Introduction
The ages of 11 to 25 years are full of new experiences, changes and challenges, but there are also practical issues around making day-to-day matters and special occasions (such as exams or travel) easier or safer.
The young people, carers, parents and professionals we have worked with have suggested some of those practical issues that they’d like help with. This toolbox should help you with some of the practical issues you may face.
The information is also valuable to parents and carers, healthcare teams, educators and managers.
What we'll be covering
We will be looking at some of the practical issues that affect your:
We will also:
Health
The NHS in England is a large and complex organisation. Most Young People will engage with it through either their General Practitioner (GP) or their clinical team.
How does the NHS in England work and how is it changing?
There are a variety of practical issues that are particularly important during the years of healthcare transition.
Finding a GP
Most young people will eventually move out of the family home and with a change of location will need to register with a GP close to where they now live. For students, this may be a GP who covers the university, otherwise, it will need to be a GP practice in the area. During holidays if you travel back to your family home you can register as a temporary resident at your previous GP practice.
The NHS website gives a lot of useful information about how to get appointments, what type of consultations are available and how to make sure the GP can help you in the best way.
What if I have a health crisis?
If you think that you need medical immediately, use NHS 111 online or call 111. They can direct you to the best place to get help if you cannot contact your GP during the day, or when your GP is closed (out-of-hours). It’s a good idea to read and understand the NHS guidelines on when to use NHS 111 online or call 111.
As well as discussing the move to university life with your clinical team, there will be other preparations to make and processes to follow. Here are some suggestions that will help you.
Studying at University can be emotionally and intellectually demanding, and it’s important to know how to look after your mental health as a student.
Prescriptions
Prescriptions are issued by your GP or a prescribing member of your clinical team. They may be for medication or devices. Some medications are not prescribed by your GP and must be prescribed by a specialist team at the hospital.
Repeat prescriptions
If you regularly receive the same items, this should be available as a repeat prescription which means you must request another prescription monthly but do not need to see a doctor each time.
If you think one of your medications should be on repeat prescription but isn’t, please speak to your GP. Some medications require you to have certain tests before your doctor can prescribe them (such as thyroid medications).
Your GP may wish to speak to you, probably every six months or so, to update any repeat prescriptions, this is called a ‘medication review’.
The process for requesting prescriptions can vary between GP practices, and most will have a mobile phone app or website where this can be done easily and in your own time. Please speak to your GP reception about registering for this service. Prescriptions can also be sent electronically to your preferred chemist or pharmacy and you can opt to receive a text message when it’s ready to collect. From the age of 16, you can do this independently. This can also be done online via your personal NHS Account.
Prescription charges
Normally there is a charge for each item on a prescription. At the time of writing, the prescription charge is £9.35 per item. So, if there are two medications on a prescription, it will cost you £18.70, three items will cost £28.05, and so on. If you need a monthly prescription for three or four items, then the costs will add up quickly. Fortunately, there are several ways that your bills could be reduced.
Education and age exemptions
Prescriptions are free whilst a young person is in fulltime education.
Medical exemptions
Free prescriptions are available for certain conditions, such as Type 1 Diabetes, Epilepsy, Thyroid problems and some others. The NHS Business Services Authority website provides an eligibility checker to help decide if a you are exempt. If you are exempt, you still need to apply for an exemption certificate, which needs to be signed by your GP. These certificates must be renewed when they expire – otherwise you could be fined.
Prescription Prepayment Certificates (PPC)
These may help you if you are not exempt from prescription charges. Prescription Prepayment Certificates reduce the cost if you have to pay for multiple NHS prescriptions regularly. For example, at the time of writing, a 12 month prepayment certificate costs £108.10 and so will save you money if you need more than 11 prescribed items (each costing £9.35) in a year. Like Exemption Certificates, these must be renewed when they expire – otherwise you could be fined.
The NHS Low Income Scheme (LIS)
The LIS can help with the costs under certain circumstances, if you are not already in receipt of some benefits. The NHS website explains in detail what is available and how to apply.
Fertility and starting your own family
Growing up with a long-term condition may make you think about having your own children and family, even if in the distant future.
Some conditions may be inherited, some medications can affect fertility or there may be an associated risk to the baby or mother. When you look for reliable information online, the NHS website is a good place to start, as are the patient support charity websites.
