Information about Living with a Heart Problem
Whether you have a child with a heart problem or you are an adult with congenital heart disease it is helpful to have some practical help and advice. This section of the website will cover lots of different aspects of living with a heart problem. This list is not exhaustive and we recommend that if you have any questions that you contact the cardiac nurse specialists or you can visit our useful links page and have a look at the information provided by local and national charities. LINK
Getting help and support
We have several teams of Cardiac Nurse Specialists in the North West with dedicated telephone helplines for both children and their families and adults with congenital heart disease (ACHD). They are run by the nurses who are experienced in looking after children with heart problems or adults with ACHD. You can contact them about anything related to your heart problem. This service is available for everyone regardless of where you see your heart team.
The helplines are available Monday to Friday. They are not open on bank holidays or over the weekends but if you leave a message, they will still pick this up and call you back as soon as they are back in work.
You can call the helpline about anything that is worrying you. It doesn’t matter how complex or minor the problem is. It’s important to leave a clear message about the problem you need help with. Remember to speak slowly and clearly and include your child’s name or your name, date of birth and their hospital number or their NHS Number if you have it. It’s important to leave a contact telephone number so the nurses can call you back.
Click here to see all of the contact numbers.
Emotional support
Looking after a child with a heart condition or living with a heart condition yourself can make you feel anxious and isolated. These feelings are normal but can seem overwhelming at times.
Please reach out to our cardiac specialist nurses if you feel you need additional help and support with coping with your own or your child’s heart problem. They can sign post you on to other services such as clinical psychology, play therapy or specialist complex needs teams to help if needed. Please see our video on what support is available and how to access it. (Link here).
There is help available via the NHS including free Talking Therapies. These services are for people 18 years or over. You can also self-refer via the NHS website. For information about how to access mental health care for adults and children and how to access talking therapies click here. You can also speak to your GP about how you are feeling.
Keeping active
Reduced exercise capacity is common in children with heart problems and adult patients with congenital heart disease. This may be due to the effects of the condition itself, but may be due to other factors, such as becoming unfit due to long term inactivity. Physical activity is important to maintain a healthy lifestyle. It is recommended that everyone does something to keep themselves regularly active. If you have not been active for a long period of time, it is important to ease into activity gradually. Remember you may be capable of doing more than you think! Have a look at our patient information leaflet for more information and speak to your heart team if you want specific advice for you. (link to patient information leaflet)
Additional Information
Eating a healthy diet
Everyone should aim for a well-balanced diet. Strict diets are hard to sustain long term and may not provide the balance of nutrients you need. Healthy eating isn’t about cutting out or focusing on individual foods or nutrients. It’s thinking about your whole diet and eating a variety of foods in the right amounts to give your body what it needs. Keeping to a healthy weight is important when you have an underlying heart problem. Eating a healthy diet also helps prevent you developing additional heart problems as you get older.
Have a look at the information provided by the British Heart Foundation for more information: Healthy eating – reduce your risk of developing heart disease – BHF
Prescription costs
Unfortunately, adults with congenital heart disease will need to pay prescription charges for any medications that they take. If you need to take several then this can be quite expensive. There are ways that you can reduce the cost by applying for prescription pre-payment certificates (PPC).
You can apply for a 3, 6 or 12 month pre-payment certificate. This will cover all your prescriptions for that period no matter how many you need.
This means if you’re going to buy 4 or more prescriptions in 3 months, or 12 or more prescriptions in 12 months, it may be cheaper to buy a PPC. You can pay in 10 monthly instalments if you buy a 12 month PPC.
Follow this link to find out how to apply for a PPC and what the current costs are Buy an NHS Prescription Prepayment Certificate – NHSBSA
Travel costs
If you are unable to get to your hospital appointments and need help, have a look at our useful links (link to page 9.1) page where you will find information about organisations that may be able to help and how to contact them.
If you have been referred to hospital for treatment or tests you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS). For more details about this scheme click here: Healthcare Travel Costs Scheme (HTCS) – NHS (www.nhs.uk)
You can also speak to your healthcare team as in certain circumstances hospital transport may be ordered to help you get to your appointments.
