The British way

Like the majority of people of my generation have formed the knowledge of life in other countries through the TV and movies, neither of which are truly known for their accuracy, unless it is a documentary, but even there you have to still do a great deal of reading between the lines. Being now truly part of the on line world, has shown me more and more what life is like for people who live with chronic illness all around the world. I have pieced together so many different stories and sifted the facts, to come up with one final conclusion, strangely the same one as I had before. It doesn’t matter what country you live in, your true “care”, comes down not to where, but to how much, how much money you have that is disposable. There is a miss conception abroad that once you are ill in the UK, everything is done for you, from your care to your home, well that isn’t actually the situation. Don’t get me wrong, yes our medical care is free and if you can no longer work, you don’t have to pay for the drugs you need unless they are really expensive. If they decide that the benefit of the drug, isn’t enough to make it worth while, even if that means extending someone’s life for possibly over a year, or longer, you will not get them from the NHS at all and have to either go without, or pay for them yourself. Unfortunately this is a growing issue, as so many of the new drugs appearing on the market are expensive as the companies need to make their cost back for their development, before they bring the prices down. I am lucky to not be in this situation as it is mainly people with end stage cancer who are now having to beg, borrow and run fund raisers, just to stay alive that bit longer, so I am not best qualified to talk about the deeper details.

In the UK the words “postcode lottery” are well known, not just because there is one you can win money on, but also because that is how many treatments appear to be available. The NHS isn’t actually one big machine that cares for the whole country, it over sees what is regional care. Britain is broken down in to regions, the first are clear the four individual countries who make up the Union, but within those countries are regions and each regions has control of it’s own budget, allowing the management boards to decide what care they are going to approve and what they won’t. This means that you may not be able to get the treatment you need where you live, hence the “postcode” bit, move anything from 1 mile to 400 miles and you might, or definitely will, there is the “lottery”. You can appeal the decision of your NHS region to see if they will make an exception in your case but the chances are zero to slim. There are already people who have had to sell their homes and move away from family and friends, which are much needed when you are so ill, just so they can get the treatment they need, I can imagine that it is a horrendous choice to have to make, especially when the person who is ill may well still die in a short period of time, leaving their partners miles from what they call home.

Now comes the bit that I do know well, what happens with illnesses like mine. If you know my story, well you know I had to keep pushing and going to different doctors over 20 years, to eventually discover by accident that I have PRMS. Because it is a know condition that doesn’t respond to the normal drugs for MS, my drugs are mainstream and basic, so cost isn’t an issue, the NHS pick up the bill. It is also unlikely for me to be in the position to have to fight for a drug as the drug companies aren’t doing any relevant research as there are so few people with PRMS, just 5% of all MS suffers. That said, it could possibly occur from one of my other conditions, the future will tell. Not only do I get my drugs but any equipment that will assist me from their approved range, which is a mixed blessing as yes I loved my wheelchair, but their perching stools, grabs, walking sticks and splints are really ugly and often not suitable for use, but I have to say that I am really grateful for the stool, ugly or not. I think everything is designed for hospital use, without them thinking at all about people using these things in the real world. This though is the point where help really ends as when it comes to care at home for someone like myself, there is actually very little.

