Feel so let down by the HSE – I have let my DD down

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  • #63839
    Alison,
    Member

    Well ladies. Enable Ireland My arse.;-( they called today and cancelled the appointment for Thursday due to MANDATORY TRAINING. What about our kids. I just dont know what to do at this stage.;-(

    #64049
    Alison,
    Member

    DD had her play assessment today with Enable Ireland and they recommended to me to get her seen by an Audiologist(sp ear doc ) and they would be putting it on their report that she needs to see a Nurologist 😥

    I am just worried sick , but glad the wheels are in motion now.

    Would anyone know what we could apply for in the terms of benefit etc , to help us out.
    DH works full-time I work Part-time 16 hours a week.

    A.

    #64077
    Alison,
    Member

    just got word today that dd was refused DCA because she is not medically eligible, yet the same person who made the decision asked us was cerbal palsy being investigated ???? OH GOD .

    #64090
    Taylor5
    Member

    Sorry what is DCA? You seem to be really getting the run around, I think if you want or need anything in this area you have to fight fight fight… I know when my FIL was dying with cancer he wanted to stay at home, they need propper chairs and rails fitting in the house, it took ages with all the red tape, sure the poor man was nearly dead before the things were sorted…………… keep fighting you’ll get there in the end

    #64098
    Alison,
    Member

    Taylor5 , its Domcillary Care Allowance .
    Our Go between in Enable Ireland told us to apply it now on the gournds of the outcome of assessment

    #64317
    Alison,
    Member

    Oh god girls , I asked enable irela a week and a half ago for a letter of support to reaplly for a medical card for DD and one also for apply for Domcilliary Care. I called yesterday to see where my letters were and the girl who is doing them is on holidays.:( the Team Lead just called me there and asked could they wait until the girl who i orginally asked comes back from Hols. I said "NO" , I asked for them 10 days ago before she went on holidays. Am I being a ****. ?
    I also got onto Drogheda to dd Paeditrician the one who is covering for Dr Vaughan and fair dues to him , he is seeing d on Monday to give her a full assessment and anything I need for her to get her seen in Temple street etc 🙂 I have a smiey about that as its one thing that is going dd way.
    I personally myself feel drained , so so drained I cant even make dinner for dh when he comes in from work. He knows how hard it is with dd as he minds her on Saturdays when I go to work for a break. I work Part-time in a Spa doing treatments as we needed the extra money I had to do something I just could not relie on what I make in my own business. I am just shattered by the time Sat ngith comes , sunday I am justwrecked and then the whole routine starts again. I just cant seem to keep on top of things. I have thought many times to just walk but I could not and would not do it to dd…

    #65010
    Alison,
    Member

    hi all,

    just a quick update.
    Enable Ireland have seen us twice , as in the SP & OT nothing more.
    Physcologist with Enable Ireland WONT assess dd as she said she is too young.
    Physio therapist who is with the hse has done all the assessments and has said that in her opinion dd Has a Attention disorder along with GROSS Motor issues. 🙄
    Neurologist appointment was just confirmed this morning for next Tuesday at 11amin Temple Street with Dr.King (cant believe my luck getting it so quick)

    All this being said our Assessment officer in the HSE is bewildered by the Physcologist not assessing dd yet the physio can see a prob ????? 🙄 🙄

    All the reports have to be back in with the HSE by 8th Sept and I reckon it wont happen

    #66185
    Alison,
    Member

    Hi All,

    I just said I would fill you all in, in this long draw bloody saga.
    We received LM Sevice Statement in Sept and Enable Ireland have decided to wait a further 3 months before they meet us to tell us what services they can offer etc.
    My complaint to the HSE in the beginnning about the whole delay was upheld and we have gotten nothing but m100% support from HSE COMPLAINT OFFICER in Clare (we are in Navan).
    He kick up hell with Enable Ireland over the delay in why we have to wiat 3 months to meet up and girls if you seen what they wrote on paper as their reason is just appalling.
    So I got their reason today and I just welled up , imagine telling someone your daughther is on a Rotational list :(:( anyway before i well up again here is what I wrote and I have been informed tonight that the letter has to been sent to the Head Manager in the hse in meath and also the top person in leinster.
    Here is the letter its raw ,turthful and from the heart 🙁

    Dear Sir/Madam,

    We the Parents of XXXXX born on the 24th May 2006 and we feel we need to write this letter to you all.

