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Thank you from the NNPCF steering group

July 24, 2020

A difficult time for parent carers and PCFs

The past four months have been a strange and difficult time. For families of children and young people with SEND, it has been even more difficult with many of our children more effected by lockdown and most of the services we rely on simply not available. The inability of many local areas to coproduce with families on EHCP risk assessments and coronavirus act easements and the lack of meaningful respite care during this period has meant that, despite our work, the experience for many families with SEND has been incredibly difficult.

However, we have been amazed but not surprised by the dedication and commitment of parent carer forums through this period. You have adapted to the new normal with creativity and agility – you have been running virtual coffee mornings, providing peer support to families and conducting surveys to understand and escalate concerns. Your work has enabled the NNPCF to continue to give clear messages to government and the NHS about the impact of Covid 19 and what they need to do differently. You can see our latest summary of the key messages here http://www.nnpcf.org.uk/wp-content/uploads/2020/07/NNPCF-C19-update-20200702.pdf)

Value of forums has been recognised

Your work and its value has been recognised by all concerned, including ministers (see http://www.nnpcf.org.uk/minister-vicky-ford-thanks-parent-carer-forums-for-their-work-in-the-covid-19-pandemic/).

During this period, NNPCF representatives have met with four different ministers on six separate occasions. In addition, the NNPCF has been invited to join key governmental and NHS boards including the Schools Recovery Advisory Group, the Covid 19 Vulnerable Children’s Board and the NHS England Children and Young People’s Stakeholder Council.

This has meant that we have been able to share your experiences with the highest levels of government.

Our voice has made an impact

Many of our representations have been taken on board and have formed a part of government policy and guidance. A few examples (from a long list) include:

  • Early on, we and other challenged the use of clinical frailty scales and “do not resuscitate” notices for people with disabilities.
  • We worked to get guidance on going out changed to accommodate the needs of those with SEND (e.g. being able to go out with more than one carer and more than once a day, exemptions from wearing face masks).
  • In the recently published school’s guidance, we inserted new language into the sections on behaviour, exclusions and attendance emphasising the need to coproduce solutions with families and to take a supportive, not punitive approach.
  • We ensured that the £1bn of catch up funding announced by the government could be spent on SEND services (such as SALT) and was not just restricted to academic tutoring.

There are still big issues to be resolved

Going forward, there remain major concerns ahead of the return to school and the full restoration of services:

  • Communication to parents has not yet explained clearly why and how it is safe for children to return to school.
  • We remain concerned that some schools will be taking a “hard line” approach to behaviour, attendance and exclusions that will prejudice children with SEND.
  • School transport remains a major concern for many families.
  • And the long term mental health and developmental impact of Covid 19 on our children has not yet been felt or understood.

We will keep working to address these.

Thank you

It has been a gruelling time for parent carer forums – doing what we do whilst caring for our families has been an immense effort. Thank you for your tireless and selfless work and although the work of PCFs never stops, please take a well earnt break over the summer. At the NNPCF, we will keep a watching brief on activity. September is likely to be a difficult time for our families and we will need to return, refreshed and ready to start all over again.

Enjoy your break and see you in September

The NNPCF steering group

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