Education NNPCF work Parent Carer Forums

Children’s Commissioner’s Attendance Audit

Earlier this week, the Children’s Commissioner published her report ‘The Voices of England’s Missing Children‘ – an audit into attendance in England’s schools.

Whilst identifying some of the issues surrounding school attendance and the challenges thrown up by experiences of many during the covid pandemic, the report calls for 100% of children to be back in school at the start of the new school year in September. Perhaps best regarded as a “call to action”, this will be impossible to achieve between now and September and carries significant risks for children and young people with SEND.

If the schools’ system focuses crudely on attendance, the wrong solutions will be pursued and punitive measures used to coerce families to make their children attend school when they are not ready, not properly supported, enrolled in an appropriate setting or in some cases not even assigned to any school. The report has its sights only on school attendance, not the very valid
reasons why many children are not attending school and the steps necessary to support schools and families in getting a child into school – for example a whole school approach or the strategies adopted by the autism in schools project

The report lays out six recommendations for the system relating to attendance covering a wide range of reasons why children may be out of school from exclusions to children who cannot attend because of caring responsibilities at home. We are very supportive of some of the recommendations in the report,
most notably the recommendation that decisions about children’s education need to be made “with children, their families and other adults in their lives.”

However, we have serious concerns about other aspects of the report:

  • Whilst we agree that school is the right place for the majority of children, for some children this is only true if they have access to the right school and / or the right support. The shortage of suitable school places means that many children with SEND are not in the right environment and the well documented issues with the SEND system mean that even those that struggle because they cannot access the right support from education, health and social care services.
  • The report talks about “exclusion as a trigger for intervention” – this is far too late. By the time a child is excluded, the damage is done. The NNPCF have consistently argued for a clearer framework that guarantees early intervention when families identify concerns – NOT when a child reaches crisis point. This principle has formed the basis of our input into the SEND review.
  • The report asks for school leaders to have a “relentless focus on attendance”. This puts the cart before the horse. All system leaders, school, health and social care need to have a relentless focus on the right support – for many children, poor attendance at school is a symptom of poor support. Moreover, additional pressure on children to attend when they are not able to will do nothing but further damage relationships between schools and families and amplify any existing anxieties children may have.
  • Throughout the report, the emphasis seems to be on the child and family to change with little attention given for the need for the school or health and social care services to change, make reasonable adjustments or step up earlier to provide the right support. The Equalities Act is unequivocal that schools must not disadvantage children with protected characteristics, sadly too many do just that

For more of our representations on school attendance see Attendance, behaviour and exclusions – National Network of Parent Carer Forums C.I.C

Health and Wellbeing NNPCF work Parent Carer Forums

Mental health and wellbeing survey launched.

The mental health and wellbeing of both our parent carer forum members and their children and young people with SEND is a priority for us, the NNPCF.

We are acutely aware of the impact that the COVID pandemic has had on everyone, especially parent carers.

We have created a survey to help inform our future work and to advise our response to the call for evidence to develop a new cross-government, 10-year plan for mental health and wellbeing for England.

The survey is two parts and will take around 15 minutes to complete.

The survey is open until 23 June 2022.

consultations Department for Education Education NNPCF work Parent Carer Forums SEND Review

NNPCF launch SEND Green Paper consultation survey for all parent carers.

The NNPCF have recently launched their parent carer survey on the SEND and Alternative Provision Green Paper consultation.

They hope to collect as many responses as possible from all parent carers, not just those who are involved in their local parent carer forums.

The responses of the survey will help to inform the NNPCF’s own response to the SEND Green Paper consultation.

Co-chairs Tina Emery and Mrunal Sisodia stated that, “The Green Paper is an opportunity to reset the SEND system after the 2014 reforms failed to deliver the improvements that families of children with SEND so desperately need. It is vital that every parent carer’s voice is heard and so we have launched a short, simple survey to gather parental views that we will use to inform our response to the Green Paper. We will, of course, also publish the survey results.”

You can complete the survey here:

The survey should take no more than 10-15 minutes to complete and remains open until the 30 June.

