Written evidence submitted by The National Network of Parent Carer Forums (NNPCF)
The National Network of Parent Carer Forums (NNPCF) is the independent, national voice of parent carer forums. We are run by parent carers with lived experience. The NNPCF is a representative organisation, consisting of up to 152 local parent carer forums at any time across England. Parent Carer Forums are pan disability. This means each parent carer forum includes parent carers from a range of backgrounds with a wide range of experiences in Health, Education and Social Care as their children have a wide range of conditions. We currently have approaching 100,000 members.
Our vision is for the best possible opportunities and futures for all children and young people with SEND and their families
Our mission is to deliver better outcomes for families living with special educational needs and disabilities (SEND). We aim to:
As a membership organisation, the NNPCF has based this evidence on a national survey of our parent carer forums. 29 parent carer forums responded to our survey.
We asked our forums to answer a series of questions to help inform this response on 2 main areas:
Parent and carer forums reported Integrated Care Systems are mostly being set up in a way that would not allow them to achieve their objectives, particularly in reference to children and young people with special educational needs. Parent and carer forums have observed little regard for tackling inequalities in health and health care for children and young people with special educational needs and disabilities. Parent and carer forums suggest there is little engagement with parents on how to tackle these inequalities, and where there is engagement, this is not being translated into improving healthcare for these children and young people.
Are ICBs being set up in a way to achieve their stated objectives?
In our survey, only 14% of parent carer forums report ICSs are being set up in a way to achieve their stated objectives. There is acknowledgement this is “difficult to say, as it’s still very early days”. However, some forums report ICSs are “not doing enough” and “we have very little visibility of what they are doing”. For one forum the set-up process has meant “delayed funding decisions and chaos in terms of who would engage in producing our WSOA” [written statement of action] and hence delayed improvements following a joint Ofsted CCG inspection. There is also a perception of “too much focus on data and data systems” and a “workforce crisis impacting hugely on the ability to make positive change”.
Are ICBs tackling inequalities in health outcomes achieved by provision of health services for children and young people with special educational needs?
In our survey, only18 % of parent carer forums believe their Integrated Care Board has regard to reducing inequalities in terms of health outcomes achieved by provision of health services for children and young people with special educational needs. 29% of parent carer forums report their Integrated Care Board does not have regard to reducing these inequalities. Those unsure is 51%. One forum noted differences regarding outcomes across the ICBs it works with, also expressing concern that data tracking does not support the measurement of the outcomes “I think that regard to outcomes varies across the footprint of the 3 ICBs. Within joint commissioning (WSOA) workstreams we have clear outcomes set for ASD ADHD pathways, SENDIASS, therapies, equipment, but the focus of these are lost and data does not support the specific measurement of the outcomes set”. The only forums mentioning outcomes as being measured were in reference to written statement of actions following joint Ofsted/CCG inspections. Many forums are still waiting to see if ideas will develop into action: “They are making the right noises on the Children’s and Young People’s workstream but whether any ideas will come to fruition will be the sticking point” and “Regard is not the same as action”.
Forums also express concern that Integrated Care Systems and Boards have no evidence of tackling inequalities for children and young people on forward plans, and therefore question whether ICBs are tackling these inequalities. “There is no mention of SEND in their delivery plan”, “The push for SEND priority is on the local boards but is not seen in the executive structures of the ICS”. One forum expressed concern over how leaders of ICBs regard inequalities for children and young people with special educational needs “No senior leaders in the ICB are even talking a narrative that implies they get this, let alone demonstrating it in their plans or actions”. Others report “We have had no contact with the ICB on this issue”.
Are ICBs tackling inequalities in experience of healthcare for children and young people with special educational needs?
