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:
how vital it is to recognise the value of early intervention and the early identification of needs,
that behavioural and uniform policies, and the way they are implemented, often has a disproportionate impact on our children
the value of good inclusive school cultures
the ordinarily available offers that some schools already implement
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.
Sarah Clarke appointed NNPCF Co-Chair as Mrunal Sisodia steps down
We are delighted to announce that Sarah Clarke, steering group member for the South East, has been elected as NNPCF Co-Chair by the board at a meeting on Tuesday 25 April. Sarah has served on the steering group for the last three years.
This means that after seven years our co chair, Mrunal Sisodia is stepping down from his role as NNPCF Co-Chair and East of England Steering Group member. Mrunal has been on the steering group since July 2016 and has served two full terms. He will be stepping own from both roles at the end of July.
Until then, he will be working with Sarah and Tina Emery, joint Co-Chair, to ensure a clear hand over of responsibilities.
The NNPCF will be contacting the East of England region to recruit a new regional steering group member later this week.
On her appointment Sarah said,
“It is a such an honour to have the opportunity to represent our families as the Co-Chair of the NNPCF. Mrunal and Tina made an amazing team and I hope that Tina and I will have that same strength. I am grateful that we have a network, of wonderful, committed parent carer forums, who never cease to inspire me with the work that they do. The NNPCF also has a dedicated Steering Group and Management Team whose support for my appointment has been very touching and I can’t wait to get started.”
On stepping down Mrunal stated,
“I have very mixed feelings about stepping down from the NNPCF steering group. On one hand it has been such a pleasure and a privilege working with such a passionate, committed and positive group of people and second to being a dad, I suspect this will be the most important role I ever have. On the other hand, I know that after serving my two terms, seven years on the NNPCF steering group it is time for me to move on – the organisation will continue to grow and do even greater work without me.
On that note, I am so pleased that at yesterday’s NNPCF steering group meeting, we elected Sarah to take over the post of Co-Chair from August. I have worked with Sarah for the last three years and I have every confidence that she will move the NNPCF onwards building on the work done by all the steering group members and cochairs that have preceded her.
I will be working with Sarah and the NNPCF steering group and management team over the next three months to ensure a smooth handover and I know that I won’t be missed.”
Co-Chair Tina Emery added,
“I have had the absolute pleasure of working with Mrunal since 2017. He has inspired and taught the team loads over his tenure, offering his insights into the political world like no other.
Whilst he says he won’t be missed, he will.
When you take on the role of Co-Chair, you worry that you will leave the NNPCF in a worse place than where you started, Mrunal you need not have worried. I am in awe of what we have achieved together as a team, we now have a strong steering group and management teams and you were the driver of that change. We as an organisation are more independent than ever and we thank you for having that vision and drawing the team together to start that journey. We are definitely in a better place now.
Your new role in the East of England Ambulance service NHS Trust are really lucky to have your vision and your drive and we will wish you well.
I am really pleased that Sarah will be joining us as the new Co-Chair, she has experience in the steering group. Together with forums, Steering group and management team, we will strive forward with the coproduction message, working with partners across all agencies.”
We will be starting the process to replace Mrunal as the East of England steering group member ASAP.
Dynamic support register and Care (Education) and Treatment Review
NHS England has a new policy to help people with learning difficulties and autism get the right support for their mental health at home instead of in hospital which will be implemented from 1st May 2023.
Dynamic support registers DSRs – Local areas must create a list of people with learning difficulties and or autism who are at risk of needing mental health hospital care, to try an ensure they receive appropriate care and reduce the need for an admission for hospital. This list is called the dynamic support register (DSRs). The DSR should be organised in such a way that adults, children, and young people can be identified when their health and care needs are increasing or complex, and may require a multi-agency response, monitoring and prioritisation for extra support.
Note: the term “At Risk of Admission Register” was originally used, this term continues to be used in some areas. Similarly, the Dynamic Support Register is also known in some local areas as a Dynamic Support Database (DSD)
Forums may wish to read the core standards for dynamic support registers, which also includes minimum requirements on standards and datasets. There is also a section on carer contingency planning for unpaid carers which may be of interest to forum members.
