Encouraging the NHS to build a small web service

Have you looked up folks in leadership or decision making roles at NHS Digital on LinkedIn and reached out to them directly?

Simon Bolton is their CEO equivalent. firstname.lastname@ nhsdigital.nhs.uk

https://twitter.com/simonrbolton

This is a sales job. Sell them aggressively (in the sense that it solves a problem, not necessarily monetarily). Failing to get traction with NHS Digital, reach out to potential non profit charities that are advocates for cancer screening and womens’ healthcare. Let them be the force multiplier asking why a solution you propose isn’t used or provided by the NHS. Let the value proposition speak, and do not be apologetic about being loud about it.

Thanks. Sales isn't naturally my thing. I'm sure you're absolutely right though, I'll try him.

I'm trying Cancer Research UK too, though their policy team's email address on the website bounces as it's for whitelisted recipients and the generic email response to tell them about it says to expect them to get back in a week.

550 5.4.1 Recipient address rejected: Access denied. AS(201806281)

Bah! Simon Bolton doesn't want my email. I'm reluctant to publicly tweet him a link to this, largely because my twitter account has followers and this is tangentially about my mum's own health.

Drop an email in your HN profile, I will reach out to help.

The most likely route of getting something like this going would be to add cancer screening status to the NHS App [https://digital.nhs.uk/services/nhs-app]. The NHS app already provides access to a patient's basic medical history and prescriptions.

There is also quite a lot of work going on in this area that might be of interest: [https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks...]

I'm very sorry for what she, you and your family are going through, I really hope she'll be OK.

We [1] are one of the companies who are trying to make "this" happen. "This" meaning: providing a holistic, complete health record for patients (including appointments, radiology, lab results, etc.). It is not trivial: one of the largest failed IT projects in history is the digital integration of various NHS systems (https://www.theguardian.com/society/2013/sep/18/nhs-records-...). Our goal is to provide patients complete access to and full control over [2] their medical data. So we're in the process of building what you are proposing, but it's not a fast process.

It is primarily not a technical problem -- it is a problem of trust, coordination, aligning incentives, legal issues, etc.

[1]: https://patientsknowbest.com [2]: laws and regulations don't allow 100% control

I don’t doubt your sincerity and commitment but I find PKB a real problem. I don’t want this 3rd party to hold my information.

I found it difficult to de-register on attempt 1 through my GP. I see now you can email PKB support to do it directly as a patient so I’ll give that an attempt. But frankly services without an automated online de-register smell.

Edit: it seems this will only remove my email from being contacted and my data will still be held. (Yes, I know it’s encrypted etc).

I suspect I’ve already lost. My GP and the hospitals I regularly visit must be users. I have no choice. The business model rattles me. I understand and accept the NHS using private suppliers for IT (eg Azure, design and dev partners). But a model when I’m effectively a customer of the 3rd party is not a situation I’d choose to be in.

I understand your distrust. I also agree that for most of the reasonable requests you should not need to email any service provider, including us. We're working of fixing that. The reason why it's not that straightforward (not just a simple delete operation) is that data about you might not be data that only you have control over. That's not something I agree with, it's just the law. So "deletion" is actually a very complex task to get right.

One of the reasons 3rd parties like us hold your data is because apparently private sector is often more capable of iterating and implementing working systems at lower cost than governments. I am also often torn on what should be publicly owned and what should not, but the governments' track records show that it is not trivial to run engineering teams under direct state control.

Yes, the private sector IS often more capable of iterating and implementing working systems at lower cost than governments. Government and the private sector can work together on large scale core national infrastructure projects where the assets are owned by the public and are even published as open source. No need for a state controlled engineering team. I know this to be true, as it has been my job for many years to make it happen.

Hence the original comment that it’s the business model that grates - NHS could have engaged and remunerated a supplier without selling me as a customer. The 2 out of 5 trustpilot score shows I’m not alone in my thinking.

Maybe interesting insight: trustpilot scores can almost exclusively be attributed to whether a patient has data in the system about them or not. If a person does get data, then it's a 5. If a person has an empty record, it's a 1. And that only, exclusively depends on whoever is holding the data, eg. the trust, hospital, etc.

(I don't think you're sold, but maybe this is not the best forum to discuss this. Happy to continue through mate at companydomain.)

Unfortunately the NHS is [broken]— — — —[sub-optimal] (choose where on the spectrum you wish to stick your pin) “architecturally”. I dont mean technically, although yes there are problems there. I mean in the way the various parts of it are arranged as a whole and regionally. To fix this will require another major reform and since the UK has (foolishly IMO) collectively decided the NHS should be the national religion… nobody in power is going to reform it. It’s like the 3rd rail of British politics. Touch it and you die. A real shame.

Back in the 1950s when the NHS was created, it was doing a very different thing to what it's doing now. People are living longer, there's more treatment options for everything, there's new branches that never existed - all kinds of stuff. The NHS was never designed for the sheer scope and magnitude of what it's doing now, and it shows.

The OP makes the point that there already is a primary key. It strikes me as the standard enterprise response to say, we can't fix your thing til we fix the whole thing, and fixing the whole thing will never happen.

My suspicion generally is that fixing small things at scale is more likely to lead to enterprise level results than trying to fix big things in a particular silo. But, it's just a feeling.

Refactoring, in other words.

I wonder if OP has spoken to NHS Digital.

I see they have.

OP, there's a trick to navigating bureaucracies, you just bounced off the armour.

You need an insider, someone you can have an off-the-record chat with.

You say that, but the government is currently engaged in a new reform of the NHS. Having previously pushed decentralisation, competition and increased use and engagement with private providers (Health and Social Care Act 2012 [1]) they are now reversing their position and instead centralising control of everything, abandoning competition, disbanding many of the bodies they created and recreating old ones with new names [2]. This constant churn of politicians with new ideas about how to “fix” the NHS is a big part of why it’s broken.

You should also remember that the British public says they love the NHS but they don’t like paying for it. Current health care funding per capita is well behind other equivalently wealthy nations [3].

[1] https://en.wikipedia.org/wiki/Health_and_Social_Care_Act_201...

[2] https://www.kingsfund.org.uk/publications/health-and-care-ac...

[3] https://www.ons.gov.uk/peoplepopulationandcommunity/healthan...

Except the NHS has went through multiple massive reforms. Like the Conservatives instituted one after they came to power in 2010 (after famously promising not to institute a massive top down reform pre-election they promptly went ahead an did probably the largest change since the formation of the NHS)

I completely agree. If you criticise the NHS on Reddit you're instantly branded as a Tory sympathiser who just wants to destroy it, even though it's pretty obvious that there are loads of things that need to be improved.

Appointment booking is probably the most obvious clusterfuck. I still can't book appointments with my GP online.

We got a referral to ENT for a child. They sent us a letter, telling us to call them. On the phone they said they have chosen an arbitrary appointment date for us and will send the details in another letter. When we get that letter, if the time isn't convenient then to call them back to rearrange it. Madness!

It is very very slowly improving, so I think eventually these sorts of brain dead issues will mostly go away. Hopefully while I'm still alive.

> I still can't book appointments with my GP online.

You can, you just have to decide which of the myriad fly-by-night apps you want to (give access to your data and) use.

Bafflingly insane IMO, the list of random scammy sounding private companies I was given a non-exhastive no-recommendation list of when signing up to a new GP. Why isn't it just one 'NHS GP' app?

I say this as a staunch Conservative. What are they possibly going to compete on?

> You can

I can't. As I understand it, it's organised separately by each surgery. So you might be able to but I can't. That also explains the use of sketchy apps!

> Why isn't it just one 'NHS GP' app?

Completely agree. They already have an app!

Who is They? GPs are typically small independent businesses contracted to the NHS, which is one of the reasons for the fragmentation.

The NHS of course. GPs already have to interface with other NHS systems.

I will counter this with the following.

My mother turned 60 late January this year, she received a bowl cancer screening kit which she did and they recommend she come in for a colonoscopy, which identified she highly likely had bowl cancer. 3 Weeks later she received the results for a CT with contrast scan which found no evidence of cancer else where in her major organs and nodes. 3 Weeks later she is having surgery to remove the cancerous bowl.

All for free.

Tell me again why America has the highest rate of Stage 5 Cancers over 65.

Just because the NHS doesn’t fail in all scenarios, or even most scenarios, doesn’t mean it doesn’t have serious problems.

