How Cystic Fibrosis Affects School and Education

U.S. Air Force photo by L.A. Shively

Children spend more than 1,000 hours in school each academic year, which is more than 12,000 hours over their childhood and teenage years – so school is an important part of a child’s life. As well as providing education and teaching new skills, schools provide the opportunity for children to develop socially, and help them to learn independence out of the home setting. It can also help them to develop new areas of skill that can boost their self-esteem and get a sense of belonging from being part of a wider community. Going to school can be particularly important for children with a cystic fibrosis because it is the part of their world that is ‘normal’, where they can just be ‘children’ and take part in activities that all children their age are doing.

In principle, children with a medical condition should have the same rights to a good education as other children, including going on educational trips, taking part in sports and PE. But, in reality, they can experience difficulties with accessing all areas of the curriculum and maintaining continuity at school, academically and socially. Depending on their condition, children may have to miss school due to ill health or medical appointments and this makes it harder for them to keep up with academic work and with their social groups.

In addition, there are some medical conditions that directly involve the brain (such as epilepsy or a brain tumour) which are known to make it more likely that a child will develop either specific or general learning difficulties. There are also some treatments that may affect learning and development (such as radiotherapy for some cancers) and affected children may need additional support with learning in order to achieve their full potential. Support should be provided within the education system, usually within mainstream education but, in some cases, a child’s needs can be better met with more specialist provision.

Unfortunately, parents often report that they are not able to get the help that they feel their child needs in school, and find it challenging to argue for extra support. Many parents find the prospect of talking to teachers quite daunting, let alone headteachers (it can make them feel that they themselves are back in school and about to be told off!). Also, teachers and schools only have access to finite resources so there is a limit to what teachers and schools can provide. There is also lot of variation in how well they are able to provide for each individual child’s needs. Schools are all monitored closely, and teachers often report feeling overwhelmed by all the demands placed on them, and it can be hard for them to have the flexibility in their schedule to allow them to make adaptations to meet individual needs. There is a statutory guidance document about support for children with a medical difficulty in school called Supporting Pupils at School with Medical Conditions, issued in December 2015, and this can be accessed via the website listed in the Resources section at the end of the book. This gives very clear guidance that pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education. This is done by setting up an Individual Healthcare Plan (IHP) in partnership with parents, the school and the child’s support services. The plan should include what additional help the child may need in school, and who is going to provide it.

All schools have a SENCO who is responsible for implementing the school’s policy regarding children with additional needs. Your child’s class teacher will probably be the teacher who knows your child best, but the SENCO will also be the ‘go to’ person to communicate with if you have any concerns about your child’s access to education. They will be able to assess whether they need any additional support in school and they can help draw up an IHP for your child.

The example IHP shown here is for Jake who has a nut allergy and is in primary school, just starting Year 3.

Individual Health Plan – Greenview Primary School   Jake Smith (7 years 8 months) Class: 3W Drawn up by Jake’s mother, Mrs Alison Smith and Miss Wheeler, class teacher Date to review: Within one year
Describe medical needs and give details of child’s symptoms, treatments, and any equipment Jake has a serious, life-threatening allergy to peanuts and cashews. He therefore has to avoid these nuts at all times. Jake develops symptoms within a few minutes of contact with nuts. His symptoms include wheezing, difficulty breathing, feeling lightheaded, swelling of his lips, tongue and face or raised itchy swellings anywhere on his body. He may feel frightened and panicky and should be given reassurance. If Jake shows any signs of difficulty breathing, he must immediately be treated using the EpiPen® provided (see below).
Name of medication, dose, method of administration details EpiPen® auto injector – two are provided. The EpiPen® should be injected into his outer thigh, as instructed on the packaging. If there is no improvement after ten minutes, the second EpiPen® can be given. An ambulance must be called immediately – dial 999. Jake should lie down and, if he feels faint, his feet and legs should be raised.
Arrangements for school visits/trips etc. The EpiPen® needs to be taken whenever Jake is off site, even if he is not expected to eat while on the trip. The EpiPen® should be carried by a member of staff who has received the appropriate training to use it.
Staff training needed/undertaken – who, what, when Jake’s class teacher and at least two other members of staff need to have training in how and when to use the EpiPen®. This training should be given on a yearly basis. Given the school is likely to have other children with an allergy in its care, it is advisable for more than this number to have training. The training will be provided by the local community nursing team. Additional information can be given by Jake’s mother and father.
Details of who to contact Jake’s mother Alison Smith

Jake’s father Harry Smith

The above information is, to the best of my knowledge, accurate at the time of writing and I give consent to school/setting staff administering medicine in accordance with the school/setting policy. I will inform the school/setting immediately, in writing, if there is any change in dosage or frequency of the medication or if the medicine is stopped.

