Verona Murphy (Wexford, Independent) | Oireachtas source

I thank the Minister of State for sitting in for the Minister, Deputy Humphreys. I acknowledge that some good work has been carried out by the Minister but I remind everyone that we have had no discussion of this issue in the House since the failed referendum. I remind the House of the commitment of the former Taoiseach, Deputy Varadkar, that the Government will continue to increase payments to carers and people with disabilities. He also said that the Government would relax the means test and improve the home care tax credit. We need to follow up on that. We lauded carers. We even brought forward a referendum that said we would make their lives easier and more worthwhile by having them mentioned in the Constitution. It was rejected not because of carers but for other reasons.

I will use my time to read what an average carer's day sounds like. It is not necessarily about old people or the elderly among our population. The following example is that of a mother of five children, three of whom have a chromosomal disorder, t(14;21), which is very rare.

All three have very complex medical needs with intellectual and physical disabilities and all three are full-time wheelchair users with medical disorders, including brain anomalies, failing respiratory systems, chronic inoperable cardiac conditions, issues with swallowing with two of them being PEG-fed full time, liver and kidney issues and osteoporosis. All three have full health insurance with no exemptions due to disability. They have had cover since birth. One also has a metabolic disorder and requires a specialised blended diet. Despite all of the issues the three children have stacked against them, they are very happy. Two of them are now young adults and live to the best they can thanks mainly to their carer - their mam.

One younger child had hip surgery at the age of nine and has not walked since. The surgery was not successful and multiple surgeries were required afterwards due to screws loosening in the femur and plates cutting into the hip socket. I think it took an additional eight surgeries, which left the child with a shortened leg and a hip set at 90°.

One of the other children has kyphosis, scoliosis and a subluxed hip. He has been seen privately in the Blackrock Clinic and was told he would need surgery but would have to go to Crumlin due to the complex needs. He endured a wait of three years for an MRI under general anaesthetic. Then Covid happened and the surgery that was meant to take place in 2018 only took place in October 2021. The bone had been left for so long that the ball joint had worn down to the socket. The femoral head had to be removed and a titanium shoulder put in. This was supposed to leave the child pain-free but with a shorter leg. This was not the case. After numerous appointments and feeling that nobody was listening to her, my constituent got a spinal appointment only in July 2023 when the doctor informed her that the pain was from the hip and not the spine. He was referred back to the hip surgeon in July 2023. In December 2023, the child was brought to accident and emergency at Wexford General Hospital where he was to have an X-ray. The parent was told the following day that orthopaedics in Waterford were not taking on the case at this stage and that she would have to go back to Dublin. Numerous phone calls were made to the secretary that yielded nothing but the parent saw the doctor face to face at her other son's appointment and asked that he be seen urgently. She was told that she would need it in writing that local services were refusing to see him. A letter was forwarded to the doctor but she was told by the secretary that a referral letter had gone to Cappagh. The family has since seen medical surgeon Noelle Cassidy in Cappagh who told them that due to the child's complexities, he would require the backup services of the Mater Hospital. The child is currently awaiting pre-ops. During all this time, the child has suffered with recurrent canker mouth ulcers that spread to his throat in 2024. He has been to Caredoc, the GP and accident and emergency multiple times and has been given many different types of medications. The child needs an ENT appointment that the family has been told will take two or more years. The parent has requested medical records from Crumlin.

I will finish by sharing the final part of the email this parent sent to me:

I am at a stage of frustration and I'm worn out. The failure of the health system is a joke. I am a carer, nurse, physio, dietitian, speech and language therapist, advocate. I preform minor surgery at home when feeding tubes dislodge. I train nurses and carers in manual handling, food safety and then I’m the mum to do fun things, attend meetings, attend sports, games.

I could go on but that is what carers do for us. I ask the Minister of State to abolish the means test and take the fear away.

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