Categories
Health and Wellbeing

ADHD Medication Safety Alert

On 27th September 2023, the Department of Health and Social Care issued a Patient Safety Alert regarding the shortage of specific ADHD medications.

It has been reported in the press that the disruptions are expected to continue, and so we have written to the Ministers outlining our concerns, and what steps the government is taking to address the shortage of medication, and the increased levels of support that is needed for children and young people in education.

You are welcome to share this letter with your families and to support conversations within your local area.

NNPCF-Letter-to-Ministers-January-2024-24Download

For more information on this safety alert click on the link: http://tinyurl.com/k9u37jxj

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Department for Education Health and Wellbeing NHS England NNPCF

Our work with the National Health Service England

Our work with National Health Service England (NHSE) to develop health services.

Last year, the NNPCF was appointed the strategic partner for the Learning Disability and Autism workstream of the Children and Young People’s Long Term Plan.

In this capacity, we have been working alongside our NNPCF regions and local forums to develop services for children and young people (CYP) with learning disabilities and autism (LDA). We wanted to take this opportunity to share our work on two important areas – Autism in Schools and Keyworking.

Autism in Schools (AiS)

The foundations of the AiS programme were based on supporting families and schools in innovative ways.  

The aim was to

  • raise awareness of the needs of young people with autism,
  • listen to the voice of young people and their families, and
  • model and implement practical ways schools could improve the experience for young people with autism.

This involved bringing together health and education expertise to take steps to support children who were finding school a challenge due to their disability and ultimately to reduce inappropriate educational exclusions and hospital admissions.

After a successful pilot in the North East and Cumbria, this project is in the process of being rolled out across England.

To date there are 15 projects, covering 210 schools, these projects are about to embark upon the second year of delivery and take on more schools (minimum of 97 at the point of writing).  All projects are implementing the 3 key elements of building relationships, increasing knowledge and hearing the young person’s voice. 

The offer of the project differs from region to region, however there are 9 projects who are working with AET (Autism Education Trust)*, or using the AET resources, and 7 of the projects have made links with the mental health support teams in their locality. You can find out more about projects local to you from your regional NNPCF representative.

Improving outcomes for children in school with Autism

The pilot in the North East & North Cumbria was delivered in two phases, evaluations for these are below:

Link to the autism accelerator PDF
Link to the phase 2 evaluation

Parents were telling us that there were too many missed opportunities with this in mind the ethos behind the project was to bring together parent carers & schools, by implementing ‘mini forums’ within schools, providing support, signposting, facilitating workshops to meet parent carer needs within the setting and ultimately creating a network of peer support for parents with children within the school setting.

Alongside this, a series of workshops were delivered to school staff and the parent carer forum representatives who were supporting the mini forums element, at the same time looking at potential reasonable adjustments that could be made which would benefit CYP in educational settings. There was also an ‘all about me’ element to the training, so that school leads could train the trainer and deliver the workshop to students.

Keyworking

The NHS Long Term Plan includes a commitment that ‘by 2023/24 children and young people with a learning disability and/or who are autistic with the most complex needs will have a designated keyworker, implementing the recommendation made by Dame Christine Lenehan in ‘These are our children’.

Initially, keyworker support will be provided to children and young people with a learning disability and/or who are autistic who are inpatients in, or at risk of being admitted to, a mental health hospital. Keyworker support will then be extended to the most vulnerable children with a learning disability and/or who are autistic, including people who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.

The framework (which was co-produced with parent carers and children and young people) that underpins the service is that children, young people and their families should:

  • feel safe and happy
  • feel listened to and informed
  • feel involved in their plans, care and support
  • experience a reduction in stress and uncertainty and an increase in stability

In their role as strategic partner to NHSE, the NNPCF sit on the national steering group, the evaluation group and the workforce development group to ensure that representation is made on behalf of the parent carers who feed into us via regions and localities. Though the workforce development group we have ensured parents voice has helped shape the design of the mandatory training. This has been informed both by those with lived experience and feedback from our various network meetings, including the PCF Community of Practice.

Alongside this, parent carer forums are involved in their regional projects. The first two waves of the project (initial pilot and early adopters) have already been rolled out. We are currently (2022/23) in wave three of the projects, which brings keyworking to all remaining localities in England. Because of this phased approach, projects are in different stages of delivery.

NNPCF representatives and regional forum members have regularly attended the national Community of Practices (CoP) for each of the stages. We have taken the opportunity to deliver presentations on partnership/coproduction with forums at the various CoPs. We have ensured the parent perspectives are shared in the CoP and some regions have co presented on their project with their regional partners.

NNPCF have also been hosting a CoPs for parent carer forums to attend, share good practice and learn from others who at differing stages of project delivery.  These CoPs offer an opportunity for forums to share a more focussed discussion, around keyworking from a parental perspective, than can be achieved in the CoPs with wider partners.

