Categories
NNPCF NNPCF Steering Group Parent Carer Forums

New Steering Group member for London

We are pleased to announce that Claire Richmond from the Richmond parent carer forum has been appointed to replace outgoing NNPCF board member Fazilla Amide.

Claire has worked successfully to establish the Richmond forum after a difficult period over the last few years and brings experience of building relationships, reaching consensus, and working across other local London boroughs to the role. Her background as a musician highlights her attention to detail and working as a team.

Of her appointment Claire said, “I’m delighted to be offered this opportunity to work with the NNPCF to support the amazing work of Parent Carer Forums in the London region.   The strength, commitment and resilience of this network has been an inspiration to me during my 3 years of running a local forum and I’m looking forward to promoting those voices to inform policy and decision making at a national level”

NNPCF co-chairs Tina Emery and Mrunal Sisodia said, “We are delighted to be welcoming Claire to the NNPCF board. Her application, her interview and her references all highlighted the very obvious strengths that she will bring to the team, and we are confident that she will do an excellent job representing the London region.”

At the same time, we are incredibly sad to be saying goodbye to Fazilla Amide who steps down from her role as NNPCF board member for London to go onto devote more time to her family and her important role at NHSE.

Fazilla Amide said, ”It’s genuinely been an absolute honour to be part of the NNPCF at a local, regional and national level.  The national and regional teams are so passionate to move our agenda forwards, it’s reassuring we are in such good hands! We’ve been on such a long journey and in this new economic environment, the focus and dedication of all our forums and individual parent/carers members is needed, more so than ever before. So, it’s not goodbye but “see you in a different guise!” I will continue our work within the NHS to raise the profile, our challenges, as well as the collaborative, creative and solution-focused nature of parent carers. I would also call on the DfE and the DHSC to review the sustainability and funding model for forums which is very much needed. 

I wish you all the best and also welcome Claire to her new role; Claire, you will be fab!”

NNPCF cochairs Mrunal Sisodia and Tina Emery stated, “Fazilla has been instrumental in the development of the NNPCF over the last few years. Her stamp is on every aspect of the organisation – the challenge she brought, the clear thinking and most importantly the rock solid values of championing SEND families in everything we do. This is without mentioning Fazilla’s professional skills which were so important as set up as a community interest company. She will be sorely missed but she goes with our best wishes and pride in another NNPCF alumni taking an important role in the world of SEND.”

Categories
Department for Education NNPCF SEND Review

Department for Education update

New Minister with responsibilities for SEND announced

The new government continues to formalise ministerial responsibilities and last week, Kelly Tolhurst was announced as the new Minister for Schools and Childhood with responsibility for SEND. Minister Tolhurst is the second most senior minister in the Department for Education behind the Secretary of State Kit Malthouse.

NNPCF co-chairs Tina Emery and Mrunal Sisodia have written to Minister Tolhurst to introduce the NNPCF and ask for a meeting.

What next for the SEND Green Paper

The consultation period for the SEND and AP Green Paper closed before the summer holidays (22 July 2022). The DfE received several thousand responses, many of which came from parent carer forums and individual parent carers. DfE also held 175 engagement events many of which were hosted by or involved parent carer forums.

There were also responses from local authorities, schools (mainstream, special and AP) and health providers amongst others.

The NNPCF have attended several meetings with DfE officials over the last few weeks to discuss the next steps on the green paper and we continue to have input into the next stages of the proposals. Key points from these conversations include:

The DfE will publish a response to the green paper consultation in a National SEND and AP Improvement Plan by the end of the calendar year. This will set out government’s response to the consultation, and the next steps for delivering these reforms.

We have engaged in conversations about the formulation of national standards.

Whilst the contents of these discussions remain confidential, we can share that we have continued to make the following points.

  • National standards must drive and enable early intervention, particularly for those children and young people that do not have an EHCP Standards should be based on the holistic needs of the child and young person, not on diagnoses or conditions
  • Standards should be based on the holistic needs of the child and young person, not on diagnoses or conditions
  • There needs to be a strong link between standards used by practitioners when supporting individual families and standards that are used when planning, designing, and commissioning services.
  • Coproduction must be the core principle throughout all standards

The SEND and AP Green Paper and its progress remain a high priority for the NNPCF and we will continue to keep you updated on progress.

However, we are also very clear that our children and young people cannot wait for new legislation and reforms to improve services- there also need to be programmes of work targeted at improving services now. We are also working with the Department for Education and NHSE to focus on these areas.

We will update you on these over the coming weeks.

