Preparing for Transition

Transitioning through to adult services when a young person with Dravet syndrome reaches the ages of 16–18 can be a very unsettling process for many families, as it brings significant medical, financial and legal changes in the organisation of care for your child. All these changes can make transitioning into adult services feel very uneasy and uncomfortable. There is currently limited help and guidance available to support families during this period – and it is not always easy to access and find. Being prepared, and arming yourself with as much information as possible, will help you to navigate through this challenging time.

You can apply to become someone’s deputy if they ‘lack mental capacity’. As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf, including decisions about their personal welfare, e.g. medical treatment, how they are looked after, what schools and educational centres they attend, etc.

If deputyship is not obtained, legal responsibility for the young person with Dravet syndrome will revert to the local authority when they legally transition into adulthood at the age of 18. This does not mean that, as a parent/guardian, you will no longer be expected to care for your child. BUT it does mean that you will no longer have sole responsibility for decisions regarding their personal welfare.

Transition also ushers in significant changes to the medical care of the young person with Dravet syndrome. For example, after having years of working with the same medical team you they will move onto a new, adult-services team, who perhaps have less knowledge of Dravet syndrome than the paediatric team you were used to working with. Hospital appointments or A&E visits can become more challenging as they will be based in an adult hospital or unit that may not have the facilities that are appropriate to your young adult’s developmental stage. Hospital stays also become problematic as there is nowhere for a parent or carer to stay overnight on an adult ward.

The following two case studies provide insights and advice based on two very different and equally challenging experiences of coping with transition.

Guidance and Further Information on Transition

Whatever happens, you won’t be the first family to ever face these challenges. Parents who have been through transition are often an excellent source of advice and support. In addition, there are a number also useful websites that provide detailed guidance on what to expect during transition, as well as links for downloading relevant forms and information for a deputyship application. site:

Court of protection application forms and guidance:

Working Families website guide to transition:

Southampton Children’s Hospital Ready Steady Go programme – a useful example of transition of care from children to adult services which could be applied in other hospitals in the UK:

When to Start Preparing for Transition

To ensure that you are as prepared as possible, it’s a good idea to start researching transition and talking with your care well before your child turns 18. When they are 14–15 years old consider raising the topic at your annual EHC plan review and with your medical team. If you wish to apply for deputyship, start looking into this when your child is 15–16 years old, as may be a time-consuming and complicated process.

16-Plus Assistance Fund from Dravet Syndrome UK

What is it?

Intended to fill the gap in support for adults with Dravet syndrome, the 16-Plus Assistance Fund is available from Dravet Syndrome UK to pay for anything that will improve the life of an adult with Dravet. The limit on each application is £1,000 per family per year.

Am I entitled?

The fund is aimed at families who include a person with Dravet aged 16 and over. Each individual case is assessed for whether the needs are being met elsewhere. The applications are not means tested, but a letter of diagnosis is required as proof of the condition.

Any items of equipment or assistance that will improve the life of the adult with Dravet will be considered. Holidays will not be funded, but contributions towards the cost of a holiday may be considered if the trip can be shown to benefit the life of the applicant.

For further information and to apply click here.

Read a parent's story how Dravet Syndrome UK's 16-Plus Assistance Fund helped their daughter.