Take charge in the first 90 days after a long-term diagnosis

This guide is for adults in the UK who have recently been told they have a long-term condition, such as diabetes, asthma, COPD, heart disease, arthritis or a neurological condition, and for the people supporting them. The first weeks often bring a flood of information, appointments and practical questions about prescriptions, work, driving and money, at a time when you may feel shocked or worried. You will build a clear picture of your condition, a working relationship with your care team, a personal care record and a plan for the practical side of life. At the end of 90 days you will know who to contact, what to watch for and how to keep your condition part of your life rather than the whole of it.

What is inside

• Full step-by-step method9 detailed steps with decision points
• Ready-to-use templatesQuestions for your next appointment · Letter to your employer asking for reasonable adjustments · My condition at a glance (for family or a carer)
• Timed action plan8 stages from “Week 1” to “Day 90”
• Costly mistakes to avoid4 traps and what to do instead
• Complete checklist12 items to tick off
• Insider tips and fixes4 tips and 4 common problems solved

Step by step

1. Get the essentials clear in writing

   Ask your GP or specialist to confirm the exact name of your diagnosis, what tests it was based on and what happens next, and write the answers down or ask for a letter. Check your GP record and test results in the NHS App or your GP's online service, where available, so you can see what has been recorded. Ask who your main contact is, such as a GP, practice nurse, specialist nurse or clinic, and how to reach them between appointments. Ask specifically which symptoms mean you should call NHS 111, contact your GP urgently or call 999, and keep that list somewhere visible. Use trusted sources such as the NHS website and the national charity for your condition rather than forums or social media. If you feel overwhelmed, it is reasonable to ask for a follow-up appointment just to go over questions.