Doing a dry run test for London!

So yesterday and today I have been doing a dry run for London, meaning I have to try and stay up for at least 11 hours straight, without bad symptoms kicking in, to be able for my flights and trip to London on May 13th. Sounds easy right?… yeah! I am having trouble and I still have 3 hours to go today!! I usually last about 4 to 5 hours up before bad symptoms and desperate fatigue get in the way and I need to rest in bed again so I need to be able to do this to go on the trip.

The itinerary starts for the trip on May the 13th at getting up at 5am to check in on time and fly out for the 7:30am flight to London, then I have to make it to London and to the specialists appointment at 12:30pm and wont be at the hotel until at least 4pm, so that is 11 hours from getting up at 5am! Then and only then will I be able to rest for the first time on the trip. To anybody else this would be simple but not for me.

I got up at 9 yesterday and made it to 8pm last night, then watched The Expanse and then passed out cold in bed for a couple of hours, I really needed the sleep and symptoms had kicked in pretty bad throughout the day. I simply do not have the stamina and health like I did the first time I went to London so I decided to do another dry run of it today. I got out of bed at 10am this morning and I have to make it to 9pm tonight and I have to say I am finding it tough!

I have the tickets bought for the trip and I really don’t want to have to change or cancel them so I have to be safely able to do this without bad sickness and symptoms getting in the way.

If I do this successfully, Ill let you know, but, I am finding it hard and may have to change the itinerary around a little to be better able to compensate my physical needs, but hopefully that wont need to happen.

Here’s to the next 3 hours, let’s do this!!! (I hope!!)

Lette xxx – (Fainting Goat!)

Saturday Submissions – Switching Up My Life: How Gaming Helps Me Cope With Disability

Today’s ‘Saturday Submissions‘ guest post comes from the lovely Melissa over on the blog ‘AutisticZebra

You can also find her over on Twitter by the handle @TheAutisticZebra

Here, in the very first of our ‘Saturday Submissions‘, Melissa speaks about how Gaming has helped her to cope with her Chronic illness. If anyone knows me, they’ll know how much I love gaming, especially Nintendo, so I am quite jealous as well as being delighted for her with what she just picked up for herself and this post seems very appropriate to be the first of the Saturday Submissions!

Please enjoy and if you would like to take part in Saturday Submissions, please see below the post for further info.

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Switching Up My Life: How Gaming Helps Me Cope With Disability

“I turn forty next week. And as an early birthday present, I have just bought myself a Nintendo Switch. I will, of course, share it with the kids, but even if I didn’t have any kids, I’d have bought it. I never thought I’d get into gaming in my thirties, but here I am.

The Nintendo Switch box, plus The Legend of Zelda Breath of the Wild game.

I was never that into gaming as a child. We didn’t have a console and had limited access to games. The only game my dad ever bought us was a PC chess game. Somehow we ended up with two other games, Prince of Persia and one I think was called Leisuresuit Larry in the Land of The Lounge Lizards! Oh, and Tetris. And Solitare. So, a deprived childhood.

Original Donkey Kong Game

Original Donkey Kong Game

On the odd occasion that I’d be visiting a house where video games were played, I’d do my best to join in. This was how I got to experience Donkey Kong and a few racing games. And I did terribly. I could not understand the rules or controls or stand not doing that well. And being teased about it. And yet, I loved watching the others play. I admired the graphics and everything else that went into the games. I just thought they weren’t for me.

Nintendo Wii

Nintendo Wii

And then, in 2011, when I was the grand old age of 34, my son won a Nintendo Wii in the school Christmas raffle. He was four, and as he has since proclaimed: “that day changed my life forever”. He’s not the only one. We have since moved on to the Wii U, as well as two 3DS handheld consoles, and a laptop bought just for gaming.

Playing Life in Hard Mode!

Playing Life in Hard Mode!

