STUDENTS - Useful contacts & information
As well as the standard loan, which all stidents are able to apply for, there are several other benefits you may be eligible for.
Contact your LEA to find out about getting assessed for a Disabled Students Allowance (see below).
There are additional trusts and funds set up all over the country. When Emily got to Bristol University, she learned about the local comfort fund, so look around your area to see what is available.
Talk to your social worker who is attached to your hospital (if they have one). They will have far more knowledge about help you can claim for, and are trained at filling in the tricky forms.
Did you know? Some CF Social Workers are not funded by the NHS, but by charities such as the CF Trust!
Contact the Joseph Levy Memorial Fund (see below)
BENEFITS & AWARDS LISTING
Did you know?
Depending on how well you are and how much you are able to do, you maybe entitled to all sorts of benefits. Remember, your hospital social worker will have the best information.
Council Tax Benefit - This is a benefit to help you pay your council tax. If you pay council tax and are on a low income, you are eligible to apply. However, if you have savings over £16,000, you will not receive this benefit. Savings over £3,000 affect how much CTB you get. If you're a full time student, you won't have to pay council tax, likewise, if your partner is a student, you may be able to get CTB. (Partner being someone you are married to, or someone you live with as if you were married to them) Also, If you can prove you have a room in your house set aside completely for medical purposes you can get money off your council tax (although, I don't know how much.)
Disabled Students Allowance - When you start university, contact your LEA (Local Education Authority) and ask to apply for a Disabled Students Allowance, along with the normal loan students apply for. You will then need proof of your disability e.g. doctor's letter, (not a pot of sputum :p) then you will be assessed for your individual needs. The DSA could pay for things like taxi fares into university, photocopying, books etc. Well worth looking into!
Disabled Living Allowance - There are three rates, lower, middle and higher rate. Again, you will need to be assessed and fill out forms to determine which rate you are entitled to. If you ask for re-assessment, there is a risk you may lose the rate you are already on.
NB: From experience, always fill out the forms thinking of how you are at your WORST. Also, wording makes all the difference, remembering to add words such as "severe" and "frequent" will help.
Incapacity Benefit - You can apply to receive this benefit if you are unable to work, but to receive it, if you are over 20, you must have paid national insurance contribution and been unable to work because of sickness or disability for at least 4 days in a row. If you are younger than 20 (and in some cases, younger than 25) you do not have to have paid NI contribution.
Income Support - Contact your local Social Security Office and ask for an application form. If you are entitled to IS, you may also be entitled to Housing Benefit and Council Tax Benefit.
Joseph Levy Memorial Fund - Part of the CF Trust, set up to financially assist CF adults in their further education and careers.
Motability - If your mobility is severely impaired, i.e. can only walk less than 100 yards, you should be entitled to Motability. This comes in weekly payments, as with other benefits, or you can exchange this for a car on the Motability Scheme used by many Car Dealerships. You need to be in receipt of DLA at the HIGHER rate to qualify. You also get free road tax when in receipt of higher rate of mobility part of DLA.
Job Seeker's Allowance - This is paid if you are capable of working, available for work and if you are actively seeking work. You have to be under the age of 65 for men, 60 for women, and not working, or working less than 16 hours a week. You cannot usually get JSA if you are under the age of 18. People studying full-time cannot be in receipt of JSA. If you have paid NI contributions, you may be able to get contribution-based JSA. If you are on low income, you may be able to get income-based JSA, even if you have not paid NI contributions.
For more info, visit here!
Free Prescriptions - Entitled are the following:
People with Insulin-dependent Diabetes
Those who have an '-ostomy' e.g. gastrostomy, ileosotomy
Those on Income Support or Job Seeker's Allowance
Those up to the age of 18 in full-time education
Those who receive tax credits
Those who have an "indwelling fistula device" i.e. Port-a-cath, PASport etc.
Those who hold HC2 Certificate (Say you were a student, didn't have much savings, you could apply for an HC2 certificate, for any age!)