Care (Education) and Treatment reviews C(E)TRs – A C(E)TR is a person-cantered review to ensure the care (education) and treatment and support needs of the individual person and their family are met, and that barriers to progress and/or discharge are challenged and overcome. All autistic children and young people and those with a learning disability are required to have a community C(E)TR if they have been admitted to or are considered to be at risk of admission to a mental health hospital.
There is an increased focus on advocacy for the child or young person, physical health, quality of life, as well as looking at participation in meaningful activity.
The NNPCF are working with NHSE to ensure that parent carer forums are engaged in the implementation of the new policies including a webinar for PCFs to explain the changes on 8th March. Details of how to sign up will be released shortly.
Mental health issues affecting a pupil’s attendance: guidance for schools
Integrated Care Systems – Public Accounts Committee Report
The Public Accounts Committee have published its response to its inquiry into Integrated Care Systems.
SEND and Alternative provision Green Paper
The NNPCF is awaiting the release of the SEND improvement plan which is the Department of Education’s response to the SEND and AP green paper consultation paper, which we believe is due to come out before March.
The DofE will be coming to our conference on 28 February to lead an interactive co-production session on the next steps of the AP and SEND improvement plan. We would really like to encourage forums to come to our conference to be part of these vital discussions.
Details of the NNPCF conference can be found on ourwebsite.
There is little detail or content in this paper about the SEND social care system – the Department for Education has indicated that the SEND and Alternative Provision Improvement plan which they intend to publish shortly will aim to align the two systems. However, some of the key themes that the NNPCF raised are explicitly picked up in the strategy, namely:
The call for a more joined us system across education health and care
The need for earlier intervention
But some of the more specific things that we asked for in the independent review are not picked up:
A call for a “support not safeguarding” for the majority of SEND families
The quality of social care input into EHCPs and a recognition that too often this is non-existent.
A huge variation in consistency and standards across the country
In March, the NPPCF will be engaging with forums to help formulate our response to the strategy; in particular our response to question of the consultation “What more can be done by government, local authorities and service providers to make sure that disabled children and young people can access the right type of help and support? “
Details of how to be involved with this will be included in our March consultation briefing. The NNPCF response as well as further details for forums are available to read on ourwebsite.
Census Data on Carers
The Office of National Statistics has published data on Unpaid Care in the UK. Their data includes anyone aged 5+ who indicated they provided unpaid care in the 2021 census. They found regional variability in number of hours of unpaid care given: the local authority with the highest proportion of unpaid carers was found to be St. Helens; whereas the North East was found to be the region with the largest proportion of unpaid carers.
Children’s and Young People’s Mental Health Trailblazer programme
The National Institute for Health and Care Research (NHIR) has published the final report from the early evaluation of Children and Young People’s Mental Health Trailblazer programme. The trailblazer programme, led by the Department of Health and Social Care, Department of Education and NHS England, was launched in 2018. The programme saw the creation of mental health support teams and training education mental health practitioners working directly in schools.
The report can be downloaded here and NIHR have published an infographic with a summary of the key findings.
Reports on location
The Child of the North All Party Parliamentary Group has issued a report highlighting areas where children and families in the north may have a different lived experience of parenting a children or young person with a disability.
The Coastal Communities Alliance have published theirreport highlighting challenges for disabled people in employment in these regions as well as higher levels of disability and long-term sickness.
NHS England has a new policy to help people with learning difficulties and autism get the right support for their mental health at home instead of in hospital which will be implemented from…
At our AGM on 31 January, we asked forums to help co-produce our priorities and strategic work for the upcoming year. We really value the input of parent carer forums in shaping the future for the NNPCF.
If you missed the AGM you can fill in our poll to help us shape our work over the next year here.
Poll closes 14 February
Major Conditions Strategy and Mental Health
Steven Barclay (Secretary of State for Health and Social Care) has announced the development of a Major Conditions strategy which will combine mental health policy with a broader strategy including other major conditions. It appears that this will replace the proposed 10 year Mental Health Plan and Health Disparities Paper.
The NNPCF is considering its response to this announcement and would like to hear from forums on this issue.
Forum leads are invited to fill in our forms survey here.
The NNPCF is also looking for case studies from individual members on mental health in children and young people with special educational needs and disabilities which can be completed here.
