Rare Disease Day – Irish Dysautonomia and Rare Disease Awareness

Hi, I’m Lette and I have the rare diseases, Dysautonomia, EDS (Ehlers Danlos Syndrome), Pots (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope) and Gastroparesis.

What are these conditions?

Dysautonomia is the malfunction of the Autonomic Nervous System (ANS). The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, blood pressure, digestion, respiratory rate, pupillary response, temperature, urination, and sexual arousal. It is an umbrella term for various forms of ANS malfunction including Pots.

Pots or Orthostatic Intolerance is when you cant regulate your blood pressure and heart rate when you change from a supine or seated position to an upright position. For instance in my case, when I stand or at times sit up, my blood pressure plummets, heart rate increases, my blood pools in my legs and oxygen is reduced to my heart and brain and makes me presyncope if not completely faint a lot of the times. This Fainting is caused by NCS or also called Vasovagal Response/syncope. POTS is often accompanied by vasovagal syncope, with a 25% overlap being reported.^[1]

Diagnosis usually requires a Tilt Table Test (TTT) and can show persistent increase in heart rate of at least 30 beats per minute (40 bpm if under 19 years of age) within ten minutes of standing.

Symptoms include:

• Postural tachycardia
• Headache
• Abdominal discomfort
• Dizziness/presyncope
• Nausea
• Fatigue^[5]
• Lightheadedness/Syncope
• Sweating
• Tremor
• Anxiety
• Palpitations
• Exercise intolerance
• Brain fog

NCS or Vasovagal Response/Syncope. From the wiki:
“There are different syncope syndromes which all fall under the umbrella of vasovagal syncope. The common element among these conditions is the central mechanism leading to loss of consciousness. The differences among them are in the factors that trigger this mechanism.”

Ehlers Danlos Syndrome Type 3 (Hypermobility Type) is a group of inherited disorders that affect your collagen which is in practically all elements of your body, skin, hair, nails, cartilage, bones, blood vessels, organs and eyes. As such this condition affects those structures in me causing broken bones, dislocations, subluxations, damage to joints, muscles, skin, organs, easy bruising, bleeding, severe pain, my eyes are affected and I am hard of hearing. I also have gastrointestinal issues including Gastroparesis. EDS also now has me in a wheelchair because of pain and instability in my pelvis, hips and lower legs.

Gastroparesis also called Delayed gastric emptying or Gut Dysmotility is when there may be partial paralysis of the stomach or intestines causing food to stay in the gut for an abnormally long period of time. This causes me chronic nausea, vomiting and at times severe pain.

There is no cure for any of these conditions, they can be managed with medication but flare ups are frequent and the conditions can progressively get worse over time even while being managed with meds.

My Diagnosis and first hand experience of treatment in Ireland

I was diagnosed with Pots in April 2011 after nearly a month in hospital and a ton of tests because of severe low blood pressure and constant fainting on sitting upright or standing. My first doctor after 2 weeks said to “Get out of bed and move around, you’ll be fine”, I was still fainting all over the place so needless to say we asked for a letter (being sure to put it in writing) stating that he as a doctor thought I was fit enough to be released. This letter never materialised and we asked for a second opinion.
The new doctors team did a serious amount of tests over the course of another 2 weeks or so and they found that I did infact have something wrong, an impressive case of a condition called Pots with NCS. I was started on a course of medication and told to research my new ailment and they would check on me with regular outpatient visits.

During this research I noticed that EDS was commonly associated with causing Pots and NCS and it explained a history of symptoms that I had experienced prior to all this. I approached my consultant about this when I next saw him and he was very dismissive. He agreed I had hypermobility but called it benign and that it wouldn’t need treatment, despite my symptoms.

Many hospital admissions later the dismissive nature continued and I quickly found out that there are no EDS Specialists in Ireland. There are no Dysautonomia Specialists either. The first step to seeing if I did have EDS was to meet with a Rheumatologist in Cork who had a special interest in Ehlers Danlos. This was October 2012 and after a consult with him, he had clinically diagnosed EDS Type 3 with possible overlaps of other EDS types, and recommended meeting with Prof. Rodney Graham in London who specialises in EDS and other Hypermobility Syndromes for a definitive diagnosis and treatment plan.