Categories
NNPCF

Statement from NNPCF

We, the National Network of Parent Carer Forums wish to extend our sincere condolences to the Royal family on the death of Her Majesty Queen Elizabeth II at this extremely sad time.

Her selfless duty and dedication to the people of the United Kingdom and the Commonwealth will never be forgotten.

Her legacy will continue to serve as an example to our own parent carer forums around the country.

We understand that the sad passing of Her Majesty the Queen will affect our families differently.

It may be a tough time, especially for some of our children who might find it difficult to understand.

The following links could be useful when explaining the Queen’s passing:

https://www.autism.org.uk/advice-and-guidance/coping-with-the-passing-of-the-queen

Supporting children and young people on the death of Queen Elizabeth II (childhoodbereavementnetwork.org.uk)

Talking to children about grief – Cruse Bereavement Support

https://www.place2be.org.uk/about-us/news-and-blogs/2022/september/supporting-your-child-when-someone-famous-dies/

Categories
consultations Education NNPCF work Parent Carer Forums Support for CYP with SEND

NNPCF response to the call for 100% school attendance in September

Dozens of SEND families responded to our call for evidence. They told us that the lack of support in school means that their children find it impossible to attend school regularly

Following the Children’s Commissioners ‘Voices of England’s Missing Children – The findings of the Children’s Commissioner’s Attendance Audit June 2022’ that was published on 26 June, we launched a call for evidence to collect parent carers experiences on their child’s school attendance.

You can find the report and our initial response by following this link: Children’s Commissioner’s Attendance Audit – National Network of Parent Carer Forums C.I.C (nnpcf.org.uk)

When the audit report was released, it stated that 100% of children must attend school on the first day back in September. 

Unfortunately, the report was not well received within our community. Many parents felt that, in a lot of cases, children were missing education through no fault of their own, due to lack of support and understanding within their school.

We asked parent carers, whose children were not attending school, to share their experiences with us.

Despite only limited publicity we received dozens of responses. 

In most cases, parents describe situations where their child wants to attend school, but because their concerns are not listened to, and there is inadequate or no support in place, they are unable to do so.

Too often, parents describe their children as becoming suicidal when they were forced to attend without the correct understanding and support: 

“By the end of year 6 he was 3 years behind in his learning, but school had not picked up on this. He had spent so much time in emotional turmoil in school he learnt nothing. He went to high school and lasted 3 months. Due to Covid SATs had not taken place and primary school failed to inform high school of his struggles both emotionally and academically. He expressed his wish to die and he was suicidal. High school failed to recognise this despite me pleading for help. They told me all Sen children say they want to die but none act on it. My son attempted suicide 3 times before we received any support from school or CAMHS.” 

“Decision makers showing compassion, after an overdose was taken by my child, they didn’t even ask if we were ok. Straight into risk assessments and how our child would no longer be allowed to go to the toilet on her own. We were dismissed, patronised, ignored with little co-operation from senior leaders/decision makers” 

“She started suffering from anxiety around school at the end of year 5 when they first took mock SATS. Year 6 was difficult but school did not recognise her anxiety… The end of year 6 was the first time she was admitted to hospital for suicidal behaviour. The new school however chose to ignore the provision summary. They did not accept my daughter’s needs. By November, she was admitted to hospital again” 

“Primary school refused to listen to our concerns which we started to raise in Year 1. No help from health services for mental health despite us reporting from age 6 that she was highly distressed and saying she wanted to die… Primary school treated her school anxiety and distress as an attendance issue and offered no support to deal with bullying or reasonable adjustments. Headteacher repeatedly tried to strong arm us into sending her to school only two weeks after a serious mental health crisis.” 

The lens approach to the findings are as follows

We asked ‘is your child in Primary, secondary, specialist, independent or college or not placed’ 44% of all respondents said Secondary

When asked

  • is your child on a reduced timetable
  • is someone educating them at home (with school supplied learning or EOTAS) or
  • or home educating that is not selective/elected

Our respondents told us of their children’s part-time timetables. 

One parent told us that their child, who is in a mainstream primary, only attends school 8 hours per week at an alternative provision which was provided by the school where the child is on roll. 

Another parent reported that their child at a mainstream secondary school attends mornings only. This was after experiencing and receiving school related trauma from CAMHS, when the child was attending primary school.

This case is not in isolation, other parents have had similar experiences, with many children not receiving any education at all. 