Prevention in Health and Social Care
The Health and Social Care committee is launching a major new inquiry into prevention in health and social care. At this stage of the inquiry, the committee are looking to hear from organisations who are interested in preventative healthcare.
The NNPCF will be submitting a response highlighting the need for therapies and early intervention, as well the importance of early intervention for mental health.
The committee is looking to find out
why these issues are important in preventative healthcare
why this area would benefit from scrutiny
why the government needs to take action in this area
The NNPCF already has several case studies on mental health but we would love some more to help inform our response. Individual parent carers can fill in the case study here.
Additionally, local forums can contact the NNPCF by emailing Claire Fisher at consultation@nnpcf.org.uk.
The NNPCF will be submitting a response representing the needs of children and young people with SEND including issues such as school transport, tribunal waiting times and schools not meeting needs.
The committee is looking to find out:
the factors causing persistent and severe absence among pupils with SEND and those in alternative provisions
how schools and families can be better supported to improve attendance, and how this affects pupils and families who are clinically vulnerable to covid-19
the impact of the department of education’s proposed reforms to improve attendance
the impact of breakfast clubs and free school meals on improving attendance for disadvantaged pupils
the role of Holiday Activities and Food programme and other after school and holiday clubs, such as sports, in improving attendance and engagement with school.
The NNPCF already has several case studies on attendance but we would love some more to help inform our response. Individual parent carers can fill in the case study here.
In May 2021 the Public Accounts Committee reported concerns about the catch up offer and the scale of hidden harm from the school closures during the pandemic including for children with special educational needs and disabilities. They stated “Children with special educational needs and disabilities found remote learning especially difficult, and some lost access to specialist support and equipment, increasing risks to their health and welfare.”
The Public Accounts committee will be questioning senior officials at the Department of Education and are running a call for evidence on how the department is supporting education recovery in schools following the COVID-19 pandemic, including:
whether it’s managing the programme for education recovery in schools in an effective way;
if it’s achieving value for money from the National Tutoring Programme;
and if it’s is achieving value for money from the other funding it has provided to support education recovery in schools.
Individual members and local forums can directly respond to this call for evidence at Education Recovery in Schools.
Closing date 27 February 2023
Energy Bills Support
Following on from the work done by the National Audit Office on Energy Bill Support, the Public Accounts Committee will question senior officials at the Department for Business, Energy and Industrial Strategy and the Treasury on the energy price scheme. The Call for Evidence covers many areas, including:
the schemes’ design and operation in practice
the options the government is looking at for future schemes
Individual members and local forums can respond to this call for evidence at Energy Bills Support.
Closing date 6pm 19 February 2023
UK Covid-19 Inquiry
The UK Covid-19 Inquiry is inviting individuals to share their experiences of the pandemic with them here. Module 3 on healthcare is currently open, and the NNPCF will be submitting evidence when invited to do so.
T Levels
The Department of Education (DofE) is seeking views on the content of future qualifications to support progression to T levels and are inviting feedback. The deadline for submitting responses if Thursday 6 April 2023.
As part of the review of post-16 qualifications at level 2 and below, the DofE intends to consider for funding level 2 qualifications designed to support progression to T levels; approved qualifications would be available for first teaching from 2026. These qualifications could be taken by young people as part of a broader T Level Transition Programme (TLTP), or by adults outside of a TLTP.
The DofE intends that the content of these qualifications will be based on the national technical outcomes (NTOs) developed for the T Level Transition Programme. The DofE are seeking views on how the NTOs should be used in developing these qualifications. Full details about the proposals and how to provide feedback can be found here.
Further information on the T Level Transition Programme and the national technical outcomes for the first eleven T Level routes, you can access this here.
We are looking at different ways of presenting information, below you can follow the link to our consultation sway.
The agenda for our face to face conference in Bristol on 28 February has now been confirmed.
The conference opens at 10.30am, with the event starting at 11am
There will be light refreshments available on arrival.
11.00-11.20 Welcome and introductions
11.20-12.00 Keynote from Ofsted – SEND and inspections – the new local area inspection framework and Ofsted’s annual report
12.00-12.40 Keynote from CoChairs – What next for SEND? Shaping a strategy during a crisis.
