Building Personal Power

Baroness Jane Campbell and Julie Stansfield

jenny and julie

As the Covid-19 pandemic emerged the partners in the Be-Human movement knew that it would cause big problems for both people and the professionals supporting them. Over many years disabled and older people and those who have long term health conditions have set out to build our personal and collective power. This is an essential part of our political struggle for rights and resources. Supporting this can be a challenging process for professionals in the care and support field at the best of times. They often work within inflexible systems which struggle to see the individual person, their life and circumstances and respond appropriately.

As Covid emerged, following a roundtable with NHSE personalised Care Group and with support from Esmee Fairburn Foundation the partners decided to take action. They needed both to make sure that people’s experiences were recorded but also to offer help. This was because though it was vital to register experience to ensure post pandemic action, this would not be enough – they had do something to help, there and then.

The report published week describes what they did. Read more here

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. Read more here

You can report your experience here

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 local system leaders from NHS England and NHS Improvement in which it was stressed that advance 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.

Rights of Passage

Background As part of an ongoing programme of work to support colleagues across health and social care to maintain and champion personalised approaches to care and treatment, NHS England and NHS Improvement came together last week with a range of leading thinkers from the disabled rights movement, voluntary sector organisations, and specialist clinical directors. The current pandemic has brought into sharp focus the need for everyone, regardless of background or circumstance, to have the opportunity for their needs, wishes and preferences to be considered. This meeting was co-chaired by Baroness Jane Campbell and James Sanderson, Director of Personalised Care for the NHS, who have issued this summary statement. For further information email