Protecting education for children with medical conditions and life-saving heart equipment for schools

Much of the unhappiness with the draft Children & Families Bill, now Act, stemmed from its exclusion of children with disabilities or medical conditions who did not have a specific special educational need. To get around this, the government put back the D for disability into the Bill and included a clause quite late in the process that covered provisions for children at school who had medical conditions affecting their school attendance or ability to access education in the same way as their peers.

A consultation was carried out and now the statutory and non-statutory guidance for "Supporting pupils at school with medical conditions" has been published. The guidance is for maintained schools, Pupil Referral Units (PRUs) and academies in England. It does not apply to Early Years settings and comes into force on 1st September 2014, along with the other provisions in the SEN reforms.

It also contains non-statutory advice for health authorities and "anyone who has an interest in promoting the wellbeing and academic attainment of children with medical conditions", including parents and carers, health service providers (presumably non-NHS) and independent schools.

Guidance Key Points

There are three main key points set out in the guidance:

1. Pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education.
2. Governing bodies must ensure that arrangements are in place in schools to support pupils at school with medical conditions.
3. Governing bodies should ensure that school leaders consult health and social care professionals, pupils and parents to ensure that the needs of children with medical conditions are effectively supported.

This guidance is for those children who have long term conditions that may mean they find going to school difficult and often damaging to already fragile health. In other words, children who are perfectly capable of learning in the same way as their peers but their illness presents a barrier which can limit access to educational settings.

I get a lot of questions sent to me by parents of children with  Ehlers Danlos Syndrome that my son (and I) also have, because this is also a condition that can cause difficulties with walking, writing, fatigue and pain, among other symptoms. This guidance will apply to these children too, unless they also have Asperger Syndrome, which is increasingly being seen as a co-morbid (existing together) condition with EDS, as it is with my son. In this case, your child may well be eligible for a new Education, Health and Care plan which brings together these three services in one integrated and statutorily enforceable plan. The exact criteria will be known when the full Code of Practice is passed and published, ideally before September 1st.

Children with many kinds of long-term conditions will often need support and medication at school. Far too often, parents have had to go into school to administer these or to take their children home half way through the day because the school cannot or will not provide this support. Sometimes, extended bouts of poor health or hospital treatment related to the condition also means that they cannot attend school. In these circumstances, most children just get five hours a week tutoring provided by the local authority.

I recently had one parent tell me that she had been told by her child's school that it, "wasn't suitable for a wheelchair to be used" so her son couldn't use his chair. This made attending school virtually impossible (and this, in any case would most probably fall under the "reasonable adjustments" criteria already existing in the Equalities Act 2010 because the need for a wheelchair would indicate that a child's medical condition had caused a disability.)

The guidance says "It is crucial that schools receive and fully consider advice from healthcare professionals and listen to and value the views of parents and pupils." This sentence is central to the principles of integrated support that the new SEN system is designed to bring about and which, at present, rarely happens. The guidance also considers the emotional impact of a long term condition on a child and their vulnerability to bullying.

Of particular interest to parents of children with no formal diagnosis, such as our columnist Renata Blower's son, Dominic and other "SWANs" (Syndrome Without a Name) is clause 14:

Schools do not have to wait for a formal diagnosis before providing support to pupils. In cases where a pupil’s medical condition is unclear, or where there is a difference of opinion, judgements will be needed about what support to provide based on the available evidence. This would normally involve some form of medical evidence and consultation with parents. Where evidence conflicts, some degree of challenge may be necessary to ensure that the right support can be put in place.

Where it says "some degree of challenge", I have been advised that this will be decided on a case by case basis. The DfE has clarified for me separately that, "The aim behind this wording is to recognise that sometimes there will be disagreement about which approach to take in terms of the support to be provided. We understand that it is not unknown for medical opinion to vary between,  for example, clinicians and consultants. It is therefore right that the evidence should be challenged so that an agreement can be reached on what support should be put in place."

I'm really uncomfortable about this as if there is a disagreement between medical professionals, school or parent, who wins? Certainly not the child.

Individual Healthcare Plan

The guidance introduces an "Individual Healthcare Plan" (clause 15) which is not to be confused with an Education Health and Care Plan which is the forthcoming replacement for the statement of SEN. I have sought clarification as to whether or not an IHP is statutory and the answer is NO.

The guidance document states that where something is typed in bold, it is statutory - i.e a '"must happen". So where the guidance says, "Governing bodies should ensure that the school’s policy covers the role of individual healthcare plans, and who is responsible for their development, in supporting pupils at school with medical conditions," this means that it is a legal requirement that a school must have a policy about individual healthcare plans, but the IHP itself is NOT statutory. Clear as mud eh?

