Building a good relationship with those looking after you is important not just for your physical health, but also your mental health.

You may see the same healthcare professionals over quite a long period of time. Working out how best to ‘work together’ and understanding each other’s perspectives can take time.

Like any relationship there might be ‘ups and downs’ – communication is key!

Being your own expert & learning about your condition

Because rare conditions are by definition rare, not all (or many) healthcare professionals will necessarily know much about your particular condition.

As a result, people impacted by rare conditions often become ‘experts by experience’ as a result of research and knowledge gained over time. Different people have different feelings about this.

Early days

In the early days of your diagnosis, the idea of becoming your own ‘expert’ might feel very daunting. Having to ‘retell’ the story of your symptoms and concerns can be very frustrating, especially when you just want someone to know how best to treat you or your child.

Over time

As time goes on, you will hopefully find your way to healthcare professionals who have more experience and expertise in your particular condition. Having the support of condition-specific organisations can also be invaluable.

Knowledge is power – but use trusted sources of information

You may or may not want to become an expert in your rare condition, but research has shown that patients or carers who have at least a basic understanding of their rare-condition tend to manage better.

Sometimes, another family member may take this role on for an affected family member.

Being able to speak from your own lived experience and knowledge base can help you have a greater sense of ‘agency’ over your own health, care and treatment generally.

Working with your healthcare professionals

Feeling listened to and respected by your healthcare professionals is very important for your mental wellbeing, as well as your physical health.

If your main hospital doctor is not a specialist in your rare condition, they should be liaising with a doctor or team who is. It’s ok to ask this, or how many other people they see with your rare condition.

Do not ‘play down’ or dismiss any symptoms that are troubling you (or allow a healthcare professional to either).

• with many rare conditions it can take time to work out how best to understand, and treat, certain symptoms
• if you’ve previously had concerns minimised it can be difficult to trust your judgement – or that of your doctor
• by talking it through, you and your doctor can decide together if action is needed

Let your doctor know if you don’t understand something.

Some doctors just need to be reminded to talk more simply, explain something again, or use less medical ‘jargon’. If you are not sure what is being said – or need something to be repeated to help you understand, do go ahead and ask. Drawings and diagrams can also help.

How much do you want to know, and when?

Everyone is different. You might want to know as much about your condition as possible, or only when it is necessary. Ask your doctor if you would like to know more, or if that’s ‘enough for now’ . This will help you to manage information in the way that’s right for you.

Who do you see for what?

Not all healthcare professionals take a ‘holistic’ approach to living with a rare condition. They may focus just on their particular speciality (for example, hormones, bones etc), rather than think about your quality of life overall.

If you need help with an issue a particular doctor does not usually deal with, ask them who can help with it instead.

This might include help for:

• • mobility, speech or hearing
  • mental health
  • pain or fatigue
  • managing difficult symptoms, or behaviours
  • nutrition, feeding or diet

That doctor may be able to refer (or sign-post) you to another professional or team. If they can’t, ask them how you do access the support you need. You may for example need to go back to your GP and ask them for a referral.

Your condition-specific organisation may also be able to advise or support you in this regard.

Multidisciplinary teams – A ‘whole person’ approach

Some people with rare conditions are looked after by a ‘multidisciplinary team’ or ‘MDT’.

These might be based in one particular hospital that you usually attend, or over several different hospitals. Sometimes they are part of a specialist centre for a particular rare condition.

An MDT is made up of various types of healthcare (and sometimes also social care) professionals. They work together to make sure you get the best possible care. Many MDT meetings and discussions go on ‘behind the scenes’. It’s unlikely that you will ever be invited to go along to these as other patients are usually also discussed there.

Working with your MDT

A multidisciplinary team (MDT) is based around your particular rare condition and how it is impacting you or the person you care for. It may involve different professionals at different times according to need.

You are at the centre of the team. You are its most important expert.

Be as open and as clear as possible with the information that you provide about yourself, your overall health and how you are feeling physically and emotionally. This helps guide what an MDT talks about and recommendations they make. Your nurse or doctor can also ask questions to an MDT on your behalf and feedback what was talked about.

Finding something hard to raise?

Embarrassing or private symptoms or difficulties might feel easier to talk about with some healthcare professionals than others. Or you might feel a concern is being dismissed, or worried about how something might be perceived.

If you are finding it hard to raise something, think about who you might find it easiest to talk to. You could for example ask to speak to a male/female healthcare professional if that would help. Sometimes raising something via email might feel easier.

I don’t find my consultant that easy, but she’s very knowledgeable. I find the nurse specialist easier to ask questions to.

What do you need a doctor to know?

Non-specialist healthcare professionals may not know much about your rare condition.

Have a pre-prepared short verbal summary (ideally no more than a couple of minutes) about the rare condition and how it affects you or the person you care for. This will provide important information to help them make diagnoses or recommend treatment or medication. It also helps you feel more confident that they know what you need them to.

A summary should include:

• • the name of the condition
  • what it commonly (or can) cause in terms of symptoms
  • how it currently affects you as an individual
  • any treatments or medication you are currently taking (particularly if a medication is at an unusual dose because of your condition)

I realised each GP wasn’t necessarily going to be aware of my son’s condition, even though it’s in his notes. Realising I could just bring it up helped me feel more confident they’d bear it in mind’.

Managing care coordination

Life with a rare condition can mean lots of appointments, sometimes in very different locations, or far away. This could be for a short period (such as when you are first diagnosed) or ongoing.

There can be a lot to keep track of. Communication between people or services can be slow, or not always very efficient. Coordinating all this – and managing the impact on your daily life can be very demanding.

Good care coordination facilitated by healthcare professionals is increasingly being recognised as a key component for supporting the physical and mental health of those impacted by rare conditions.

The role of care coordinators

A care coordinator can help minimise the impact of managing your rare condition on your daily life. They can also help ensure healthcare (and sometimes social care) care professionals are all in communication with each other.

They can help:

• schedule appointments
• arrange additional support like interpreters, transport, disability aids
• liaise with other health or social care professionals
• be a point of contact for you
• act as a ‘bridge’ between you and other healthcare professionals
• help you access support from charities and support groups

Finding A was a godsend. She helped me keep it all together in the early days by chasing people up, rearranging appointments that were clashing. There was so much to juggle.

Currently, not everyone with a rare condition is routinely offered a care coordinator, even though many people indicate they would find it very helpful.

If you would find it helpful to have a named care coordinator, ask your hospital doctor or nurse if this is possible.

Even if they cannot allocate someone to you formally, there may be a professional who can be a ‘point of contact’ to help you make or change appointments for example.