The government pays me monthly a fixed sum call Disability Living Allowance, this is calculated based on how disabled you really are and it is to pay for the extra expenses incurred which covers a huge range of thing including if you need it to pay someone to assist you with dressing, washing and so on. It is also something that isn’t an automatic payment, you have to prove that you really need it and in some cases, not even your specialist opinion is not enough. I was lucky, one way of looking at it I suppose, to be ill enough to receive it without any problems. When I was still working I also received a payment to cover the difference between what I would have paid to get back and forward to work on the bus and the actual cost of my taxis which I had to have. Once I was no longer working, I started to receive not just the normal payment anyone without a job would have, but and additional small payment on top as it is recognised that I will never work again, that and the DLA is what I live on now. The reality of life is that although I have that DLA payment, we can’t afford to use it to employ someone to be here for a few hours each week, at most it would cover the wages of one person for 5 hrs a week, but we need that money just to live, to pay the bills we have, without adding others, no matter how much I might need it. Right now we manage, if we need more help in the future we are lucky again because we live in the right place, in Scotland we don’t have to pay for a carer to come and wash, dress and even feed us if needed, that is free, in the rest of the country it has to be paid for. It doesn’t matter where you live there is no assistance for things like cleaning your home, or doing laundry or any of the other tasks that a disabled person may not be able to do as it is assumed if you are fit enough to be at home, you are fit enough or have family to do these things for you. If we didn’t own our flat and it was rented, they would have then paid part of our rent, depending on what my husband earns, as it stands we get nothing towards our mortgage.

My life may not be perfect and I may not have everything I want to have to live my last years in true comfort, but I feel so lucky to have what we do and appreciate every penny that we are given and every tablet that I take, as I know just how bad it could be if we lived in some other countries. The lottery abroad to me seems to start long before you are ill, it starts at the point when you are born and if your family can afford insurance to pay for health care. Then it continues through your own life, where your health is dependent again on income and what your own insurance covers or not. I have heard some horror stories from countries that I honestly thought treated their citizens well and had compassion for those to ill to work, now I see that too few do, no money all to often means no help outside basic medication and welfare, worse still are the countries who don’t even supply that. The western world may not be perfect but we really should always count our blessings.

Our NHS is far from perfect, you just need to read back into my blog, as there is story after story of the things that in my own personal life, would have kept an army of lawyers busy if we had had the sue culture we now have in the UK, but was unheard of back then. Personally I still wouldn’t sue them, even if I could, as I feel truly lucky to have our imperfect system, even if they make my life harder than it need be, I at least know that when I call, that call will be answered not with “What card do you use”, but with “Hello how can I help you today.”


Please read my blog from 2 years ago today – 18/11/12 – Positive Damage

At times it is all to easy to stop looking out and to spend too much time looking in wards, when you are ill and on your own a lot of the day you loose that feeling that there is a world out there. I often wonder if that feeling is compounded by the fact that annoyingly it has manage to get on fine without you, and…..

Ignore us, why don’t you

One of these days I am going to learn not to speak to Mr. Grumpy within the first 10 minutes of him waking up. I thought as Adam had woken early and with it being Sunday, he would be going to going through to our bedroom and bed to sleep for a couple more hours. For many years, by his own choice, he has slept on the settee, as he knows how important having my nightly 11 hrs of sleep are and with his ability to snore so loudly that even through a wall, I can still hear him, sleeping together doesn’t really work as neither of us get much sleep. As usual I don’t think he was really listening to me as I was asking him if he was going to bed as I would go through and sort the bed before he did. One of my pillows hangs off the back of the bed, but to lower the mattress, he has to move them, the problem is he can’t resist fluffing them into a pile, all I wanted was to slide them down the bed and not have them fluffed, I got my head bitten off, again. It is strange just how long two people can live together, but still make the same stupid mistakes over and over again, but I guess the rest of life is no different, if I think through my years, I see too many things that somehow I just didn’t learn my lessons. Be honest, I’m sure you are just the same.

