BUPA Doctors

[Barcode]

Anybody found them to be o.k?

There is a gene in my family which prediposes us to cancer (two of my brothers have had tumours removed from their adrenal gland, another two carry the gene but it hasn't expressed itself at the moment, the rest we are uncertain as testing needs to be done), and my doctor does not understand the need for testing.

I went to see him today, and he said, 'well, you're asymptomatic now and don't have a tumour secreting hormones, so you don't need to do anything.'

I thought that was VERY dismissive, as the gene causes malignancy in around 30% of cases, hence the need to go for an annual MRI. Even in benign cases, you need it as it is obviously much easier to treat when it is small and hasn't caused too many symptoms.

Since my doctor is not listening to me, my partner is calling up BUPA tomorrow to get an appointment in Leeds. My reasoning is that since I'm paying for it, they will have to listen and get me the tests that I need.

Meanwhile, I'm going to change NHS doctors as mine is obviously clueless. The more urgent thing is to get the tests sorted out. Just wondering if anybody has had good experiences with BUPA doctors? My NHS doc said even if I did have tests he couldn't sort it out for around three-four months! The point of paying is to bypass all this and get it sorted quickly (I hope).

[justtoclarify]

BUPA consultants are often NHS consultants in nicier surroundings on their "off" days. I've known several people use BUPA consultant and investigative services without any problem.

It will very much depend what type of BUPA policy you have as which route you take to be referred for the MRI. The cheapest way to access investigative services (scans, outpatient tests etc) is to be referred by your GP. If you have to get a private GP using BUPA to refer you this will probably reduce the amount available to you for out patient treatment, but again this depends on what type of policy you have. It might just be worth telling your current GP that you have BUPA cover and that to put your mind at rest given your family history that you would like to have scans done privately and would he refer you under these conditions. Given that MRI scan is likely to expensive when done privately and BUPA out patient services usually have an annual limit on them, it make sense to get the maximum amount of investigative services out of your policy, by minimising the referal fees.

You can find out which consultants are specialists in the type of cancer you are concerned about from the bupa web site and which hospitals they are available at:

http://www.bupahospitals.co.uk/asp/searches/consultant/consultantsearchcriteria.asp

You could try cross checking this with the GMC register of doctors and their specialities.

http://www.gmc-uk.org/register/index.asp

If you are able to persuad your current GP or the new one how concerned you are about this, they may know who the local area specialists are and which practice privately.

Hope this helps.

[Ted_Hutchinson]

Phaeochromocytoma (http://www.patient.co.uk/showdoc/40001342/) sounds like what you think is in your family genes.
There is more information about it here Pheochromocytoma Mayo Clinic (http://www.mayoclinic.com/health/pheochromocytoma/DS00569/DSECTION=5)

If you read this then you may conclude that the first thing need a check for is hypertension (http://www.patient.co.uk/showdoc/40000567) You can do this yourself with a £9.99 Lloyds Fully Automatic Blood Presssure Monitor (http://www.lloydspharmacy.co.uk/home-page/whats-new/lloydspharmacy_fully_automatic_blood_pressure_moni tor.htm)
I think you are wise to consider changing your current doctor as clearly you have a family history and it doesn't seem unreasonable to request the Blood and urine tests however an alternative would be to just ask for a second opinion before paying for a BUPA screening.

[Barcode]

Hi Ted,

It is pheo. Two of my brothers have had pheo's removed. We know they are caused by a mutation in the SDHB gene.

I have been asymptomatic, no high blood pressure (it's slightly low), my tests came back normal, but because of the gene, it is recommeded we all have annual scans to pick up anything before it starts as there is around an 80% chance of the gene expressing itself before the age of 50.

The problem is that my doctor thinks nothing more needs to be done as 'the gene is not expressing itself now.'

I don't have a policy with BUPA, on the website it says you can call up and arrange an appointment, then it's £55 per 15 minutes. It also says they do private referrals, which is what I need, to an endocrine specialist or a cancer genetics specialist who can get the screening arranged in a more timely fashion than my GP.