This is something you can and should discuss with your clinical team at the hospital or with your GP. If you are worried about something or not sure about what the information means, make a note of your questions and then contact your GP or clinical team.
Patient support organisations
There are patient support organisations for pretty much any existing long-term condition. The Patients Association is for all patients, others are specific to certain conditions, such as Diabetes UK, Allergy UK, the Epilepsy Society and Asthma and Lung UK. There are many others, with a wealth of useful information specifically for you and your condition and support groups or helplines for questions you want to ask.
Language and jargon
Whether you’re a young person, a parent or a professional you’ll have realised that there’s a lot of jargon in the health and social care systems. This jargon buster from Think Local Act Personal may help. Just type in a term…
The NHS, like many other organisations uses abbreviations to describe some things, and acronyms for others. There are useful resources to help you understand the abbreviations you may find in your health records and bust acronyms that you’ll find in documentation, leaflets and letters you get from the NHS.
Education
Education is a major part of the lives of Young People going through healthcare transition from the ages of 11 to 25, and adaptation and support are crucial.
Exams and attendance
Children and young people with medical conditions may miss a lot of school with appointments, being ill, etc. and this could lead to lower grades and different choices when deciding on future career or education options.
Many long-term conditions can affect concentration because of not feeling quite well, being in pain, or very itchy, very tired or more stressed and anxious.
Schools, colleges and universities should be supportive and absences to attend hospital appointments should be marked as authorised and should not count against you.
It is the role of the Educational Psychologist working with a school to assess a student needing adjustments and prepare a statement of medical and educational need – an Education, Health and Care plan (also known as an EHCP). Especially for more common conditions, many patient support groups and charities, like Epilepsy Action, Asthma UK and Diabetes UK have help and advice available.
During exams special conditions and exemptions may be offered depending on the medical condition.
Reasonable adjustments may also be provided to change the environment that an exam is sat and the timings.
You can apply for adjustments to Access Arrangements for activities and exercise so that you feel included, rather than always having to ‘sit it out’, and many of these applications are successful.
University life
Support may be needed to get the right accommodation, like a private bathroom if you have gut or skin conditions needing more time and quick access, or an accessible, adapted bathroom if you have a physical disability. If you have medications which need to be refrigerated there may be grants are available to ensure you have a private fridge. Check out the Disabled Students’ Allowance, and try disease-specific charities.
Just as at school, you may need access arrangements and adjustments to help with your studies and exams.
Applications
Make the university aware of your requirements for reasonable adjustments when you apply. This includes your Universities and Colleges Admissions Service (UCAS) application, grant applications and any other forms you complete.
Check out the website of the universities you consider. Ask for information if it is not obvious.
You need to be clear what you need, such as disability accommodation, special software etc.
Your health team can support you with a detailed letter regarding your needs and you can ask your school to provide the details of support that was available to you when you studied there.
Once you are there
All universities have a student welfare department that you can contact to discuss any specific requirements or help, that you feel that you need.
The patient support charity for your condition may also have advice on what you can do to manage your condition at university, like that provided by Anaphylaxis UK for those who live with serious allergies.
Work
Choosing a path to your future career and choice of work is a big step, and the workplace poses particular challenges for Young People.
Careers
More than 15 million people in the UK live with a long-term condition and many have active and fulfilling careers. A long-term condition may influence your career choice as some careers may not be possible, or sensible.
For example, someone who has epilepsy whose seizures are not controlled may not be able to operate heavy good vehicles or drive public transport or someone with allergies to animals may not be able to work as a veterinary nurse.
It important that this is discussed with someone who knows (maybe your specialist nurse or career advisors) before you decide on alternative options. Sometimes adaptions are possible, and there is guidance available for you.
Starting to talk to teachers and careers advisors early about types of career and training can be helpful to understand the options that are available.
There are organisations who can also help if it is difficult to think of a career due to your life circumstances. These include the Princes’ Trust, which offers advice and runs programmes for young people and other charities, like My Big Career who provide support for young people.
Apprenticeship schemes and other options
A-levels and university are not the only route into work. Many people have different skill sets and interests, which mean apprenticeships may suit them much better. The government has apprenticeship schemes, many of which will take young people to foundation level skills and beyond.
In the workplace
A long-term condition may be recognised as a disability and therefore covered by the Equality Act. This says that you should not be discriminated by any employer (or in an education setting) because of your health conditions, and reasonable adjustments should be made.