Parents were also asked how long their child’s attendance had been affected. The range was 8 months to 9 years, with 63% respondents saying that their child’s attendance had been affected for more than a year

We then asked ‘what things or chain of events had got them to where they are now?’ 79% of respondents said it was school. Some of the issues they reported were: 

  • Lack of support from Key leaders in school 
  • Lack of diagnosis so schools could appropriately support 
  • Lack of evidence for an EHCP – therefore specialist support couldn’t be put into place 
  • Poor communication
  • Poor knowledge by teachers in regard to SEN 
  • Schools couldn’t meet the needs of the children 
  • Lack of training 
  • Poor or no transitions 

In line with our solution focused way of working, we asked ‘what could have made it different?’

66% responded with school, the main points being: 

  • Suitable placements/provision being available in local area 
  • no exclusions
  • an acknowledgement of needs 
  • earlier intervention 
  • believing medical evidence when presented 
  • meet legal obligations 
  • updating school records and staff reading them 
  • more awareness of anxiety and mental health. 

We asked parents ‘what did they want for their child?’

41% responded said school in their response.

Not surprisingly, all parents said that they wanted their child to be happy. And almost every parent said that they wanted an education for their child.

Some parents commented that they knew what their child wanted to do as a career. 

Our final question asked about the needs of their child.

54% responded that their children had anxiety. With a lot of parents waiting for a formal diagnosis of Autism or ADHD. 

Below you can read more quotes from the responses we received. This illustrates the situations that our families continue to experience: 

“Anxiety (presenting as stomach aches), medical investigations, bullying at school.  Pandemic showed up existing issues more clearly.  Occasional absences which became more frequent, no support from school without diagnosis and long waiting lists for help.  Full school phobia (panic attacks and suicidal ideation) then threats of fines and prison were the last straw.” 

“X developed serious mental health issues at start of final lockdown after walking past previous primary school and experiencing a flashback and panic attack, which led to further eating issues requiring [received] dietician input after dropping 2 centiles and losing 2&1/2 stone. Told he has experienced school related trauma by CAMHS but no further help or support.” 

“He needed somewhere that understood anxiety, there’s no placements that have that ability unless very rare spaces become available. Lack of suitable education has failed him.” 

“School failed our child who has significant disabilities and SEN, couldn’t meet needs, child was on a part time timetable. Head teacher didn’t believe our child is disabled (two specialist teachers told me the head teacher kept calling them to check/ask/clarify) and was a nightmare to deal with!” 

“Anxiety for my daughter (15) started at the beginning of Year 10 – Sept 2021. School were unsupportive – offering to support attendance but nothing to actually support mental health. Year Head was dismissive and access to SEMH/ABSA support was initially blocked/denied. Pressure from school about attendance and refusal to authorise absence to a mental health ‘crisis’. Evidence from GP and CAMHS was provided & then School reconsidered. They then offered Early Help – May this year (several months too late)” 

“I wanted him to be able to go to school and be happy. But now I want him to receive funded EOTAS via tutors etc. We are currently funding this ourselves on top of me having to quit my senior management job in the NHS to care for him.” 

“No one was interested in what was best for my child. They only were bothered about their school. The research is really clear, that children with Down Syndrome will reach better academic outcomes in mainstream school. Article 24 of the UNCRPD also says children have the right to a mainstream education. The law though, gives the schools the right to refuse. The LA insisted on consulting with special schools, even though they knew they would end up losing at tribunal if they named one.” 

“[We wanted] Compassion, empathy and understanding from school, not judgment and threats. Proper, consistent SEN support, not stop-start interventions, that were what my child described as ‘the wrong help.’ After access to diagnosis, listening to parents and our child, instead of dismissing concerns. Prevention of bullying of SEND children.” 

“[We want]To be healthy, happy and enjoy life. An education in a system which appreciates and accepts them for who they are and what they are capable of.” 

Categories
consultations NNPCF work

National research to develop policy and practice recommendations on resetting services to disabled children

The NNPCF have been part of a steering group where research has been carried out on the effects of SEND services throughout the Covid-19 pandemic and the reopening of services following the easing of restrictions.

The research has been carried out by a team at Newcastle University, and they have looked at national and international data, interviewed parents, carers, young people and professionals.

The aim of the research is to make policy recommendations in case of future pandemics or emergencies. The next step in the process is to take the recommendations to stakeholders to share the findings and receive feedback on them. 

The following text has been written by the NIHR Policy Research Programme. Please continue reading for details on how to take part in the project and how to have your say.

The NIHR Policy Research Programme commissioned research to provide policy recommendations on improving services for children with disabilities, learning from experiences during the pandemic PRP Reset. The research is led by Newcastle University and includes NHS and Local Authority professionals, parent carers, researchers, and advisory groups of family representatives and young people.

