co production – National Network of Parent Carer Forums C.I.C

Messages from the eight Local Area SEND inspection reports published July 2023

We have received feedback regarding the eight area’s who have been recently inspected under the new framework.

The report highlights that co production is crucial and lies at the heart of everything that is going well.

There are two evaluation criteria in the inspection handbook that relate to co-production:

Leaders actively engage and work with C&YP and families.

Children, young people and their families participate in decision-making about their individual plans and support. This includes access impartial information, advice and support to make informed choices about their future and support to understand rights.

Key messages include:

A strong voice of the children and young people (C&YP) and them being at the heart of decision making is a common characteristic of local areas that have achieved most favourable inspection outcome.

Generally inspection reports have commented positively about co-production at strategic and service levels although there have been a couple of references to engagement with children and young people being in the early stages.

Co-production at all levels.

Inspectors are looking for the voice of C&YP at all levels

Currently, how the voices of children and young people are heard and acted on at a strategic level is in its infancy. Area leaders have supported the development of the Shout Out for SEND (SOS) group, which is made up of a ‘small but mighty’ group of children and young people with SEND. However, their reach and impact are still growing.
The views of children and young people, and of parents and carers, are now being captured more systematically as part of the EHC planning and review processes. C&YP’s voices matter they take part in decision making. Most reported a trusted adult who listens and acts on views.

Co-production and the Local Area’s Leadership

No local area, apart from one, has this aspect of co-production as an area for improvement with most areas receiving positive comments

Co-production with parents and carers is a golden thread that weaves through new initiatives and service redesign. Leaders listen to and value the views of parents, carers, children, and young people.
The PCF are actively involved with many development projects. Leaders receive regular feedback from parents. They use this effectively when planning and evaluating services.
Strengthened work to engage C&YP and families to make improvements. The inclusion the PCF at a strategic level is central. Good evidence of true co-production. Leaders have developed roles for C&YP advocates and mentors for other C&YP to ensure their voices are heard.

Area leaders listen to and act on the views of parents and carers. For example, additional provision for young people with SEND was set up within an existing educational setting, following feedback from a parent group. Also, area leaders responded to concerns raised around transport by making relevant changes. Typically, parent groups believe that area leaders listen and respond to their views.

Co-production is a strength. It is embedded in the local culture and is based on a relationship of trust and respect. The voices of parents, carers, C&YP influence strategic development and the commissioning of services. Parent voice is well represented in various panels across the city when considering access to services for individual families. There are many examples of strategic and operational co-production that are working well, for example the Social Communication Resources across primary and secondary school, the school transport policy, and the strategic plan for SEND. All resources that are being developed for the Dynamic Support Register (DSR) have been co-produced.

Work between the partnership and the parent carer forum is making a strong contribution to improving the experiences of children and young people with SEND and their families.

Careful thought and planning enable children and young people with a vast range of needs to communicate and be involved in service review and transformation. For example, inspectors met a group of young people who influenced the design of a leisure centre to ensure better accessibility and inclusivity

Nottinghamshire’s area for improvement related to the need for leaders to gather a wider range of views of children and young people and their families so that they can use these views to inform their planning for, and evaluation of, SEND services. Inspectors also commented that work to engage C&YP was in its infancy

Co-production and individual plans

Positive examples identified by inspectors of how C&YP and their families are supported to engaged in their individual plans include:

Early help: Highly skilled family support workers know and understand children’s needs well. They act as advocates for C&YP, ensuring that their views inform the development of support plans.

Leaders make sure that young people receive effective advice and support as they enter adulthood. Practitioners, including social prescribers, ensure that young people are able to be active members of their community, accessing financial benefits, improving their independence skills and finding suitable accommodation to help them achieve good outcomes

The school’s well-being service gives advice to parents, carers and schools about how to meet the mental health needs of children and young people.

Young people generally receive effective careers education information, advice and guidance. This includes useful proactive support for those at risk of being NEET

Social workers act as useful advocates to get the children and young people they work with the help and support they need, including at points of transition into adult social care

Co-produced direct payment pathway where family support workers help families to manage and review their direct payment package. This means that families receive the right help without the need for social work intervention

Area leaders provide parents and carers with useful support and guidance when applying for a personal budget. This works particularly well in the children with disabilities service. However, some parents would value more services to spend their budget on and do not find the process straightforward.

Children and young people are supported to share their voices and opinions. Their voices are particularly well reflected across all EHCPs.

The Special Educational Needs and Disabilities Information Advice and Support Service, help parents and carers to navigate the local offer and access the right support in a timely way.

SENDIASS is highly valued by families. The service helps parents and carers receive useful advice and guidance. This helps families to successfully navigate the SEND system and reduces their anxieties.

The SEND Information and Advice Support Service (SENDIASS) provides an effective service supporting children and young people with SEND and their families. SENDIASS practitioners have taken a thoughtful approach to making their service both accessible and impartial. Parents, carers, children and young people do not need to wait for support from the SENDIASS team, as practitioners get in touch straight away.

The help and advice provided by SENDIASS is also highly valued.

Area of concern identified by the inspectors related to the provision information to children and young people to help them help make choices include:

Insufficient and unclear access to support and guidance and misunderstanding from families and practitioners of how placements in alternative provision are commissioned.

Many parents lack confidence in how well their children are being prepared for adult life because they do not know what support is available.

Some children in mainstream provision do not receive clear advice to prepare for moving to their next stages of education so they do not always get the support they require in a timely fashion.

Many C&YP are reliant on schools and families for social activities and to make friends. This is because they do not know what is available for them. This can leave some children and young people isolated.

Children and young people do not know enough about the clubs and facilities that are available for them to socialise with others out of school and during the school holidays.

Practitioners’ knowledge and expertise are insufficient to support and guide C&YP with SEND. A significant consequence of this is that the services of groups such as SENDIASS and PCF are in high demand. Although many highly regard these services, there is a limit to the level of support they can offer.

Parents, carers and professionals report problems with communication. Too often, professionals signpost parents and carers to other services. While this is enough for some families, other families struggle while they wait. A significant number of parents and carers who are waiting for their child to be assessed on the neurodevelopmental pathway reported that they are not updated often enough on wait times. This causes increased stress and worry.

Leaders do not promote personal health budgets well enough. This reduces the choice for parents and carers when they require bespoke packages of care.

The two recommended areas for improvement related to information and communication that need to be addressed in the local area’s updated strategic plan were:

The local area partnership should make sure that parents and carers and professionals receive clear and reliable information about how to access the range of support and services that are available.

Leaders across the partnership should establish effective communication across the partnership to improve the experiences for children and young people with SEND and their families.

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 7^th June.

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