Ready Steady Go’ transition programme

Professionals usually start talking to young people and their parents/carers about their health needs and transition to adult services around the time of their 14th birthday. This allows plenty of time for gradual planned transition. 

Once a clinician identifies a need for transition support, they should write a letter summarising the young person’s diagnosis and health needs, or enter this information into a Health Information Passport or Advance Care Plan if the young person has one. The young person will be given a copy of this information and will have the opportunity to read through it and ask questions. This information should be updated as they progress through their transition. 

Our service standards

Individual specialties, the Trust’s Transition team, adult services, commissioners of both adult and children’s services, and patient representatives will meet at least annually to plan services for young people with long-term conditions as they move into adult services. 

1. All young people with long-term conditions and their families will be aware of their upcoming transition to adult services by their 15th birthday.
2. Consultants caring for young people with long-term conditions will identify markers for complex or difficult transition before the young person’s 15th birthday. They must notify the Transition team if applicable. 

Education, empowerment and development of self-management skills for long-term conditions begins in childhood and is life long. 

Professionals should work with young people, in accordance with their age and ability, to help them develop the knowledge and skills they need to keep healthy and well. This should include the opportunity to talk about how their health needs may impact on their future including employment, independent living, sexuality and relationships. 

The young person should also have the opportunity to be seen without their parents as part of their clinic appointment. 

Our service standards

1. All young people will have the opportunity to be seen without their parents for part of their consultation. 
2. All young people will have access to a developmentally-appropriate generic health education and empowerment programme, developed and delivered in partnership with their local education provider. This will start before their 15th birthday.
3. All young people with long-term conditions will have access to developmentally-appropriate information and advice regarding their condition and its management before their 15th birthday.
4. All young people with long-term conditions will have the option to receive a copy of letters relating to their care, with opportunities for explanation and discussion of the letter and its contents. 

Professionals should work in partnership with young people and their parents to create a personal transition plan. This should be tailored to their health needs and co-ordinated with other aspects of transition as necessary. They should be given a copy of their transition plan, have the opportunity to read it and ask questions.  The transition plan should be reviewed at each appointment.

A number of different transition plan formats are in use at The Lighthouse. These include the generic ‘Ready Steady Go’ resources, which can be accessed via the Trust’s website, and some condition-specific transition plans.

Our service standards

All young people will have access to a hand-held, personalised transition plan by their 15th birthday. 

Every young person should have a circle of support: professionals, friends and family who are there to help them. Clinicians should list the various professionals involved in the young person’s circle of support and identify someone to take over when the young person transitions to adult services. 

Professionals should identify a Transition Keyworker for each young person. If three or more specialties are involved in the young person’s care, a Lead Consultant should be appointed to support the young person and coordinate their transition. 

The GP is often the only continuous professional involved in a person’s child and adult healthcare provision. They play a significant role in the ongoing management of many long-term conditions. 

Our service standards

1. The young person’s GP will be actively involved in their transition, including routine prescriptions, reviews for minor illnesses and planning the young person’s route into urgent care. This will be in place before their 15th birthday. 
2. All young people with long term conditions who are supported by three or more specialist medical services will have a clearly identified Lead Consultant identified before their 15th birthday
3. Young people of transition age (11 to 25 years) with long-term conditions will have access to a named professional key worker to support them through transition. 

Clinicians should ask for the young person’s permission to refer them to the professionals who will be taking over their care in the adult sector. 

Professionals in the adult sector should provide information about the services they offer for the young person and their family. 

Our service standards

1. A detailed summary of the young person’s medical records will be available for each specialist medical service in the adult sector.
2. Each young person with a long-term condition will be referred to adult services before their 18th birthday.
3. Where a young person is supported by three or more specialist medical services, their Lead Consultant will liaise with other consultants involved in their care to plan the referral to adult services. 

Joint reviews of the young person’s transition plan should take place. At least one of these should be led by children’s services and at least one should be led by adult services. 

Joint reviews may take place in transition clinics. If there is not a transition clinic available, professionals from adult services or children’s services (as applicable) should be invited to attend the young person’s regular clinic appointments.

Permission will be sought from the young person to share a full electronic copy of their health records with adult services. The young person will be offered a copy too. 

Our service standards

1. Professionals from adult services will introduce themselves to the young person and their family and explain their role. 
2. Each young person with a long-term condition will have at least one joint review with children’s services leading, and one with adult services leading. 

Young people moving into adult services need to know what to do if they become unwell. The young person should know which hospital they are likely to be taken to should something happen. Professionals should ensure the young person’s GP has the necessary information to support them. 

Young people with learning disabilities may need additional support in order to safely access emergency and inpatient care, such as a hand held Health Passport. When young people are receiving continuing care, parents or carers may continue to provide the young person’s everyday care through the use of the Carer Skills Passport. 

Our service standards

1. Support for young people with complex long-term conditions in inpatient settings will include carers (or parents) in-reaching to support the young person’s everyday care needs where appropriate. 
2. Each young person will have a clear plan for access to urgent (emergency) care including a self-management plan and the role of their GP. 
3. Young people will have the opportunity to visit A&E and inpatient facilities before moving to adult services. 

Eventually, the young person will be ready to attend the adult clinic or be admitted to an adult hospital ward. 

With appropriate transition support, young people should feel confident and ready to make this decision when they are 16 or 17. This means that children’s services can provide support to adult services until the young person is properly settled in. 

