Advanced care for ACHD patients

We have a vertical model of treatment at Royal Brompton Hospital, where we treat patients with congenital heart disease from pre-birth (fetal) to adulthood. As part of this, we treat patients on an advanced care pathway, offering you and your family as much support, information and guidance as you need to prepare for the potential worsening of your condition.  

Why would I be on an advanced care pathway?

If you are put onto this pathway, it means that you have congenital heart disease and that you fall into one of three categories:

  1. Worsening symptoms – this can include:
    1. Increasing breathlessness
    2. Reduced exercise ability
    3. High level of fluid retention
    4. More frequent hospital admissions
  2. You are under consideration for a heart transplant or have been turned down for a transplant
  3. Your health is deteriorating but no further surgical options are possible

Your assessment

When you have your assessment, our ACHD team will talk to you and your family about the severity of your condition and what treatment options are available. We will also give you the opportunity to talk about Advanced Care Planning.

Why is this helpful?

Advanced Care Planning means that you have plenty of time to think about what choices you want to make about your care, and to have a pre-prepared plan of action in place. It: 

  • helps you prepare for the future in a positive way
  • helps us make sure you are getting all the help you need
  • gives you the opportunity to think about, talk about and write down your concerns
  • lets your family, friends and medical team know what is important to you if you become more unwell.
  • allows you the time to discuss treatments that may help you and treatments that you want to avoid
  • provides you with an Advanced Care Plan folder to keep track of your wishes.

Your Advanced Care Plan folder will help communicate your wishes to the different medical teams who will be looking after you. When you are at Royal Brompton Hospital, you will be supported by the adult congenital heart disease (ACHD) team, and you may also be referred to other teams such as palliative care (and your local Social Care Services). When you are at home, you will have your GP and community nursing team to support you. They may also refer you to other support teams in the community for more help if you need it.

End-of-life support and care

When all appropriate treatment from your Advanced Care Plan folder has been given and you are still unwell or deteriorating, we may discuss with you end of life options. We understand that situations like this can be difficult to think about but being able to plan ahead to make sure what you want to happen is very important.

We will talk with you and your family/carer to explain what options are available to you, and to find out what your wishes are. We will give you treatments that will focus on your comfort, and talk to you about where you want to spend your final days. We will also talk to you and find out what support you will need.

Where you want to be

You can choose where you want to spend your final days, and can change your choice at any time. If you choose to stay in hospital, our ACHD team (doctors and nurses), palliative care team and others will support you and your family.

If you want to stay at home, your GP, district nurse team, community palliative care team and others will be on hand to give you support.

You can also choose to go to a hospice, where you will be taken care of by a palliative care team. This team are specialists in relief of symptoms and end-of-life care.

When someone is coming to the end of their life they become weaker, drowsy and not want to eat or drink. This can be worrying and scary, but you will have teams around you and your family who will offer you support and guidance at this time.

Your family/carer will be supported by our bereavement service from our PALS team, as well as our ACHD team.

Contact the team

If you would like further information on our advanced care pathway, please contact the ACHD team by emailing or calling 0207 351 8764.