National Network of Parent Carer Forums C.I.CEvery year we seem to start our annual report with ‘What a year!’ and this year is no exception.
We have started this year with a team like no other. We are now getting into the groove of what it’s like being a community interest company and we are grateful to our members, our steering group, and our management team, for getting us to the point we are now.
Jo Harrison, represents the NNPCF as a member of the Health Policy Influencing Group (HPIG), which is hosted by the National Children’s Bureau. HPIG is a is a strong, independent voice, which advocates for improvements to the health of babies, children and young people. As a group of influential organisations, charities and Royal Colleges, HPIGs’s aim is to look to ensure that the particular and unique health needs of babies, children and young people, with and without SEND are a focus for the health system.
This report provides a snapshot of how the newly formed Integrated Care Systems (ICSs) are enacting their duties for strategic planning as outlined in the Health and Care Act 2022.
The report specifically looks at the requirements for Integrated Care Partnerships (ICPs) to produce an integrated care strategy and for Integrated Care Boards (ICBs) to produce a five-year joint forward plan (JFP). Members of the HPIG reviewed approximately 74% of plans to determine the extent to which they have reflected the needs (SEND and NON-SEND) of babies, children and young people within them.
Whilst invited to include our logo within the report, we were unable to for a number of reasons, which we confirmed to HPIG, in order to further strengthen our working relationship.
The reasons we provided were:
We are please to report that our challenge to the report was met with the spirit it was intended and offered assurances that reflecting the views of CYP with SEND remains very important to National Children’s Bureau.
We have been asked to share the following information from the SEND Dispute Resolution Steering Group.
The College of Mediators (COM) and the Civil Mediation Council (CMC) hold a joint register of accredited SEND mediators.
This comes about as a result of standards specific to SEND mediation practice that were drawn up by a panel of providers in 2018. In a changing mediation environment and in the context of governmental change to SEND provision, these standards are now currently being reviewed with a view to ensuring that SEND mediation continues to be delivered to a consistently high standard.
When the standards were originally drawn up the expectation was that they would be applicable to experienced mediators working in other fields, who might extend their practice to SEND disputes.
These new standards will have a wider ranging application, extending to those who are newly trained as mediators and who may, for example, be moving into mediation from a background in SEND and /or education.
The standards will apply to those who wish to apply to join the register. Those SEND mediators who are already on the register will not need to re-apply, but will need to demonstrate the annual CPD and practice requirements going forward.
As part of this review therefore, the standards have been revised and are now being circulated among mediators and other professionals working in the SEND context.
You can read the revised standards below:
We welcome your views on the standards document generally and in particular we would value your responses to the questions outlined in the following consultation: Consultation re SEND Mediation Standards (smartsurvey.co.uk)
On 6th November 2023, our co chairs met with the Permanent Secretary at the Department for Education, Susan Acland-Hood.
Susan is the most senior civil servant within the Department for Education ( DfE) .
This was the NNPCF’s first meeting with Susan Acland-Hood, which went very well and provided an opportunity to raise the profile of the work that forums do, along with the issues and concerns of parent carers.
The discussion focused on:
Susan was encouraging about the challenge parent carers and forums provide and ensured us that they are working with colleagues in the DWP, though we asked that they should be present at the SENDAP implementation board.
We are pleased about the supported internship pilot that doesn’t require an EHCp, as this will help a lot of families access supported internships in the future.
Susan agreed that better communications with families across all the programmes that are currently underway would be a good idea. Concerns raised around less EHCp’s or the Safety Valve Programme are due to poor communications, she said that her team would look at this moving forward.
An invitation to attend our NNPCF/Contact National Conference in February 2024 was extended to Susan and her team and they will ensure that DfE is well represented.
We have received the following communication from the Association of Educational Psychologists.
EPs will be taking industrial action (striking) this winter.
Why?
Every year, tens of thousands of children and young people and their families are helped by an educational psychologist (EP).
EPs work with education professionals in nurseries, schools and other settings and with colleagues in youth justice and social care to help children overcome mental health issues like self-harm and anxiety and barriers to learning such as attention difficulties and dyslexia.
EPs also work with children and young people directly, offering therapeutic support for those who can’t find help through CAMHS and specialist support for care experienced children and their
carers.
EPs provide critical incident support when there has been a traumatic event in the community – it was EPs who were there after the Manchester Arena bombing and the Grenfell Tower fire.
EPs support young people up to the age of 25 to manage college, work experience, even independent or supported living.
And EPs help thousands of families with parenting advice and training as well as providing statutory assessments for Education, Health and Care Plans (EHCPs) to unlock support for children in school.
Despite the vital services and support provided by EPs, local authorities in England and Wales are not investing in the profession and are now facing widespread recruitment and retention problems.
Over the past 13 years, EPs’ pay has fallen by 17% compared to where pay should have been, had it kept up with inflation.
To afford their bills, EPs are moving to the private sector or leaving the profession altogether – leaving nearly 9 in 10 (88%) local authorities struggling to recruit EPs.
