Questions that you might want to ask at the Cardiac Clinic
We all have questions relating to the diagnosis and treatment of our children that we would like answering, but appointment time is usually short and it is easy to forget something when you are there. It is always a good idea to write down your questions a few days beforehand and refer to your list at the consultation. Below are some suggestions which might help point you in the right direction.
Don't forget to take a paper and pen to write down the answers or get the consultant to write down any complicated names for you - you can always look them up later if you want. Don't be afraid to ask something if you want to know, nobody expects you to be an expert or to know all the terminology so it doesn't matter if you've asked it before, what is important is that you understand what you need to.
Cardiac units also have access to other professionals who may be able to assist you with any problems or concerns you have. These include social workers, educational psychologists, play therapists etc. who can help you with things such as benefits, respite care, education and helping siblings. If you are not offered the opportunity to speak to any of them, do ask the cardiac liaison nurse or clinic staff how you can arrange an appointment.
- Do you understand the diagnosis and what it means?
This is a good opportunity to clarify any details that you may be unclear about. Perhaps to have explained any terms you may have heard mentioned that you are not familiar with.
- Do you know what the current prognosis is?
As treatments and techniques advance a patient's prognosis may change. Do you know and understand the current prognosis?
- What is the future management of the condition likely to be?
Do they need any medication?
Will surgery be required?
How often will they be seen by a cardiologist?
Will they be seen at the cardiac unit or a clinic at the local hospital?
If the condition is inoperable are there treatments that may improve their quality of life?
At what age will they have to transfer to an adult unit? And where would that be?
- If surgery is likely, do you fully understand what?
Do you know what operation will be performed and why?
Do you know when this is likely to be? What, if anything, does the timing depend on?
Do you understand the risks involved and likely outcome?
- Do you know what signs and symptoms to look out for?
Are you aware of any possible symptoms that may indicate a change in condition?
- Do you know who to contact if you have concerns about your child's condition?
Do you know who the best person to contact is? Who is the first point of contact?
Do you know the name of the contact and their contact number?
- Do you know what to expect in later life?
Do you know what the future is likely to hold, especially if the condition is inoperable?
You may find it useful to share your anxieties - you may be worrying unnecessarily.
- Are you having problems getting a school or college place due to the heart condition?
If the local authority has concerns over medical needs perhaps a written report from the hospital will help.
- Does the school or college have questions about suitable levels of involvement in the curriculum?
The hospital may be able to provide information about the limitations (if any) that should be placed on your child, and the steps that should be taken if they become ill.
Can they provide reassurance to the teaching staff that a major dramatic event without warning is unlikely to happen?
- Does you son or daughter have a job, work in sheltered employment or attend a day centre? Or would you like them to, now or in the future?
Do you have concerns about the effect their heart condition will have on accessing these? This may be a good time to discuss the opportunities available beyond education.
Other Health Issues
- Does your child have any other health issues which may be affected or have a bearing on their cardiac status?
If your child has other health problems, do you understand how they can affect or be affected by their heart condition?
Are you aware of any tests (such as thyroid function), or vaccinations (such as flu), that your child should have?
- Do you have concerns about puberty, body piercing, drugs, sexuality, and relationships?
Do you need further information about any problems that may arise at puberty due to the heart condition?
Do you know the risks if your child decides to have their ears pierced (or anywhere else), and the precautions to take?
Are you concerned about the possible effect if your child was given recreational drugs by someone?
Would you like advice on how to help your son and daughter cope with their developing sexuality and relationships?
- Do you have problems getting your son or daughter to take medication or use oxygen?
Maybe you find it difficult to explain the need for compliance for fear of frightening them with understanding of their heart condition? Perhaps you would benefit from support on these issues from a trained professional.
- Do you have any concerns about your son or daughter's understanding of their heart condition?
Does your child have an understanding of their own prognosis, and perhaps fears of the future that you find difficult to deal with? Maybe it would help them to be able to explore their anxieties with a professional.
- Are you getting all your benefits?
Are you and /or your son or daughter getting all the benefits to which you are entitled? The benefits system is a complicated one, and subject to change, if you have any doubts about benefits, this is an opportunity to check that you are getting your full entitlement.
- Is there anything that could be done to improve your family life on a daily basis?
Are there any adaptations to your home that would make things much easier for your child? Wheelchair access, stair lift, bath lift etc.
Do you get any respite care? Even if it's only a few hours a week to go shopping, it is in everyone's interests that you have some time away from each other.
- Are you able to take your child away on holiday?
Do you know what the limitations are with regard to taking a holiday with your child?
Are you aware that it is possible to arrange for oxygen away from home for a holiday in the UK, and some parts of Europe? (see Oxygen Therapy Topic Note).
Do you need information on the effect of certain climates on your child's condition?
Can you child fly? What are the risks?
How do you get insurance? The cardiologist will need to provide details of your child's condition to the insurance company. (see Travel Advice Topic Note).
- Do you need a break but have no-one to look after your son or daughter?
Do you know who to approach to access suitable respite care so that you can go away? Obviously you need to be confident that anyone caring for your child is qualified and capable of managing their medical needs.
- Does your son or daughter have the opportunity to socialise?
Do you have any worries about your child's opportunity to socialise with other people? Would you like suggestions on how this might be achieved? Do you need information about their medical condition from the hospital, that might reassure friends and relatives who might be accompanying your son or daughter?
- How are other children in the family coping with their sibling's condition?
Parents are sometimes so involved with the care of their heart child, that it can be easy to underestimate the fears and concerns of the child's siblings. Do you need any support or advice on helping your other children in their understanding of their sibling's condition? Would you welcome advice on how to prepare them for the future?
Having more children
- Are you considering having more children and want to know the risk of having another child with Down's Syndrome and a heart defect? Or do you want to know if there is a risk for any of your children?
If it has not already been offered, the cardiac unit may be able to arrange for you to see a genetic counsellor who can discuss your risks and options for future pregnancies - if not ask your GP.
They are ideally placed to provide cardiac screening in future pregnancies to confirm if there is any structural abnormality in the baby's heart. (see Pre-Natal Screening and Testing for Cardiac Defects Topic Note).