Table 6 An explicit IBD care pathway
A more explicit IBD care pathway | |
1. | “…but I kept being put back to day one in waiting lists in the next department, and felt there was a real lack of co-ordination between different departments in the hospital for outpatients, and was regularly made to feel that every department worked in isolation and only interested in their own deadlines…So I would improve the NHS by making different departments working together more rather than in tunnel vision. “(P145) |
2. | “I have never seen the IBD nurse. I would like to know if he is available to me. Not sure who to ask.” (P234) |
Access to psychological and dietician services | |
3. | “I think more psychological help should be available, especially for people diagnosed as children, teenagers or young adults as it impacts your whole life and is still a taboo subject so it's difficult to talk about it” (P179) |
4. | “A review by a dietician who is knowledgeable about IBD and allergic reactions of gut to chemicals”(P20) |
Better information and practical support on living with IBD | |
5. | “..more advice on how to live with IBD.”(P67) |
6. | “Starter information pack giving new sufferers advice about lifestyle and diet.” (P170) |
7. | “NHS care would also be improved by holistic approach that tackled non bowel symptoms such as fatigue.” (P213) |
Better education for GPs and A&E staff | |
8. | “There needs to be more belief in what patients are saying to health professionals about our symptoms and pain. I have felt on so many occasions that I'm not being believed. It minimises my pain and agony which affects my belief and trust in myself and my doctors too… It also makes me feel like I need to be on top of my game all the time, fighting and advocating for myself and the correct treatment. Sometimes I feel like its 'them vs me' when we should all be working for the same end goal at getting me better. This can be even more exhausting on top of the disease itself.” (P135) |
Availability and coordination of IBD care facilities and services | |
9. | “When in hospital I think putting u in a ward with a shared toilet is a bit hard.”(P184) |
10. | “I have had very little follow up care after being diagnosed in 2012. My referral has been lost twice and I am still not under the care of a gastroenterologist or on any medication despite my diagnosis! (P768) |