Leaving home and going to university is a challenge for many young people. Liam, 22, was diagnosed with Ulcerative colitis in the middle of his second year but is now back on track thanks to a supportive consultant, new technology, and being open about his condition
Liam, despite having to defer part of his studies. has just passed his 2nd year at Portsmouth University, where he studies economics.
A colonoscopy in April 2018, a date etched in his memory, confirmed that Liam had Ulcerative colitis
Liam spent the next week in East Surrey Hospital on treatment. This didn’t work well so while changing his treatment, Dr Azhar Ansari asked Liam to use the Patient Knows Best* (PKB) digital personal health record. Liam credits the online system with giving him easy virtual access to his healthcare team and allowing early intervention to prevent problems from developing into more serious ones.
The PKB systems logs blood tests and other results and gives an explanation of what they mean for him personally. It also allows Liam to track his symptoms so the team can react to any red flags. Being able to communicate without leaving home is a real bonus. When feeling unwell again, Liam’s medications were adjusted in consultation with Dr Ansari via the system. He also uses PKB on his phone in his appointments with his Portsmouth GP, where he gets repeat prescriptions. He can show changes in his medication and the interpretations of blood tests via the platform.
Liam has made some changes to his lifestyle. He doesn’t drink alcohol but can now eat what he likes. His strength is returning, so he is back clay pigeon and rifle shooting. He has also returned to his summer job in Caterham.
Liam is looking to the future.
Liam’s top tips for young people with IBD starting university or higher education:
- embrace being classed as a student with a disability and accept all the help that comes with it
- ask to sit exams in a separate room and take breaks to use the toilet without affecting the time limit
- ask for software to record lectures if your fatigue means you are too tired to take notes
- speak to your lecturers individually to explain your condition and how it might affect you as it fluctuates over time
- have a rest day if you feel drained, realise what you can and can’t do and listen to your body
- be open about IBD with academic and support staff, arrange a meeting with your head of year and any other staff that may need informing and explain the condition and how it affects you
- take all the support on offer. And if you do get ill, don’t worry about it. Get your health back on track so you can fully concentrate on your studies
*PKB is a digital health record used by some NHS hospitals in the UK. It is also one of the platforms being used in an NHS England pilot called the Local Health and Care Record Exemplars. It is hoped that the outcomes of the pilot will help develop digital health records for everyone in England, in line with the NHS plan. Digital health records are also being developed in Scotland, Wales and Northern Ireland
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