Uncharted Territory

October 28, 2009

NHS Nutters

Filed under: Healthcare, NHS, Politics, UK — Tim Joslin @ 10:48 pm

The British electorate would be well advised come next June to forget about traditional political affiliations and whether or not we “need a change” and choose their next Government on the basis of the apparent sanity of its leadership.

Unfortunately, the British electorate is unlikely to take my advice and will instead elect a party which admittedly does boast some front-bench talent. But the wit of William Hague and wisdom of Ken Clarke will have to play second-fiddle to the Etonesque eccentricity of Messrs Cameron and Osborne. The key word in their bizarre philosophy is “localisation”.

Here’s a headline: “Tories vow to save money by scrapping national NHS database“. Having spent billions so far, this would seem a remarkably drastic step. The Tories are responding mainly to concerns about patient confidentiality, it seems. Instead of a centralised database, “Stephen O’Brien, a shadow health minister, said that the Tories would instead decentralise IT provision in the NHS, allowing trusts to buy their computer systems provided that they were compatible with others in the health service.”

Now, it seems to me that one reason the NHS IT project has overrun is because it is so monolithic. It would have been much less risky in many ways to set standards so that disparate systems could communicate, and implement them locally. But I see why a “key part of the programme involves the clinical records for every patient being stored on a ‘personal spine information service’.” If you have local systems, the data exchange issues are much greater.

One of the major benefits of computerisation is that patients’ records can be called up wherever they happen to be. And there’s also a huge benefit of computerisation in that the data is so much easier to “mine”. I read today of a careful study on migraine-sufferers. “Link between migraine and stroke” said the Independent. Worrying, so I read further:

“Young women who suffer from migraines with visual disturbances and who smoke and take the contraceptive pill are at a higher risk of stroke, research suggests.

Migraine doubles the chances of a stroke if accompanied by aura (temporary visual or sensory disturbances) according to the research, published online in the British Medical Journal.

Other factors that heighten the chances of a stroke include being younger than 45, a smoker and using contraceptive pills containing the hormone oestrogen.

Researchers led by a team from Harvard Medical School said there was no evidence of an increased risk of stroke among people having migraine without aura.

About one in five people suffer from migraines, with up to a third having an aura. The authors pooled the results of nine previous studies on the link between migraine and stroke to come up with the findings. “

Maybe the drugs prescribed for the migraines have caused the strokes – especially as my impression is that not so many years ago you needed the aura to call it a migraine and qualify for the drugs. Who knows? Hopefully the medical sleuths are on the case.

Anyway, my point is that with a comprehensive national database – however it’s implemented – you wouldn’t need elite medical professionals to determine correlations of this kind. School-level statistics skills would be sufficient. The big pay-off from an NHS database is this sort of data and the resultant medical progress. You want to work the database. That, I suspect, is why a centralised design was chosen. (And I haven’t even mentioned Shipman – detecting similar individuals would surely be worth the cost of a few computers).

How do the Tories deal with this issue?, I wonder. This is what their report has to say (apologies on their behalf that parts of the key passage are barely comprehensible gibberish):

“In order for patients to reap the benefits of information technology in relation to their healthcare, there must be a change in the way information technology is supported: the Executive must not regard health informatics [they’re using this grandiose term confusingly – to me at least – to mean all NHS IT services, whereas I’d use it specifically to refer to knowledge engineering] as a tool to extract data [as if it’s being stolen – isn’t language great?] from the National Health Service but as a way of organising health and social care information around the needs of the patient [as if sharing data across the system isn’t in patients’ interests]. Systems must be able to deliver clear benefits to the care of the patient and the work of the clinician in delivering this care. They must not be seen by clinical staff as solely [sic – really, would they?] systems for data collection. The dataset mentality – where the bulk of data collected bears not [sic, I presume they mean “no”] relevance to patient care – should be abandoned. Clinical systems should be built to focus on the patient, not the disease, procedure, specialty or service providing care. These requirements should be met by developing appropriate views on the patient-focused record according to the context in which the patient is seen.”