If you have an extended stay in hospital and need help with car parking costs speak to your heart team or the ward staff as some hospitals are able to give a discount voucher or can offer free parking in certain circumstances.
One off grants
There are some organisations that offer one off grants or support funds to help people through a difficult time financially. These are one-off grants for those in financial difficulty that meet the eligibility criteria. They can provide funds for items and/or expenses that can make a real difference. Have a look at our useful links: Page 9.1
The Children’s Heart Federation has a lot of information here: Children’s Heart Federation | Financial and Grant guidance (chfed.org.uk)
Going on holiday
Having a heart problem should not prevent you from travelling and enjoying time on holiday. Only in very rare circumstances will you be advised against this. You might need to do a bit of extra planning particularly if you have a lot of medical concerns or additional needs. It’s important to get travel insurance as soon as you book your travel so that if anything changes to your health, meaning you cannot travel, you will be able to make a claim and hopefully get your money back. Most people should be able to go on holiday and have a fun and enjoyable time.
If your oxygen levels are lower than normal you may need to go for a test to see if you need any extra oxygen when travelling on an aeroplane. The cardiac team will refer you for this test if it is needed.
Here are some links that provide more information about travelling with a heart problem and provide information about travel insurance and companies more willing to insure people with long term medical problems:
Little Hearts Matter provide a comprehensive list of things to think about when travelling with a child with a single ventricle : Travel & Trips – Little Hearts Matter (lhm.org.uk)
The Children’s Heart Federation provide information when travelling with a child with a heart problem: Planning-a-Holiday.pdf (chfed.org.uk)
The British Heart Foundation provide information for adults: 11 tips for going on holiday with a heart condition – BHF
The Somerville Heart Foundation also provide travel tips for people with congenital heart disease. You may need to register with them to get access to all of their advice, which is free to do: Somerville Heart Foundation Support & Services
Looking after your teeth
Bacterial endocarditis is a rare infection that can damage the heart valves. In most cases it can be treated with several weeks of antibiotics straight into the blood stream via a drip. Some people may need an operation and sadly in rare cases, people can die from this infection. Some of the bugs that cause these infections come from the mouth. Whilst the number of patients who develop this condition is very small it is still very important to keep your risks as low as possible by keeping your mouth and teeth healthy. To find and NHS dentist near you click here: How to find an NHS dentist – NHS (www.nhs.uk)
Click here for tips on how to keep your mouth healthy How to keep your teeth clean – NHS (www.nhs.uk)
Click here on tips on how to keep children’s teeth healthy Children’s teeth – NHS (www.nhs.uk)
Going to school
Going to school for the first time can be a daunting thought for some families when their child has a complex health problem. Please call the specialist nurses if you need support or information for your school to help them understand your child’s needs.
Education, Health & Care (EHC) Plans
All children have a right to a mainstream education. Your medical team will not be able to recommend what type of school your child should attend. This decision can ONLY be made by the Local Authority as part of an EHC needs assessment. Your heart team can highlight the needs and impact of their heart problem in the school setting but they cannot recommend an EHC Plan. However, they can support and empower families through this process by providing any information as requested as part of this process. If you have concerns regarding the support your child is receiving in education, please speak to your school and the nurse specialists and where appropriate your local SEND.
Little Hearts Matter provide a lot of information and support from primary school to going to University for children and young people with a single ventricle: Education Resources – Little Hearts Matter (lhm.org.uk)
The Children’s Heart Federation also provide lots of information about going to school: Children’s Heart Federation | Caring for Heart Children (chfed.org.uk)
Fontan Forum
The cardiac team at Alder Hey Children’s Hospital run a Fontan Forum. This is for any child with a single ventricle and their families, where the child is ready to move from primary school to secondary school. It is run by the cardiac nurse specialists at Alder Hey Children’s Hospital alongside the clinical psychology team. You will be given lots of helpful information and advice about how to manage this change and what support is available. You can also meet other children and families going through this same journey. The Fontan Forum is for anyone with a single ventricle regardless of where you receive your care. If you would like to know more you can speak to your local heart team and ask them to refer you or you can call the cardiac nurse specialists on the helpline (link to 10).