Blue Disabled Badge - Replaced old Orange Disabled Badge. People with limited mobility can apply for this badge. Pick up form in local Post Office.
Congestion Charge - All blue badge holders can nominate 2 cars to qualify for exemption from congestion charge in Central London.
Disabled Person's Railcard - Gives you 30% off cost of rail ticket, for you and one person accompanying you. You must be in receipt of the higher rate of DLA and it costs £14 for one year. Excludes you from travelling time restrictions. Contact your local DSS (Dept. of Social Services) for more info!
TRAVEL INSURANCE
Travel insurance is a tricky business when you have CF. You can risk getting standard insurance which normally doesn't include pre-existing conditions, but it is much more sensible to try and get full cover.
Normal insurance companies will quote ridiculously high amounts (One of us was once quoted in excess of £1000 for a week), although there are companies who cater specially for pre-existing conditions. Here are some you might want to try (although some of these have exclusion clauses such as a hospital admission in the last 6 months):
AIS - 0870 240 0143
Endersleigh Insurance - 0800 028 3571
Heath Lambert (within the EU only) - 01603 828 376
JD Consultants - 01689 859 102
The Post Office sometimes offers a good deal, but there are conditions.
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This section is to provide information on the equipment pwcf use for treatment.
"I've got gadgets and gizmos aplenty,
I've got whozits and whatzits galore.
You want thingamabobs? I got twenty!
But who cares? No big deal!
I want more..."
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BREAS |
Description:
For those who require ventilation assistance, the portable BREAS non-invasive ventilation machine is the tool of choice for clinicians. This is a machine which allows the clinician and patient to adjust ventilation requirement digitally, whilst providing continuous positive airway pressure (CPAP). There are various modes, depending on patient need, but the main function is to assist ventilation to provide the patient with a chance of living a more 'normal' life. |
Experience: Gary
One of the most annoying parts of hypoxia (low oxygen saturations, high co2 retention) for me was waking up with throbbing headaches. These would pound for a good while through the morning, and as much as I would try to deal with them normally, I couldn't, and ended up using paracetamol to reduce the pain.
Due to the number of mornings this was happening, I didn't feel using a painkiller each time was a wise idea. I spoke to my consultant, and a non-invasive ventilation technique was proposed. I tried various machines, the bird, NIPPY, and other CPAP and BI-PAP ventilators. I tried the BREAS as it allowed a lot more control, and at first, I felt when I had the face mask on, it was like putting your head outside a car window, and feeling the gust of wind into your mouth. It was most uncomfortable.
However, after about a week of playing with the settings and trying it overnight, it was comfortable enough to use for prolonged periods during sleep. More settings had to be played with to prevent the bloated feeling in the morning, resulting from the extra air being inspirated, which would then affect overnight feed intake. However, with the settings changed, this was soon overcome.
You get to choose how you use the machine, be it through a full face mask, a 'snorkel' which is a mask that covers only the nose, or by using a mouthpiece. I use the full face mask overnight (which uses straps to hold it on your face) and I use the mouthpiece during the day and during physio when I use the BREAS as a method to regain my breath, by controlling my breathing better.
The biggest obstacle with this piece of equipment is trial and error with the settings, as it's different for each person. But once the settings are correct, the headaches will go, and you will feel more energetic during the day, at least, this is what I have found. |
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The PEP Mask |
Description:
PEP masks are used to 'force open' obstructed airways, allowing air to move behind secretions and assist in mobilising them. They work by creating resistance, using a pressure valve. Breathing out against a resistance prevents the smaller airways from collapsing and therefore helps the movement of secretions. The treatment can be performed in the sitting or postural drainage position. It is done in cycles and it promotes independence for PWCF. |
Experience: Richard
I've used a number of physiotherapy techniques over the years; such as percussion, active cycle, tipping, autogenic drainage and just plain old coughing! A couple of years ago I started on a study to compare the effectiveness of a number of gadgets and methods for physio. At the end of the study I was given a chance to try a number of the systems out, including a flutter, cornet and PEP mask. I quickly realised that the PEP mask seemed to be easy to use and pretty effective. Above all, I could physio with far less coughing going on than most methods cause!
