SHARED LIVES PLUS – WRITTEN SUBMISSION (ASC0052)

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?

“Invisibility” is not necessarily a base causal factor in the problems the social care sector faces – rather it is part of a dynamic in which it is partially caused by, and simultaneously affects, primary material challenges such as a lack of investment and a philosophy which prioritises the wellbeing of the people it serves.

Social care’s “invisibility” is manifest in the lack of awareness of the system at a political, media and societal level. Comparisons are often drawn with the NHS which enjoys much greater recognition among the public and media, and which dominates discussions of government policy and consequently demand for improvement.

Part of the lack of visibility for the sector of the whole is a lack of understanding about the positive effects it can have, and the diversity of the sector which contains models which would challenge the average perception of the sector.

A poignant example of this is Shared Lives, which accounts for less than 1% of social care provision, and yet is consistently rated as the highest-quality and safest form of social care.

“While people understand by experience what the health service does, very few people understand what adult social care is, how it works and why it matters”

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

• Raising awareness among politicians and public of the cohorts of people that social care serves – those with a need for support which doesn’t arise from a medical cause – which could ultimately, technically, include every citizen because everyone will need to draw on support when they reach a certain age. This will aid the realisation of the necessary size and strength of the social care sector.
• Raising awareness of the lesser-known, community-based and person-centred models such as Shared Lives (which outperforms all comparable models of care) can help drive greater demand for such services, helping both potential care workers and people with support needs realise that social care can lead to rich and fulfilling lives. Such measures could include:
• A national government-backed external communications marketing campaign, for example giving Shared Lives care a high priority across all DHSC communication campaigns, media activity, channels, events and opportunities to address the key awareness challenge

In areas where Shared Lives services have consistently grown, they have a ‘Shared Lives first’ principle for social workers to rule out Shared Lives care for a person, before making a referral.  We propose that central government recommends that Shared Lives must be considered first across all local authorities, resulting in awareness of the service, and stimulating the growth of referrals which are fundamental to unlocking growth. 

• Central government to recommend that Shared Lives carers to have parity with other social care staff and be included in local authority funding formulae to formally recognise the contribution that Shared Lives carers make. Some Shared Lives carers have not had a pay rise in over 10 years. If they were included in the same way that care home or domiciliary care staff are, that would support retention of Shared Lives carers (who have supported people 24/7 through lockdown, outside of their carer agreement).  
• Ensure that additional allocated funding aimed at supporting the social care workforce includes Shared Lives services and carers. For example the recent recruitment and retention funding in 2021, excluded Shared Lives carers working with independent schemes who deliver outsourced local authority services. There is an 6% drop in numbers over the last year due to day support and short breaks not re-starting, but they are a valued part of the adult social care workforce.  

3. How does this invisibility reflect the experience of social care for people who draw on care and support and their carers, and how is this experience different depending on the age range and particular circumstances of those who draw on care and support and their carers?

The invisibility manifests in a lower political will to invest and support the system properly, which leads to unmet needs and poor life outcomes for those with them.

Shared Lives care is a simple concept based on matching people who need and can give support to create thriving communities. In practice, it disrupts the social care, health and housing sectors, and as such, the systems its operate within are not set up or designed to enable it to scale up and often unintentionally limit their success

There are several ways in which the lack of recognition of services like Shared Lives amongst policy-makers creates specific practical problems for carers and those they support. There are 143 Shared Lives schemes across the UK – nearly one in every local authority, yet they are not well-publicised or funded, especially in comparison to traditional care homes, domiciliary care or child fostering. They struggle to maintain high awareness as councils struggle to retain a stable social worker workforce – an example of the ways in which a lack of visibility is caused by poor material conditions for the social care workforce.  

Shared Lives carers are too often not included in wider adult social care pay reviews. During the pandemic, lacking formal identification, they were ineligible for various relief schemes aimed at public servants.

There are various benefits issues both for people supported by Shared Lives, and for carers who support them – resulting ultimately from policies being written which made no explicit provision for Shared Lives, leading to disparate administration and interpretations of individual claims at a regional level. This leads to unfavourable outcomes for people in Shared Lives and takes up an immense amount of time of the care workforce.

