Monday, 4 July 2011

But patients are so THICK!


That is my scream of frustration at the NHS. I have splurged many such screams over the years, too countless to mention.

Today's farce :

I have had a really nasty chest infection. I also have osteoporosis and have managed to pop/snap/crack a rib coughing. It's the third time in 2 months that it's happened.

I also have a crohn's flare and my hospital consultant in Cambridge wants to start me on the chemo-style shots again.

Before I can start the treatment for my crohn's (priority No1), Any infection must be eliminated and there needs to be a reason I'm getting all this pain in my chest. This must be coordinated here, through my GP.

This is where "integrated care" comes in.

So, GP faithfully writes an X-Ray request that says "Chest infection, check before commencing Humira"

I know that osteoporosis fractures are very difficult to see on an X-Ray and ask the radiographer to make a note on my notes that these must be eliminated too. (Consultant specifically asked me to tell them this.)

Radiographer says it's not on the form.

I say I know, but if not checked now, I'll just be back for more radiation, which is to be avoided in someone like me as much as possible.

Radiographer pats me on the head, throws me a dog biscuit and tells me GP knows best.

I say that, no, my Consultant knows best and would it be possible to speak to someone in charge.

More conflabs.

No, it isn't possible, now be a good girl and if there's any problem the radiographer will write to the GP, who will write to my consultant who will write back to my GP........

I explain that the Consultant stressed I must explain that the Humira is very urgent and if it would just be possible to speak to someone in charge, it might save lots of time and money.....

Radiographer is blushing and awkward - we have reached an impasse!

So this is what will now happen. A Consultant radiographer will get a heap of X-Rays tonight, glance at them, see I have no chest infection and write to my GP.

Addenbrookes will ask whether there were any fractures - the radiographer will say "I wasn't asked to check to fractures....."

And all because I'm the patient and couldn't possibly know anything about my own care.

In a few more weeks, I will have to have some other kind of test to get to the bottom of the pain and meanwhile my crohn's will get worse. If it gets too much worse for too long, I will grow another blockage and end up costing the NHS tens of thousands in in-patient stays and surgery to sort it out. All because I can't be trusted to tell an X-Ray department to simply write on the X-Ray notes - "Patient also has osteoporosis and fractures should be eliminated."

Now, as you know, I'm no fan of the coalition, but they do talk an awful lot about integrated care. If they could truly improve the system so that patient's weren't treated like a slightly slow relative you'd rather ignore, then I feel I could forgive them rather more of the disasters they are brewing.

If anything else ever goes wrong with my useless body (which it does with boring frequency) it is like trying to herd treacle to get anyone to understand that the two things have to be dealt with together, not as isolated events.

Last year, I ended up with 4 abscesses on my teeth because of the Humira (immuno-suppressants). Because of my health complications, no-one would take them out at a dental surgery, so I had to wait 5 MONTHS with raging pain and infection before they could be taken out in the hospital and I could start again on the crohn's treatment. Why 5 months? Because no matter what any of my doctors said, the maxillo-facial surgeons at he hospital just could not understand that the procedure was "urgent" not "routine". The crohn's made it urgent, but without integrated care this mattered not. The whole palava gave me a massive seizure and meant that by the time the teeth were out I had another blockage guessed it.... needed expensive bowel surgery.

People like me, with serious, long term conditions are one of the largest costs to the NHS.  Acknowledging that and prioritising integration of care could save billions. It could also stop me combusting one day from sheer frustration.

Bring it on condems! If you manage this one thing at least, you will have improved long term patient care immeasurably.


  1. Anyone who has had experience of the NHS knows this feeling well! A small illustration of patient not knowing best (according to the NHS) is when I have my adhesions removed the time before last. I was in surgery for over 5 hours which meant my oxygen levels were low. My consultant said that I should stay on the oxygen mask overnight.

    At midnight the nurses came to check my blood pressure etc and said that I could take the oxygen off now. I said that I needed to have it on overnight. They said but your oxygen levels are fine and there is nothing on your file. I repeated that the consultant had specifically informed me. But as I had just come out of surgery and couldn't be trusted my oxygen was removed. So what a surprise when they checked my levels at 6 am, my oxygen levels had plummeted. I was livid. I was in pain, low oxygen and they ignored me because I was a patient and couldn't be trusted to remember what a consultant had told me well after the operation and when I was back on the ward and no longer groggy from the general anaesthetic. Grrr makes me MAD!

