The information on this page is for families in England only.
In this article
You and your child should be actively involved in creating a transition plan that sets out how this will happen and when. It should be person-centred and take into account your child’s needs, thoughts, plans and aspirations.
Part of the transition process should be supporting your child to look at where their ongoing healthcare needs can best be met and how this will fit in with their future plans .It can take some time to bring all the services together and its important to consider both long and short term goals.
What changes when your child moves to adult healthcare?
There are several changes that take place in healthcare as a child moves towards adulthood. The timing of these changes will vary depending on the needs of your child and arrangements in individual healthcare settings. These are likely to include:
- Different people responsible for care. Children’s and adult’s medical services tend to be quite separate. Usually only GP services work with patients across all ages.
- Health teams are structured in a different way. The way professionals work together may be very different.
- Less coordination among professionals. There is no equivalent of paediatric services to provide a link between health teams, therapy teams and social care.
- Professionals’ roles may be different in adult services. Titles may change, or the same title may carry different responsibilities. Sometimes there may be no equivalent adult service.
- The doctor-patient relationship changes as children grow up.
Support from the GP
For many disabled young people the GP will be the main health professional coordinating their care. It is therefore helpful for your son or daughter to build and maintain a good relationship with their GP as early as possible, and ideally before transfer to adult services.
GPs are required to offer an Annual Heath Check to all adults and young people over 14 on their register with moderate to profound learning disabilities, or those with mild disabilities and complex health needs. As well as checking your son or daughter’s general health, it can also be an opportunity to review any support from other health professionals from other services, such as physiotherapy, for example.
Mental health services
Young people who have been receiving support from the Child and Adolescent Mental Health Service (CAMHS) will transfer to adult mental health services if they need ongoing support. This transition will happen at around 16-18 years old, depending on local services.
Your child’s CAMHS caseworker should coordinate the process. An assessment should be carried out by both teams to decide what future help your child may need. Transfer between the services should be smoothly coordinated so that support does not abruptly end with nothing to replace it.
Consent and parental responsibility
Before a medical practitioner can examine or treat a child, they need consent. The way consent is asked for partly depends on what the medical practitioner plans to do.
If a GP wishes to look in our child’s throat they will ask your child to open their mouth. You may then need to encourage your child to do so. This is usually enough to demonstrate that they and you have given consent.
For more complex health care and treatment, there are some differences in the rules about consent for children, young people and adults.
Children under 16 years of age
Children under 16 years of age can give consent to medical treatment, providing they have demonstrated they have sufficient capacity to decide. This depends on their ability to understand what is involved in making the decision.
There isn’t a general test to assess a child’s capability and each case should be assessed based on the individual circumstances. When a child is not able to give informed consent, a person with parental responsibility can give consent for them.
Young people aged 16 and 17 years
These young people are presumed to have the competence to give consent to treatment for themselves. The Department of Health recommends that it is good practice to encourage young people of this age to involve their families in decisions about their care, unless it would not be in their interests to do so.
If a young person is incapable of giving their consent, for example, a young person who is severely disabled, the person with parental responsibility will usually be able to give consent for them.
If a young person between 16 and 18 who has sufficient understanding refuses treatment, the treatment may still be given if it has been agreed by a person with parental responsibility, or the Court, and it is in the young person’s best interests. It’s in this way they do not have the same legal status as adults.
Once a person has reached the age of 18, no one can give consent on their behalf. If they are not competent, health clinicians can provide treatment and care providing if it is in their best interests.
The Mental Capacity Act 2005 governs decisions made on behalf of adults when they do not have mental capacity. The Act says that a person must be presumed to have mental capacity unless it is established that they lack mental capacity. The Act also says that a person be given all practicable help to allow them to make their own decisions before anyone treats them as not being able to make their own decisions.
Where doctors act as decision maker, you must be consulted in any best-interests decision taken for your child. You should also let them know your child’s view as far as you are able. If there is disagreement, and you are not happy about a best-interests decision taken for your child, there are several options:
- Involve an advocate to act on behalf of your child to make the decision.
- Get a second opinion.
- Hold a formal or informal ‘best interests’ case conference.
- Attempt some form of mediation.
- Pursue a complaint through the organisation’s formal procedures.
If this fails, an application to the Court of Protection can be sought for particularly difficult decisions, or situations where there is serious disagreement between family members and services.
- Read about the NHS Ready Steady Go programme for young people with medical conditions.
- Information about transition in healthcare from Great Ormond Street Hospital.
- A video on transition to adult health services from Barts Health NHS Trust.
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