GP isn’t making any claims that the US system is better, they don’t even mention the US, they’re pointing out that the NHS has some pretty serious deep seated issues. Which quite frankly should be obvious to anyone who’s interacted with it.

Knee jerk responses like this are precisely why attempting to fix the NHS is political suicide. It impossible to even have a open discussion out the problems the NHS faces without people piling on to defend the NHS and drown out criticism.

Personally I worry about the future of the NHS. The inability to have an honest and open discussion about the future of the NHS means it’s just going to continue lumbering on until it collapses completely from extraordinary pressures it’s placed under.

> The inability to have an honest and open discussion about the future of the NHS means it’s just going to continue lumbering on until it collapses

Agreed. Unfortunately, it often seems that "honest and open discussion" rapidly segues into rancour. The NHS is a behemoth, and healthcare can be astonishingly complex.

The NHS was designed for different times and different needs. It's been hacked about and is struggling to hang together. It's a political football, and it's been under-funded for years, probably decades. Cash isn't the only way to fix things, but it's a big part.

To counter your counter and to refocus the point on the potential improvements for the NHS. I think the parent is correct with regard to the NHS there are a lot of issues with it. And with meaningful consequences for people's health and well-being, but having followed discussions about it there seems to be an overt focus on comparisons to America and American healthcare costs. The UK and by extension the discussions on issues with the NHS would be better served by comparing and looking at healthcare costs and outcomes of other neighbouring peer countries. Such as the Netherlands or France. Or even further afield in the likes of Singapore.

Note, I'm neither from the UK nor America, and looking in from the outside this aspect of the UK discussion comparing and contrasting with America seems to be the wrong idea.

The NHS has been unable to send an ambulance to me in two separate cases in which the operator confirmed I was high priority.

5 years apart. Once in York, once in Bedfordshire.

But it doesn’t matter —- it’s anecdata.

The NHS has a lot of data available. Some is public, some available only to those that have a commercial relationship with them.

There are areas in which the NHS is exceptional — generally those areas which require no personalisation of care and a mass-production style of work (e.g. cervical smear tests and their associated health outcomes) - and then there are the many areas in which it really is appalling.

Lionising the NHS doesn’t help it. Opening discussing its faults does.

Your mother was quite lucky, the NHS doesn’t do much prevention compared to other healthcare systems. Everything goes through GPs, that are the medicine homologues of a guy that works in IT and can set the background of his Drupal blog. GPs have budgets, are very vocal about it, and would rather run silly experiments for months than writing a referral (the latter impacting on their budget). My girlfriend’s GP wanted to change her birth control pill because it was too expensive, and he has a budget (it’s not a problem anymore, because thanks to Brexit that pill is no longer available in the UK). Children are not assigned to a paediatrician and women are not assigned to a gynaecologist. Women go through pregnancies without ever seeing a person with a degree in medicine, it’s all handled by midwives. If you want access to western medicine you either have an insurance or you’ll have to spend 200-300£ per visit. For some weird reason the NHS has you covered if you need a magician, such as an osteopath, or some magic homeopathic pills.

The NHS has seasons, for instance a few years ago it was chlamydia season and so I was forced to go through a chlamydia screening, but it proved impossible to get tested for any other STD. It is possible that your mother was saved by the colonoscopy season.

> Everything goes through GPs, that are the medicine homologues of a guy that works in IT and can set the background of his Drupal blog.

I don't follow you. GPs go through specialist training and assessment (general practice is, perhaps paradoxically, a specialism). The comparison you draw seems to be with someone who is unskilled. Can you explain? Perhaps I'm missing something.

While it seems true that GPs are the gate keepers for referral to secondary care, this is largely due to factors that are outside the control of GPs themselves.

I'm not sure I understand your complaint. Do you expect to have direct access to pediatricians and gynaecologists without referral? There simply are not enough of them for that. I'm curious; without being identified as someone who needs specialist care, why would you want access to someone like that? The -icians and -ologists within the NHS deal with specific situations. Perhaps you think you'd receive better care if you simply had direct access to secondary care. Fair enough.... so, that itch you get occasionally, or that nagging ache... are you going to visit the neurologist, or the rheumatologist, or the radiologist, or....?

> GPs have budgets, are very vocal about it

I've literally never heard a GP mention budgets to me as a patient. Or are you referring to GP representation in the media?

> would rather run silly experiments for months than writing a referral (the latter impacting on their budget).

You say that GPs will knowingly experiment on their patients to save money. Are you sure that's what's happening?

> My girlfriend’s GP wanted to change her birth control pill because it was too expensive

Is that actually the reason they gave? Or something you've inferred? Did they, perhaps, want to provide your girlfriend with the service she requested, using what they had at their disposal?

> I don't follow you. GPs go through specialist training and assessment (general practice is, perhaps paradoxically, a specialism).

You spend 20 years prescribing paracetamol and homeopathy to old ladies and you eventually stop being a real doctor, like somebody who takes a PhD in computer science and then spend 20 years replacing hard disks in a call center.

> I'm not sure I understand your complaint. Do you expect to have direct access to pediatricians and gynaecologists without referral?

Yes, in Italy that is the norm and it sounds silly that you think it’s a weird expectation. That’s probably one of the reasons why the British infant mortality rate is 50% higher than the Italian.

> Fair enough.... so, that itch you get occasionally, or that nagging ache... are you going to visit the neurologist, or the rheumatologist, or the radiologist, or....?

I’m not a hypochondriac, so I don’t go to random doctors on a weekly basis. But given the taxes I pay to fund it, I’m expecting a Western European healthcare system and not this thing that would be below par in a middle-income country.

> I've literally never heard a GP mention budgets to me as a patient. Or are you referring to GP representation in the media?

Sure, that’s what my GP said, she didn’t have a budget for that. I’ve left out the part where I said that it didn’t matter because I had a private insurance and the NHS wouldn’t have to pay for my treatment. At that point she totally lost it and started yelling that the Tories are privatising the NHS and insurance companies are their accomplices or some other crazy thing like that.

> You say that GPs will knowingly experiment on their patients to save money. Are you sure that's what's happening?

Rather than referring my partner to a gynaecologist, the GP kept making up pseudorandom diagnoses for roughly 3 month, until my girlfriend gave up on him and decided to go to a private doctor (it’s not the same person that hates private insurances and at the time I didn’t have an insurance). The private gynaecologist identified the issue in 20’ and prescribed a 3 day treatment that fixed the problem. 3 months of randomness vs 20’ of professionalism.

So, to answer your question, I was being sarcastic: the GP wasn’t experimenting, in the sense that he knew what he was doing, he was just making stuff up to not spend his budget on referrals.

> Is that actually the reason they gave? Or something you've inferred? Did they, perhaps, want to provide your girlfriend with the service she requested, using what they had at their disposal?

My girlfriend had been using a pill for years, after testing a few under the supervision of a gynaecologist (again, that’s the norm in Italy, GPs don’t come up with birth control pill suggestions). Then she moved to the UK and the British GP told her that she should change the pill, because it was too expensive. My girlfriend said she was fine paying for a more expensive pill (in Italy you have to pay for it). Then the doctor went on explaining that the NHS would have to pay for it and that she should use too much public money. I eventually had to intervene, because my partner’s assertiveness is below 0 and the doctor was putting her health at risk to save 5£ per month.

Your GP "yelled" at you and "made up" random diagnoses to save a few £ per month, deliberately putting your partner's health at risk?

Any GP doing what you say would lose their job and not be allowed to practice again.

My understanding is that you (and maybe your partner) had specific expectations about who you would see and what they would do for you. Your expectations were not met, and you've interpreted this very negatively through some basic misunderstandings of how the NHS works.

> My girlfriend said she was fine paying for a more expensive pill (in Italy you have to pay for it). Then the doctor went on explaining that the NHS would have to pay for it

Despite the fact that you clearly dislike this, it is indeed true. You can't ask an NHS GP to prescribe a specific medication and offer to pay for it yourself. The NHS buys meds and issues them through prescriptions. That's pretty much it.

Just to be clear: I fully accept that not all experiences with GPs are perfect (and neither are all experiences with consultants).

If you want to tell a doctor what you want and have them give it to you, stick to private care. Your opinion of NHS GPs is clearly very low, and unfortunately seems misinformed.

> but it proved impossible to get tested for any other STD.