The arrival of video games into my life happened to coincide with when my health started to go seriously downhill. And I discovered that video games are the perfect accompaniment to days spent unable to get off the sofa. They provide the ultimate distraction. On days that I can’t physically play them, I watch the kids play them and that helps with the pain as well.  They help keep my brain sharp. They are a fantastic way to bond with the kids, to enter their world. Especially as both my kids are completely obsessed about video games and hardly talk about anything else. It’s a real advantage to know what they are talking about.

Original Nintendo Consoles With Games

Original Nintendo Consoles With Games

And so, to put it mildly, I am hooked. I told my kids that my ultimate life goal is to play every game that Nintendo has ever released. They laughed and said it’s an impossible goal. I say nothing is impossible, and at least it gives me something to aim for!

Nintendo Switch Logo

Nintendo Switch Logo

And so, this morning, I picked up the just-released Nintendo Switch. To say I’m excited would be an understatement. I actually feel happy, rejuvenated, really alive. My pain has melted into the background as the excitement and adrenaline is kicking in. And as I wait here for the kids to get home from school so we can have a great Unboxing Ceremony, I can’t help reflecting on how gaming has allowed me to cope so much better with being disabled. And I’m sure I’m not the only one!”

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Thanks so very much to Melissa from The Autistic Zebra for giving us our first post for our Saturday Submissions guest blog post.

How do you distract yourself from your chronic illness? What hobbies and pass-times do you enjoy? Are you a gamer too?
Please leave a comment of advice or help for Melissa and others in your situation. Share your thoughts on how to take your mind off your illness.

Be sure to check out Melissa’s links above and show her some support 🙂

————- Wanna Be Part of Saturday Submissions? ————-

All you have to do is tell us a little about yourself and write a blog post in relation to your chronic illness, all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like
🙂

You can send your submissions to: irishpotsies@gmail.com

——————————————-

Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

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We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.
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After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

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Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Made The Longlist of The Irish Blog Awards 2016!

 

Littlewoods Blog Awards 2016_Judging Round Button_Longlist-1

WOO!! So not only did the Blog make the long list finalists for Best Health and Lifestyle Blog in The Irish Blog Awards 2016, but also one of my blog posts, ‘The Good, The Bad and the Emergency‘, made it onto the the long list for Best Blog Post!!

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I am delighted and I have you all to thank for adding your entries for the blog! I cannot tell you how much I appreciate it 🙂 From here on, as far as I know, The blogs will now be judged by a panel and then those who make it onto the shortlist may need to get votes for the remainder of the judging so if I ever even make it that far, I may be back to ask for some votes! :p

For now, Thank You all once again and I will keep you posted on how everything goes 🙂 ❤

Lette (Fainting Goat)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

9at8VqHyRMi4E9iScv0e_Nominate

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

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Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

Oh Dear! Spare a Few Likes!

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Hehehe! As you can see we are stuck on a funny number of likes over on the Facebook Page! If you have a moment, please click in and give us a like, Thank you! 🙂

While you are at it, check us out at these following links, I would love to hear from you 🙂

Facebook
Twitter
Youtube
Spreadshirt
Email

Drivers and Passangers With Disabilities Tax Relief Scheme

How awkward does something have to be? when it comes to the social welfare they don’t make it easy, that’s for sure.

We have done just about everything we have needed to do since I have become disabled, in order to settle into the new lifestyle that we have been forced into. However this Drivers and Passengers with Disabilities scheme, is the biggest ‘scheme’ I have ever come across!

For nearly a year now we have been ringing Monaghan (the office where they rule all the roost with regards to this and other disabilities schemes) and we have been told time and again how to get on the scheme, but each time the story has changed ever so slightly and we have been left confused. Now we have been told that our car, which was inherited through the family, is not allowed on the scheme as we are not the ‘original’ owners who purchased the car, even though the car was purchased by us from the rest of the family! Cars of inheritance or gifts are simply not allowed on the scheme. No explanation, just cause!

Long story short we will need to change our car, trade it in against a car of equal worth with a modification in order to be on this scheme. That is just bothersome for the sake of it!

