PATIENTS & FAMILIES
Caring shouldn't need a medical degree.
For families navigating the complex journey of rare and chronic diseases, we provide practical guidance on preparing for consultations, keeping records, and coordinating care across specialists.
Before your first conversation
To make the most of your consultation with healthcare providers:
- Diagnosis (if available)
- Discharge summaries from previous hospitalisations
- Current prescriptions and medication lists
- Laboratory reports (blood tests, urine tests)
- Imaging reports (X-rays, MRIs, CT scans)
- Genetic reports (if available)
- Previous specialist opinions or letters
- Family history of similar conditions
- Symptom timeline and progression
- Rehabilitation plans (if applicable)
Organising these materials in advance helps ensure that no important information is missed during your appointment. See our diagnosis pathway and genetic counselling pages for more specific guidance.
Questions worth asking
Prepare a list of questions to ask during your consultations. Consider asking about:
- What exactly is the diagnosis?
- How was the diagnosis made?
- What are the treatment options?
- What are the potential side effects of each treatment?
- How will the condition affect daily life?
- What is the expected long-term outlook?
- Are there any genetic implications for other family members?
- What support services are available?
- When should follow-up appointments be scheduled?
- Are there any clinical trials or research opportunities?
We recommend printing this list and bringing it to your appointment.
Keeping a care record
Maintaining an organised record of your family member's health journey can be invaluable:
- Keep all medical documents in one place (physical folder or digital file)
- Create a simple log of symptoms, medications, appointments and test results
- Use a notebook or digital app to track key information
- Include dates, times, and details of all interactions with healthcare providers
- Record changes in symptoms or responses to treatment
- Keep copies of all correspondence with doctors and hospitals
- Make sure you have contact information for all relevant providers
- Share this information with new healthcare providers as needed
A well-organised care record helps ensure continuity of care and reduces the risk of errors. Our rare diseases and chronic care teams can help you set up a system that works.
Caregiver support
Family caregivers play a vital role in managing rare and chronic conditions:
- Recognise that caregiving is demanding and requires support
- Take time for your own physical and mental well-being
- Seek respite care when possible
- Join caregiver support groups to share experiences and advice
- Communicate openly with family members about your needs and limits
- Learn about available resources and services
- Consider professional counselling if feeling overwhelmed
- Remember that it's okay to ask for help
Supporting yourself allows you to continue providing care effectively over the long term. See our caregiver support guide and financial support page for more practical help.
Travelling for care
For families coming to Delhi for medical care:
- Plan your trip in advance, allowing extra time for appointments
- Research accommodation options near the hospital or clinic
- Consider short-term rental apartments or guest houses
- Check if your insurance covers travel expenses
- Bring essential items like comfortable clothing, personal hygiene products, and entertainment
- Have emergency contacts and local information readily available
- Be aware of Delhi's climate and bring appropriate clothing
- Consider transportation options and costs
Our team can provide guidance on navigating Delhi's healthcare system and finding suitable accommodations.
Financial navigation
Managing the financial aspects of long-term care can be challenging:
- Pradhan Mantri Jan Arogya Yojana (PMJAY)
- National Health Mission (NHM) schemes
- State-specific health insurance schemes
- Disability benefits and pensions
- Special education funding
- Non-governmental organisation (NGO) support programmes
Our team can help identify and apply for relevant programmes based on your specific situation. Visit our financial support page for a full overview. We also recommend:
- Keeping detailed records of all medical expenses
- Understanding your insurance coverage and claims process
- Discussing payment plans with healthcare providers
- Exploring charitable foundations that offer financial assistance
- Seeking advice from social workers or patient advocates
FAQs
Start by talking with your healthcare provider to understand the diagnosis and its implications. You can also explore reputable sources such as:
- Ministry of Health and Family Welfare, Government of India
- ICMR (Indian Council of Medical Research)
- Department of Health Research
- Orphanet (international database of rare diseases)
- Peer-reviewed medical literature
Our team can help you find reliable information and interpret medical terminology.
It's completely normal to feel overwhelmed at times. Consider:
- Breaking down tasks into smaller, manageable steps
- Asking for help from family members or friends
- Connecting with caregiver support groups
- Speaking with a counsellor or therapist
- Using online resources and tools to organise care
- Remembering to take breaks and care for your own well-being
Our team is here to support you through this journey and can help connect you with additional resources.
Yes, we can help you navigate government programmes. Our team can:
- Identify which programmes you may be eligible for
- Explain application processes and requirements
- Help you gather necessary documentation
- Guide you through the application process
- Provide ongoing support throughout the process
While we cannot guarantee approval, we will work with you to maximise your chances of success.
Coordinated care involves ensuring all healthcare providers are working together towards common goals:
- Keep a central record of all diagnoses, treatments, and appointments
- Share relevant medical information with new providers
- Ask providers to communicate with each other when appropriate
- Request a care coordinator or case manager if needed
- Regularly review and update the care plan
- Ensure everyone involved understands the treatment goals
Our team can help facilitate coordination between different specialists and healthcare providers.
Medical review
Medical reviewer: To be confirmed before publication — no medical content on this page may go live without human medical review.
Review date: Pending | Next review: Pending
Sources: Content on this page must be verified against Ministry of Health and Family Welfare, ICMR, Department of Health Research, recognised Centres of Excellence, WHO or Orphanet guidance before publication.
Information on this page is for education and care navigation and does not replace consultation with a qualified healthcare professional.
Get help with care
ACCORD Asha
13, Gaushala Rd, Ansal Villas
Satbari
New Delhi 110074
India
Medical emergency warning: ACCORD's website and contact channels are not emergency services. For a medical emergency, contact your nearest emergency department or emergency service.