You've asked for direct access to specialists, and in England you do have direct access to sexual health clinics where you don't need to be referred by GP, you don't even need to tell your GP, and where they'll test for just about everything.

Your mother was lucky. It would be interesting to see if this impacts the health seeking behaviour of individuals. It is practically outsourcing the healthcare to a third party agency that has the potential to slip up. In some cases, it does (as the OP). American cancer rates have different etiologies and is not apples to oranges comparison.

Among the Europeans I know living in the UK, the NHS (the system - not the excellent staff) is a laughing stock. There is a better way, but I worry that the public of the UK are so militantly resistant to any change to the NHS’ structure that it’ll never be changed.

The UK spends far less per head on Health than other European countries. It is incredibly cost effective.

The first step would be spending as much as other countries do before judging if a different structure would be better.

I agree, it should be funded more, but I think there are definitely problems which are inherent to the NHS’ current structure. A lot of mismanagement, beyond the point where I can just blame it on underfunding.

No, the UK spend on the NHS slightly more than the EU14 average. The NHS is more expensive than the Italian and Spanish healthcare systems, while being significantly worse.

Among Italian expats we wonder how is it possible that a paracetamol dispenser with some ni-no-ni-no cars is so expensive.

Have you taken into account account for private expenditure? There are far more out of pocket expenses in Italy for patients than there are in the UK.

Sad, but true. NHS is the new religion of the U.K. Remember the mindless banging of pots and pans in the street for them? When quite a lot of the hospitals were empty? I can vouch for this because I worked in the biggest hospital in Brum.

Anyway, what am I saying, of course socialist works, were just not doing it right! All hail the NHS!

I found the "pots and pans" thing back in 2020 to be eery.

It was once said "Prussia was not a country with an army, but an army with a country"; the UK is not a country with a health service, but a health service with a country.

My better-half works in a hospital where the concrete roof is 20y past designed life and is now actively failing to the point of being supported by hundreds acrow props.

Tory government says it's still deciding if it'll be one of the arbitrary eight hospital projects they'll fund.

They made nursing a degree course, put tuition up to £9kpa, and removed both the nursing bursary and final-year medicine tuition grant... and wondered where all the new doctors and nurses went.

You're not right. It's not foolish to want to protect the NHS, it's foolish to trust a Conservative to fund it adequately. And yes, some of these problems were caused by poor policy of their Labour predecessors.

> nobody in power is going to reform it

This kind of thing is only ever said by people who've got no idea how the NS works.

Just today Javid announced his intention for a new, major, change to the way that primary care will work.

There's quite a lot to mention here.

There is not a "UK NHS". There are 4 NHSs in the UK, one each for Scotland, Northern Ireland, Wales, and England. They really are different, with different laws and staff and government departments.

When you're googling for NHS England policy you want to avoid nhs.uk, which is the patient facing stuff, and use inurl:england.nhs.uk When I do that and search for "Breast cancer screening" I get this page: https://www.england.nhs.uk/cancer/harnessing-innovation-in-c...

"Our series of annual Innovation Open Call competitions is an important way in which the NHS Cancer Programme identifies and supports the most promising innovations that will help us to deliver on our ambitions. The successful innovations will be tested and evaluated in real-world settings, so that those that will make the biggest difference can be rapidly implemented across the NHS. In this video, Professor Richard Gilbertson, Chair of the Innovation Expert Advisory Group, gives an overview of the competition and some of the exciting innovations."

> disparate databases pushed a link between the universal ID (NHS number)

Little bit optimistic there. NHS Numbers are a mess.

Just to say, this is pretty spot on. Lots of messy data, many different sources of messy data. It's significantly more complex than you'd hope.

Thanks. I was expecting a less UK familiar audience, I've over simplified the problem semi-deliberately, largely to avoid falling into discussing the general mess that is NHS IT. :) My first job probably 20 years ago now was on a Radiology Information System so while probably out of date (though that RIS is still deployed widely so maybe not) I've got some idea of the types of issues, including around NHS numbers. I guess I'm only aiming for that extra layer of Swiss cheese in whatever initial subset of the plethora of systems it could cover.

I've also tried taking systems through NHS innovation programmes in more recent years. That's been a whole other level beyond what I experienced with the RIS, all the same issues plus fighting for funding from people who told me they wanted off the shelf and not anything new (or, it seemed, innovative). And I don't need funding so I'm loathe to go that route but I can't dismiss it, it's an option.

