Support for organisations - our Community of Change
Resources, research and evaluation
We provide advice and support to help you know and understand your rights, find useful information on self-directed support and personalisation and be part of a National network of people helping each other.
Our Community of Change supports Local Authority Children's and Adult Services, Provider Services from both independent and voluntary sectors, Clinical Commissioning Groups, user led organisations, and Housing Providers.
Resources that you may find helpful, such as fact sheets, toolkits, presentations and template documents and reports from our research and evaluation
Record your experience of care and support during the Coronavirus pandemic
Register of COVID-19 experienceThe ‘Be Human’ movement want to make sure that the response to the Coronavirus crisis does not undermine the human rights of disabled people and people with long-term health conditions or our principles.
To these ends, we have set up a register to record the experiences of disabled people and people with long-term health conditions, their carers and family members, of getting health, social care services and treatment for Covid-19 during the period of the Pandemic and its aftermath. We want to learn from people’s experiences, both good and bad, and to help where we can if it is appropriate.
Advanced Care Planning – DNACPR – Statement from NHS England
NHS England and NHS Improvement, along with its many partners, are committed to ensuring the continued delivery of personalised care. However, they acknowledge there have been recent examples reported of where people’s wishes and preferences have not always been considered.
In response, on 1 April 2020 the British Medical Association (BMA), Care Provider Alliance (CPA), Care Quality Commission (CQC) and Royal College of General Practitioners (RCGP) issued a statement emphasising the importance of a personalised care plan. This was reiterated on 7 April 2020, in a letter to the local system leaders from NHS England and NHS Improvement in which it was stressed that advanced care planning is undertaken on an individual basis.
Disabled Children's Partnership published report on life in lockdown
In May, the Disabled Children's Partnership (DCP) reached out to over 4,000 families of disabled children to ask how they had been impacted by the lockdown. A report has now published with what they were told by the families which overwhelmingly shows that they felt locked out and abandoned by Government and by society, and are fearful for their own physical and mental health.
They told DCP that in 76% of cases, the vital care and support they relied on had stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock.
The top 3 concerns expressed are: the impact on children's behaviour and mental health; impact of children's friendships and managing home schooling; and what will happen if parents contract Covid-19.