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Thread: Respiratory problems - any suggestions?

  1. #1
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    Respiratory problems - any suggestions?

    A long standing problem has recurred with a vengeance, leaving me in real trouble and possibly not far from hospitalisation. As there are no easy solutions, I though I'd open this up to the collective wisdom of the forum.


    My condition is poorly characterised, but is regarded by the doctors as falling most likely in the neuromuscular domain, with problems affecting both my nerves and muscles.

    A particular feature of my problems is a markedly diminished cough reflex, as well as an incompetent cough - if I make myself cough the typical sequence is cough (of varying quality - sometimes reasonably decent, sometimes fairly ineffective), huff, snuffle, nothing. This means I struggle to clear my lungs at the best of times, am more prone to respiratory infections and, when I get a respiratory infection, I'm really ill. I've had pneumonia twice in recent years.


    I'm not quite sure what has been happening with my health in the past 48 hours. It has all the hallmarks of sinusitis, including extreme pain if I press on my cheek bones, though I'm unclear whether the cause is infection or my hay fever going crazy. If it's infection, I would guess at a viral infection, as my nasal discharge is clear and runny, not anything suggestive of a bacterial infection.

    Unfortunately, this has given me a pronounced post-nasal drip - I can tell it's running down my throat as I have the sore throat from hell. Put this together with my fairly useless cough and my respiratory system is in trouble - I'm noticeably wheezing when I breathe in or out (worse when I breathe in) which suggests bronchial involvement, and I have that ominous heavy feeling on my diaphragm that I remember from previous episodes of pneumonia (probably due to the extra breathing effort from the bronchial obstruction). Despite my posting history today, I feel like death and am really struggling to keep any sort of focus. The tightness around the base of my chest is sending my muscle spasm crazy across my head and trunk, making me feel worse still.


    I did quite a bit of work with a respiratory physiotherapist at the local hospital a few years ago, who felt I was an excellent candidate for a mechanical insufflator exsufflator, otherwise known by its trade name of CoughAssist. This is best described as a respirator that sucks as well, though it's for intermittent rather than continuous use. It blows your lungs slowly full of air then sucks quickly, creating the nearest equivalent to a cough. The idea is that you give you best shot at a cough as the machine switches over to suck, and the suction helps clear your chest.

    She got me a loan machine from the manufacturer and managed to beg a suitable breathing circuit from somewhere. The treatment worked very well and my breathing was much better, but the machine was only on a week long loan. We were not surprised, but still very disappointed, that the then PCT refused all funding for this treatment saying the cost effectiveness was not proven.

    Amongst the pool of patients she put forward, I was the unusual case that needed this support long term - mostly, the need was for short term use after certain types of infection, surgery or accident, also in the terminal stages of certain respiratory illnesses. Because of my neuromuscular problems, I can't bear manual cough assistance where someone pushes on my chest, and no improvement is expected to my cough reflex and chest muscles. The physio tried arguing that my chest problems were so severe that admission to intensive care was likely if I got pneumonia again, but her viewpoint was rejected, especially as we'd managed by a combination of good fortune and ignoring quite how poorly I was to keep me out of hospital during previous bouts of pneumonia.


    Being a bit blunt about it, I've accepted that respiratory problems may well kill me in the end - they are the end of a significant proportion of people with neurological conditions. However, I'd rather not go just yet, especially not over something for which an effective treatment exists.


    The problem with cost effectiveness is primarily that this treatment is expensive.

    The technology is patented, which means Philips Respironics are the only supplier of the equipment and will be the only supplier for years to come. This means monopoly pricing applies, also there is very limited if any availability of serviceable second hand equipment. When the physio and I looked into this a while back, there were two models of CoughAssist machines available - a completely manual one (set the pressures and flick it manually between blow, neutral and suck) and one with manual options as well as a timer/sequencer (which turned out to be useful in my case - you can set a repeating cycle of rest, blow and suck). From memory, at the prices a few years ago, the cheaper machine was around £6000 and the more expensive one touching £7000. There's now a new generation of machines with intelligent treatment cycles based on monitoring respiratory parameters, resting heart rate and SpO2, which I guess are arguably more suitable for arms length treatment in the community. Prices will likely have gone up as well.

    On top of the purchase price for an asset with a usable life probably somewhere in the 5 year range, you have the ongoing servicing and maintenance costs, which I understand is somewhat similar to, but more expensive than, the servicing and maintenance needed for a conventional IPPV respirator.

    The alternative to up-front purchase and paying for servicing and maintenance is to rent the machine with servicing and maintenance included. Unsurprisingly, I gather this is not cost effective for someone who needs this support permanently - the rental package is designed for periods of up to a few months, either to support one patient (as a trial or for short to medium term use) or if a hospital needs an additional machine temporarily.


