Managing medical conditions in schools

Information for school staff around supporting children and young people with medical conditions in school.

Please see the condition specific information for advice on which health professionals are able to provide advice and training.

If you are unsure who can help, please contact the School Nursing Service or Designated Clinical Officer by email at SchoolNursingAdvice@nelincs.gov.uk or designatedclinicalofficer@nelincs.gov.uk.

Guidance

The impact for pupils of having long term medical conditions or complex health needs can be educational, social and emotional. They may become self-conscious, bullied, anxious or depressed. Long term school absence may lead to poor education attainment or poor integration with peers.

Guidance on supporting pupils at school with medical conditions came into force on 1 September 2014. This places a statutory duty on governing bodies of all state supported schools, pupil referral units (PRUs) and academies to ensure that all children with medical conditions are properly supported so they can achieve their academic potential. Roles and responsibilities of the main agencies working with school aged children are highlighted and the process for managing children with medical needs is included.

In general, the guidance recommends all agencies working together to support children and families, however the school is responsible for ensuring it is implemented.

The main messages from the document are that:

Governing bodies are legally responsible and accountable for fulfilling their statutory duty, however functions can be allocated to head teachers or other staff as appropriate.
Schools should establish relationships with relevant local health services to help them and to take advice from health care professionals.
Where children are disabled or have special educational needs (SEN) the guidance should be read in conjunction with the SEN code of practice.
No child with a medical condition should be denied admission to school. However, in line with safeguarding duties they do not have to accept a child in school where it would be detrimental to their health or others.
All schools should have a policy in place that is reviewed regularly and easily accessible to parents and pupils.
Arrangements should be in place in time for the start of the new term/school year or at least 2 weeks after being notified of a new diagnosis.
Sufficient staff should receive suitable training and be competent before taking on responsibility for supporting children with medical conditions; any member of school staff should be able to respond appropriately when a pupil with medical condition needs help; this implies normal duty of care.
The full Department for Education (2014) guidance is available on GOV.UK – Supporting medical conditions

These should be developed especially where medical conditions are long term and complex, however not all children will need one. IHPs may vary and the level of detail will depend on the complexity of the child’s condition and how much support is needed in school.

The aim of the IHP should be to capture the steps a school should take to help the child manage their condition and overcome any barriers in getting the most from their education. Children with Education Health and Care (EHC) plans should have their IHP integrated into this. Each IHP must be reviewed at least annually or when a condition changes, and this timescale should be agreed when it is drawn up. Pupils should contribute as much as possible to their individual healthcare plan and comply with it. Parents are key partners in providing up to date information to the school, developing and reviewing the IHP when necessary.

Templates for Individual Healthcare Plans are available on the GOV.UK – Supporting pupils at school with medical conditions.

School Nursing Service

The School Nursing service works in partnership with other agencies to support the health and wellbeing of school aged children. School nurses would not usually have an extensive role in ensuring that schools are taking appropriate steps to support children with medical conditions; their main roles and responsibilities are to:

Work together with schools, local authorities, health services and families to ensure that children with medical conditions receive a full education.
Provide support and advice in developing individual health care plans for pupils with complex health conditions i.e. those on an EHC plan, life limiting conditions.
Provide advice, support, information and guidance to schools on training to include preventive and emergency procedures to enable staff to act quickly. Providing confirmation of staff proficiency in care of the child, medical procedures or providing medication. The school nurse has no role as a ‘sign off mentor’ for school staff who choose to administer medication, they cannot accept responsibility or accountability for medication administered by a non-registered person.
Training – The school nursing team offer an ‘awareness raising’ training session which includes medicines management, asthma and anaphylaxis. This takes approximately 20 minutes to deliver, however you will need to allow time for questions. Following the training you will receive a copy of all the training slides. We review our training slides on a yearly basis to ensure they are kept up to date with any changes to the management of conditions or national policies.

Children’s Community Nursing Team

For schools that have pupils who are diagnosed with specific health conditions such as diabetes or epilepsy, support will be provided by the Community Nursing Team who can be contacted on 03033 303113. They will provide their own care plans for schools to use and also provide training updates. Specific information is available under the condition tabs of this page.

All children with a diagnosis of asthma should attend their GP on a yearly basis for an asthma review, this will involve a peak flow test to ensure their medication is working. Parents should update schools if changes are required.

Children need to have quick access to their inhalers, it is no good having them in a locked cupboard when they are doing PE outside.

