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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

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Uncategorized

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.

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Department for Education DfE guidance Minister for children and families NNPCF work

Powers of the SEND tribunal to make non-binding recommendations extended

The government has confirmed that the single route redress national trial will end in August (it had been extended because of Covid 19). In line with the recommendations of the trial, the government has confirmed that the powers of the tribunal to make non-binding recommendations on health and social care will continue. Children and Families Minister Vicky Ford has written to members of the Single Route of Redress Steering Group to confirm this decision and thank them for their efforts. We attach a copy of the letter;

The NNPCF has worked extensively on this project as a member of the steering group and outside. We have consistently argued that the powers of the tribunal to make judgements on health and social care services was necessary and a positive step towards increased accountability and protecting the rights of children with SEND. We also maintain that the judgements on health and social care should be made binding.

You can find more on our work on this topic here NNPCF work to improve accountability in the SEND system – National Network of Parent Carer Forums C.I.C

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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.

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Contact for families with disabled children NNPCF work

NNPCF and Contact announced as strategic parent carer coproduction partners for CYP learning disability and autism team


In a joint bid, NNPCF and Contact have been awarded a three year contract to be the strategic partners for NHS England’s Children and Young People’s Learning Disability and Autism Team, focussing on parent carer coproduction.

This means that the NNPCF will be involved in key elements of the development, implementation and review of the NHS Long Term Plan in relation to children and young people with a learning disability or autism (LDA).

The contract covers areas such as:

  • The response to covid 19
  • Supporting regional and local parent carer forums to engage in the NHS Long Term Plan
  • Sharing information with parent carer forums about the long-term plan and providing feedback to the NHS LDA team on the lived experience of families
  • Attending key boards and decision making bodies.

We have already started this work. Find more:

This contract is limited to national work. We believe that the NHS should also fund regional and local PCFs. Decision making and monies around regional and local implementation are devolved to the NHS regions and we continue to have conversations with regional NHS leaders to secure funding for all PCF regions (currently only the South West is funded).

Find out more about what the NHS Long Term Plan says about learning disabilities and autism.

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Covid-19 NNPCF work Vaccination

NNPCF representations on the Covid 19 vaccination of children

The last few weeks have seen a lot of press and media comment on the subject of vaccination of children versus covid 19.

Advice to government on whether children should be vaccinated is being prepared by the Joint Committee on Vaccinations and Immunisations (JCVI). JCVI is an independent group that is not a part of the government and the NHS. Based on their advice, a government policy will be developed.

It is clear that Covid has little direct impact on children (see recent BBC article on UCL research Covid: Children’s extremely low risk confirmed by study – BBC News). This may suggest that they should not be vaccinated. In addition, there are ethical arguments about medicating someone that is for the benefit of someone else (i.e. the vaccination of children is primarily to protect more vulnerable older people from the spread of the virus) especially when they lack capacity to make that decision themselves (which is the case for children).

However, children are significantly indirectly impacted by the response to covid (e.g. needing to isolate). It is also clear that whilst the risk remains very small, some children are at increased risk from Covid such as those with severe neuro-disability and severe respiratory conditions. Many of these children will fall into the category of having SEND.

The NNPCF has been made the following representations on the subject of vaccinations:

1. If evidence suggests that vaccination of children is effective and safe, it should be made available to children who are at higher risk of severe illness

2. Any decision to give the vaccine must be coproduced with parent carers and children and young people. There should be no judgement or pressure to be vaccinated or not.

3. Reasonable adjustments should be made to enable children with SEND to access the vaccine where required.

For more on the impact of on children see the Royal College of Paediatrics and Child health website Message for paediatricians on children and young people and the COVID-19 vaccination programme | RCPCH

Also see the article in the Guardian by Professor Russell Viner who spoke at the joint NNPCF / Contact conference in December. Shall we vaccinate our children? We could start by asking them first | Russell Viner | The Guardian

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consultations NHS England

The Draft Core Capabilities Framework for the Transition of Young People into Adult Services in England-national consultation

Overview

The Framework articulates the core capabilities describing the knowledge, skills and behaviours required by all healthcare staff working with young people who are transitioning to adult services. Currently there is no national framework that addresses this need.

This Framework is part of a wider programme of work and will build upon and be complementary to previous and current work undertaken by NHS England and Improvement (NHSE/I) and the Burdett National Transition Nursing Network. It will support this ongoing work of the need for the successful transition of young people between children’s and adult services as identified by the NHS Long Term Plan.

