Lessons for marketing from housing with care research Jenny Pannell National Care Forum 6 February 2013

JRF-funded research on: Affordability of housing with care for self-funders Boundaries of roles and responsibilities in housing with care Interviews with around 100 leaseholders and tenants with high/increasing care/support needs; emphasis on quality of life and value for money Other studies including affordability of retirement housing (compared with other options eg staying put or residential care); & research by University of York on building supportive HWC communities

JRF outputs include: ‘Findings’ (4-page summaries) Full reports Affordability Guide Practice examples Conferences Articles & blogs Video/audio

Affordability – why it matters to self-funding residents “It is important that the quality is commensurate with price” “It is an all-inclusive package, so there are no hidden costs” “I think it is expensive and it’s the way they charge you for everything you get” “(Mother) can afford it and, for the peace of mind, it’s well worth the cost” “It is a much better deal than moving into a nursing or residential home”

Managing current and future uncertainties Can I afford to stay here? What if…… My (or my partner’s) care needs increase? The costs go up? My savings run out? My income goes down? Protective factors include: Strong financial position (especially pension) Family will provide? Social Services/welfare benefits will provide?

Marketing & affordability Different stages of decision-making: before moving in, living in HWC, exit issues Different issues for ‘lifestyle’ movers/careful planners or crisis movers, and owners or tenants The role of family and external advice How well do self-funders understand the initial and ongoing costs/affordability of living in HWC? The importance of welfare benefits and state help (including help with care/support costs) for self-funders – but who helps with this?

Advice and Information “We need a much more radical approach to helping people to plan their future housing and care requirements and helping them to understand better how they can pay for this”. (Local Authority Commissioner)

Marketing material and information from providers “Organisations provide information to help ‘set the scene’ of what people can expect... marketing material can overplay environments as vibrant retirement lifestyles for the fit and well, which submerges the experiences of people with high support needs, especially people living with dementia.” “Targeted information … and the use of positive language and images helps to give individuals the reassurance that housing with care can be a welcoming place for them... eg older LGBT people.” From University of York research

Aims of the Boundaries research What are the boundaries of roles & responsibilities in HWC and how does this impact on residents’ quality of life? How do the expectations of residents, family, providers, commissioners, regulators differ and how does this impact on quality of life? Can a rights-based approach empower residents? If so, how is this promoted? How do these issues vary across providers/ models (eg single or multiple provider/s)?

Gaps, Grey Areas & Quality of Life “Mostly all the staff here are excellent, but it can be difficult to get other types of help – I wanted to know who would put a plaster on my finger if I need it … “I am reluctant to seek outside help for something like changing light bulbs – there’s a bit of a ‘no mans land’ with these little things – they need to be done but it’s no one’s job.” “What I enjoyed most was the monthly outings that the staff arranged, it was nice to get out, but because we need to arrange this ourselves now it doesn’t happen and the support staff have said they are not allowed to do this for us, but I can’t see what harm this would do”.

Grey Areas impact on Quality of Life going without a service/ experiencing delays; unsure who to ask/ complain to/ who is accountable; asking others for favours or paying someone privately; rumours if unclear communication/ responsibility; impact on other residents’ QoL(eg anti-social behaviour, neighbour tensions if insufficient mediation/ intervention; loss of sense of community if social activities stop; poor relationships with staff/ reduced self-esteem if staff only task-focused, not people-focused (‘it’s not my job’); having to move out even if preference is to remain living in HWC until end of life.

Grey areas become gaps: where residents have very different needs (eg moving in); where tasks are small and therefore not prioritised by organisations (eg to develop shared protocols); when circumstances change suddenly/ temporarily (eg hospitalisation or relative unable to provide support); when resources are limited (no funding for eg activity co- ordinator/ handyman; or for preventative input/ more care); where external advocacy is needed (eg accessing aids and adaptations, making and chasing up health referrals); where professional perspectives on risks/safeguarding and gains to quality of life differ (eg end of life)

Who is the ‘Ringmaster’? Whose responsibility is it to help make sure everything is running smoothly for a resident (especially where they are vulnerable and/or confused)? Is there clarity on this? How do family and support workers share responsibility here?

Workforce and management: “We didn’t want sta ff hiding behind job descriptions and different governance regimes. We had to find a way of working together” Partnerships (external, eg social services, GPs) Commissioning: the role of local authorities Welfare benefits advice: “The rent is high and care is very expensive if you have to pay it all - I couldn’t do it” Resident involvement: “Tenants will talk more to other tenants so the Service Assessors have been able to get really honest feedback” Learning from research: Practice Examples to improve services

Contacts Publications available at Housing & Support Partnership