Understand the impact that triggers can have on children’s asthma:

Emotions, such as laughter, excitement or anger, can affect the way we breathe, especially if we’re laughing uncontrollably or sobbing because we tend to breathe more quickly. This can trigger asthma symptoms in some children.
Exercise can trigger asthma symptoms in some children because when they breathe in through their mouth, the air is colder and drier (rather than in through their nose, when the air is warmed up in the nostrils). In some people with asthma, the airways are sensitive to these changes in temperature and humidity and they react by getting narrower.
Cold or damp air can enter your child’s airways and trigger them to go into spasm, causing asthma symptoms, such as coughing, wheezing, shortness of breath and tightness in the chest. Get the child to wrap a scarf loosely over their nose and mouth on cold or damp days – this will help to warm up the air before they breathe it in.
Pollen is a tiny powder-like substance produced by certain types of trees, grasses and weeds. It is spread by insects and the wind. An allergy to any of these types of pollen is known as hay fever. Ensure you close windows in the classroom to help alleviate this and speak to parents to see if the child is taking any hayfever medication on a regular basis.

Some younger children need support in taking their inhaler, do not leave them on their own to do it unless this is within their action plan.

Talk to a child even if a child is still young, explain to them how their asthma medicine helps them to stay well. This will help them understand why they have to take it and feel more motivated to remember to take it. Try giving their inhalers and spacers pet names or decorating them with stickers. Reassure a child that it’s fine for them to talk to you about any worries they’ve got about their asthma.

Get into a good routine getting a child to take their inhaler at the same times, in the same place every day, means it will become part of their everyday routine, and they’ll be less likely to forget to take their medicine.

Asthma attack treatment

These steps could save a child’s life so make sure you know them – and share them with other people who look after your child, too.

Help them to sit up straight and stay calm.
Help them take a puff of their reliever inhaler (usually blue) every 30-60 seconds, up to a maximum of 10 puffs.
Call 999 for an ambulance if:
- their symptoms get worse while they’re using their inhaler (cough, breathlessness, wheeze, tight chest or tummy/chest ache)
- they don’t feel better after 10 puffs
- you’re worried at any time, even if they haven’t yet taken 10 puffs.
While you wait for the ambulance, reassure your child. Repeat step 2 if the ambulance takes longer than 15 minutes.

Remember: you are not wasting anyone’s time

Not sure whether a child really needs emergency help? It is always better to be safe, so don’t risk having to look back and wish you had got urgent treatment for a child.

Further information on managing asthma in school is available on Asthma.org.uk

The Department for Health (2015) Guidance on the use of emergency salbutamol inhalers in schools is available on GOV.UK – Emergency asthma inhalers for use in schools

Day-to-day Care

It is important to think of any areas where allowances may need to be made for a child to have extra time, for example, to put on emollient after swimming, or to collect their packed lunch, or to go to have any medication they require. Remember to consider lessons that a child may take part in and the potential allergens which they may come into contact with. Research has shown that children who have asthma and allergies often have reactions due to triggers in the classroom. Some simple steps to reduce allergen exposure at school include:

Do not let a child with asthma, eczema or house dust mite allergy sit on dusty carpets.
Do not allow a child with hayfever to sit near an open window in the summer.
Minimise exposure to heat sources for children with eczema.
Prevent exposure to allergens when using art and craft products.(This includes glues, paints, and old food cartons that may include food allergens i.e. for crafts and models).
Take care when creating nature tables or pet corners with animal foods and touching of pets.
Take care with the choice of class snacks if children have a food allergy.

Studies have shown that allergic children may be more prone to sleep disturbance which could affect their concentration levels and behaviour. These problems may be due to disturbed sleep or irritation which makes the child feel more agitated at times or lacking in concentration and more tired than usual.

Make sure a child knows that it is important to tell someone if they feel any symptoms are starting even if they have been given a ‘forbidden’ food by a friend or eaten something by mistake. Sometimes children do not want to get their friends or themselves into trouble, and the importance of telling someone quickly is forgotten. This can lead to a more serious situation so it needs to be handled delicately.

School meals and catering

Food allergy is increasingly understood by those working in schools, so most schools have processes in place to minimise risk to children with food allergy. Two common approaches are to have:

A no-nut policy – this means parents are told not to include nut- based or foods made from nuts or peanuts in children’s packed lunches.
A no food-sharing policy – this means that all children, not just those with allergy, only eat their own food. In this way there can be no confusion or need for decisions to be made about whether a child with a food allergy can or cannot have some of their friend’s food.

