Why is it important?
How do you ensure effective coordinated care and holistic support for people with IBD, especially when newly diagnosed? One important step is to inform GPs promptly with details of the diagnosis and care plan.
This will ensure that GPs can act appropriately if there are any issues with prescribed medication and can support repeat prescriptions and monitoring requirements. They will also be able to avoid potential interactions with medication not related to IBD.
Adjusting to the diagnosis of IBD can have a psychological as well as a physical impact. This is also where GPs play an important role, as they can facilitate referral to community services that support emotional wellbeing. They can also work with the IBD team to prescribe and monitor medication (with shared care protocols where appropriate). In this way, GPs can also support people to return to education, work or normal family life as soon as possible.
It’s likewise important that patients are kept well informed about their condition and how it can be treated, in a clear and prompt manner. The better informed a patient is about their diagnosis, the more prepared they can be to adapt to the physical, social and psychological impact of IBD. Well-informed patients also show improved ability and confidence to manage their condition.
Communication of a diagnosis should be personalised and delivered in a manner that meets patient preferences. While face-to-face consultations remain the most common approach, the availability and convenience of virtual consultations can facilitate access to specialist expertise, particularly for patients in rural or island communities.
When receiving their diagnosis, people should have their condition explained clearly. They should understand the service being offered to them and know how to access ongoing support from the IBD team. Clinicians should be prepared to repeat this information as the person comes to terms with their new diagnosis.
It’s also important to give clear written information about IBD to people at the time and place of diagnosis, which reinforces what they are being told by clinicians. This information should be appropriate to the age, understanding and communication needs of the patient and carers.
Often, people feel much more able to take in the details of their condition, and the support available, once the initial anxiety surrounding diagnosis has passed. That’s why it’s also important to share with them the many other sources of information, which they can access at their convenience.
There are lots of voluntary organisations which can support people with IBD and their carers or family, both at the point of diagnosis and afterwards. They frequently offer many valuable services, tools and support – from practical, high quality information, including packs specifically designed for people who are newly diagnosed, to helplines and local networks of people in a similar situation. They can be a highly valued source of support throughout someone’s life with IBD. This includes patient organisations such as Crohn’s & Colitis UK, CICRA, and the Ileostomy & Internal Pouch Association.
As always, information should be provided in a range of formats, including face-to-face, written, visual, online and audio/video. Factors such as a patient’s age and literacy skills, fluency in a language, how overwhelmed or resilient they’re feeling, and any learning difficulties or sensory impairments should be take into account.