I do have a Primary Medical Certificate which should make this process straight forward, but, as you can see below in the information, it is complicated and unnecessary and it means we have to trade our car, which is something we don’t want to have to do nor have the money for, so unless it is a straight swap for something, we won’t be doing it :/

Another thing is we will have to modify the car in order to be on the scheme, this modification has to be 10% of the cost of the car. This part pisses me off because I know people who have gotten brand new cars in the last 2 years and only got a steering knob put on the car, at the cost of about €20, this 10% thing is only recent meaning those who have already availed of the minimum modification requirement can carry it over on to their new cars without the 10% modification needing to be done to their car, but for us new applicants, we have to pay the full penance! and also the Mobility allowance is now gone, with absolutely no replacement, so there is no help at all for people like us who want to get on the scheme.

It is just not fair.

Here is how the scheme works:

– All information taken from Citizens Information site – 28th June 2014

Tax relief for disabled drivers and disabled passengers:

Information

The Disabled Drivers and Disabled Passengers Scheme provides a range of tax reliefs linked to the purchase and use of vehicles by disabled drivers and disabled passengers in Ireland. The rules of the scheme are set out in the Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations 1994 (SI No. 353/1994) as amended. Under the terms of the scheme, you can claim remission or repayment of vehicle registration tax (VRT), repayment of value-added tax (VAT) on the purchase of a vehicle and repayment of VAT on the cost of adapting a vehicle, up to a maximum of €9,525 for a disabled driver and €15,875 for a disabled passenger.

Relief is limited to a vehicle that has been specially constructed or adapted for use by a disabled person and that has an engine size of less than 2,000cc in the case of the driver and 4,000cc in the case of the passenger.

If you qualify for tax relief under the scheme, you can also claim repayment of excise duty on fuel used in your vehicle for the transport of a disabled person, up to a maximum of 600 gallons per year. In addition, if you qualify under the scheme, your vehicle may be exempt from the payment of annual road tax on application to a Motor Tax Office.

Vehicles adapted for disabled drivers or passengers are entitled to exemption from toll road fees. Toll road operators issue special passes which are recognised by all other toll road operators and which allow such vehicles pass through the tolls without paying. To obtain a special pass apply to your nearest toll road operator (pdf).

 

Rules

In order to qualify for tax relief under the scheme, you must have a valid Primary Medical Certificate. A Primary Medical Certificate confirms you are severely and permanently disabled and:

 

  • Are completely or almost completely without the use of both legs or
  • Are completely without the use of one of your legs and almost completely without the use of the other leg to the extent that you are severely restricted as regards movement in your legs or
  • Are without both hands or both arms or
  • Are without one or both legs or
  • Are completely or almost completely without the use of both hands or arms and completely or almost completely without the use of one leg or
  • Have the medical condition of dwarfism and serious difficulties of movement of the legs

Local Health Offices of the Health Service Executive (HSE) process applications for a Primary Medical Certificate. If the HSE refuses your application for a Primary Medical Certificate, you may appeal the refusal to the Disabled Drivers Medical Board of Appeal, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin.

 

How to apply

Download and complete Form DD1 (pdf). This application form is also available from the Central Repayments Office.

 

Applying for remission of VRT

You need to send the following documents to the Central Repayments Office

  • Form DD1
  • The original Primary Medical Certificate if you are claiming for the first time. You must apply to your Health Service Executive (HSE) Area for an application form for a Primary Medical Certificate – obtain an application form from your Local Health Office in the HSE. Complete the application form and return it to the Senior Medical Officer of the Local Health Office. The Senior Medical Officer then appoints a HSE doctor to visit your home and carry out an assessment of the level of your disability. If you satisfy the requirements, you are granted a Primary Medical Certificate by the HSE.

If your application for remission of VRT is acceptable, you will be sent a Letter of Authorisation which authorises you to purchase a vehicle. When you have chosen the vehicle, the vehicle identification number (VIN) must be submitted to the Central Repayments Office on the form issued to you with the Letter of Authorisation. You will be issued with an Exemption Notification that allows the vehicle to be registered exempt of VRT at the NCTS centre.

