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“Fears over web health revolution”

The BBC website has a report claiming that there are concerns about the way people are using the Internet to obtain medical advice and treatments.  It is interesting stuff and, as someone who has had excellent, very good, very bad and extremely frustrating experiences at the hands of the NHS I’m in a position to see both sides of the argument.

Get yourself a cup of tea, this is going to be a long post.

It’s a fact that the Internet has given people access to more information and opinion in all matters including health and medicine.  Now there are lists of medications and their potential side effects when before the advent of the web if you didn’t have access to specialist books all you had to go on was the medication instruction leaflet and any advice your GP might have given you.

Now you can search for that medication and see people’s opinions about and experiences with it.  Many support groups exist for people undergoing a treatment or living with a particular condition.  Discussions abound about which treatments work best, which consultants are good, better and best (or not as the case may be) and offering information so that a person can go to the GP armed with information.

What we all need to remember is that GP means General Practitioner – if someone has something outside of that GP’s experience then there is the potential to hit problems.  Had my mother followed the GP’s advice of “It’s just a panic attack” (it wasn’t anything like a panic attack) in 2000 then I would almost certainly have died within a week.  Is it any wonder that my family and I aren’t the most trusting of GPs now?  We prefer to have information and a discussion about the best way forward, which should surely be the right thing to do instead of meekly taking a prescription.

There are GPs out there who would rather dose patients up with painkillers rather than investigate the problem that is causing them severe pain and stopping them doing their jobs and having a decent quality of life.  That’s not the right way to deal with things.  Pain happens for a reason and that reason should be investigated.

Popping painkillers or other medication like Smarties isn’t good for the person.

I’m now in reasonable touch with the way my body works.  I know which things set me off and cause trouble.  I know which parts don’t work optimally and how to care for them.  I know how they feel and the signs they give when something’s not quite right.  I know those signs well so I also know when something definitely isn’t right.

It would be nice if everyone was able to read the signs their bodies give them.  But not everyone has the same medical history.  This is where things start to get cloudy.  Partly through advertising aimed at getting people to think “that headache I had the other day might be the start of something nastier” instead of “OK, I need to knock off the lager” and partly through the promotion of BMI as an accurate measure of health.  Which it isn’t.  Information overload is a logical consequence of living in the information age.

The recent documentary about Sir Terry Pratchett is a case in point.  One of England’s finest authors has Alzheimer’s Disease and the documentary was both educational and deeply moving.  We sincerely wish him well (my fair lady is a great fan of his work) and hope treatments can keep the condition from advancing while a cure is searched for.

Symptoms include forgetfulness, getting your words wrong and co-ordination problems. Now how many of us have days where one or more of those things happens to us?  Forgetting my meds, calling the catflap “cathole” because I couldn’t get the word “catflap” out and dropping the phone when a potential client calls me.  Does this mean I’ve got Alzheimer’s?

Adverts abound offering healthchecks and scanning services.  If you’re over 40, over 50 or over 55 then you need an MOT.  Come and get scanned and see if anything’s wrong with you.  We can’t fix anything but we can tell you (and show you) if there’s something wrong.

I can see the appeal of these services.  Sometimes getting an appointment with the GP can be a lottery.  Some GP surgeries seem to be guarded by the human incarnations of Cerberus and it’s a Herculean labour just to get an appointment in the next couple of days.  I should point out here that my GP surgery has been efficient, polite and helpful since I joined them.

Then getting referred can be another lottery, often with long waiting times.  There seems to be a difference in some parts of the country when compared to others.  Getting a steroid jab for my elbow is a case in point.  Back in the Midlands I could get the jab done with an appointment at the local surgery.  Here I’ve had to get referred to a hospital and wait three weeks for an appointment to come through.  Now both elbows are flaring up and may need jabs.  I doubt the hospital will do both elbows.  We will see on Thursday.

I had to go to Poland to get a brain scan, such was the waiting list here.  And although my Polish was as bad as the lady neurologist’s English I learned a hell of a lot about my brain, the scan and the results.  So sometimes the process of getting diagnosed and treated can be a pain.  Is it any wonder then, that people are tempted by adverts for services which claim to offer a compassionate diagnosis experience?