In our survey, 21% of forums did not feel the ICB was aware of the needs of children and young people with special educational needs and were not seeking to improve their experiences of healthcare. Several stated this was because they had been given “no evidence to say otherwise”. Of those who answered “maybe” or “don’t know” (54%), some felt their ICB wanted to improve but were hindered by “recruitment and finances”. Others reported the ICB were aware of the needs and experiences but “making them a priority” is not observed in practice. Many respondents noted that parent carer forums (or other disabled families’ representations) did not have contact with their ICB, nor had their experiences of healthcare being asked for, suggesting ICBs are not consulting with parents to improve neither awareness of the needs nor experiences of children and young people with special educational needs. For those who did believe the ICB was aware of the needs of children and young people with special educational needs (21%), there were still significant concerns over turning awareness into action: “more health projects and engagement but not doing enough”, “they want to reduce waiting times but they’re not doing enough to make it a reality”, “I think there is awareness and desire to improve…any changes are very strategic and families are yet to feel the impact of the work. Families are reporting longer waiting times and increased difficulties in accessing the right services and provisions”. Only one respondent felt their Integrated Care System allowed a similar level of co-production to reduce inequalities in experience of health care for children and young people with special educational needs.
Are ICBs tackling inequalities in access to healthcare for children and young people with special educational needs?
32% of parent carer forums believe Integrated Care Boards are being set up in a way that will tackle inequalities access for children and young people with special educational needs. Specific examples of ways in which inequalities being tackled include “creating resources for children and young people with additional needs”. Another forum commented the ICB “are aware of inequalities and highlighted the need to improve for all, especially those with autism. They stated currently 11.5% of people with learning difficulties have an annual health check and their aim is to target this at 75%”.
However, 18% of respondents did not believe Integrated Care Systems are being set up in a way to tackle inequalities in access for children and young people with special educational needs, with 69% not able to say either way. This suggests measures may not be in place to tackle these inequalities in access, and any measures that are in place may not be being communicated effectively. Issues in reducing inequalities were reported to be related to the delivery of tangible action to reduce the inequalities: “Some individuals have spoken now at various events around SEND but the statements have not yet brought any action,” and “I feel each of the ICBs have regard, but are limited by capacity and workforce as opposed to financial constraints”. One forum reported children with special educational needs being unable to access healthcare because of their diagnosis “CAMHS will not touch a child with any sort of diagnosis as they are not a disability service”.
SUMMARY: Despite it being early days, parent carer forums predominantly report Integrated Care systems are not being set up in a way which will improve outcomes for children and young people with disabilities, nor will they reduce inequalities in healthcare outcomes, experience, or access. Although this may be due to a lack of engagement between parents and ICBs, parent carer forums also report concerns over a lack of vision from ICBs through their leadership and planning for improving outcomes for children and young people with special educational needs. ICBs do seem to have more regard for children and young people with special educational needs accessing healthcare, although this is still a low proportion and over two thirds of parent carer forums reporting ICBS do not have regard for improving access to healthcare for children and young people with special educational needs.
Few parent carer forums report being involved in the planning of comissioning arrangements by ICBs. Very few parent carer forums report being consulted on ICB forward plans.
Have you been involved (whether by being consulted or provided with information in other ways) with planning and commissioning arrangements by the ICB?
Only 21% parent carer forums report being involved in the planning of commissioning arrangements by the Integrated Care Board. One forum reports “we can’t even access exactly what our ICB is doing/planning, although we have asked our CCG contacts. “Co-production with health is at an all time low” others comment the have had “no contact with the ICB”. One parent carer forum reports having “joint commissioning arrangements across 3 ICBs for some aspects of SEND that primarily fall under the WSOA. We have not been consulted beyond an individual ICB” suggesting arrangements are variable even in close geographical areas. Others report they are “informed of the developments that have occurred without participation in the design”.
There are some examples of parent carer forums being involved in the planning of commissioning arrangements. “Calderdale parent carer forum has been invited to attend meetings by ICS Neurodiversity lead on issues such as resources, support, training for those on the assessment pathways”, “PCF across Yorkshire invited to be integral to autism and LD work stream teams. Sheffield, Doncaster and Rotherham PCFs commissioned to deliver peer support and bring lived experience to the centre”. However, these appear to be isolated examples.
Have you been consulted on the Integrated Care Board Forward Plans?
Only 7% of Parent Carer Forums report being consulted on Integrated Care Board forward plans: “We don’t receive any communication from the ICB only individual service leads but not strategically” and “We have been informed of the plans of the ICB and not consulted”. Others who have seen plans comment “Nothing disseminated that would indicate individuals or groups outside of health been heard”. Parent Carer Forums do not report being consulted on Integrated Care Board forward plans.
Do you feel parents and young people are represented and able to work strategically with the Integrated Care Systems?
