There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are just apt to my post today. When I first had the idea put to me that I had MS I wanted to find out as much as I could about what I was facing, at that point I didn’t have a confirmed diagnosis, just an opinion of a doctor who didn’t specialise in neurology but ENT. What I did was what many do I started to read everything that I came across, I read and read and scarred myself to death and also laid down in my mind a lot of rubbish, of things that may never happen or have and aren’t as bad as the medical description made them out to be. At that point I thought I was arming myself for the future, that I had to know what was possible to happen to me as time passed, I wasn’t.
One of the things that I would love to change about the whole medical system in the UK is how and what they tell you when. I do believe strongly that they should tell you everything they know and not hold back anything at any time, but they miss terribly the opportunity to help us all learn and understand what is wrong with us. Some of you may think this isn’t a Doctor job and I am not suggesting that it is, what I am suggesting is that knowledge packs should exist for all chronic conditions, it is that pack that should be handed to you at the point of diagnosis. I and many I have spoken to have all come away with questions that once out of the hospital the only place we have for information is the internet and as we all know that isn’t the place for a novice to find reassurance.
The first thing that I would want to see in such a pack is firstly a FAQ, I will almost guarantee that every doctor could put together a list and those list will be not unexpectedly reasonably identical. I know in the last few months on twitter that I get asked again and again the same things and I try to answer but I am a patient not a Doctor, I can only ever answer with how it affects me. I do know that a lot of conditions are individual to the patient but there always are huge crossover or even universal symptoms that could be explained.
The second a glossary of terms used and what they mean. I have on a few occasions translated doctor speak incorrectly and it is their language that is confusing ,not what they are saying, plain English isn’t used by the NHS and it often feels as though they are talking in a foreign language on purpose so you don’t know what they are really doing.
The third would be a list of web addresses and literature, that have been checked for their presentation of information and passed as suitable to read. I have trawled through medical papers and research notes trying to find what I am looking for and not been able to understand most of them, wasting hours for a simple question.
The fourth a list of organisations and charities along with contact details that specialise in assistance for that particular condition, with a few details of how they can help. I am not big on these but I know a lot of people find them helpful.
The final one is actually the one I hear most tagged with “no one told me” is a list of what benefits and support that are available if you fit the criteria and how to claim them. There should also be info on what might be available in the future such as carers, respite and so on, all these things I know change from area to area, and the criteria change from time to time, but if you don’t know it even exists you can’t even try. I spent 2 years paying out over £300 a month for taxis, there was I eventually discovered a payment I could claim that paid the difference between what my travel expenses would have been use a bus to travel to work and what the taxi cost was, it worked out that I only had to pay about 1/3, the rest was picked up by the EU. I know I was surprised to the EU doing something useful.
I would have given my right arm to have had such an information pack. It was months after diagnosis that I was given a couple of one page leaflets that told me nothing that I hadn’t already found out, but it had taken a lot of work and upset to get it. I really believe that armed with this information it would make adjusting to your condition a lot easier. Not everyone I know wants to read anything other than a one page list of contacts, but the more you know and the more you learn about thing, the better you are armed for the future. When a new symptom that you didn’t even know could happen in your condition appears, it is frightening, if you already knew it might happen, then the fear is lessened and being calmer, you deal better with the situation you find yourself in. In a round about way as well the pack would save the NHS money as a lot of visits to the Doctors are not needed all that is needed is to know it is normal to your condition, or that it is something to get seen about asap.
Not everything can be covered for every person but surely it is better than people around the country stressed out trying to find the info they need when someone already knows, and they just haven’t told you.