Not sure how much help it is, but NHS Digital is mainly for England, and perhaps Wales, a lot of it's work isn't for Scotland. NHS Scotland's equivalent is the [NES Digital Service](https://nds.nhs.scot/about/).

Good luck

> It strikes me that if all, or initially even a subset of, the disparate databases pushed a link between the universal ID

If it were this simple, one would think they would have done it already. One of the issues the NHS have is that they have so many disparate systems that don't know how to talk to each other. They're almost certainly aware of this and examining ways to unify them - after all, finding better technological solutions is why NHS Digital exists.

The NHS app on my phone provides my basic medical records and covid records already, at a touch of a button.

Maybe what they need to do is scrap the existing disparate cancer screening databases and create a new centralised one. Like they did for covid.

I assume it’s mostly a funding/business priority issue that’s stopping them. Or maybe privacy/infighting of data ownership within the various NHS entities.

I worked in NHS IT for a number of years. I've been in other industries for a while, but I doubt things have changed that much. It's not a funding or business priority issue per se. Tho having said that the NHS is focused on providing the best care to the most people. That does mean that some people fall through the cracks.

Anyway, the data is significantly more fragmented than you can ever imagine. GPs are technically (it's very odd) private companies. They can have a reasonable amount of leeway to do things as they see fit. Which means just at primary care level, there's a massive data quality issue. Then you get on to secondary care (hospitals etc) and there's just as much separation between the different trusts/health boards etc. Then each country, have their own NHS, Scotland, NI, Wales and England.

So it seems like an easy fix, but the reality is miles more complex than you might initially think.

> Maybe what they need to do is scrap the existing disparate cancer screening databases and create a new centralised one. Like they did for covid.

The hard part is probably migrating all the existing data. It'smuch easier if you can start from blank, like for covid.

> If it were this simple, one would think they would have done it already.

IME of NHS IT, simple technically is not necessarily simple politically. I'm more than open to the idea that I'm missing something, I definitely will be even some things aren't insurmountable, but until someone can tell me explicitly what that blocking issue is I'm reluctant to make that assumption.

I've got about 20 similar anecdotes from personal experience I'm afraid.

The NHS spent over £30bn in today's money on a largely undelivered and undeployed IT system that they canned.

It is institutionally incapable of efficiency or common sense ideas like this. They are immune to it. 1.3 million direct employees and no one with agency. And yes, it is frustrating. You can see it at the micro levels as a user too. It is bizarre and costly.

If you fancy a box ticking non job that's not helping anyone achieve anything they have you covered in the thousands though.

On top of that laws have actually been changed to ensure small or single person contractors who kept things running from working for the NHS. So now they are wholly dependant on large consulting firms.

Yeah, I was working on a Radiology Information System under NPfIT. We ended up putting in configuration options for everything we were asked to change, despite being explicitly told not to make it configurable and ended up just changing flags back and forth on a weekly basis as they changed their minds between the same options.

Must have driven some people mad.

> no one with agency.

That's killer isn't it, absolutely killer.

This is very interesting (disclaimer: I work for the NHS, although this isn't within the remit of my role). Many useful comments in the thread, so I'll add just one thing. In NHS England there are national programmes for screening that set the guidelines and, up to a point, the process under which screening for a specific condition or set of conditions happens. Some of these are under review, and looking at how they work might be a good starting point for a discussion of something like this: https://www.england.nhs.uk/cancer/early-diagnosis/screening-....

In addition to the other suggestions, you could also pitch and prototype this at the NHS Hack Day.

https://nhshackday.com/

There is no formal route to production, but you might meet senior people who could help.

This is an interesting issue. First, I hope your mum and family are getting acceptable care and support, and that she gets the outcome she wants from it.

I know what it's like to see or experience something at the patient end of things and feel the urge to do something about it. It's difficult to find obvious ways forward with that in the NHS system, and the common ways for patients to raise complex and niche issues - MPs or the NHS' public-facing channels - can produce dispiriting responses.

