Covid-19 NHS England

NNPCF concerns about the implementation of the NHS Long Term Plan

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

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

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

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

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

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

2. Disconnect between the regional implementation and the national team

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

3. Quality of coproduction is very varied.

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

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

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

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

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

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

4. Designated Clinical Officer / Medical Officer

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

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

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

5. Strain on services in the wake of the pandemic

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

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

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

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

Register in advance for this meeting:

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

Bills and legislations NHS England Social Care

Lords concludes examination of Health and Care Bill

The Health and Care Bill was introduced to Parliament in July 2021 and will place Integrated Care Systems (ICSs) on a statutory footing. ICSs are the structures through which NHS organisations, in partnership with local authorities, will take joint responsibility for improving the health and wellbeing of the population they serve, including children and young people.

As part of our policy work, the NNPCF are a member of the Health and Policy Influencing Group (HPIG). HPIG is leading the children’s sector’s activity on the Health and Care Bill, working with civil servants and parliamentarians to push for a greater focus on babies, children and young people in the legislation and supporting guidance.

The Government has made important commitments in Parliament that babies, children & young people will be an integral part of Health and Care Bill.

The Bill has now had its third reading, a chance to make sure the eventual law is both effective and workable.

The NNPCF welcomes the amendments tabled which include:

  • A requirement for Integrated Care Boards (ICBs) to create joint forward plans that include children and young people
  • Guidance that stipulates that ICBs must identify an executive lead for SEND and safeguarding and also appoint a children and young people’s executive lead
  • Guidance for Integrated Care partnerships strategies to specifically consider children and young people and for them to consult with CYP leaders and families.

These provisions support some of the requirements for joint planning across local areas outlined in the SEND Green Paper.

Covid-19 Department for Education NHS England

NNPCF input into planning for Omicron

You will all be aware that the omicron variant is now spreading in England. The NNPCF have been involved in several conversations with the Department for Education and NHS England about what this means for children and young people (CYP)with SEND.

Whilst we cannot predict the impact of omicron on services some very familiar topics have been discussed including wearing of masks, covid testing of children, supply of teachers and teaching assistants, remote education, blended learning, school rotas and the potential for full school closures.

Through these discussions we have been emphasising some key points:

· The need to coproduce any solutions with families – no blanket solutions and policies should be implemented and services should ensure the particular needs of CYP with SEND and their families are understood.

· The need to make reasonable adjustments for CYP with SEND to ensure that they can continue to access services and education

Whilst the government have stated that schools will only be closed in a national lockdown as a last resort, we must recognise the risk that with widespread omicron infections, some individual schools may need to close because of staff not being available either because of illness or the need to isolate

You can find the latest DfE guidance here, much of it has been updated this week: Guidance for schools: coronavirus (COVID-19) – GOV.UK (

At the same time, NHS leaders have issued a letter to NHS trusts and commissioners. You will see point 4 makes specific reference to learning disability and autism services. We have also raised concerns with both NHSE and the DfE that the vaccination drive may lead to health services for CYP with SEND being diverted to the vaccination effort.

Please keep in touch with your NNPCF steering group member to feed back what is happening in your local area. We rely upon your feedback to both to ensure we are representing your views and also to alert the DfE and NHSE to real issues in your areas.

NHS England

Putting Children and Young People with SEND at the Heart of the Health and Care Bill

As part of our Consultation and Policy work, this week Kay Moore (Consultation & Policy Lead) and Jacqui Watt (Participation Lead) attended the All Parliamentary Group for Children (APPG).

The NNPCF are a member of the Health and Policy Influencing Group (HPIG) which seeks to champion the needs of babies, children and young people (0-25) in the health service. 

The NNPCF welcome the Government’s focus on integrated services including the proposals within the Health & Care Bill to place Integrated Care Systems (ICS) on a statutory footing.  However, we have concerns that the bill does not do enough to bring the benefits of integrated working to children and families, and especially to those with special educational needs and disabilities (SEND).

With the Health & Care Bill having recently entered the House of Lords, and second reading due to take place on Tuesday 7 December, this event provided an important opportunity to explore what good Integrated Care Systems look like for babies, children and young people, including those with SEND.

The event which was chaired by Tim Loughton MP and Baroness Tyler explored:

  • The challenges in the current system
  • What does good integrated care look like

Edward Argar MP, Minister for Health and Social Care, Simon Kenny, National Clinical Director for CYP, NHSE and Dames Rachel de Sousa, Children’s Commissioner for England heard how vital it is that ICSs deliver improved health and social care outcomes for all children, including those with SEND.

