Parents and campaigners are raising urgent concerns about the government’s forthcoming overhaul of Special Educational Needs and Disabilities (SEND) in England. Media reports indicate ministers are considering major changes to Education, Health and Care Plans (EHCPs), with some briefings suggesting restrictions or a phased removal for all but the most complex cases. The Education Secretary has not ruled out changes to EHCPs, while stating that reforms aim to “strengthen” support; full proposals are due in an autumn White Paper.
For families of children with ME/CFS or Long Covid, this matters. EHCPs are currently the legal mechanism that secures individualised support across education, health and social care up to age 25. Parents and sector leaders fear that narrowing EHCP eligibility could push more children out of mainstream education or leave them without the adjustments they need. Recent reporting also highlights mounting pressure on local SEND budgets and a system already struggling to meet need.
What must not be lost in any reform is adherence to the 2021 NICE Guideline for ME/CFS (NG206), which applies to children and young people as well as adults. NICE is clear about energy management; the risks of post-exertional symptom exacerbation; the need for flexible, pupil-led adjustments; and the importance of liaison between health services and the school. It also states that graded exercise therapy should not be offered and that cognitive behavioural therapy is not curative.
Crucially for education, NG206 recommends that clinicians work with schools to: provide information about ME/CFS and the child’s needs, discuss a flexible approach to learning (for example, shortened days, remote learning, rest breaks), and inform parents about EHCPs and how to request one. It also points to statutory Department for Education guidance on supporting pupils with medical conditions, which schools must follow unless there is a strong reason not to.
Our priorities for the White Paper
- Retain the legal right to an EHCP in mainstream and special settings, with eligibility that reflects fluctuating, energy-limited conditions such as ME/CFS or Long Covid.
- Embed NICE NG206 across education: recognise post-exertional symptom exacerbation, require flexible timetables and remote options where needed, and prohibit unsafe activity‑pushing approaches in schools.
- Uphold and strengthen the Department for Education’s statutory guidance on supporting pupils with medical conditions (including Individual Healthcare Plans) and align it explicitly with NG206.
- Resource early, needs‑led support rather than attendance pressure, with meaningful training for teachers and SENCOs. Reforms must not reduce lawful entitlements.
- Co‑produce changes with disabled people’s organisations and parent groups, and publish impact assessments for energy‑limiting conditions.
What parents can do now
Use the template letter below to write to your MP, asking them to seek cast‑iron assurances before the White Paper is published. If your child has ME/CFS or Long Covid, reference the NICE Guideline (NG206), your child’s needs, and the adjustments that already help.
Template letter for parents to send to their MP
Subject: Protect EHCP rights and embed NICE NG206 for children with ME/CFS or Long Covid in the SEND reforms
Dear [MP’s name],
I am a constituent and the parent of [child’s first name], aged [x], who has a clinical diagnosis of ME/CFS or Long Covid. My child experiences [examples of symptoms here: e.g. post‑exertional malaise, brain fog, hypersensitivity to external stimuli, symptom exacerbation]. Without careful energy management and flexibility at school, their symptoms flare and their health can deteriorate.
I am writing because the government plans to publish a White Paper on reforming SEND later this year. Recent reporting suggests that Education, Health and Care Plans (EHCPs) could be restricted or phased out for many children, even though EHCPs are currently the legal route to coordinated support across education, health and social care. As a family, we are deeply concerned that any reduction in lawful entitlement would harm children like mine, who need tailored, consistent adjustments to access education. [If applicable: My child currently has/is awaiting an EHCP; give examples of how protracted or difficult the process of obtaining this has been].
For children with ME/CFS or Long Covid, the 2021 NICE Guideline (NG206) sets out what safe, appropriate support looks like. It applies to children and young people and recommends:
- Energy‑management‑led, pupil‑centred care that recognises post‑exertional symptom exacerbation.
- A flexible approach to education, including reduced hours, rest breaks, pacing of cognitive activity, remote learning where needed, and liaison between clinicians and school.
- No graded exercise therapy; cognitive behavioural therapy is not a cure.
- Information for parents on EHCPs and how to request one; and adherence to the Department for Education’s statutory guidance on supporting pupils with medical conditions, including use of Individual Healthcare Plans.
I am asking you to raise the following with the Secretary of State for Education before the White Paper is published:
- Will the government guarantee that the legal right to an EHCP will be retained in mainstream and special settings, with eligibility criteria that reflect fluctuating, energy‑limited conditions such as ME/CFS or Long Covid?
- Will the White Paper explicitly embed NICE NG206 in education policy and statutory guidance, including recognition of post‑exertional symptom exacerbation and the requirement for flexible, pupil‑led timetables and remote provision where appropriate?
- Will the Department for Education confirm that its statutory guidance on supporting pupils with medical conditions will be upheld and aligned to NG206, and that Individual Healthcare Plans will complement (not replace) EHCPs where needed?
- What steps will be taken to resource early, needs‑led support (training for teachers and SENCOs; specialist advice), rather than placing attendance pressure on children whose conditions worsen with over‑exertion?
[Optional personal example] For example, when [child’s name] attends for two full days in a row without scheduled rest, they develop severe post‑exertional symptom exacerbation 24–48 hours later (pain, dizziness, thinking and memory problems), which can keep them out of school for days. When school honours a shorter day, quiet rest breaks, reduced homework, and remote participation when unwell, attendance is steadier and health safer. These adjustments are consistent with NG206.
Please would you:
- Write to the Secretary of State with the questions above and share the response with me; and
- Meet with me (and, if possible, the ME Association) to discuss how the reforms can protect children with ME/CFS or Long Covid.
Thank you for your help. I look forward to your reply.
Yours sincerely,
[Your name]
[Full address and postcode]
[Email]
[Phone]
Sources
- BBC coverage on proposed SEND changes (July 2025)
- The Guardian reporting on sector concerns about SEND overhaul (July 2025)
- NICE Guideline NG206 (2021): Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management (includes children and young people)
- Department for Education: Supporting pupils at school with medical conditions (statutory guidance)