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.
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