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NHS: The Good, The Bad, And The Blood Boiling

Given it’s not a secret that I have some history of health problems, you can imagine that I end up with a fair amount of experience of different healthcare systems: the Italian SSN, the Irish HSE, and more recently the English NHS. And like many others I have a very nuanced view of healthcare because of this.

To make the obvious very apparent, I am totally a believer in public healthcare — it’s the primary, though not sole, reason why I don’t want to move to the USA after all. I don’t believe there can be a modern civil society in which sick people need to make a decision between calling an ambulance and save their life, or being able to afford a meal. You’re not welcome to try to change my mind on this matter either.

On the other hand, I would be lying out of my teeth if I told you that everything around public healthcare systems is splendid and great. Like many other situations in life, things are nuanced and varied. In Italy, one hospital nearly killed me, in three separate occasion — and I have a feeling that they would probably have killed me if I had listened to them fully. Whereas another hospital in the same region saved my life promptly. And even there, the head of Gastroenterology, was unaware of the existence of HIT.

While I could probably write a bit about the Irish HSE, I’m not going to do that today, first because my experience is quite out of date (I haven’t lived in Ireland for over five years) and also because there’s plenty enough for me to write about the NHS.

So first of all, I would want to say why I’m using the word English here — the thing is, when people think of the UK, they think of a single country that is the same, North to South. But if you have lived around here long enough, you know how the different countries that form the United Kingdom like to do things differently. So in particular, NHS is fairly regional to the best of my understanding, and I only have experience with the (West) London part of it.

Obviously, the good is that the NHS works, and is not going to leave bankrupt or dead. While I have had no real need for urgent care (with the exception of one single alergic reaction that is still not clear to me — wow was I high when they gave me the antihistamine!) setting myself up with a GP (General Practictioner) was among the top priorities for me once I settled in London, and the hardest problem with that was figuring out one that would be open on at least the Saturday. Although I did find annoying that I couldn’t choose the one slightly closer to home, and on the way to the station I commute with because it’s technically in the next borough over.

To be honest, the first impression of the GP was… mixed. Reviews on Google Maps (yes, there’s reviews of GPs on Google Maps, and it’s worth taking a look before choosing) mostly complained about the administrative staff, which turned out to be mostly red herrings, unsurprisingly. My experience with the staff is that they are overworked, and get a lot of abuse, which makes them default to be quite curt with people reaching out — but once they know you, they’re actually quite friendly, if a bit old-fashioned.

When I moved to London, online GP services were quite limited — NHS didn’t have a generalized app, which I believe only came to be, or came to be socialized, with the pandemic and the need for COVID-19 vaccination passes. So while the admins did sign me up for the service, they didn’t at first enable anything but the ability to book in appointments and order repeat prescriptions. It took another, younger (which I believe is relevant here) receptionist to activate my test result application.

I’ll overlook the funny question of «But if you were in Dublin, why did you not have an NHS number?» — the Londoners’ forgetfulness of their own history is not just a stereotype, believe me. In terms of being knowledgeable in their field, my experience is that it’s a toss-up, so you should be able to gauge whether the person you’re talking with is who you need, or find a replacement. The first GP I interacted with is also diabetic and was a fantastic experience working with her, particularly as she knew which parts of the script would be perfectly obvious and didn’t need to dwell into — but when she went on maternity leave, the replacement doctor I found couldn’t figure out why I was asking for a specific colour of insulin pen in my prescription! (Turns out, if you take two types of insulins, you do want the two pens to not look the same on the outside, that’s why they make distinct colours!)

Unfortunately, in the intervening five years, things have gotten more complicated, and not in a good way.

If it’s not clear, I’m not a luddite, and I’m unlikely to become one. I welcome technological solutions that can make people’s lives easier, particularly when it comes to healthcare. Much as I understand the privacy concerns, cloud-based blood sugar monitoring services are good for diabetics. And so I have a fairly nuanced view about the whole discussion of digitizing medical records, and letting a central authority access over these.

And so it shouldn’t be a surprise that what I count as “The Bad” is the fact that every system within the NHS appears to be unconnected to each other. As a diabetic, my interactions are split at least between four different entities:

  • my GP, that writes and renews my prescriptions;
  • my pharmacy, that receives the prescriptions from the GP and provides me with the actual medications;
  • my local hospital, with whom I have multiple yearly reviews with diabetologist, dietician, and nurse — and has access to my LibreView data;
  • an ophthalmology clicnic that once a year screens my retinas for possible retinopathy.

