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NNPCF NNPCF Steering Group NNPCF work

New Steering Group member for the North East

We would like to welcome Jilly Russell, from Cumbria PCF (SENDAC) to the North East representative role.

Of her appointment Jilly said ”I’m really excited and pleased to be joining the fantastic team already at NNPCF and glad to represent Cumbria and the North East as their steering group member.

We all got involved for the same reason and it is great to share that passion with a group of such lovely people! I’m excited to bring some fresh and exciting new ideas to the plate and hopefully my experiences over the past few years with my own two daughters will really support me in this new position.

I can’t wait to meet as many of you all as possible, whether it be in person or virtually and am always happy to speak to anyone who wants to reach out, my email inbox is always open!”

We would like to thank Jo Gilliland for all her hard work and commitment to the North East Regional Representative role. We all wish her the best of luck in her new role with NHSE in the North East.

Jo said ”I have enjoyed my time as the NNPCF SG Member representing the North East & Cumbria region.  We have made great strides in developing the region and have a great regional team, I wish Jilly the best of luck when she comes into role representing a fantastic group of 13 parent carer forums.  

I will be working across the NENC ICS in my new position and look forward to continuing to work in co-production with the PCF network.”

Jilly is currently shadowing Jo and will be in post fully in January.

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Department for Education Government Minister for children and families NNPCF NNPCF work

New Children and Families Minister

Our NNPCF Cochairs meet with new Children and Families Minister

10 November 2022

On Monday, NNPCF cochairs Tina and Mrunal met with the newly appointed Undersecretary of State for Children, Families and Wellbeing, Clare Coutinho.

This meeting took place before Ministerial portfolios were officially announced – an indication of the importance of the NNPCF in the work being done by the Department for Education.

The Minister stated that she was very passionate about SEND and that the SEND agenda, along with the Independent Review into Children’s Social Care would be her biggest priority. At this early stage, she was unable to provide a detailed update on the immediate next steps for the SEND and AP Green Paper and the Schools Bill, she promised to keep the NNPCF informed and understood the interest in these items.

This was a short, introductory meeting and the Minister promised to continue to work with the NNPCF and parent carer forums. Tina and Mrunal invited the Minister to attend the national conference in Bristol on 28 February and to meet with the NNPCF board. We will keep you informed of further contact.

You can read more about Clare Coutinho, the new Parliamentary Under Secretary of State Minister for Children, Families and Wellbeing on the government website.

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Government NNPCF NNPCF work

Specialist workforce

We’re proud to sign a new open letter to the Government on the specialist workforce 📬

We’ve signed the letter alongside over 110 other charities, royal colleges, professional bodies, professional associations, trade unions, parents and carers and others who want the very best for children and young people, including those with special educational needs and disabilities (SEND).

A wide range of specialist professionals play a huge role in the development of many young people – including by providing direct support, identifying needs early, and supporting teachers to develop their knowledge and skills.

But while the need for specialists is increasing, insufficient numbers are being trained to meet demand. Many are failing to be retained, and many are leaving the public sector altogether.

This must change.

We are calling on the Government to use their response to the SEND Review to address gaps in the specialist workforce and ensure there will be sufficient specialist professionals to help children – now and in the future.

#SENDInTheSpecialists

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Parent Carer Forums SEND Review

Case studies for the DfE SEND review team

The SEND review team has asked us to collect information from parent carers on the following subjects

The information with be anonymised when submitted to the team.

This is a case study of parental experience if your child has been in residential settings out of their community and you are about to embark or have brought your child back to their local community: https://forms.office.com/r/A3GDjfnXbQ

This case study is if your child doesn’t have an EHCP, and their needs are not being met or they are struggling in their educational setting. https://forms.office.com/r/Kks9BpB9Mx

Please complete this study if your child’s needs are not being met or they are struggling because of covid: https://forms.office.com/r/3Urd5fXLWL

You can complete this study if there are Issues with school transport that is affecting your child’s attendance at school or other educational setting: https://forms.office.com/r/wAMjbuKt4F

We would like to hear from you if you have taken your local authority to tribunal for any placement issues: https://forms.office.com/r/D1JY4dnbsL

Please complete this case study if your child has been admitted to or is at risk of being admitted to hospital because of their poor mental health: https://forms.office.com/r/AKAQFCDsxa

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NNPCF Steering Group NNPCF work Parent Carer Forums

DfE Update – Delivering better value for SEND and Safety Valve

The NNPCF are engaged in many streams of work with the Department for Education.  

As well as the longer-term changes like the SEND Green Paper and Schools’ Bill, we have been emphasising the need for work that changes things here and now for SEND families – we cannot wait years for new legislation.  

One of the workstreams is the Delivering Better Value in SEND (DBVS) which looks at the local area, with a focus on what services the local authority is providing and where. It looks at how well the local authority are meeting the needs of the families and where the gaps are. It focuses on the inefficiencies within the local area systems and try to get the local area function better.  

In doing so, it will influence the high needs deficit, as often they are running at a high overspend, with very little outcome for the families that they money should be supporting. 

Guidance for this intervention work has been issued and can be seen here 

Safety Valve 

Safety Valve is dealing with the top 20 local authorities who have the highest deficit. Work on this has been ongoing since 2020-21. The programme supports local authorities through a process with financial and SEND expert advisers. Together, local authorities set out proposals to the Department for Education (DfE), setting out how quickly they will reform their services to run them sustainably. 