    Whichever option is used, there's the cost of tubing and masks, which I gather works out at over a hundred pounds a set. The cyclical nature of the machine and the suction applied means you can't get away with cheaper CPAP tubing. You need a proper respirator filter and tubing, together with a valveless mask. There's not a lot of point sucking through a standard respirator mask, as the valves will open exhausting the suction to the atmosphere!


    I certainly haven't got the money to lay out £6000 plus every 3-5 years, plus at least £1000 a year in maintenance and consumables. That's at least £3000 per year if you depreciate the machine straight line over 3 years.

    So far, my 'do nothing and hope' (i.e. ostrich) strategy has been OK. Tonight, I'm in trouble - I don't have a pulse oximeter and I'm glad I don't as I'd probably scare myself. If I feel much worse, I'm going to have to call an ambulance, but I'm going to try to hold on until the morning when there's a hope of getting hold of medical staff with some familiarity with my case. At least I've got a profiling bed so I can sleep largely upright. My family tell me I look dreadful and I certainly feel dreadful.


    Whatever happens this time, this is telling me I have to have another go at this. Clearly, one option is to try the CCG's process for funding exceptional cases based on this episode. If that fails, really my only option is to look for charitable support, and that's where I struggle. I'm hopeless at asking for things for myself and tend to think of twenty reasons why others are more deserving. That, of course, is nonsense - I've sat on grant awarding panels for various charities, and I know it's a case of weighing all the factors before deciding where to use the funds.

    I know that I'll need to get an unconditional letter of support from the respiratory physio, together with an outline of the costs involved. I'm sure I can arrange for that.


    I'm aware of the various grant directories, but would welcome any suggestions or thoughts as to how to go about this. As I'm a law undergraduate, it's possible some of the specialist legal charities will help, though I would expect I'm probably too far down the pyramid to qualify (I'd expect them mostly to be limited to current and retired practitioners only, with some extending to those in the vocational stages of training - I doubt many cover those in the academic stage of training). There are a couple of possible leads based on institutions I've studied at in the past, which I can follow up, but beyond that I'm fairly clueless as I haven't done this sort of thing before.

  2. #2
    Senior Member acheron's Avatar
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    Hi Flymo so sorry to hear of your struggle

    I don''t know how to help you I only wish I had the money and I would buy it for you
    but please get help tonight if you feel like this I had pneumonia and it nearly finished me off don't put yourself in any danger

    so wish I could do something for you (hugs friend ) and when you are feeling better please fight this get on to any and every charity you can think of get on to your MP shame the bloody NHS and go to the papers anything life is worth so much more than a few pound

    sending you love and best wishes Acheron xx

  3. #3
    Senior Member Lighttouch's Avatar
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    Hi Flymo, well buddy - the lengths you’ll go to just to try to gain admission to hospital just to taste their apple pie.
    Avoid hospital. The fact that at the moment you aren’t coughing up green flem could at least mean you haven’t caught an infection. You know you have to be fit to enter hospital with all those bugs flying around - avoid at all cost.


    Runny nose relief. Ask your parents if they can buy Contac Cold from the chemist as that dries a runny nose. http://www.drugs.com/mtm/contac-cold.html


    I can imagine that you are feeling rubbish and at death’s door when breathing is hard work.


    Coughassist. If you’re going for a machine then go for the £7000 model that meets your needs. Additional ongoing costs of about £1000 pa for service and maintenance plus tubing and masks. http://www.healthcare.philips.com/ma...st/default.wpd


    Charitable grant
    Grants are readily available to not-for-profit organisations and charities but are more difficult to find to fund individuals for equipment costing £8000.


    So perhaps a way forward would be to choose a charity that could fund your Coughassist through an organisation that makes a business case for one but can be used by you.


    The Henry Smith Charity could fund your Coughassist if a good business case was put forward but you’d need to apply through an existing organisation as individuals can’t apply - just a thought. http://www.henrysmithcharity.org.uk/what-we-fund.html


    It might be a case of applying to a number of charities and adding some yourself and from family and friends. Put me down for a £250 contribution if it helps.


    Alternatively I wonder if there are local organisations local to you who could charity raise on your behalf. Appeal to the ‘Lions’ or Masons who love good deeds for a worthy cause. Set up a twitter account with a Just Giving Link and try to appeal to celebrities who ‘like’ your twitter account to get more people to view your page highlighting your illness. I know it sounds far fetched but if everyone contributed £5 you’d only need 1600 contributions.


    I really hope you realise that you have the support of members from this forum on your side and we are there to support you.