Signature of parent(s)Date

Communication with School

Starting school is a very significant milestone for any child and there are other important transitions, particularly junior to senior school, where you may need to do some preparation to help the school understand what your child needs and explain about their medical condition.

There is a balance between maintaining some privacy for your child and how much information teachers and other children should have. It is usually best to start from a ‘need to know’ basis. The teacher and school do need to know how to manage your child’s condition in order to keep them safe at school, so they do need to know about any monitoring or medication that your child may need when they are in school. It can also be helpful for them to know about any forthcoming procedures that may affect your child, both in terms of managing their absence in school, but also in terms of the impact this may have on the child beforehand or afterwards. This can help them plan the best resources for your child while they are away. For example, when children are in hospital, they should have access to education via hospital school education services and, if they have significant absences from school, they can receive home tutoring. Creative use of the Internet and facilities such as Skype can also help children continue to feel connected to their class and peers during absences.

Other children in the class may need to know something about your child’s condition if it is going to affect them or in order for them to best understand your child and accept them as a peer. For example, if your child has had treatment that has made it more difficult for them to do the things they used to be able to do, this may need to be explained to other children so that they can understand and make allowances. They may need reassurance about the changes and ideas about how to help the child join in activities again. This is sometimes best done just before the child returns to the classroom, so that any strategies are already in place to welcome the child back. If you have had a discussion with your child’s teacher so they know what to expect, he or she can then help the rest of the class prepare for this.

Schools may also benefit from further training or information about supporting a child with particular medical conditions. Many of the charities produce leaflets or guides to help explain a condition to other children; for example, the Children’s Cancer and Leukaemia Group (CCLG) booklet Welcome Back! A Guide for Teachers Helping Children and Young People Returning to School after Cancer, and the National Eczema Society leaflet All about Eczema – An Information Pack for Schools. Links to the websites to access these leaflets are provided in the Resources section of this book. These resources will often provide the sort of information the school needs about the child’s condition but may also suggest some educational activities for children that might help.

Transition into School from Nursery to Mainstream Reception Class

Many parents worry about their children starting in reception class at primary school. It is not just about your child entering ‘big school’ but also a developmental marker in your life as well as your child’s – going to school is a first step into the outside world. Your child might have been to a nursery or pre-school already; if this is attached to the mainstream school then the transition might be slightly easier in that the location, environment and faces are already familiar. If the school is entirely new, then it takes a bit of time for you and your child to get used to the new place and people, so don’t be hard on yourself and expect it to all run smoothly from day one. The key to transitions of any sort is to understand that it is a process of change, not a one-off event.

The transition phase should ideally begin before the actual move. For parents of a child with a long-term health condition, the first step will be to think about which is the best school to manage your child’s medical condition. If there is a particular school that you think meets your child’s needs, medical teams will often help with school applications. However, it is often difficult to make a final decision on a school before your child has begun there, so don’t be too quick to write off a school as it might end up suiting your child very well. Most school teachers are more than happy to meet parents beforehand to talk about meeting needs and any reasonable adjustments that could be made. Some medical teams will also visit the school with you and help to write an Individual Healthcare Plan. Depending on your child’s healthcare needs, you may choose not to disclose the diagnosis to other parents. Remember that the teachers will maintain confidentiality and so will only tell other people if you have agreed to this beforehand. With your child’s class teacher, agree some means of regular communication and updates so you feel you have contact but are not overly intrusive.

Transition to Secondary School

Transition to secondary school can be particularly challenging. A child who has become confident at a small primary school where they are well known and one of the oldest pupils will find that they are one of the youngest in a secondary school and have to re-establish themselves there.

Secondary schools are very aware of how important a smooth transition from primary to secondary school is, and they usually arrange visits and activities for children in their last term of primary school to ease this process. They may invite children to the new school for an introductory morning or day, and familiarise them with the key people they may meet as well as the expectations the school will have. For example, the most common fear that children express about their move to secondary school is that they will get lost and not be able to find their way. Many schools manage this by gradually introducing children to the new site, and also by giving them strategies to manage this fear by talking to them about how they can ask for help or where they can get help with this. In fact, hardly any children do get lost and, if they do, they learn how to find their way, which is a useful skill in itself. For children with a medical condition and any other child who has had contact with the school SENCO, the SENCO from the primary school will usually arrange a handover to the new SENCO to make sure that key information is successfully communicated.