 

When you have bought the vehicle, you must obtain the following documents

 

  • An original invoice from the dealer showing the full purchase particulars of the vehicle and verifying that payment of the amount due has been made in full
  • An original invoice from the person who adapted the vehicle, showing that payment has been made in full. The invoice must show full details of the adaptations to the vehicle and the VAT charged.
  • From 29 April 2012 a new vehicle that is adapted requires an Individual Vehicle Approval (IVA) certificate from the National Standards Authority of Ireland (NSAI)

To register the vehicle at the NCTS centre the dealer must submit these documents, along with the Letter of Authorisation, the Exemption Notification and the completed Form DD1. If the documentation is in order, the NCTS will register the vehicle without charging VRT.

When the vehicle is registered, to obtain a repayment of the VAT the dealer should submit the Letter of Authorisation, the Exemption Notification and the invoices mentioned above to the Central Repayments Office.

 

Applying for repayment of VRT and VAT

If VRT has not been remitted and you want to claim repayment of VRT and VAT, you need to submit the following documents to the Central Repayments Office.

 

  • A fully completed Application Form DD1
  • The original Primary Medical Certificate if you are claiming for the first time.
  • An original invoice from the dealer showing the full purchase particulars of the vehicle and VAT charged and showing that payment of the amount due has been made in full
  • An original invoice from the person who adapted the vehicle, indicating that payment has been made in full. This invoice should set out the full details of the adaptations and the VAT charged.
  • The vehicle’s Vehicle Registration Certificate.

If the vehicle has been registered before, there is no need to go through the usual change of ownership procedure as this will automatically happen when the vehicle is taxed exempt at the Motor Tax Office.

If your claim is accepted you are issued with a Certificate of Approval by the Central Repayments Office which you should submit to your local Motor Tax Office. You will be issued with a new Vehicle Registration Certificate which you should send to the Central Repayments Office where it will be endorsed to the effect that the vehicle was purchased under the Disabled Drivers and Passengers Scheme and cannot be disposed of for two years. This certificate will be returned to you immediately.

If the vehicle has previously qualified for tax relief under the scheme, the maximum amount of tax relief that can be claimed for the vehicle will probably have already been claimed. However, you should still submit form DD1 with all the required documentation as listed above.

 

Applying for refund of excise duty on fuel

Claims for repayment of excise duty on fuel should be made once a year on Form DD3 (pdf) which will be automatically sent to you by the Central Repayments Office.

You need to keep receipts for the fuel purchased for two years, but do not have to submit them with your claim. You have to estimate the percentage of that fuel that is used for your own transport or the transport of a disabled passenger.

 

Applying for exemption from motor tax

If your vehicle is being registered in Ireland for the first time, you need to present your Vehicle Registration Certificate to your local Motor Taxation Office.

If your vehicle was previously registered in Ireland before you entered the scheme, you will be given a Certificate of Approval by the Central Repayments Office, which you should present at your Motor Taxation Office.

 

Where To Apply

You can find further information on the tax relief scheme (pdf) on the Revenue Commissioners’ website

 

Central Repayments Office

Office of the Revenue Commissioners
M: TEK II Building

Armagh Road
Monaghan
Ireland

Tel:+353 (0)47 62100
Locall:1890 606061
Homepage: http://www.revenue.ie
Email: cromon@revenue.ie

____________________________________________________________________________
 

 

 

Social Welfare Cuts Ireland – 2014

Since going into the wheelchair, I have been in the process of applying for and filling out endless social welfare forms and other such applications now that my Husband, nor I, can no longer work given my current disability.

I never realised how much there was that needed to be applied for when something like this happens.

However,  what came as the biggest surprise is how the Irish social welfare system has completely stopped some payments to new applicants without any prior warning, explanation or alternatives given to replace these payments to those who need it the most, for example, the Mobility Allowance, The Motorised Transport Grant, Diet allowance and Mortgage Interest Relief have all completely stopped outright to new applicants, with many changes in other payments.