    Unfortunately we are emailing this letter to you all with great annoyance, as each and every one of you have a part to play in our daughters life and unfortunately she is being let down by yourselves , our local HSE, the HSE in general , Enable Ireland ,the government and us as parents are starting to feel like we are letting her down too.

    xxxxxx has had to fight for her life from before she was born ,to the day she was born she had to fight for her life , she did not spend 5 days in ICU and 2 weeks in SCBU for nothing ,then she had to fight for a Medical Card/GP Card, Enable Ireland Services to DCA.

    DCA REFUSED.
    MEDICAL CARD /GP CARD REFUSED.

    At the start of xxxxxxxx assessment starting back to Jan 08, we were assured by xxxxxxxxxx that xxxxxxxxxx would be assessed etc within the 3 months,the benefits she would be entitled too etc ..
    Needless to say that this assessment was not completed within the time frame and we complaint on this and it was upheld by Joe Sweeney who has done everything in his power to help us where he can.

    xxxxxxxx was eventually assessed by Enable Ireland and her Service statement was sent to us Sept 08 and to say its appalling is an understatement of the century.
    Our little girl is in need of Physio , Speech Therapy and OT.. NOW . xxxxxxx cannot wait for a meeting which Enable Ireland said they will meet with us to discuss what services can be offered. The delay by the HSE set her back 3 months and now Enable Ireland is doing it also by another 3 months, even though I highlighted to Enable Ireland that we felt xxxxxxxx was developing a stammer in Early Sept they still went ahead with an appointment for a meeting in Dec 08

    Enable Ireland is not our only issue. xxxxxxxxx was refused DCA due to no Medical Conditions; at the time we applied (advised to do this by Enable Ireland ) she was being assessed by Enable Ireland and I am now going to have appeal the decision with ME submitting all reports, service statements and a complaint matter that is being dealt with by Jxxxxxxxx in the Complaints dept of the HSE in Ennis, Co. Clare , also another complaint is being made regarding the Service Statement. I think it’s appalling that a 2 ½ yr old girl has to fight so much for what she is entitled too.

    Each and every one of you have a part to play in xxxxxxxx development and the help she needs, the support she needs , we need as her parents.

    As you have ALL seen from the reports xxxxxxxx condition in physio has been an issue from the time she was born and she was referred to a physio in our community on her discharge from hospital at 3 weeks of age, she is now 2 yrs and 4 months old. Life is not been easy with xxxxxxxx problems and she does require a lot of attention and work. The delay with the HSE in the beginning did not help and now Enable Ireland is just appalling.

    I don’t think any of you that work in a office realise how hard it is on us as parents to watch our child struggle, not being at the same age level as her peers is heartbreaking. When she can’t communicate with you fully she holds her head in her hands and sobs. Can any of you imagine what that is like???

    The HSE refusing our daughters the DCA, MEDICAL CARD/GP CARD is an absolute insult and is just disgusting, and I am honest to god pleading with each of you, you all have the reports to get the decisions over turned for us.
    I cannot do it mentally and emotionally, I am just barely hanging on. The DCA won’t ease xxxxxxxx problems but it will help financially there is months where I go without my medications as its €85.00 and we just cannot afford that with the attention xxxxxxxx requires books, attending play centres to interact with other children. She cannot go the playgrounds because she suffers so much from her ears and chest infections. These are all day to day things we have to deal with. Life is not a simple as some people think.We were also advised by Enable Ireland and DR.xxxxxxxx(who interview us for xxxxxxxx DCA ) it would be best to get xxxxxxxx into a Montessori which we have 3 days a week and it works out at €300 per month.

    Furthermore xxxxxxxx was never examined at the DCA assessment Interview , I have spoken in person to other parents who’s children were examined in Navan for DCA and have had less wrong with them than xxxxxxxx and have gotten the DCA AND MEDICAL CARDS ).

    I myself suffer from High Blood Pressure and Post Natal Depression, do you think any of the above honestly is help me or my husband. The pressure we are on monthly to make things work is not right for any couple. I have had to up my dosage on Med because of the stress of it all. We have no support as parents , only that of our families and Jxxxxxxxx who has been justfantastic in dealing with the complaints we have had regarding xxxxxxxx Case.

    For xxxxxxxx sake I am asking each of you to please do your bit to get xxxxxxxx the day to day things that will make life easier for her and for us. So that we can all cope mentally and emotionally.
    As I said above The HSE refusing our daughters the DCA, MEDICAL CARD/GP CARD is an absolute insult and is just disgusting, and I am honest to god pleading with each of you, you all have the reports to get the decisions over turned for us.I cannot do it mentally and emotionally, I am just barely hanging on.

