RECLAIM SOCIAL CARE GREATER MANCHESTER – WRITTEN EVIDENCE (ASC0121)

I am secretary of Reclaim Social Care Greater Manchester which is a group comprising people from different trade unions and pensioner groups set up to campaign for improvements to the social care system. A few of us have direct experience of working in the social care sector, some have been unpaid carers for family members and all of us recognise that we are highly likely to require some support for our daily lives at a point in the future.

We were set up following leafletting and talking to members of the public about the inadequacies of the social care system for Dignity Action Day in 2019. Most people we spoke to were unaware that social care had to be paid for, that there was a huge amount of unmet need and one person recounted his difficulties trying to get support for a family member. We decided that we had to do something to raise awareness of the issues and consequently your call for evidence on removing the invisibility of adult social care is extremely welcome.

Reclaim Social Care Greater Manchester also supports the aims of the National Care, Support and Independent Living (NaCSILS) campaign group and groups campaigning to remove charging for social care. We believe that the social care and independent living service must meet the needs of users, care workers and unpaid carers and it is currently failing all of them. I hope the responses to the Committee’s questions below can help move to that. My response does not cover all questions.

The Invisibility of adult social care and its consequences

1. One of the fundamental challenges facing adult social care is that it is ‘invisible’. Do you agree? What do you think explains this?

This is certainly the case. There are a number of explanations.

1. Many people in receipt of Adult Social Care are elderly and/or face significant mental or physical health challenges which requires most, if not all, of their attention to manage. Due to the lack of funding and low staffing levels in social care it can take all of a carer’s energy to illicit responses from care services. This often leaves them with limited resources for advocacy or policy engagement beyond trying to cater to their own immediate needs.
2. It has been described as the ‘Cinderella service’,[1] historically dependent on resourcing from personal, family, and charitable rather than statutory resources. Indeed, for much of our history, society ‘preferred’ institutionalisation or segregation of disabled people (especially those with mental health or learning disabilities), so that care was provided far from support networks, and away from public gaze. When some of these institutions, such as Calderstones Hospital, closed it was done with little support for those leaving their care. I worked in the DWP at the time of the closure of Calderstones and recall staff were advised of this but not of what specific support to give ex-residents who came into our offices. The report about the closure states what would be happening but not what support would be given. Calderstones Hospital: UK's only learning disability hospital to close after care review | ITV News
3. People often like to keep their personal care needs discrete. In social settings, and in a desire for autonomy, independence and personal dignity, Social care users may, for entirely understandable reasons, ‘collude’ in rendering invisible the importance of the social care or support they receive. A friend who pays for the support of carers to put her to bed each night to ease the pressure on her 87 year old husband states she is embarrassed about needing support and asking for help.
4. People only start to ‘see’ Adult Social Care when they need it (for themselves or family members) and this is exactly the time when they may be least able to negotiate its confusing maze-like systems.  By the time of adulthood, most people have used, and know how to access, public services such as schools or the health system, but ASC is nearly always provided in non-public buildings – in one’s own home, in residential homes, or in specialist centres such as day care settings etc. As such, the provision of such services is largely hidden from, and unknown to, the general public, their elected representatives, or the media.

2. What are the key changes that need to be made to reduce the invisibility of adult social care?

Again there are several changes that need to be made.

a.   The organisation of Adult Social Care provision in England is highly fragmented, largely privatised, and sometimes amounts to a ‘postcode lottery’ regarding Local Authority funding. The assessment process is difficult to navigate and the level of unmet need is great, but hard to quantify as shown in the recent report: https://www.adass.org.uk/waiting-for-care-adass-report-may-2022 The fragmentation needs to be removed and replaced by a National Care, Support and Independent Living Service which is free at the point of use, publicly funded, publicly provided and developed in real co-produced with service users, care workers and unpaid carers. It would nationally mandated; designed and delivered locally and democratically accountable. If it had the same status as the NHS the invisibility would be reduced.

b.   The career structure; training; working hours; conditions of service and pay for care workers must be given the value such key workers deserve. A minimum of £15 pound per hour; paid time off to train; return to sleep in shifts being paid at the going rate for the job rather than workers being subject to the Lords review which states they are not working when “asleep”; contracted hours to be advised and not changed without reasonable notice and the consent of the member of staff; an end to the exploitation of zero hours contracts; employers sick pay to replace statutory sick pay; trade union recognition for all staff working in the care sector and the value of care work to become recognised in the media, in schools and in all our communities.

c.    Unpaid carers need to be supported in their efforts. They must not be seen as an alternative to paid workers but an adjunct who should be recognised and supported. They need respite care; they need to be informed of their rights (to carers assessments, emergency contact systems etc); and they need signposting help to the appropriate care arrangements for the person/s they are assisting.  Much more coordination of efforts could be made between Councils/the NHS/GP surgeries etc. to signpost these carers to useful resources. Again, groups like Carers UK (www.carersuk.org), the Carers Trust (www.carers.org), and other such groups which specialise in this field will have practical and detailed policy proposals for the Inquiry.

