The UK and American Health care systems and Parkinsons.

I'll come straight out with it, I'm beginning to think that my ambition has exceeded my capability on this one. I've been working on this for a few weeks and am still unsure how this will work out. This is my third attempt and really I haven't come close to getting it right. I keep making the same mistake, I get bogged down in detailing the pro's and con's of the respective health systems, which whilst massively entertaining in many ways, misses the point. This is about Parkinson's care.

Actually, I'm certain, ambition has far exceeded my capability. Still, let's give it another go.

So that we all understand, this post is not about the different funding models.

Nor is it about the respective regulatory environment

Unless that is, it directly impacts PD care. So I need to keep my eyes on the prize and try to show a bit of discipline and stick to the point.

So whilst detailing some outrageous examples of Corporate and individual greed and, putting it mildly, unethical behaviour, such as that demonstrated in the great EpiPen scandal, lends itself to a sardonic, dark humour which would make for an interesting read, does it actually have anything to do with Parkinson's care?

For those who don't know and are interested however this is a good article about the scandal outlining corporate avarice, grubby politics and venal individual behaviour.

I've done it again, I just can't seem to help myself!

Knocking the US health care system is easy, and unlike the many untruths perpetrated by people like Glen Becks, a Fox News Commentator, about death panels in the NHS, have at least the virtue of being based on reality. However knocking the system has been done by many bloggers and vloggers, mainly American ones, better than me.

Besides this isn't what this post is meant to be about, it isn't directly relevant, except, as I've already said, where it impacts the availability of good PD care.

It has to be said that whilst reviewing the US healthcare system can be jaw-dropping at times, the examples of its more than occasional moral corruption are legion, the UK NHS healthcare system isn't without its own serious flaws and scandals. Shrewsbury and Telford NHS Baby death scandal anyone? 

As you would expect, the respective flaws centre around human nature; greed and avarice in the EpiPen scandal, and arrogance and contempt in the baby deaths scandal. Both scandals perhaps reflect the fundamental flaws in the differing ways of legislating and funding the respective healthcare systems.

Human nature being what it is, if you have few restrictions on the pricing of a service or product, those selling the service or product will exploit this and try to obtain the maximum price they can. If the market allows for easy entry of competitors, pricing typically self-regulates. In health care, such is the cost of entry and the barrier created by patents, the manufacturer often has an effective monopoly and if unethical, can and will exploit the market. And the poor die needlessly.

However, I'm getting distracted again, except where the flaws of either system impact Parkinson's care, it is not relevant to this post.

So must keep focused. Let's get started and have a look at the British model. The UK has a mix of Private and Public (NHS) Healthcare, with roughly 11% of the population holding private insurance. However private healthcare tends not to be comprehensive. It typically does not offer Mental, Maternity or Emergency coverage and what it does offer can be limited e.g. a monetary limit on out-patient spending every year. 

With Parkinson's, you have a significant voluntary sector offering support as well.

So let's detail the process. Not all my readers are British or based in the UK, so I need to do a bit of explaining. When I developed my first visible symptom, my initial point of contact was my GP or General Practitioner. These are Doctors located at a local surgery who treat minor illnesses and act as gatekeepers to Consultants, who is a 

hospital doctor of senior rank within a specific field.

So after asking me some questions and doing some minor tests my GP advised that they were going to refer me to a Neurologist. Interestingly she didn't tell me what she was referring me for, and me being male and a coward didn't ask.

Besides, I already suspected.

To speed up diagnosis, I used the private route and all too soon found myself being diagnosed with Parkinson's. Now I have good insurance and it's provided by my company, but as is typical, it isn't comprehensive. It covered diagnosis, but wouldn't cover ongoing Parkinson's support and treatment.

So back to the NHS.

Not much later I got the same diagnosis with the NHS, This meant I now had an assigned neurologist and my very own Parkinson's nurse..................................... NOT!

Well in principle I do but I have been diagnosed for very nearly four years and was meant to see my Neurologist every 6 months, at least so he advised at my diagnosis. In reality, he moved on to another Hospital in another part of the country and I have met my replacement neurologist twice since then. It should have been 6 to 7 times.