PEP stands for Positive Expiratory Pressure. The idea is that when breathing out through anything that causes resistance the way the various airways shrink as they empty is changed, which helps secretions stuck in the small airways shift into the larger airways. The PEP mask consists of a heavy-duty nose-and-mouth mask similar to those used by anaesthetists. Where an anaesthetic hose would attach, there is a simple valve system which allows the user to breathe in easily, but pushes back as the user breathes out.
Using it is easy. Clamp the mask over your face, breathe in slowly, pause, then breathe out against the resistance fairly quickly. The aim is to breathe out fast enough that a certain recommended pressure is reached inside the mask, and you need 5 minutes training by a physio with a pressure gauge to learn how to achieve this. After ten breaths, huff, clear your thoat and spit!
I find it incredibly easy, and far less hassle than most systems. Like all such things, the mask needs regular cleaning and occasional sterilisation, but is in no way a burden to maintain. I still practice autogenic drainage for use when travelling but I use the PEP for all my routine physio. |
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Nebulizer |
Description:
Nebulizers deliver a stream of medicated air to the lungs over a period of time. The nebulizer compressor pumps air into the vessel containing the medication (in liquid form), turning it into a fine mist, which can then be inhaled. |
Experience: Pete
I've used nebulisers for about 20 years now and have seen many shapes and sizes! It's a compressor, which passes air through a tube into a chamber which contains liquid medication. The air turns the liquid into a mist which is then inhaled via either a mouthpiece or mask. I prefer a mouthpiece as I tend to nod off with the mask on and wake up an hour later with a tired sounding nebuliser groaning away. It's not a large piece of equipment (about the size of the Yellow Pages) and can often be supplied with power adapters for use in cars/caravans etc.
My long term drugs that I use it for are Salbutamol (opens the airways), DNAse (helps break down the mucus in my lungs) and sometimes Colistin (anti-biotic for treating Pseudomonas). It can also be used for many other drugs including the rarely used Amphotericin for treating ABPA (it's like inhaling paint stripper but is very effective). Every nebuliser should be serviced annually to make sure the motor hasn't slowed down (you need the correct air rate for the drug to turn into a mist). They also start to sound a little like a diesel engine as they become tired. Don't even start me on the vibrations!!!
It's pretty easy. In fact it's a doddle. The only pain is having to take the time (about 45mins including preparation) to do it in the morning. I often use the time to read a book or prepare my day's work. After use it's a good idea to let it run for a minute or two to let any condensation pass out through the tube. Over all it's been very useful over the years, although I have refrained from giving them names as each one is only with me for a year (they are exchanged when they go in for service). |
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Gastrostomy |
Description:
Also known as a G-tube or a PEG, this device is inserted into the stomach to aid weight gain. Gastrostomys are often a long-term aid for pwcf who struggle to maintain their weight, but if a time comes where the device is no longer needed, it can be removed. |
Experience: Ozzle
I was cold all the time and getting more and more chest infections, I was very under weight and they first of all suggested NG feeding, which I tried as an in-patient for a week. The feeding was ok in itself, but I didn't like the tube down my nose. I did put on weight in that week but as I say, didn't like the NG, so the next option was a Gastrostomy (PEG) tube. To be honest the worst bit was the spray at the back of your throat it was disgusting!!! The surgeon was really really nice. I was sedated so I was slightly aware of the camera going into my mouth and gagging a bit when it was being passed down my throat. I don't know if they topped up the sedation drug but I didn't feel them putting the tube in place at all, thankfully, next thing I knew I was back in my room recovering.
