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Thread: How many carer visits do you have

  1. #11
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    CC - It's called Post Code Lottery. Each regional NHS organisation has their own rules and requirements. Someone just a few miles down the road, across a county border, might get a completely different level of care for the same condition, just because they fall under the rules of a different NHS organisation.

    Boiler - One of the things that makes MND so very difficult to treat, from the point of view of designing support services for it, is how much it differs from person to person. It's difficult to diagnose, and once diagnosed, impossible to predict, and people who mostly support other conditions just don't get how debilitating it is. (I'm sure you know all that)

    Earlier this year I was trying to get my housemate an appointment with the wheelchair services organisation to upgrade her wheelchair. They kept giving her early morning appointments. And I kept phoning them up, and explaining that it can take 2-3 hours to get her awake and ready to go out the door, and as she doesn't sleep well, she doesn't wake up easily before 11:00. So a 9am or 10am appointment is impossible to make, and is very stressful for everyone. They would tell me 'no problem, we have afternoon appointments, we'll give her one of them'. Then, the next week a letter would arrive for a 09:30 appointment. I gave up in the end.

    Usually, helping her with a bed pan takes 30-45 minutes, if everything goes smoothly. Last night, it took 90 minutes. Organisations just don't seem to grasp how difficult and time consuming simple tasks can take when you have MND. Even those that expressly support MND patients. It's infuriating.

    One of my frustrations now is that my housemate has only seen her MND consultant once this year, because every time he books an appointment for her, she's had a bad night, or is in too much pain to travel, and we cancel. Here's what is involved in going to the hospital for a 15 minute appointment with a consultant in his office - no medical checks, no scans, just a 15 minute chat in an office.

    - first, an ambulance is booked and they give us a 2 hour window when they might arrive. So if the appointment is at 11:00, the ambulance could arrive at 9am.
    - If we budget 2 hours to get my housemate ready, that means she needs to be awake at 7am. She's not a morning person, and it takes her awhile to wake up, and for her body to demand bodily functions. So, she might ask for a bed pan around 8am, right at shift change for our carers.
    - It can take 30-90 minutes to do a bed pan.
    - And let's not forget 20 minutes to do morning meds, plus set up her feed. Want to get some feed in her before she goes out.
    - Ambulance takes her to hospital, she has her 15 minute appointment - remember she could have already been on a stiff stretcher for 2 hours by this point.
    - Ambulance trip back home.
    - Move back to her bed,
    - lunch time meds,
    - bed pan, etc. etc.

    A 15 minute appointment can take 6-8 hours of our day to attend, and will take my housemate 2 days to recover her energy from. What pisses me off, is why can't the consultant drive to our house (a 20 minute trip from the hospital) have his 15 minute appointment in the comfort of our living room, we'd even offer him a coffee, then he could return to work. That would be so much easier.

    I am doing my best to educate the services that support my housemate to what her requirements actually are, like the above. I write letters of complaint all the time. I used to work in the NHS, and understand a bit how they work. It is very much a rule of, 'The squeaky wheel gets the grease.' If you don't make a fuss, they won't listen to you, and will just do the standard stuff they do. You have to make your voice heard, document what is required, and show them proof of how challenging your needs are. File an official complaint with PALS, and follow it up. Scream, shout and jump up and down, and then you might get some of the services you require. Get to know the people caring for you as well, get to know them on a first name basis. Be nice to them, get them on your side.

    Boiler, your hubby was on the loo. Now, I know what a person who has full use of their body thinks that means. What you have to do is get them to understand what that means for a person whose body doesn't work. How long does it take? 30 minutes? 45? 60? Think of it like when you're filling out benefits forms. Take the absolute worst case scenario, and write it up as if that is the normal, base line requirement.

    Before my housemate was bed bound, a trip to the loo would go like this:
    - put on splints (20 minutes)
    - Lift up in stand aid and move to wheelchair (5 minutes)
    - Take her and stand aid to toilet (5 minutes)
    - Lift up in stand aid and transfer to toilet (5 minutes)
    - Give her privacy for 10-20 minutes as required (20 minutes)
    - Clean her up, return to wheelchair (10 minutes)
    - Return to living room (5 minutes)
    - Lift in stand aid and return to chair (5 minutes
    - Remove splints and get her comfortable (15 minutes)

    90 minutes on average. And that was a 'by the book' scenario. We never actually used the wheelchair to move her from one room to the next, we just did it in the stand aid because there was no room in the house we used to live in to do it that way. We were told that was wrong, but had little choice. But still, I would document it 'by the book' way, and stress how long a simple task takes.

    If you can document a week's activities to this level of detail, then you can start to build a case for more support, and for getting people to understand why you missed an appointment on short notice. The NHS is doing a big push at the moment against people not showing up for appointments. So phoning them before the appointment, even 5 minutes before, keeps you off their naughty list.

    Pen
    Hanging in there, one day at a time.

  2. #12
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    Below is one of the log sheets we used to use.