Joining links are shared on NNPCF social media and can be sent by your NNPCF steering group member.

*AET are a not-for-profit organisation supported by the Department for Education

Communication Access UK is an initiative developed by the Royal College of Speech and Language Therapists in partnership with charities and organisations that share a vision to improve the lives of people with communication difficulties. The NNPCF have been part of the steering group to create and develop the Communications Access Symbol from the beginning. It is a new disability access symbol underpinned by a completely free training package and standards. The NNPCF is currently working towards accreditation of the symbol, and you can join us by registering your forum, and sharing with your Local Authorities and health services. You can complete the training either as an individual or as an organisation. Find out more about the symbol here: https://communication-access.co.uk/about/

The training consists of 4 short e-modules that can be completed in your own time and is free to do. Once completed you will receive a certificate that will be valid for one year.

To hear why the symbol is important to people with communication difficulties please watch this video: https://www.youtube.com/watch?v=kD5_p_YZ1PY&t=1s

Categories
NNPCF NNPCF work parent carer forum guidance

Political Instability: What does it mean for SEND?

You will all have noticed the political instability over the last few months and weeks. Many parent carer forums and others in the SEND system have been asking what this means for SEND and how they should be responding.

Ahead of each financial year, the NNPCF outlines its strategy which includes a clear set of priorities for the coming year. You can see our presentation on this from our annual conference in March here NNPCF AGM – A review of the last year and coproducing our priorities for the coming year – YouTube

We outlined five priorities for the year. These included the SEND Green Paper, the Schools Bill and the NHS Long Term Plan. It is clear that the current political turmoil may impact these.

We do not yet know what will happen to some of our priorities

An uncertain legislative programme

At time of writing, the legislative programme of “in flight” bills (including the Schools’ Bill) has been paused for review by the new government. We have specifically asked the Department for Education what this means for the Schools’ Bill and at time of writing they are unable to share which pieces of legislation will proceed in the current session of parliament.

Similarly, it is impossible to say whether the legislation required to implement the SEND Green Paper will be part of next session of parliament – no-one (arguably including the current Prime Minister) is in a position to say with any certainty what will be a part of the first Kings Speech (see note below). However, we know that the DfE continues to work on the response to the SEND Green Paper as we outlined in our article earlier this month. Department for Education update – National Network of Parent Carer Forums C.I.C (nnpcf.org.uk)

An uncertain financial programme

Similarly, you will have noted the financial turmoil recently following the mini budget at the end of September. The government and new Chancellor are still working on what the changes announced will mean for public spending. We cannot rule out that there may be cuts in services and programmes associated with SEND. This includes parts of the NHS Long Term Plan.

A shift in our strategic focus

This has led to giving greater focus to some of our work at a national level. Namely:

  • We will continue to engage with national government and the NHS to shape and deliver the work that is ongoing including the SEND Green Paper, the Schools Bill and the NHS Long Term Plan.
  • Because of the legislative and financial uncertainty, we are placing greater emphasis on those parts of the plans that do not require legislation or are financially committed for the coming periods. The sequencing of changes that will make a difference to families become a relatively higher priority. For example, the new Ofsted / CQC local area inspection framework; the regional educational directorates being set up by the Department for Education and the new NHSE Dynamic Support Register and Care Education and Treatment Review policy.
  • Similarly, we are increasingly focusing our work on those initiatives that are looking at improving the SEND system here and now. These include the Delivering Better Value and Safety Valve programmes – please look out for an update on these over the next few days

What can parent carer forums do?

It is clear that we cannot depend on major national initiatives to “rescue” the SEND system. Even if there were clarity over future plans, they would take several years to have an impact whilst many SEND families are in crisis now.

This makes the local work of parent carer forums even more important. Forums need to continue to represent the lived experiences of local families and work with their local areas to coproduce better services and more intelligent commissioning. This includes being involved in local implementation of ongoing programmes from NHSE (e.g. keyworking and autism in schools) and the DfE (e.g. Delivering Better Value in SEND and Safety Valve). Please look out for our updates on these programmes over the next week or so.

Regardless of the political turmoil, we continue to have very strong engagement with officials in government and from the NHS and will continue to work with them to progress the SEND agenda and represent the lived experiences of families of children with SEND.

Note: Each “parliament” is broken into “sessions”. Typically, there are 3 or 4 sessions in each parliament. The legislative programme for each session of parliament is announced in the monarch’s speech – until recently this was the Queen’s speech, but it will now be the King’s Speech. A parliament is marked by a general election and the current parliament started with the election of Boris Johnson as Prime Minister in December 2019. A change of “government” (e.g. a change of PM from Boris Johnson to Liz Truss) does not mean a new “parliament”.

Categories
consultations Government

Intergrated Care Systems call for evidence

The Public Accounts Committee are due to be questioning senior officials and executives at the Department for Health and Social Care (DHSC) and NHS England on the progress in establishing Integrated Care Systems in England.

