"Totally disheartened"

Recently my daughter visited the Lister Center to be asked 'not to drop in again' and 'ask your mum not to phone here again please'. This was during a conversation with a nurse where my daughter was clearly desperate and at the end of her tether. She had been unwell for over a week and had tried relentlessly to phone during the day but stayed on hold for that long she was returned to the Crosshouse switchboard twice.

A week prior, on the tuesday, she was admitted to A&E with high blood sugar and ketone levels. She received a litre of fluids. She remained unwell throughout the week and readmitted on the following sunday, with high ketone levels and sent home with blood sugar levels of 20+. My daughter has previously had Diabetic Ketoacidosis (DKA) at a life-threatening level and spent over a week in ICU and in a coma. Hence, she is now very cautious when her ketones read above 1.5 and advice from her consultant is to attend A & E immediately.

The next day, Monday, she was reassured by a nurse that she was doing all the “right things” and to continue to do what she was doing. She felt better after the reassurance. The nurse also suggested she made an appointment to come back in when she was “feeling better” to catch up with a nurse. In the following days, she got in touch with one of the nurse team to arrange an appointment. The next appointment available to her was January 2019 on a Monday or Wednesday morning. My daughter's job means she could not attend appointments on either of these days/ times. The nurse is well aware of her job.

She agreed to keep in contact with the nurse team via email in the meantime. She then received an email which implied she would then need to make an appointment to receive an email – totally bizarre! The next advice she was offered was to make an appointment for Summer holidays 2019 - a whole 10 months in advance! My daughter’s Consultant always reiterates that she should keep in touch with the nurse as they are a great help. However, clearly, despite her best efforts she cannot speak to a nurse on the phone, via email (without appointment!) or in person, as she is now not allowed to drop-in.

We are left totally disheartened with this “support” from the Lister Centre and very unsure what to do now if she is unwell again.