    We keep one sheet each day, and it was meant to be quick and easy to mark down when you did something, and what you did. We used this to justify the care plan we were asking for, by showing how much support my housemate needed throughout the day and night.


    Logsheet.jpg
    Hanging in there, one day at a time.

  3. #13
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    Pen..thanks for the advice. When you break it down like this it hits home how difficult being a full time carer is. And you're right. It's all consuming sometimes. We had a big blow out a few weeks ago over his manners - or lack of should I say - and speaking to me in a derogatory, totally uncalled for way. I actually took a note from the illustration on Hugh Marriott's 'A Selfish Pig's Guide to Caring' where it show the little pig trying to juggle all the things he/she is having to do. I wrote down all the things I do; carer, personal hygienist, hairdresser, cook, cleaner, secretary, driver, apointments, gardener, enabler for pretty much everything and he went bananas when he saw it but it worked because since then he has held his tongue.! I didn't like doing it but I was at the end of my rope. I'm happy to do these things to assist because I care and am not looking for thanks for every little thing but being ordered around and disrespected is another thing. That's my two penneth for today..apologies if I've gone off point a bit but when you break it down, the reality of it shows how hard it is for both parties x

  4. #14
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    Thank you for explaining it Pen.

    That doesn't sound very fair to me. Do the wealthier neighborhoods have better NHS packages for their residents ? Do people purchase their homes based on the better Post Code Lottery? Where does the money come from to pay for it all, property taxes ???

    So basically a person is at the mercy of the Post Code Lottery of where their home is located ??

    We are at the mercy of our insurance companies, but of course the better plan of health insurance a person choses the more coverage they get, but of course the more we have to pay for it out of our paychecks, and it's far from cheap.

    Our kids get cut off our health insurance plans at age 26, so if they don't have a job that provides them with health insurance benefits they have none. Which means if they need to see a doctor they have to pay the full cost out of their pocket. Without health insurance doctors can charge whatever they like. Specialists start at $200 a visit and up. So basically in this country you need a job that offers health insurance, if not it's good luck to you.

    xox
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  5. #15
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    Boiler - great idea with the list of things you do. I might try that, although I don't actually do that much care giving these days, just help out. But there was a time when I was utterly snowed under by it all.

    cc - The post code lottery isn't that cut and dry, and not like moving somewhere so your child can go to a better school (which happens a lot over here).

    Overall, the NHS is pretty good, and much better than the US system, which is overpriced and dependent on insurance, as you say. If you have money in the UK, people tend to get private health insurance in addition to the NHS. The way it generally works if that if you get diagnosed with something, and the hospitals says their next available appointment is 6 weeks away, you can claim on your private insurance and be seen by the same doctor, who also works in a private clinic, within a week.

    I have a neurologist I've seen both on the NHS and privately for my migraines. The NHS appointments were pretty typical: go to the hospital, wait in a large waiting room for a 10-15 minute appointment, which are more or less on time. The private appointment was very different. Was in a smaller, private hospital, nicer seats in the smaller waiting area, offered coffee & tea by reception, then a 30+ minute appointment, where the doctor wasn't hurried and didn't make you feel rushed.

    I know the NHS can get some bad press, but actually the upper levels of government are to blame for underfunding the NHS in a goal to make the UK more like the US. But underfunding the NHS, people will support the plan to privatise it, which will raise prices and reduce quality. If they just funded it properly, we'd have an amazing service, because, generally, the people treating you are pretty awesome and do their best. There is a lot of pride in the NHS, and rightly so.

    Pen
    Hanging in there, one day at a time.

  6. #16
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    Hi Pen

    It sounds a little confusing to me because you have free health care yet in order have more coverage or better coverage you need to pay for the additional private one. Why not just have private health insurance or make it fair and allow everyone to share in the same NHS health benefits, and make it the very best for all instead of the area a person lives? It sounds risky to me not knowing the kind of care a person is entitled to dependent on where their home is located. Are people informed prior to purchasing their homes the kind health benefits that come with it ?

    Bernie Sanders says your health care is better too, but Americans are led to believe, and maybe very misinformed that if we have socialized medicine here we will be waiting, and waiting to see a doctor, a specialist or to have diagnostic tests done.

    I can call my doctor, and be seen the same day if need be. Specialist maybe a week at most unless the particular specialist is in very high demand. We also have walk in doctor offices, and it seems like there is one every few blocks where no appointment is necessary, but insurance is or again without insurance will be seen, but will pay all out of pocket costs.

    If Americans are told they will have to wait weeks or months to see a doctor they will continue to oppose a National healthcare system…but maybe that’s exactly what the government, insurance companies, and pharmaceutical companies want them to believe.

    CCxox
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  7. #17
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    Thanks everyone for your replies, i think our problem at the moment is that we have so many different carers that Martin doesn't feel confident with them so limit what he asks them to do, we have got chc assessment this week so hopefully will go ok and we can try to sort out regular carers. Trying to get night sitters as well twice a week.Thank you once again, the best information comes from those that are going through it themself.