They will examine if they are being set up in a way which allows them to achieve their objectives:  

  • improve outcomes in population health and healthcare
  • tackle inequalities in outcomes, experience, and access
  • enhance productivity and value for money
  • help the NHS support broader social and economic development.

To help and inform the NNPCF’s response, we have created a survey for forums to complete.

Whatever your experience, please help us by completing our survey: https://forms.office.com/r/Xb4DiK1NbU

The survey is open until Thursday 20 October.

For more information on the Call for Evidence see:
https://committees.parliament.uk/work/6931/introducing-integrated-care-systems/

For an explanation of Integrated Care Systems see:
https://www.kingsfund.org.uk/publications/integrated-care-systems-explained

If you want more information or want to add anything not covered in the survey, please email consultation@nnpcf.org.uk

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
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

Voices of England’s missing children – a response

The report claims to be the voices of England’s missing children, yet would appear to be based upon a limited deep dive.

We have listened to voices of other families where the child, if asked, would have communicated a vastly different picture.

It is troubling the Commissioner based these findings on such a small sample of children.

Page 5: “I have spoken to children who feel that their school has saved their lives”.  We have heard from families and have direct experience indicating that the opposite of this statement is true.

One parent said:

“Despite a diagnosis, a Statement of Education in place and being part of a SEN unit attached to mainstream, my child experienced exclusions for their behaviours. Autistic flight, fight, freeze behaviours which were not understood. At reintegration each time, they were expected to apologise and not repeat the behaviour. Without any change or self-reflection from the school staff. This resulted in my child losing their self-esteem and becoming extremely anxious about everything. They expressed that they wanted to die.”

The inference in the report is that children are unsafe outside of school. That really isn’t the case for some children. School based anxiety is on the increase with notable absences on Emotional Based School Avoidance. The report reflects on children being traumatised – either from home situations or from recent COVID measures. However, there is no recognition within this report that sometimes the school environment causes this trauma and that some children feel/are safer at home.

“My child has really struggled with anxiety throughout the pandemic. The past few years have seen an increase in OCD behaviours. They will still insist on wearing a mask, using hand sanitiser, wiping surfaces, still counting when washing hands etc. The anxiety has become too intense for them to cope, even where they have a school that understands them and with teachers my child trusts. Sadly, my child has not been able to transition back into school and we are all faced with ceasing the placement and having home based education, being the only place they feel safe.”

Ambition 1.

Ask, Listen, Communicate: decisions about children’s education need to be made with children, their families, and other adults in their lives.

We agree with the ambition statement but believe that this is severely let down by the first bullet point:

We do not need schools to ‘obsess’ with attendance. Some schools already do this, and it becomes borderline discrimination with measures such as requiring 100% attendance to go to the ball, prom, outings etc. Some of our children have medical conditions which impact attendance. Others may need to have an attendance plan with an intervention of staggered starts or part time attendance. This is especially true for those who are struggling to re-engage post lockdown. There is absolutely nothing wrong with a staged planned intervention like this, providing this is a temporary measure that works at the child’s pace and is not being used to unlawfully exclude/suspend.

It would have been worth the commissioner putting a reminder in bullet point three that schools have a duty to ensure their policies do not disadvantage/discriminate for those with protected characteristics, inc. SEND – in other words, making policies accessible should be about the actual content of those attendance & behaviour policies, not just accessibility of reading those documents.

Ambition 2

Meet children where they are: all children receive support in school, through families of schools.

‘Children’s voices need to be at the heart of these reviews and our response to the Government’s SEND Green Paper will do just that.’  

We feel that this is a lofty claim. We were not aware that the Children’s commissioner had conducted a SEND review consultation with our/any children. Indeed, page 30 indicates this is still to occur: “The Commissioner will bring the voices of children to the heart of the SEND reforms, by carrying out further research with children and young people to seek their views on the consultation and the proposed measures.”

The bullet point that recommends the SEND green paper is implemented fully is also curious. The green paper is still out for consultation. It ought to be anticipated there might be challenges to its recommendations that may lead to changes post consultation. Otherwise, the exercise should not be called a consultation.

The green paper is lacking detail in many areas on how the proposals will be implemented. It seeks to amend the Children & Families Act without first bringing in the desired accountability that most stakeholders are asking for.

With the above in mind, it is premature to be stating the proposals ought to be implemented fully.

Ambition 3

Exclusion as a trigger for intervention: children should receive a fantastic education, regardless of setting, always and receive targeted support following exclusion or suspension.

“…too often the children we spoke with had not received any intervention or support to prevent further exclusions happening in the future or to make sure that exclusion from school didn’t mean exclusion from education altogether.”

We agree that intervention or support from schools is often lacking. However, the emphasis throughout this report appears to be around changing the child. Little to no consideration has been included around how schools need to self-reflect on their own part in the antecedence to a suspension or exclusion.

