Multiply wrong

Sometimes, good ideas just appear when you least expect them. For me, one appeared yesterday afternoon while answering some of the comments left on yesterday’s post. For a long time, my doctors have done little other than to throw more tablets at me and in around about way, tell me there is nothing more to do. The problem always seems to be that consultants don’t have the time to be able to understand our circumstances, outside our basic condition they specialise in. Our GP’s don’t have the in-depth knowledge of the finer details of our conditions and if like me, you have more than one chronic condition and if one of those conditions happens to be rare, well you are almost on your own, with the issues that they combine together to produce. As long as whatever is bothering us at that moment, slots perfectly into their speciality, we’re fine, but when there is a cross-over or a joined up combined effort, they are lost. Yet, they insist on keeping us under their care until our bodies start to seriously shut down when they eventually hand us over to the palliative care team.

It may just be down to the care that I have had over the years, but it appears to me, that what we need is another set of doctors/nurses, who if you like, will simply be chronic illness specialist. A team who would step in, once the consultants have done all they can, and before true palliative care is required. It doesn’t take a genius to read blogs from people who have different chronic conditions to see that we frequently share the same problems. Nor that the more conditions you have, the more broken and confused our care becomes. This team would be there to coordinate between them all. They would be able to keep a closer eye on our overall health and how we are dealing with our treatments, medications and even our pain levels. All things that the care we have right now lacks. They too would be able to call in any further support required or refer us back to our consultants when they see the need.

Multimorbidity is a nasty sounding word, but once you have three or more chronic conditions, that is the name that then applies to you. We are a group of people who as they word says, are dying in multiple ways. Is it any surprise that we fall through the gaps constantly. Frequently we don’t get the care we need, often because we ourselves don’t know which condition is causing what. Many appear to feel lost, unsure of what is available and who to turn to when they do need help. Having a support team not linked to one condition could change our lives dramatically. I, for example, have a dedicated MS nurse, not that I have heard from her for years. She is connected directly to my Neurologist, and knows nothing and can’t help with anything outside issue caused by my PRMS. I also have an MS nurse through my GP, he is great with MS issues, but nothing else. Outside of my consultant, who are in fact, very good, I have no support nurse or team for my COPD at all. Those two conditions aggravate each other, but right now, I make the decision who to turn to for help, something I’m sure I get wrong frequently. I also have a list as long as my arm, of other conditions, the worst being Fibro, HMS and Vasovagal, all that I deal with totally alone other than my GP. Right now, though, my biggest issue is caused by my PRMS, but I am waiting to see the Gastro surgeons due to incredible pain in my stomach. Confused, well put yourself in my shoes.

I know, simply by talking to people online, that there is a huge number of us in just this position. When you are constantly fatigued, constantly in pain, generally confused by the whole system, caring for ourselves isn’t always that high on our list of priorities. When it feels as though the medical profession has given up on you, and won’t be interested again until we’re near the end, is it any surprise. Yes, I know that on the surface, that this type of team would cost the NHS more, I think in reality that it wouldn’t. I am sure that it would, in fact, free up consultants, other care teams and GP’s. It would also ensure that the correct care at home, the right equipment and aids were also being supplied. Once your health has deteriorated to the level that mine has, the idea that I had one person, who unlike my doctor can come to my home, see me, assess me and instigate the right course of action, sounds like heaven.

Multimorbidity isn’t just a nasty sounding word, it is also a nasty place to find yourself. In an ideal world, all the above would be dealt with, we wouldn’t be left on our own to deal with all of it. What I don’t understand is how there is this sudden point when someone, who knows who decides it’s time to bring in the palliative care team, when we have dealt with everything to that point on our own. To me, that is a somewhat warped way of looking at our lives, that somehow our deaths get the attention we have lacked and needed for years. Somewhere along the line, the whole system has become twisted and for some people, especially those who live by themselves, it has quite simply become cruel.

 

Please read my blog from 2 years ago today – 26/03/2014 – Rotting before my eyes

I’m waiting, something I don’t think I have had to do for a while, the chiropodist phoned to say she is coming to cut my toenails this morning, once every 4 months they appear, cut them and vanish for another 4 months. It isn’t a problem for me as I don’t ever have to put on shoes or try and walk any distance, but I can imagine that many would find 4 months just too long to live in comfort. She suggested that I file them every couple of days, something I just haven’t done, like so many other things……

25 thoughts on “Multiply wrong

    • Your so lucky, I rely on the NHS. Not all my conditions are dealt with in the same hospital. Until last year, my notes were paper based and I had different notes at different hospitals, and of course, another set with my GP. The hospital now has them on line and shared but not with my GP, his are totally separate. I haven’t even seen any of them, yet despite my health, I am still expected to juggle all or them and stay on top of it all.