We do not sit on the board dealing with Safety Valve; however, we are receiving feedback from forums who are part of this programme, and it is very mixed messages of involvement. 

The DfE have released data on 14 out of the 20 local authorities, the data can be found here: https://bit.ly/3UTH7Q7 

Delivering Better Value for SEND 

DBVS is a programme designed to identify local and national opportunities to improve outcomes for children and young people with SEND. 

The programme is being led by Newton Europe and the Chartered Institute of Public Finance and Accountancy (CIPFA) https://bit.ly/3SNsfku and those leading on it say that in order to achieve the fundamental objective of improving outcomes it must:

  • have the child and young person at the centre of what they do 
  • listen to the challenges from the perspective of those receiving support from the system 
  • collaborate with LA’s that border, service partners and children and their families 
  • funding is a challenge and should be considered throughout the planning 

The programme focuses on two key approaches.  

Firstly, the short-term help, can they identify sustainable changes in each local authority, that can drive high quality outcomes for children and young people with SEND. 

Secondly, building an objective evidence base. The data will be then used to inform future policy, as well as to build and show best practice that can be shared nationally and inform future national programmes. 

PCFs should be part of this work and if you know work has begun and you have not had a conversation with the DBVS team, speak to your local authority contact. If conversations still have not happened after doing so, please speak to your DfE advisor and your NNPCF regional representative. 

55 local authorities have been approached for this programme. The programme is working in waves and tranches.  

Each local authority area has been designated a wave and tranches have been designated as to what workstream the local authority will be starting. 

The programme for tranche one has begun, with tranche two starting February 2023 and tranche three starting August 2023 

The whole programme will end April 2024. 

The tranches are set out below: 

Tranche 1 are the following local authority’s: 

Kensington & Chelsea, Southampton, Solihull, Dudley, Somerset, Hampshire, Stockton – on- Tees, Doncaster, Oxfordshire, Brent, BCP, Cheshire East, Bracknell Forest, South Tyneside, Cumbria, Suffolk, Stockport, NE Lincs, Bristol and Leicestershire. 

Tranche 2 are the following local authority’s: 

Newham, Sefton, East Riding Yorks, Wiltshire, Gloucestershire, Enfield, Redcar & Cleveland, Middlesborough, Hackney, Reading, West Sussex, Worcestershire, Windsor & Maidenhead, Oldham, Rochdale, Kingston-u-Hull, Rutland, Havering, Tameside and Swindon 

Tranche 3 are the following local authority’s: 

Tower Hamlets, Warwickshire, Durham, Thurrock, West Berkshire, Halton, Lewisham, Sunderland, Wirral, Birmingham, St.Helens, N.Yorkshire, Buckinghamshire, Cornwall and Central Bedfordshire. 

The work is set out in modules:  

Module 1 (baselines & forecasts) This is used to build a baseline and forecast.  

Module 2 (root cause diagnostics) is about diagnostics with detailed analysis, with cases being reviewed and deep dives. 

Module 3 (implementation planning) Ensuring that the LA can practically implement the suggested solutions to the root causes discovered in Module 2. 

Module 4 is titled transitions with an opportunity to apply for a grant at the end of the programme. This an opportunity for local authority’s to securing funding to deliver the plan. 

Each local authority should involve PCF’s and there will be a DBV Diagnostic set up pack available to you at the start of the conversations. This pack clearly sets out when each module will begin and end for you. 

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”.

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NNPCF NNPCF Management Team NNPCF work

Jo Gilliland to step down from NNPCF steering group to take up new role with NHS

Please join us in congratulating Jo Gilliland, our North East Steering Group member on being offered a new role working across the North East & North Cumbria Integrated Care System.  Jo will be strategic lead for the keyworking project in the North East and North Cumbria. This means Jo will continue to be at the heart of developing services for children and young people with SEND and builds on the work that she did with both the NNPCF and in her previous role within the NHS.

We will be sorry to see Jo leaving but we are always pleased when colleagues are able to build on their experience and further their careers outside the organisation, especially when they retain links with the SEND world.

Following her announcement Jo said, “Being part of the Parent Carer Forum network, locally, regionally & nationally has been an amazing experience, I have worked with some remarkable people and forged some incredible working relationships and friendships.  I hope to continue to watch the NNPCF & all PCF’s grow & continue their vital work for families, I am lucky enough that my new role will enable me to continue to work with the inspirational PCF’s in my region”

We will be starting the process to replace Jo over the next few weeks.

If you are interested in the role, you must be an active member of your forum in the North East region.

You can find the job description and application forms below:

NNPCF Job description- regional steering group member 09/2021

NNPCF Steering Group Application form

The deadline for applications is 31 October 2022

Interviews will take place the week commencing 7 November 2022

Categories
NNPCF NNPCF Steering Group Parent Carer Forums

New Steering Group member for London

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Despite only limited publicity we received dozens of responses. 

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

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

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

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

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

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

The lens approach to the findings are as follows: 

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

When asked

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

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

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

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

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

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

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

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

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

66% responded with school, the main points being: 

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

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

41% responded said school in their response.

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

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

Our final question asked about the needs of their child.

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

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

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

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

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

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

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

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

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

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

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

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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.’’