12.40-14.00 Lunch- a choice of hot dishes will be available
14.00-14.30 Address from Claire Coutinho, Minister for Children, Families, and Wellbeing
14.30-15.45 Session led by the DfE:
Delivery of the SEND and AP improvement plan
An interactive co-production session led by the Department for Education, looking for thoughts on the next steps of the SEND and AP implementation improvement plan being developed in response to the SEND AP Green Paper
15.45-16.00 Break-refreshments will be available
16.00-16.45 The Q&A Panel will include:
Alison Ismail, Director for SEND and Alternative Provision at the Department for Education
Tina Pagett, HMI, further education and skills from Ofsted
Phil Brayshaw, Acting Head of Children and Young People, National Learning Disability and Autism Programme NHS England
Amanda Allard, Deputy Director for Health, Council for Disabled Children.
When the conference finishes, light refreshments will be available in the market place area.
Attendees can then return to their accommodation to freshen up and have some food in preparation for the evening social event, which starts at 7.30pm.
During the evening, there will be a bar, where you can buy soft and alcoholic drinks as well as a disco and some complementary canapés
If you are unable to attend the conference, a live stream will be available to watch. You can sign up for the live streaming here.https://us06web.zoom.us/j/83666170897
Shortly after the conference , the live sessions will be available to watch on YouTube- details will be shared after the event.
Find out more and book your place by completing the booking form available on Contact’s website
The NNPCF has recently submitted its response to the Hewitt review on Integrated Care Systems (ICSs).
The review asked questions around policy, targets, data and performance monitoring. The NNPCF is keen to ensure children and young people with special educational needs are visible in the health system, and our response to the Hewitt reviews reflected key areas raised by our membership.
The NPPCF is concerned to hear from many forums that there has been less engagement with health across the country since the introduction of Integrated Care Boards. Whilst we were able to share some examples of good practice of co-production with the Hewitt Review, many forums report being informed of local health plans rather than active engagement and co-production. The NNPCF highlighted the benefits of co-production for health systems and how performance improvement can be supported by bringing the lived experience of children and young people with special educational needs and disabilities to decision makers.
At present very few Parent Carer Forums are reporting to the NNCPF that their local IBC is set up in a way to reduce inequalities for children and young people with special educational needs and disabilities. The NNPCF reported to the Hewitt review that it is seeing little data to suggest that children are a priority for ICBS despite specific provisions being required. The NNPCF suggested national priorities focused on CYP as well as ensuring ICBs have the required provisions in place for CYP could help increase the visibility of CYP in the health system.
The NNPCF also fed back to the review feedback it has had from forums on other aspects relevant to the scope of the review. The NNPCF will continue to work with the Hewitt review and health services to ensure the needs of children and young people with special educational needs and disabilities and the lived experience of their families is represented to those making decisions.
Our joint virtual conference with Contact has now been finalised
The details and booking links can be found below:
Tuesday 31 January
10am – 10.30am Introduction to the virtual conference
Join your conference hosts Tina Emery and Mrunal Sisodia from the NNPCF and Carolyn Deveney from Contact as they introduce this year’s joint NNPCF and Contact conference.
They will provide an overview the presentations, workshops and coproduction opportunities over the next few days and provide a lead into the face to face conference in Bristol on the 28 February
A chance to get together with peers to share what works and what might challenge us when it comes to Equality Diversity and Inclusion (EDI). This session focuses on interactive discussion, space to engage, challenging our own biases, understanding who is around us, and finding our ‘blind spots’.
Contact is offering all forums EDI training this year as part of the core support offer at the DfE’s request. We hope that by the end of the year all forums will have participated in the training.
Numbers for this session will be restricted, however, the session will be run another five times during the next few months.
1pm – 2pm Planning the recovery in children’s community services
The NNPCF has heard throughout the year of the challenges faced by families accessing community based services including SALT, ASD / ADHD services and paediatricians in the wake of the covid 19 pandemic.
NHS England has created a new recovery team to address these issues around children’s services who have agreed to speak to NNPCF membership about what NHS data is telling them and the steps they are exploring to tackle the problems.
There will also be an opportunity to coproduce the latest thinking on what the model for recovery might look like.
Join the NNPCF steering group to help coproduce the business plan for the coming year and shape our longer term strategy.
