@ Margaret, I am establishing a new group in Ireland called freedom4disabed.com to assist disabled people accessing the necessary supports from HSE – particularly supplementary benefits to assist with clothes, shoes, heating, travel costs for hospital etc. Im not sure where you are located, but your sister sounds she could do with a hand. If you wish you can contact me via facebook or email jonathanswrainey@eircom.net Since the last round of HSE cuts, many patients are now unable to reach hospital apointments from rural areas up to Dublin. We hd a case 2 weeks ago a 55 year old man had to drive from Swanlinbar to Cappagh on 2 days at cost of 90euro in petrol, tolls and parking out of his 188euro a week, unknown to him he can get help with these costs through HSE. Hope you sister is staying positive.Jon

@Margaret It must have taken a lot out of your sister to go out and protest yesterday. I admire her for doing that and for writing this email/article. Its one small example but I really think it shows the distance between the politicians and the real-life effects these cuts will have.

I am also registered disabled at the moment – and I have tried to claim back for taxi expenses on emergency visits to Hospital. You cannot do this now. The C.W.O. in our area was instructed not to reimburse for this expense as part of medical care from now on . At one time if you had to travel to Dublin or another city for Hospital or Specialist care you could submit receipts adding to not more than 40 euro for you travel costs for doing so . I had kept several sets of receipts having been told to submit them all together and recoup the expense in one application with additional doctors certs and dates of appointment s – but having done so was told that it was not now possible to claim travel expenses under Supplementary Welfare system. It is difficult at night and early morning appointments to travel by bus . I have been asked to explain the difference in cost between taxi receipts where taxi took different routes or when I had to make stop for Pharmacy on the way . I have a bag of receipts from a period of complete invalidity when I relied on taxis and could not have this expense back dated . I think many people would be quite happy to stay away from Hospital – but if you skip appointments you are seen as wasting time and – “non compliant”.

Anna, I receive travel reimbursement from HSE for trips Cavan-Dublin for medication (infusion) monthly. I am not doubting what you are saying, but feel perhaps it is more “local” decisions rather than HSE policy. I would encourage you to take this to HSE CWO Superintendent if you can, or like I had to do initially, write to Minister, highlight the bus HSE were sending with driver totally 5 hours was not sensible use of resources whereas if they covered the fuel cost, I could arrange lift on days I could not drive. Just a suggestion, and wish you well!!

I went to an Open Day at University yesterday – for Students with Disabilities . At it the Student Disability Services presented the range of Aids available to people to study . Some of our group were blind or had speech difficulties or mobility challenges – Cerebal Palsy , MS etc. Maybe your sister could try to contact them . They have a volunteer program called ALIVE . You could contact any University to see if they can do something for you – maybe media students might work with you to help you complete your goal and film or photograph this journey you are on … You could ask the V de P to assist with the shoes – or they might carry another utility bill . Maybe some neighbour or friend could try organise a running group to do Flora Marathon or Triathlon or Iron Man – or another ! – and high light the issue . Everyone doing those events buy shoes for it from Sports stores and it could be a perfect vehicle or platform to get some attention on the long wait for appropriate shoes when the rest of us can pick from dozens of stores …………best of luck . I know a school who would probably be delighted to help .

Easy make the tough decisions that will affect others, but not oneself.

My sincere empathy to you. I can identify so well with you as my late Mom had similar problems. She loved nice shoes but could never buy from the shop. She had to get them specially made. The waiting and the promises were endless. Good luck and I sincerely hope that someone with similar problems will get a job in high places so that a little understanding of this issue will result in improvement.

I hope you can keep your spirits up . Bloggitall ..!! I liked your photos – you are very creative and colorful : Get on the phone or email and send some of those photos and a byline to students unions or colleges – every year they get involved with all kinds of issues to find out what is going on – ” ..in the real world..” . I think you could even start a group for Fabulous Feet :) Spread the net wide and see if you can get a marketing or customer relations person on your side : cold call companies . I did this to fundraise before for my health ‘issue’. A lot of rejections but a lot of help also. You could buy the leather on line in Spain maybe where they have a history of fine leather good s and many many artisans and shoe, bag , glove and saddle makers – in south east . That man in Wicklow might make a pair to put the HSE to shame …:) It could be a fun challenge – and maybe a film student might make a short documentary about it – at Galway Film Board , they produce and fund many community documentaries every year – and screen them in the Film Fleadh. This is a regional thing . It could be fun . Contact the Design courses and ask if they would set a challenge . You may not get the best shoe fit but it will give more profile to the issue too – and maybe have a knock on effect : people knocking on your door. I dont think I have ever seen an in depth film or chat show episode on footwear and aids for mobility issues and disabilities . All the little details trip us up – Dont give up or lose hope : creative people are born to invent solutions ……..very best to you. I t would be a great photo study – hands and feet . I think , i may be wrong , but i think your condition would be helped by hyperbaric oxygen therapy – there is a free chamber in Kerry as far as I know – set up by the good work of a man who had MS and backed by the city council in the town . Maybe someone cold look into it for you . It is meant to have great therapeutic effect for muscular neuron diseases too. They have one at my Hospital also but as far as I know it is used mainly for alleviating the bends in divers , and according to a taxi driver who often takes me to A and E : a golfing fraternity ;) H- oops . I am being naughty . But there in : another story to tell!

