A message from the NNPCF steering group.

An extraordinary 18 months

No-one could have anticipated what was to come in February 2020. We knew that the coming year would hold challenges and opportunities for parent carer forums – the shortfalls in services experienced by our children, the SEND review and the NHS Long Term Plan were quite enough to contend with. On top of this, the coronavirus pandemic added new harms for our children and exacerbated existing issues.

You have risen to the challenge

The work you have done through this period has been extraordinary. Forums have adapted to the new normal and laid on virtual coffee mornings, distributed information packs, offered peer support, signposted to essential services, conducted surveys. Most importantly you have kept shining a spotlight on the issues – from children with SEND being denied school places to the unilateral closure of many essential respite services. It is even more remarkable that you did this whilst caring for and home schooling your children.

But it was your work that enabled the NNPCF to make essential changes to the response to the pandemic, such as changing lockdown guidance to better support young people with SEND (e.g. being able to go out more than once a day); enabling catch up funding for schools to be spent on SEND specific services such as therapies; and ensuring that return to school guidance emphasised holistic wellbeing rather that behaviour and attendance.

The value of forums has been recognised

Forums have grown in stature, prominence and influence over the year. The value you add has been recognised in the increase in funding offered by the DfE for the coming year. The NNPCF is joining more senior boards and has had more opportunities to represent your views than ever before.

But we know the future is going to be tough

However, we all know that many of our children have had a terrible time and we will face new challenges. The old issues in the SEND system have not gone away and new ones have emerged. The SEND review and the NHS Long Term Plan remain priorities.

Thank you

We are incredibly proud to represent such a passionate, knowledgeable and dedicated group of people. Without your hard work, the NNPCF would not have been able to make the difference we have.

Our children will need your energy and focus over the coming term so please take the opportunity to have a well-earned break from forum work over the summer holidays.

We hope you get the break you deserve.

Thank you and see you in the autumn.

The NNPCF Steering group


Covid 19 vaccinations for children – an update

Following yesterday’s announcement, NNPCF were invited to attend a meeting today with representatives from the Joint Committee on Vaccinations and Immunisations (JCVI) , NHSE, DfE & other stakeholders regarding the Covid -19 vaccination offer to some cohorts of Children and Young People (CYP).

We sought clarification of which cohorts of CYP would be eligible for the vaccination, and how families would be informed.

The vaccine will be offered to the following groups of CYP in England:

CYP at high risk themselves* (ages 12-15)

CYP living in immunosuppressed households (ages 12-15)

YP aged between 17.9 yrs. and 18yrs.

Young people aged 16 and 17 who are at higher risk of Covid 19 will continue to be offered the vaccine.

*This cohort is stated as those with severe neurodisabilities, Down’s syndrome, immunosuppression and multiple or severe learning disabilities. This list is dynamic and as such will be under constant review based upon evidence collected.

Information to contact these cohorts with be taken from health records data and invites will be sent out via either GP or the NHS route. The invite to book the vaccination should be sent out before the end of August. As with all decisions it was made clear that this should be undertaken in co-production with CYP and their parent carers.

If you or your members have any questions about their eligibility, they should contact their GP or paediatrician.

Education Support for CYP with SEND Uncategorized

The Foundation for People with Learning Disabilities launches PELICAN – Promoting Emotional Literacy in Children with Additional Needs.

The Foundation for People with Learning Disabilities is delighted to be launching PELICAN – Promoting Emotional Literacy in Children with Additional Needs.

Pelican is a set of free web-based materials for children and young people with complex learning needs and or learning disabilities and people who support them.

Pelican helps staff, parents and carers to develop emotional literacy, wellbeing and resilience in children with learning disabilities and autism. Peli and Tou introduce you to the PELICAN framework through a simple visual  story. Peli is scared to fly but Tou is on hand to help.

This is a much needed resource that supports teachers and parents to support children with additional needs.


Guidance for Parent Carer Forums on January national lockdown

With new national lockdown measures announced at 8pm on Monday 4th January we felt it appropriate to update our member Parent Carer Forums, and their communities, on what we can now do in this current climate to promote best practice locally and continue to champion coproduction and person centre approaches.

The NNPCF Steering Group have compiled the below document to share our current thoughts and provide clarity on where we will continue to share Parent Carer Forums experiences and insights to inform and influence national policy and decision making moving forward.


