National Network of Parent Carer Forums C.I.C

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Latest NNPCF work on the COVID 19 crisis

April 9, 2020

This has been a difficult and worrying time for the whole community and families of children with SEND have faced increased challenges that are specific to their own circumstances.

The parent carer forum movement has responded with incredible composure and strength through this period. NNPCF steering group members have been overwhelmed by the stories of the work parent carer forums have been doing to keep their communities connected and in gathering information about their concerns and what is actually happening on the ground with our children and our lives.

As we have updated in the last two weeks, we have been in regular contact with the Department for Education, the Department for Health and Social Care and NHS England to share what we have heard from our member forums.

We wanted to draw your attention to the key messages that we have been conveying on behalf of families with SEND over the last week and give some feedback on the impact your work has had:

  • Last week, NNPCF co-chairs Tina Emery and Mrunal Sisodia wrote urgently to senior officials at the Department for Education expressing grave concerns that local areas were misinterpreting the powers granted to the Secretary of State for Education in the Coronavirus Act 2020 passed last week. We had heard disturbing stories of local areas suspending EHCP timelines, named school placements and annual review timetables. The Department for Education is clear that whilst the Secretary of State has powers to authorise such “easements”, they have not, as yet, been invoked and currently, all of the stipulations of the Children and Families Act 2014 remain in force.
  • We have also expressed the strongest concern to NHSE about the stories we have heard of some local health systems encouraging or asking people in care homes (including those with learning disabilities and / or autism) to complete “Do Not Resuscitate” (DNR) notices. We believe this is deplorable and unlawful. The whole sector has expressed their concern about this:
  • We have also asked NHSE to ensure the requirements of the Equalities Act 2010 to make reasonable adjustments are not forgotten for children and young people with SEND in this period. For example, in allowing more than one carer to accompany a young person when they are out and about, to enable children to accompany an adult when they are going shopping if there is no one else at home who can look after them and most importantly to ensure that people with SEND can be accompanied by an adult if they need to go to hospital. Local providers are developing local policies but we are urging NHSE to ensure that reasonable adjustments are made by all concerned from hospitals to the police. Some additional guidance has been issued that references the need to make reasonable adjustments for people with LD+A. See
  • We have spoken to both DfE and NHSE about the need for personal protective equipment for schools and care settings. Shortages are resulting in some settings refusing to take children who have personal care needs. Again, this is a well understood problem and many others across the sector have raised it. The DHSC have stated they are urgently working to address this through improving supply chains.

We will keep you updated.

In the midst of all the essential work you are doing, the NNPCF steering group would like to urge you all to stay safe and to try and get some sort of break (the best you can) over the Easter period.