However, Those who are currently receiving these payments will continue to do so until the scheme is updated.

Those who continue to get these payments are getting a substantially higher payment and far more benefits than what is now available to new applicants. This is very unequal and unfair. I will highlight the rates of pay below that I have come across directly myself and I will outline a brief explanation of the changes in each of the aforementioned payments as of 2014 with some links for more information, as follows:

I am aware that I have highlighted only a few of the changes overall. If there are any payments that I have not highlighted or that I have overlooked please let me know and I can add it to the post, Thank you.

As well as the obvious recommended payments for people with disabilities like Disability and Carers Allowance. Which have been so far left alone this year, the following are the payments that have either stopped outright, stopped to new applicants or have changes:

THE MOBILITY ALLOWANCE & THE MOTORISED TRANSPORT GRANT

This monthly payment has now been completely stopped to new applicants with no updated news on a replacement scheme, which was supposed to be put in place last June 2013. People currently getting the payment will continue to do so but it will eventually be faded out in lieu of a replacement scheme.

What also has stopped to new applicants as of the same date as this, is the Motorised Transport Grant for those people who need adaptations to their car in order to keep their job. This was done so under the radar that a lot of people are completely unaware of the stoppage.

What worries me is, that The social welfare/Government will come along and say that the Free Travel Pass, that those on some social welfare payments are entitled to, will cover this Mobility Allowance, when it simply doesn’t. Bus Eireann Busses (that will bring you from rural areas to accessible areas of the city) are NOT Wheelchair accessible at all. So getting anywhere from a rural or remote area means paying for a Taxi or relying on others to transport you, which completely defeats the purpose and that is why the Mobility allowance and the Motorised Transport Grant is valid and needed.

Now in February 2014, there is still no sign or mention of a replacement scheme for those of us who need it most – info as follows:

The Mobility Allowance: As printed on Citizens information.ie on the 14th February 2014:

The Mobility Allowance is a means tested monthly payment payable by the Health Service Executive (HSE). It is paid to people who are aged 16 and over and under age 66, and who have a disability and are unable to walk or use public transport and who would benefit from a change in surroundings; (for example, by financing the occasional taxi journey). If an allowance is awarded, it will be continued beyond the age of 66 but you may not apply for the allowance if you are aged 66 or over.

There is no specific legislation in Ireland providing for Mobility Allowance. Instead, this Allowance was introduced in 1979 by the Department of Health and is payable under Section 61 of the Health Act, 1970.

On 26 February 2013, the Department of Health announced that the Mobility Allowanced scheme was closed to new applicants. An alternative scheme is being devised to replace it.

On 11th June 2013, the Department of Health announced that Mobility Allowance would continue to be paid to those already receiving it until the scheme is replaced.

Rates:

The allowance is paid monthly. The lower rate is payable to those who are availing of the Disabled Drivers and Disabled Passengers (Tax Concessions) Scheme. The rates for 2012 are:

High rate Low rate
€208.50 per month €104.25 per month

That is a substantial amount of extra money per month that some people are continuing to get, yet new applicants can no longer apply.

DIETARY SUPPLEMENT:

Another weekly payment that has been completely cut without any explanation as of the 1st of Feb 2014 is the Dietary Supplement.

Our local Social Welfare Employee told us that as the 1st of February fell on a Saturday this year 2014 (the day this payment stopped) She and the other workers only got the email memo sent about it when they arrived into work on Monday the 3rd, She said they got no prior warning or explanation.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

The diet supplement was discontinued for new applicants from 1 February 2014.

However, people who were getting Diet Supplement before 1 February 2014 can continue to keep the payment (for as long as they continue to be entitled to the payment).