For the project we reviewed international evidence on the impacts of changes to services during the pandemic. We interviewed families, professionals, service leads and commissioners about which changes worked well and/or were not helpful.

We have drafted recommendations for practice and would like your feedback on them. We want to know if the problems and solutions fit with local experience. Your feedback will help to refine the recommendations, ensure they are relevant and practicable, and directly inform national guidance.

We are running 1-hour workshops on Teams from 6-15th September for professionals and parent carers to provide feedback on the recommendations.

You can sign up to participate in a workshop by following the relevant link below:

Professionals: https://www.eventbrite.com/e/professionals-your-views-needed-on-resetting-services-to-disabled-children-tickets-387005191947

Parent carers: https://www.eventbrite.com/e/parent-carers-your-views-needed-on-resetting-services-to-disabled-children-tickets-388784634307

We will send you the draft recommendations and joining instructions once you have a place. If the workshop you have selected is full, we would like to keep you informed about the findings.’’

Categories
consultations Department for Education NNPCF work SEND Review

NNPCF response to the SEND Green Paper and Alternative Provision consultation.

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 ran a webinar on 11 July to share the interim results from the survey with our membership – you can watch this webinar here: Find out what parent carers have told us about the SEND Green Paper and coproduce the NNPCF consulta – YouTube
  • 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.

You can download our response here: https://consult.education.gov.uk/send-review-division/send-review-2022/consultation/my_response?user_id=ANON-EXGA-GCYM-N&key=4e7902bd78ecf85c7a57aa2ee04102bde9ae9802

Below you can find the responses we received to our SEND review survey, which informed the response we submitted to the Green Paper consultation.

Categories
NNPCF work

Representing your views: NNPCF work to share the parent carer perspective

Despite the recent political turmoil, the NNPCF has continued to represent the views of parent carer forums with key national and local bodies. At a time when the schools, health and care systems are starting major reforms, the NNPCF is working hard to make sure that the view of families are considered by those people responsible for shaping and delivering services.

On 24 May, NNPCF cochair Mrunal Sisodia attended the special session held by the Education Select Committee in response to the SEND Green Paper. The Committee has recently written to the Department for Education with its recommendations and many of the key points raised by the NNPCF are included in the letter including:

  • The need to greater early intervention – not enough money is spent early and too much only when families “get to crisis.”
  • The need for improved accountability and the NNPCF call for Ofsted to require that in order for a school to be rated good or outstanding, it must be good or outstanding at SEND
  • The call from the NNPCF for Education Health and Care Plans to become “Employment Health and Care Plans” at transition to help support young people start a career.

You can find the full letter here: Education Committee – Correspondence – Committees – UK Parliament

Following a fallow period during the pandemic, major national conferences have been running again and Mrunal has also represented the views of the NNPCF at several large events recently. Mrunal attended and spoke at the Local Government Association conference to local councillors and local authority chief executives in Harrogate. He also spoke at the Conference of the Association of Directors of Children’s Services in Manchester to an audience comprised of DCS’s and their deputies. And finally, Mrunal attended the virtual Westminster insights conference into SEND.

At all these events Mrunal gave feedback on the recent SEND Green Paper and the NNPCF response emphasising again, the need for early intervention, joint working, and coproduction with families. Whilst minutes and transcripts from these events are not made available, you can find the key points Mrunal made here in the NNPCF webinar providing the initial response to the SEND Green Paper NNPCF response to the SEND Green Paper – YouTube

Finally, the NNPCF continued its involvement in supporting the training of elected councillors through delivering a course on the Local Government Association “Children’s Leadership Essentials” course. Over the years the NNPCF has trained hundreds of local councillors on the lived experience of families with SEND and the value of effective coproduction through this programme. Mrunal was joined by one of our national representatives, Heather Delaney for this event.

Categories
Department for Education Government Minister for children and families

Confirmation of Ministerial changes

The last few weeks have been very turbulent for the government with Boris Johnson standing down once a new Prime Minister (PM) has been voted in by the Conservative party.

As you will know , Will Quince stood down from his Ministerial role of Children and Families Minister.

This caused a lot of questions regarding the Green Paper Send review, including whether the review would be continued, postponed, or concluded early.

We have now received confirmation from our colleagues at the Department for Education (DfE) that Will Quince has accepted a new position in the government as the Minister for School Standards which includes SEND and the SEND and AP Green Paper.