January Schools opening guidance – some points to note for special needs pupils

Yesterday the government released updated guidance on the opening of schools in January.

You can find the latest guidance here:

Headlines for children and young people with SEND are. You will see in green italics, those areas in which we are seeking further clarification:

  • Return dates for primary and secondary schools & colleges in England
    • 4 Jan – majority of primary schools start returning
    • 4 Jan – secondary schools and colleges to provide remote education for exam years and face to face for education for vulnerable and critical worker children (this includes children with an EHCP)
    • 11 Jan – face to face education for exam years and vulnerable and critical worker children and remote learning for other secondary school and college years
    • 18 Jan – secondary school and college students return for face-to-face education
  • All pupils in special schools are able to attend from the week commencing 4 January. There is some limited flexibility to stagger returns in these settings where it is necessary to allow special schools to prepare for testing to begin from 11 January.
  • All vulnerable children in secondary schools will have a place from 4th January
  • In some areas all children of primary age will receive a remote education – for a list of these areas see the DfE guidance. We are seeking clarification of whether this includes vulnerable children and children of key workers.
  • Wearing of masks will be required in school for children in year 7 onwards. We are seeking clarification of exceptions for children for whom this may be difficult or impossible and reasonable adjustments may be required.
  • We are also seeking clarification of whether it will be mandatory for vulnerable children (including those with an EHCP) to attend school. We have asked that the DfE make clear that an decision about attendance at school must take into account the particular needs of the child / young person and their family and be coproduced with them. Places should be available for all vulnerable children but attendance should not be mandatory (e.g. where it would increase a young person’s anxiety or perhaps lead to bullying).

Season’s greetings from the NNPCF steering group

As a year like no other draws to the close, we would like to take the opportunity to reflect over the work of forums and the NNPCF over the last few months.

Covid 19 remains a huge concern

The pace of 2020 has been relentless. We know that the demands on forums have been greater and more sustained than ever before. As we look back on the last term, it is the response to Covid 19 that again dominates our work. Since schools returned, we have participated in regular conversations with the Department for Education to relay the experiences of families with SEND to them. You can find our key messages in our updates posted in September, October and November:

Your back to school experiences – NNPCF Steering Group brief Minister Vicky Ford | NNPCF

NNPCF cochairs meet with new Department for Education Permanent Secretary | NNPCF

Sector leaders feedback to Minister Vicky Ford on what the latest lockdown means for children and young people with SEND | NNPCF

Despite this, the recovery from covid is only just starting and we have huge amounts of work to do to minimise the existing and future impacts on children and families with SEND.

But its not just Covid that we have been working on

Whilst Covid 19 has dominated our agenda again, the problems that were obvious in the SEND system before then pandemic have not gone away and have been exacerbated by Covid in many ways. we have also been engaged in several other major pieces of work. These include:

  • Engaged regularly with the SEND review to provide solutions to some of the most difficult issues in the SEND system. Look out for an NNPCF webinar on this in the new year.
  • NNPCF regions and local forums have supported the NHSE Learning Disability and /or Autism team with their regional roll out of the Key working pilots
  • NNPCF regions have also been invited to work with NHSE to support their work on Tier 4 admissions avoidance for children.
  • We submitted evidence to and appeared before the Education Parliamentary Select Committee on home education. Education Committee Inquiry into Home Education | NNPCF
  • And most recently, we responded to the call for evidence from the Work and Pensions Parliamentary Select Committee on the disability employment gap.

As ever, we could not have done this without you – it was your responses to surveys on Home Education and the Disability Employment Gap that allowed us to submit such strong responses to the parliamentary select committees and your regional and local networks that made the work with NHSE possible.

Another very different conference

And in amongst all of this we managed to put on a very different conference with our partners from Contact. With great keynotes from Professor Russell Viner the president of the Royal College of Paediatrics and Child Health, Sue North and Ray James the Learning Disability and Autism leads from NHSE and messages from not one, but two Ministers, our conference was a busy week. Moreover, there were great sessions on topics chosen by you on mental health, running a forum and supported employment. The school exclusions team were hugely impressed with the feedback from members at their workshop and plan to meet with forums again in the Spring when they will be revising exclusions guidance.

