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Other provision

The majority of young people with EDS/HSD can access mainstream education if suitable adjustments are in place (link to the EDS UK toolkit on reasonable adjustments).

However, if this isn’t the case, there are a variety of alternate provisions they may instead access. This could be in combination with mainstream school, or replace it completely, depending on their individual circumstances.

Young people up to the age of eighteen are required by law to be in some form of education. Being in education can take a toll on the average student due to the workload and the firmness of timetables. This can be even harder to navigate if you are also having to deal with health issues. There are often adjustments that can be made to help people with extra needs be able to attend education and complete their work, although not everyone will get these. However, even if someone has received adjustments they may still struggle with school, as there is only a limited number of ways that most education settings are able to help. Sometimes it just isn’t enough, and the best option may be to leave education or at least in a formal setting. On the other hand, some people may not be able to cope with school, finding that it affects their health too much or leads to deterioration. In these situations, staying at school can be damaging to someone’s physical health and they may have no choice but to leave. This is often after being absent for long periods.

Different types of alternative provision

For many people who leave formal education, it is often not the work that is the issue, but rather the environment or access to education and so they would still be able to continue some form of education from home. It is common for people to get tutors to help them with pieces of work they may need extra support with. These tutoring sessions can either be online or in person with some tutors even being able to come to your house. This can be especially useful if you’re school has not been cooperative as it allows you to still receive some education without having to go directly through them.

There are many schools that are able to cooperate with young people with health issues. During the Covid-19 Pandemic, live online lessons became common place across the country, making remote learning possible. Many schools are able to use the same idea when it comes to people having to learn from home due to health issues. For example, if access around school is the issue, you would still be able to complete your full (or half) day by joining lessons virtually. It is important to note, however, that schools and places of education are not obligated to do this and can refuse.

Access to tutors and live lessons can be incredibly difficult to receive, so, many young people may find themselves in a situation where they have to teach themselves content, either with minimal or no input from educators. Whilst some may choose to do this by choice, others are forced into it if they want to have a chance of being able to complete their education and exams.

Emily says

  • Online school is typically via a dedicated virtual school or self-taught using online resources.
  • This can be funded privately or your school/local council, usually via an EHCP (link to EHCP section). It can be expensive if funded privately, and you need to find an exam Centre locally if sitting formal exams such as GCSEs or A-levels.
  • This option may be ideal for young people who aren’t well enough to attend mainstream school regularly.

For some people, they may have been able to stay in education if they had had adjustments in place that could have made it easier. Unfortunately, not everyone will receive adjustments and so many have to leave education as it is not accessible to them. The accessibility of education can often be a bigger challenge than health in relation to it, creating greater frustration.

For this reason, some people are able to work despite having left education due to ill health. In some circumstances, employers may be able to make a work environment more accessible than a school may have been. The fact that many jobs do not require you to keep working after your shift also means that it is usually less time-consuming than school.

Many employers now also offer work-from-home opportunities which can be better suited to those with health conditions.

Some people may have even started their own small businesses despite leaving school as this can give them the flexibility they need that education may not have been able to provide, for example flexible timetables.

Whilst some people are able to maintain being in education or work in some format, this is not always possible. For example, someone’s health may not be strong enough to be able to keep up with the timetables or responsibilities that come with education. For many who are not engaging in education, employment or training (NEETs), being unable to take part in these aspects of life is not by choice, but rather is a necessity in order to stop their conditions from further deteriorating. Typically, a support worker will be involved to help with engagement and outreach to help maintain a quality of life for these people, however, many young people slip through the radar (especially if they are nearing eighteen) and so receive no support with this large aspect of their life.

The estimated amount of young people, aged sixteen to twenty-four, who are NEET is 785,000 (2023).

  • Hospital school is for hospital inpatients with long term/chronic conditions, or those who are in hospital for a longer period (the specific amount of time depends on the individual hospital/area- please see https://www.gov.uk/government/publications/hospital-education-a-guide-for-health-services/hospital-education-a-guide-for-health-services for more information)
  • Hospital school covers children and young people from reception to year eleven, unless they have an EHCP (link to EHCP section), where education may be provided for a wider range.
  • It is usually 1-1 with specialist subject teachers and takes place on weekdays during term time.
  • If a young person usually attends school, their normal school can send them work to cover in lessons, so they don’t miss work whilst in hospital.