In addition to this, I found myself going to a different hospital for some dermatology problems, and at some point my opticians referred me to a different eye doctor due to some badly measured eye pressure. The end result of this is that I have multiple hospital numbers all connected to the same NHS number, and logins with many different online systems.

Up until the NHS app an the NHS login were introduced, there was no single point for patients to access their information in one place, and I believe to this day there is no chance for one hospital to directly access the record for the other. And if you believe this has no relevancy to the health of individuals, think again.

To give you a very practical example, my GP requires me to renew my insulin prescription every six months — not to re-order it, I can reorder it at a decent frequency through either their own online system (more on that later), but to have it reviewed on whether it is still relevant. Spoiler alert: I’m not going to get cured from diabetes unless significant medical progress is made, so yes, the prescription would still be relevant.

Now, to be fair on them, it is possible that the medication regime for a diabetic would change. But if you’re already been followed by a hospital team, they are the ones changing said regime, and would be sending a letter to the GP, as they do at every yearly review. Effectively, the review does happen yearly, but with the hospital team, not the GP — but the GP does not take this review as valid, they do need to let the prescription go to “need review” state until they can confirm it again.

In the middle of the COVID-19 lockdown, getting an appointment to review these prescription took a significant amount of time, and actually had me come quite close to not have enough insulin for my daily routine! Thankfully, I’m privileged enough to have a private health insurance with a GP service able to write me a private prescription just in case (and afford it) — and I did manage to get my NHS prescription just in time.

Again, all of these are annoyances in the grand scheme of things, particularly when compared with the horror stories you hear from the USA with bills for ambulances, natural births, and insulin. So they are bad and sometimes a risk to patients’ health, but they are not «I’m running out of here» bad.

But then there is the blood boiling. The stuff that raises my blood pressure and my voice, and pound the table of the coffee shop when I’m talking to people about them.

First of all, let me go back to the prescription renewal above — as I said, despite the fact that the hospital sends a letter (virtual, but still formatted as ready to be printed on A4 paper and stuffed in an envelope) to the GP every year to confirm that my medication regime has not changed, the GP cannot do much about it. And by now I know it is actually out of their control — when I complained about having to review my long acting insulin prescription again this year a week after talking to the hospital specialist, I asked the latter to get in touch with the former about it — which prompted the chief GP for my surgery to call and explain that the problem is in the patient management system that they use, like all of the “North-West London” NHS surgeries (how Brentford ends up being in North-West I haven’t gotten an explanation for) as it does not allow approving a prescription that is already approved, nor provide an approval for longer than one year.

As a programmer, who worked in software engineering teams for over a decade, and spent years before that working directly with customers, this is above annoying — this is clearly a lack of connection between the customer requirements and the implementation, and worse yet not one that appears to be set in stone, given both the hospital and the private GP have been taken aback by said limitation!

But that’s not yet the blood boiling part. The blood boiling part is seeing what, out of experience, I recognize as tons of separate private contracts that are taking money from the NHS that I would personally rather see spent to pay doctors, nurses, and admin staff.

The first time I got angry was when my GP insisted for me to sign up for the newsletter of a new service they introduced called Know Diabetes — which has significantly changed since they insisted, but has kept a similar… strange feeling. When I signed up for it, the website was literally a dozen pages with very generic Diabetes-related content, a long profile on the doctor who wanted this project done (Tony Willis), and links to other websites to find any locally-relevant content, despite it being targeted to North-West London from the landing page.

Since then, the site has clearly seen a lot of investment both in time and money, as can be identified by the high-gloss presentation, although the “Meet the Team” hasn’t really improved much, with most of the team being transformation specialists who are basically building a regional website with… basically no regional information.

All of the information present on the website are effectively generic, from the description of types of diabetes – that just sends you back to Diabetes UK for non-type 1 or 2 diabetes, and completely omitting the type 3c which is what I have – to the diet and carb counting techniques. And any other information that might have local implication just sends you somewhere else — you could have expected a directory of local gyms and sport centers that might give you a discount as a diabetic, but no, they just redirect you to Get Active. And their videos? They’re actually from We Are Undefeatable.

