Parkinson’s and private healthcare


Just wondering if anyone is willing to share their experience of private healthcare in relation to Parkinson’s?

I’ve worked for the NHS as a nurse for the last 37 years and am reluctant to consider alternative options however, since being diagnosed nearly five years ago and as my condition has worsened I have felt increasingly frustrated with my treatment under the NHS (poor outpatients timings, being overlooked/non return of phone calls, lack of responsiveness). I understand the strain on the NHS from first hand experience but am at a point where I feel compelled to look into alternative options.

Does private healthcare offer any benefits to Parkinson’s patients specifically (other than a comfier bed and shorter wait time!)? I’m interested to hear any and all thoughts on this.

Many thanks.

I live in the USA. The country that tells us that everyone should pay for health care. To be honest the non paying customers get the same treatment as the payers here. It is the law. My wife is a RN for over 40 years. She has always said she sees no difference.
If you have the same laws in the UK. I think your feelings would be universal Insurance or not.
The fact is people are living longer. The average age of the population is probably getting older. One of the factors in getting Parkinson’s is older age. And there is a country I might know of that has cut regulations on polluting the air! (probably toxins effect parkinson’s)
The truth I believe Ins. or not the wheel that makes the most noise gets the most oil.
But the noise through my wife I have learned is that clarity of the major problems. Not bringing up every little thing that only overloads the time slot. Showing the health care people you are complying to the tee what is prescribed. Builds a patient /doctor bond that gets faster treatment time.
As you can see for the most part the laws in place slow down the system. The sluffers that don’t exercise, take their medicine on time, and have a low tollerance to just normal life experience. Clog the system for all. Just my opinion. Tom

My view is that private healthcare (in the UK) is like flying business class: nice check-in, no waiting in long queues, but the destination is the same whether you travel in the front or the back of the plane and you pay an awful lot for a better seat…

I started off privately, paid £300 for my first prescription, and concluded there was medically no difference in my treatment, so switched to the NHS.

But there is a better service. And a free cup of tea in the waiting room…

Hope that helps a little!

Thanks JF, that’s a good way of explaining it! I thought that might be the case.

I think it depends very much on what you need. We saw a movement disorders specialist privately for a second opinion after a very poor experience with a non-specialist neurologist at our local hospital. As an ex-nurse myself, I couldn’t believe quite how unpleasant and out of date this person was. The new consultant saw my husband privately a couple of times, made the PD diagnosis and then transferred him under his team at his NHS hospital. The NHS team are great - and the consultant equally good in his private and NHS clinics - but FU appointments often delayed by a couple of months because of NHS pressure.

We are still undecided about what to do longer term, as there is more time to talk and what feels like more personal care with private appointments, it’s not just about the coffee! Everything seems so pressured in the NHS these days, in secondary & primary care, but as my husband inevitably gets worse it may be easier to access other services from within the NHS system & we do not have unlimited funds.

Thanks, Mountainair,it’s the care inbetween appointments we find lacking, if you start new meds and they don’t go to plan? Have tried to contactthe consultant through his secretary with no joy. GP, unable to help, had to wait until next consultant appointment!,

Private health care will be expensive and other that shorter waiting times for your appointment the treatment offered will be the same. Also unless you had private medical insurance prior to diagnoses insurance will not cover cost now.

The UK has been our model in the USA in allot of ways. Pre existing conditions NOT COVERED. Money first. Bettyblue thanks for your post. Seems like we are all in the same boat. Trying to remove the water before it sinks. The world would be in a better place if we all worked together to fix the holes in the boat.

My feeling is that GPs are sometimes a weak link too & it really depends on how knowledgeable and proactive the GP is. We have one excellent GP in the practice who is interested in “elderly”(!) care although she works part-time and we generally have to wait 4 weeks before getting an appointment. She seems to know a lot about PD in general and the associated problems & is the GP who made the neurology referral 18 months ago. My husband now has problems with blood pressure control and as his consultant appointment has been postponed for a couple of months, she has initiated investigations herself and is writing to the consultant for his advice.

This is in marked contrast to last summer when my husband was seen by a different GP in an emergency and long story short ended up being referred for opinions to three different hospital specialists because the GP didn’t know what to do - both unnecessary had we seen a more knowledgeable GP. But then again, the GP in question had specialised in paediatrics!