For example, questions like ‘might there be a need for staff training to understand & support SEND?’ and ‘maybe there are environmental impacts on the child (sensory processing difficulties) – is there a better way to educate & include the child?’ should be considered.

Without thinking about these, the school staff will be setting the child up for repeated internal exclusion or fixed term suspension which, in turn, may lead to permanent exclusion. Each and every one of these sanctions impacts on the child and can cause harm.

“Where schools saw an exclusion as a moment for intervention and the reasoning behind decisions was explained to the young person and parents, children felt more supported and able to reflect on their behaviour and reengage with their education.”

Exclusion should only ever be used as the last resort. We have heard from some families who have experience of suspension/exclusion, where they did not perceive that any or all preventative measures had been taken. They did not feel that the sanction was fair nor were the family supported. The system is set up in a way that means families often feel powerless to challenge decisions made by schools. They can see little value in doing so and many would rather try working with the school to improve inclusion than challenge them, which they fear would worsen the situation.

“When a child is removed from the classroom, whether through internal exclusion, suspension, permanent exclusion, a managed move, or implementation of a ‘part time timetable’, an assessment of what support or intervention might be needed is undertaken and that support be implemented quickly to limit the time out of education”

In reference to this bullet point, such support should already be common practice and, as stated above, if schools reflect upon the support needs of their pupils early on, sanctions may not be necessary. This bullet does seem to suggest a “closing the stable door”-style approach.

“AP needs to be to consistently be an integral part of the wider education system so that children can transition smoothly into and out of this provision. All AP should be high quality with a focus on outcomes – we need a race to the top rather than minimum standards, building on some of the great practice already out there.”

This bullet point is really concerning. It would appear to suggest a ‘revolving door’ approach, almost using alternative provision as a correction facility. Many with SEND struggle with transitions, even from classroom to classroom.

There are some high-quality APs who offer the low impact environment that helps some SEND pupils to flourish. It should not be seen that they are ‘turning the child around’; rather, they are offering the right support and environment for the child to learn. Moving the child back into the original setting – without taking onboard where and why the AP worked well for the child – is highly likely to lead to failure. Repeated movements in and out of AP will have a negative impact upon a child and their anxiety. In fact, we have heard from families in the past who wanted to name the AP as their school of choice.

“Where a child with a social worker is excluded, be it temporarily or permanently, they should be in AP from the first day, so that no child where there is aa safeguarding vulnerability is not in school. we should consider naming schools within CIN plans”

Regarding this final bullet point under ambition three, it is a concern that the implication here is the pupil with a social worker would not be safe at home. Many children who have a social worker also have a loving and safe home, foster home etc. Having a social worker does not necessarily mean there are safeguarding concerns. Looked after children are more likely to move regularly from school settings, each move will have an impact. Any suspension/exclusion should be treated in the same way as other families rather than add yet another provision into the mix. 

What may have been more helpful is to highlight that many looked after children also have SEND which can often be overshadowed by their looked after status. Where a suspension/exclusion is given to a looked after pupil, it would be helpful to ensure there is a reflection upon possible SEND and review of support in place. Indeed, this should be the approach for all suspended/excluded pupils.

Ambition 4.

Letting children be children: no child should feel that they need to miss school to support or care for their family

Attendance is not the only area that can be impacted by caring and not all carers have responsibilities, although may still need support. Siblings of disabled children are considered young carers. The stresses and limitations that a disabled child can place on family life can negatively impact a child.

We agree that identification and appropriate support/understanding should be in place. Not all would qualify for section 17 targeted support however, we would make a further recommendation that schools recognise the impact on siblings of SEND youngsters and how this might look in the school setting. E.g., sleep may be disrupted, access to family days out might be limited, family finances lower etc. A sibling may have to miss school trips because the family budget may be stretched due to supporting SEND. This can be the case even if families are not on the lowest income. Sleep deprivation will impact learning, so even if a pupil is attending school, they might not be attentive. Some siblings will struggle to complete homework with their SEND siblings around.

Trips, homework, wellbeing etc are important considerations when ensuring children do not miss out on their education.

Ambition 5.

Attendance is everyone’s business: school leaders have a relentless focus on attendance and work together with LAs to ensure children are supported to be in school and to attend regularly

As mentioned earlier, attendance needs to be supported with a holistic view. Attendance alone does not equate to a child being fully included and ready to learn.

We do not agree that Ofsted should make attendance a top priority in its inspection framework. Rather, we would recommend that Ofsted look to see how inclusive the school environment and staff are.

When inspecting, they should look at those with low attendance to access what support is in place and if this is appropriate. E.g., a SEND child with heightened anxiety may need a gentle approach to physical attendance at school, led by their pace. This does not mean the child, by not attending, misses schoolwork. A hybrid solution might be the answer.

Likewise, we would like Ofsted to inspect inclusion and the school’s practices. Each situation should be viewed on its own merits with the focus being on whether the approach is leading to desired educational outcomes for the individual.

