Working with your IBD team
How to work together effectively.
There will be times in your healthcare appointments when you will need to agree on the next steps. To help with this process, think about your goals, and the things that you want and include them in your personalised care plan (if you have one) or just write a list putting the most important thing at the top.
Once you have listed your goals, it is important to consider the different ways you might achieve them. Think about:
- What could be achieved differently?
- If it was achieved differently, how would this make you feel?
- If you can’t get exactly what you want, how much would be enough?
If you find yourself in a situation where you are put on the spot and have to negotiate there and then, you can always ask for more time to think. This will give you chance to prepare properly and discuss details with any other relevant people.
Look for the things that everyone agrees on. Consider any points on your list that you might be willing to give up if this means you can have more of the things at the top of your list.
Negotiating always involves an understanding and acceptance of what is possible.
Example scenarios
Imagine you’re developing a flare, but you’re worried about taking steroids again. Your doctor says: “From what you are telling me, I had better put you on a course of steroids.”
Here are some ways that you might respond:
“Before we can do that, can I ask about the pros and cons of this medication?”
“I am worried about this as it will be my third lot in 18 months. Can I make another appointment, in case the symptoms die down and I don’t need them?”
“I would like more time to discuss the medication with you.”
Imagine your condition has been getting worse and although your IBD team has changed your medication, your doctor says, “If this doesn’t get any better then a stoma may be the only solution.”
Here are some ways you might respond:
“What are the risks associated with this surgery?”
“What will the operation involve?”
“Please give me more information about having a stoma.”
“How long will I need to stay in hospital after the operation?”
“Will this surgery affect my sex life?”
“Will this affect my ability to have children in the future, or how a baby might be delivered?”
Think about what questions you want to ask and put them in order, with the most important at the top of your list. If you have a personalised care plan, you could put the list in there.
What to do if you are not happy with your care
While most people’s care and treatment goes well, sometimes things can go wrong. If you’re unhappy with your care or the service you have received, it’s important to give this feedback so improvements can be made.
In the first instance, it’s always best to discuss your concerns as soon as possible with the IBD team. They may well be able to sort out the issue quickly.
Most problems can be dealt with in this way but, in some cases, you may feel more comfortable speaking to someone not directly involved in your care. Either way, you can be confident that making a complaint will not have a negative effect on your future treatment.
Who can support you with making a complaint?
If your treatment is provided by Sheffield IBD team:
The Sheffield Teaching Hospital’s Patient Advice and Liaison Service (PALS) provides a point of contact for patients who have a concern, and either don’t know which member of staff or department to raise it with, or feel that they need to speak to someone outside of the department, or ward, to which their concern relates.
Contacting PALS can be particularly helpful if your issue is urgent and you need action immediately, such as a problem with the treatment or care you’re receiving while you are in hospital.
You can get in touch with PALS by calling 0114 271 2400 on Monday to Friday from 9.30am - 4pm. At other times, you can leave a message
which will be responded to the next working day.
You can also email PALS at sth.pals@nhs.net.
If your treatment is provided somewhere else:
You can find the PALS service in your local hospital on the NHS website.
Read more about the support available if you want to make a complaint.