No sharing snacks

Break times can be tempting; try to emphasise from a very early age that a child must not share snacks and ask staff to give gentle reminders to all the children about this rule. This could be done so a child doesn’t feel they are the only one who has to keep the rule.

Special treat days

Ask parents to supply any special snacks or “birthday treats” in a labelled tin (the teacher can then give these out if other children bring in treats for birthdays).

Seasonal allergies

If a child has a seasonal allergy, ensure parents are aware of the effect it is having in school so they can visit the GP. Try avoidance techniques or measures to eliminate exposure to allergens.

Cookery

For cookery classes, it may be best if parents supply the ingredients, or ensure that the whole class cooks with ingredients that are safe for any allergic children in your care. However, there may be other children with different allergies who may are not able to use the same ingredients as another child, so the practicalities of this must also be considered.

Activities

Check activities such as playdough, art lessons, nature tables and care of the class pets. Be especially aware of any contact allergies, such as eczema, which could be made worse by some activities.

Sport

For PE and Games, make sure all staff are aware of the children who have asthma. Reminders from staff may be necessary about taking inhalers/Epipens to sports fields (and especially off site).

Other children

Explaining to other children about a child’s allergies could be done by the child and teacher. Children are naturally inquisitive and will want to know why a child has to avoid certain things, so it is easier to be open and discuss any issues surrounding the allergy that the children should be aware of. Circle time is a good environment to introduce the subject of allergies to other children and to talk about how to help an allergic child deal with their allergy. It can be useful to explain about situations where a child can and cannot take part, for instance, other children can often think that they are being kind by offering sweets etc., to an allergic child so that they are not left out. They may also not understand why some children cannot take part in activities, such as sport, and it can be helpful for teachers to explain this to classmates, even quickly when starting an activity where one child cannot take part for medical reasons. The most important thing is that a child feels included and secure, and that the other children do not feel they have to be kept apart from them.

Further information about allergies for schools is available on Allergy UK

Adrenaline autoinjectors

National guidance is that patients requiring adrenaline autoinjectors (e.g., epipens) should carry 2 at all times which means that children and young people do not require separate supplies prescribed for school in addition to home.

For guidance on the use of adrenaline auto injectors in schools go to GOV.UK – Using emergency adrenaline auto injectors in schools

Template care plans for children with adrenaline autoinjectors are available on bsaic.org

Understand that bowel and bladder problems or delayed control may be the result of a number of factors – most of which are outside the child’s control.
Be alert to the potential for bullying and name calling by addressing any accidents in as discreet a way as possible.
Ensure the child has access to fluids and encourage this on a regular basis during the day.
Consider suitable arrangements for the child to be able to discreetly leave the classroom should they need to access the toilet (toilet passes that can be handed to the teacher avoid embarrassment).
Allow the child access to a suitable ‘user friendly’ toilet where their privacy and dignity can be maintained.
Always seek to promote the independence of the child where possible to allow them to self-manage their toileting needs.
Ensure the child has access to the necessary cleaning provisions including a good supply of toilet tissue and also moist tissues where appropriate (to be supplied by parents).
Encourage the child to practice good hand hygiene following use of the toilet, also ensuring staff following the necessary infection control procedures when necessary.
Where necessary, make arrangements with parents/carers for spare underwear/clothes to be available in school and for these to be stored in an accessible place for the child.
It can be useful for the child to be aware of at least one designated staff member who is aware of their difficulties, who the child can easily access if they are in need of any support.
If necessary, arrangements should be made for a designated staff member to discreetly encourage the child to visit the toilet at a particular time(s) during the day.

Further information is available via the ERIC website

Monitor them

Parents will often tell you that their child gets itchy at a certain time of day. As they have identified this pattern they know to look out for it and to be prepared. See if you can identify a similar pattern in the child’s itching at school. Share what you’ve found with the parents so you can work together to identify what’s causing it – tiredness, difficulty understanding a particular subject, a classroom that gets very hot in the afternoon, etc.

Equally, if the child is especially itchy one day or one week, inform the parents in case they need a different cream, or need to moisturise more during school hours or are reacting to a substance or situation at home or at school. Consider an individual healthcare plan if the child requires the use of emollients/creams in school.

Use distraction

As well as openly scratching, a child may generally become fidgety and restless when they are feeling itchy. If the children are working individually, go up to the child and ask how they are getting on and chat with them and do the same with other children on their table. If you’re talking to the class as a whole, give them a role in the talk such as holding up a prop or taking part in a scene.

Get them up and moving around by asking them to fetch you something from a cupboard. Busy hands and minds don’t have time to scratch so involve them and some other children in a fast-moving task such as solving problems as a team against the clock.