The Nuffield Council On Bioethics has launched a consultation with a remit

on the ethical issues raised by online healthcare, telemedicine and commercial medical profiling technologies such as DNA testing and body imaging. These technologies and services are increasingly focused on the individual, and often mean that the GP is no longer involved in health care.

If I go to see my GP (and I rarely, if ever saw the same GP three times in a row or at all) surely I am right to expect that their attention is focused on me as an individual?  This suggests otherwise and I find that objectionable.  From an IT perspective there are issues surrounding data protection and use of that data and those issues need to be addressed clearly.

While the BBC report mentions

The council said there was a whole host of questions that needed to be addressed about a range of services.

For example, it said the information provided by DNA profiling or body imaging using MRI and CT scans could be misleading and difficult to interpret.

Professor Christopher Hood, an Oxford University expert who is heading the consultation, said this could sometimes have a knock-on effect on the NHS with people coming to it with unnecessary medical worries.

So on one hand people who don’t like going to see their GP (if they ever see the same one more than twice in a row) are being encouraged to quit doing the macho thing and go when they think something is wrong yet Professor Hood is saying he doesn’t want GPs being overrun with so-called “unnecessary medical worries”.

Surely prevention is better than cure?  Surely from the data gathered about reasons for visiting the GP the NHS can build an education programme?

Professor Hood said: “Cutting out the GP may sometimes be a good thing, providing us with convenience, privacy and control over our health.

“But there is not much regulation of these new services and we may be getting information that causes more harm than good.”

People do need assuring that the medical advice they are receiving comes from a recognised and qualified source.  Regulation should not be used to protect vested interests or push political agendas.

But the consultation also said the advance in technology could offer opportunities to the NHS.

One of the examples given was the use of telemedicine in rural areas to allow GPs and patients to use TV link-ups for consultations.

Nuffield director Hugh Whittal said: “There is a range of benefits to be had, but it is only right some questions are asked about risks, the quality of information, equity of access and the impact on the NHS.”

I’ve already written how the NHS “Choose & Book” website fails.  It has never offered me a choice other than “take this appointment because that’s all there is”.  These new services are coming into existence because it is felt there is a demand for them.  Questions should be asked why these new services are coming into being.  Perception is reality and all that.

Professor Steve Field, president of the Royal College of GPs, said: “I think this just reinforces the need for patients to have a GP.

“Doctors should be empowering patients and help them understand and navigate their way through what is being offered.”

But he also warned patients to be wary of some of the services being offered by private firms.

Yes, doctors should be empowering patients to make informed decisions.  But how many really are?  How many are like the GP I left in disgust because he sneered at me when I told him I monitor my own blood pressure?  How many people actually have a good relationship with one GP they feel they can trust?  Again, perception is reality.

I’ll say this again to Professor Steve Field:

“Had my mother followed the GP’s advice of “It’s just a panic attack” (it wasn’t anything like a panic attack) in 2000 then I would almost certainly have died within a week.  Is it any wonder that my family and I aren’t the most trusting of GPs now?”

The adage “a little knowledge is a dangerous thing” is certainly true from my IT experience and may be true from experiences in other sectors.  If people want to know about something they will look for authoritative sources and others with similar problems to inform themselves.  The days of the GP being the sole source of advice are going, and that is something that (in my opinion) has been hastened by narrow minded, opinionated GPs offering little constructive help and support to people.  I will not lament their eventual demise.  GPs now need to offer the same service as a long retired GP used to give to me and his other patients: he would listen, ask questions, consider, look up and then reach a conclusion with the patient.  Every patient deserves that rather than “Here, take these painkillers and get lost”.

The NHS emergency provision is excellent.  That I am here now is testimony to that.  There are other areas the NHS doesn’t do so well in.  I could write several long posts about that.  The NHS should look to improve these other areas; where private services emerge it may well be because there is a deficiency the NHS needs to address.

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