This session will include:
Review the first six months of our operation as a Community Interest Company from October 2021 to March 2022
take a look at what has happened in the world of SEND since April 2022 and put it into the broader context of political turmoil, cost of living and the NHS.
coproduce our priorities for the coming year 2023-24 that will form the basis of our business plan and longer term strategy.
IPSEA, the SEND legal support charity, will lead a session that outlines the major pieces of legislation that protect children and young people with SEND including the Children and Families Act, Equalities Act, Chronically Sick and Disabled persons Act. They will cover the tools that families (and forums) have at their disposal to seek redress if they have concerns.
IPSEA will also cover the services and support that they offer and how forums can seek further help and training.
1pm 2.30 pm Delivering Better Value for SEND (DBVS)
This interactive session will provide an opportunity for parents and carers to understand the DBV programme, ask questions, and contribute to how it is set up for success. We will explore:
What the DBV in SEND programme is and how it sits alongside other DfE activities
The progress made and findings to date
How to best connect parent-carers into the work of the programme
10am – 11.00 am Developing the Parent Carer Forum handbook with Contact
Last year, Contact asked what forums wanted in the new forum handbook – In this session they will share the survey results and discuss how to take things forward to develop a handbook that works for all parent carer forums
A reminder that this year’s annual conference will be a two part event.
Based on your feedback, we will be holding series of virtual workshops between 28 January and 1 of February 2023 and there will be a face to face event on 28 February at the Double Tree Hilton, Bristol City centre, Redcliffe Way, Bristol BS1 6NJ.
You told us a number of topics that you would like workshops on and we are currently working with the Department for Education, NHS, Ofsted / CQC, and partners in the charity sector to plan these for the conference.
For the face to face conference, registration will open at 10.30 am with the event starting at 11am. There will be refreshments available throughout the day and lunch will be provided before the formal event finishes at 5pm.
This will be followed by an evening social event starting at 7.30pm. This will give us an informal opportunity to socialise and catch up with other forums, something we haven’t been able to do since before the covid pandemic.
To register for the event, please complete the form which can be found via the following link on Contact’s website: Conference-FAQs-2022-23.pdf (contact.org.uk) This will also give you further information about the event.
We can already confirm that we have Ofsted, a Ministerial address and senior members of the NHS England team attending the conference on the 28 February. As well as key note speeches, there will be a Q&A panel and we are working with our partners to host a large scale coproduction session to shape a major policy area.
We will published both agendas, for the virtual and the Bristol conference, early in the new year.
We’re proud to sign a new open letter to the Government on the specialist workforce 📬
We’ve signed the letter alongside over 110 other charities, royal colleges, professional bodies, professional associations, trade unions, parents and carers and others who want the very best for children and young people, including those with special educational needs and disabilities (SEND).
A wide range of specialist professionals play a huge role in the development of many young people – including by providing direct support, identifying needs early, and supporting teachers to develop their knowledge and skills.
But while the need for specialists is increasing, insufficient numbers are being trained to meet demand. Many are failing to be retained, and many are leaving the public sector altogether.
This must change.
We are calling on the Government to use their response to the SEND Review to address gaps in the specialist workforce and ensure there will be sufficient specialist professionals to help children – now and in the future.
The NNPCF ‘s consultation response has been submitted today 22 July.
Our response has been extensively coproduced with parent carers:
We ran a survey for all parents which received nearly 1300 responses – parents gave us a very strong steer on the key issues. We will publish the results of this survey in full.
We have hosted many regional events over the last 15 weeks with parent carer forums – some with the DfE team in attendance and some exclusively for parent carer forums.
We focussed our responses on those areas that will directly impact service delivery to families because this was where we got the most and the strongest responses from parent carers. We touch upon those areas that deal more with the structure.
In addition to this formal consultation response, we have had regular dialogue with the DfE about the Green Paper proposals where we have continued to make the key points in our consultation response:
NNPCF co-chairs, Tina Emery and Mrunal Sisodia continue to be members of the SEND review steering group which has met twice during the consultation period.
Senior civil servants from the DfE attended the webinar we held on the 11 July (see link above)
We have meetings scheduled over the coming weeks with the DfE to further analyse the results of our survey
We will continue to update you on the progress of the Green Paper as we have more information.
