I was having a look at the CF forum mainly because I wanted to see if there was any news on someone I met in the RBH anyway I came up with these 2 things:
If you have a port-a-cath you can get free prescriptions - it counts as a fistula apparently
If you get DLA the rules have changed regarding hospital admissions it used to be if you are in for 4 weeks after than you lose DLA whilst you are in now they tell you inform them everytime you go into hospsital. Apparently they now allow you to be longer. I will be instersted to see how this affects those who do amino 6 weekly cycles, I will call them when I go in on Thursday and see what they say!
Thanks for that information about ports a free perscriptions. I have a port but was unaware of this i now get free perscriptions anyway but it's something worth knowing. Best inform the dla also as i've just come out of costa but never received notification from them about that.
Thankyou.
i have had many ports over the years for asthma and never got free prescriptions. I have had a fistula (the same as renal patients have for iv access)for rapid iv access for five years now for my asthma and still dont get free prescriptions. Maybe its just a cf and renal regulation???
Meant to say i hope i dont qualify as i am going to look pretty stupid for the past 10yrs or so!!!!! LOL But thanks for the info X
What are Ports?
Re Ports, a port is a portacath it gives access for those whose veins are totally shot and who need regular and fast access.
The free prescritptions is correct, it is not a CF thing, I found it on site about prescriptions as well.
Am shattered will look up detials tomorrow.
Bex
portacath
Hi Everyone
I'vebeen waiting for a port since febraury so find this topic interesting so I have found this if you read about half way down you will find a statement saying that perscription are free if you have a portacath fitted
Information
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Physiotherapy Techniques
NB: The following information is not guaranteed to be medically correct.
Follow links below for medically precise info. Back to top!
Postural Drainage
This is used in conjunction with other breathing techniques; it is the positioning of the body to allow gravity to help loosen secretions.
Autogenic Drainage (AD)
This technique uses breathing exercises; the idea is to do several deep breath cycles, and then to breathe at different volumes (take different-sized breaths) to mobilise the secretions and move them upwards. There are three phases - Unstick, Collect and Evacuate (breathing at low, medium and high lung volumes to mobilise, collect and expectorate secretions). This technique is generally too difficult for young children but can be highly effective in older PWCF. It has been found to work well in people with wheeziness and tightness.
Active Cycle Breathing Technique (ACBT)
This is made up of a combination of deep breathing exercises, breathing control, and ""huffs"" (forced expiration to clear secretions). Active cycle differs greatly as it is adapted to suit each individual.
The Flutter
The Flutter is a small plastic device, which contains a large ball bearing. This repeatedly interrupts the outward flow of air, generating a ""controlled oscillating positive pressure"", which mobilises respiratory secretions. A Flutter session consists of about 10-15 breaths followed by huffing and breathing control. This is repeated for 15 or 20 minutes depending on the individual need.
The PEP Mask
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.
NB: PEP masks should not be used with a history of pneumothorax, or evident bullae on an X-ray.
The Cornet
The Cornet consists of a semi-circular tube containing a rubbery hose. Breathing through the hose (inside the tube) causes the hose to flex, buckle, and unbuckle, causing pressure to build up in the airways which fluctuates many times per second. The mouthpiece can be adjusted to produce the optimal effect. Use is similar to the Flutter valve. The device must be cleaned regularly, according to the manufacturer's instructions to avoid harmful bacteria and moulds from accumulating in the device, which could lead to lung infection.
Percussion
Percussion is performed with cupped hands over the area being drained. It is fondly known as ""beating"" and used in conjunction with breathing exercises. Each cycle usually lasts around 20 seconds followed by a pause. Percussion can be performed on oneself or by someone else, to help loosen secretions.
Physical Activity
Probably the most fun way to do physio, obviously to be used in conjunction with routine physio sessions! All physical activity, particularly walking, running, swimming and trampolining can be extremely beneficial in loosening secretions, not to mention strengthening lung muscles and improving general fitness.
Monetary Benefits & Rewards
NB: The following information is our attempt at finding out about the benefits and rewards we are eligible for.
For up-to-date info, contact your hospital's social worker or your local authority. Back to top!
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!
Good heavens Tas what a list but what a useful one. Good luck with your Port mine is going in at the end of my regular IV amino break which starts on Thursday, Hopefully I will have my normal uneventful 10 day break I don't really do drama apart from a quick trip to Sidney Street for a C line and going off randomly makes the whole admission hard, however July admissions have never been very good for me!
Hugs
Bex
Just phoned Dla to ask how long a child has to be in hospital before they need to be notified and was informed you now have to tell them about every admission!
For children (not sure about adults) anything over an 84 day admission will result in dla being deducted. Any admissions within 28 days of each other are classed as continuous. For example - if a child was admitted for 21 days and was then admitted 2 weeks later for a further 7 days but then needed to go back in again 3 weeks later for another 4 days this would count as a 32 day admission!
Hi Bex,
do you know when the rule changed regarding having to notify DLA of each and every admission? I remember calling a few years back to ask when I needed to tell them if Jay was in hospital and at the time you were only supposed to notify them if it was for a prolonged period, so I have never told them about admissions as they were never for more than a week.
I have just had Jay's renewal looked at, and yes I did write down the admissions he had had in the past 6 weeks, but got a rather stern call from DLA as his consultant report stated he's had a number of admissions to RBH and I haven't notified them about them. Jay has had Xolair fortnightly for 8 months (day admission) and had 3 courses of IVIG which involved overnight stays. I am assuming these are the admissions she is refering to as he has not had an emergency admission to Brompton this year. I am now concerned they are investiging the fact I haven't notified them and how this could effect me! I certainly hadn't been made aware the critera had changed from DWP and was wondering if anyone else knew this was now the case. I have asked a few friends who get DLA and none of them knew - I only found out from your post.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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