Same with my assigned nurse. In reality, there is only one nurse in my area, badly work stressed and again I have only seen her twice. Further, she has been privatised and is no longer employed directly by the NHS. So now mainly works and communicates by e-mail, telephone and zoom. Very occasionally a meeting will be seen as necessary.

Whilst this lacks a personal touch, she is, however, hard-working and conscientious and genuinely tries to do her best for her patients. It isn't her fault that the system is letting her and her patients down.

The situation is so bad in my area, that patients have been known to move to other parts of the country in the hope of getting more reliable care. It really is a postcode lottery with PD in the UK.

So let's take a little detour here to discuss why. Unlike the US system and most European systems where funding is insurance based, the NHS is directly funded by the Great British taxpayer. The government collects the tax and decides the funding priorities. It also wants to avoid the unpopularity of raising taxes to improve the service and simultaneously tries to keep control of the national debt. Allegedly.

What's that you say? Poll after poll has consistently shown the British public willing to pay extra tax to better fund the NHS. Well, I have only one word to say. Bollocks. What people say to an interviewer and what they do in the ballot box seem to be two different, contradictory things.

What? I can't hear you? Tony Blair,,,,,,,,, did you say Tony Blair? Well yes, his government did raise National Insurance to pay for extra NHS funding, but only after they had safely won a second election, after promising during his first term not to raise Income Tax and agreeing to the previous Tory governments spending commitments.

He wasn't deceived by opinion polls. He also succeeded in becoming Labours longest serving Prime Minister.

Not a coincidence I think.

The nett effect of this is spending on the NHS can fluctuate considerably, depending on the party in power, the strength of the economy and the state of the finances of the nation. Politics, and the political cycle, can be a serious determinant of funding, rather than the requirements of the NHS.

Some say we should have a regulatory system where the NHS spending is determined by a non-governmental body, rather than a politician.

Well sometimes a seemingly reasonable proposal, can be on closer inspection fundamentally misguided. If the state wishes to spend billions of taxpayer money, then it is the politician's job to take on this responsibility and make the decisions. This is a basic democratic requirement. A quango is not the right method by which tax and spending priorities are determined. With billions being spent, there needs to be a government minister bearing the responsibility for how this is spent.

That is a price to be paid, for the direct funding model.

However, the NHS is not the only part of the care system in the UK. There is also the charitable sector, which plays a significant and dynamic role in PD support. And the most important player in the sector is Parkinson's UK. So what does it do? Well in its own words;

"Funding the right research into the most promising treatments, we get closer to a cure every day.

Until then, we're here for everyone affected by Parkinson’s. Fighting for fair treatment and better services. Making everyone see its real impact.

People with Parkinson’s, scientists and supporters, fundraisers and families, carers and clinicians, all working side by side. Impatient for change, we’re taking a stand, speaking out, chipping in, and playing our part".

If interested, you can see greater detail about its activities here

But like the NHS, the services it provides vary from one part of the country to another. So some parts have a proactive, dynamic local area Parkinson's UK, with plenty of services and support, while other parts of the country have relatively little support and a struggling branch. Parkinsons UK, like many other charities in the UK, is struggling in getting volunteers in enough numbers and quality to run and support the activities and services of the branch.

So in summary the UK system is underfunded, and patchy, with a lack of appropriate specialists. It is, however, free at the point of use and if you wait long enough you will get the best available treatment.

You may not see a specialist from one year to the next, and if you have to review your medication, getting advice and a proper assessment can be difficult.

Otherwise, it's perfect.

Anyway, I managed to do the UK summary without too much distraction, let's see if I can do the same for the US system. And for this I need to give a big thank you to Jennifer Sullivan who, in my humble opinion has the best youtube Vlog on Parkinson's, called the Parkinsons Wiggles Project, look it up I can't recommend it enough ( Parkinson's Wiggles Project.) Please note however any opinion expressed is my own. They may or may not also reflect Jennifer Sullivan's, but this cannot be assumed.

