Hi
Has anyone used private health insurance, or paid to see someone privately, when investigating the possibility of PD? If so, how well did it work for you?
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Hi Ant
Yes we did in the very beginning and whilst the neurologist was great we have found that the NHS neuros are just as good in fact our neurologist is amazing- better than both the private neurologists we paid through the nose for and she is NHS.
My husband was dx at 41 so we have had 3 neuros in total.
Its personal preference to be honest and Id say the only difference will be you wait time in being seen. The quality of care I have found is the same in fact personally Ive found the NHS to be better and the process is the same whether you go private or NHS.
I hope this helps
Best Wishes
Beth
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Thank you Beth.
My own experience of NHS care has been poor, after we moved to Cambridgeshire from London. But I haven’t experienced Neurology, and I appreciate that Parkinson’s care could be different. I’ve also found that I get a better response if I have my husband with me at appointments, so have often suspected that men have more credibility in the NHS system.
I’m also concerned that NHS regional care may vary. Quite honestly, I’m scared to think of my husband going through the terrible experiences I’ve had trying to navigate through the NHS system for myself and for both of my parents, who were in Kent. That’s been my main concern.
If we go via the private route for diagnosis (assuming there are better wait times) we can’t stay in it for continuing care, so will need to transition to the NHS anyway. Maybe we should start down the NHS route and if the wait times are long, investigate private diagnosis. In which case we have a choice of areas and neurologists, and we’ll have to make decisions on that! Who’s best, across the UK, etc etc etc.
We’ve only been come up with our suspicions of PD in the last week, but my husband has a long history of neurodegenerative conditions and we could, I suppose, go back to his respiratory/neuro consultant first to see what he suggests.
Basically, we’re all up in the air at the moment.
Hiya,
Yeah I completely understand where you are coming from. I think if you have suspicions then your first port of call is your GP. They will refer you This process will be the same whether you are private or NHS its just going to be the wait times that may differ.
I think Id probably wait and see what the outcome is and then if it is PD you can go from there as to Neurologists etc.
One thing I will say is…Its not necessarily the Neurologist that is best but the neurologist thats best for your husband and what he wants. You need someone you click with and who understands you and your situation.
I’ve actually realised after 20 years of living on the side lines with someone who has PD its not so much the neurologist you need the close relationship with its your GP. Generally you will see a neuro once every six months…the PD nurses will fill in the gaps and act as a good go between from you to the neuro if there are any problems but day to day we have found its our GP has been invaluable.
I do hope you can get some answers soon, please do let us know how you get on and Im always about if you want a chat 
Best Wishes
Beth
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Thank you Beth. My husband has been averse to seeing a GP for as long as I’ve known him, and hasn’t built a relationship with the ones where we live now. But he will go when it’s important and he’ll start that journey next week. He’s had severe neuro/respiratory symptoms for a long time which were taken very seriously but termed as idiopathic. These symptoms that we’ve started taking note of (including unilateral arm rigor) may mean we get closer to an explanation.
Thank you so much for your offer of support.
I think its a man thing? 
My husband is the exact same…trying to get him to the doctors has always been a challenge and I found out it was because he thinks ( man logic) if he goes and something is wrong he could end up in hospital ( of which he has a genuine phobia!) so if he just suffers in silence it might go away.
A great deal of my family also moved from London to Cambridge so I know it fairly well. Addenbrooks have always been amazing with members of my family and my Grandfather who had Pulmonary Fibrosis and went onto get Dementia was under the neurologists there and I must say they were very good. Generally you only see your neuro once every 6 months ( depending on the condition and severity) so its important if it is PD that the first people you contact are the Parkinsons nurses…they are gold dust and do help bridge that gap between visits…
We have the district nursing team, the Parkinsons nurses, The Carers Trust…and his GP so between all of them I can get most things answered and sorted pretty quickly. ( usually a week max) Once you have the network set up its so much easier than navigating the minefield and of course these people have all the “backdoor” contacts so it can alleviate a lot of stress.
Good luck at the doctors and I really hope you can get some answers
Best Wishes,
Beth
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Hi @Ant561 & @Beth13, I lived outside Peterborough & when diagnosed PD I was under Dr Buttery at Addenbrookes & he was brilliant at his job but I am the male who broke the mould so to speak, if I have a problem I don’t hesitate getting the it seen to. I have found that if there’s anything troubling us we’ve spoken to the Neurologists Secretary & they’ve sorted it out. Being down in Devon I now come under another great hospital & that being Southmead at Bristol under Dr Whoan & his team who for me are equally as fabulous at their job as what Addenbrookes is.
Les
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Thanks cruisecontroller.
Having moved on a bit in the last week, we now have an appointment at Addenbrookes. Not as soon as we’d like, given that my husband seems to be deteriorating quite fast, but considering the current backlogs and pressures on the NHS it’s understandable that there is some delay. It’s good to know they offer good care.
There is a family history of MSA (one of the Parkinson’s Plus syndromes, I understand) and my husband has a long history of deteriorating neuro/respiratory problems. So it’s good to know that people like Dr Buttery are involved in the Cambridge Brain Repair and Parkinson’s Plus research clinics, which may offer more specialised opinions. I’m not sure Dr Buttery is actually working at Addenbrooke’s NHS trust any more though - he’s not listed but there may well be sharing of expertise between the clinical and research staff.
One concern is that, if the Addenbrookes Neurology department needs to differentiate between Parkinson’s and Parkinson’s Plus, it appears from my brief search that Addenbrookes doesn’t do DaTScans? I’ve read that these are controversial in terms of false positives. But it would still be good to know if it’s available on the NHS in this region or whether, if we wait for the NHS appointment and find they don’t do it, we’d have been better off choosing to use BUPA and to have access to everything we need at the very beginning rather than wait months and then join the back of the private queue.
I appreciate that many have had excellent treatment from the NHS. Also that PD is different for each patient, and that therefore the facilities and tests that are needed for each patient differ very much. It’s just that we’d like to know that if something is needed, we’re not at an NHS facility that doesn’t offer it, or that there will be a long wait to have further diagnostic tests over and above an initial clinical diagnosis.
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Good luck & keep us updated on your progress.
Les
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