50% of parent carer forums report parents and young people are not represented in the ICS. Only 21% report they feel represented. Reasons for this include structures in place “it’s not set up for any patient, parent carer forum, governor input”, “health still seem like they are not quite sure what’s going on yet”; parents not feeling their perspective is welcome: “they don’t listen to us as much as the professionals, ”they don’t want parents involved.”; and engagement feeling “tokenistic”, “we attend lots of meetings but they tend to be engagement rather than co-production”.
SUMMARY: Parent carer forums report difficulty in engaging meaningfully with their ICB. Few have been involved in commissioning arrangements, and even fewer report being consulted on forward plans. Where there has been consultation, this often feels like parent carer forums are being told what is happening and there is little evidence of engagement with parent carer forums being anything more than tokenistic. Although there are some examples of good practice in engagement, these appear to be isolated.
Parent carer forums would like to see more transparency from ICBs, not just in commissioning arrangements and forward plans, but in working together with parents to improve outcomes and reduce inequalities for children and young people with special educational needs. They would like engagement and consultation to be seeking the views of parent carers, rather than informing them what is going to happen. The NNPCF believe this is best done through co-production from the early stages with parent carer forums.
Parent carer forums report wanting to have more access to information from ICBs “We have very little visibility of what they are doing”, “We do not know how it is being set up”, “Feels like something behind a curtain, we keep getting trailers for, and we are waiting for a reveal.” Parent carer forums believe that by being more open and transparent this could improve outcomes for children and young people with special educational needs: “Meeting, like council committees, should be publicly available e.g shown via YouTube and minutes on www. A bit more transparency would improve accountability and lead to services that are more responsive”. More transparency and communication with forums would also increase engagement with parent carers: “Forums don’t always know which work streams affect our families as it’s so big. Communication with forums could be better on simply sharing this information”
Parent carer forums repeatedly expressed concern that ICBs see consultation as “updates or what may be coming (before it did)” rather than seeking parent views. ICBs often come to consult by “coming to us with preconceived ideas”. NNPCF members would rather see ideas that “are co-produced and co-designed with all stakeholders” rather than ideas that “have been put in place on the quiet behind doors that are certainly fairly closed to governors of hospital trusts and parent carer forums at least while all the major decisions are made and then they are coming to us way down the co-production ladder to 'co-produce' when it certainly seems more like informing (being done to) and at best consulting level involvement.”
Parent carer forums would like to see increased representation of parent carers within ICBs: “I think it’s vitally important that parent carers are represented on ICBs”, “I would like to see patient representatives on boards at all levels and if this is Healthwatch - they must step up a good amount to liaise with patient and public governors and parent carer forums”. They note this is vital for improving long term outcomes for children and young people with special educational needs: “Need more representation of gender, ethnicity and families. There needs to be more highlighted for the ever-growing amount of children and young people with SEND and how they can be supported to live a full and prosperous life themselves”. Some forums believe there “should be an expectation parent carer forums are involved” as this empowers our members to be represented at a local level.
The NNPCF believe that co-production with parents of children and young people with special educational needs from an early stage is vital for improving services, and the responses in our survey reflect a desire from our members to bring this into reality. A lack of co-production and a desire for this to happen was a large theme in answers in our survey. One forum believes “some performance indicators that measure engagement and participation might drive coproduction.” Others feel better understanding of parent carer forums would help drive co-production “Health generally don’t seem to understand what parent carer forums’s do, we’re seen the same as lived experience experts, rather than themes and solution focused.”
The NNPCF wants to see examples of good practice of engagement and co-production shared so health and health care outcomes for children and young people with disabilities can be improved and inequalities tackled. ICBs that are “really wanting to engage and co-produce with service users” could be examples of good practice so inspiring others to improve outcomes through engagement and co-production.
SUMMARY: Parents and carers are concerned a lack of meaningful engagement from ICBs with parents means ICBs are not able to effectively improve services and outcomes for children and young people with special educational needs. Our members want to see more transparency, and involvement with stakeholders at the beginning of a process through co-production, rather than informing them what is happening. Parent carer forums would like to see their profile raised within ICBs and an expectation that ICBs would work with them through co-production to improve outcomes for children and young people with special educational needs. The NNPCF would like to see more examples of co-production and the positive impact this has had on outcomes shared between ICBs to inspire them towards co-production.