"Cystic Fibrosis Inpatient Experience"

1. Instances of poor communication when informing treatment decisions previously agreed i.e. desense protocol normal range 7 bags, for myself I was under impression this would be longer – On discharge informed future protocol might be repeating bags 5/6 and 7 for IV dose.

2. On admission, I could not make informed choice due to chest infection and breathing difficulty.

3. Lack of consideration (as above) for previous experience when starting treatment regime, prolonging my recovery and stay – continuity of care.

4. Once stabilised two days after admission seen by lead consultant where we could jointly agree treatment options necessary to support my recovery towards discharge sometime later this week early next week.

5. Rachel from physio dept, as always good daily input and support provided in all aspects of chest clearance to improve lung function. Ward staff and supporting teams’ hostess service excellent.

6. Diabetic care reviewed by Kirpal Marwa to satisfaction and confidence.

7. Hydration (sodium chloride) could be explained more thoroughly by purpose or if alternative options available, perceived as accepted practice without informed patient knowledge by those giving decision to treat.

9. Awaiting to see immunologist for clarity of desense protocol with respect to particular IV drug.

10. Latterly, informed of new protocol should the need arise on future admission i.e. repeating bags 5, 6 and 7 for IV dose.

11. Received Day of discharge IV competency training review by Josie Hussey, happy with outcome (small learning for myself, bad habit/practice identified /correcting behaviour).

Finally, completed IV care at home feeling some benefit from treatment, despite communication and protocol for treatment, reasured by Dr Rifat Rashid positive support for future care and treatment.