  8. #18
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    We have no outside help at the min, we care for our daughter (we being her husband, her parents and parents in law and her good friends) she has two children 8 and 16 months so all their care, housework, and my daughters care all done by us.

  9. #19
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    Jaxx - my heart goes out to you. Best advice, get outside help. Even a little. Will make a huge difference for everyone.

    eurocamper - good luck with the assessment. Don't let them push you around.

    cc - I'll try and explain it better.

    The NHS is good, but like with anything, is better in some places and not so amazing in others. I loved the doctors office (called a 'surgery' here in the UK) where I used to live. I got on really well with one of the doctors, and always made my appointments with her. They were a modern surgery, and everyone there was good. A couple years ago we moved to a different city, and I sometimes feel like the surgery we're at now is still stuck in 1970. Some of the doctors there are really good, but one is totally rubbish.

    The general rule of thumb is that if you phone between 0800 and 0830, you can get a same day appointment with a doctor or nurse. More so at my old surgery, where they were well staffed. This one is a bit more difficult as they seem always under staffed.

    We do also have walk-in centres, I know of 2 in this city, but there might be more.

    Hospital visits can be quick, or slow, depending on the department. When my housemate was referred to Neurology for her initial appointment, we were told it might take a week or two to get the appointment. So we called our private insurance, who started the process of getting an appointment the very same week. But, the NHS came back to us the same day with an appointment the following Monday, so we went with the NHS. We would have seen the same exact doctor, just in a different location.

    My housemate has been trying to get an appointment with Urology, and when I phoned a couple weeks ago, the waiting time was 48 days. They contacted us last week, and she got an appointment for 27 Nov.

    Last Christmas, I found a lump in my breast and got a same-day appointment at the surgery to see a nurse. She did an exam, and referred me to the hospital. For cancer, they have a 2 week target, and I was in the hospital the following week, or maybe 10 days...? Regardless, it was quick. Turned out to be a cyst, which they drained there and then. I was really impressed with the service.

    But, for things like hip replacements, people can wait a long time.

    It all depends on what the condition is, much like in the US.

    And, I know we call it a 'free' service, but we do actually pay for it. It's just that it comes our of our wages like a tax. And if you want an assurance that you will always get a faster service, you can pay for private healthcare. I think I was paying around 90 a month for both myself and my housemate's private insurance when we had it. I've had private insurance 2 or 3 times in the last 10 years, and have never used it. Granted, I don't get sick often to start with (knock on wood).

    As far as the post code lottery thing, it's not that big of an issue for most people. I've never heard of someone moving to find better medical care, but it might happen. There are a few times when it makes the news, like one county offering a better drug for cancer than a neighbouring county, although you see it more across the border with Scotland and England than anywhere else. My impression is that the Scottish NHS is better than England's NHS.

    I'm not a big fan of the hospital where we used to live, but we love the hospital where we are now, and the staff there are fantastic! But, don't go to the emergency room if you can avoid it. We went shortly after Christmas. Waited out in the ambulance (with 11 other ambulances) for 2 hours, then waited in the hallway for another 3-4 hours, then finally got admitted, and waited in A&E for 8 hours before being sent home, at which time the issue largely resolved itself.

    The problem the UK has, and why the NHS is struggling at the moment, is the government is underfunding it and has frozen pay raises for several years now, or made nominal pay raises of 1% or something stupid like. I know hospitals where the staff car parking fees went up more than their pay. So the NHS is really under staffed, and everyone is stretched to their limit. The current government is trying to get the NHS to fail, so they can sell it to a private firm (most like Richard Branson). Then the people in power will fill up their bank accounts and bankrupt the common folk with medical issues.

    If the government ran the NHS better and funded it better, it would be freaking amazing, and the world would use it as a model for good health care.

    Not sure if that explained things any better or not.

    When I was stationed in the UK with the US Air Force, I wasn't impressed with the NHS either, and believed all the hype that the US has a great health care system. But, I was in the military and got free health care, so it wasn't a fair analysis. Now that I live here and use the NHS, and used to work for the NHS for 10 years, I'm pretty impressed with it.

    I remember living in the States and having to budget my money in order to buy my son's Ritalin. It was seriously expensive, and that was 20 years ago! In the UK, we pay 8.40 (I think it is) for every prescription, no matter what it is. I get migraine tablets which cost 36 each. My housemate gets a medicine that costs 60 for each pill - but we only pay 8.40 for the entire prescription. Today, I picked up 24 tablets of my migraine med - 24 tablets x 36 = 864. I pay 10 a month for a pre-payment card that allows me to get as many prescriptions as I need. So those 864 worth of meds cost me 10.

    And because my housemate has MND, she gets ALL her medicine for free.

    Pen
    Hanging in there, one day at a time.

  10. #20
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    Hi Pen

    Thanks for taking the time to explain it in more detail.

    I think Americans believe they have the best healthcare because we pay so much for it.

    Yes so true our prescription drugs cost an arm, and a leg here.

    I don’t think we will be seeing Universal Health Care for all any time soon.

    CCxox
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