We welcome the team around the school idea, to assist schools in delivering the necessary support.

Ambition 6.

No more ‘known unknowns’: lack of information should no longer be the reason why children are not receiving a suitable education.

We welcome the unique identifier as this will help highlight a pupil’s journey through the school system. There could be better data available to track ‘excluding schools’ or pick up where a pupil is regularly changing settings.

The way forward

We welcome the need to have a plan in place to support pupils who are struggling to return to school, however, this must be worked at the child’s pace. An aim for the beginning of September is ideal but it must be recognised that trying to enforce a beginning of September start could be counterproductive. Attendance plans need to be individualised and the appropriate support in place.

“We also need to make sure that professionals working with children know what they can do to help, from supporting families to identify a suitable school place, to using available funds to purchase uniforms.”

SEND families would welcome support to find a suitable school place as opposed to the impasse that often occurs. Sadly, all too often the professionals are looking at costs rather than child’s needs when securing placements. The number of tribunals that fall in favour of the parental preference evidence this.

We also know that many SEND youngsters do not even have a placement secured for September. We would like professionals to be prioritising that situation.

‘Now, after the pandemic.

Covid infections remain within the community (currently looking to be rising) and therefore some SEND pupils, and their families are at risk, or they perceive a risk. These families need support to find the right solution and their views should be respected. A child’s mental health is as important as their physical health. Children have experienced great uncertainty and upheaval over the past couple of years. Some will have been hugely impacted by all this as the rise in those seeking mental health services evidence.

We would like to learn more about the proposed campaign of engagement for this summer, including how SEND families will be included, listened to and supported.

“Over the course of six weeks in February and March, the team spoke to nearly 500 people including over 300 children, over 40 parents and carers and around 100 professionals in LAs, health, schools and family hubs”

Whilst we welcome the deep dive, we are concerned that the report recommendations have been based upon the statistically small number of views sought. The commissioner did also reflect upon the ‘Big Ask’ survey, which captured many pupil voices. However, we suspect there were few disengaged families represented in that survey.

SEND families will often report a very different picture of the school experience for their SEND youngster than they do for non SEND children. The SEND system is fractured which is why there was a SEND review. We do not feel this attendance report truly captures the barriers our families face, yet it is SEND families who are statistically more likely to be excluded, suspended, experience poor inclusion or struggle with attendance.

We would like a separation to distinguish those who are choosing to home educate as a preference and those who have no other suitable option. Provided the home educated child can be seen to be safe and progressing with education, those families opting for this style of education should be afforded a light touch from services.

Conversely, those who feel that home education is their only option need to be listened to and offered appropriate support. That may mean the child continues to be educated from home as the point for successfully integrating into the school community has passed. These families have the experience to share which should be used to reshape services and support so that other children do not also follow the same pathway. i.e. the systems need to learn from their mistakes.

“As was clear from The Big Ask, and in our focus groups the vast majority of children view school as a positive space, and a place to learn and grow. 3 Sadly, the team also spoke to some children who have not had a positive experience in education or who felt let down by a fractured system.”

Those falling into the majority who see school as a positive place are also likely to be those without attendance or inclusion difficulties. When seeking to address a problem it is best to address those experiencing the problem. The focus should really have been on looking at those who ‘have not had a positive experience in education or who felt let down by a fractured system’, even if these are in the minority.

The way the report is set out may lead some to only read the precis of the six recommendations. In the part where those recommendations are expanded under ‘Six ambitions to account for every child’, there is a more balanced approach.

We welcome the recommendation to truly involve and listen to pupils and their parents. This needs to be done at the earliest possible point, well before sanctions are considered. Regarding SEN pupils, both the pupil and their parents should be an integral part of the Assess, Plan, Do, Review cycle. They should also be allowed to share what a reasonable adjustment might look like. Have a move away from the mantra of ‘if we do that for you, it will be unfair on others’. A reminder of equality duties might also be beneficial.

“It envisions a system where every child that experiences changes to their education journey (through suspension, a managed move or exclusion) is communicated with and understands what this means for them.”

As already detailed above, there needs to be much better communication ahead of any sanction, with pupils’ and parents’ views informing this. Sanctions really do need to be considered carefully as just one suspension can cause harm to the pupil. Even internal exclusion can set the child apart from their peers and disadvantage relationships, self-esteem etc. This is not about letting pupils get away unsanctioned, it is about careful consideration on how to support pupils away from sanctions being necessary.

“In the interviews and focus groups, it was clear that many children who had experienced an exclusion, suspension, managed move or move to a part-time timetable or AP did not understand the reason behind the school’s decisions”

This should never be the case for suspensions or exclusions if the process is followed correctly. It’s more likely that families do not agree with the reasons given for exclusion/suspension, or that they feel a sense of unfairness (even discrimination) on how the sanction has been applied. Most notable is the lack of consideration on what led up to the sanction and the impact of others’ actions/inactions.

