Depending on your rare condition, you or the person you care for, may:

• need a lot of ongoing care, treatment or investigations
• have long periods where you have relatively few appointments
• be in a programme of being routinely ‘monitored’
• be expected to make contact with healthcare professionals only if something changes

How much involvement you have will vary. However, there may be times when coordinating your own or someone else’s care feels like ‘a full-time job.’

It is helpful to remember that ideally healthcare should enable you to have the care and treatment you need with as little interruption to your daily life as possible.

If you need help with coordinating care and appointments, ask your specialist doctor or nurse if you can have some help.

Preparing for appointments

Think ahead to what you hope to get out of an appointment. This will help you feel more prepared both practically and emotionally.

What is the appointment for?

Use your smartphone notes (or have a dedicated notebook) to write things down that you want to raise. Take this with you.

For example:

• are you expecting test results
• do you want to raise something specific that is troubling you
• are you wanting to ask about treatment options

Have a dedicated place like a notebook or phone notes to write down your questions. This means you don’t have to ‘hold them in mind’ in between appointments.

Do I want someone to go with me?

Consider taking a friend or relative to an appointment with you. There can be a lot to take in, and this can be harder to process if you are anxious, looking after a child at the same time as listening, or if the information is worrying. They may also be able to take notes for you or provide support afterwards.

Taking it all in during appointments

At the start, use your notes to help you summarise what you’d like to discuss. Your doctor might also do the same.

During the appointment you, or the person accompanying you, can make notes (on paper or your phone) to remind you of any:

• Test results or information about your health generally.
• Advice or recommendations about nutrition, medication, physio or your mental wellbeing.
• Contact details for people to speak to about any concerns that arise (especially ‘out-of-hours’ if needs be), for example, a specialist nurse.
• Next steps, including any information about a treatment/care plan, when to expect another appointment (and who to contact if you do not hear).

Self care after appointments

Going to hospital can be emotionally (and practically) exhausting. There can be lots of difficult feelings to manage.

Rewards help associate going to hospital with something positive, not just things that are difficult.

Rewards suggested by Rareminds’ workshop participants include:

• coffee and cake in the café next door
• visiting the shopping centre nearby or local charity shop
• having the day off school and hanging out
• ringing your best friend
• going to the park
• hot bath, candles and a ‘do not disturb’ sign
• visiting the library on the way home
• watching a film or programme of choice when you get home

Worried about being seen as a difficult patient?

If you have had previous difficult previous experiences with healthcare, it is very understandable that you might feel apprehensive about this happening again.

If you are worried that your doctor or nurse might misunderstand you, try to let them know that you have had a previous difficult experience. This might include having symptoms dismissed, or being ‘labelled’ in some way such as anxious, or demanding.

Understanding more about you can help them relate to you more effectively.

Coping with tests, scans & medical procedures

Scan-anxiety

‘Scan-xiety’ is a term used to describe the particular feelings of anxiety or agitation you might feel before a particular scan, and when waiting for results. It is a very common experience and can apply to the feelings before other medical tests or procedures too.

Before you go

Sometimes you might be sent information in advance. If you want to know more about what something involves you can contact the hospital department that is doing the test, or ask the doctor at the appointment.

If you have any worries about what it might entail or how you might cope, let one of the healthcare professionals know. They can then talk through with you how to deal together with any particular worry.

• Check what hospital the appointment is at as specialist scans and tests may not happen at your usual hospital.
• Plan your journey in advance (check for any travel disruptions).
• Distractions can be helpful both before, and while the procedure is happening. Children’s scanners often use videos. Some adult scanners allow you to take your own music/audiobook in.
• Recovery time is important. Procedures are emotionally demanding, and can also be physically draining. See our tips above for self-care after appointments.

Supporting your child or young person with appointments

Taking your child to hospital is always an emotional event, even if you feel well looked after and have a good relationship with their healthcare professionals.

Having to potentially witness your child have unpleasant tests or interventions can be very upsetting. You will want to be able to support your child, but this might mean at times you have ‘dig deep’ to put your own feelings aside. This can be very emotionally challenging, especially if you have to do this repeatedly.

Having people you can talk to that you trust and who can help you emotionally process what you are going through is important.

This might be a partner, parent, friend, or a professional like a counsellor, psychologist or other healthcare professional.

Great Ormond Street has lots of information to help your child cope and prepare for tests and being in hospital, including how to respond to questions and worries.

What? Why? Children In Hospital have lots of resources to help children prepare and cope.

Fear of needles is very common – amongst adults too.  Great Ormond Street has a useful guide on helping children (or adults) to cope.

Coping with waiting rooms

Hospital waiting rooms can be very busy, or very quiet. Either can be stressful.

Sometimes other people may be managing waiting in a way that feels unhelpful for you as an individual – particularly at a time when you are likely to already be feeling anxious or worried.

Difficult experiences & trauma

If you have had to deal with something that felt more than you could cope with (either physically, emotionally, or both) it can feel very traumatic. This might have happened as a result of the rare condition itself, because of a treatment or an intervention, a medical crisis/events, or the way in which you were given information, or spoken to.

Recognising Trauma

The effects of trauma are different for everyone. It might come out in your:

• Emotions – feeling more anxious, low, ‘up and down’ or more critical towards yourself or others than usual.
• Behaviour – changes to your eating, drinking, sleeping habits or self-care.
• Thinking – by becoming more forgetful, distracted or negative, having flashbacks/nightmares, or going over an event many times.

You may also feel more irritable and withdrawn.

What can help with trauma?

Talking through what you went through with someone who you feel safe with can be a very effective way of starting to ‘emotionally process’ what you went – or are going – through. This might be a trusted friend or family member, healthcare professional or a member of your rare-condition community.

Talking to others who may have had similar experiences can also help you feel less alone with what you went through.

When to seek further help

If upsetting memories, experiences or flashbacks are not easing with time, you feel very anxious about the possibility of a situation recurring, and how you feel is affecting your day-to-day life or sleep, do ask to be referred to a psychologist or counsellor who can help.

You can ask your specialist doctor or GP.

• Mind produces a leaflet on managing and understanding trauma, including how to deal with flashbacks, or panic attacks.
• Great Ormond Street has information about helping children deal with a traumatic medical experience.
• The British Association of Counselling and Psychotherapy (BACP) provide a helpful guide to coping with trauma, and how counselling can help.

We also give details of other support organisations in our section on Accessing mental health support.