We need a fair deal for carers – End Social Care Disgrace

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“Lift the cloak of invisibility and deafening silence and encourage your friends, families and communities to talk constructively about how to develop a system that works for the many not the few.”

By Jane Caygill, End Social Care Disgrace

Join John McDonnell and a range of interesting speakers at a public meeting organised by End Social Care Disgrace (ESCaD), campaigning for a ‘National Care Support and Independent Living Service’ (NaCSILS) on Monday 20th March to ‘Lift the Lid’ on the needs of and estimated 11 million unpaid carers who do not have a true voice in the UK. 

We will be discussing uprating Carers Allowance and the benefits of formal respite packages amongst other vital issues.

Lift the cloak of invisibility and deafening silence and encourage your friends, families and communities to talk constructively about how to develop a system that works for the many not the few.  You may not be a carer today but you could be tomorrow!

We look forward to seeing you.

The seven demands from ESCaD will give us a voice:

1. The Government shall have responsibility for and duty to provide a National Care, Support and Independent Living Service (NaCSILS), adopting into English Law Articles from the United Nations Convention on the rights of disabled people that establish choice and control, dignity and respect at the heart of person-centred planning. The rights as understood within the UNCRPD transfer across to older people as well.

2. This will be fully funded through government investment and progressive taxation, free at the point of need and fully available to everyone living in this country.

3. Publicly provided and publicly accountable. 

The NaCSILS will have overall responsibility for publicly provided residential homes and service providers and, where appropriate, for the supervision of not-for-profit organisations and user- led cooperatives funded through grants allocated by the NaCSILS. A long-term strategy would place an emphasis on de-institutionalisation and community- based independent living. All provision will deliver to NaCSILS national standards. There will be no place for profiteering and the market in social care will be brought to an end.

4. Mandated nationally, locally delivered

The Government will be responsible for developing within the principles of co-production, a nationally mandated set of services that will be democratically run, designed and delivered locally. Local partnerships would be led by stakeholders who are delivering, monitoring, referring to or receiving supported services or budgets, eg. organisations representing disabled people, older people, people who use other services and care and support workers, in partnership with Local Authorities and the NHS.

5. Identify and address needs of informal carers, family and friends providing personal support.

 The NaCSILS will ensure that there is a comprehensive level of support freeing up family members from personal and/or social support tasks so that the needs of those offering informal support, eg. family and friends, are acknowledged in ways which value each person’s  lifestyles, interests, and contributions.

6. National NaCSILS employee strategy fit for purpose.

The NaCSILS’ standards for independent and supported living will be underpinned by care and support staff or personal assistants who have appropriate training, qualifications, career structure, pay and conditions to reflect the skills required to provide support services worthy of a decent society.

7. Support the formation of a taskforce on independent and supported living with a meaningful influence, led by user controlled groups of people who require  independent living support, from all demographic backgrounds and regions. This would also make recommendations  to address wider changes in public policy.


  • “A Fair Deal for Carers Now – End Social Care Disgrace” takes place online on Monday March 20th. Register here.
  • You can find out more about the campaign for a National Care Support and Independent Living Service on Facebook and Twitter.
Featured image: End Social Care Disgrace members and supporters showing solidarity with NHS staff at the march in London on March 11th, 2023. Photo credit: National Care, Support and Independent Living Service

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