One parent said:

“My child had a diagnosis of autism and was attending a unit provision attached to a mainstream school. Often, they were triggered into a meltdown because support/teaching staff placed demands on my child at a point where they were clearly struggling. Staff would state they never saw it coming, even though other SEN pupils had noticed (remarked upon) my child’s raised anxiety. Where a meltdown resulted in my child hitting out or pushing people away, fixed term suspension would follow. This was made worse by my child being asked to promise not to repeat their behaviours. A cycle of increased anxiety ensued”

Parents appreciate that actions have consequences but feel frustrated when a child is set up to fail in the way outlined above. An autistic child should not be made to promise ‘not to have a meltdown’, which is out of their control. What should happen is a reflection on how the school staff might better support a child to prevent the meltdown. This includes supporting the child to recognise their own rising anxiety and allow support strategies they can use to help calm them.

As one parent said:

‘It’s like pulling a pin out of a grenade, throwing it and then berating the grenade for exploding’

We welcome the NHS Autism in Schools project in helping promote better understanding of autism. This needs to be supported with the same level of understanding as those with physical needs

“Schools used a variety of different rules and rewards to deal with attendance. Children (at an outstanding secondary) for example, told us that their school would reward children with 100% attendance with being able to jump the lunch queue, and with an iPad at the end of the year.”

This approach places SEND children at a disadvantage, setting unachievable goals with no chance to have a reward. Also, attendance does not equate to attentiveness or being in a condition to learn.

“The stress of just being in the building, with all the noise, smells along with unpredictable behaviours of others exhausts my child. They have little reserve for learning as well”

We welcome that you noted how some children felt about school attendance policies, rewards & fines. We would like it to be recognised that rewards for full attendance may make a child feel absence is wrong and something to be punished or avoided at all costs.

The North Shore Academy initiative to share good practice on what has worked well regarding improving attendance sounds promising, as do the examples of a worry box and the opportunities to talk. We ask that the models of good practice are holistic and look at how each approach has improved a child’s experiences/outcomes. It would be damaging to share models which only served to bring attendance numbers up, without necessarily improving inclusion. This is especially the case with 100% rewards

“A website, ‘Every Minute Counts’, has been created and will soon be launched, to demonstrate the concept of a national attendance resource. The website will offer case studies written by schools, and other stakeholders, who are particularly effective in managing attendance in challenging circumstances.”

We understand this is a pilot with intention of sharing widely across schools. We would ask that before this is done, the NNPCF and other SEND groups are included in reviewing the website and case studies. This should hopefully help avoid sharing attendance practices that might negatively impact on SEND families. We would welcome the opportunity to speak with the commissioner on this.

The report has heard from LAs that the key is about building relationships:

 “The secret to building trusting relationships with children and families was clearly reliant on the professional discretion and commitment of the individual staff members.”

We wholeheartedly agree on this, however, were disappointed that the commissioner went on to have a narrow focus on this being achieved solely through attendance officers. This ethos should be developed across school staff.

“For example, even during the pandemic, many inclusion managers worked with families to pick up and drive children to and from school”

Whilst this example of commitment is laudable, it should be recognised that many of the attendance issues run far deeper than transporting to school.

Quote from one parent:

“My child became anxious about being within the school building. We tried driving to the school gates but each time it was like a cloud had come over them. My child would become rigid with fear, crying out, pulling their own hair at the distress of just entering the building”

Having an adult within the school who the child trusts helps, but this is not automatic through a job role. i.e. a child will feel more comfortable sharing with a person of their choosing. This may be the office staff, a teacher, a caretaker or even the head teacher. An attendance officer role might be helpful too, but this would not guarantee they can build the relationships needed.

“Children and their families need to be able to understand the attendance guidance which is currently only aimed at LAs and school staff. The Children’s Commissioner has committed to working with the DfE to produce a child friendly version of this guidance so that children are equally able to access this information. A child-friendly version will also support greater access to parents with additional needs.”

We welcome any guidance coming out to be accessible, including Easy Read. Certainly, any documentation intended for children to access should be in an accessible format. Whilst a child friendly format may ‘…support greater access to parents with additional needs.’ We would recommend that other SEND accessibility needs are considered. This should be done in coproduction with families.

Understanding the attendance rules is not enough in itself to make a difference e.g., families with school refusers often are aware of the rules but that does not mean they can apply them.

“My child wants to go to school but once there, just cannot cope with the environment. My child knows what the rules are and the prospect of sanctions adds to their anxiety, but none of that overrides their fear of being in school”

“Make all attendance policy documents child friendly. Schools should produce their own tailored children’s version of key attendance policies that families, children and young people agree with and understand. This can include video content as well as written policies. Policies could be co-created and updated with students and their families. DfE should also produce accessible parent and children’s versions of attendance guidance documents”

We agree that school policies should be co-created with families and tailored so all parties agree with the content. This should be wider than attendance policies i.e. include uniform, rewards & sanctions, behaviour policies. This is not an exhaustive list. Also, any policy needs to be viewed to see if it meets statutory obligations around those with protected characteristics, in SEND.

