Transition from children's to adult healthcare - for professionals

The transition from paediatric to adult services can be a frightening and confusing time for young people, their families and carers. Paediatric teams often have more flexibility and are able to take an holistic, whole person approach rather than a condition or organ specific focus. The new clinical teams often don’t have in-depth knowledge of a young person’s complex condition. It can also cause considerable workload, headaches and last-minute panic for the primary care team when services that have been in place for years are suddenly not available anymore. This is particularly true for young people with life limiting and complex conditions, who are often the most vulnerable.

Transition and transfer of care

There is a growing body of evidence supporting and informing best practice in relation to the transition and transfer of care.

Research from Northumbria University highlighted that during transition from children's to adult healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions’ medical control. The impact of this is increased non-elective admissions, more frequent medical emergencies, reduced medication compliance and poorer health outcomes.

The research found three features of transitional healthcare were associated with improved outcomes:

• appropriate parent/carer involvement
• promotion of young people's confidence in managing their health
• meeting the adult team before transfer

NICE have produced standards and guidance  on transition and transfer to adult health services. 

The preparation of a patient and their family for transfer to adult services is referred to as transition. The timing of transfer to adult services depends on patient preparedness. Most patients will move to adult services between their 16^th and 19^th birthday. Some young people will be ready to move to adult services at 16 years others may need extra support and time.

All professionals should strive to provide developmentally appropriate healthcare Northumbria toolkit up to aged 25 years. To assist with this the North East and North Cumbria (NENC) Transitions Regional Core Steering Group have developed an aspirational transition pathway known as the 'Journey to Adult Healthcare'. The NENC 10 Stage Transition Journey builds on the work of the North West Transition Network and Alder Hey NHS FT and is based on the 10 Steps to Transition Framework, with their support and permission.

 

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Transition toolkit

Further work has been done to enhance the regional aspirational pathway in consideration of the elevated needs of people with complex needs. This work has been led by a working group of the North East & North Cumbria Regional Core Steering Group.

Things to think about

Together for Short Lives webinar

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A parent's experience

Mental Capacity and Decision Making 

All care decisions must come from a shared partnership between the professional and the child, young person or adult. But for those who do not have capacity for their choices, or may lose that capacity in the future it is important that the right choices are made. As a healthcare professional you have a responsibility to encourage, support and facilitate a young person's participation in decision making and uphold their rights under the Mental Capacity Act (MCA) 2005. Mencap have developed a useful set of resources around mental capacity. 

For individuals who lack capacity to engage independently in the completion of an Advance Statement or Advance Decision to Refuse Treatment (ADRT) conversations are necessary regarding any known preferences and wishes and estimating what the person would want should be discussed between their relatives, carers and health professionals.  This should be done via the best decision making process in line with MCA 2005.  The agreed information should then be documented in a clear format and supported by MCA best interest decision making documentation

For more information and supporting resources and form templates about Advance Care Planning and Deciding Right please see Deciding Right Resources - Northern Cancer Alliance Northern Cancer Alliance

Gillick competency and Fraser guidelines

Gillick competency and Fraser guidelines help people who work with children to balance the need to listen to children's wishes with the responsibility to keep them safe. When practitioners are trying to decide whether a child is mature enough to make decisions about things that affect them, they often talk about whether the child is 'Gillick competent' or whether they meet the 'Fraser guidelines'. The Fraser guidelines still apply to advice and treatment relating to contraception and sexual health but the Gillick competency is often used in a wider context to help assess whether a child has the maturity to make their own decisions and to understand the implications of those decisions.

Professionals should always encourage a child to tell their parents or carers about the decisions they are making. If young people don't want to do this, you should explore why and, if appropriate, discuss ways to help them inform their parents or carers. More information is available on the NSPCC website (Gillick competence and Fraser guidelines | NSPCC Learning)

Transition resources

We also have pages for young people and parent/carers: