"Change of medication from intravenous to subcutaneous"

I have Ulcerative Colitis and have been stable on intravenous medication for 4 years. I first heard about the medication when I randomly received information in the post from NHS GGC. The letter in July 2021 stated that there was going to be a ‘slight’ change to my medication and that I would now need to self-inject every 2 weeks, instead of receiving an infusion every 8 weeks. I also received a letter stating the specialist IBD nurse would call me in early August.

Prior to this phonecall I attended my regular infusion appointment at the hospital, where the sister on the ward reassured me that I could not be forced to change my medication. This helped me feel relieved and in control. The specialist nurse had only spoken to me twice around five years ago and did not know me well. When I spoke to them, I expected to be able to ask questions. Instead, I felt like she was reading from a rehearsed script informing me about the injection that they was presenting to every patient. I found this approach very irritating, upsetting and patronising. When I explained the conversation I had with the sister on the ward, the specialist nurse reported that the sister should not have told me that, implying I was being forced to change my medication to a subcutaneous method and had no other option. This made me feel incredibly furious, desperate, and powerless. I felt overwhelmed by the sense of injustice and incredibly stressed by the phonecall.

I made clear my concerns about the huge change to my medication and that I would feel more disabled by having to take this myself every two weeks, with extreme complexity if I were to be abroad at this time. I made clear that I needed to speak with my specialist IBD doctor who knew me well. I did not feel the specialist nurse was put in a fair position to deliver such significant news. The nurse also advised on the phone that the subcutaneous injection was more effective than the infusion, which surprised me, and I asked them to send the medical journals to provide evidence of this. When I received this information, the evidence clearly stated that the effects are the same, not better. The nurse agreed to get my specialist to phone me and that they would not immediately change my infusion to the subcutaneous injection. After this call I considered disengaging from the IBD service altogether as I felt unheard and unimportant.

As a former NHS clinician in psychological therapy myself,  I found the way of managing this potential change in medication the opposite of patient-centred care. I also have friends who work in medicine and psychology within the NHS, all of whom were very disheartened to hear of my negative experience.

In the following weeks I attempted several times to speak with my specialist IBD doctor. Unfortunately, my doctor was unavailable for several weeks due to significant clinical demand, which he apologised for. As I work full-time and have my own vulnerable clients, I needed to reschedule this appointment and I was unable to speak with my doctor until early September 2021, a month after the first distressing call. The specialist nurse randomly called me two days prior to me speaking with my doctor to inform me that I would no longer be forced to change my medication. I did not appreciate the unexpected call.

Further challenge came when my doctor called 1.5 hours before and 1 hour after the allotted time. I was very distressed and upset in this call, as my stress levels had heightened after having to wait so long. My doctor explained that there was a medical emergency which caused this timing problem. One learning point here is that a simple voicemail to explain the situation could have saved a lot of stress.

In this call my doctor explained that I would not be forced to change my medication from infusion to self-injection and that there appeared to have been different ways of interpreting the information provided. When I asked if team meetings happened, they explained due to significant clinical demand, they had been unable to attend the last few team meetings.

My doctor also sincerely apologised about the way that this information was delivered and explained due to time constraints the nurse was asked to deliver this information. They also agreed to speak with the nurse directly. My doctor was aware that causing such significant stress could cause a flare up in ulcerative colitis, completely defeating the point of the exercise to maintain a stable medication plan. My doctor sent me a written letter soon after our phonecall expressing their apology in writing and that I do not need to change my medication at this point. I felt reassured that my doctor was taking a more patient-centred approach and I felt that they managed this challenging situation well.

My intention in writing about my experience is not to shame one member of staff. I am writing to make clear that miscommunication happens when clinical staff do not have enough time to complete their clinical commitments. Miscommunication and poor management of complex situations happens when staff do not have time to clearly consider information and discuss it carefully with senior colleagues. If the IBD team is overwhelmed to the point where patients are becoming so stressed and patient-centred care is completely failing, then you need more staff and staff need more time to provide good quality care. There is no point making cuts to services and trying to save money if it distresses patients to the point where they consider disengaging from the healthcare service, becoming drastically unwell and then requiring more complex and expensive care.

I would also like to recognise the excellent care I have received prior to this experience. My specialist doctor and the nurses at ward 7a in Gartnavel hospital have shown great care, communication, and flexibility.