The government’s Access to Work scheme can help you get or stay in work if you have a physical or mental health condition or disability. The website gives information on whether you are eligible and how to apply.
Many employers will have an occupational health department. If you have, or develop a health condition, then you should be referred to the occupational health team for an assessment. It is their role to keep people safe and well at work – physically and mentally. The role of occupation health and your rights are explained here by the Advisory, Conciliation and Arbitration Service (ACAS).
Money
You may be entitled to means-tested and/or non-means-tested benefits such as the Personal Independence Payment (PIP). The Citizens Advice Bureau (CAB) is a great organisation to discuss your benefit entitlements with and can support you in accessing and applying for them.
If you have social care support or a social worker, they will be also able to help you with benefits applications.
Many of the patient support charities such as Diabetes UK and Kidney Care UK also offer advice on money and benefits, so it pays to look at the support websites for your condition.
Travel
Travel is an important practical aspect of life for Young People, whether it’s day-to-day travel or special stuff like holidays or trips to see family abroad.
Just getting around
Travelling from A to B, from home to hospital or the workplace often costs money and can be difficult for some people.
You may be eligible for free or reduced travel, such as bus passes or railcards.
Details on support to help with the cost of transport in the UK can be found on the government website. This includes specific support for young people, disabled persons, or if you are currently not in employment.
Further information is available on driving with medical conditions, Blue Badges and public transport for disabled persons.
Holidays
Travelling with a long-term condition is very much possible, but planning and preparation are even more important than usual. Some additions to your planning and packing checklists may be required.
Travel insurance
This is essential, and your medical conditions must be disclosed to the provider when you apply. You may also have to tell them about your medications and hospital admissions. It helps to shop around, and some companies specialise in certain medical conditions.
There are health insurance comparison websites which you can compare companies willing offer insurance for people with pre-existing medical conditions. It’s really important to check the ‘small print’ as the cheapest may not cover all expenses.
Since the UK left the EU, the EHIC card is no longer valid. If you are travelling in Europe, it is useful to apply for a UK Global Health Insurance Card (GHIC card). The GHIC card is not an alternative to proper travel insurance, which you should also have.
Packing your medication
When travelling keep your medications with you and not into your checked luggage (suitcases). Consider the temperature requirements for your medications. Some medications need to be stored at a certain temperature.
Even the best-laid travel plans can suffer from delays, so it’s important to take extra medication or equipment just in case.
You may need a letter from your GP or healthcare provider to confirm that you need certain medications or equipment when going through security gates.
Different countries have different rules about which drugs cannot be taken into them. Check carefully as part of your travel planning.
Languages
Before travelling it may be worth writing down some phrases about your condition in the language of the location you are going to, such as ‘I have diabetes and I need some sugar.’ Some health charities provide these and are available on their websites. Remember that apps like Google Translate are not intended for detailed healthcare communication and may not be accurate enough.
Preparation
Healthcare systems vary greatly from country to country. Research the country you are visiting, and discover how easy it is to access healthcare, where local services are, and how and when you will be expected to pay for them.
Ask your consultant or GP for any letters or information you should carry with you. Packing that information in your hand luggage, a keep a copy securely on your mobile phone or in cloud storage. There is information in the Healthy Information section, which explains more about this.
Medical ‘Travel Passports’ or ‘Patient Passports’ are available for some conditions. You may find it helpful to complete one and carry it with you.
Lived experience
Stories are a powerful way of learning and can help put your learning into context.
Watch or listen to the story below and think about it relates to the material in this module.
Tips for attending University with a disability
Summary
Hopefully, you now have a better idea of how some of the main practicalities work and that you may have significant rights to help and support.
If you want to know more...
There are plenty of ways to find out more. One great one is to use your NHS account to access services online on your computer, tablet or mobile phone.
Find more information on the 11to25hub
Why not dip into one of our other modules, where you can find out about other aspects of healthcare transition in more detail.
Bust the jargon!
Whether you’re a young person, a parent or a professional you’ll have realised that there’s a lot of jargon in the health and social care systems. This jargon buster from Think Local Act Personal may help. Just type in a term…
External resources
Here are some more resources that you may find helpful, engaging and informative:
- Making Integration a Reality: Part 2. Developing Effective Holistic Services for Young People
- Working Together to Safeguard Children A guide to inter-agency working to safeguard and promote the welfare of children