Case Study – Salim (11 years old)

Salim is about to move to secondary school. Some, but not all, of his friends from primary school are going to the same school. Salim has diabetes and needs to monitor his blood sugar and have insulin injections during the school day. He also has some restrictions on the food and drink he can have at school.

At his primary school, most of Salim’s friends knew of his medical condition and had got used to it. He had teachers who would look after him, make sure his treatments were done and phone his mum if he was unwell.

Salim’s mother is worried that Salim will forget his treatment routine and be tempted to eat or drink food from the other children because he won’t want to tell them he has diabetes. She is also worried that the teachers are too busy, and the school is too big to take good care of him. Salim’s biggest worry is that he will get lost.

Salim’s mother was very pleased that the school told her about the Individual Healthcare Plan and allowed the Clinical Nurse Specialist for his diabetes team to go to school with her to write and agree the plan. Mum started to allow Salim to help out more with his treatments at home rather than doing it all for him, so she could be reassured that he did know what needed to be done and when. Salim was pleased that some of his old friends were going to the school with him as that made him feel like he had some allies.

After the end of the first term, when Salim was asked about how he had settled into school, he could not remember ever being nervous. He had made lots of new friends and had told some of them about his diabetes. Although not all the teachers knew about his diabetes, his form tutor and the SENCO were around to help if he needed it. And he had never once got lost.

Developing a Good Relationship with School

Given how much time a child has in school, it is important to feel you can trust your child’s teacher and school and it is worth investing time in supporting the school. Many parents find the prospect of talking to teachers quite daunting, and this is made even more difficult if you are talking to them about concerns about your child, which can make you feel more emotional yourself, or feel defensive about them. Try and go to all the parent–teacher meetings you are invited to and find out about topics that your child is learning about, so you can contribute as much as possible.

If you are concerned about something that is happening at school, ask your child’s teacher for a meeting and consider whether it would be helpful to include the SENCO. It can be very hard to know what is happening day-to-day in school and therefore it is best to go in with an open mind and focus on problem-solving rather than blame. Typically, teachers are more than happy to have regular communication with parents. Teachers are experts in education and child development and behaviour but not experts in your child’s medical condition. They are often reassured by regular update meetings and working together with parents. This is usually better than staying away and only going in when there is a problem. Don’t feel like you are making a nuisance of yourself; offer it right at the beginning: ‘Would it be helpful if I had a ten-minute update meeting with you once every half term or more frequently if there is a need?’

Dealing with Protecting Your Child – Managing Your Anxiety and Minimising Their Anxiety

Many parents find it difficult to know how much to trust the school to keep their child safe, and it can be hard to feel confident that a school can take care of an individual child’s needs in the context of a busy classroom. However, it helps a lot if you can have a plan which has been agreed with the school, so that they are clear about what your child’s needs are and you know that they have an action plan in place.

At times, children may lose their confidence and, if they have missed school for a period of time, they often find it hard to return. It can sometimes be genuinely hard to know whether to encourage a child to return to school who says they are feeling unwell and tired to ‘have a go’, or whether to give them a break and keep them at home. When children (and adults!) feel anxious, the natural response is to avoid whatever it is that makes them anxious, but this can sometimes result in making it even harder eventually to face the problem. As we all know, anticipatory anxiety can mislead you into thinking you really should not do something, when actually it is not nearly as bad as you thought it was going to be once you actually do it. Think how many times you have dreaded something but then found it wasn’t anywhere near as bad as you predicted. Often, it is not so much that a child is being manipulative and deliberately misleading – they are really convinced that it will make them feel worse.

On the other hand, if you over-protect your child and keep them away from school when they could have managed and would have felt better once there, they will never have the experience of seeing that actually it was not as bad as they had expected, and also not have the chance to learn to manage this sort of uncertainty. This could reduce their chances of developing new skills and having new experiences, and they will pick up from you that schools are dangerous places – which is not what you want them to believe.

Case Study – Andrew (7 years old)

Andrew had a lot of infections in his early childhood, so he missed a lot of days at nursery and, when it came to starting at primary school, he developed lung disease, which gradually deteriorated. He missed about a third of reception and Year 1 due to ill health and repeated hospital admissions. Unfortunately, towards the end of Year 1, he was involved in an accident out of school which resulted in a small fracture to his arm. Following this incident, he struggled to return to school.

He was then admitted to hospital following another lung infection and it took him nearly six weeks to fully recover. By then he was due to be in Year 2 but had spent less than a year in full-time school in total. He was behind in both literacy and numeracy, and did not have any friendship groups within school.