On the surface at least there are a lot of similarities. With the obvious proviso that the US system isn't free at the point of use. And is very expensive.

So, hoping I've got all this right, and if I haven't I apologise, as in the UK, you need a referral to see a specialist (roughly what we in the UK would refer to as a consultant). This doesn't need to be by your GP, it could be by, to use the example supplied, a Podiatrist. However, you don't need a referral to see a Podiatrist! It would appear that this requirement only applies to the more specialised functions, like Neurology.

Once you are diagnosed, as in the UK, a whole range of treatments and care options are open to you. So you can get any required physical, occupational and speech therapy. As in the UK.

And like the UK, there aren't enough Neurologists and care specialists. Which actually surprised me. However, for comparison after extensive research and analysis, I found that it is estimated that there is 1 per 23,746. per population in the USA, in the UK it is 1 per 39,059, whilst the mean across Europe is 1 per 15,799.

So whilst the UK and the USA are clearly poor relations in comparison to Europe, the UK is the worst placed of the three.

I can't say I'm shocked.

And like the UK, the USA has an extensive volunteer charity sector. The US equivalent to Parkinson's UK, is the American Parkinsons Disease Association and to quote its website is there to ensure that;

"People with Parkinson's disease can find local support groups, educational programs, health and wellness activities, and events using the search tool on the APDA's website. The Parkinson's Foundation also offers information about local resources, support groups, wellness classes, and educational programs"

So the US and UK systems are similar? Right?

Well, the elephant in the room on this is funding or paying for treatment and here there is a big difference between the two systems. As an example I pay £108.30 a year for all my medication, using a pre-payment certificate. The equivalent in the US, for standard PD medication only is $14,177 (£12,327) per year. This doesn't include the cost of seeing your neurologist, care nurse and therapists. All of these are supplied free by the NHS in the UK.

So great, in the UK you can afford to see the specialists you need for your treatment and care needs, it's just that there aren't enough of them, so you inevitably have to wait for a long time. In the US you can see them when you want, you just can't afford to.

So how is this all funded in America? Well, there are multiple routes. First, there is Medicare which funds treatments for those over 65's. Which covers the majority of PD patients. PD is more prevalent in the over-65s than in the young. Roughly 5 to 10% of PD cases are diagnosed in the under 50s and this sector is much more dependent on access to quality insurance schemes. Whilst 50% of Americans are covered by work-based schemes, these schemes stop when a person leaves the employer or is unable to work. It is estimated that 8% of Americans have no insurance coverage at all.

And your insurance rarely covers the whole cost. Co-pays (excess in UK terms) can be expensive. So even for those with decent coverage, the costs for treatment and care can come to many thousands every year. And there is no cure, so you have to hope you have the funds to afford your insurance, which if you are no longer able to work, can be an issue in itself.

Long before your 65th birthday and the haven of medicare becomes a reality, you may find yourself unable to afford the cover.

So there you have it, two systems with big problems. It would be easy to say that the problems with the UK system would be easily resolved with more taxpayer money. But we have had the NHS for 74 years, and as the availability of new, increasingly expensive treatments, becomes accessible, there is a truth that our politicians are scared of telling the voter. Yes, we need to spend more money on the NHS, BUT it is a money pit. There is always going to be more money needed and as the costs of treatments have always increased at rates higher than inflation and also, growth in the economy. Difficult decisions are going to have to be made.

The American system needs to be ripped apart and started again. The current system is both unnecessarily expensive, and too much is spent on admin costs. Those who complain about NHS inefficiency really should take a look at the US system. It is estimated that 34% of US care expenditure is admin costs. Driven by administering the payments system. For comparison, the OECD estimates that the UK spends 1.2%, whilst the EU average is 3%. It is corrupt, greedy and immoral, only sustained by lobbying by the big insurers and politicians who care more for their pocket, than they do for their constituents.

So whilst the PD care systems have broadly similar outcomes, for all its faults, I am grateful for the NHS.

Now I'm off for a pint. I'm going to be more careful about what I promise to post in future!!