"Worst Department in England?"

About: Leicester Royal Infirmary

I have had severe difficulties in getting the treatment I need from the Rheumatology department for the past six months. My treatments were changed from Etanercept and Diclofenac to Tocilizumab and Naproxen. The new treatments were not effective and my condition very quickly became worse as more joints became affected and general pain and stiffness in all joints increased. I contacted the department as soon as problems started but my requests to be seen urgently were either ignored or forgotten about. I contacted the department several times a week for several weeks with promises of appointments, but no appointment letters coming through the door. It took 6 months for the department to just refer me to orthopaedics. As my condition worsened, I asked my GP to step in to try to gain some traction for my case. I was prescribed depo-medrone which was ineffective, but the department had no interest in following my case up to see if the treatment was working. Meanwhile, I was taking the maximum prescribed doses of morphine and co-codamol to control pain. Until January I was relatively fit 26 year old and able to go for walks and exercise in moderation. By May, I was struggling on 2 crutches and by the middle of the month I was wheelchair-bound for journeys of any length beyond 20 metres. Fortunately, I was seen as an inpatient in LRI where I recerived good treatment from the general hospital staff but the usual dismal treatment from Rheumatology. I was admitted on a saturday with the understanding that I would be treated through the weekend and I would be out by Monday morning. The rheumatologist on call was MIA and would not pick up or respond to the ward doctors' calls. I was finally treated on monday after spending two days in a ward twiddling my thumbs and wasting hospital resources. I was given a short short, high dose of solo (depo) medrone, to which I responded well. I was able to walk having been on crutches and in a wheelchair. I was told that an emergency follow up appointment would be booked for me ( to move me off steroids onto a DMARD) as my scheduled appointment this month was too far away. I had my doubts and the department didn't prove me wrong when they failed to give me an appointment. I had become almost immune to derisory amount of organisation within the department. I thought the department could not sink any lower but they were up to their usual tricks and cancelled my appointment for this month. Am I supposed to be stuck on steroids for another two months. Do you think this is acceptable? Do you have any system in place to ensure high priority patients are seen in good time? I rang twice last week and was assured that they would try to get me an appointment ASAP and that they would get back to me within a day... Which of course didn't happen. They could at least ring me to tell they tried. I want to be refered to Derby as I have no faith left in the Trust. My story has been shortened because I have only 3000 characters.

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Responses

Response from Leicester Royal Infirmary

Dear reviewer, We are truly very sorry to read your story here and can only offer a sincere apology on behalf of the department. We have forwarded this message onto the Head of Service for Rheumatology, however, as you have posted this anonymously, it would be hard for them to action anything for you. The best option with concerns as serious as you have noted, is for you to contact our Patient Information and Liaison Service (PILS) and log a formal complaint with the Trust. PILS can be contacted on freephone 0801 788 337, email pils@uhl-tr.nhs.uk or via our website https://www.leicestershospitals.nhs.uk/patients/patient-welfare/patient-information-and-liaison-service/contact-form/ PILS will take all of the details and ensure this is followed up with the service to resolve this as soon as possible for you. Kind regards Communications Team Leicester's Hospitals

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