Eliminate Possible Triggers

Unfortunately eczema is, by its very nature, ‘itchy’ so we cannot alleviate the symptom completely. However, there are lots of things that make the itching worse which can be addressed such as:

Soap and water
Temperature
Sweat
Wet and messy play
Clothing and uniform
Pollen and Dust
Carpet
Swimming

Talk, talk and talk

Encourage a good two-way communication with parents so that you know how the child is doing at home and are aware of any relevant issues and so that the parents know how they are getting on at school.

In addition, make sure that the child knows that you are always there to talk to. Children with eczema are often more aware than their parents might realise of the demands and constraints that their condition places on the family and can, as a result, shy away from telling Mum and Dad things as they don’t want to upset them.

Further information is available on eczema.org

The Children’s Epilepsy Specialist Nurse will support schools with completing a care plan and with annual updates for any child in any setting with a diagnosis of Epilepsy.

Training is also provided which is child specific and includes:

How the child’s seizures present so staff know what to look out for
How seizures effect a child on a day to day basis, including the impact on learning
Management of seizures within the school setting
Training on administration of rescue medications including administration devices

The Children’s Epilepsy Nurse can be contacted on 03033 304232.

Advice and support is available from the Children’s Diabetes Nurse Specialists to schools with writing an individualised health care plan for each child with diabetes.

The team also offer training to each school as needed which can focus on general diabetes information as well as specific training about the child’s individual care needed in school.

The Children’s Diabetes Nurse Specialists can be contacted on the following number: the DPOW 03033 303113. This line has an answer machine for messages if the team are not available. The answer machine is listened to regularly through the working day Monday to Friday 8-5pm, but not weekends of bank holidays.

Parents/carers are given the Rainforest Ward number for advice at evenings/nights, weekends and bank holidays.

Advice is available to mainstream schools from the Children’s Complex Health Nurse regarding children and young people up to the age of 18 years with complex clinical health issues.

The Children’s Nurse Educator supports children, young people, and their families in ensuring carers or teaching staff are confident, competent and understand the management of the young person’s clinical needs. This allows them to access settings and recreational activities of their choosing.

The team can be contacted on 01472 323660.

What are PANS and PANDAS?

PANS – Paediatric Acute-Onset Neuropsychiatric Syndrome.

PANDAS – Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANS and PANDAS are conditions that often appear very suddenly and affect the physical and mental health of children and young adults. They develop in the wake of common infections (such as Covid-19, chicken pox, influenza, or strep A in PANDAS cases), when the infection subsequently causes a misdirected immune response and/or brain inflammation.

Onset of symptoms is often (but not always) abrupt. Overnight, children with PANS and PANDAS can go from being happy, healthy, and well-adjusted to being desperately ill. Symptoms such as severe obsessive-compulsive behaviours, motor and vocal tics, behavioural regression and crippling separation anxiety are a few of the most common symptoms. Rage, eating restriction, sleep disturbance and urinary difficulties are also frequently observed. Children with these conditions also suffer with extreme sensory sensitivities, hallucinations, self-harm and suicidal thoughts.

Lack of awareness and understanding in the UK at present means that many children are left undiagnosed and without access to appropriate treatment.

PANS and PANDAS are conditions with a very high risk of long-term disability, exclusion from society and failed education. Better awareness is needed in the UK to ensure that these children receive the simple treatments they need, and the right supports as they heal.

What are the impacts of these conditions?

Research in the US states that 1:200 children are affected. If comparable in the UK, it would mean that PANS and PANDAS are a part of everyday life for 51,000 UK children. Incidence is growing as the conditions become better understood, but the majority of children remain undiagnosed for too long.

The impacts of these conditions are devastating and wide-ranging both for the child affected, and for those caring for them.

Children and families living with PANS and PANDAS experience the impacts in many different ways.
Health impacts The symptoms of PANS and PANDAS are both physical and psychiatric. Symptoms may vary from one child to the next, or indeed (as this is usually a relapsing-remitting condition) from one relapse to the next.

Examples of the physical impacts of these conditions are onset of urinary incontinence, sensory sensitivities so severe that a child may be unable to tolerate clothing, motor tics which may be so violent they leave the child in pain, or sleep disturbance which alters the circadian rhythm so dramatically that functioning during daylight hours is impossible.

The neuropsychiatric symptoms leave many children housebound, unable to leave their parents’ side, plagued by intrusive thoughts, unable to eat normally, and very often with uncharacteristic bouts of rage and aggression. Obsessive-compulsive behaviours are often so severe they take hours of each day to complete.