Committee Education Select Committee SEND Review

NNPCF gives evidence to the Education Select Committee

The NNPCF co-chair Mrunal Sisodia gave evidence to the House of Commons Education Select Committee on 24 May, when a session was held on the SEND Green Paper consultation.

Mrunal was joined by IPSEA chief executive Ali Fiddy, Local Government Ombudsman Michael King and Imogen Jolley, Head of Public Law at Simpson Millar.

In the evidence session Mrunal spoke to key points on the SEND Green Paper, including:

  • The need for the incentives in the overall education, care and health system to be aligned with the needs of SEND children, young people and their families.
  • The need for improved accountability in the sector to ensure that when needs were not being met issues could be addressed.
  • The need to listen to families and drive early intervention and stop families getting to crisis point before help is given. This increases needs, creates anger, frustration, mistrust, and costs more money.
  • The need for the Green Paper to say more about long term outcomes for young people with SEND beyond education such as employment, community inclusion and independent living.
  • NNPCF support for national standards in SEND provision that, if set properly and implemented effectively, would help to drive greater clarity in what families can expect and what services need to provide.
  • Parental concerns about naming a setting from a suitable list for children with EHCPs.
  • The importance of strong advocacy and independent support for parents, for example through SENDIAS services and keyworking.
  • The role of Ofsted and the desire from parents that no school should be classified as good or outstanding without being good or outstanding for SEND.

You can find a recording of the session here: The Government’s SEND Review – Committees – UK Parliament

Bills and legislations Department for Education Education NNPCF work Parent Carer Forums SEND Review

The SEND Green Paper: NNPCF briefing

What does it say and what does the NNPCF think about it?

The NNPCF co-chairs, Tina Emery and Mrunal Sisodia held a briefing on the contents of the long-awaited SEND and Alternative Provision Green Paper consultation for parent carer forums on 23 May.

A recording of the session can now be viewed by following the links below:

YouTube recording of the briefing

Slides from the briefing

Mentimeter survey results

The NNPCF have also published their parent carer survey.

They hope to collect as many responses as possible from all parent carers, not just those who are involved in their local parent carer forums.

The responses of the survey will help to inform the NNPCF’s own response to the SEND Green Paper consultation.

Co-chairs Tina Emery and Mrunal Sisodia stated that, “The Green Paper is an opportunity to reset the SEND system after the 2014 reforms failed to deliver the improvements that families of children with SEND so desperately need. It is vital that every parent carer’s voice is heard and so we have launched a short, simple survey to gather parental views that we will use to inform our response to the Green Paper. We will, of course, also publish the survey results.”

You can complete the survey here:

The survey should take no more than 10-15 minutes to complete and remains open until the 30 June.

Care Quality Commision NNPCF work

Care Quality Commision (CQC) presentation 20/04/22

Attended by Tina Emery and Sarah Clarke

Prior to the meeting a quick mentimeter survey was sent out with questions to all forums, about the CQC’s role in the LA SEND Inspections and how forums understood the CQC’s role in the inspections.  A limited number of forums replied due to the Easter holidays, although 65 forums did respond.

The mentimeter survey clearly demonstrated a lack of consistency in forum involvement and understanding of the role of the CQC. Even following a Written Statement of Action (WSoA) and a revisit.

The presentation was received well and generated discussion around the consistency of forums involvement in the inspection process and how could the CQC improve forums understanding and communications between forums and CQC.

This was the first time that the NNPCF have been asked to present to the CQC and the feedback at the meeting was positive and likely to lead to additional coproduction work between the CQC and the NNPCF.

consultations Department for Education Education Minister for children and families Parent Carer Forums SEND Review

SEND Green Paper engagement events with the Department for Education and parent carer forums

The special educational needs and disabilities (SEND) and alternative provision (AP) consultation was published at the end of March. The NNPCF have been working with the Green Paper team at the Department for Education (DfE) to organise a series of engagement events for parent carer forums to feedback and discuss the plans outlined in the Green Paper.

There are three different categories of events:

A national webinar hosted by NNPCF co-chairs Tina Emery and Mrunal Sisodia – 12 noon 23 May

At this event Mrunal and Tina will share the initial NNPCF response to the proposals. The session will step through the Green Paper outlining which proposals the NNPCF supports and which we have concerns about. The session will be interactive, and we will be seeking flash feedback from parent carer forums on their views of some of the proposals in the Green Paper. We will also outline the different ways that parent carer forums as well as individual parents can respond to the consultation and have their voices heard.