The current draft capabilities have been developed by a national steering group of experts as well as young people and parents. We are going out to wider consultation on the capabilities themselves which will form the key part of the Framework document. The Framework will also describe the context and background. 

The development of a Core Capabilities Framework will provide the health sector with a starting point to identify education and training currently available, as well as identifying any gaps. In the future this will assist the application of a consistent approach to training for the successful transition of young people between children’s and adult services.  It will be applicable to both clinical and non-clinical staff across all levels of roles in the workforce.

Whether you are a healthcare member of staff, young person, parent or carer your views are very important to the development of the Framework and thank you for taking the time to complete this survey.

The survey will be live from Monday 12th July until Sunday 22nd August 2021.

Link to more information and the survey:

Children and Young Person’s (CYP) Transformation Programme Team

Medical DirectorateNHS England & NHS Improvement

www.england.nhs.uk

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NHS England NNPCF work Parent Carer Forums

Autism Schools Project

The Autism schools Project is being rolled out across the country over 2021/22 period. This project was one of the Children and Young People Accelerator Projects run in North Cumbria and the North East and is now going out to the rest of the country.

The Infographic accompanying the project, which highlights how parent carer forums can be involved, can be viewed here.

The full project report can be viewed here.

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local area inspections

Ofsted-CQC publish final report on interim visits

Ofsted and the Care Quality Commission have published their final report from their programme of interim visits to local areas.

In this report, they look at the history of SEND reforms and the impact that the pandemic has had on children and young people with SEND, and their families.

Amanda Spielman, HMCI, has also written a commentary to share more information about the plans for our new area SEND inspection framework.

Ofsted / CQC have produced three short videos which summarise the key information from the report and the commentary. You can access these via the links below:

· Nick Whittaker talks about the programme of visits to local areas conducted by Ofsted and the Care Quality Commission.

· Nick Whittaker talks about the issues arising during the pandemic for children and young people with SEND.

· Nick Whittaker and Lee Carey discuss joint area SEND inspections.

This report raises many of the themes and concerns that the NNPCF has identified before, during and for the recovery from the pandemic. IN particular, the role of parent carer forums in creating the better performing systems is recognised:

“The role of the parent–carer forum featured prominently in the most successful areas. In these, leaders had understood that co-production meant working with families as equal partners.”

The report also calls for the key changes in the SEND system that we have asked for in the SEND review. For example:

“What, then, needs to happen for this situation to improve? Clarity about who should provide what at a local level, greater coordination of services and clearer

accountability for all partners, all leading to more effective multi-agency working, are key.”

“The importance of the availability of good universal services to all children and young people with SEND across education, health and social care cannot be underestimated.”

For more information on our work with Ofsted and CQC see:

Ofsted announces plans for local area SEND inspections – National Network of Parent Carer Forums C.I.C (nnpcf.org.uk)

NNPCF work to improve accountability in the SEND system – National Network of Parent Carer Forums C.I.C

Talking-points-School-Inspection-v.2.pdf (nnpcf.org.uk)

Local Area Inspections (nnpcf.org.uk)

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NNPCF work Social Care

Josh MacAlister makes “The Case for Change” at joint NNPCF / Contact webinar

The independent review of children’s social care has published its case for change. You can find it here:

Home – The Independent Review of Children’s Social Care (independent-review.uk)

On Thursday 24th June at noon, Josh MacAlister, the independent chair of the review, will be joining an NNPCF and Contact webinar to talk about the case for change and what it means for children and young people with SEND.

You can sign up to the webinar here: Meeting Registration – Zoom

The NNPCF have been working with Josh and the review team to ensure that the issues most important to SEND families are included in the review.

Many of the issues we have raised with the review team are included for example:

· There is a recognition that families need support rather than “investigation”

· The inconsistency in classifying children with disabilities as Children in Need

· The lack of appropriate support for families with children with disabilities is noted

In addition, man y of the major themes that we have raised with the SEND review are also recognised in the report, for example:

· The need for a better definition of what early help and intervention (family support) is available

· The need for more multi-agency working

· The financial pressures on the children’s social care system

You can find out more about our work with the review team here: NNPCF input into children’s social care review – National Network of Parent Carer Forums C.I.C