  2. I think I'll let you do my posting for me in future sue as as far as i can see we both have had similar experiences with the nhs
    They talk to you as if you don't know much about your own illness and when you challenge them they go are you being awkward ?

    I myself have a problem with my teeth caused by their lack of expertize in allowing a person like myself who is regularly sick to be left for days on end without cleaning my teeth which leads to permanent gum disorders so i have to go to the dentist every month as a private patient at vast cost as the nhs only allow you to go twice a year at standard cost

    What they the government talk about and actually then go on to bring about ain't going to happen anytime soon but one must live in hope i guess

  3. THANK you. I am so tired of being treated like a child by doctors.

    Maxillofacial surgeon at MRI decided that no, I couldn't possibly be effectively immune to local anaesthetics due to Ehlers-Danlos syndrome, that it was all down to my anxiety and if he had me sedated that would make the anaesthesia work.

    He insisted on local anaesthesia, and said he wouldn't do the procedure (three extractions) at all if he couldn't use it. I'd been waiting two years for treatment and didn't want to end up with septicaemia, so I let him do it.

    Naturally I felt everything, sedated though I was. Because lidocaine and novocaine don't work for more than a couple of minutes on the majority of EDS patients, and not on me at all. I tried to tell him! So now I'm trying to get referred to a surgeon who won't bully me and ignore me when I tell him something about a rare condition he's never encountered before as a patient who does know what she's frelling doing.

  4. Next you'll be getting a call from Lansley's office asking you to appear at the Tory party conference, Sue.

  5. Well its a free service, so, what do you expect? Heard of BUPA?

  6. Hang in there Sue xx
    Oh and i see the Anon is back lol

  7. Speechless!! - and not just because I have laryngitis!

    As for oxygen management - a familiar story. Sadly in the UK we are way behind other countries in our understanding of this essential area of medicine.

    By the way Sue - have you heard that there is increasing evidence to show that Hyperbaric Oxygen Therapy ( HBOT )is very useful in Crohns management and reduces need for surgery and Humira, also helps to heal those horrible cracked ribs etc

  8. Same sort of things happen to me, all the way down to the teeth, long wait causing seizures, lupus flare, hospital admission, acquired infection, near death and three month recovery...

    The worse episode of all is that I have to take large doses of potassium and hospital staff never believe me when I tell them how much I take. One time when I was an inpatient on a drip and fluids I kept asking if I was getting my potassium, only to be patted on the head and crossly told it was in my IV. It was only when my levels crashed causing temporary paralysis and heart problems that they realised they really did need to give me extra compared to a "normal" patient. If they had listened to me none of that would have happened.

  9. In reply to Anonymous...

    Well its a free service, so, what do you expect? Heard of BUPA?

    Ever heard of the term, "Pre-existing Condition"? Since you are advocating paying for private healthcare insurance, maybe you should have thought about the fact that most of the people you are shooting your mouth off at wouldn't even qualify for it.

  10. >> Well its a free service, so, what do you expect? Heard of BUPA? <<

    I've actually had the 'privelege' of going through the BUPA route when my ex-employers decided they wanted a private report from my pain management specialist.

    Me: "I'm DavidG, I have an appointment with Dr X"
    Receptionist: "Who's paying"
    Me: "I'm sorry?"
    Receptionist: "Who is paying? I need a credit card number"
    Me: "My employers, they arranged this, talk to them."
    Receptionist: "I need a credit card, can you give me yours"
    Me "No"

    And yes, it's a pre-existing condition, arguably from birth, so no chance of health insurance covering it.

  11. As for doctors not listening.

    Spinal Consultant: Wow, you have a really good range of movement in your shoulders!
    Me: Not compared to my normal. I said I was hypermobile.
    Spinal Consultant: (Ignores me)

  12. I just wish everyone working in any role in health or social care would read this and take heed.

    I regularly find hospital inpatient stays terrifying, largely because of the constant fear that something will be overlooked due to this kind of lack of communication and I can't think of a single time when there hasn't been some sort of mistake at one point.

    Doctors are aways surprised, annoyed and apologetic, but this will do my little good if misfortune ever leads to a mistake causing serious harm or even death.