Nearly every (96%) local authority says the shortages are affecting children and young people.
Rocketing EP workload means children and young people are waiting far too long to be seen by a professional – or worse, do not get to see an EP at all.
Department for Education (DfE) figures from June 2023 show almost half of EHCPs in England are issued late – lengthening children and young people’s distress and leading to an increased need for a plan.
Our profession is in crisis. EPs are trained over three years to doctoral level and are qualified to take on high levels of responsibility, but they’re working unacceptable hours to help children, young people and their families to not only survive but thrive in the education system. They are burning out.
Many EPs will be taking industrial action in 135 local authorities in England and Wales – to protect their colleagues, their services and, most importantly, to protect your children.
In the short term, the industrial action may mean further delays in seeing an EP. But EPs are taking action with a view to the long term – to make sure those waits become a thing of the past so that in the future your children will have access to the specialist support that EPs offer, when they need it.
Academies regulatory and commissioning review
The NNPCF have recently been involved in the development of the DfE Commissioning Guidance in the academies regulatory and commissioning review which is available to read below
Commissioning High-Quality Trusts
The following publication explains how the Department for Education takes decisions about the creation, consolidation and growth of academy trusts
In December 2022, we informed you of a new programme, funded by Health Education England called the National Autism Peer Education Programme. The lead organisation for this programme was announced as the National Autistic Society (NAS) and whilst we informed you of the programme, it was in very early development, and we wanted to update you on where the programme is now.
The National Autism Peer Education Programme is now called Autism Central, it is a peer education programme for parents and carers of autistic people. The aim is to offer high-quality and easily accessible learning, information and guidance developed by autistic people, parents and carers and delivered via regional hubs across England, alongside a dedicated website.
The Autism Central website hosts details about each regional hub, information resources developed for the programme and signposts to useful external resources.
Training and support delivered via 7 Regional Hubs across England:
Including online and in-person training, group support and 1:1 mentoring
How far along is the project?
The organisations that have been contracted to run each regional hub were appointed in early 2023 via a tending process and are now in the recruitment and training phase of development. Hubs have started offering online training and information events. Phase 1 of the programme will begin in Autumn 2023 and this will include stakeholder engagement with local and national organisations. Phase 2 will begin in early 2024.
How are NNPCF involved?
Our role is a small but important one in ensuring that the programme is driven by lived experience and the needs of families. Two members of the NNPCF Steering Group were appointed as members of the Autism Central Governance Steering Group (GSG) and Expert Reference Group (ERG) in March 2023. A Compliance & Monitoring Sub-group (CMSG) of the GSG was formed in June 2023 and NNPCF have a representative in this group also.
Our role in each group:
Governance Steering Group (GSG) – guide the strategic direction of the project, manage risks, have oversight of performance and impact and financial sustainability.
Expert Reference Group (ERG) – support the development of information and training resources.
Compliance & Monitoring Sub-group (CMSG) – Monitor Quality Assurance and Risk across programme delivery including quality and improvement, safeguarding and data protection.
The regional hub tendering and contract award process had been completed prior to the appointment of a permanent NNPCF member to the GSG. As a member of the CMSG, NNPCF will have oversight of performance and delivery of the project by the regional hub providers.
Advisory and Governance Partners
Autistica
Ambitious about Autism
The Autism Education Trust (AET)
The Autism Alliance
Contact
Great Minds Together
National Network of Parent Carer Forums (NNCPF)
British Institute of Learning Disabilities (BILD)
Delivery Partners
National Autistic Society (Autism Central Programme Manager)
Aspens – South East Regional Hub Provider Aspens | Autism Central
Bristol Autism Support – South West Regional Hub Provider Bristol Autism Support | Autism Central
Contact and Ambitious About Autism – London Regional Hub Providers Contact and Ambitious about Autism (London) | Autism Central
Contact and Ambitious About Autism – Midlands Regional Hub Providers Contact and Ambitious about Autism (Midlands) | Autism Central
Daisy Chain – North East and Yorkshire Regional Hub Provider Daisy Chain Project | Autism Central
Essex County Council – East of England Regional Hub Provider Essex County Council | Autism Central
Great Minds Together – North West Regional Hub Provider Great Minds Together | Autism Central
If you want to contact the NNPCF about this programme, please email info@nnpcf.org.uk
On 31 Aug 2023 we learnt that a new minister for Children, Families and Wellbeing had been appointed, David Johnston OBE.
Co-chairs Tina Emery and Sarah Clarke had an introductory meeting with the minister on 5 September.
The meeting went very well, giving Tina and Sarah a chance to highlight the importance of parent carer forums as well as the value that coproduction brings when working with parent carers who have lived experience.
They spoke about various subjects which included:
The minister then asked our co-chairs to name one change that could make the biggest impact. This was a great opportunity to quote our school attendance case studies, where 81% of respondents had stated that the reason for their children not being able to attend school on a regular basis was, that their child’s needs were not being met. A further 89% of respondents felt if their school had recognised those needs and met them promptly it would have made a huge positive difference to their child’s life.