Going to University
Going to University is both exciting and worrying at the same time. Especially if you also have a heart problem. As well as choosing where to go and what course to do, you also need to think about attending your usual follow up appointments and letting the university know about your heart problem. You can call the paediatric or ACHD specialist nurses for help and advice about going to University.
Little Hearts Matter have produced a leaflet for young people with complex heart conditions to help them think about what support they will need at University
Benefits
Some people may need to maximise their income through the benefit system. This can seem quite difficult with long and complex forms to fill in. There are organisations that can help you with this including:
The Citizens Advice Bureau Benefits – Citizens Advice and Turn2us Get support | Turn2us
They both have a lot of practical information and support including a benefit calculator to see what benefits you may be entitled to.
You may also want to look at Contact for families with disabled children. Help with health costs | Contact
Please check out our useful links page (9.1) for more links
Employment
The Somerville Heart Foundation have access to an Employment Lawyer who can provide free initial advice and is available to support adults with congenital heart conditions if they have concerns regarding work.
You can also email the Somerville Heart Foundation at email info@sfhearts.org.uk
Cardiac maternity services
If you’re an adult with a congenital heart condition and are considering pregnancy we recommend that you call the ACHD Nurse Specialists on 0151 254 3333 so they can arrange for you to be seen in your nearest cardiac maternity clinic to discuss what this means for you as an individual and how you can be supported during this time. This will help you make an informed decision and will enable the team to offer individualised care. It is important to not have an unplanned pregnancy and the team can talk to you about what contraceptive methods are safe for you to use. Questions about whether your condition can be passed on to any children you may have are also important conversations to have with your medical team.
Vaccinations
It is important for your child to have all of their vaccinations as normal. It is also important not to delay during the first year of your child’s life when they are often more prone to infections. By vaccinating them against serious life-threatening diseases you offer them some protection from unnecessary illness even though they may still get simple colds and coughs.
Some vaccines do cause a mild reaction, including a temperature, so should not be given within 2 weeks before cardiac surgery or 4 weeks after. Immunisations closer to surgery should be discussed with your heart team prior to them being given.
For adults it is also important to have the annual flu, covid and the pneumonia vaccine when prompted to have it by your GP. This is especially important during pregnancy.
If you have any questions or concerns about having vaccinations please call the cardiac nurse specialists and talk through what is worrying you so they can answer your questions. Alder Hey have produced a leaflet about vaccinations and frequently asked questions that you also may find helpful: Vaccination – Frequently Asked Questions (FAQ’s) – Alder Hey Children’s Hospital Trust
You can check when vaccination are due by looking at the NHS website here: NHS vaccinations and when to have them – NHS
Patient Hand Held Records
Having access to your child’s or your own patient records is something that can be very helpful. Unfortunately there isn’t one solution for everyone and some hospitals are providing individual solutions for their own patients. Some hospitals, for instance, are providing portals or patient apps where they can see their up to date clinic letters and results of investigations. Here are some examples of what is available.
MyMFT
Patients seen at any of the Manchester NHS Foundation Trust sites will have access to MyMFT.
The link to download the app is here: MyMFT: Your Patient Portal – Manchester University NHS Foundation Trust
If you see anything that you don’t understand – you can call the patient helplines and the nurses will help you to understand what the information means.
Care and Respond
Is an online platform where you can keep a record of all of your medical information in one easily accessible place. This can be used in an emergency to show other health professionals. This is called a health passport. You can invite your family or friends to be a part of your own network so that if you ever find yourself in a situation where you can’t respond your family and friends can step in and provide essential information to the doctors and nurses looking after you. You decide who can access your information. Find out more here: Care & Respond – Health and Wellbeing Through Teamwork
Hospitals
Alder Hey Childrens Hospital
Manchester Royal Infirmary