I was starving, because I hadn't had anything to eat, but my stomach muscles were still sore. Eventually they gave me something to eat and I ate it too fast because I was so hungry and it hit my poor bruised stomach like a lead balloon. I was doubled up in agony, but it passed eventually with the help of a couple of hot water bottles! The only thing that was still sore was my throat from the camera. It's a bit strange, all of a sudden having this tube sticking out of your tummy, and I wasn't getting used to it at all. I asked my dietician if there was anything less "sticky outy" and she said that there is a button. A button I thought, envisaging something the size of a button on a cardigan and just as flat, so I opted for that.
Back down to theatre (had a tasty male nurse by my side this time!!) and the nice surgeon took out my peg and gave me a button instead. I wasn't quite sedated because I remember him telling me how to work the button. It has a balloon filled with water on the inside keeping it in, however I didn't like the button either, when my stomach moved as everyone's does it pulled the balloon and suddenly let it go and the button would be sucked in and all of a sudden jump back again, very annoying and slightly uncomfortable! So I opted to go back to the peg tube.
I have to say here that this was over a couple of years so by the time I decided to go back to the peg I was past my crop-top-wearing days! And also during this time I had put on a lot of weight. Peg tube back in, im feeding 1500 calories worth every night and when I'm at work, because I work over lunchtime and my work wouldn't give me an extra 15 minutes break to get some lunch (Very Long Story), I feed 750 calories worth at work. I'm the heaviest I've ever been and I don't feel the cold like I used to that's for sure! In August last year the Doc's gave my Fiance and I the go ahead to start trying for a baby! Wouldn't have been heavy enough to do that without the peg tube feeding. Anyway, on 19th July 2004 we found out that I was roughly 3 weeks pregnant, im now 12 weeks, and no morning sickness. I think that's because of the feed too, because I don't wake up in the morning starving cause I've been feeding all night. |
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O2 Concentrator |
Description:
If your CF team decide that you require frequent oxygen use (for example, overnight use) you will probably become the proud owner of one of these; an O2 concentrator. The concentrator works by extracting oxygen from the air and therefore allowing a concentrated amount to be delivered via a long tube, and nasal specs (or, if appropriate, a mask). |
Experience: Emily
In the Autumn of 2003 I was going through a really rough patch. I was ending up in hospital every few weeks because I had "hype-inflated" so much I felt I couldn't fit any more air in my lungs, and I was just exhausted from breathing. Then last October, after a sleep test and a few discussions, my team decided that overnight oxygen use would be beneficial. I was devastated, because to me that was a key "step" in the wrong direction; a marker that I was getting worse. However I agreed to it, and my oxygen concentrator was delivered a few weeks later. The machine was much larger than I expected and when it was first turned on, this stupidly loud alarm went off that filled me with horror; I thought it would emit that noise the whole time it was on! It turns out the concentrator only alarms for the first 3 seconds and then stops, so you know it's working properly. It is fairly noisy, but the noise is a rhythmic, sort of breathing noise, so it doesn't keep me awake. However I was advised not to keep it in my bedroom as not only is it fairly noisy, but it produces quite a lot of heat (waste energy) and so it's better to keep the concentrator in the hallway or somewhere like that.
Every 3 months, a nice man comes round from BOC (the company that supply the machine) and checks everything is working fine and takes a reading. That reading is how much electricity the concentrator has used and I get the cost of that reimbursed, woohoo! I also have a backup cylinder in my room, in case of a power cut (its stupidly large and I cant lift it so it sits gathering dust in the corner).
I have been using an oxygen concentrator for nearly a year now and I have grown quite fond of her and named her Claire (so called in honour of a very loud and annoying girl I know, so the name seemed apt) and "Claire the O2 concentrator" and I get on famously. She is actually very useful, for example whereas I used to come back from the pub horribly breathless and with lots of chest pain and suffer the next day, the repercussions of a night out are generally manageable! I also now I get a "break" overnight, and my lungs are able to work less hard and recover, therefore reducing the number of hospital admissions I have. So hurrah for Claire! |
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Port-a-cath |
Description:
A port-a-cath is an access device used for the administration of IVs. It is a closed system that is totally implanted under the skin (subcutaneously). The port is generally made of titanium and the septum of silicone. Ports are often suggested as an alternative to venflons and long-lines once the veins show signs of overuse and accessing them becomes difficult and painful. |
Experience: Laura
Since the age of 12, I had been on regular courses of IV antibiotics, which sometimes lasted 2 or 3 weeks. At around 13, the regular courses became monthly courses and as you can imagine, this meant that inserting longlines became an almost impossible task for the poor IV nurses who had to struggle with my stupidly tough veins! Many of them suggested that I have a portacath fitted and this soon became the topic of conversation for each longline insertion session.