To sign up for this event please use the following link:

Regional events hosted by the Department for Education for Parent Carer Forums

The DfE Green Paper team will be attending NNPCF regional events to share the thinking behind the Green Paper and to have a discussion with regional parent carer groups about their thoughts on the proposals. In these sessions the DfE team will offer a short presentation of 20-30 minutes and then will take feedback and questions relating to the Green Paper for the rest of the hour. The objective of these sessions is to offer parent carer forums the opportunity to have frank and honest exchanges with the DfE team. The sessions will not be recorded due to confidentiality reasons.

The schedule of events is as follows:

RegionDateTimeVirtual or in person meeting
North East26 May11am – 12.30pmVirtual
North West   
Yorkshire and Humber24 May10amIn person York
West Midlands16 May1pmVirtual
East Midlands8 June10amVirtual
East of England12 May10am-2pmIn person – Cambridge
16 May 10am-12.30pmVirtual
South East20 May10am-12noonVirtual
South West10 May12:30pm-2pmVirtual (Teams)
Please note, any gaps to the table will be filled once confirmed by the DfE.
Details of how to join these meetings will be sent out through the usual regional parent carer forum channels.

National SEND review briefing hosted by Minister Will Quince

We are currently working with the DfE to organise a national webinar. This will give parent carer forums the opportunity to discuss and feedback to the DfE on the proposals set out in the Green Paper. Children and Families Minister Will Quince will host this event. Once the dates have been confirmed we will publish the webinar, with more information including how to register for the session.

Bills and legislations consultations parent carer forum guidance

Proposed changes to the Mental Capacity Act 2005 Code of Practice and implementation of the Liberty Protection Safeguards

Policy briefing for parent carer forums

The Government are consulting on the proposed changes to the Mental Capacity Act 2005 (MCA) Code of Practice, which includes guidance on the new Liberty Protection Safeguards (LPS) system. The consultation is also seeking views on the LiPS regulations, which will underpin the new system.

You can access the consultation here.

This is a joint consultation published by the Department of Health and Social Care (DHSC) and the Ministry of Justice (MoJ).

The LPS will apply to people over the age of 16, and the Department for Education (DfE) has been involved in the development of this new system.

What is Mental Capacity?

Mental capacity is the ability to make decisions.

This could be small decisions like what we eat or the clothes we wear, or could be much bigger decisions, for example where we live and who we live with.

The Mental Capacity Act (MCA) sets some important key principles. 

  • The starting point should be that a person must be assumed to have capacity unless it is established that they lack capacity.
  • A right to support in making decisions: “A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.” The right to make unwise decisions: “A person is not to be treated as unable to make a decision merely because he makes an unwise decision.”
  • Capacity is based on a single decision at a single time, so some people may have fluctuating capacity, meaning they can decide one day and not the next depending on their wellbeing. Therefore, this needs to be taken into consideration when assessing capacity and considering a time when someone is likely to be at their most able to make a decision.

Provision is made in the Children and Families Act to deal with this.

Under the Act, lacking mental capacity has the same meaning as in the Mental Capacity Act (MCA) 2005.

The Mental Capacity Act 2005 sets out what should happen when people are unable to make one or more decisions for themselves. It clarifies the roles that different people play in decision-making, including family carers.

Children under 16

For children under 16, the Mental Capacity Act does not apply.  Instead, a child needs to be assessed whether they have enough understanding to make up their own mind about the benefits and risks of treatment – this is sometimes termed ‘Gillick competence’ and means that the child has the competency to give consent and make decisions. The term ‘Gillick’ competence is usually used when considering medical treatments.

What is Deprivation of Liberty Safeguards (DoLS)?

The Deprivation of Liberty Safeguards (DoLS), referred to as ‘safeguards’ are part of the Mental Capacity Act (2005). They aim to protect people in care homes, hospitals, and the community from being inappropriately deprived of their liberty or that the appropriate process is followed if the person does not have capacity and is being deprived of their liberty. 

