Tag Archives: NHS

Your NHS Medical Records – and the automatic opt-in

You should by now have received a leaflet through the post (click here)  about how the government intends to share YOUR personal health data with a variety of ‘approved’ (but unspecified) organisations and ‘researchers’. The leaflet came without an envelope and  will probably  have arrived with a lot of other leaflets for pizza deliveries and cheap sofas and you will probably have thrown it away unread.

 THIS IS A SERIOUS MISTAKE.

Because, as the leaflet tells you, “If you are happy for your information to be shared “(or if you have thrown away the leaflet unread) “you do not need to do anything. There is no form to fill in and nothing to sign.” In other words – you have opted into having your full medical information shared with whoever the government decides appropriate. Or indeed, anyone who breaks into the HSCIC secure system. 

Now the first thing that worries me, is why is there no form to fill in and nothing to sign?  The government are leafleting every household in the country,and  the form could easily have contained a simple opt-in slip that you could fill in and take to your GP.  After all, almost everything in this country that’s not compulsory requires an opt in – from electoral registration, to becoming an organ donor. If the government wants to start a trend for opting-out rather than opting-in  why don’t we start with one or both of these?  

The answer is, of course, that  they really want your information and so they are relying on your apathy as much as a mobile phone provider or an energy company would be.

The second problem I have is are we identifiable through this data?   While the leaflet is a little vague, when you check at the parent NHS website they are linking “your date of birth, full postcode, NHS number, and gender.. to link your records in a secure system”.

Date of birth, full postcode, NHS number and gender? Bingo! You could identify me that way, no problem. ( And ‘secure system’? Perlease. Does the name Snowden still mean nothing?)

Don’t get me wrong,  theoretically I think NHS data sharing is a good idea. My family suffers from a vile hereditary condition that has been passed down through four or five generations and is set to continue for the forseeable future Nothing would please me – and people like me – more than if a responsible state used our medical data for responsible research to ameliorate our  current situation and make life better for future generations. However my third concern is what will be done with our data?

We are told  it will be made available to others –  such as those planning NHS services and ‘approved researchers’.

  • Is this a full list? What are the criteria for approving researchers? (Are they, for example, British researchers working within the NHS? Are they health researchers? Will they be using the research for profit – and will the NHS benefit, or  be disadvantaged by this?)
  • What if our data were sold to – or indeed, fell into the hands of –  researchers from an aggressive multinational pharmaceutical company, who patented the findings?
  • What if elements of the media saw this as the next thing after telephone hacking and hacked into such a database to establish  – and publish – things that we  would prefer to be kept private?
  • Or insurance companies found ways to plug into detailed medical histories?
  • Indeed, what if organisations started targeting us with health-specific ads?

There are a lot of questions about the use and sale of our personal medical data that are not currently being answered. I am a little worried that the government might not even have thought of some of them.

NHS data sharing? I share mine with my excellent GP practice, with various hospitals and with various expert medical personnel.  But until I get assurance as to its future use on points such as those above,  I will not be sharing it with the state!

Negligence, amnesia and epilepsy: remembering Labour’s NHS truthfully

Lets start by saying I love, respect and am deeply grateful to the NHS.

I’ve watched one partner progress from medical student to senior consultant, other friends journey to many different medical destinations – and all of us ending up as NHS patients.  I’ve had three children (one by crash caesarean), and an arm reconstructed with 32 pieces of metal during the Winter of Discontent. I’ve supported most of my family in hospital one time or another. When my brother died of cancer, I’ve devoted time  to replacing the countless pints of blood he needed (currently 130plus donations, and rising).

So, yes, like 95% of the people in the UK I love, support and am deeply grateful to the NHS.

But this doesn’t mean I buy into the current myth being foisted by those who know better onto those who don’t. That there was a glorious golden age of unprivatised efficiency in the NHS, brutally drawn to a close by the last election. That the only people to be trusted to run the NHS are the Labour party. Oh no.

A good friend – a retired and leftward leaning hospital consultant -said to me last week,”there hasn’t been any time in the last 20 years when I haven’t been very depressed by where the NHS is heading”. He has a point.

These days the opposition, with consummate hypocrisy, bangs on about the prospective horrors of Tory privatisation. Do they think we’ve forgotten? Lets not talk about all the services that WERE privatised under the last Labour government (GP Out of Hours Services, and Sexual Health are two ones that come immediately to mind). Lets not talk about buildings in hock to PFI and how much they are used/how long they will take to pay back. Lets talk instead about the huge gap between rhetoric and reality that underpinned so much of this untruth.