The meeting ending with an invitation for the new minister to attend a NNPCF steering group meeting, to meet with our parent carer forums from around the country, in their own regions, as well as an open invite to attend our next conference.
We look forward to working with David Johnston OBE, the new Minister for Children, Families and Wellbeing.
Below you will find our introduction letter to the minister , and his reply.
On 5th September 2023, NNPCF co-chairs Tina Emery, and Sarah Clarke, took part in the Attendance Action Alliance meeting, chaired by Gillian Keegan MP, Secretary of State for Education.
At the start of this academic year, the alliance renewed its pledges at 10 Downing Street, to support children and young people to get back into school.
Whilst there has been some improvement across the board in the attendance figures, the alliance is keen to ensure this continues to improve.
The NNPCF has always advocated the difference between non-attendance and those who are unable to attend for other reasons. Our case studies have reported that SEND parent carers want their children and young people to have an education, but their SEND needs must also be acknowledged and subsequently met.
Along with the importance of being able to start the academic year successfully, which often proves very problematic for those with SEND. Details such us good and timely communication around school transport and the inevitable school year timetable changes can have a massive positive impact to the start of the term for our children.
To support understanding on mild illness and school attendance, Professor Chris Whitty, Chief Medical Officer, along with other health colleagues has written the following:
Letter to school leaders on mild illness and school attendance – GOV.UK (www.gov.uk)
For the last two years, at the start of the academic year, we have highlighted the need for a joined up supportive approach and not the punitive approach that, unfortunately, our children experience. In response to our requests, the DfE recently published a blog on what constitutes a reasonable adjustment.
The following information could be used by forums to help their local parent carers inform the schools that their children and young people attend to identify what reasonable adjustments are and how they can be used to help: What are reasonable adjustments and how do they help disabled pupils at school? – The Education Hub (blog.gov.uk)
The Department for Education (DfE) have published a revised statutory guidance for all local authorities on home to school travel for children of compulsory school age.
They have also published the following response to the public consultation on the guidance: https://www.gov.uk/government/publications/working-together-to-improve-school-attendance
Some of the changes to the guidance, specifically relate to children with SEN, disabilities and/or medical conditions, which have been highlighted by Contact’s school transport inquiry.
Aimed at schools, Working together to improve school attendance – GOV.UK (www.gov.uk) states “This report finds that children who miss one of the first few days of the new term for unauthorised reasons are much more likely to miss long periods of their schooling than their peers who attended those first few days. These children had a predicted overall absence of almost 45%, or 31 days across the term compared to children who missed days near the end of term with a predicted overall absence of 20-30%. This shows just how important it is that children are at school, ready to learn in the first days of the September term.”
A parental guide for school attendance will be published soon.
Regional Attendance Hubs are soon due to be launched. It is hoped they will enable schools to better support their pupils to get them back into school. Government to tackle post pandemic absence rates with new support – GOV.UK (www.gov.uk)
Let’s get ready for September | Children’s Commissioner for England (childrenscommissioner.gov.uk) (published July 2022)
Welcome to the Participation Summer update.
In June, our team came together, in person or online for our annual National Representative day, which this year was in London.
We started the day with a quick team building exercise, then our co chair, Tina Emery gave an update on the areas of work that the NNPCF are currently involved in.
Our Policy and Consultation lead, Claire Fisher, then asked what information the Nat Reps would find helpful to have to aid their roles on the different teams they are part of. She also spoke about adapting the Talking Points documents, which is usually shared on the website.
Melissa Chesman, our Communications lead, then spoke with the team about the best way of sharing what activities and meetings they are involved in with our wider parent carer community.
Over the last few months our Nat Reps have participated in a number of meetings including being a member on the judging panel of the Mental Health Awards, and then they attending the awards ceremony themselves (which was presented by author Michael Rosen). More information about the awards can be found here: https://www.rootofit.com/awards . They have also been involved in a large project to work to support our Policy and Consultation Lead. They analysed the 192 case studies previously shared by parents and carers where children and young people’s needs are not being met in school and don’t have EHCPs. We are currently working on how to best share this information.
We said farewell to Louise Engels,who was a new National Rep in the East Midlands, but sadly due to a change in the circumstances within her forum had to stand down from the role. However, we were able to welcome Dave Barnard from the London Region to the Nat Rep role, and we look forward to working more closely with him going forward.
The London Region now have a new Health Team and are already taking their first steps in identifying parent carer health priorities across London and improving coproduction across the region too.
They are currently looking for forum representatives in the North West region of London to join them.
Please email participation@nnpcf.org.uk if you would like more information!
We are always looking for more National Representatives from around the country. If you would like to find out more about the role, see here and please contact me via the above email address.
Have a wonderful summer!
Jacqui
Participation Lead for the NNPCF