  • Non-mainstream schools typically cater towards students with learning disabilities and/or significant physical disabilities which mean they cannot access mainstream school.
  • They may cover less academic work and often instead focus on life skills such as promoting independence.
  • A non-mainstream school place is almost always covered through an EHCP (link to EHCP section).

'In January 2023, I had to officially drop out and wave goodbye to my favourite place. I cried, a lot, about the fact that I had had to leave school because of my health, and found myself grieving it. Leaving school was not my choice, it was my specialist team’s. I wanted to continue despite the impact to my health so that I would have qualifications, but my doctors were adamant that this was something that I had to do.'

Tynara

How to go about leaving education

Leaving education is not a decision that should be made hastily or in the heat of the moment. This is a big decision that is generally life-changing or altering and so should be carefully considered.

Sometimes, if doctors are concerned about your health, then they may mention that leaving education may be best, although this is again, not taken lightly. However, if nothing has been mentioned but you still feel that you may benefit from leaving education, it is important to start that conversation. It is often easiest to start by talking to loved ones about it, if you are comfortable doing so. This way, they may be able to then help with approaching the topic with doctors.

Once it has been spoken through and agreed upon, it is important to contact your place of education and request a meeting. Leaving education before eighteen is not typically allowed unless you have a valid reason, like a debilitating health condition. It is usually helpful to have some input from medical professionals for this reason, as it will act as evidence that leaving education is something you have to do. This could look like having a medical professional attend the meeting or writing a letter to the appropriate staff members.

What happens next will depend on your school. Some are often happy to have you leave and will help with this process, however other’s may not accept your request and so the process can take longer as you will need to keep having discussions and meetings.

If your school is on board with you leaving education, then they should contact your local council to inform them of this, and the reason you had to leave. This should then open up support options. Anyone leaving education before eighteen should receive a support worker who will be able to help with the transition. Unfortunately, this does not always happen.

Prospects For The Future

For many people, leaving formal education can be or feel life-altering. It often raises questions about what the future may look like, especially if you were not able to complete exams. It can often feel hopeless, but that doesn’t mean that it always will feel like that.

If you were unable to complete exams, there are some jobs that do not require qualifications to be able to be employed, if you decide that further completion of education is not for you. Positions like retail work do not always require GCSE’s, for example. It is also possible to begin working for charities without qualifications, although this will depend on where you apply. Most businesses that do not require qualifications will often have you complete training or a course with them that will teach you how to do the job effectively.

Jobs that don’t require A-Levels can include, but are not limited to, things like computer analysis and being a chef. These jobs will depend on what GCSE’s you were able to get and at what grades, but there are typically more jobs open to you if you have passed maths and English at GCSE level, and so having A-Levels or equivalent qualifications are not always necessary.

Most jobs are also required to provide reasonable adaptions, if you need them, to help make the process and work smoother in relation to any health needs you may have. Your local job centre should be able to help you find a job that suits your abilities and any adjustments you may need.

However, some people may want to pursue education again when they are well enough. If you were unable to achieve GCSE’s (and sometimes A-Levels) you may be required to complete a functional skills course along with your chosen subject. These will often be offered at your local college and so it is important to check which qualifications and courses are required for you to complete the course of your choice, working towards the career you want. If you have the appropriate qualifications from when you were at school, then you may not need to take any additional courses and still be able to join the course you wish. For whatever course you are interested in, it is still important to check what is required for it.

If full-time education might still be difficult, then most colleges offer part-time courses where you have more time in-between classes. This also means that the course is completed over a longer period and so you will not receive your qualification as quickly compared to the full-time equivalent course, although this can still be a valuable and structured way for some people to achieve their qualification.

If you have the necessary qualifications or courses, then some people may even look into going to university. Again, they usually offer both part-time and full-time course options, so it is important to check with your chosen university about what they can offer and what might be best for you.

For many people, education can be difficult as the system is not typically set up for those with health issues, however many settings are better set up, like universities, or are changing the way they do things. Thankfully, most places of education are required to allow reasonable adaptions to help make your education smoother, although these will vary. To set these up, or find out what is possible, it is important to contact your chosen place of education.