I doubt, even if by some miracle that I live to be 100, I will still be making one mistake in life that I just can’t escape, reliving the past over and over again in my head. I don’t know how many hours I have wasted, reliving conversations and situations that didn’t turn out quite as I wanted, or where the other person has somehow taken what I said totally wrongly. Adam was the first person I have ever met who owned up to the same issues, he too is just as bad as I am and like me he to was still worrying over things so long ago that he didn’t even know any of the people concerned any longer. I had gone around for years thinking it was just me, as on the odd occasion where I have returned to the person concerned and asked them about it, they have either brushed it aside saying it didn’t matter, or looked totally confused as they couldn’t even remember the event I was talking about, but it doesn’t stop me beating myself up from time to time for my stupidity for not handling things better at the time. I guess that it could be viewed in many ways from the fact we are both caring people, through to the fact we have both been through violent traumatic events, that would leave anyone questioning why me, what did I do? I realised recently that nearly all of the situations I am talking about were all with people who for some reason or other, had a level of power over me, as in they were all bosses, or people I cared deeply about, apart from one group, they are all doctors. I know I have written before about how my upbringing instilled this state of having to accept what people in any of the traditional figures of authority said or did, without any argument, but I hadn’t realised just how deep that had gone, or how many still live in my head. Once I had picked up on the group, it took seconds for my brain to throw up situation after situation where if I had just fought my side, like I eventually did, I might have been diagnosed earlier. My parents really do have a lot to answer for, probably not just mine either, I am sure that Teressa has her own list as well. Every time I go to see a hospital consultant, I go in with this list of things to say, questions to ask and answers I want without any of their fluff, but fluff is what I normally leave with and I always thank them for it, politeness to the extreme. I guess that is why I have put so much faith into my GP, he is the only one that actually listens to what I say and responds, to the extreme of in the past picking books of his shelf to show me diagrams and details I wanted to know. I didn’t realise fully thought until Friday night just how much faith I have put into him and how my health is tied to him alone.

Let me say quickly this wasn’t the first time, but it was the first time that I really noticed the thought going through my mind and stopped myself for a second to question it. What I thought was, “I just hope that my body doesn’t do anything extreme as that’s the doctor’s closed until Monday.” It wasn’t just the words, there was a feeling of fear connected to it, a fear of having to be taken out of the house and having to go to A&E, then wait for hours to be just shoved on a ward as they don’t know what to do for me as I have MS, or being sent home with an appointment to go back that week, meaning another trip out. I have been dreading the weekend for quite a while now, as my GP is the only person who will come out the house if I need to actually see him, not just talk. I had decided a long time ago that if anything happened at night, if it were at all possible I would wait until the morning to phone for assistance, for all the same reasons, the NHS just isn’t geared up for dealing with the housebound. For example, if I fell and cut myself and the cut needed a stitch, well rather than a medic coming here and sticking a butterfly on it or putting in a couple of stitches, something which would be both time and cost effect. I would have to have a full ambulance crew & a stair climber, plus hours of waiting, draining me further of strength and energy, then another crew to bring me home. It’s total madness, the amount of money that would all cost, when one paramedic or one doctor in a car could sort the whole thing in minutes, plus save a fortune. If I had a heart attack, well that is clearly a different story, but there is so much that could be done at home without making our health worse. For it to have got to the point that I am now dreading the hours I don’t have my GP on call, tells me there are thousands out there in the same position, if not millions and especially the elderly. How many are sitting there right now in their homes, possibly with serious conditions that should be treated now, not calling for help, simply because of the system.

I am beginning to realise just how bad the care for people like myself is, it did always worry me, from the point I received my diagnosis and I realised what my future was, but like so much else I swept it under the carpet, with I will deal with that when it arrives. Well it has arrived and I am in the position I feared and nothing has changed, but I don’t know what to do about it, other than make some kind of stand, which to be honest isn’t something I have the strength left to do. I had this stupid idea that somehow the world might move faster than my health ever could and that by now it would all be simple, a system there that recognised the issues and had the solutions, it hasn’t. The why is so easy to see as well, we the housebound are easy to ignore, it’s not like we can protest outside their offices, or turn up at meetings, we are the invisible in every way.


Please read my blog from 2 years ago today – 16/11/12 – The gaps that are found

I have noticed something in the last few days that has made me smile to myself and even go as far as the odd snigger. I hadn’t noticed this but I guess like many other things it has sneaked up on my slowly, but I seem to now have long complex conversations with myself in my mind. I know we all do it to some extent but I now hold and rehearse constantly, the less able I am to put those……