I do my own IVs at home and have done for several years, but the fact that my longlines tended to block after several days meant that during a 3 week course of IVs at home, I would visit the hospital about 6 times for new longlines and sometimes canulas. Strangely, I wasn't too bothered about the fact that I was being attacked by needles every few days - it was the traipsing back and forth to the hospital and the fact that basically, I was running out of veins that finally made me consider having a portacath fitted.
My main concerns about the portacath were that it would stick out and EVERYONE would be able to see it, I wasn't keen on the idea of having a metal implant that would be inside me permanently and I was worried about it getting blocked or infected.
I had a long talk with one of the CF nurses at the hospital and she eventually persuaded me to have my portacath. She told me that I could have the portacath sited under my arm (underneath my bra strap) so that no-one could see it, and that the chance of it blocking or getting infected were very low. And even if this did happen - a simple operation would probably correct it.
I finally had the operation last September (at the age of 16). It was done under general anaesthetic and I was only in hospital for 3 days. I had my last longline inserted a few days before the op so that I could start a week's course of IVs to prevent any infections. There was no pain after the procedure - I had a local anaesthetic straight after and then I was prescribed Cocodamol (a strong painkiller) for the following week.
Two incisions were made - one under my right arm where the portacath sits and one at the base of my neck where the tubing of the portacath was threaded up between my ribs and skin and inserted into the main artery into the heart. The scars took a little while to heal properly but they're fine now - the stitches dissolved so there were no trips back to the hospital to have them removed. The portacath needs to be flushed every month to keep it in full working order and replaced every 5-10 years depending on your CF Team's protocols.
I don't regret choosing to have a portacath at all. It makes life much easier - which I'm sure all pwcf appreciate! For anyone who has difficulty with longlines the portacath is a real godsend and I would certainly recommend it to them. |
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PASport |
Description:
The PASport (Peripheral Access System port) is an implantable intravenous port made of a compressed self-sealing silicon septum encased in a titanium or plastic housing that is attached to a silicone rubber catheter. The port is totally implanted beneath the skin. A special type of needle, commonly referred to as a "Huber" or "noncoring" needle, that does not lacerate the self-sealing septum with insertion is used to access the device. Ports are usually designed to sustain 500 to 2000 punctures and are routinely placed in a subcutaneous pocket in the arm, enabling the delivery of IV antibiotics without constant need for venflons being changed in the arm. |
Experience: Katie
I remained very well up into my late teens only needing my first set of IV's when I was 18. From then on I had IV's between 2 and 4 times a year. Passports were something I was completely against. The main and very vain reason was because I liked to go out every weekend round the pubs and to nightclubs and I liked wearing strappy clothes. I was also very afraid of what any potential boyfriends might have thought of a passport.
Unfortunately though, I had a really bad time with longlines. Basically every time I had one put in I would have a massive panic attack. This was gradually becoming something that would take over my life, and I started to avoid treatment because of it. I would get dosed up to the eyeballs before have a line put in to try and calm me down but nothing worked. Some attacks were so severe I had to be placed on oxygen.
Anyway the time came when I was 22. The longlines just wouldn't go in. I had no veins at all, and the thought of having IV's terrified me because of this. I had to bite the bullet and make the decision to have some form of Venous access device. I opted to go for a Passport as that is what is commonly used in Leeds.
