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Original Feedback for Norfolk and Norwich University Hospital NHS Foundation Trust (NNUH):

1

Left without essential medication again!

I have cystinosis part of the treatment requires eye drops to be used to on a daily basis. In December 2022 I informed the NNUH Ophthalmology consultant and his secretary about needing a new eye drop prescription (unlicensed Mercaptamine eye drops, 0.55%). On 11 Jan 2023 I informed him of supply issues and reminded him a licensed version was available (Cystadops). A week before I was due to run out (Friday 27 January) a consultant from the department range me and said he was sorting the situation out. I asked several times if I would have the new eye drops before I run out and he said 100% several times. I spoke to my eye consultant secretary on the second and third of February and he did not know what was going on. He mentioned other treatment yet there are only two treatments (Cystadrops or Mercaptamine eye drops). When asked about other treatment he had no reply and to this day nobody at the NNUH has stated an alternative treatment, nor a specialist in this area (there is research in this area but certainly no other treatments). I did ask to speak to my consultant but this was ignored and no response was made to questions raised. I feel if you are patients get ill an are worth a better response. I left a message on CEO answer phone as nobody could tell me what was happening. The head of department spoke to me and informed me he had no idea what the process was for getting access to Cystadrops. He then said it was down to my consultant and could not do anything. If you were getting spokes repaired on a bike the head mechanic would help resolve issues if another staff member could not fix the problem. Medication was available at other hospitals and nobody could give me a reason as to why I was not able to get treatment. I put in a complaint getting a formal response 13 months later stating the new treatment was too expensive and not effective (I asked if finance was an issue however nobody informed this was an issue, did me reporting him to the GMC influence this decision). This is despite a NICE review of clinical studies showing that the licensed treatment was safe, effective and had good clinical evidence to support this view. The consultant stated the new medication was not as effective yet there are no studies to suggest this is correct, never mind peer reviewed studies. In fact it is reasonable to conclude an interim supply would be prudent until the situation was resolved, especially given the liability for NNUH if serious eye damage occurred. The consultant did refer me to a specialist however this was a general rather than a specialist referral. Therefore I was forced to play detective and work out the email of a cystinosis specialist who did what NNUH could not, sped up the process and focused on solution not excuses. I was still left without essential medication for 8 weeks which could have long-term consequences. This is the second time this has happened, a few years before I was left without eye drops for 3 weeks and got no reply to my complaint. When I made NNUH aware that a new supply of eye drops become available. a senior member of staff stated they could not supply unlicensed eye drops as there was a licensed version available (MHRA requirement). However the licensed version had been available since July 2021. In response to my complaint NNUH passed the buck and implied this was the fault of the MHRA as they could find no email from them advising them of this change. What is most frustrating other than my health being put at risk is that the reply to the complaint contains aspects which are not true: Namely: other treatments exist, this is not true and a secretary and senior member of staff repeatedly saying this, stating that I had been offered other treatments (not true, only treatments are the two eye drops mentioned above) and hiding the fact that finance was an issue. Even today there are no other treatments than those referred to above, so why not be honest? The NNUH stated previously that they were capable of managing the ocular aspect of Cystinosis clearly did not even understand the process of obtaining medications for it and put my eyes at risk on two separate occasions. By failing to act proactively NNUH have let me down. If they had done their job they would have referred me promptly rather after I had run out of medication. Given this error the consultant could have supplied Cystadrops on an interim basis until the specialist hospital had taken over prescribing the medication The specialist hospital was the exact opposite of the NNUH responsive, focused on solutions and showed they care through actions rather than implying it through words The hospital also failed to respond to a complaint. In particular they failed to tell me to stop taking a medication when I was an inpatient. After leaving hospital the GP called me stating I should start taking the medication again. Nobody told me to stop and nobody has responded to this complaint. The consultant did not apologize for mistakes only for me being in this situation. It is a bit like a child punching another kid and saying I am sorry for the situation you are in. The NNUH makes no sincere apology or apology of any note for mistakes which were made. It mention engagement could be better, rather than it was poor or below where they should be . Afterall a team could win 5-0 and say the performance could be better. NNUH values include excellence (must be a different definition to the Oxford dictionary), people focused (obviously not me in this instance), respect (requires honesty), integrity (requires being honest about treatments and decisions) and dedication (need to dedicate time to being proactive and showing they care without complaints being needed). I would like to thank the specialist hospital who were excellent. Also the poor response and choice by the consultant in question not to prescribe could have had severe fiscal implications. In particular the requirement for a cornea transplant, potential legal liability for loss of earnings (circa 78 week waiting time plus up to a year recovery) and any other distress caused. Perhaps the NNUH and other hospitals would have more funds if it did not require serious injury or death before action is taken. This is especially true in light of these comments 'Hospitals are cynically burying evidence about poor care in a “cover-up culture” (Rob Behrens, NHS Ombudsman, 2024). There are two other patients at the NNUH and taking actions to ensure lessons are learned would benefit many more. I adjust my actions to mitigate errors such as monitoring my blood pressure results in hospital, informing consultants tests that need to be done (white cell cystine, thyroid) and managing my medication if I am in hospital. I can only judge NNUH on my experience (changing Sirolimus from 4mg -20mg for no reason, failure to spot drug interactions, failure to inform of medication changes, slow action resulting in medication, poor communication, have to be reminded of carrying out tests). Despite this I have only been an inpatient 5 times in the last 20 years. So maybe you can understand why I am so frustrated that I have experienced quite a few similar errors both as an outpatient and inpatient! I may be a pain but I am passionate about the NHS and being a critical friend and holding Trusts to account is essential especially given the comments of Rob Behrens. Like football talk is cheap it is about actions. If NNUH does not deliver then my conscious is clear.