We’re here

I was chatting with the district nurse this morning about an issue I had with a prescription Adam had phoned into the doctors on Monday, she confirmed my belief, I am totally invisible to the NHS. Adam had phoned in the prescription as he always does, and as is perfectly normal, we heard nothing until Thursday evening, when chemist delivered the oversized bag filled with meds. Amongst it, there was a blank prescription sheet with what was clearly a doctor’s writing across the top. I said clearly, but it was the very fact that it was almost illegible, that gave away the origin of the note. We could make out that it had something to do with the potassium tablet that I take, helped by the bigger clue, they were missing from the order. Adam phoned the chemist and they apologised as they had meant to decipher it for us before putting it into the bag. Apparently, the doctor wanted me to have a blood test, before issuing any more of this drug. It didn’t quite make sense, as if my doctor had wanted me to have a blood test, he would have just asked the district nurse to carry it out, as he knows they are here three times a week. Perplexed, there was nothing more I could do until the morning, doctors not being at work in the evening. I wasn’t just confused, I was also concerned, as I had taken the last of that particular medication that  morning, not worrying at all about missing the lunchtime dose, as I knew they would be here that evening, but now I had missed two and god knows how long the test would take, then for the prescription to be written up and filled.

This morning I phoned and spoke to my GP, he confirmed what the note had said and after a moment’s thought agreed with it. It hadn’t been written by him, but another member of the practice, who doesn’t know me and doesn’t know that I’m housebound and that I wouldn’t see it on the day she wrote it. He told me not to worry about not having them for a couple of days, and he would ask the nurse to take my blood today. This is far from the first time, that something has gone wrong in the communication between GP’s, District Nurses, and hospitals, due to there being nothing what so ever, without reading my notes in detail, to know that I am housebound. While the nurse was hunting for my vein, I asked her a question. “Is there no way that it can be added to the notes of people like me, somewhere that it is clear for all doctors and nurses to see, that a patient is housebound, so things like this don’t happen?” She smiled and said that I was far from the first to ask and in fact, her boss had asked that exact same question many times. I am not the first person to have been caught in one of these “misunderstandings” and I, personally, have experienced it at least twice before. She told me that details like that, are missed all the time and there are thousands of patients, just in Glasgow alone who are housebound, admittedly, most are elderly, but like me, not all. It has, and can cause huge problems, but to date, nothing has been done about it.

To me, that is yet again another sign that we are truly invisible, not just to the outside world, but even within the medical one as well. How can it be that something as simple as adding a code, or even a separate field beside our names, so that all concerned know and can then treat us, in that knowledge? I’m not a doctor, but to me, I can see with ease why it could be incredibly important to know at a glance, that not only is a patient housebound, but also currently in the care of the district nurses. Not only could this save time and money, it could ultimately save lives.

As we talked she told me that she had completed and faxed the form over to Westmark, with regards to my needing an electric wheelchair. They phoned her straight back and explained that my file had been closed a few years ago and that she would need to fill in a different form, for a fresh referral to them. Once again NHS madness. The new from included details of my medical condition and so on, all information that they still had in the so-called closed file. Not only is it there, but it is also right in front of them, on the same system, the nurse would be taking the details from. Shear time wasting and money wasting, but without it, no new chair. She told me that a large part of her day is now spent filling in forms, forms that serve no purpose, other than keeping someone employed designing them. The NHS screams constantly that it is short of money, well let start by taking out all the duplication of work that appears to be going on daily. A referral needs nothing other than the patient’s name, CHI number and what they are being referred for, ie wheelchair. Job done. The rest is there on the system, or should be part of the assessment. GP’s and nurses should be spending their time with patients, not filling in constant forms, or worse still, writing letters about what is there to be read off a screen. Just think, they could save millions of trees as well.

I know that I have time on my hands these days, but I can’t be the only person who looks at all of this and says, “Hold on, this can be done better.” In the past, I know I have suggested both in my blog, and when talking to actual doctors, of using phone calls and Skype for consultations that don’t require physical tests and examinations. Time and money saved, they are quicker, require less hospital transport, (ambulance, driver, attendant and costly stair climbers) for people like me. All savings for the NHS, and importantly less stressful and tiring for the patient. Yet, people like me, the actual patient, can’t get ourselves heard, because we are housebound. If we could get out, I could join in one of the hundreds of forums running across the country, all about improving patient care, but we aren’t heard, because we can’t get there. We are invisible and there is nothing we can do about it. Our care will never improve, because we aren’t only invisible, they can’t even hear us either.