Actually, it’s not just the words I’ve highlighted which are gibberish, the whole thrust of this paragraph is completely barmy. Call the men in white coats. Several of the individual sentences make little sense, but I can find no way of avoiding the conclusion that the Tories want to throw out many of the enormous benefits of computerisation. Cameron apparently elaborated the full mad starey-eyed “vision” at the Tory Party conference:

“Now I want you to imagine how we’d have gone about [updating NHS computers], if we’d had the chance.

We would have said: today, you don’t need a massive central computer to do this.

People can store their health records securely online, they can show them to whichever doctor they want. [I love this bit – not if you’re in a coma, you can’t].

They’re in control, not the state. [Puerile, absolutely puerile].

And when they’re in control of their own health records, they’re more interested in their health, so they might start living more healthily, saving the NHS money. [Yeah, well, now I know the doctors are going to wait for me to come round so I can log them on to my medical records, I’m certainly going to do everything I can to avoid entering hospital horizontally].

But best of all, in this age of austerity [oh, please], a web-based version of the government’s bureaucratic scheme services like Google Health or Microsoft Health Vault cost virtually nothing to run. [Probably ‘cos they’re crap as Gerald Ratner would have said].

So this is where some really big savings could be made.”

Well, exactly. I can save the tube fare if I walk 8 miles to central London.

David Cameron, of course, is a direct descendant of Thatcher – as if through the intervention of some kind of incubus – and for her “there was no such thing as society”. This is now dressed up as a philosophy of “localisation” – the heading in their report is “8 action points to bring about localisation in NHS IT” – who could possibly be against that? Well, I am, if it means that I don’t benefit from the medical experience of others, and the outcome of any treatment I have is not used for the common good. Hey, why not go the whole hog and give up on the blood transfusion service? We could all have our own private blood-banks.

My experience is that the NHS is already far too localised. GP surgeries are a law unto themselves. Take registering. My local GP, first of all, only accepts registrations up to 4pm, despite being open until 5; they require two proofs of address + photo-id; and, worst, refuse to let you take a form to fill out and bring back when you get there and find you don’t have the right id, so you find when you eventually do come to fill it out that you don’t have all the information required (NHS number and former GP surgery address). Plus, they’re just plain rude with it. Our taxes are paying for an army of these receptionists, who have no medical training whatsoever. This is where we should find our first cost-savings when we finally get our records out of the 1940s, off paper and onto magnetic media.

My recent experience of trying to register with a new doctor (having moved recently) agitated me so much that I thought I’d try to find out how I should be treated.

Well, try as I might, I could find nothing on the NHS website. Surely, I thought, GPs surgeries benefit hugely from being part of the NHS, there must somewhere be a detailed set of obligations as to how they should go about their business. In the end, I thought, I’ll drop them a line. But this is what I found:

“Since April 2009, the NHS has run a simple complaints process, which has two stages.

1. Ask your hospital or trust for a copy of its complaints procedure, which will explain how to proceed. Your first step will normally be to raise the matter (in writing or by speaking to them) with the practitioner, e.g. the nurse or doctor concerned, or with their organisation, which will have a complaints manager. This is called local resolution, and most cases are resolved at this stage.
2. If you’re still unhappy, you can refer the matter to the Parliamentary and Health Service Ombudsman, who is independent of the NHS and government. Call 0345 015 4033”

This is simply not fit for purpose. Neither of these options is appropriate.

Here’s the first paragraph of “Things to think about when you’re complaining” (from the NHS complaints page):

“If you decide to make a complaint it’s important to consider what you want to happen. Are you content with an apology, do you want action to be taken against a member of staff, or do you want a change to the system? Whatever action you’re seeking, make this clear.”

Well, someone, somewhere has realised that I might want “a change to the system”. So why has my ability to complain been “localised”? My only recourse it seems is to write to the Department of Health.

For the record, I would have thought the GP surgery registration process should follow a clear set of rules so as not to exclude those unable to attend during the day and expedite the registration of new arrivals to the area.

Otherwise, the right to choice in the NHS is somewhat limited.

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