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Transition Of Care

CDH UK has made it’s position clear on the importance of good transition of care for patients and families. The first time we publicly put forward the views of our patient community on this important topic was at CDH2015 in Toronto where we presented the results of our patient survey on transition experiences. Since then we have presented at BAPS Congress and represented patients at various other meetings about this topic. We continue to encourage conversations with medical professionals and policy makers about transition of care and do all we can to help improve care and experiences.

What is transition of care?

Transition of care is when a patient is moved from one area of patient care to another and how it takes place. This can be moving from neonatal care to paediatric care, or from Paediatric care to adult care, or from hospital to home. These care ‘types’ can also be referred to as services, settings, or sectors.

What should I expect?

This is a question that is difficult to answer at the moment because there is no guideline or current standardised care pathway for transitioning from one care setting to another for CDH.

Currently, we see varying options and standards of care across the UK and in other countries.

What are the challenges?

We often hear of patients receiving uncoordinated care, or being left feeling isolated, alone and frustrated with their ongoing medical issues or needs.

Part of the problem (we feel), is a lack of knowledge on the condition in the adult sector and in General Practice, plus poor communication. This is most likely due to CDH being an uncommon condition that is mainly seen in it’s most difficult stage in the neonatal/Paediatric setting. We therefore feel that the Paediatric setting is where planning for transition is best placed.

Most children experience improved health as they grow from toddlers to young children and so are often discharged from Paediatric care at an early age. This can result in not knowing what to expect, or where to turn when problems arise later in life.

Patients relocate too, which can mean a loss of contact between hospitals and patients and healthcare professionals who were present at certain stages of life.

Unlike the Paediatric setting, the adult care setting has many different areas of speciality and so it can involve many different people and opinions, which can impact on the patient.

In addition, Doctors do not yet fully understand the potential ongoing issues or medical needs of the CDH population and so this also impacts on future healthcare. However, research and studies are ongoing and we are learning more all of the time.

We also see examples of good care and and it is these experiences we want to use to help to improve care across the UK and beyond.

What can I do?

  • Write down your concerns and questions
  • Contact CDH UK for helpful advice and information
  • Speak with your GP or main caregiver
  • Speak with other people to gain a variety of experiences – Our closed patient/family forums are a good resource for this
  • look at your local hospital website and see what services are available
  • Check patient reviews on Consultants and the Quality Care Commission website to check quality of care in hospitals

What is CDH UK doing to help improve transition?

  • First and foremost we are talking to patients and their families to find out about their experiences. We are also representing them at events where healthcare professionals can listen to their experiences and concerns and hear our views and recommendations to improve things and we can also learn about the challenges healthcare professionals face. We are also encouraging and funding research.

    We feel that there needs to be better communication between all care settings and services to help transition of care to be as smooth and stress free as possible for all involved. This includes transition from hospital to home and the needs of bereaved families too.

    As a result, CDH UK would like to see the development of clear pathways for patients and their carers during transition of care and beyond. In particular, we feel there are gaps and failures in the transition from paediatric services to adult services and a by developing a pathway based upon experiences, we should see an improvement in this important life milestone.

    This pathway should ensure that:

    • Patients continue to receive a good standard of care into adulthood
    • Patients and their families/carers feel supported
    • Patients know where to obtain relevant specialist care and advice if needed.
    • Patients feel confident in making decisions about their care and know where to obtain information about past care and experiences.
    • Patients experience a good quality of life
    • Patients remain at the centre of their care
    • Patients are not left to make uninformed choices

    We would love to hear about your experiences of transition of care and you can share them with us by emailing