply do not know much if anything about ITP.

Spreading awareness, education and recognition of the key symptoms continue to be so important.

As we go into this Olympic year with the Olympic ambition of setting up ITP Centres of Excellence, this will hopefully go a long way to addressing some of these issues.

kitlea profile image
kitlea

I am very interested in any feedback to this poll as i have been a dental nurse for almost 20 years. I had no knowledge of ITP until my son was diagnosed and I don't believe i have ever come across a patient that has reported it in their medical history. The dentist i work with had no previous experience with ITP either, needless to say he's fully informed now. He would also do his best to become aware of any treatment implications of any unusual disorder he comes across.

I think it would be unfair to expect all the professionals you mentioned to know about all the unusual diseases and conditions there are in world. However when presented with a patient/client/pupil that suffers from any they should do their best to make sure they so their research so they know of any treatment implications. I would be very disappointed in a dentist that fitted into some of your poll categories.

There are several dental journals around, have you perhaps thought of contacting one and suggesting an article on ITP, or perhaps writing one from a patient perspective. I for one would love to see the awareness of ITP raised in the dental profession.

AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

Thank you for your really helpful comments Kitlea. Like you I have been really

grateful to have received a very positive response from my dentist and he has been very keen to learn about ITP and how it impacts on what he can do with any patient presenting with it. I suppose like everything in life you can experience good or bad service with any provider.

I also agree that it is very difficult to expect all health professionals to know about quite rare conditions like ITP and really I suppose the main point I was making is that it is very much a question of trying to raise awareness as much as possible.

In looking to develop the idea of Centres of Excellence the ITP Support Association is hoping that across the UK we can have designated hospitals which would provide full support to ITP sufferers in terms not just of diagnosis & treatment for their ITP but for research, support, information, and things like advice on dental treatment, and general health issues which are impacted by their ITP.

In February I am hoping to attend the RareDisease UK annual conference where I hope to use the forum to raise ITP awareness and also pick up on what hints and tips they have for raising awareness in other circles. I will also look up the dental journals and ask them if I could submit an item about ITP, albeit I will check with ITP Support Association HQ before I do that as they may well have already done so.

There is actually a very good article in the December issue of the ITP Support Association, Platelet magazine which highlights some of the issues that ITP sufferers have had with dental treatment but as you say Kitlea it will be interesting to see what other feedback we get from this poll.

Morgan profile image
Morgan

My dentist (Bournemouth area) is aware of ITP and when an extraction is required I am referred to the local hospital, otherwise I have no problems.

AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

Thank you for your feedback Morgan. Pleased to know that you are getting well looked after by your dentist.

None of the options of the poll fit my situation. I've seen two different denstists while I've had ITP and both seemed to understand what it was when I explained that it means low platelets but neither of them seemed to care. They just carried on as normal and never asked me what my count was before doing any procedure.

I once had a cleaning with a hygeinist and I said that I had a bleeding disorder with a low platelet count and she simply replied "oh you won't bleed much with this" and was then surprised when I did. I knew I'd be okay but the total lack of concern from any of them is worrying.