 

Please read my blog from 2 years ago today – 10/09/2014 – On the lighter side

Breakfast over and time to write, it was an odd breakfast this morning, in fact, I don’t know what made me even think of having fried halloumi on rice cakes, but that was what I had, well it’s a change from porridge I suppose. I bought the halloumi to try as I had never had it but I knew it was a cheese that you can fry or grill on its own, I had tried grilling cheese onto a rice cake but it did exactly what I…..

14 thoughts on “We’re here

  1. Again excellent post. Duplications to even contaminating a walking frame….. you havd to practice on so have to keep. Why when you ve got one at home…..answer you ve contaminated it.
    I can say more like you and feel like you. An easier way can and should be done, I feel like a germ after this particular incident. Yes we are complex so let’s have a system that keeps it simple=save money = be patient care in the end. A simple sign post on systems like you say would be easy. It certainly needs to be changed by the powers that be.
    I know it will get sorted for you as you have the capacity to say to district nurse or Adam makes a phone call but it is a disturbing and frustrating thing to go through. To me these things break my will. Thanks Pam somewhere we need a platform. X all the best

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    • I am able to push for what’s needed for me, but far too many aren’t and unless the system changes, someone along the way, will get lost and ignored. It is made even worse by the fact that we the patients aren’t aware of they way the system works within the NHS. We make assumptions that everything about us, is there, easy to access and therefore known by all. The truth is that it is there, but not easy to see at all. No doctor is going to read our entire notes, just to see if we are in the care of the District Nurses, especially when you age implies you are mobile and still part of the normal world order.

      As for how you were treated, well that is ridicules. Surely the cost of cleaning the walking frame, would be less than acquiring a new one? Not to mention the way that comments like that, make the patient feel. It may be a small and logical thing to them, but not to us. I too would have gone away feeling as though I had Ebola, not a disability. How we get heard, though, is a different thing. It leaves us feeling more and more pushed to the side, as though, we are not important in anyway to anyone. 😦

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      • Hi, thankyou for reply at the moment NHS and Social services really pass you on to someone else which I feel is a revolving door of confusion along with DWP when you have short term care and housing issues and working out the cost of that when the financial assessors have a back log
        Personally makes me worse than I ever imagined. My only hope somewhere all this system is simplified for the patient and/or carer which are equally important but again I feel invisible. As probably you know it’s a juggling skill. I ve dropped all my balls now which adds too the complexity of the issue
        One thing I do know is love and if a person loves their job or you this is an unconditional thing which hopefully will never get lost and brings happiness and sunshine into lives.Alot of your quotes are about love and this shines through in each and every post. Let’s hope one day our invisible lives become visible. Thanks again in writing a very rich , truful and unbiased blog.

        Liked by 1 person

  2. Great post. In the US Healthcare is drowning in useless administration and it gets worse every year. I have been in the field since 1984 and now it is unrecognizable. Worse is the physicians are helpless to stop it. If they went on strike for 24 hours it could change but too many lives would be lost. I am very thankful for the many caring and talented docs and others who stick with it and help people in spite of the crap thrown at them by administrators and a government who do not know how to take care of patients.

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    • I am pretty sure that the story is becoming the same world wide. Much of it unfortunately is all about covering their backs in case something goes wrong. The problem is, all this form filling is exhausting, raising the possibility of things going wrong. It needs to be taken back to it’s roots and started again, simplified and approached logically, from both the physician and patients point of view, but that happening, is more than unlikely.

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  3. Most Western governments seem to have low regard for doctors, let alone patients. The sort of people attracted to politics think in terms of money, capital, wealth … and doctors / nurses (which are often vastly more educated than politicians) don’t rank. Even in the UK there are millions underemployed (and millions too busy!) and a sane society would enable the underemployed to become socially useful. Don’t hold your breath 😦

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  4. Pingback: We’re here – shared from MINDBLOGG – FibroWarriorMum

  5. First of all, thank you for sharing your experience, I wish it weren’t so (for you and so many others!) Your writing is very timely and articulate, sharing life experience that many will never know.

    As the US faces a ridiculous election season, some of the candidates spout comments of our current healthcare system. “If only it were more like ____” (fill in the blank as you wish – UK, Canada, China). Your commentary brings to light that many portions of the medical system are broken.

    The points you make are extremely true – waste, duplication, miscommunication, apathy, and incredible workloads are true here, there, EVERYWHERE. I agree with your thoughts in decreasing the “busy-work” and increasing the patient interaction. If the people who are the recipients of the health system were listened to and taken seriously, perhaps changes could be affected.

    I hope you don’t mind, I am reposting this post on my blog – with credit to you – more individuals need to hear your words!

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