In 2007, during a period of supposed national wealth, the All Party Parliamentary Group on Epilepsy published Wasted Money Wasted Lives: The human and economic cost of epilepsy in England.

The statistics they quoted were – and remain – shocking:

• 990 epilepsy related deaths annually (365 being children/young people). This does not include eg drowning and RTAs
400 avoidable deaths per year
• 69,000 people living with unnecessary seizures
• 74,000 people taking drugs they do not need
• £189 million needlessly spent supporting this tragic state of affairs each year.

Most shocking of all is that these statistics have not altered since this time. It as if that report never existed. So what did it say? (italics mine):

“ During the course of this Inquiry, it has become clear that the National Health Service (NHS) is failing people with epilepsy and that a much improved service can be delivered at the same time as making significant cost saving.  The All Party Parliamentary Group on Epilepsy therefore calls upon the [ then, Labour] Government to recognise the benefits of change, accept the political, administrative and ethical duty to implement these changes, and to take positive action for the benefit of both the patient and the taxpayer.
Government has devolved much decision making to local Primary Care Trusts. It was not the purpose of this Inquiry to examine that policy. It does, however, sometimes give rise to a gap between stated Government policy and actual delivery. It can also lead to a postcode lottery, abhorrent to Government, where patients in one part of the country receive a significantly worse service than elsewhere. Again, this will be clearly shown to exist in the case of epilepsy.
Government must take care to avoid the criticism that admirable policy developments on paper without targets for implementation or powers to roll out the policy are seen as no more than Government “wish-lists”, and of little use to patients facing critical service failures on the ground.

This report concluded

“ the numbers experiencing seizures unnecessarily and the numbers taking anti-epileptic drugs for which they have no need is a national scandal… It is about time that people with epilepsy received for the first time ever a health service that meets their needs, at least to the standard available to patients with other conditions. ”

Four years on, it is as if these words had never been written. It shocks me to the core that our current Labour opposition use every opportunity to imply that the NHS was safe till it left their hands and yet the ‘national scandal’ to which Health Secretary Alan Johnson was alerted and Andy Burnham inherited was as nothing to them. This was heralded as a time of economic prosperity – a time when government increased GP salaries to double their French equivalents’ while cutting their responsibilities. Clearly the notion – of decreasing cost while increasing the standard of care at least to the standard available to patients with other conditions – was unimportant to health secretary Alan Johnson, and his successor Andy Burnham.

Forgive me if I write about this bitterly. I feel very bitter. In the same year in which this report was published my adolescent child faced damage and death over and over again because she lived in a county with no specialist provision and no expertise or interest in managing difficult epilepsy. And no steer from a disengaged and totally uninterested central government to provide it. Epilepsy isn’t sexy, is it, Mr Johnson, Mr Burnham, you Labour amnesiacs and apologists one and all? And its not insurable either.

When I talk about facing damage and death this did not mean she fell over occasionally.

During 2007 she had 200 major (damaging) seizures, and innumerable minor seizures. On 90 occasions these developed into status epilepticus (results in brain damage/fatality if not stopped). Over 2007 she was taking 9 separate drugs in various suck-it-and-see combinations (many of them with toxic side effects) in an attempt to control her epilepsy or rescue her from status epilepticus.

(Can I repeat a sentence from the report ‘the numbers experiencing seizures unnecessarily and the numbers taking anti-epileptic drugs for which they have no need is a national scandal‘ . Quite).

Over 2007 she spent 45 whole days as emergency admission in 4 separate hospitals in 4 separate parts of the country. 67 further days were spent in a state of confusion so extreme she couldn’t string two words together.

Imagine what an effect this had on her life! On her social life! On her education! On her self esteem! On the life of me, her sole carer 24/7. On the life of her siblings.
And 2007 was a doozie in comparison with the horrors of 2008.
I cannot describe what it feels like to cope hourly, daily, monthly, yearly with this level of anxiety, difficulty and stress and then discover that those running the NHS – that was YOU Alan Johnson and YOU Andy Burnham knew about it, and just couldn’t be bothered to act.

So when I now hear you and your apologists complacently posing as the protectors of the NHS and those who use it, I have to remind you that you cannot expect to win the hearts or minds of those half million you failed. Or the families you wracked, and the education and careers you ruined in the process.

Alan Johnson, Andy Burnham, 他们的良心被狗吃了! (Though I don’t suppose you’ll think of checking out the meaning of this , either)