Ms Jane O'Keeffe:

My name is Jane O’Keeffe and I am a 38-year-old mother of one from Cork. I will give the committee a brief history of how I became an amputee. Roughly this time three years ago, I was pushing my then five-month-old daughter in her buggy when my right hand started to get a bit sore. I did not think much of it at the time but it was still a bit uncomfortable a few weeks later so I decided I would go to a physiotherapist. She said she could feel something there but my right hand still looked exactly like my left hand, there was nothing visible, and I was getting relief from visiting the physiotherapist. She said it was probably the result of pushing the buggy too much and we laughed it off as a buggy-related injury.

After another few weeks had passed, I was still in a small bit of discomfort. I was waking every few nights with a kind of burning pain in my hand. I decided to go to see my GP. He referred me for an MRI even though he could not see anything wrong either. He suggested that maybe I had a ganglion cyst. I am in no way medically minded but when I saw the MRI image, even I knew there was something in my hand. A 3.9 cm tumour had perfectly filled the gap between the bones and tendons of my right hand.

I was referred to a plastic surgeon. When he saw the MRI, it was the first time I heard mention of the word "sarcoma". He said it may be a sarcoma or a giant cell tumour, which sounds awful but is actually benign.

I was then sent for a biopsy, which was by far the most painful thing I have ever had in my life. The results of the biopsy took longer than I had expected to come back and the longer it went on, the more I was thinking we might be dealing with something a little more serious than we had hoped. The biopsy had to be sent to London for testing due to the rarity of what I have. At the end of November, I was diagnosed with clear cell sarcoma. Sarcomas make up about one in 100 cancers and clear cell sarcoma makes up less than 1% of sarcomas, so it is incredibly rare. Approximately one in 6.5 million people are diagnosed with this.

Given the rarity of clear cell sarcoma, Cork University Hospital reached out to University College Hospital London for advice on how to proceed with my treatment. Because clear cell sarcoma does not respond to traditional therapies such as chemotherapy and radiotherapy, the decision was made on 10 December 2021, the day after my daughter’s first birthday, to amputate my hand four days later. Life since the amputation has been relearning everything I had taken for granted my whole life. Those things include dressing myself, tying up a zip, tying up my hair, tying a pair of skinny jeans, cutting a pepper, buttering a slice of toast, dressing Róisín, changing her nappy and, obviously, driving. I had driven a manual car my whole life and was driving one at the time of my amputation, which was rendered useless to me. On my discharge from hospital, I was told that I would qualify for the PMC, which would help towards purchasing and adapting an automatic car for my use. However, I was horrified to learn that because I only had one hand amputated, and not two hands, I did not meet the criteria for the PMC.

The cost of purchasing and adapting the car was about €32,000. Obviously, I did not have a spare €32,000 lying around. If I had and had not been diagnosed with cancer, I would have gone on a great holiday. With the help of my family, we managed to purchase and adapt a car. I have never once asked "Why me?" or got upset about getting cancer. The only time I have really got upset in the past two and a half years was due to the lack of support from the Government in helping me get back to being a normal, active citizen. I work as a teacher. I could not wait to get back to work but I felt that I was being met with roadblocks the whole way.

The stringent criteria relating to the primary medical certificate directly contravene the UNCRPD. The purpose of the UNCRPD is to protect, promote and ensure the full and equal enjoyment of all human rights and fundamental freedoms for all people with disabilities. There are 26 points in the UNCRPD, three of which are accessibility, personal mobility and equal recognition under the law. I do not think I really need to say more about the primary medical certificate and the UNCRPD.

Unfortunately, my cancer has returned, so we are not sure what the future will hold for me because it is now stage 4. I felt so strongly about the inequality with the primary medical certificate for single-arm amputees that I wanted to give up a day of my life to come here and speak to the committee along with everyone else. What I would like members to take from my speech today is go home this evening and set an alarm for one hour and for that hour, to do everything with one hand. Try to do up a zip, dress yourself, close the button on your skinny jeans, chop a pepper, make the dinner, butter a slice of toast or change a nappy. These are things that we have to do every single day because we do not have a choice. After that, please tell me that we should not qualify for the primary medical certificate.