Our service standards

1. The young person themselves, adult and children’s services will decide and clearly communicate the date after which the young person’s outpatient reviews will take place in the adult sector.
2. The young person themselves, adult and children’s services will decide and clearly communicate the date after which the young person will be admitted to adult services if they require inpatient care.

Further joint reviews should take place once the young person has started accessing adult services. At least one of these should be led by children’s services and at least one should be led by adult services. 

Joint reviews may take place in transition clinics. If there is not a transition clinic available, professionals from adult services or children’s services (as applicable) should be invited to attend the young person’s regular clinic appointments.

Permission will be sought from the young person to share a full electronic copy of their health records with adult services. The young person will be offered a copy too. 

Our service standards

1. Attendance at adult clinics for transition patients will be actively monitored and services will follow up on non-attendance.
2. Each young person with a long-term condition will have at least one joint review with children’s services leading, and one with adult services leading. 
3. Professionals from adult services will introduce themselves to the young person and their family and explain their role. 

Finally, usually before their 19th birthday, the young person should feel confident and well supported in adult services. If this is the case, they can be discharged from children’s services. 

Our service standards

1. Young people completing transition will have the opportunity to feed back on their experience. 
2. All young people will be in adult services by their 18th birthday.

‘Ready Steady Go’ may be suitable for you and your child if your child is aged 11 or over and has a long-term health condition such as diabetes, epilepsy, cystic fibrosis, cerebral palsy, a neurodisability, a severe cognitive disability, attention deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD).

‘Ready Steady Go’ is a programme designed to help young people develop the knowledge and skills to manage their health condition as they move into adulthood.

Allowing young people greater control over their own condition improves their health outcomes in the long-term and improves their wellbeing. It will help young people gain the confidence and skills to move to adult services.

Watch this video on YouTube for more information: https://youtu.be/UoLnJ6GGKX4

Watch this YouTube video for more information: https://youtu.be/TJ26zzeweI8

Ask your child’s health team about developing a ‘Ready Steady Go’ Transition Plan for the young person. They will be able to help you complete this.

The transition process should start at around age of 11 to 13 years but will depend on individual circumstances.

The majority of children move from children’s to adult’s services when they are aged between 16 and 18.

Often young people will also be experiencing other transitions at a similar time, such as moving from secondary school to college, to university or starting work.

Watch this YouTube video for more information: https://youtu.be/VnYGWKtsYYQ

Usually, clinical nurse specialists or consultants organise a young person’s transition, although other members of staff may be involved. You can discuss any queries or concerns with a member of your health care team. Ask at your next health appointment: “what is your plan for my transition?”

Watch this YouTube video for more information: https://youtu.be/2FWDwdl0_bQ

Watch this YouTube video for more information: https://youtu.be/eqEv375QdS8

Watch this YouTube video for more information: https://youtu.be/YqxRBb8Igzs

We know that approaching a move to adult care can be a scary time in a young person’s life. As they get older, they will start to take more responsibility for things like medicines and treatments, just as they take on more responsibility in other areas of life.

Transition can be a difficult time for parents and carers too.

It can take time for you to get used to handing over some of the responsibility but we continue to value the role that families have in the health of young people.

Families will often be able to give young people tips on how to organise appointments, find out information, remember medicines and treatments and advice on what questions to ask during admission, ward rounds and clinics. Families can also support young people in developing independence and becoming more involved in their healthcare.

There might be some aspects of growing up with a medical condition or disability that have not been discussed with you and your young person. It might be that diagnosis was many years ago and information has changed.

You could have questions about how your young person’s condition might affect his or her adult life in relation to things like career choices, benefits, relationships or family planning.

It is a good idea for you to discuss these things with the healthcare team, who will be able to advise you or put you in contact with appropriate organisations that can help.

Support groups and charities can sometimes offer valuable support to young people and their families who are going through the transition process.

Watch this video on YouTube for more information: https://youtu.be/acE9ANWH_CQ

Watch this YouTube video for more information: https://youtu.be/SfoaCN_97k0

Watch this video on YouTube for more information: https://youtu.be/UmGfVJvBzms

Here’s what will happen:

A plan: You’ll have a written ‘transition plan’. This plan outlines the timing of key phases of the transition process, learning about your condition, managing your condition, the expected time for the eventual transfer and details of any concerns, queries or requirements that you and your family have.

At the Lighthouse Child Development Centre we use the ‘Ready Steady Go’ transition plan which is available on this page. 

Joint appointments: You should receive information about the adult service. In many specialities, joint appointments between your paediatrician and your new doctor are arranged. That means you’ll get to meet your new team before you leave children’s services.

Independence: You will be given a lot more independence. This means that you will need to learn about your condition so that you can be more involved in your care and make decisions for yourself. You will need to be able to give information about your condition and know how to keep yourself well. Although this can be scary, it is also good to have more control over your health and the care you are given.

Decision making: When you are asked to make decisions about your health, you will be given all the information you need to make the right choice. You can always ask questions and let staff know if you are not sure about anything. They will make sure that you understand everything that might be involved.

Focusing on you: At the adult service, during appointments or admissions, doctors, nurses and other staff will spend more time talking to you than to your parents. You will still be allowed to take your parents with you to clinic appointments but you will be the one to talk about your health.

Watch this video on YouTube for more information: https://youtu.be/jphitEXY7r0