When considering a deprivation of liberty for a 16- or 17-year-old, where the young person lacks capacity to consent themselves to arrangements which meet the ‘acid test’ for deprivation of liberty (i.e., under continuous supervision and control and not free to leave), it is not sufficient for parents to consent to this arrangement. In such circumstances the Court of Protection will often need to approve such an arrangement.

It is recognised that in most situations, providers and families are working in the best interest of a young person. Often when a young person is deprived of their liberty, it is usually with the purpose to safeguard them from harm or harm to others. However, when considering any action, for example preventing a young person from leaving a home, thought should be given to what is the least restrictive option for the young person, whilst keeping them safe.

What are Liberty Protection Safeguards?

The Liberty Protection Safeguards were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the Deprivation of Liberty Safeguards (DOLs) system. The UK government is now consulting on draft regulations which will underpin the new system.

It is envisaged that the new LPS will provide a more streamline system to manage any deprivation of liberty. The implementation of these new arrangements has been delayed and so far, there is no confirmed date when they will be introduced. Therefore, the present arrangements will remain in place for the near future.

When introduced the Liberty Protection Safeguards will provide protection for people aged 16 and above who are or who need to be deprived of their liberty to enable their care or treatment and lack the mental capacity to consent to their arrangements.

People who might have a Liberty Protection Safeguards authorisation include those with autism and learning disabilities who lack the relevant capacity.

What does this mean for forums?

  • Forums should make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums should be aware of the how mental capacity is assessed and decision making supported in their local area for young people with complex needs.
  • Forums should consider how this may affect the education and wider outcomes children and young people with complex needs are achieving.

Bills and legislations Parent Carer Forums

Down Syndrome Bill update April 2022

Article updated 02/05/22

What is the Down Syndrome Bill?

The Down Syndrome Bill is a private members bill sponsored by Dr Liam Fox MP and Baroness Hollins. The purpose of the Bill is to “Make provision about meeting the needs of persons with Down syndrome; and for connected purposes.”

The Bill stipulates:

”(1) The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.

(2) Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.

(3) Before giving the guidance the Secretary of State must consult such persons as the Secretary of State considers appropriate.

(4) The Secretary of State must publish the guidance in such manner as the Secretary of State considers appropriate.”

The Bill then stipulates what are relevant authorities; they include any public body that might provide services or support to people with Down Syndrome, except for welfare benefits.

Progress through Parliament

On 1 April 2022, the Bill passed the third reading in the House of Lords. As there were no amendments, the Bill is now in its final stages and will receive Royal Assent before the end of the current Parliamentary session, thereby becoming law – the Down Syndrome Act 2022.

The DS Bill is supported and championed in Parliament by 43 MPs and Lords who form the All-Party Parliamentary Group (APPG) on Down Syndrome. Their current five priority areas are:

• maternity care

• education

• employment

• social care

• health care/research

Next Steps

It is expected that the statutory guidance to relevant authorities will be laid before Parliament in Spring 2023.

The National Down Syndrome Policy Group (NDSPG) support people with Down syndrome to have a say in the formation of policy in matters that impact their lives. NDSPG supporting bodies include 39 national and local organisations including Mencap, Down Syndrome Education International, Positive About Down Syndrome (PADS).

The NDSPG is one of several organisations that will be involved with the open consultation.

The Department of Health and Social Care (DHSC) will facilitate the open consultation.

The consultation mandated by the Bill will inform the statutory guidance. This includes input by adults with Down Syndrome.

The Down Syndrome Association, who are committed to improving the quality of life for people who have Down syndrome, will be submitting their own response. You can find further information on their website:

Details on how to get involved with the DHSC consultation will shared once published.

What does this mean for forums?

  • Forums should be aware of the Down Syndrome Bill and make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation on statutory guidance (when published) or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums may wish to look in more detail at examples of good practice elsewhere and work with partners to develop a Down Syndrome pathway and improve local and practice and services.