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?

The purpose of adult social care should be to enable people to live good lives, in the places they want, doing the things they want with the people they want.

5. To what extent does the definition of the purpose of adult social care differ for younger and for older adults? How can future reform of the adult social care system best address these differences?

The purpose of adult social care should be to enable people of all ages and types of need to live good lives. Again, lack of visibility alongside proper funding and strategy leads to unmet needs and poor life outcomes for those with them.

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?

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7. How can other public services (such as the NHS) play their part in tackling the invisibility of adult social care?

The NHS and other services with a potentially great interface with people who could draw on social care can play a massive role in helping to refer them to social care services – particularly those lesser-known and innovative models which can be truly life-changing like Shared Lives. Investment in internal awareness among such services would help with this.

8. What effect has the COVID-19 pandemic had on adult social care?

Shared Lives carers have had to go above and beyond the call of duty and have supported people 24/7 through lockdown, beyond the terms of their carer agreement

Putting co-production at the heart of care

1. To what extent are the voices of people who draw on care and support and carers shaping the design and delivery of social care, irrespective of their age or circumstances? If these voices are not sufficiently heard, what is the impact of this on those who draw on care and support and carers?

The extent to which any public service affords the people it serves a meaningful stake in how it is planned or delivered is extremely low. Recently, arms-length bodies have increased the level of representation of people with lived experience in formal assemblies and events in the social care sector, but these are still isolated, episodic and unrepresentative at best, and tokenistic at worst.

2. It is often difficult for people who draw on care and support and carers to exercise choice and control if they do not know what good support looks like or what kinds of care and support might be available. What information and support could be helpful to address this and how could it be made available more easily?

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3.              We recognise that people with long-term conditions require different support at different points in their lives and that transitions, such as a change in health needs, moving from children to adult services, leaving education, starting a job or moving home, can be particularly challenging. Can you describe the key moments of transition from your experience? How have the formal processes worked during these periods of transition? What could or should have been in place to make these transition moments easier?

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3. What does truly co-produced care look like for younger and for older people with differing challenges and needs? Have you got any good examples to share?

Shared Lives is based around the equality and mutuality of people choosing to share their lives together. Both the Shared Lives carer and person supported have the final say in who they are matched with, after a careful matching process organised by the local Share Lives scheme which concentrates on the compatibility of peoples’ needs and strengths.

People taking part in shared living (Shared Lives and Homeshare) live as part of a family, home and community are often able to pursue the things they have always wanted to do – including fulfilling life-long ambitions, learning new skills, having new experiences and making new friends. They develop and exercise freedoms that we all deserve:

Freedom of expression

People in a supportive and loving Shared Lives household are free to speak their mind – and argue with their Shared Lives carer! Like Chris, who at first ‘used to say things because he thought (Ali) wanted to hear them.’

Right to peaceful enjoyment of possessions

Many people in Shared Lives households are proud of having their own space and the things to fill them, like Kurtis:  “I buy my own clothes because I became an adult. I buy all of them myself.”

Right to education

Shared Lives families are a wonderful platform for learning and growing as a person, like Michelle in Birmingham has: “The progress has been amazing. Michelle has learned a lot, personally and through her education. She’s really articulate and is great with numbers.”

Right to respect for family life

If a single word could sum Shared Lives up, it would probably be ‘relationships.’ But it’s not just about the relationship between Shared Lives carer and the person they support: 93% of people in Shared Lives felt that their social life had improved and 83% found it easier to have friends. Instead of acting as a replacement family for people being supported, often Shared Lives helps to improve relations with existing families, like Chris who said ‘Shared Lives helped me build more of a bridge with my dad.’

5.              How can we design care and support arrangements which work both for the person drawing on care and support and for those who care for them?

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6.              How can people who draw on care and support and carers both be involved in the planning of future services?

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26 May 2022

Shared Lives Plus www.sharedlivesplus.org.uk www.homeshareuk.org

Company number 4511426 Reg Charity number (England and Wales) 1095562 Reg Charity No (Scotland) SC042743