      Take care 🙂

      Liked by 1 person

  1. I was trying to comment yesterday but it wouldn’t go through… If I had a car, I would be traveling to the new neurology campus at a hospital. There they have MS specialist for every aspect of this disease. Hearing, opthalmologist, GP, neurologist, ext. I also have lupus my GP discovered and osteoporosis arthritis my ortho found. The osteo has no treatment available to me other than pain meds which are working right now but it is spreading quickly. I have COPD which is mostly controlled. I have no clue what else I may have. I also being DX 16 mo ago, am still trying to figure out what is MS and what isn’t. Relaying info to the Dr’s is another big issue. My cognitive impairment makes it a big problem. I have now started just writing one word lists like vertigo and handing it to them or bringing up one of your blogs that mirrors what I feel. Your idea does sound like heaven on earth. I know they’re out there but some Dr’s I think, don’t want to let go and put our need’s first. And it is exhausting to research, talk constantly on the phone trying to be our own advocate. At least it is for me. Especially when you talk to one person after another who doesn’t know MS speech. I get so stressed that I can’t talk at all.

    Liked by 3 people

    • I don’t know who on what planet honestly believes we are up to all of this. What they miss are two important thing, we have conditions that affect our mental abilities and fatigue that makes everything harder. So how are we supposed to do any of it? Maybe one day…….

      Liked by 2 people

      • You might want to consider asking your gp if they run expert patients program in your area or Google it. It’s a free NHS course on how to manage medical conditions and I’ve been reading a few of your posts and a lot of the stuff you’ve had difficulty with is part of their courses. I went on a fibromyalgia specific one my area (Leeds) runs and it helped me so much. They don’t offer any cures but they teach you stuff like dealing with multiple doctors and how to find out what activities you can and can’t do. Also the supportive environment is brilliant. (and no I’m not being paid to say this, but I am involved as a volunteer just for full disclosure)

        Liked by 1 person

      • I just did a search on google and although the Scottish government appear to be behind the idea, so far, they have just produced a leaflet on it. There is also one huge things that stands in my way, I’m housebound. All this sort of resource is of no help to me. From what I read it is also more for people in the earlier stages. What I am looking at is for those who have multiple conditions and there is no possibility of any improvement, but aren’t quite dying yet. Personally, I have been told I have about 7 years left, short of saying it, they have given up on me, just tests to make sure my meds are helping as much as they can, or do I need more.

        Even if I could get to such a thing, my fatigue levels and frontal lobe damage means I wouldn’t be able to handle it. That’s why I suggested someone to aid us as not all of us can even do something like you suggest.

        Thank you for the thought though and I hope you continue to benefit 🙂

        Liked by 2 people

      • It’s a shame scotland aren’t doing it yet. It’s very helpful for people even those in your situation and the Leeds one make a great effort to make it accessible for everyone. It’s not much but it’s the closest thing we have to the kind of service you describe (which is a great idea, I wish someone would fund it!)

        Liked by 2 people

  2. I really like that idea of an intermediate team of people who care for the chronically ill – are experts in chronic illnesses. That is sorely needed in my opinion, because you are correct, our physicians can deal with what they know, but beyond that – well like you, I get a pill or a medication thrown at me. Usually I smile and nod and don’t ever use the stuff they prescribe because I just am tired of being so medicated, even over-medicated. My best wishes for your continued journey – that you may find some relief and some people who ‘get it’.

    Liked by 2 people

  3. You’re absolutely right on this. I’ve come to realise, too, that this kind of “overviewing” specialism is needed not only in the context of medicine and doctoring but in many other parts of modern civilisation. Just really not sure how it might be done, but maybe by using modern tech as an extension of such connecting and holistic skills and instincts it’d be possible.

    Liked by 1 person

  4. That is a brilliant idea! Unfortunately most of the docs that I go to think they are experts in their field but the only thing they do is throw meds at you, suggest shots with meds in them and hurl insults because they think I am either faking it or am lazy!

    I have finally found 1 true “expert” in the field of MS…well at least he was the first to take me seriously and the first to order specific test that definitively diagnosed my MS (FINALLY!) I actually was looking thru my medical records and came across notes of less than a year and a half ago where a local neurologist wrote in all caps with exclamation points NO SIGNS OF MS!!!! I should take my current records/diagnosis to his office and throw it at him! Seriously, if I had the proper diagnosis sooner maybe I wouldn’t be as far along as I am. Not that I am housebound or wheelchair bound but most days I mine as well be.

    My new neurologist listens, is compassionate and tries to help…but still throws meds at me 😦 But what else is there with this crappy disease? I was just diagnosed in January and have been trying to educate myself but like he said I also have Chronic Pain, failed back surgery, fibro, raynaulds, degenerative disc disease in neck and back, chronic migraines, thyroiditis, hashimoto’s and chronic fatigue syndrome. I’m a walking mess…but at least I’m still walking for how long I don’t know and that scares me.

    My husband tries to understand but every time I mention some other aches or pain I can see it in his face…he just can’t handle it! I just decided not to talk about it any more to him. There has been a couple of times I really needed to go to the hospital but the stress of that would send him over the age…and well I guess I really didn’t because I woke up the next day and I was still alive!

    I hear people go to the hospital due to MS but for what? I guess I am just not that person…I don’t go unless I’m having surgery (which will never happen again) or I think I’m dying…like when I couldn’t go to the bathroom for 8 days…on the 8th day my body was screaming so I went (thinking something was horribly wrong like obstruction or something…nope, just due to pain meds…how embarrassing) but stressed my husband out so bad I thought he was going to throw up.