The procedure terrified me and I confided in my doctors about this. They assured me they'd do everything they could to help me to remain calm. I went through the procedure with just a local anaesthetic. They gave me diazepam before the op and something else when I got to theatre. I don't know what it was but it was brilliant and I went to cloud cuckoo land for the full procedure, which took about 45 minutes.
I felt no pain throughout apart from a tiny bit of tugging. I was so thrilled afterwards because I made it through the operation and it was a complete success! I had it placed at the top of my left arm just below my armpit. I can honestly say I don't remember being in any pain afterwards. I did get random swelling in my wrist though, which is apparently very common.
I've had my port for three years and had no problems whatsoever. It has been a life changing thing for me as I no longer have any anxieties about having treatment and my health and quality of life have improved immensely as a result.
I would recommend having a passport to anyone who has anxieties about treatment or who has IV's more than once a year. And as for my vanity - I can still wear lovely clothes to go out in because there are loads of tops that cover up my port. Not that that matters anyway because you can hardly see it when its not covered up. |
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NG Tube |
Description:
The NG tube is a flexible tube made of rubber or plastic, which is passed down into the stomach through the nose, hence the name. The tube is passed and connected to a bottle of feed so one can drip feed into ones stomach overnight. Like a gastrostomy, it is used in pwcf when they struggle to maintain their weight, but it is generally only in place overnight and then removed in the morning. |
Experience: Anders
I'm now 26 and I've been doing nasal gastric (NG) feeding for 16 years. I've never been greatly fond of food, I've always felt that I've been forced to eat and I found it impossible to eat the required amount of calories that the doctors and dieticians wanted me to. I was so skinny my brothers used to call me xylophone ribs and when we fought they'd pin me down and play my ribs as if I were a xylophone - what kind brothers I had!
The doctors had been quite concerned about my weight and there had been talk of me starting overnight NG feeding. At the time, I knew what NG feeding was, I'd been admitted to hospital and I'd seen other older pwcf with NG feeding, so I wasn't alien to the concept. Although this may seem rather odd, I was actually quite keen to start NG feeding, I'd spent a lot of my time being called skinny and being force fed food, in my mind NG feeding would be a great way to put weight on.
When I started NG feeding they admitted me into hospital to ensure I was used to the technique of passing the tube. They told me to put the tip of the tube at the tip of my nose, run the tube down to my belly button and that would be the distance I'd be required to pass it. I taped up the point where the tube met my belly button to act as an indicator for when to stop passing it. I had a glass of orange squash set aside to help swallow the tube when it got to the tickly part of my throat and I was ready to attempt my first passing of the tube. The process was (and still is) very quick, I passed the tube 6 inches, took a quick swig from the glass and continued to pass the tube all the way until I'd reached the required distance. The whole process was much easier than I thought, it was quick, it wasn't uncomfortable and I didn't gag.
When I went home and started NG feeding it was rather odd. For the first few months I'd always be at home passing the tube, so the only people that saw me with the tube in were my immediate family. My parents made no fuss over it, but my brothers (especially my eldest brother) constantly stared at me. I also had friends stay over and occasionally I'd take my feed out to the street if my friends were playing, they too were curious at first, but then after a while just treated it as normal. However, if a member of the public saw me, they'd just stare, but my friends and I just laughed at them and their awkward behaviour. I was self-conscious at first, but as people got used to me having it in, the less self-conscious I became.
I have to admit there are many days I wish I didn't have to do it, but I could say that about any part of my medication, nebulisers, physio, whatever...but if I didn't do these things my health would be so much worse.
NG feeding has been really helped my well-being. In fact even now, 16 years after I started I'm still on it. In the last year or so I've moved my bmi from 19.0 to 22.0, this put me in the 'normal' range. I should point out I had a years off feeding here and there, and as a student I wasn't fantastic at doing feeding. I would recommend feeding to anyone, it'll make you feel stronger; it will probably help you fight infection and help you stay away from IV's. It's a lot easier than you'd imagine it to be. |
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