I get the impression you're in England, so my assumptions here are about NHS England. There's been a push (and requirement) in recent years for Patient and Public Voice (PPV) - closer public involvement in the design, production and governance of NHS services - so there should be increasing opportunities for the public to act on their experiences. In practice, there doesn't seem to be much of an open invitation to public involvement in digital at the national level yet.

As you didn't mention it, you might be interested to know that, as well as the breast screening report you mentioned, there has also been a recent review of adults screening services [1]. That's led to NHSX's Digital Transformation of Screening programme [2], with objectives directly relevant to your issue. There's a contact email address that might reach someone more likely to grok it and/or explain the programme's routes for PPV input.

There's also some information about the current digital screening services, including named heads and leads [3]. Maybe a direct approach to one or some of them about how you can influence the issue (and highlight the shortcomings of the approaches you've tried)?

[1] https://www.england.nhs.uk/wp-content/uploads/2019/02/report...

[2] https://www.nhsx.nhs.uk/key-tools-and-info/digital-transform...

[3] https://digital.nhs.uk/about-nhs-digital/our-organisation/ou...

Thank you, I’d certainly missed [3], I’ll try some of those.

Is there something you can build that takes an NHS ID and does all the checks on the disparate systems automatically for said person? That might be the quickest way to making a difference here, and if it gets traction would attract the attention of people at NHS.

Technically, I'm sure the answer is yes. Access to those systems is a difficulty for an outsider like me.

I am sorry for the experience, I hope she beats it quickly.

I feel like the secret agenda in the UK is making NHS so bad, people would beg to have some sort of health service, costs a fortune like US but at least cuts the pain.

So, although I understand where you are coming from and the naive belief that they want to improve the service, I think for the politicians it’s not the case. They also don’t have courage to come out and say we want to make NHS private, as it would cost quite a loads of votes.

This is how I am able to explain the service quality, stupid phone calla you need to make and totally inefficient management.

Hi there, I haven't read the whole thread, so apologies if this has already been mentioned, but NHS England have an innovations service for ideas like this - you can access it at https://www.england.nhs.uk/aac/ .

Thanks, I've tried emailing them. Quite a few NHS inboxes seem to be black holes.

I wish there was basic administration for all people living in a city and connect that address to NHS correspondence address. So that the city council and NHS can send me letters without me worrying to go to all governmental institutions to change my address

If you are looking into this, you should be aware of the Spine https://digital.nhs.uk/services/spine - the system which should coordinate this stuff

Looks like the Platforms team at NHS Digital own it? https://digital.nhs.uk/blog/tech-talk/2020/5-key-themes-for-...

I thought NHS Digital had the remit to build services like this ?

I think they do (at least in England). I've just been ineffective at convincing them of that.

This sounds like the end goal of a combination of items already in development within NHSD I'm working within NHSD at the moment within Product Development and will pass your story and idea on if you don't mind. Below are just some of my thoguhts though and links to items that are currently avialble or being worked on that could eventually help with the problems you outlined.

NRL aim to create pointers and provide access through to data in disperate data stores. Currently supports document stores but plan is to extend this for other data types. https://digital.nhs.uk/services/national-record-locator

NBS The national booking service looks to have been rolled up for COVID but the intent is having a place to book and manage appointments for procedures you are recomended to have (intially focused on vacinations). https://digital.nhs.uk/coronavirus/vaccinations/booking-syst...

Then you have BARS that is focused on standardising disperate booking formats so that they could all then be usefully referenced using NRL possibly then linked to NBS. https://digital.nhs.uk/services/booking-and-referral-standar...

I'm not directly involved but is some details of the breast screening applications here, I suspect the above would need to be connected up with this to all work together. https://digital.nhs.uk/services/screening-services/breast-sc...

I know the call and recall service is currently being replaced for cervical screening with CSMS (Cervical Screening Management system) so I would suspect that if its not already on the todo list that a replacement for breast screening would line up based on the success of that. Much of the aims of this service are to solve some of the problems that you mention but for cervical screening. https://digital.nhs.uk/services/screening-services/national-...

All of the above links will have some form of contact details also if you would like to contact the various teams.

Thanks, appreciate it, I'll read through these. I'm pretty convinced this would happen eventually anyway, but then again, it hasn't yet. More than happy for you to pass this on to anyone, and for anyone to come back to me - I'm going to keep knocking on doors anyway until I see it happening!