Some of our young people talk about the downside of having to leave education

  1. 1. For many, leaving education means that they end up with no qualifications or ones that need more added to them in order to have a meaningful impact. Having to look to the future can be scary when you have no or few qualifications as even when looking for jobs, they tell you what qualifications you need. For many, the thought of going back into education can be scary and maybe not even something they want to pursue again due to bad experiences. There are options for re-entering education at later ages but not everyone may want to do so. For those, the jobs available that do not require qualifications typically are not very well-paid, and so it can be difficult. Just like mental health, those who are NEET are more likely to have problems with employment, even up to twenty years later, when compared to non-NEET peers.
  2. 2. Whether they are platonic or romantic, maintaining relationships when you are not in education can be incredibly difficult. As highlighted in the ‘Loneliness’ section, most of your peers are still in education or working and so keeping regular contact usually has to fit around their schedule. When you are unable to see or speak to someone frequently, it can be difficult to maintain relationships, so if they are people you want to keep in your life, it is important that you both try to find a way to keep up communication. This could be having scheduled phone calls, becoming pen pals and sending each other letters or meeting up at the weekends, to name a few ways! Another issue that can affect relationships is the differences that become more apparent when one of you has had to leave education. If you have left education, it can be hard to have to watch or hear about your friends still going as it is something you are no longer able to do, through no fault of your own. It can be bittersweet to listen to friends talk about school and the progress they are making, like if they are applying for university or sitting exams, especially if you feel like you have no stories to tell them about your life. The only way through this is to communicate but that can be daunting.
  3. 3. Loneliness is a large aspect of life when you are not able to be in education, especially if you are house or bedbound. When you leave education, all of your friends will most likely still be at school or college, some may even be working. This can lead to days where you may not have contact with anybody outside of your household as your peer’s lives still continue as normal, adhering to strict schedules and timetables. This can often mean that even if you message them, they may not be able to respond until the end of their day, meaning it is incredibly hard to converse during the day. Unfortunately, for many people, they find that their healthy peers almost forget about them as they are no longer in their presence all day, every day at school like others are. This can lead to them forgetting you’re not there or simply becoming used to it and so they can stop checking in or messaging you. This can be really difficult to deal and live with, as for many people most or all contact with friends ceases as soon as they are no longer in education. It can also be very difficult to meet new people, as most people of a similar age will most likely still be in education or school and so there is often nobody to meet or see during weekdays. The majority of activities and clubs are unfortunately at schools and so you would be unable to join them yourself to see friends or meet new people because you no longer attend school. For many people, the only way to help mitigate some loneliness is through social media, with many people immersing themselves in online communities surrounded by people in similar situations. This also means that you may now have people who are able to chat during weekdays.
  4. 4. For the majority of people who have had to leave education, especially NEET’s, boredom becomes a large factor in life as when you are in education, it fills your day and you have work to do even when you come home. However, when that is taken away, it can be difficult to find ways to pass the time. In some cases, the severity of the boredom can even lead to mental health issues. When finding activities to conquer boredom, it is important to ensure that they will not act as a detriment to your health! Some examples of activities people do to help combat boredom (but don’t require too much energy) include: crocheting, reading, watching movies, building Legos, doing puzzles, drawing and taking part in the Warrior Card Swap (https://www.warriorcardswap.com/). Depending on your interests, there will most likely be at least one activity that you are able to do that doesn’t require too much energy or effort, it can just sometimes take a little while to think of them.
  5. 5. Grieving school is a big part of many people’s experiences upon having to leave school, even if they didn’t particularly enjoy school at the time! For those with chronic conditions, school is one of many things that they have lost due to their health. Many people don’t realise just how pivotal education environments are to life and often take going for granted. Leaving school often brings with it the grief of losing the opportunities school gives, both in the present and the future in the form of qualifications. Without school, people often lose friends, socialisation, education and so much more. It is a big part of life that can almost leave a hole when it is taken away. It is a big loss, and if it is not addressed, could affect someone for the rest of their lives. Unfortunately, while many people will have had to grieve, for example a loved one passing, not many people understand the concept of grieving parts of your own life. The emotions can be overwhelming as you have to adjust to a new way of life which most people would never have thought they’d have to do. Psychologists and therapists can be great to help with these complicated feelings, so it is important to remember that you are not alone in these feelings or situations. (Link to free therapy)