Further information

The Down Syndrome Bill

The National Down Syndrome Policy Group

All Party Parliamentary Group – Down Syndrome

Covid-19 NHS England

NNPCF concerns about the implementation of the NHS Long Term Plan

The response and recovery from the Covid 19 pandemic and implementation of the NHS Long Term plan are critical to parent carer forums and are key priorities for the NNPCF.

We have been hearing very clear feedback on issues in the health system and around the implementation of the NHS Long Term Plan from parent carer forums and the regions.

NNPCF steering group members Kath Bromfield, Jo Gilliland, Ros Luff, Mrunal Sisodia, met with NHSE leaders Phil Brayshaw and Lorraine Mulroney on 18 March and shared some concerns with them.

1. Capacity across the system to deliver the key LDA projects.

We are aware of several capacity issues which are impacting ability to deliver on some of the key LDA projects. Factors include, in no particular order:

  • Community health services have huge waiting lists
  • Schools are struggling to remain open with the various Covid impacts. This includes staff sick absences and keeping ahead of the DfE contingency plans for exams and any future peaks in the pandemic.
  • Whilst there is willingness to engage with the Autism in Schools project, on a practical note schools may not be able to prioritise this.
  • Parent carers may be under extra demand with their caring responsibilities with children off school with covid related issues.
  • There is pressure on forums time resource where the projects overlap, and it is the same parents involved (see also co-production paragraph).
  • This has been compounded where some projects have been slow to start and are now being rolled out at pace, putting increased pressure on forums.

2. Disconnect between the regional implementation and the national team

There are differences between the national team vision and regional implementation. Whilst this will always be the case due to regional differences, sometimes it seems there is little link up. Regional teams are reporting that whilst the flexibility on how to implement projects is welcome and allows for regional / local implementation, they would appreciate more of a structure and framework on how to implement projects.

3. Quality of coproduction is very varied.

Feedback from forums indicate a very mixed picture around co-producing. Some areas were involved late on in a project whereas others were fully involved from the start.

We have heard that some experienced good co-production or engagement at the early expression of interest stage but then less involved as the project commenced. Some forums report only being involved at an interview stage but not in helping shape the role or service.

The increased use of virtual platforms has given opportunities for parent carers to be involved in a greater number of meetings & events. However, there has been a gradual drift away from involving their voices when organising these meetings. Often these are held at times which clash with school runs and other caring responsibilities. There is also a lack of recognition that parent forums work across partners, and this can lead to unreasonable expectation regarding availability.

There can be high expectations placed on parents to deliver presentations etc, often at very short notice.

One of the issues which impacts opportunity for good engagement or co production is that many health partners do not understand the nature of parent forums. i.e. forums are neither a supplier nor individual patient advisers. This issue is impacted further by high churn of staff.

On points 1-3 we agreed with Phil and Lorraine that we would work with the NHS LDA and SEND leads to coproduce a national, regional and local model of engagement and coproduction

4. Designated Clinical Officer / Medical Officer

DCO / DMO role remains very variable across the country. The resourcing issues post Covid and the move to ICS Integrated Care Systems is exacerbating these differences.

The roll out of ICS’s along with the changes has served to push SEND to a lower priority. It is hard for forums to keep abreast with the changes and navigate the new structure. This can also result in staff changes where relationships & understanding of forums need to be rebuilt.

Lorraine agreed to work with her SEND leads to cascade the key requirements of coproduction to the DCO

5. Strain on services in the wake of the pandemic

The pandemic has exacerbated the pressures on community health services (therapies, CAMHS, paediatricians). The already lengthy waiting lists have increased with higher demand from cohorts who are new to the services. This is causing extreme stress and increased harms in the system with families often waiting over 6 months for basic services

The loss or reduction of service during the pandemic has seen some of the existing users deteriorating and needing more specialised services. This is further impacted by many targeted / specialist services being on hold.

As a result of extra pressures in the system there is a struggle for services to manage EHCP and annual review workload. In turn, it is likely there will be greater demand for EHCPs and more looking to tribunal to obtain support.

Lorraine updated that work is ongoing at the senior levels of government to address these issues. She agreed to host a webinar in June to update parent carer forums. This has been scheduled for noon on 7th June.

Register in advance for this meeting:

After registering, you will receive a confirmation email containing information about joining the meeting.