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Transition to Adult Services
Top tips: How parents and carers can help
Encourage as much independence as possible from an early age: if your child is already used to doing some things for themselves – even if it’s just deciding when to use their blue inhaler or noticing when they are running low on medication - then they are already practising the skills they will need in adult life
Encourage their interest in their own health and medical needs. It’s good to give them information about any health conditions they have at the level they can cope with. There are some useful programmes and videos that can get them thinking about how to look after their health. (links?)
Explain how to get help when they need it: young people may need your help to understand how the system works. For example, why you see the GP for some things, a hospital doctor for others – and why getting advice from a pharmacist or 111 is sometimes the best option.
Help them prepare for health appointments: before you go, think through together what the health practitioner might ask – and what your young person may want to ask or say. A trip to the department before the day of the appointment might be useful. This can reduce any anxieties.
Think about what reasonable adjustments might help: Reasonable adjustments can make it easier for young people with a disability to access healthcare services. What reasonable adjustments might help your young person? It’s worth giving this some thought. Click on the link to explore some of these: (NHS Reasonable Adjustments)
Let them know about the changes when they get to 16: It’s helpful to explain that health practitioners will start to treat them more like an adult so they are not taken by surprise – but to reassure them that you will still be there to support them.
Take more of a back seat as their confidence grows: over time, encourage your young person to participate more in their appointments. If the health practitioner asks you something that your young person could answer, direct the question back to them e.g. ‘Sam – do you think things are any better?’
As they approach 16 years, ask if they would like you to come in with them. Just by asking, you will help them understand that it’s fine for them to do it on their own if they want. Sometimes, going in just for the second part of the appointment is a good ‘halfway house’
Frequently Asked Questions
What are ‘reasonable adjustments’?
If your young person has a disability, they are entitled in law to reasonable adjustments. People are considered to have a disability if they have a ‘physical, mental or intellectual impairment’ that has a ‘substantial and long-term negative effect’ on their ability to do normal daily activities.
The NHS has a duty to make it as easy for disabled people to use health services as it is for people who are not disabled - so you can request simple changes that will help your young person to access the healthcare they need.
‘Reasonable adjustments’ are practical, affordable, individualised adaptations that are agreed with the clinical team.
Here are the kind of reasonable adjustments you could discuss with health practitioners:
Timings
- A longer appointment or a double appointment. It’s taken time to build a trusting relationship and overcome any communication barriers.
- A shorter appointment or 2 attendances. Long appointments can be too exhausting!
- An appointment at the start or end of a clinic when it may be quieter and quicker.
- An appointment at a time that minimises disruption to the normal routine, if routine is very important to the person.
Surroundings
- A less busy room/ environment where they could wait to be seen
- Somewhere not so bright or noisy where they can be seen if the young person has sensory sensitivities. If this isn’t possible, then sunglasses or noise cancelling headphones might be useful.
- The possibility of a telephone or video appointment to replace a face to face appointment (if a physical examination isn’t needed)
- A home visit or appointment in a community clinic (rather than hospital) may be possible, depending on what the appointment is for.
Approach of staff
- Staff knowing what helps reduce a young person’s anxiety
- Taking time to welcome the young person and settle them in
- Making sure the session doesn’t feel rushed
- Seeing the same staff member each time if possible (although it’s best to work towards being able to see different people)
Communication
- Different forms of communication such as Easy read, pictures, large font, or British Sign Language to be available, text messaging
- Information to be given in short sentences with 1 or 2 points given at a time – using simpler words.
- More time for the person to understand and think during the appointment
- More time for the person to communicate their views – no need to rush
- Use of a communication aid – like a symbol book or iPad
- Accessible information to take away and think about
Extra help
- A family member or carer to help with organising and preparing for appointments – and following up on things afterwards (like getting medication)
- A family member or carer to be with them in the appointment or to stay with them in hospital
- The opportunity to talk to family members / carers before making a decision (unless it’s an emergency)
- A health passport to make sure that health practitioners have all the right information
- A pre-visit to get familiar with new surroundings or find out what the procedure or appointment will involve
In finding the right solution, it’s important that the young person’s clinical needs, their views on what would be helpful as well as what’s practically possible for the service are all considered together.
As you know your young person better than anyone else, you are perfectly placed to help practitioners working with your young person to understand what reasonable adjustments will help them.
There is a national plan for the reasonable adjustments a person needs to be flagged in their electronic health record (as long as they give their consent for this). In the future, this will mean that all the health practitioners they have contact with should have the right information about their needs.
What happens when a young person is too anxious to talk to health practitioners?
When this happens, it can put health practitioners, parents and carers in a difficult position. It also runs the risk that the voice of the young person won’t be heard.
Reasonable adjustments should be put in place in this situation. As a parent or carer, you can talk to the practitioner to explain the issue and come to an agreement together about the best way to proceed.
Would a health passport be helpful?
A health passport is a good way of collecting information together in one place. You and your young person ‘own’ it and keep it up to date, with support from the health practitioners who are involved.
How will I know what appointments my young person has, once they turn 16?
When young people turn 16, normally any communication about their health will go straight to them. This can be a worry for parents and carers who have been the main point of contact up until that point.
In the run up to them turning 16, try to involve them in the process of making and keeping appointments, getting repeat prescriptions etc if they are able. For example, could they put a reminder onto their own phone? Once they reach 16, ask the young person if they would like you to have a copy so you can remind them to go and provide support where needed. Remember, though, that as a young adult they may not want to share everything with you.
If they are not able to take on this responsibility, or they are just not ready yet, you can agree with them that all letters and texts will still go to you. This can be marked on their electronic health record – you just need to request this through your GP and/or hospital services. If it will be meaningful to them, it is a good idea to show them the letters and texts that are coming through.
How can young people communicate their views when they are not able to verbally communicate?
Every young person has the right to have their views and preferences taken into consideration, even if they are not in a position to take decisions for themselves or are non-verbal (or both).
As a parent or carer, you are the person who knows them better than anyone – so you are in the perfect position to advocate on their behalf. Ways that you can do this are:
- Help to make them ‘front and centre’ at each appointment – by including them in whatever is being discussed in any way that is appropriate for them
- If your young person uses a communication aid, make sure that they bring this to their appointment and encourage its use in the session. Work with school staff or the speech and language therapist to make sure your young person has the right vocabulary included.
For further information about consent, decision making and advocacy
Mental Capacity Act Resource Pack
and our page on Mental Capacity
Will my young person have to pay for prescriptions when they turn 16?
Prescriptions are free up until the age of 16 years for everyone. After this, they continue to be free for young people still in fulltime education (to a maximum age of 18 years).
16 to 18 year olds who are not in fulltime education anymore can apply for help with prescription charges. Decisions on eligibility are made according to set criteria.
Further Resources
