Covid isn’t over for SEND families – the NNPCF’s continuing work on the pandemic

Covid seems to be receding from the headlines but it remains a very real issue for families of children and young people with SEND. The NNPCF is continuing to do a lot of work ensuring that the impact of Covid on SEND families is understood and addressed by government and the NHS.

We wanted to take this opportunity to share two areas of work that the NNPCF steering group has been doing to share the experiences that parent carer forums are telling us about and the responses we are coproducing.

NNPCF co-chairs Tina Emery and Mrunal Sisodia sit on the Department for Education’s Covid 19 Vulnerable Children’s Board and Mrunal is a member of the Covid 19 Schools Recovery Advisory Group. We will continue to work on these boards and other local, regional and national meetings to ensure that the needs of SEND families are fully considered in the recovery from Covid.

Educational recovery from Covid 19

At these boards there has been detailed discussion of the impact of Covid 19 on SEND children – ranging from mental health, missed therapies and educational loss. SEND has featured prominently on the agenda’s for both groups and there is now emerging hard data to support the reports from parent carer forums that many families with SEND have been disproportionately impacted by Covid 19. Some of the measures that that have been coproduced:

  • Ensuring the push for reasonable adjustments to help support children with SEND back into school
  • The use of catch-up funding to support children with SEND including with therapy services and with their holistic wellbeing
  • How to support families with SEND who have opted for elective home education following the pandemic
  • The extent of learning loss for children with SEND whilst they were out of school
  • The concerns of families of children with complex needs about contracting covid 19

The vaccination of clinically vulnerable children

Parent carer forums have share strong feedback about continuing concerns about the roll-out of vaccines for clinically vulnerable children. These include confusion about how to get the vaccine and who is responsible for organising it, a lack of reasonable adjustments to enable SEND children to get the vaccine and anti-vaccination messages.

In October, PCFs responded to a call for evidence from the NNPCF which allowed us to give the Department for Education some strong messages about our concerns with the vaccination programme for clinically vulnerable children.

In our survey, forums told us:

Forums also shared some comments and case studies:

  • Most parent carers have been told that their child cannot be vaccinated until the schools do this. Some have managed to get a vaccine through the GP, most not and are still waiting.
  • CCGs have been very unclear themselves about whether or not 16 year olds could have the Pfizer vaccines, causing more delay.
  • Several CEV children were not identified by the NHS mass communication and have really struggled to get vaccinated.
  • Concerns have been raised about miscommunication between the GPs to the young people and families. The confusion has led to delays and frustrations amongst both parents and young people
  • Confusion about how to get the vaccine – GPs have referred to paediatricians who have referred back to GPs.
  • Vaccinations done by a mixture of GPs and Paediatricians. We haven’t heard parents report any issues in the last couple of weeks. Before that there were issues for some.
  • XXX area has an exceptional offer with GPs communicating well with parents and young people and offering venue choices, including coming out to people’s homes.
  • One forum described a case study in which a parent asked for the vaccine on the 16th August and got it on the 6th October after being passed between GP and 119 and various parts of the GP system several times. Needed over 20 phone calls, e-mails, letters to get this done.
  • Another case study: I was passed from pillar to post as GP denied all knowledge of JCVI letter. It has been very patchy with poor communication
  • Caser study: “Asked for a vaccination on 6th July. Been passed from school nurse to GP to paediatrician and back again. Still waiting.”

We shared these with the Department for Education who worked with NHSE to re-iterate the messages about delivery of vaccines to local areas and asked for renewed efforts to roll them out from local systems. The NHS has also convened a meeting next week to understand what they can do to improve uptake of vaccines for clinically vulnerable children that the NNPCF will be attending.