Thanks Bettyblue and Omahatum, it’s interesting to hear you have the same problems in the USA.

I have experience of both nhs and private consultations. We have private cover through my husbands work and I used that at the urging of my gp when I didn’t seem to be getting anywhere with a diagnosis. My gp was great. I wasn’t that impressed by the private care (one consultant asked my husband to google something on his smartphone). There was no real follow up after tests or appointments but I think it was useful to exclude certain possibilities. The private health insurance company were very sticky over funding a neuro-psychologist appointment saying it was disqualified because it was a psychiatric problem even though the referral clearly stated it was part of a neurological investigation.

Once I was diagnosed with PD the private health insurance said they would cover no more care or consultations as it’s a chronic condition.
However nhs has been great now I am diagnosed with access to physio, occupational health, Parkinson’s nurse, speech and language and neuro-psychologist. There is a wait for appointments but they do happen and are useful. I also now have an excellent consultant. I appreciate it’s a bit of a post code lottery but no one will turn round and ask how you will pay with the nhs.

At least the GPS were concerned and tried to help!
I don’t suppose you get many children with Parkinson’s!

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I’m glad you are well supported Rubyduby,and you feel you are receiving good care. I am a great believer in the NHS (having worked in it for 35 years) I just feel everyone is expected to spread themselves so thinly. What help do you get.from the. Neuro-psychologist?

@Jo-I. The neuropsychology consultation is about a concern over some cognitive decline. Although it has been a long wait for an nhs appointment the testing has been much more thorough than with the private dr.

Like Rubyduby I have experience of both private and NHS care over several years.
The private care was great when I was first diagnosed - I got a series of tests done very swiftly and that minimised the anxious waiting time before getting the result. As JF says, the destination was the same as it would have been with the NHS (some of the tests were even done in NHS facilities) but in my case I got there quicker.

In the years that followed I had a mix of private and NHS care for various reasons. My private neurologist was not actually a Parkinson’s specialist but by seeing one person for a few years he got to know me personally.

In the NHS I was seen by a multi skilled team with a powerful combination of Physios, Speech Therapists, Neurologists, Pharmacists and Parkinson’s Nurse Specialist. The people changed from time to time but they were all Parkinson’s specialists. The NHS also gave me access to participation in research studies which has been very valuable to me.

Perhaps I have been lucky in my choice of NHS settings but in the long run the NHS care has been the better option. I’m pretty certain I’d have been better going straight to NHS after diagnosis.

I hope that helps

Elegant Fowl

Thanks Rubyduby.

Thanks Elegant owl, this is probably the conclusion I have come to.

I went to a private consultant two years ago in order to speed up diagnosis and also because I was not impressed by the NHS consultant I had seen. I stayed with the same private consultant, at my nearest Nuffield Hospital until recently when I switched back to NHS care.

The main advantage of seeing a private consultant was the speed with which I could get an appointment, but now that I’ve been diagnosed a couple of years that is less important, since my NHS consultant will see me on a regular six monthly basis.

The quality of the consultant was the other issue for me. I’ve got over that problem by switching hospitals. The neurology department of the NHS hospital I’m attending now is prestigious, whereas my local hospital didn’t even have a neurology department, just visiting neurologists from another hospital running a weekly clinic, which meant no guarantee of continuity of care.

Seeing a private consultant does not bar you from seeing the NHS Parkinson’s nurse in your area, or being referred to the neurological physiotherapy service and I have used both. Unfortunately, the NHS Parkinson’s Nurse for my area took fifteen months to give me an appointment and does not always respond to phone calls, so I’ve often found the Parkinson’s UK advice line more useful.

The cost of private care is affordable if all you want is to see a consultant. I paid £160 a time. I got NHS prescriptions. I’d already had an MRI scan on the NHS before I went private, but at around £350, I could also have afforded to pay. However, I doubt whether I could afford the more expensive procedures such as DBS.

For me, in the long term, being a squeaky wheel for NHS care is probably paying off better than paying for private treatment.

Totally agree bb.

As an update, I have now switched back to the private neuro. I was prepared to see the NHS neurologist less frequently than the private, but not wait more than 14 months for a follow up appointment.