Please note, this new page is a work in progress and is still being updated.

iNForm Your Transition to Adult Services

Transition is the process of moving your care from children’s to adult services. It is an extremely important process as growing up means you will take control of your healthcare needs.

Transition refers to the full process, including initial planning, the actual transfer between children and adult services, and the support that you should receive throughout the whole process.

We considered providing a comprehensive guide to Transition a few years back, but after careful consideration and consultation with various hospital units across the country, we felt that this approach would not be very practical as every regional paediatric department has their own internal guidelines and practices. If we insisted on a UK-wide approach, it would not necessarily be helpful to you, as you need to work closely with your own care providers and how this is handled in your local hospital.

We therefore feel it will be more useful for us to educate you, your families and carers, on what support you should expect to receive, as well as how our team of Nerve Tumours UK Specialist NF Nurses/Advisors can support you and your family throughout your Transition journey.

We obviously have taken into consideration the guidelines set out by NICE, the National Institute for Heath and Care Excellence, for Transition. For those of you wanting to read them, here is a link.
 

What to Expect

Here is a list of some of the topics that your care team should talk to you about and that should be looked into during the Transition process.

Remember, if you have questions at any point, you can call the Nerve Tumours UK Helpline for further information at any time during the Transition process.

Considerations

Not all people are the same. Some of us are good at reading, others are good at sport. After all, the world would be a very boring place if we were all the same and liked the same subjects!

Therefore your Transition should be suited to you and your needs; your healthcare provider must make sure that the support that you receive meets these needs.

They need to take into account:

• Maturity, as age of Transition can vary
• Cognitive and learning abilities
• Mental Health support
• The extent of your NF
• Social and personal circumstances
• Who looks after you
• How you prefer to communicate

Planning

Your healthcare team should start planning for your Transition to adult medical services from school year 9 (when you are aged 13 or 14) at the latest, but for any young people with education, health and care plans, this must happen from school year 9.

Any support must be the right support, so we need to make sure that it is:

• based on the abilities and strengths of the young person
• a useful and workable plan.
• not a pre‑determined plan, as remember, everyone is different!
• clearly showing and identifying the type of help and support that can be provided for you, and that includes the support that Nerve Tumours UK can offer to you, your family or carers. This support is wide-reaching and includes access to our team of regional nurses, the National Helpline and all of our downloadable literature.

If there is any information that you need that is not on hand, we will make sure we go and find out for you.

Parents & Carers

Although it is better for the young person to take charge of their healthcare as they grow up and become more confident, we do realise how unsettling and daunting this can be.

We will always welcome your parents and carers to be part of this process, but will only ever do so if that is what you want, so make sure you tell your healthcare providers if you would like others involved.

Safeguarding

We have to make sure all young people are safe, so all healthcare workers involved in supporting a young person through Transition are responsible for sharing safeguarding information with other organisations, in line with local information sharing and confidentiality policies. We are able to provide ours on request, should this be helpful.
 

Nerve Tumours UK

Young people are the most important voice in this Transition journey, so our regional team of Specialist NF Nurse Advisors, who are all qualified medical professionals, will:

• treat all young people with respect and as an equal partner in the process
• listen to you and take a full account of your views and needs
• involve you and your family or carers
• liaise with your GP, if needed
• support you to make decisions and build your confidence so you can manage your own care and support in the years to come
• fully involve you in terms of what is planned, implemented and reviewed

Our regional team of Specialist NF Nurse/Advisors will cover all necessary topics, such as:

• A full explanation of the your ongoing medical needs
• Emotional requirements
• Relationships
• Contraception & Family Planning
• Education and/or Employment and how we can further help in these topics
• Benefits System

Movement to Adult Services

Our team will liaise with the teams in adults services to ensure a smooth Transition, depending on your needs:

Complex NF1/NF2

You will continue to be looked after within these specialised units, and should not see anything different in your care.
 

Non-Complex NF1

Your local paediatrics units, or our team of Specialist NF Nurses, will liaise directly with your GP, to ensure they are fully briefed of your medical history and to advise the level of care that you require going forwards

On some occasions it may be necessary to prolong the stay under paediatric services and this will be managed locally.
 

Building Confidence and Independence

Our team of Specialist Nurses will help with Transition each step of the way and our support carries on throughout your lifetime, whenever you need us, we will be there to support you.

Always remember that we will take any question that you have seriously. No question is ever too small or too daft!

We want to equip you with the ability and tools to build confidence and independence, so you can take charge of your healthcare.

As well as our regional Specialist Nurse/Advisors, we offer a host of downloadable literature and are linked to many other useful charities that will help you navigate education, employment and the benefits systems.

We also run closed community support groups for you to talk to each other.
 

Nerve Tumours UK Specialist NF Nurse/Advisor Lead Clinics

These clinics are available in some regions to help with ease of Transition for the young person. Ask if these are available in your area, or book an online meeting with the Nerve Tumours UK Helpline team.
 

Easy to Understand

Our Specialist NF Nurse Advisors agree to always speak in a clear simple manner, while all downloadable documents are written in a clear, easy-to-read, concise format.