Nervously awaiting a momentous hospital appointment and going over your questions for the doctors as the wait drags on & on. Then you find out it had been cancelled weeks ago and you hadn’t been told. The theme of poor admin and lost referrals has marked Lucy’s hospital experience.

Hi everyone, 

I’m feeling really angry tonight due to the poor treatment I’ve received from the NHS once again. As a patient with multiple chronic illnesses, I simply want to be treated fairly without having to fight for basic follow-up care, but it seems that’s how it is for me now. I understand that mistakes can happen, but numerous avoidable errors have been made in my case and I feel it’s time to speak out, rather than keep letting it slide. As you might know, my consultant referred me for a PEG surgery assessment last July, but after months of hearing nothing, I was told that the referral needed resubmitting because it had gotten ‘lost’. I was really upset about this as I’d already waited longer than expected and now I faced an even longer wait due to their carelessness. Nobody explained how it’d happened or said they were sorry. I just had to accept it.

My second referral went through after a while and I finally received a letter from the nutritional team confirming that a consultation was scheduled to take place today between myself, the dieticians, senior nurses and a consultant. This was going to be a significantly important multidisciplinary team meeting to review my case and discuss the transition from a nasogastric feeding tube to a surgical PEG tube. I was really nervous about it as I find social situations quite anxiety inducing. It was overwhelming to think that I was going to have to sit in front of so many medical professionals at once, but I was also looking forward to having my say and voicing my concerns regarding the peg procedure. I knew this would be my chance to get my point across and ask all the relevant questions. I also hoped to politely remind them that I think a peg tube would make my everyday life a little less stressful, because living with an NG tube that likes to block and dislodge on a regular basis is really challenging. It was quite daunting to think that I had to attend a multidisciplinary team meeting to talk about my life with a feeding tube, but I knew that it was part of the process. I would not be listed for PEG surgery until I’d attended this review, so I was willing to give it my best shot. I felt so nervous but I spent all weekend mentally preparing myself and writing notes- making sure to write down all my thoughts and everything that I wanted to say.

I arrived at the hospital a few minutes earlier than my planned appointment time, and I sat down as instructed. I attempted to occupy myself by reviewing my notes, however my anxiety grew as time passed. I expected to be called in immediately due to the scheduled meeting, So I began to worry after waiting over 30 minutes. Despite trying to remain calm and reassure myself that there may be a delay, I couldn’t help but panic. When a nurse approached me and asked what I was waiting for, my anxiety worsened as she informed me that the multidisciplinary team had cancelled this morning’s reviews weeks ago, and I should have been informed before now. It seemed that they’d forgotten (or failed) to let me know and the nurse just simply told me to go home and wait for them to contact me. I couldn’t believe what I was hearing. I'd had no notification of the appointment being cancelled or rescheduled, it had simply been cancelled without further communication or rescheduling. I was extremely upset by being disappointed once again because of their incompetence. I left the clinic on the verge of tears because I had invested so much time and effort into something that ultimately was not going to happen. I had dedicated the entire weekend to preparing myself, only for it all to be for nothing. I understand that the NHS is facing challenges, but it is unfair for patients to endure repeated avoidable errors and be left in the dark like this. I’ve now no idea what’s happening next- still waiting for a PEG tube assessment that technically should have happened last year. 

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
Log in | Powered by White Fuse