Methinks they need to run stuff like this past us at SNJ first so it can be translated into language parents have a cat in hell's chance of understanding.

An IHP is aimed at recording the steps a school should take to help the child manage their condition and overcome any potential barriers to getting the most from their education. BUT just because your child has a long term condition, does NOT mean they will automatically get an Independent Healthcare Plan,

The guidance states:

Individual healthcare plans can help to ensure that schools effectively support pupils with medical conditions. They provide clarity about what needs to be done, when and by whom. They will often be essential, such as in cases where conditions fluctuate or where there is a high risk that emergency intervention will be needed, and are likely to be helpful in the majority of other cases, especially where medical conditions are long-term and complex. However, not all will require one. The school, healthcare professional and parent should agree, based on evidence, when a healthcare plan would be inappropriate or disproportionate. If consensus cannot be reached, the head teacher is best placed to take a final view.

***  My advice on this? Present your child's medical history and every intervention they have or need, clearly and logically. Read this guidance document carefully and thoroughly. Ask for help from a friend if needed. Print it off and make notes on the points in Clause 19 and how these points that are in bold, i.e. MUST be considered, affect your child. Think about your child's worst day and work with that. On a good day they may not need every point in a plan. Make sure that everything is included to help your child and the school cope with a bad day.   ***

Key points of an individual health care plan:

• The format of individual healthcare plans may vary to enable schools to choose whichever is the most effective for the specific needs of each pupil.
• They should be easily accessible to all who need to refer to them, while preserving confidentiality.
• Plans should not be a burden on a school, but should capture the key information and actions that are required to support the child effectively.
• The level of detail within plans will depend on the complexity of the individual child’s condition (as opposed to diagnosis-led)and the degree of support needed.
• Where a child has SEN but does not have a statement or EHC plan, their special educational needs should be mentioned in their individual healthcare plan.
• Individual healthcare plans, (and their review), may be initiated, in consultation with the parent, by a member of school staff or a healthcare professional involved in providing care to the child.
• Plans should be drawn up in partnership between the school, parents, and a relevant healthcare professional, e.g school, specialist or children’s community nurse, who can best advise on the particular needs of the child. Pupils should also be involved whenever appropriate.
• Partners should agree who will take the lead in writing the plan, but responsibility for ensuring it is finalised and implemented rests with the school.
• The governing body should ensure that plans are reviewed at least annually or earlier if evidence is presented that the child’s needs have changed.
• They should be developed with the child’s best interests in mind and ensure that the school assesses and manages risks to the child’s education, health and social well-being and minimises disruption.
• Where the child has a special educational need identified in a statement or EHC plan, the individual healthcare plan should be linked to or become part of that statement or EHC plan.
• When writing individual healthcare plans, the medical condition, its triggers, signs, symptoms and treatments and the pupil’s resulting needs must be taken into consideration. (This is more detailed in the document)
• Specific support for the pupil’s educational, social and emotional needs must be considered such as how absences will be managed, extra time needed for exams, rest periods, help catching up, counselling support.
• The level of support needed must be included and also who will provide it and their expected level of competency (do they need to be a healthcare professional?), who in the school needs to be aware of the child’s condition, how and by whom medication should be administered.
• Separate arrangements or procedures required for school trips or other school activities outside of the normal school timetable that will ensure the child can participate, eg risk assessments.

The guidance expects everyone involved with the child's care to take responsibility for ensuring they receive the education to which they are entitled. This includes the parents and the child themselves as much as they are able. But crucially, responsibility is shared by governing body of the school, the head teacher, school nurses, all staff, parents, the family's GP and the local Clinical Commissioning Group (the local NHS health authority), any medical specialists and paediatricians and the local authority. It appears that this policy will also become something that the school will be judged on in an Ofsted inspection. The new guidance calls on local authorities to provide support, advice and guidance and staff training so that the Indvidual Healthcare Plan can be carried out. This is not, however, a statutory duty, but a "should". However, in the past, the DfE has explained that a "should" is to be seen as strong advice to be met, unless the provider can prove that they are doing something that exceeds the guidance.

