Preparing for Transition

Preparing for transition should begin at the time of the Year 9 review (when a young person reaches the age of 13–14). This might sound early, but it is important not to underestimate the time and effort involved.

Below we summarise the seven most important steps in the transition into adult services. You can find detailed information and guidance on each of these steps in our downloadable ‘Transition to Adulthood Guide’.

1. Legal Deputyship

A young person with Dravet Syndrome legally transitions into adulthood at the age of 16. 

In England and Wales, in order to continue to be recognised as primary decision-maker for their care, parents and guardians need to apply to the Court of Protection for a  ‘Deputyship’. In Scotland, parents need to apply to the Office of the Public Guardian for a ‘Guardianship’. In Northern Ireland, applications should be made to the Office of Care and Protection.

If deputyship is not obtained, legal responsibility for the young person with Dravet Syndrome will no longer automatically rest with you. This does not mean that, as a parent/guardian, you will no longer be expected to care for your child or support them to make day-to-day decisions. BUT it does mean that you will no longer have sole responsibility for decisions regarding their personal welfare. Therefore, big decisions may not be left to parents or the young person to make by themselves.

Visit our Transition Guide for more information on how to go about applying for deputyship in England and its legal equivalents in Northern Ireland, Scotland and Wales. 

For real-life insights into one mother’s experience of applying for deputyship for her son Matthew, click here.

2. Social Care

A young person with Dravet Syndrome is on a spectrum of need and will therefore require a level of support throughout their life. In our experience, parents/guardians of young people with Dravet Syndrome tend to be at the front line, leading and proactively driving care, with varying degrees of support from other professionals. Social care is one of the most important services for parents/guardians, as it is often the service responsible for liaising with, signposting and coordinating professional care from across multidisciplinary services.

The NICE website sets out best practice for social care, such as the importance of helping the young person identify a single practitioner, who should act as a 'named worker' – to coordinate their transition care and support. You can read the the NICE recommendations in full here.

You can also find helpful guidance on the Preparing for Adulthood website and the Mencap website.  

3. Medical Care

The transition from paediatric to adult care can be challenging for several reasons. Few adult neurologists know much about Dravet Syndrome, whilst access to multidisciplinary services and supporting resources becomes even more difficult for physicians to obtain. The good news is that the more proactive you can be as a parent/guardian, the smoother the transition of medical care is likely to be. Plan ahead, ask questions, seek appropriate referrals and arm yourself with information.

When the young person with Dravet syndrome turns 14 years of age start asking the following questions to all professionals:

• What is going to happen when my child/I am moved into adult services?
• Where will this be?
• Do you have a system for this?
• When can we first meet to discuss how their/my care will look?

This approach works well for all professionals and often plants a seed for them – reminding them to start thinking about the transition of this young person and what that will look like.

4. NHS Continuing Healthcare

Adult Continuing Healthcare is a package of care that is arranged and funded solely by the NHS when an individual, aged 18 or over, has been found to have a ‘primary health need’. In the context of Dravet Syndrome, this may include managing epilepsy, first aid for seizures, medication, mobility, feeding issues, managing challenging behaviour and many other potential health needs. Care may be provided in the person’s own home, a care home or other residential settings, depending on circumstances.

For independent advice on NHS continuing healthcare, visit the Beacon website. 

5. Educational and Residential Care

An important milestone for young people with Dravet Syndrome, as with all young adults, is the decision to attend school or college, or live away from home in a residential and/or supported living setting. In some cases, a young person may wish to live independently, or it may be felt in their best interests to do so. In other cases, a combination of various factors may mean that a setting other than home is the right move at that time.

Your local authority is responsible for funding places in residential education for children and young people up until the age of 25, if they have an Education, Health and Care (EHC) Plan in England, a Statement of Special Educational Needs (SEN) in Wales or Northern Ireland, or an Assessment of Additional Learning Needs in Scotland.

Visit the Preparing for Adulthood website for more information and advice.

6. Financial Support (Personal Independence Payments, Universal Credit & Carer’s Allowance)

When a young person with Dravet Syndrome turns 16, their disability living allowance will be stopped. They (or their parent/guardian) will be asked to complete an assessment for Personal Independence Payment (PIP) or Universal Credit (UC). These benefits can help with the extra costs of a long-term health condition or disability for people aged 16 to 64.

The best online resource for finding out about the financial support available to carers is the Citizen's Advice Bureau.

7. Advocacy

Advocacy means to speak up for someone. With the help of an advocate, people with learning disabilities can gain control over their lives, make their own choices about what happens to them and be as independent as possible.

In some circumstances, young people with Dravet syndrome may need more support to get their views and wishes heard. An independent advocate might help access information that the young person needs, or go with them to meetings or interviews in a supportive role. An advocate can write letters on their behalf, or speak for them in situations where they are not or do not feel able to speak for themselves.

The statutory advocacy services relevant to Dravet Syndrome, specifically include the Independent Mental Capacity Act Advocate and the Independent Care Act Advocate. Both are only available if the Dravet individual does not have friends or family to support them. There are also non-statutory services available in some parts of the country. A good summary of this can be found here.