You are entitled to retain the diet supplement for a prescribed diet, if you:

  • Have a specified medical condition
  • Meet the conditions for Supplementary Welfare Allowance (SWA) and
  • Satisfy a means test

To get a diet supplement, a hospital consultant or a hospital registrar must certify:

  • That you or your adult dependant or child dependant has been prescribed a diet because of a specified medical condition
  • The type of diet prescribed
  • How long you will need the prescribed diet.

A gluten free diet for an adult or a child aged 18 to 22 may be prescribed by your family doctor (GP).

In the case of diet supplements, for example, for people with cystic fibrosis, the long-term illness scheme book may be accepted as verification that such a diet has been prescribed. The length of time for which the diet is being prescribed and the type of diet must be stated.

Qualifying diets

The weekly cost of each prescribed diet is set by the Department of Social Protection. The following diets qualify for the diet supplement: (Some people are continuing to get these payments, but new applicants can not apply)

Qualifying prescribed diets Cost of diet, €
Low-lactose, milk-free diet 65.43
Gluten-free diet 68.43
High-protein, high-calorie diet 71.43
Altered consistencies (liquidised) diet 74.93

HOUSING ADAPTATION GRANTS:

They are very difficult to get as funds are being held tight at the moment. I have also been told from a Social Welfare Employee over the phone that they have not been allocated the funds for 2014 as of yet and that I will more than likely not hear anything about this until next year 2015. I had all documents in since the end of 2013!

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Changes to 3 housing grant schemes were announced in January 2014 and came into effect immediately. The main changes to the Housing Adaptation Grant for People with a Disability are:

  • The maximum income threshold has been reduced to €60,000 (previously €65,000)
  • The percentages of approved costs covered by the grant have been adjusted on a sliding scale (but the maximum grant stays at €30,000, or 95% of approved costs)
  • Extension works will only qualify if no suitable cheaper option is feasible
  • An occupational therapist must confirm that the works are fit for purpose and that they meet the applicant’s needs in the most economic way
  • Income of all household members will now be included in the means test (though Carer’s Allowance should be disregarded)
  • Applicants must prove that they have complied with the Local Property Tax

The Department of the Environment, Community and Local Government say it is preparing revised guidelines for the 3 schemes.

MORTGAGE INTEREST SUPPLEMENT

This weekly payment has now been completely stopped from social welfare. If you are now having difficulty with your Mortgage payments you must speak to your bank in organising help with your payments, yet, once again, People who are currently on it or who applied before Jan 1st 2014 will continue to get payments for as long as they are entitled.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Mortgage Interest Supplement (MIS) provides short-term support to help you pay your mortgage interest repayments.

From 1 January 2014, the Mortgage Interest Supplement scheme is closed to new entrants and no new applications will be accepted from this date. This measure does not affect current claimants immediately (people who were getting Mortgage Interest Supplement before 1 January 2014). The scheme will be wound down for these claimants over a 4-year period.

If you are experiencing short-term mortgage difficulties your lender must support and engage with you under the Mortgage Arrears Resolution Process (MARP). The website, keepingyourhome.ie, provides comprehensive information on the services and entitlements available if you are having difficulties making your mortgage repayments.

RESPITE CARE GRANT

The Respite Care Grant used to be €1700 and is now €1,375 and is paid once each year, usually on the first Thursday in June, for each person you are caring for. It is not taxable.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Information

The Respite Care Grant is an annual payment made to carers by the Department of Social Protection. Carers can use the grant in whatever way they wish. You can use the grant to pay for respite care if you wish, but you do not have to do so. More information about respite care facilities is available.

In June of each year (usually on the first Thursday of the month), the Department of Social Protection pays the grant automatically to carers getting Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance or Prescribed Relative’s Allowance from the Department. Only one Respite Care Grant can be paid for each person getting care.

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The long and short of this is, The Irish Social Welfare System needs to get the finger out and sort out their payments so that it is fair and considerate to all people on these benefits.

Some people are out of work, not by choice but because they have been forced to by illness or some other uncontrollable outside source. In these situations support from the state is expected and yet, never organised enough or forthcoming at all.