4. How would you define the purpose of adult social care? How does the invisibility of adult social care get in the way of achieving this purpose?

a. The purpose of adult social care is to provide the support people need, regardless of their disability, to have the freedom, choice and control over their life to be able to achieve what they can, to enjoy their life, to feel fulfilled and to live with dignity and not despair. It is also to provide the same support to unpaid carers. The invisibility of social care perpetuates the despair and does little to promote dignity, choice and fulfilment of life. If people are unaware of the merits of working in social care and improvements are not made in their conditions of service due to invisibility they will not be drawn to it as a career and the horrendous shortfall in the workforce will not be addressed. This will mean that the minimum support to merely exist will be given rather than the maximum support to live life to the full.

b. Social care and independent living provision is woefully underfunded because it is invisible. The government’s recent proposals to raise funds by increasing national insurance contributions, and applying this to people aged 60 and over, will not meet the requirements of the current inadequate provision, let alone radically alter services. It will be used largely to support the NHS, which is at crisis point, and social care and support, which is also at crisis point, will not receive vital funds until 2023, if the current proposals are adhered to. Research published on 18 February 2022 by the Women’s Budget Group and the New Economics Foundation calculates the cost of all the reforms needed to create a high-quality, universal care service with well-paid care workers, and shows that the government’s new health and social care levy would only raise 6% of the funds needed to create such a service.

c. Care workers are already leaving in their droves to work for employers like Amazon where the pay and conditions of service are more favourable. The care sector is 105,000 staff short for maintaining the current system. For some time the lack of care and support for people fit to be discharged from hospital has meant they are not being allowed home. This is having a detrimental effect on those people but also on the patients who need to be admitted for hospital treatment.

6. What are the key challenges that people who draw on care and support and carers will face in the future, which are not factored into current assumptions related to the social care system, for example the fact that some families will age without children to care for them? How are these challenges different for younger and for older adults who draw on care? What should be done now to address them?

a. Many members of the public assume that social care users are all elderly and are unaware of the 1/3 of social care users who are of working age with a disability. The same general public is aware of the existence of residential social care, but unaware that much care is provided in people’s homes and is costly. Already families age without people to care for them. Also the healthy life expectancy varies with some areas like Blackpool having a healthy life expectancy of around 54 years of age. That means that older people needing support cannot always rely on family members.  

b. Those same members of the public are paying taxes and rates into a poor system of provision. They deserve to be better informed about how their money is being used, and to be assured that it is being used as effectively as possible. Their elected representatives cannot make appropriate policy decisions without understanding the field better. The media needs to be informed of, and report on, developments in the field to hold local and national politicians to account.

c. Any move to render more visible the provision of ASC must be pursued on a rights basis, respecting the autonomy and dignity of all involved, in which regard the UNCRPD and the UN Principles for Older People would be of assistance.[2] The British Institute for Human Rights provides some very useful training and guidance to the public sector regarding a rights based approach to, amongst other issues, health and social care (www.bihr.org.uk). There would be a value in a public education campaign to promote a better understanding of social care.

d. There are many groups who work closely with service users and which are in a position to effectively advocate with and for service users at the policy level.  Yet these same groups are having their funds cut and are having to focus on service provision rather than advocacy.  Covid has created new problems for the provision of adequate daycare services, and Councils are reducing their support for accessible venues etc. crucial for people with disabilities to socialise and organise.  Less advocacy means less visibility.

e. There are examples of good practice which need to be less invisible, such as Trafford Council buying back care homes which were threatened with closure; Salford Council devising a scheme to ensure those allowed to provide social care services in the borough meet criteria on employment rights, pay and conditions of service and trade union recognition; Hammersmith and Fulham which has scrapped charges for non-residential social care provision. Others need to be encouraged to follow suit and to work in true co-production with service users, care workers and unpaid carers.

Jacquie Hadfield

Secretary

Reclaim Social Care Greater Manchester

27 May 2022