Both Andrew and his mother, Jane, were extremely anxious about him returning to school. Jane had reservations about allowing him to attend in the autumn/winter because of the higher risk of infection and wanted to wait until spring. However, his medical team advised he was well enough to return, so he was not eligible for home tuition.

A very gradual return-to-school plan was developed in conjunction with his class teacher, Andrew and his mother. They were able to identify particular times when he felt very anxious (for example, going into the playground in the morning with everyone rushing around or during playtime in boisterous games) and find ways to manage these situations. His mother was initially allowed to bring Andrew straight into the classroom, rather than having to manage the busy playground before school. During breaks, Andrew’s teacher chose a ‘buddy’ to be with Andrew each day, so he had someone with him while he got to know the other children better.

Both Andrew and his mother needed support from a psychologist to manage the anxiety that they felt during this return to school, but he did successfully reintegrate. He did need some additional support to help him catch up with the school work he had missed as well, but this was done within a small group in the classroom, so he was gradually able to reintegrate with his peer group.

Accessing Further Support for Children with Special Educational Needs

Some children do have physical or learning disabilities directly related to their medical condition, or to the treatment for it. Some of these children may be eligible for what is known as an ‘Education, Health and Care’ plan (EHC). EHC plans have been introduced as part of the new Special Educational Needs and Disability (SEND) Code of Practice published in 2015 and are gradually replacing the previous system of Statements of Special Educational Needs.

The definition of disability includes a ‘physical or mental impairment which has a long-term and substantial adverse effect on their ability to carry out normal day-to-day activities (Equality Act 2010)’. And a learning difficulty is defined as having a ‘significantly greater difficulty in learning than the majority of others of the same age’ (see Resources section for further information about special educational needs).

This system aims to ensure that support is planned in a ‘joined up’ way between education, health and social care and to ensure this is a collaborative process involving parents and children themselves whenever possible. The emphasis is on a more streamlined and briefer assessment process; for example, the local authority has up to six weeks from request to agree an assessment and then the assessment has to be completed within twenty weeks. The plans should explicitly identify outcomes that should be achieved, rather than the previous system of identifying support that will be provided. For example, the plan may include outcomes such as ‘Sara will increase her social contact with her peers by spending a part of her free playtime each day with another nominated child’. There is also the option for parents to have more control of how the budget is spent and to be involved in developing the right sort of provision for their child.

If you feel your child needs additional support in school due to a disability or special educational needs, first discuss this with your child’s teacher and SENCO. It is worth knowing there are free, impartial and confidential services to support parents with children with special educational needs and disability called Information, Advice and Support (IAS) Services, which were previously known as Parent Partnership Services (PPS). IAS Services are funded by their local authority; however, they are all expected to be at ‘arm’s length’ of the local authority and to provide impartial information, advice and support (see Resources section for contact details).

Remember, it is not necessary for the child to have an EHC plan in order to get some support in school – many needs can be met without an EHC plan. It is more important to focus on getting the sort of support that will help them to make progress in the school setting, rather than thinking you must have an EHC.

Case Study – Amal (14 years old)

Amal had a brain tumour when she was very young and had to have surgery as well as radiotherapy to treat this. The cancer has been cured but she has experienced some late effects of the treatment and now needs hormonal treatment. She is now fourteen and in Year 9 at school. Her parents feel that she is not learning as well as her older sister did at that age and they are concerned that this may be because of the cancer and treatment.

In particular, she seems to struggle to remember what she has learned and often appears to drift off and lose her concentration. She is quite conscientious and appears to try hard at school, including doing her homework, but her achievement levels are at the lower end of the range for her age. An assessment was carried out by an educational psychologist, who found Amal was achieving at about the right level for her own abilities, even though this was lower than her sister, who happened to be very able. She was able to make recommendations about how to develop Amal’s study skills, using a more structured approach to revision. She showed Amal how to draw up a revision timetable in which specific topics were allocated to relatively brief revision slots and, at the end of each session, Amal completed exam questions related to this topic. By focusing on a topic and actively testing her own knowledge as she progressed, Amal used her revision time much more effectively. This helped Amal feel more supported and confident for her GCSEs.

Key Points

•    School is very important for children but, for a child with a medical condition, it can be harder to access all the benefits of school.

•    It is natural to want to protect your child when they start or change schools – you may need to manage your own anxiety in order to prevent your child becoming anxious, too.

•    Develop a good relationship with school by attending any meetings about your child and checking with their teacher the best way of communicating with them.

•    Peer relationships are very important to children – help them manage difference to help them feel included and ‘normal’.

•    Times of transitions can be particularly difficult for children – remember, this is a process rather than a one-off event.


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