A survey about finding and keeping Personal Assistants

The Local Government Association (LGA) and Think Local Act Personal (TLAP) have facilitated a survey which has been designed by people who use *Personal Assistants (PAs) for people who use PAs. The purpose of the survey is to find out about the challenges faced by people who use PAs since March 2020, particularly in recruiting (finding) and retaining (keeping) PAs.

The survey is aimed at all people who employ PAs, or who are supported by a self-employed PA, and who pay for the PA with a Direct Payment, Personal Budget or Personal Health budget or from their own money.

You can take a look at the questions first if you want to (see below) before completing the survey on line

This is the link to the survey HERE

The closing date is 23rd January 2022

You can download a copy of the questions that you would be asked here: Here

Read more here

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.