  13. I think this appears to be more a case of the patronising "I'm a doctor, I know better" attitude that so many in the medical profession have, rather than a political issue (integrated care or whatever the 'NHS revolution du jour' is).

    A friend of mine with back trouble had to suffer for months and had to switch surgery once and then GPs twice to find a GP who actually LISTENED to her and considered that she might need physiotherapy in a fashion that would resolve her back problem rather than torturing her with cortisone shots, then painkiller shots and finally tablets that left her woozy and turned her from a sprightly 65 year-old into a ghost.

    As for maxillo-facial surgery, the NHS trusts are not particularly much better. When my dentist marks my wisdom tooth extraction as URGENT, it means just that, URGENT. That my NHS trust decided to shunt me from one queue to another to 're-assess' my dentist's requirement for me to have my wisdom teeth extracted pronto, was unacceptable. That they'd gotten rid of virtually all their maxillo-facial surgeons didn't help either. Eventually, even going private didn't help because everyone on the various waiting lists had the same idea. Thankfully our company health insurance paid for all of this.

    Ultimately, what needs to change in the NHS is the 'there, there dear' attitude that many specialists have and who still seem to be in the 60's or 70's where their attitude is concerned.

  14. You don't understand. The NHS is run as a bureaucracy. That means every department has an up and along to the next dept head and then back down to the next dept form of communication. Each department is seperate and runs its own specialities in which staff have their own brand of expert power which they like having but that expertise is not necessarily in communication skills. Bureaucracies are known to be slow and cumbersome. Weber coined the term 'The iron cage of bureaucracy'. So then you think the Condems will help you get more task centred communication about the treatments you need? NO. They are just proposing a choice of private treatments that will cost us all often with our lives. Feel free to ask for better communications and task centred treatment in the NHS but do NOT use that as an excuse to sell out to those fascist Condems who just want to see us all dead unless they can make some profits out of us...

  15. Having just had a relative in hospital I can sympathise with everything you describe. I watched what was going on, and it seems that if something isn't written down then it doesn't get done. After two days nil by mouth my friend was told by the consultant that he could eat and drink that night until midnight as the theatre was full, so there was no chance of an operation until next day. The nurses made toast and tea or soup for patients who had missed the meal trolley. The nurse wouldn't make the tea until the consultant had finished his round and written it down. She had been nursing my friend for two days, she knew he really needed a brew and a bit of toast, she wanted to do it, but she couldn't.

    We discussed all this, (not much else to do in those places) and we watched other patients. We were there for a week, and we saw this sort of thing happening all the time. We reckon they daren't do anything because of all the people who sue if things go wrong. If it is written down then they are in the clear. They ask you questions, write down the answers on their forms, but they don't think. They aren't paid to think.

    We were treated well, with respect and with good care and a good outcome, but even in our case there was no joined up thinking, and each branch of the service didn't communicate with others a lot of the time.

    We didn't find it terrifying as other commenters have done, but we found it very frustrating to be powerless to influence the system.

    I agree, if this government can get one thing right it should be the NHS. Integration is vital.

    And the NHS isn't free. we all pay for it.

    People just pay extra for BUPA to get service when it suits them and not the system, but my other friend uses that and it can be even worse. Her experience would make your hair stand on end but that would be off topic here.


  16. I was at a forum yesterday where we were grilling council's head of Social Care about just these sorts of issues. With 'Personalisation' we are all supposed to be able to take charge of our care within the NHS but it is all just bolt on bullshit. The reality is we aren't listened to.

  17. oh dear, all these stories send shivers up my spine. What I find hardest is that, since learning the fine art of 'doctor whispering' through marrying into a medical family, I am now able to get medical people to do the right things, write down the right things and link up to respond to my needs (most of the time). Have to learn a whole different language depending on whether you're trying to get a doctor or a nurse or a receptionist to do what you need though. I've probably also been lucky - I know there are people who just will not cooperate no matter what you do. It's tragic that medical staff usually only respond to their own language rather than to patients' needs, and we have to spend hours rehearsing what we're going to say to them to try to get the best outcome.

  18. Stefan - in my case it is partly that and partly giant miscommunication of care that is not integrated. My EDS specialist, physiotherapist and occupational therapist are all at the same hospital and could easily have told him that what I was saying was the truth - if he could've been bothered to talk to them.