But, as of last year, they allow you to sign up for an account! With NHS Login! They just want…

MyWay Diabetes will use your:

  • NHS number
  • date of birth
  • last name
  • identity level
  • email address
  • registration details for GP online services
  • GP surgery’s name and address
  • first names
NHS Login Page

Uh, yeah, no. Remember how I said I have nuanced opinions about digitization of records? I do think that GPs and hospitals should have an easy access to your records from other NHS services, I do not believe that you would need to share all of these information to a private company – MyWay digital health runs the website – just to allow them to collect more information about you.

According to their own page, what you can do with their account is «Patient Record Access» (available on the NHS app with the NHS login, no need to sign up with MyWay!), «Programmes […] Know Diabetes will keep you informed and updated» and «Email campaigns» which sounds to me like they ran out of ideas to fill a 3-columns widget! And that’s without counting on the fact that the website, dealing with quite sensitive health information, includes analytics from three different firms (Google being one) and three separate CDNs.

What I think of this website is that it’s a waste of public money. The most “locally useful” part is the translation done in a number of African and Asian languages, but even those would be better placed on the Diabetes UK website where they would be targeted not just to North West London. And, let’s be honest, French and Polish already have enough of the material to handle diabetes without North West London funds being spent for them — sorry folks!

So this feels to me like an ego stroke project — which, it wouldn’t be the first and it won’t be the last. But at the least you can totally ignore it if you don’t have diabetes, if you don’t live in North West London, or if you recognize it for what it is. It’s blood-boiling, but it basically only shows a waste of money.

What had me properly boiling last time, though, is figuring out that my surgery, that at the beginning of the lockdown had to switch to a “send an email, we’ll call you back” process, that originally didn’t want to give me access to my test result online, is currently advertising four separate online services, with a full page titled «Online Services Explained.»

The distinction of these services is difficult to understand for me, a professional software developer, with significant experience in private data safekeeping! I can only imagine how this looks for someone who is not as flexible in terms of practices.

At the time of writing this post, three of the four services they suggest allow you to order repeat prescriptions. Of those, I know for sure two allow you to put in notes, but only one of them reaches the admin staff of the surgery (I haven’t tried the third one.) But the only one I was told to use to contact them is PATCHS which (as the domain suggests) is a project of an AI-buzzwordy company, that has Analytics in its name, and in my experience is only used as a fancy Google Form — it is possible this gets bucketed by keywords on the GP side of the app, but if that is the case, I can’t imagine why this couldn’t be connected to one of the other ways to contact them!

And of course, all but the NHS app and website are private companies providing these services, to either the GP or the local NHS regional entity, in the latter case not even giving an option to the GPs to find alternative arrangements (so the argument of free market is not a valid one.)

And, I mean, it doesn’t look like there’s much of a call for efficiency in terms of providing the services anyway — my surgery is one of three that are based in the same building. The only thing they appear to share is the waiting room, as everything else, including the appointment check-in kiosks, is duplicated — and almost identical. Their websites are so similar that in at least one case, we sent a message to the wrong practice. And it’s not even a random chance: they seem to all have signed up for the same website generator, which effectively uses the same templates for all the pages.

Again this is a private company, with very little in terms of privacy considerations: my GP’s website loads the Facebook SDK on their landing page — and much as I don’t think that’s necessarily evil, or I wouldn’t be working for Meta, it does feel like this platform has not been necessarily designed with the level of privacy that health information would require.

Obviously, the world is complicated and for the most part, GPs are professionals that make business decisions to be able to make a living. But I can’t imagine how wasteful it feels if there’s a whole cottage industry of MSPs, sometimes with a single employee, able to make a living out of these. Particularly since I don’t expect different GPs needing a lot more than contact information on their page, since health guidance is already provided by the central NHS site!

Effectively, what I’m saying is that the problems that NHS have have a lot less to do with it being nationalized… and more to do with it not being nationalized enough!

There is also another important thing to note: the budget for the companies involved here is usually tiny by Tech standards. Looking at the balance sheets on Companies House, the turnover appears to be in the ballpark of half million pounds at best. This is more important than people realize: as an individual contributor in Big Tech you may take home more money than some of the companies involved, as a whole. When the discussion of private services for the NHS come up, it’s usually related to big contractors, but these “tiny” companies are the ones that are likely adding the least value to the service in my experience.

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