1000 members attended our sessions as they were broadcast and we know that many more of you will watch them back over the coming weeks from the conference website. Contact & NNPCF first virtual national parent carer forums’ conference 2020 | Contact

Looking forward

So, it is fair to say that 2020 has been an incredible year – a year of hardship and loss but also one in which parent carer forums have shown their resilience, creativity and value time and time again. During the response to Covid 19 that eviscerated so many of the services that SEND families rely upon, forums have risen to the challenge and supported and represented their communities. The intelligence you have provided us has enabled the NNPCF to make sure that the lived experience of our children is heard by leaders across regional and national government and the NHS.

Next year will bring its own share of issues and opportunities. Despite all of your efforts, we know that the prospects for our children are more difficult than ever. We are already looking ahead to making sure that the voice of parent carers is represented in the following priority areas:

Yet again, we will rely upon your knowledge, experience and wisdom as we undertake this work.

It is with this in mind that we say thank you for all of your efforts this year and wish you a very happy holiday season. Please make sure that you take time off over the break, you have all earnt it.

We will; see you in the new year refreshed and ready to carry on our crucial work.

The NNPCF Steering group


January Schools opening guidance – some points to note for special needs pupils

17 December 2020

See government guidance Schools and childcare settings: return in January 2021 – GOV.UK (

Today the government announced that the physical return to school in January for secondary school pupils will be staggered from the 4th of January to the 11th of January. Education will be provided remotely during this period.

All students in primary, special and alternative provision schools and colleges will return at their usual start of term.

Students in exam year groups, vulnerable children and children of critical workers will all attend school or college in person from the start of term. The definition of “vulnerable” for these purposes includes children with EHCPs. Unlike in the first lockdown, the availability of a school place will not be dependent upon a risk assessment for vulnerable pupils. All vulnerable pupils will be able to attend school.

We have asked for clarification of attendance expectations for vulnerable children in year groups that are out of school for this week – we have requested that in these cases parents be allowed to make a choice based on the needs of the family and the child as to whether their vulnerable child attends school or not.

(Please note that this is different to the definition of “clinically extremely vulnerable” for shielding purposes)

Lateral flow Covid 19 testing will be rolled out to staff in secondary schools and secondary age pupils (including those in specialist and AP settings).

Testing will not be mandatory and parental permission will be required. Students who receive positive test results will be asked to retest in 3 days and will be required to self-isolate in line with existing guidance

If a child is unable or unwilling to take a test, this will not impact their return to school with other pupils.


Education Committee Inquiry into Home Education

In October 2020 the NNPCF started collecting evidence to submit to the Education Committee for their inquiry into Elective Home Education. The inquiry will seek to understand the extent to which current arrangements provide sufficient support for home educated children to access efficient, full-time and suitable education, and establish what further measures may be necessary in order to facilitate this.

To view the NNPCF’s submission, it has been published on the committee’s website


Sector leaders feedback to Minister Vicky Ford on what the latest lockdown means for children and young people with SEND

On 12 November, NNPCF co-chairs Tina Emery and Mrunal Sisodia joined a small group of leaders from the SEND sector to brief the Children and Families Minister on the experience of families in the latest Covid 19 lockdown.

In preparation for the meeting, the NNPCF steering group prepared a briefing paper which was shared with leaders across government and the NHSE. You can fine a copy of our briefing here:

In our meeting we raised the following points:

  • The impact on services of children being labelled as clinically extremely vulnerable, especially young people over the age of 18 with Down’s syndrome
  • The importance of respite care
  • Confusion and anxiety faced by many families around shielding and contact with family members and carers
  • The huge variation in the experiences of children and young people in schools including those accessing remote education. We particularly emphasised regional differences between those areas with high infection rates where there has already been extensive disruption.

We also recognised that many of the lessons from the first nationwide lockdown have been learnt with many essential exemptions and reasonable adjustments incorporated into the guidance from the beginning.

The group also touched on the ongoing SEND review. The Minister has asked for further briefings with the NNPCF co-chairs on this subject and we will keep you up to date.


Aerosol Generating Procedures Guidance Update

New guidance on Aerosol Generating Procedures has been released by the government. It is incorporated into the Safe Working in Education, Childcare and Children’s Social Care document

The NNPCF has been raising the need for this guidance as a matter of urgency since the start of term (see”