Taking the private route?

[Maggiejigs]

My husband was suffering from paranoia earlier this year which led to him being referred to our local NHS Memory Clinic. Early July he had a brain scan (which shows mild atrophy) and initial testing which was borderline. He is now waiting for further testing but no sign yet of a date. I did ring the clinic last week and they say he is nearing the top of the list and should hear within next two weeks. I am assuming when he does hear from them that the appointment will not be imminent and following those tests we will have to wait yet again for several weeks to meet up with psychiatric doctor to discuss the results.

The waiting is taking such a strain on me that I asked our doctor about going private. He gave me some print-out sheets for Nuffield Health and a place in London. Having been given the runaround by one and no response from the other I have now in a roundabout way found a consultant - £320 an hour!

The reason for my post is to ask whether anyone has taken the private route - especially interested if you live in south east England. I spoke with a private consultant this morning and he said sounds likes my husband is fairly embedded in NHS but once I take the private route they will cease all interest in him - which I totally understand. I am just wondering if I will be cutting off my nose to spite my face?

We have a holiday booked in November hence my urgency for a diagnosis and although my husband is showing no signs of paranoia these past few months I would be worried he would feel it once we stepped on a plane.

Surely once diagnosed by private consultant we can refer back to our doctor for ongoing care/advice if required. After all! we have lessened the NHS queue!

 

[Tin]

I would say not, but just in case I am going to cover myself self and say that maybe in some cases you can be referred back!? the nhs needs their own line to follow. It will be the same with medication, once privately prescribed it cannot be transferred back to nhs - there is a huge notice in our surgery explaining this. Any other non related dementia problems would still be covered by your gp.

I am not sure what you would gain by having a diagnosis immediately, After my mum's scan her next appointment [6 weeks later] was to confirm and discuss diagnosis, but before this, our gp prescribed antidepressants for her, to help deal with some of the obsessions, sleeplessness and of course depression. All done in consultation with her consultant.

 

[Grannie G]

I took my mother for an assessment by a private neurologist. He diagnosed dementia and empathised because his mother also had dementia.

My mother had private health insurance but he advised us to stay with the NHS for her. It was a while ago and the private sector may have more provision now than they did then , I don't know.

 

[Beate]

Medication will only be prescribed if it turns out to be Alzheimer's so you're not really gaining all that that much by going private imho. Plus NHS and private clinics seem to mistrust each other, so if you ever want to go down the NHS route later, you might have to repeat all the tests. And if you don't have a private medical insurance, going private can be prohibitively expensive!

 

[jenniferpa]

We have a holiday booked in November hence my urgency for a diagnosis and although my husband is showing no signs of paranoia these past few months I would be worried he would feel it once we stepped on a plane.

If this is your primary concern, I'm not sure I would bother. Because the reality is: while some medication might help with paranoia, there isn't a sure fire "take this and you won't be paranoid" pill. In other words, with or without a diagnosis, you'll still be potentially dealing with paranoia, and you won't actually know if you'll be dealing with it until it actually happens.

 

[Maggiejigs]

Jenniferpa you have it in a nutshell - thank you for confirming my thoughts re paranoia. My urgency for a diagnosis was that we have to pay the balance of our holiday on 1st Sept. Doctor said as we don’t have a diagnosis there should be no problem with travel insurer but when told him we need to take antimalarials (Malarone) he said one of the side effects can be paranoia and although he is happy to prescribe it he would have to put on record that he warned us. Although we have taken this drug many times in the past with no side effect it doesn’t mean it wouldn’t affect my husband this time.

Will stick with NHS and ring insurance company on Monday, explain situation and take it from there. My husband wants this holiday as much as I do and the irony is that he has had no symptoms of paranoia for past few months but I suppose that’s the nature of the beast! Also we were hoping with a quicker diagnosis that his paranoia might turn out to be caused by something other than early onset dementia.

 

[mab]

Hello @Maggiejigs
We're in SE England, SW London to be precise and have had extremely good care from the NHS, our GP, the memory clinic and the consultant.
Despite the fact we have private medical insurance (great for surgery!), and are retired from the medical world ourselves, there was never a thought or suggestion to seek private care for dementia. I think you'll find that dementia is an all encompassing problem which needs the joined up services of so many health care professionals, input from the LA, SS etc, and for the foreseeable future, that to seek an outside diagnosis would serve only to complicate matters.
To answer your question..... Yes, I do think you'd be cutting off your nose to spite your face.
Go on holiday, enjoy yourselves, and come home refreshed and ready to embark on this long, long journey that is dementia. All the best.

 

[Beate]

I would have thought that any paranoia could be treated independently from any dementia concerns, and if there is any chance that a dementia diagnosis might invalidate your travel insurance, might it not be easier to let sleeping dogs lie until the holiday is over?

 

[Maggiejigs]

Thanks for your responses and wish it was that easy to just go on holiday. Yes, doctor did say until we have a diagnosis all we can tell insurance company at the moment is that my husband is undergoing memory impairment testing. HOWEVER - the holiday is a 3 week safari to Kenya in Nov and when it came to boosting our jabs the nurse referred us to the doctor when I told her my hubby had been suffering from paranoia and having seen the doctor it turns out that one of the side effects of the antimalarial drug we need - Malarone - can be paranoia. We have taken this drug many times in the past with no side effects but whose to say it would be same this time round?

The doctor will prescribe the drugs but will put on record that he has told us about possible side effects - and I totally understand he has to do that to cover himself. Now the insurance company may say they will not cover my husband at all, or will not cover him for the paranoia - will find out tomorrow when I speak to them. We have paid for emergency flying out from safari to Nairobi hospital if emergency occurs during our trip and as it is just us and the guide on the trip we do not have to worry about spoiling anyone’s holiday. But then I wonder if we should tell the safari company about the paranoia? To be honest he has not had any paranoid thoughts for some weeks and I am wondering if I am making a mountain out of a molehill. Worst case scenario is we are airlifted to Nairobi - all I need do is get us a flight home!

Sorry to go on about this on here but it is the only place I feel I can ask questions and get thoughtful answers.

 

[Maggiejigs]

I would have thought that any paranoia could be treated independently from any dementia concerns, and if there is any chance that a dementia diagnosis might invalidate your travel insurance, might it not be easier to let sleeping dogs lie until the holiday is over?

Beate - I believe paranoia is linked to early dementia - think this is why hence doctor sent us down memory clinic route.

 

[Tin]

I understand your dilemma. Is there anything that can be prescribed for possible paranoia? How have you dealt with it in the past?

 

[Beate]

Beate - I believe paranoia is linked to early dementia - think this is why hence doctor sent us down memory clinic route.

I understand that but any dementia medication isn't usually addressing paranoia so that would have to be dealt with separately. Hence, instead of pressing for an earlier dementia diagnosis, and if the paranoia right now is the most pressing problem, try to get that sorted first.

 

[Maggiejigs]

I understand your dilemma. Is there anything that can be prescribed for possible paranoia? How have you dealt with it in the past?

Tin - April was first time my husband showed any signs of paranoia - imagining someone was out to get him - and the doctor referred us to the memory clinic. I spoke to his Consultant at memory clinic recently as they had given us an appointment for a review on 8th Aug when he hadn’t had second lot of tests carried out and she cancelled that appointment and said ‘let’s get these tests done’ then we will deal with your husband’s paranoia? So until the tests are carried out - still waiting for a date - I don’t think anything can be done re paranoia. The doctor was going to give my husband something in early days but I told the receptionist if it was going to turn him into a zombie then I didn’t want him to have it - she said if that was the case she wouldn’t ring me back, and she didn’t.