There has been some progress as the Minister for Health, Edward Argar MP, has recognised the importance of focusing on children and families in the ICS structures and has committed that the Government would develop bespoke guidance for ICS on meeting the needs of babies, children and young people.

For more information please click here.

consultations NHS England

The Draft Core Capabilities Framework for the Transition of Young People into Adult Services in England-national consultation


The Framework articulates the core capabilities describing the knowledge, skills and behaviours required by all healthcare staff working with young people who are transitioning to adult services. Currently there is no national framework that addresses this need.

This Framework is part of a wider programme of work and will build upon and be complementary to previous and current work undertaken by NHS England and Improvement (NHSE/I) and the Burdett National Transition Nursing Network. It will support this ongoing work of the need for the successful transition of young people between children’s and adult services as identified by the NHS Long Term Plan.

The current draft capabilities have been developed by a national steering group of experts as well as young people and parents. We are going out to wider consultation on the capabilities themselves which will form the key part of the Framework document. The Framework will also describe the context and background. 

The development of a Core Capabilities Framework will provide the health sector with a starting point to identify education and training currently available, as well as identifying any gaps. In the future this will assist the application of a consistent approach to training for the successful transition of young people between children’s and adult services.  It will be applicable to both clinical and non-clinical staff across all levels of roles in the workforce.

Whether you are a healthcare member of staff, young person, parent or carer your views are very important to the development of the Framework and thank you for taking the time to complete this survey.

The survey will be live from Monday 12th July until Sunday 22nd August 2021.

Link to more information and the survey:

Children and Young Person’s (CYP) Transformation Programme Team

Medical DirectorateNHS England & NHS Improvement

NHS England NNPCF work Parent Carer Forums

Autism Schools Project

The Autism schools Project is being rolled out across the country over 2021/22 period. This project was one of the Children and Young People Accelerator Projects run in North Cumbria and the North East and is now going out to the rest of the country.

The Infographic accompanying the project, which highlights how parent carer forums can be involved, can be viewed here.

The full project report can be viewed here.

NHS England NNPCF work

Joint letter to the Secretary of State for Health and Social Care

Key Sector leaders have written a letter to the Secretary of State on the Health & Care Bill which outlines key concerns, asks for greater engagement with the sector and calls for the shortcomings in the bill to be addressed to ensure the needs of children and young people are met.

NHS England

An update on the NHS Long Term Plan

The NHS Long Term plan was published in January this year. The plan contains many goals that are both welcome and necessary to the lives of children and young people with special educational needs and disabilities (SEND). For example:

  • Funding for children and young people’s mental health services to grow faster than both overall NHS funding and total mental health spending.
  • Improvements around autism diagnosis
  • All children and young people with a learning disability, autism or both with the most complex needs to have a designated keyworker by 2023/24

Since its publication, the NNPCF have been involved in numerous conversations with members of the senior NHS England leadership to ensure that the SEND agenda is given a high priority and that the voice of parent-carers is heard in decision making at both a national and a local level.

Many of the details of the governance and implementation of the plan are still in development but some important aspects have been confirmed:

  • A new children and young people’s stakeholder council is being set up. The purpose of this group is to provide oversight, accountability and governance for those aspects of the long term plan that relate to children and young people. NNPCF co-chair, Mrunal Sisodia, will be sitting on the stakeholder council. This group as complementary to the SEND system leadership board that has been set up by the Department for Education and at which the NNPCF also have a place.
  • A new NHS Children and Young People’s transformation board will be responsible for the delivery of the long term plan for children and young people. This board has met once already and is made up of NHS project managers and leaders. NHS leaders are still in the process of agreeing how parents will be represented on this group, the NNPCF are a part of these conversations.
  • There will be ten workstreams reporting into this board. They are: Keeping CYP well; Workforce; Data and Digital; Integrated Models of Care; Improving Quality; Voice and Experience; Mental Health; Cancer, Learning Disability and Autism; SEND.
  • The boards for these workstreams are in the process of being formed. We can confirm that the NNPCF are represented on the Learning Disability and Autism and the SEND programmes. We are also exploring the right engagement for the NNPCF on the Workforce, Mental Health and Integrated Models of Care workstreams.
  • The plan will be driven through a model of national policy setting, regional support and enablement and local implementation. We have re-iterated the need for local clinical commissioning groups and Integrated Care Systems to work with local parent carer forums.