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
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