Survey Feedback: Myalgic Encephalomyelitis (ME) Patients' Experience Accessing Welfare Payments in Ireland

 

“My experience of the welfare system was an extremely distressing and degrading experience with a long-lasting impact on my physical and mental health.”

“We, patients, must weigh up whether the application process or work will have a lesser negative effect on our health.”

“It's an absolutely demeaning process to go through such applications and constantly try and prove symptoms etc, especially when there are very few doctors who will back up the illness and also its awful that people with little energy on a daily basis anyway have to spend weeks or months trying to complete the application forms.”

“At no point was I told my illness benefit was going to expire and there would be this absurd gap without money, and I would need to start over when applying for Invalidity Pension.”

“Felt like that [quitting] was the aim of very cumbersome process to frustrate and exasperate applicant. I felt really angry and used this to push through and appeal [Invalidity Pension].”

Survey Feedback

Survey Feedback of one of our surveys held during ME Awareness Month 2023, i.e. ‘Myalgic Encephalomyelitis (ME) Patients' Experience Accessing Welfare Payments in Ireland’.

Thanks to everyone who participated in the survey., your feedback is very much appreciated.

Please see the survey feedback, our comments and advice via the following link

Survey

We have reopened the social welfare related survey for a short time for anyone who has not already participated who may now wish to take part, link here:

https://www.surveymonkey.com/r/S668566

Carers in the ME Community

 

For National Carers Week we are highlighting our 'Carers in the ME Community' post which is our one stop post with lots of information for carers of people with ME, including carers of people with very severe/profound ME.

Our post for carers of people with Myalgic Encephalomyelitis (ME) includes tips, guidance, support and advice as well as information on accessing carer payments. Please see the link to our post below. 

ME Advocates Ireland (MEAI): Carers in the ME Community - A One Stop Post with Information for Carers of People with ME & Severe ME

Membership of Family Carers Ireland (FCI) 

(FCI) is the national charity representing Ireland’s 500,000+ family carers who provide care in the home to loved ones, family members, relatives, friends and neighbours of all ages.

‘Our focus as an organisation is on family carers. We are the charity that asks the carer how they are. Whether you are caring for a young child or an adult with an intellectual or physical disability, a spouse with a terminal illness, an ageing parent or a loved one with a mental health illness, FCI is here to help you maintain your caring routine and to inform policy and public debate surrounding family caring.

We understand that family caring can be rewarding but also a struggle and when you need our help, we are standing by to support you. We believe that no one should have to care alone.

Your membership and involvement counts. Carers’ strength comes from unity in numbers.  The bigger our carer community grows, the stronger your voice becomes on issues directly related to family caring.’ – FCI

 

See more information via link here

#NationalCarersWeek

#CarersWeek2023

#MakingCaringVisible

Survey - ME Patients' Experience Accessing Welfare Payments in Ireland

 "We, patients, must weigh up whether the application process or work will have a lesser negative effect on our health."

ME Patients' Experience Accessing Welfare Payments in Ireland

Please complete the survey if:

(i) you live in Ireland and

(ii) have applied for a Welfare Payment in Ireland

because of your illness and the disabilities associated with Myalgic Encephalomyelitis (ME)

Or

If you are a carer who has applied for a welfare payment on behalf of someone with ME in Ireland.

Your feedback is completely anonymous and anonymised; your support is much appreciated.

2/3 min survey or take as long as you need

Survey (anonymised): here

"Applying is so cumbersome. There are so many questions and it seems normal to refuse first time. It takes so much energy to stay with it. It really destroyed my health. I have never returned to where I was beforehand."

"I was turned down twice but went to citizens advice & they took on my case, came with me to the oral hearing & assistant me in pleading my case."

"I feel like the processes need to be easier and that there should be places you can go where someone fills in forms for you and can ask you questions in more clear way/explain things."

"My experience of welfare system was an extremely distressing and degrading experience with long lasting impact on physical and mental health."

Thanks to the people in the Irish ME community who have already taken part in our Welfare related survey