  4. #4
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    Dear Flymo a post from a very occasional member of these forums. This is upsetting to read, there will be a huge swell of support here for you and many of us would love to support financially if you would like us to! Objectively 3K a year is a small amount of money to a CCG, especially if offset against hospital admissions. As Light says there will be the some way forward to fund this for you, but first you need to get over this unwellness. Good luck today with finding some sensible medical help, then we will do whatever we can to support you in finding a way forward. You are much appreciated.
    Last edited by Fliss; 09-06-14 at 06:50. Reason: Typos

  5. #5
    Senior Member deebee's Avatar
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    I wish I could offer some advice but cant, so I am sending a hug and hope you feel a bit better today and do hope you find a long term solution x

  6. #6
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    Thank you all for your kind and generous thoughts.


    I'm still breathing - a little less wheezy than last night as I got some sleep, but I'm desperately tired and my pain levels have shot off the scale. My diaphragm is particularly tired. I'm getting more tired every day.

    I have already arranged for a home visit from one of our GPs later today. If I've read the situation correctly, all they can do is document what has happened, but that will be important in relation to getting something done about the underlying problem.


    As you rightly say, Fliss, £3k pa is small change to a CCG.

    I used to be a full member of one of the locality boards of our CCG, so I know many of the senior figures (including the chief executive and two other main board members). I also know most of the senior locality staff and one member of the exceptions panel. None of this really helps me, as if my case was brought up for decision, anyone who knows me personally would have to declare an interest and disqualify themselves.


    The wider picture is that it's hard to demonstrate a business case to commission a genuinely new service, especially with the current imperative to save money. Expensive new treatments such as mechanical insufflator exsufflators are particularly tricky to get funded, as there is little data on cost effectiveness and there are none of the political considerations that apply to new cancer drugs.

    If this device were supplied by the NHS, it would probably be as part of ongoing hospital supervision. There's some bothersome local problems to do with too many hospitals after too small a pool of work. The ultimate outcome is likely to be a major reconfiguration of services to which the hospital in question is especially vulnerable. An attempt by their respiratory team to get a new service commissioned could be viewed as this hospital coming up with an excuse for a bigger slice of dwindling funding. I suppose a partial answer to that would be for the equipment to remain CCG property, with the service elements of the package supplied by or through the hospital.

    In an exceptions context, the situation is "chicken and egg" - it's hard to prove a risk of expensive hospitalisation and poor outcome (especially the pine box variety) exists when I've managed to avoid being hospitalised with respiratory problems. Of course, I don't want to be hospitalised just to prove a point.


    As I'm brainstorming, I realise one person I particularly need to talk to is one of the senior doctors at the local hospice. She's a friend who may well spot my post on Facebook - if not, I'll contact her directly, as she may have some ideas on what to do and who to talk to.


    I've had a phone call from a close friend this morning with a valuable note of perspective. She reminded me that one of the hardest things of loving me sometimes is that people can't do anything to help, so if this turns out to be a situation where I can be helped, there is pent up willingness amongst people just waiting to be released. She also reminded me that one mutual friend is just waiting for an excuse to parachute jump - so maybe part of the solution if we can't get NHS funding is to throw him out of a plane, attached to a parachute and instructor, of course.


    acheron - your generosity of spirit moves me deeply. Realising how much people care is a positive outcome of a difficult situation


    Lighttouch - I always value your analysis of situations, not least as your skills are complimentary to my own. I do know a few people involved in Lions and Rotary locally, who could prove helpful if I need a "container" to host a fundraising project for me.

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    Senior Member firebird's Avatar
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  8. #8
    Senior Member galeforce81's Avatar
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    My thoughts are with you Flymo and sending you virtual hugs and hopes for a speedy recovery.

    Glad you've managed to get a home visit with your GP. I was hospitalised for a week with pneumonia and know how bad it can be, so i hope this isn't leading up to it.

    Can't believe you're still thinking of others so much still. Take some time out and think of yourself. You deserve it.

    Really hope something can be sorted out regarding the medical equipment. If only you can get it into their heads how much money they'll be saving, by you having it.

    Maybe it's time for you to go to the hospital/A&E the moment you need to, rather than soldiering on. Especially if it helps to make them realise how important the machine is and that it will benefit them as well as you.

  9. #9
    Member Fieldymouse21's Avatar
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    Dearest Flymo i was very saddened to read your post. Unfortunatly i dont have any advice on the subject all i can offer is to wish you a sppedy recovery and my very best thoughts and wishes sent your way. You are such a considerate kind and helpful person to all on this site and i'm sure i speak for all in sending you massive ((((( HUGS )))) xx

  10. #10
    Senior Member acheron's Avatar
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    Hi Flymo glad you feel a little better

    please let us know if you do want to try and raise money I would love to support you any way I can as I'm sure others would as well xx

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