@ Ann and Margaret. The two of you are truly beautiful examples of the human race, and all that is good within it. You’ve touched me so deeply, that it has taken me this long to even attempt a meaningful response. Your intelligence, bravery, unbowed spirit, creative thinking and sense of fun, leaves me almost dumbfounded with admiration. I think I’m really in a state of shock and the only thing I can think of saying to you both, is that not only are you a credit to each other, but the fact that you still retain the ability to empathise with other people in less severe situations than yourselves, is an immeasurable gauge of your goodwill towards your fellow mankind. I wish you well!.

Please read the article.

“I tried and tried to get shoes on the open market but to no avail.”

Chances are Alan she is on Disability.I’m open to correction but i think the rate is 188 a week.
Nothing wrong my feet,the last shoes i bought 2 weeks ago cost 75 nothing special.I can only imagine how much medically tailored shoes cost.

What a thing to say …. If they are being fitted by the HSE she is in receipt of Disability – and perhaps there are other factors to her status as disabled beyond congenital assaults to her feet. As she is in a very small minority who have this – it should not be a burden to the State . Feet change over time , bones settle . To wait 18 months is ridicilous . In another article lamenting the lack of Irish made goods – Irish Times Online yesterday – a commenter made note of an Irish company making hand made shoes in Co Wicklow or Kildare …perhaps HSE could commission them to do a proper professional measurement and assessment and make a pretty pair of shoes ! I am always amazed and dismayed to see the type of shoe those with small foot disabilities are forced to wear. SOS to an innovating young designer . Bravo Ann Kennedy for your photo. When spoiled young earners see fit to go out and spend 400 600 on designer shoes – including many in voluntary sector from what I can see at various functions about – why shouldn’t she expect a little better too?

http://gajitz.com/step-it-up-crazy-shoes-hug-feet-to-make-mornings-easier/?ref=search&utm_campaign=googimages&utm_source=images&utm_medium=other

http://carenetconnection.com.dnnmax.com/AdaptiveShopsMall/AdaptiveClothing/MenandWomensShoes/tabid/318/Default.aspx

The rate for disability is 188euro per week. Specialist shoes like this can take several sittings to be measured and fitted correctly, not to mention the expertise in manufacturing them. The final cost can be anything up to 600euro a pair. I have mobiity issues myself, and use MBTs which are “off the shelf” shoes,and cost me close to 200euro a pair. I usually go through 4-5 pairs a year. For instance I have indoor lightweight shoes, then casual shoes to wear with jeans etc Runners for physio/rehab and then good sturdy MBT boots for winter/outdoors. I totally understand where this woman is coming from. On a fixed income it is very hard for people to manage their disability. The HSE awarded me a grant last January for my shoes for 2012 on back of a consultants letter, physio letter and GP letter. The grant was 35euro, yes 35euro, not 350euro.
There are multiple costs in having a disability. Additonal heating costs, sometimes additional transport costs. Many disabled need help when shopping or when doing housework. The average home help in Ireland is provided for 35 minutes per day to a disabled person. Some HSE areas are introducing personal care packages which are much more flexible and tailored to the disabled person. The HSE pay a rate of 13.88 per hour. Agency home helps or HSE direct homehelps can cost up tp 30euro an hour to administer and provide. So the personal care package is much better.
An able bodied person can nip into heatons, dunnes or pennys and pick up a pair of runners for 20euro on sale. I needed new runners 6 weeks ago as my 1 year old ones were causing my left leg to dip at outter sole, putting pressure on replaced knee and replaced hip. I had to do this myself at a cost of 180euro. I know my own personal financial situation is different from this featured lady, but even with additional household income, my own disability costs upwards of 2000euro a year – basicially everything I need or cannot do myself has to be paid for to be got, or done.
i was recently bill 17euro from HSE for a sponge I took from hospital after an operation. A spong with an extension shaft so I could clean a certan part of my body for 4 months after operaton without putting pressure on wound/operation area. Can buy the same songe with extention on eBay for 1.99 ;-) There is a massive mis-match between the money spent on Dept Health, and the services / support provided.

If only you were in their position you would understand where Anne is coming from. You and I are fortunate enough to be able to buy our shoes from the shops. Believe me, I have a little knowledge of where Anne is coming from – tailor made shoes, waiting for someone to measure feet, wrong measurements, expense if not funded, delays through the system. Count yourself lucky to be so innocent regarding such topics.