In and out of hospital a few more times, but start to feel well enough to start back to work in 2013, I absolutely loved it and still had good and bad days but could manage until the pots got worse again and the pain in my hips got so bad that I ended up in a wheelchair and was advised to stop working again within 6 months of starting.

A few more ambulance rides and hospital admissions later, my health was deteriorating and in May 2014 I started having seizures. The drugs I was put on turned out to make everything worse and I ended up in the ICU after having a 2hr 40min series of seizures. I was sent to Beaumont for tests and it turned out I didn’t seem to have epilepsy but that the first seizure may have been a once off due to the lack of oxygen to my brain after one of my faints and then the drugs they treated that seizure with, I ended up having a strange reaction to and they made the seizures worse. It took 3 months in and out of hospital to realize this and now that those drugs have stopped, I am delighted to say haven’t had a seizure since!

During these few months of being in and out of hospital with seizures, I set up a fund to help me get to London to see the Hypermobility specialist as there was no way I could afford to do this on my own. I got an amazing amount of support from family, friends and complete strangers of whom I cant thank enough! I got to meet Prof. Rodney Graham over in London in August 2014 and got a confirmed diagnosis of EDS Type 3. He wrote to all my doctors with the confirmed diagnosis and gave them advice of how my treatment should advance going forward. Advising that I return to London to get help with my Gastro and autonomic problems and referring me to Harolds Cross would be of great value to me. I am currently waiting for a referral for this since August 2014.

If proper systems were in place in this country, there would be no need to have to go to London for a basic diagnosis. But as there are no specialists or centers here and even a steady level of doubt among some doctors as to whether EDS is even a considerable diagnosis, even after being clinically diagnosed by a Rheumatologist. They didn’t seem to realize that there is no genetic test for EDS type 3, it can only be clinically diagnosed but they still doubted it from the rheumatologist in Cork. Once the letter came back from Rodney Graham on the diagnosis however, attitudes seemed to soften a little.

I was back into hospital in November and December 2014 with Gallbladder dysmotility and Gastroparesis. The level of care under this new surgical team of doctors was amazing and they were very willing to learn more about EDS and how it affects everything.

Today I take 18 tablets a day, need injections, pain management, physio, occupational therapy, have a full time carer (My amazing husband), I continue to faint and sometimes do so without breathing for long periods of time, I rely on a manual wheelchair but require a motorized chair, but I have been waiting for that for over a year now. Thankfully, though there are a few negatives through all these diagnosis, I have met phenomenal nurses and carers, amazing doctors and consultants willing to learn but the shortfalls are evident to any of us who are a patient or carer, we can clearly see that the health system needs a serious reform. So too do the social welfare systems, there are huge difficulties getting access to certain things which people are entitled to. The dietary supplement, Mobility allowance, mortgage interest supplement for example has been cut to new applicants, however those who are already getting these payments can continue to do so. The carers respite grant has been reduced and there are huge limits and difficulties in getting access to things like Housing Adaptation grants and the Drivers and Passengers with Disabilities Tax Relief Scheme. You can read more about that here.

Thankfully the Rare Disease Plan 2014 to 2018 Plans this major reform of the health service and the supports currently in place delivering better access to high quality service and care for both patients and their carers. You can read all about this proposed plan Here. However there has been no recent updates as to when it will be actively pursued and implemented while all of us currently with rare diseases have to wait in a system with no specialists, no treatment, no care. We have to travel to London when things like the Travel Abroad Scheme (TAS) is there within the HSE to send people abroad for treatment but it is not being offered or is being refused the majority of times to those who apply for it saying their care can be fulfilled here in Ireland when it can not!

In the meantime online communities like EDS Awareness Ireland and Irish EDS and HMS are pushing to appeal for awareness, support, recognition, specialist treatment and care and funding for our rare diseases.

We are Fainting goats, we are Zebras, we bend but we are not broken, we have invisible illnesses but there is always hope and the will to spread awareness of these conditions and difficulties. Lets make our voices heard.

Thank you for reading.
__________________________________________________________________________

Follow Irish Dysautonomia Awareness on Twitter, Facebook, Youtube & Spreadshirt and if you would like to support Lette to help her get back to London for proper treatment, you may find her Fund Here, Thank you.

 

 

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.

__________________________________________________________________________

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 🙂