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NHS lacks common sense whilst hiding behind Data Protection Act-Cancer Survivorship

Or should it be RARE sense NHS lacks?

Image result for cartoon tearing out hair royalty free Dealing with the NHS is enough to make one tear one’s hair out. Picture shows me on a good day.

At the entrance to my local hospital (Chelsea and Westminster) there is a new sign (£500 worth at least) saying patients will be treated with Dignity and Compassion.  Huhh – visiting a friend in a ward I find frantically ringing bells for bed pans.  Patients getting no response. This certainly isn’t compassionate.

And Dignity – it doesn’t seem many in today’s NHS know what that means. For the record, the Dictionary says it’s ‘the state of being worthy of honour or respect’.  Well, as a patient you soon realise that you often have no voice, and common sense suggestions that might save everyone’s time and money are brushed aside.  Your First name is used by everyone with whom you come into contact from Porters to Phlebotomists and Andrew Lansley’s promises re patients being consulted is so much hot air.

Last week I ended up tearing out more chunks of hair, after having tried to get MY X-Rays transferred from  CX Hospital  (Charing Cross) half a mile up the road, to a Consultant who was to see me at C&W (Chelsea and Westminster). Knowing that an X-ray I had had at CX.in March would be very helpful, and save the NHS potentially having to take another, I phoned Imaging at CX. to ask that the X-Ray be sent over to C&W.    Shock Horror. Was I a patient? Yes.

I was informed

  1.  Under Data Protection Act I couldn’t access MY own records.   If I wanted a copy I, as a disabled person, had to make a long journey across London to C.X.  There fill out a form, then wait 3 weeks for this to be processed.
  2.  “But I am seeing the Consultant in 10 days.”  I wanted to ensure the Consultant could see X-Ray – didn’t want it for myself.   No, I can’t arrange this – I have to contact Consultant (difficult) and ask her to waste her time sending in a request.  No guarantee C.X would then do anything.
  3. BUT – helpful suggestion:  the X-Ray is stored on the NHS’s £60 Billion IT system, and I was assured by CX that the Consultant would be able to access it this way.  Try to explain this doesn’t work – but meet a brick wall.  Put down phone before I burst into undignified comments on NHS IT.

What happens at appointment

I have my meeting with Consultant.  Delightful Doctor, who wastes her time (and my long awaited precious appointment) trying to get hold of X-Ray.  She can’t, but takes up her valuable time trying to get system to perform. Eventually she offers me a sop of Physio, which I accept. Although it may not be necessary for this problem, I’ve got others awaiting Physio treatment, so I can always make use of this.

I realise to get anything done this year I will have to see the Consultant privately (and will make sure it’s at the private consulting rooms so NHS doesn’t get money), and after a private consultation, whatever she decides to do, physio will come into it somewhere, so at least I will get that free.

I know NHS makes money from private treatment, but if it won’t treat me with Dignity, why should I help?  Selfish of me I know, but the service has wasted three months of my time waiting for appointment, which turned out to be a waste of time.

Meantime Consultant has to waste time requesting my X-Ray, then see me again, to decide what she needs to do.  As this is going to take at least three months to re-schedule the appointment I can probably ‘use’ it as a follow-up after private treatment,

What a non-productive, costly and frustrating way to waste money and muck up patients’ lives.  But the NHS doesn’t really worry – after all, it’s not our of their pockets, and they don’t think DIGNITY covers this aspect.  Heaven knows what it does cover, but treating us like a three-year old child who can’t even request an X-Ray be sent from one hospital to another is not treating patients with Dignity.

Follow up

This morning a form arrives from C.X for me to request a copy of my X-Ray.  I am going to fill it out to cover future requests, and see what they make of that.  It will waste their time when they eventually write back to say as a patient – I can’t do this – but I really DON’T CARE;  the way we are treated like children makes me mad.  

And wastes valuable time;  can’t the NHS see that?

I know the reply will come back quoting the Data Protection Act;  I think I am one of the few people who has actually read the Act, and if the will is there, the hospital could work it in the patients’ favour – but that is giving us too much power!

After all, we are ONLY patients.


With a Data Protection Bill on its way, arbitrary data-sharing powers available in the Digital Economy Act, etc. 
(remember a dodgy deal with the Royal Free Hospital that got Google DeepMind into a spot of trouble with the ICO and National Data Guardian when patients and their reps complained about it).
One might question “independence” when a whitewash coincidentally comes out a day after the regulator’s critique…
What’s happening next?
We don’t comment on every future project press release from Google DeepMind – its PR flacks cost many times our annual budget. But last week’s announcement that its next project will be to provide a hospital IT system for Taunton is worthy of attention; the relevant detail is at the bottom of page 2 of this document.
[N.B. This section has been shortened for this email newsletter; there’s more detail in the online version at https://medconfidential.org/news ]
NHS England certainly felt the people of Taunton were most in need of better data infrastructure – this area being one of the ‘pathfinders’ for the cancelled care.data scheme (more on its successor next time) – so starting in Somerset seems as good a place as any.

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