“Attendance should be prioritised in the ‘Parent Pledge’, announced in the Schools White Paper alongside current proposed topics, such as the quality of teaching, and the focus on reading and writing.”

We do not see why attendance needs to be included in this pledge. The White Paper pledge is around ensuring children who fall behind in maths and English are picked up, quality teaching is embedded etc. Attendance and behaviour do not in themselves ensure educational attainment or quality teaching are in place. Whilst attendance is important, we do not how this sits as a priority with the pledge.

“Many children felt that there wasn’t always good understanding of their individual needs within schools, and many parents and carers told us about a lack of provision and services in their local areas and their struggle to access the right support for their children.”

It was good to see that the commissioner had picked this message up, along with messaging around mental health needs and how the pandemic has exacerbated existing issues. However, the recommendations are slanted towards a perception that school is the best place to be.

“School as a nexus of support. In The Big Ask children told us that they want to receive support in school, be it mental health support, SEND support, bullying support or safeguarding. We have seen that children thrive at schools that provide holistic support that is built around genuine understanding of children’s individual needs”

Quote from a parent:

“Prior to the pandemic my child always struggled to keep things together in school. Despite being in an understanding & nurturing environment, my child found it hard to cope with school based anxiety. During lockdown my child thrived with online working, making educational progress and producing probably their best work yet. However, the pandemic broke my child and anxiety around being back in the school setting has proved too hard to bare leading to attendance issues that were never seen before. Clearly, an online/hybrid solution might be the best way forward”

“Many schools and LAs have felt alone in having to deal with a growing crisis, in some cases experiencing multiple suicide attempts per week and have called for more investment in NHS mental health care, both in terms of early help, specialist children’s mental health provision and Tier 4 mental health beds.”

We agree that there needs to be more investment into mental health services along with support for schools in helping pupils facing these issues. The recent NHS led Autism in Schools project shows great promise in helping develop that early support and understanding within schools, which in turn will help this situation. As well as considering autism, there needs to be better understanding of what has driven the decline in mental health. There must be recognition that for some of these the MH decline has been due to pressures around attainment (perceived or real).

We are alarmed at the mention of schools and LA’s calling for more tier 4 beds. This is counter to the NHS Long Term Plan. We would urge that schools & LAs are helped to understand the impact of tier 4 admission and how this can often be counterproductive and/or inappropriate. The autism in schools project was in response to the evidence that many of those inappropriate long term stays had a back history of not getting the right support and understanding in schools. Furthermore, we want to see interventions focused on the earliest possible point, not leaving support until the crisis.  Our recommendation would be to treat autism support and understanding in schools as a priority. This will not resolve all the mental health, behaviour or attendance issues but would go a long way towards reducing these.

“The Commissioner will continue to research what children need, to inform the open consultation on the Mental Health and wellbeing plan.”

We would welcome including the voices of SEND families in the commissioner’s further research.

“Supporting staff to support SEND students. All teachers are teachers of children with additional needs, and it is vital that they receive the support and training to do this effectively. By locating professionals such as Education Psychologists, Emotional Learning Support Assistants, and Speech and Language Therapists within schools or a family of schools, this increases teachers’ and pupils’ access to this support in an immediate way that embeds this additional professional expertise within the school’s existing education offer.”

This recommendation would be very welcome and could be further enhanced with compulsory continual professional development for all school staff on SEND. Regular refresher training would also help.

“The Commissioner will bring the voices of children to the heart of the SEND reforms, by carrying out further research with children and young people to seek their views on the consultation and the proposed measures.”

We would be happy to help link the Commissioner with SEND families to increase reach.

“Any form of exclusion, including internal exclusion, is an urgent signal that further intervention is needed. All children who are excluded or suspended should have their needs assessed, and a plan should be put in place for those needs to be met.”

We agree there needs to be an assessment of needs and a plan post exclusion to support the child. However, it is rare to reach that point without any forewarning. Support plans ought to be looked at as a preventative measure rather than wait for exclusion/seclusion/suspension to occur. There is also a real need to fully assess if there might be a training need to successfully deliver an intervention. As stated earlier in our response, there needs to be proper assessment/reflection before such sanctions (the A part of the ABC antecedent, behaviour & consequence approach is often missing yet the most important consideration).

Finally, there must be a plan is in place for how the child will be supported to access their learning and transition back into the classroom. No part-time timetable or AP placement should be considered a permanent solution.”

There should only ever be interventions that have a plan for assessing their impact and with a view to the next step. However, we believe this should not necessarily be a return to the classroom. There needs to be an assessment of what has worked, why it has worked and how can this be maintained if a child returns to the classroom. Remember it could be the support around a child that needs changing rather than the child.

