Kirsty's Story: Living with Neurofibromatosis and Scoliosis

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Kirsty also identified potential improvements in how patients are treated. For example, patients with pancreatitis should be seen in a specialist pancreas centre, so they can get appropriate support. Patients should also be referred to a pain management centre and be seen by a gastroenterology dietitian. Kirsty talks about her experience following an incident where there were problems with care during the delivery of her third child following the administration of a Syntocinon drip. Kirsty describes the investigation process as being clouded in mystery and feeling like the organisation put her into a victim box without any concern for her mental state.

I started feeling really bad at work. One of the long-term effects of my condition is intense headaches – sometimes they go on for days at a time – and this was a really bad one that came out of the blue. Iwenthome, butstarted to feel worse.This is a new chapter for Kirsty – and I can’t wait to get into that NPD kitchen and have more exciting news! Kirsty went eight hours without being given antibiotics, with them administered eventually at 9pm. She was sent to a surgical ward where they said they had to put a stent into her kidney. Kirsty went for the surgery but then their mum got a phone call from the consultant saying that she needs intensive care after the operation due to the sepsis – which was the first time that the family heard the word. Chloe said: “I felt like it was the beginning of the end at that point.” But I just got on with it: I made friends with other children who were also going through treatment. You can also listen to our podcast which introduces the guide, discusses how it was developed, and future plans in this area of work. The podcast features Tracey Herlihey, Head of Patient Safety Incident Response Policy and Lauren Mosley, Head of Patient Safety Implementation, both from the NHS England National Patient Safety Team; Louise Pye, Head of Family Engagement, at HSIB; and Jane O’Hara, from the Learn Together research team, who is a Professor of Healthcare Quality and Safety, University of Leeds and Deputy Director of the Yorkshire Quality and Safety Research Group. Kirsty was an arms-open-to-everyone kind of girl, possessing the amazing skill at making everyone in her presence feel very special. She is sorely missed but never forgotten.”

I'm delighted to say she's now studying an SVQ in social care and hopes to pursue nursing in the future. I'm so pleased that I helped support her during these difficult times, and that I met someone who's so passionate about the role. I feel like I contributed to her decision to pursue this career and this makes me feel so proud.

Pancreatitis can be extremely painful but pain is subjective and can be difficult for patients to describe its intensity and impact and for health professionals to understand it. Patients are often given a pain measurement scale with a numerical score from 1 (no hurt) – 10 (hurts worst), and are asked to place their pain within that scale. However the score will mean different things to different people depending on their previous experience of pain. Kirsty feels a better method for communication pain needs to be developed. Kirsty’s amylase blood levels were outside the normal range, so she was sent for a magnetic resonance cholangiopancreatography (MRCP) scan, a type of scan that can provide detailed images of the pancreas. This test identified that Kirsty had what is known as ‘pancreas divisum’, a birth defect affecting the ducts that go from the pancreas to the gut. Pancreas divisum is rare – it is estimated to affect 5% of the population – and it is still controversial among doctors whether it can cause chronic pancreatitis. Indeed her previous doctors had identified Kirsty had this condition 5 years previously, when she had initially received a set of tests, but they dismissed it at the time as unlikely to be causing her symptoms. I was used to walking on my own so although it was great to have company and it certainly helped, it didn’t worry me when I was solo. I’d put my headphones in and listen to music.