A third of affected children in the UK are reported to have missed at least 6 months of school. 19% of children were reported to have missed more than a year.

Educational Impacts

Brain inflammation in these conditions causes numerous psychiatric, cognitive and physical symptoms. As a result of this, children can change rapidly from thriving in schools to developing severe and complex Special Educational Needs (SEN) across all four of the ‘Broad Areas of Need’set out in the Special Educational Needs and Disabilities Code of Practice (2015)
Lack of awareness amongst education professionals means that appropriate educational accommodations and modifications are not put in place to support the child. Sadly, it also means that inappropriate strategies are often unwittingly used in schools. This results in additional trauma PANS PANDAS UK Reg Charity no. 11784884 www.panspandasuk.org
Attending school on a full or even part-time basis for children with PANS and PANDAS can sometimes be difficult and, for many, impossible. This leaves families struggling to cope with a child who is not physically or psychologically well enough to attend school, yet faced with external pressures (financial, social and even legal) to ensure that they still do so.

Social impacts

For a child suffering with PANS and PANDAS, normal social activity is often severely impacted. Cognitive and behavioural decline make it difficult for sufferers to interact at the same level as their peers. Sudden onset of OCD behaviours and/or tics is difficult for children to adapt to, and extreme separation anxiety make both school and extra-curricular activities difficult to engage with.

Moreover, families and carers of sufferers also report high levels of social isolation. Caring for such very ill children is often an all-consuming occupation. Lack of awareness and understanding may lead to people incorrectly assuming a child’s behaviours are down to poor parenting, or trauma in the home.

Financial impacts

Severity of symptoms in children and young people with these conditions often means that a parent or carer has no option but to leave paid employment to care for their child. The dramatic onset of these illnesses means that families are ill-equipped to cope with this sudden change in fortunes, and struggle to find the support to apply for financial assistance.

What support is available?

At present, awareness in the UK around these conditions is low but beginning to grow.

Children, young people and their families can be directed to PANS PANDAS UK. This is the only UK charity supporting children and families living with these conditions. They provide information, advocacy and community support to patients and carers. They raise awareness of the symptoms and treatment options for healthcare professionals so that they are better equipped to recognise when a child may have PANS or PANDAS.

PANS PANDAS UK also provide training in educational settings.  Since 2021, the first CPD accredited teacher training package for these conditions has been rolled out in Norfolk to the Educational Psychology Specialist Support Team, the Medical Needs Team and the Inclusion and SEND teams.

“Amazing training. Will raise awareness and support with improved, earlier identification of potential PANS/PANDAS. We will consider commissioning training for our wider team and SEND Forum”

“A really emotive and informative session. Made more touching by the real-life stories shared. It’s made me aware of the range of things to look out for but also how easily it can be misunderstood/misdiagnosed for something else.”

The PANS PANDAS UK website is also an excellent resource for educational and medical professionals looking for more information on PANS and PANDAS.

What medical provision is available?

Until very recently, targeted healthcare provision for these children has been patchy, with very few GPs recognising the symptoms and most children being referred exclusively to CAMHS, where lack of awareness has often led to misdiagnosis with late onset ASC (autism spectrum condition), or a psychiatric disorder such as OCD (obsessive-compulsive disorder or ADHD (attention deficit hyperactivity disorder.

Diane Palmer, Associate Director of Nursing at Norfolk and Suffolk Foundation Trust is building a pilot proposal for the UK’s first dedicated and funded multi-disciplinary service for children with suspected or diagnosed PANS and PANDAS. Diane is exploring opportunities to work with scientific researchers to create clinical trials and is also building relationships with the Acute Trust paediatricians and neurologists.

Further information and resources

Resources for educational professionals:

Resources for school nurses:

Resources for families:

Further resources for SEND professionals, Speech and Language Therapists and Occupational Therapists:

Educational Resources for PANS and PANDAS (padlet.com)

This information has been provided by and published with the permission of PANS PANDAS UK.

Managing common illnesses, outbreaks and incidents

The following link will take you to the latest Government advice regarding managing infectious diseases in education settings: Managing outbreaks and incidents – GOV.UK (www.gov.uk)

Information is also available regarding common childhood illnesses which can be shared with parents/carers for awareness: How long should you keep your child off school – checklist poster (text version) – GOV.UK (www.gov.uk) and Managing specific infectious diseases: A to Z – GOV.UK (www.gov.uk)