The only thing about this whole thing that bothers me the most is that the people who already are getting some of the payments will continue to do so until a ‘new scheme’ is written up, and there is no sign of that happening nearly a year after they said it would. New applicants need not apply, we don’t even get the chance to anymore.

This has caused a serious situation of inequality for those who find themselves newly disabled. These people are the most vulnerable in their new state, but receive no proper support.

These haven’t been cuts, they are a cost saving exercise at the expense of the newly disabled which is simply not fair.

I would love feedback on how any of this has affected you directly or affected someone you know. As always you can submit a comment here or write to me at irishpotsies@gmail.com, either anonymously or otherwise, I always love to hear from you 🙂

New Wheels for Wonky Joints!

A little update for you.

This morning I had an early appointment to go visit my GP. My walking and pain have gotten worse, well the pain and discomfort has, the walking hasn’t really been there for a couple of weeks now anyway so, I have been trying to figure out what to do as I have been waiting for nearly 3 years now for a public Rheumatologist appointment in the Limerick Regional. I have been making lots of phone calls to see where I am in the ‘so called’ health system.

When I rang during the week to tell my GP the story with my legs, he said to ring the hospital and see what was going on with that appointment and to explain the urgency for it. Though I had done this numerous of times already throughout the last year, I decided to follow orders and do some more ringing.

It turns out, when I rang the public Rheumatologists secretary. That she did have my name on the waiting list and that they have received at least one letter from my cardio specialist (meant to be 3 letters in total at this stage, since april 2011!) but that I was viewed as a routine patient and not urgent therefore they can not give me a date as to when I might be called.

So as per doctors instructions, I explained my current situation.

“Look, ah, I cant walk… am, im currently being wheeled from room to room on an office chair…”

I actually am, its been my saviour the last too weeks, well, that and my poor hubby having to push and pull me everywhere in it, and jumps to my every whim. I seriously am blessed with this man!

Secretary – “oh, well, am, there’s nothing I can do now, unless you get an updated letter from your GP stating the urgency and that it is an emergency case…”

So after some questioning about certain letters, that look as though they may never have been sent for me to get an appointment in the first place, I return to my own GP on a last minute, early appointment so that I wouldn’t miss work this morning.

We arrive at the doctors house, Keith runs in to say we are here and he invites us in. Keith runs hack out to the car to help life me in.

…all manor of uncomfortable noises, grunts, stumbles and various levels of retardation on my part and I am finally on the doctors exam bed, thingy!

In walks the doctor and what starts to be nearly an hour where we discuss my options going forward for treatment and how the HSE has failed patients like us and doctors like my GP.

Our closest place for treatment, like proper, recognised treatment for dysautonomia and EDS especially, is over in London. There are no specialists of the condition currently anywhere in Ireland. There are a few doctors, specialists, physios and orthos over here who have a general interest in it, but no specialist qualification for treatment over here at all. This is an ongoing battle, we as patients are struggling through just to get the treatment we need.

He mentioned to me after a range of motion test on my legs, that a wheelchair may be in order to help with my loss of mobility. This condition can be progressive, especially without proper treatment and I have been on and off crutches for the past few years now due to increasing joint strains and pain in my legs.

and this is where we are!

I have done my research in trying to understand the procedure to get a wheelchair via the medical card or medical insurance, seriously long winded! I have sent a ton of emails for information on chairs so all I have to do now is wait to be assessed for the chair, and sure, I dunno how long more I could be waiting for that for! I’ll just have to wait and hope for the best.

I wouldn’t have used a wheelchair for long term use before, only for short term use, I am not sure how I feel about it yet to be honest, right now I just want some mobility back! Any and all advice would be greatly appreciated in that department. Thank you and i’ll keep you posted on what is happening. 🙂

Thank you for continuing to read if you are still doing so. Please note I always welcome guest posts, etc. so if you have anything you would like to post, blog, or even share over on our Facebook or Twitter, please feel free 🙂