When Katherine Thomas lost weight and suffered bouts of diarrhoea while studying at university, it was chalked up to the stress of exams. But after many appointments across the health system, Katherine was eventually diagnosed with Crohn’s disease.

In the following years, the now 49-year-old, underwent multiple surgeries to remove damaged parts of her bowel, drain and remove perineal abscesses as well as a hysterectomy and gallbladder removal (cholecystectomy).

“It made a significant impact on my day-to-day activity and the sort of career I could have - my whole life was ruled by it,” say Christchurch-based Katherine.

Continued flare-ups saw Katherine having extensive bowel surgery which left her with a stoma bag. “Getting comfortable with having and using the bag was a huge psychosocial adjustment for me. I’m now on long-term immunosuppressant therapy, but I feel it’s better than the alternative of more bowel surgery.”

Further diagnoses of chronic renal impairment (with several episodes of acute failure) and Bipolar disorder, as well as thyroid and hormonal issues, meant that Katherine was regularly seeking health intervention.

“I was spending a lot of time at the after-hours and if it was really bad I had to go to the Emergency Department (ED). I got to know some staff, so some had an idea of my history, but I often had to repeat myself and was asked questions about the medication I was seeking. It got to the stage where I would do anything to avoid an acute presentation, often delaying treatment to the point where it was potentially dangerous for me.” 

In 2015, Katherine was asked if she’d like to work with a specialist to create an Acute Plan, to record what actions she and her health care professionals recommend when she is experiencing an episode of acute illness.

“Pain management on a day-to-day basis is far less of a problem since my most recent surgery, but due to adverse reactions from painkillers in the past, there is only one medicine I find effective for my acute abdominal or post-operative pain. Before I had an Acute Plan in place to document this information I had some terrible experiences with people calling me a drug seeker.”

Acute Plans are shared and updated electronically by all members of a person’s health care team, which could be a GP, specialist, nurse or pharmacist. This helps health professionals work together to care for their patients.

Having an Acute Plan has made a huge difference to Katherine’s experience of accessing health services.

“If I get a registrar who doesn't know me they can look up my plan and see that things such as the use of medicines or Peripherally Inserted Central Catheter (PICC) lines have been authorised. It's made a huge difference because I don't get the whole 'drug seeker' attitude now.”

Having an Acute Plan in place has also helped Katherine avoid some upsetting and unnecessary encounters.

“On one occasion I sought help and was assessed as having a psychotic episode, so was placed in isolation at Hillmorton Hospital. However, my behaviour and appearance was actually related to a combination of severe dehydration, a bacterial infection and an acute flare-up of Crohns, which combined to create major electrolyte imbalances, weight loss and renal failure. It was not a simple bipolar episode.

“This wouldn't happen now, because the recommendation in my Acute Plan is to take a blood test immediately on presentation. This is vital as almost all of my manic episodes have been triggered or prolonged by medical issues, such as the use of certain medications.

As well as improving her experiences, the plan has empowered Katherine to be active in her own care. “Creating the plan has been a really inclusive process – I’ve been able to contribute along the way. If I encounter someone who doesn’t know me I can ask them to look at my plan without having to repeat my history again and again.

“Having a dual diagnosis of both mental and physical illness is difficult enough, it is important that both are considered in my treatment as they interact so closely.

Katherine’s experience of accessing care has also improved, and she’s getting to the right place faster than ever, which has been invaluable.

“I am extremely grateful for all the time and care put into this document by all of my medical and surgical specialists. Thank you also to the Clinical Directors of the ED and 24HS who took the time to contribute. The result has been extremely beneficial to me as a high-use patient.”