[justtoclarify]

Once you have a referral for the scan, be it from a GP or consultant you can contact BUPA directly to arrange it. The results of scans are normally sent to the referring doctor.

As you say that you don't have a policy with BUPA, consider contacting your local specialist NHS hospitals as some will have private services available for a fixed fee for self funding patients. Besides BUPA, there are also a number of other private providers the Nuffield Hospital being one. The Nuffield Hospital website has similar information to BUPA so you can look by treatment/services and it will tell you which of their hospitals it is available at and what is required to arrange a test.

http://www.nuffieldhospitals.org.uk/

[nearlyrich]

I think you need a GP referral even if you are going privately for tests, as another poster says the private docs also work in the NHS so a good GP should be able to suggest the best person for your problem. I understand your concern it's better to be sure and have unnecessary tests that be too late because you didn't bother, GPs are not always right.

[Ted_Hutchinson]

I still think your first cheapest option is to politely ask your GP if you could have a second opinion from another doctor. That way you are telling him respectfully that you are not convinced there isn't a need for an annual scan.

I would however take account of the fact that some informed people who have considered the results of the breast cancer screening programmes think the dangers of overtreatment and unnecessary treatment is so great that it is marginal as to whether it is worthwhile.

Now I have no idea whether the same situation applies with your risk of developing pheo. But as you have no symptoms, no high blood pressure, and a GP who is convinced the gene isn't active at the moment I don't think you need to panic. It shouldn't take long to arrange a second opinion and this may produce a scan on the NHS in a reasonable time.

[LondonDiva]

My NHS doc said even if I did have tests he couldn't sort it out for around three-four months!

The GP is correct re timescales. When a referral is made, it's either urgent (possibly about to die/we're worried that this person has a cancer that needs seeing to right now) or routine, take your turn in an orderly fashion.

As your GP doesn't see any immediate reason to be concerned, you would go in the routine queue. To make an urgent referral with no immediate causes of concerns just means people who do have worrying symptoms don't get prioritised.


Hope you get some peace of mind soon.

[Barcode]

I understand that, but part of the problem is my GP has absolutely no clue about this kind of mutation and how serious it can get. As the illness is so rare, I need to be dealing with somebody who understands that annual testing is essential.

It cannot simply consist of a blood/urine test as (a) tumours can develop before one has symptoms, by the time symptoms appear it can be too late in a significant number of cases and (b) the tests are not very specific, some tumours are non-functioning or secrete different chemicals such as dopamine, which may not be picked up and (c) the tests depend on the tumour actually secreting during the 24 hour period, hence the lack of specificity.

For my GP to be absolutely adamant that I don't have nothing now and don't need any more tests is plain ignorance. There is a 10% rule in pheo's, 10% are malign, but in the case of SDHB, that figure is significantly higher. It's obvious my GP has no clue about the condition and I need to find one who does as I know what needs to be done.

I am not panicking right now, but I am concerned that my GP does not see much of a need for testing. I have an e-mail from my brothers doctor, who specialises in cancer genetics saying that it is essential when it is due to genetics. Needless to say, I no longer trust my GP.

He also didn't KNOW what the Yorkshire Genetics Service was. In his words, 'I'm going to have to research that' , well they are a department in Leeds hospital that deal with familial cancer syndromes. The fact he didn't see the need for testing was bad enough, but to not even know WHERE to refer me was even worse. Surely, he would have had to refer others at some point for other things.

This sort of ignorance can have life-threatening consequences if people just trust the doctor, because apparently they have superior knowledge. It's becoming obvious that I know more about this particular condition and how to treat it than my own GP.

[Ted_Hutchinson]

I have an e-mail from my brothers doctor, who specialises in cancer genetics saying that it is essential when it is due to genetics. Needless to say, I no longer trust my GP. That being the case a change of GP will be necessary.

Can I change my doctor (http://www.nhs.uk/england/doctors/changedoctor.cmsx)