DfE should explore further guidance on the assessment of needs of children who have been excluded. This would help ensure exclusion becomes a trigger for a package of support around the child”

Please consider rephrasing this and ask that:

“DfE should explore further guidance on the assessment of needs of children who are at risk of being excluded. This would help ensure a package of support can be in place around the child to prevent incidents becoming a trigger for exclusion.”

Remember exclusion should be the last resort.

“Improve research on the impact of caring on young people to inform policy. The Children’s Commissioner’s Independent Family Review will enhance the research and information available on the needs of young carers and their families to inform policy decisions.”

We would like to offer to help the Commissioner fully explore the impacts on siblings of a child with SEND, which can affect attendance even where the sibling is not in an active caring role. See earlier for more on this.

“In recent years, there has been a dramatic increase in the number of children in elective home education (EHE), from 60,544 registered home educated children in England in 2019 to 81,200 in October 2021.”

The recommendations went on to consider how to better capture the data on numbers missing from school (not necessarily missing an education). We would recommend a review on why there has been such an increase in EHE and also to create a system that better distinguishes those who are successfully receiving an elective home education and those who are at home because there are no other viable alternatives.

“Of course, relying on existing data systems does nothing to find the children who are missing from the data altogether. These children are often the most vulnerable, such as those who have been trafficked into the country, those in families who have migrated illegally, children in families who are classed as ‘no recourse to public funds, and those living with families who do not want their children known to the system. No LA within the Audit had identified a solution to finding these children”

A common identifier would be useful to help track children. A one-time register of those electing to home educate would give the numbers – beyond this point, there should be a soft-touch approach to monitoring. As the Commissioner has noted, there is no obvious practical solution to capturing the data of those who are not already known to services. Scrutiny of attendance for home education beyond a one-time register will still not help you pick up the ‘missing children’.

Addressing attendance codes. The DfE should conduct a review of the application of attendance codes at a school level, with a view to providing further guidance to schools on how these should be used.”

We would welcome clearer guidance for schools on how to correctly use attendance codes. We would also welcome guidance that children who have medical appointments or who are sick are not penalised in terms of ‘100% attendance’ (i.e. as an adult people would still receive pay for hospital/sick leave). There are two things to consider here. The first is the capturing of multiple sick absences to help inform if more support is needed. The other consideration is to ensure that schools do not discriminate against a child who has had multiple medical interventions when it comes to attendance awards. Maybe it should be seen as 100% of achievable attendance?

We would also welcome the government taking a more holistic look at children’s health services so that medical appointments can be better scheduled to avoid overlap with school hours.

One parent said:

“The clinic supporting my child only operates between 10 and 12, Monday to Friday. A half-hour appointment in the middle of the school day impacts the whole day.”

“As a first step, this is the moment to start looking forward to September and have a plan in place for every child who has not yet returned to school or is attending inconsistently. If a child doesn’t attend on the first day of term it is much harder for them to re-engage.”

We would like the DfE to prioritise making sure that all children have a school placement to attend in September (or other arrangements that have been agreed, e.g., EOTAS, EHE etc.). We have heard from several SEND families who are still without a placement.

We would also like the DfE to provide schools with guidance on supporting those who are out of school to return at a pace that is right for them ( embracing the ethos of the Children and Families Act by acting in a ‘child-centred way’).

“It is paramount that we work together as an alliance to ensure that the whole system is working at pace to prepare for the start of autumn term so that every child is supported to start, and stay in, school”

We would appreciate agencies working at speed to address the placement issues and to secure appropriate support. It is paramount that school pupils are not made to feel under pressure purely to meet attendance targets and that the pace of return is guided by them.

“Schools should identify where they can improve their approach to attendance in preparation for September. This could be through improving family engagement over the summer appointing an attendance worker or improving their relationships with the LA and other community services in preparation for September.”

We cannot see how schools will realistically be able to engage with families over the summer, nor how doing this would improve relationships. Consideration for dedicated staff such as an attendance worker and improving relationships with the LA are welcome – however, as stated earlier, child relationships need time to develop with an adult of their choosing (this may not be the attendance officer).

“Social workers should be considering good school attendance as a key outcome metric and working to identify potential barriers to attendance for children in their care.”

Attendance in itself is not an outcome. However, we welcome greater joined up working across social care, health, education and the wider partners.

Finally, we recognise that the recommendations in this report are for all children, not just those with SEND. We would recommend that all ideas on attendance and behaviour are first viewed through the lens of those with SEND, as often that provides solutions that work more widely. We would welcome a meeting with the Commissioner to discuss our response in more detail.

Categories
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.

https://www.surveymonkey.co.uk/r/XJDWLW3

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

The survey is open until 23 June 2022.

Categories
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.

Categories
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:

https://us06web.zoom.us/meeting/register/tZUkc-2vrDopHdRMCCc73dx_tDaFZrcUEnW6

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