    Jeez…how did I get on this rant??? MS mind…all over the place!

    Back to your idea…they actually have places like that here in the US…kinda, sorta…when my brother in law was in the hospital, he was in ICU and they couldn’t due any more for him but they swore he wasn’t bad enough for Hospice so they were going to send him to critical care which is in between the two but they wanted $2,500 a DAY to keep him there! (his insurance had capped after being in the ICU for 5 months). That’s an entirely different and long story…

    but what I was getting at was…there is something close to what you are talking about but I think your idea is more along the lines of a specialist of a specific chronic illness which would be awesome!

    Ok, done with my all over the place rant…sorry…wishing you much wellness and peace…I always look forward to your posts!

    I separated the paragraphs because I was told on a forum that it’s easier for MS peeps to read…so I try to write like that because he is right…it’s a lot easier for me to read for sure…and I’m ranting again….😳

    Liked by 2 people

  5. I’m right there with you, sister. Thank you for saying so much of what I am feeling and where I am at.
    I’ve been in a similar place since I was 28, and thought I was dying, and they were completely hands off from that point onward until now, 33. It doesn’t make sense how we can just be left to decline and decline, be sight unseen to rot, as though our lives don’t matter.
    I’m in the process of getting palliative care and contacting senators, because no doctors will take my case any more. It’s a very scary and desperate place to be in after fighting for 11 years. People with one condition ask me all the time how someone with a chronic illness could be so selfish as to take his or her own life… Well, it’s all a journey, baby.
    It’s a beautiful life, and I love it, and I’m an optimistic person, but I know you are as well, and this is all just ridiculous.

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  6. Excellent idea to have a special team for comorbid conditions! I agree 100%. I am on the verge of a crisis right now with my autonomic nervous system going haywire and my GP decided to make his dumping of me official over the weekend because apparently he didn’t like the “tone” of my latest message on the Patient Portal, but who was he really kidding. Only himself, because he had not been truly treating me for awhile now. After 3 months of abject medical neglect I’d reached the end of my rope because I figured out that he was letting me suffer when there was something he could do, but that he willfully refused to do it. If it had been mere ignorance on his part I could have somewhat excused that but it was cruelty.

    He said he’d only be available for emergencies but last time he just stood there and another hospital had to pick up the pieces. I don’t believe anything he says anymore.

    I really think in addition, there need to be new laws made to protect people like us from doctors who in fact don’t have our best interest at heart and use our vulnerabilities to abuse and neglect us. I have an appointment with General Neurology in the morning but because the neurologist assigned to me is on maternity leave I will have to see the nurse practitioner whom I’ve never met so I’m placed in the position of asking total strangers to write orders and referrals.

    The appointment tomorrow and then the pulmonology appointment on Tuesday will give me some indication of who is in my corner and who isn’t. I’m hanging on by my fingernails right now but things are not looking good.

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    • I hope that your appointments go well and that you get the attention and care you are looking for. If there were a team to turn to, these issues would be taken off your shoulders. Having an intermediary is often what is needed and it’s something we don’t all have right now.

      Good luck (((Hugs)))

      Liked by 1 person

      • Thanks. That’s true. It sure would help! Even if they had a social worker in every clinic to take care of those type duties that would help.

        I’m now writing a list of things I need help with to pick up the ball my GP dropped. I hope the Neurology clinic doesn’t run the other way tomorrow. This guy left me in kind of a jam doing this on the spur of the moment because I found out that my last refill for pain meds and spasticity meds ran out earlier this month before it was even time to renew it.

        Also two specialist referrals in addition to the IV Saline order along with home healthcare.

        It’s a little scary that my pulmonologist said no to the two referrals after he’s not done that kind of thing before. I hope this is not going to become a trend.

        Liked by 1 person

  7. You made so many good points in this post! Though not housebound, I rarely have the energy to leave the house. You have an excellent idea about the medical specialty that would bridge the gap between the individual specialists and palliative care. I think that’s what the gp was meant to be, but now they don’t have time to look at the whole picture. I also really identified with your comment about the difficulty of determining which illness is causing which symptom. Is it my fibro, or ME/CFS, or hypothyroidism, or my low blood pressure, or something new? Frustrated doesn’t begin to cover it. Know that you aren’t alone, and know that your eloquent blog posts are doing a great service.

    Liked by 1 person

    • Thank you for reading and for leaving a comment, it’s nice to know others views and that I am not the only one who bangs there head of the wall with the issues our health bring. It’s not until we reach this point, that we realised just how hard it is to navigate it all. I doubt the help we long for will appear in our lifetimes but we can at least hope for the those who follow us. (((Hugs)))

      Like

  8. MULTIMORBILITY- HATE IT -HAVE IT. THE REST OF YOUR POST, ** SO TRUE.**. I CAN’T TYPE MUCH LONGER. HAVE TO REST.DON’T WORRY ABOUT ME.I’M DOING MUCH BETTER FOR NOW. I JUST DON’T WANT TO PUSH MY LUCK.

    Like

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