We all know the saying, no doubt we have used it time and time again, I know I have even said it out-loud to a couple of people and with the rising cost of living it sure becomes harder and harder to not say it on a daily basis. I am sure all of us at some point in time have had to make a choice on which bill to pay, if we can afford that extra item in the shopping basket, if we really can justify that new t-shirt or a day out. Some people may have faced even harder financial hardship where it becomes a daily battle to have food in your stomach and a roof over your head….. it seems to be something that everyone at one point in life can relate on some level, yet it is almost unspoken about in relation to the costs of being chronically ill.
In the UK we are very lucky to have the NHS to help, we don’t have the added pressures of medical insurance, spiraling hospital bills from numerous admissions, out patient appointments and for a lot of us the specialist fees. That being said, the cost of being ill is pushing people more and more into poverty, privately fund-raise and sometimes make a choice of trying to have a “normal life” or paying a bill.
So as if it wasn’t hard enough dealing with the impact of having something that is life changing, we also have to find a way to afford to be “sick”.
With the costs of NHS prescriptions at £8.60 per item, medication alone can cost £100’s each month, believe it or not… inhalers are not free, neither are my medications for the nebulisers, or the other medications I need to take to stay alive…… yep we don’t understand either.
Add into this the cost of some life saving machines we need, now I would like to point out that the NHS does provide some of these on loan, depending on the Local Authority, HOWEVER, if you need more than one to save you moving them about, such as a nebuliser in a couple of rooms you will have to buy these yourself. Sometimes the NHS authority cannot afford to continue with a certain machine, such as a compressor (which take up less room) and they replace them with cheaper Oxygen Tanks, so again you will have to buy the machine. These machines cost any place from £50 (Nebusliser) to £200 (cPAP) to £4000 (Oxygen Compressors), this also doesn’t include the costs of the masks, hoses, upkeep and other items you need for the machines alone.
On top of the machines and medicines we have additional equipment that makes our lives easier or well … what the NHS provides isn’t suitable. So an NHS wheelchair for instance is really heavy and well, quite old and clunky, it is almost impossible to move it yourself or can be too hard for someone else to push you in. We have profile (hospital type) beds as we have to sleep often sitting up or our side conditions mean constant aches and pains. Then we have clean air filters which have to meet certain criteria and meet. The list can go on and on depending on what side conditions we have with our asthma, which means thousands can be spent just to have the basics we need to live any kind of life.
In fact I totted up my machines I have 4 mains nebulisers, (1 at work, 1 in the bedroom, 1 downstairs and 1 that is an international wattage one). 1 portable nebuliser, a cPAP machine, Static Oxygen Compressor, wheelchair and clean air filters. At some point I need to buy a second (and maybe third cPAP machine) and I will need to buy a portable compressor ** le sigh ** and a new static one as the one I have is so big and bulky (thanks NHS) its taking over. For the machines I have already, they hit around £4000, where I have another £5000 – £6000 to spend on them….. I don’t have a profile bed, but it is getting to the point I need one which means finding another £3000 (to have a bed that doesn’t look like you are in hospital) so you can see, I am pretty lucky, others have to fund 10 times more items than I need.
With those cost alone its a real hit on the pocket, most people are on long term sick leave, or even if they are lucky to be able to work (I count myself lucky to be able to have a job), frequent periods of extended sick leave means you can spend a lot of time on Statutory Sick Pay which at £89.35 a week, would not even cover someones bills, never mind rent/mortgages, medications and foods.
You can only imagine the strain on individuals and families. Its a known fact that those that are chronically ill are often so heavily in debt it is another stress that they don’t need whilst trying to battle an already demanding fight. Most people don’t know where to turn, how to ask for help and end up in a lot worse situation because of it all. Imagine having to try and choose paying a bill or buying a machine that will make your quality of life better? imagine having to try and pluck up the courage to tell friends and family you need financial help, imagine having to battle day in day out to be able to eat and have medication.
This week the bloggers on http://www.easywheezybreathy.com will be focusing on areas of funding you may not be aware of, a lot of people don’t realize that having a form of Asthma (and many other chronic illnesses) can be a disability. We will be covering areas such as PIP- what it is, how to apply and some tips, other benefits such as freedom passes, parking schemes, pre-pay certificates for prescriptions along with some charities/grants we are aware of that can help with costs. Most of us where not aware of schemes or items we could be eligible to, never mind how to go about starting to claim them.
We will also be highlighting some key campaigns which are helping to not only draw attention to the issues surrounding the hidden costs, but trying to change them. Showing that yes, charity may start at home, it shouldn’t stop there. We can all come together by sharing information, resources and by speaking up to help get things changed.
We hope you come and join the FaceBook Group and continue the discussions. Not only that if you have any advice, know of any funding we don’t cover or know of any charities than can help, then please do get in touch with us.