    All we are asking is that
    1. Enable Ireland bring forward the meeting date from Dec to sometime sooner
    2. All of you appeal the DCA Decision
    3. All of you appeal the Medical Card/GP Card Decision

    Can each of you let me know by email if you are willing to help us out with any of the above.

    #66192
    Sabrinab 08
    Member

    Your a not a bad mother, the fact that this is breaking you r heart is proof enough of that. This is so typical of the HSE on all levels of "care".. put everything on the long finger. I be;ieve everything happens for a reason, even i fit does not seem like it at the time. maybe your ds case will be the one that breaks the ridiculous chain of bad "care" with our health system and helps others. Hey even the fact that you ar e speaking about this im sure is a help to other parents!! hope you and your family are feeling ok 🙂

    #66194
    MissyG
    Member

    hi alison,

    i am SO SO sorry to hear about all the crap u’ve been put thru with ur dd & its definitely not u its just our crappy health system… i’m profoundly deaf & i’ve been on the receiving end of a lotta crap over the yrs. my parents have had to fight tooth & nail to get things for me & now i’m married with 2 kids my ds & my dd. my dd is deaf just like her mum & now i’m going through the same thing in terms of services….
    if u have any questions on sign language (which i’m fluent in, altho i am v oral, which was the way i was brought up) or want any advice on audiology, benefits, what ur entitled to or anything like that please pm me – us mums have gotta stick together & perhaps the louder the voice the more they’ll listen………..

    missyg

    #66241
    Dinomum
    Member

    My heart goes out to you…after reading this i just felt that I had to tell you that I admire your strength and determination to get the help that your dd needs. Your letter was so straighforward and emotional and I hope and pray that it will affect the people who read it in the same way that it affected me. Dear God have none of them got feelings or are they all so numbed by our ‘health system’ that they cant realise that they are dealing with real people with real feelings !!

    I hope that you get the help and support that you and your dd need. You have no need to feel anything except proud for the way that you are dealing with this, your dd is a lucky girl to have a mum like you…well done for standing up and telling it like it is to these people, I wish you all the luck in the world. Keep on fighting !!

    #66242
    Alison,
    Member

    Regarding the DCA & MEDICAL CARD issues I was onto the Appeals Officer in Kells and I have been informed of the following.

    I sent in Lilymae’s reports to the Appeal Officer in Kells on Tuesday regarding the DCA and Medical Card issue and I have been informed of the following which is absolutely gutting.

    • NEXT DCA APPEALS MEETING IS NOT UNTIL THE END OF NOV
    • Lilymae’s Medical Card Appeal File is closed and I have to apply again.

    #66777
    Alison,
    Member

    well myself and dd went to the interview appeal and i have to say I came out none the wiser
    I had to go thru the whole story from birth to now even though it was in her file already.
    I gave him a copy of all dd reports from Enable Ireland, Docs etc,.

    I am gutted to say the least I ask him what he thought our chances are and he said " I have to write up a report etc and that will be looked at at the Appeals meeting at the end of Nov and the docotors at the meeting will make the decision". He said " he would not say either way as he did not want to get my hopes up" he kept going on about Freedom of infomation acts and going to Odbusman (sp)so i reckon its going to be a no.

    I just can’t go on anymore .I do 3 hours of physio excerises on dd daily and she still has huge Speech problems Our house is so untidy , I can get dinner done or anything for DH . He thinks I am just being moody but really I am cracking.

    #66791
    delly
    Member

    Alison, i’m really late to this post, but really feel for you. My DD had a similar story too with both lungs collapsing at about 6 hours post birth, intubated, chest drains etc. All’s well now, but after she was discharged, we had regular appointments with the paediatrician in the Rotunda who checked development until she was about 14 months. I’m just wondering did you have similar apointments, as it seems from your posts, that you were just left to fend for yourself?

    #66794
    Alison,
    Member

    delly , we were more or less left to fend for ourselves, The pead in the hospital sign dd off at 6 months when there was still issues and concerns with GP , physio etc. The pead that signed her off was only covering. We made a new appointment with dd original Pead and he was furious that dd was signed off. He just said that he would leave it up tp the Ealry Invention Services to deal with her. 👿 👿 👿

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