Children too ill to go to school

The guidance also covers children who cannot go to school at all because of their medical condition. It states that local authorities should work with schools to support pupils with medical conditions to attend full time and if a pupil would not receive a 'suitable' education in a mainstream school because of their health needs, the council has a legal duty to make other arrangements. This is already covered in existing guidance is a child is likely to be off for 15 days of more - and this is consecutive days or cumulative. This existing guidance, entitled "Ensuring a good education for children who cannot attend school because of health needs - Statutory guidance for local authorities was published in January 2013 but is scheduled for review in September 2014, presumably so it can be updated in the light of the SEN reforms, if necessary.

Unacceptable practice

The guidance lists "unacceptable practice" and I'm going to list these in full in case you do not have time to read the guidance:

• preventing children from easily accessing their inhalers and medication
• assuming that every child with the same condition requires the same treatment
• ignoring the views of the child or their parents
• ignoring medical evidence or opinion (though this may be challenged)
• sending children with medical conditions home frequently or prevent them from staying for normal school activities, including lunch, unless this is specified in their individual healthcare plans
• if the child becomes ill, sending them to the school office or medical room unaccompanied or with someone unsuitable
• penalising children for their attendance record if their absences are related to their medical condition eg hospital appointments
• preventing pupils from drinking, eating or taking toilet or other breaks whenever they need to in order to manage their medical condition effectively
• requiring parents, or otherwise make them feel obliged, to attend school to administer medication or provide medical support to their child, including with toileting issues. No parent should have to give up working because the school is failing to support their child’s medical needs
• preventing children from participating, or create unnecessary barriers to children participating in any aspect of school life, including school trips, e.g by requiring parents to accompany the child.

I know that many parents may feel quite emotional reading this list of things schools can no longer do to them and their children, I know I do. Reading it, it's hard to believe these things actually happen but I know from personal experience of several of them when my boys were in mainstream that they do. And from September, you can make sure these things are eradicated from our children's experience of school.

Complaints

Now, this is where I get confused. The document sets out the different routes for parents if they wish to complain when their child is in a mainstream or an Academy school. The final sentence says

Ultimately, parents (and pupils) will be able to take independent legal advice and bring formal proceedings if they consider they have legitimate grounds to do so.

Does this mean parents of Academy pupils or both Academy and mainstream pupils? And bring formal proceedings to which court or Tribunal? And who would you bring formal proceedings against? The governors? The local authority? I really think this section needs greater clarity of the government's intentions. Not being a lawyer, it's virtually impossible to tell what to do. It almost reads like they ran out of time and just had to shove any old paragraph that looked a bit legal-ish down. In what is otherwise quite a comprehensive document, it is a disappointment. Of course, we all hope that people will live up to their expectations, but on past evidence, we know that sometimes, they don't and I really would like to see this section have an appendix added making to much easier to understand what a parent and child's rights are (if any) to ensure that what is written down is actually provided. It shouldn't be too hard to do, but it is vital that this is pinned down. There is no mention as to who funds the provisions of an IHP, so I am assuming that there is no funding attached. Will the school be expected to fund this from its notional SEN or another budget? Or will the health and care services involved have to pitch in? Or will the local authority be expected to stump up? As I am not a funding wizard, I would love someone to enlighten me about this, because it would be disastrous if a war erupted over between providers over where the money was coming from to pay for the training, extra staffing and so on. I would also like clarified that where it says, if a child already has a statement or EHCP, then the individual healthcare plan becomes part of it. So does that make it statutory for these children? I think we should be told.

A life-saving Defibrillator deal

Finally, among other issues for consideration in the guidance is the recommendation that schools purchase a Defibrillator. This will be music to the ears of heart rhythm charities such as Arrhythmia Alliance and STARS, both of whom I have been involved with through Son2's diagnosis of Reflex Anoxic Seizures (Vasovagal Syncope) when he was a toddler. You can read our story in the latest STARS newsletter. They have been leading a campaign for public access to Automated External Defibrillators for some time and yesterday also saw the Department for Education announce a plan to seal a deal allowing schools to buy defibrillator machines at a reduced price in time for the autumn term. This is excellent news as we hear far too often about children who have lost their lives after suffering a Sudden Cardiac Arrest (which is not the same as a heart attack) while playing sport at school. Arrhythmia Alliance has had the support for footballer Fabrice Muamba, who collapsed during a match and was only saved through prompt and sustained intervention from a doctor using a defibrillator as he lay lifeless on the pitch. I hope EVERY school invests in a defibrillator. SCA is rare, but it happens and you often have no warning or signs before hand. Screening is available for young people from aged 14 up privately, but even that is no guarantee that an electrical cardiac defect will be detected. Please show this to your school if you think they should get a defibrillator installed.

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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