This gives the new government ministerial continuity, which of course we are very pleased to hear, however, we know there will be more changes once the PM is appointed.

The responsibilities of Minister Will Quince can be found on the government website:

https://www.gov.uk/government/ministers/minister-of-state-for-school-standards

The Alternative Provision (AP) brief is with Brendan Clarke-Smith, Minister for Children and Families, who will be working closely with the DfE team to ensure the links work with Alternative Provision and the wider children and families agenda.

Knowing this information, we would encourage you to complete the SEND Green paper review, https://consult.education.gov.uk/send-review-division/send- review-2022/ which remains open until 22 July 11.45 pm

Our own NNPCF SEND green paper review survey closes next week too, there is still time to get involved:  https://bit.ly/NNPCFGPAP

Categories
Children's Commissioner

Attendance Alliance meeting

On Tuesday 28 June, our co-chair Tina Emery attended the Attendance Alliance meeting. The Secretary of State, Nadhim Zhawi, chaired the meeting.

The main focus of the meeting was the intention to ensure 100% of all school children would attend school on the first school day in September and to launch the accompanying campaign.

Tina addressed the attendees and expressed concern that the statement could negatively impact children and young people with SEND. She stated that the NNPCF would not be supporting the campaign.

She acknowledged that the target of 100% attendance in school is attainable for the majority of children, however, for some especially those with SEND, school is not always seen as a safe space.

Tina then shared 2 examples of the case studies submitted to the NNPCF. One of the stories included a child for whom school attendance was so challenging and stressful that they wanted to end their life.

Tina reminded the alliance that NNPCF was a solution focused organisation and suggested forming a working group with the other members of the alliance focusing on the attendance issues for SEND children.

She hoped the working group could discuss and work through the issues that our SEND children and young people face. The goal of 100% attendance could be achieved for all children, however, with additional support and understanding.

Other members of the Alliance, including the Council for Disabled Children, a special academy Multi Academy Trust chief executive and Ofsted agreed with Tina’s comments and offered to be part of the working group.

The meeting date for this working group has yet to be confirmed.

To follow up, Tina met with the Children’s Commissioners office 7 July 2022.

The conversation about the attendance audit went well and it confirmed what we have been hearing from our parent carer membership.

Tina iterated that unfortunately, it was not how the document had been received. The audit headlines focused on 100% school attendance, but not how the 100% attendance would be achieved. The conversation was as such, that she really did understand the fundamentals.

Going forward the NNPCF will be having regular catch up with the commissioner’s office. There will be a session with the Children’s Commissioner arranged for Autunm.

Tina told the commissioner of our recent call for evidence and that we received over 50 responses in the first 48 hours.

Please do continue to share our Call for Evidence form with your membership https://forms.office.com/r/sUhNJtb5RY

Categories
Department for Education NNPCF work parent carer forum guidance Parent Carer Forums SEND Review

Ministerial changes and what’s next for the SEND Green Paper

The last 24 hours of political turmoil have seen changes in the ministerial team responsible for the SEND policy and legislation including the Green Paper. Nadhim Zahawi has been promoted to Chancellor of the Exchequer and Michelle Donelan has replaced him as Secretary of State for Education. Will Quince, Children and Families Minister has resigned his position. At time of writing we have no news of his replacement.

Since 2017, there have been seven Children and Families Ministers (soon to be eight). The NNPCF are well versed in meeting new Ministers and introducing them to the work of parent carer forums. Whilst Ministers change, the challenges faced by our children have deepened and regardless of who is in post, we will continue to represent the views of parent carer forums to the best of our ability and work with officials behind the scenes.

What does this mean for the SEND review and the work of the NNPCF?

At time of writing, the SEND Green Paper remains in place and reform of the SEND system remains government policy. The NNPCF are continuing to meet with Department for Education officials to progress the work of the Green Paper and we will carry this work on until plans formally change. We continue to engage with the continuing consultation process – for example, yesterday NNPCF Co-chair Mrunal Sisodia met with DfE officials to plan a series of “stress test” workshops to look at how the new proposed system will meet the needs of some of the children that have been let down by the current system and today, the NNPCF board are meeting with DfE officials to brainstorm what the new national standards might look like.

Webinar with Minister Quince Monday 11 July

Clearly, Will Quince will no longer be attending the webinar planned for Monday. However, we intend to proceed with the Webinar and are currently in discussion internally and externally (including with the DfE) on alternatives.

We know this time will be especially unsettling for our families but do rest assured we will continue to focus on our priorities and will keep you updated on any developments.