User Research Summary Report

Improving the understanding of the cost of social care

Contents

• Background
• Executive summary
• Discovery research and findings
• Alpha research and findings

Background

The work

Adult social care described some challenges for users of the service related to paying for care and unexpected care costs.

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They were keen to understand more about their users experiences of unexpected care costs so they could better support people who need to pay for their care.

Our journey

This is our third exemplar service design project delivered as part of our commitment to the Local Digital Declaration.

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Our three member team is committed to drive our digital maturity through user centred design and working in the open.

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We continue to aim to learn from users and use these experiences to improve how we navigate our learning journey.

Executive Summary

Opportunities�(From Discovery)

Vision

• a service that supports people to make good choices about their care, based on accessible, consistent, easy to understand information and transparent processes

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Opportunities

• information provision for users entering the service
• help with understanding financial support eligibility
• electronic communication to keep users informed
• consistent conversations with users entering the service

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Prototype feedback�(From Alpha)

Discovery

Vision

We used an inception workshop based around dxw’s good questions to kick off a discovery to design our overall approach to research around our vision and outcomes for the discovery.

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Our (draft) vision for the discovery work was to

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• A service that supports people to make good choices about [paying for] their care, based on accessible, easy to understand information and a transparent process

Goals

Our goals for the Discovery were

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• costs of care are fully understood by care users and their families at the earliest opportunity
• staff are equipped to provide the correct information to people at the first possible opportunity
• streamlined end to end processes support and inform service users along the way
• we have the right information about [self-funding] service users to assess their contribution towards care

We spoke to council officers

We asked them to talk to us about

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• their role and involvement in the process
• about things that were difficult or frustrating
• where the most effort is spent?
• About their experiences of
• people thinking care is free for 6 weeks
• short notice discharges
• the impact of the new financial assessment tool

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We spoke to users

We talked to service users and people that supported them about

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• their understanding of social care charging
• how they found apply for help towards costs?
• how they may have accessed support in relation to applying for help?
• what their thoughts on contributing towards care were?

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What we found�from the Council perspective

• “Everything is so complicated. I know because I've been here a long time, but if you were new it would be really hard to understand”

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• We always advise people with complex finances to seek professional advice e.g. selling parents home

The rules around paying for care can be complicated for non-professionals

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• "I don't know how much care costs, or how much providers charge“

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• “People wouldn't agree to have their roof replaced with a clear knowledge of costs or at least a range but we can’t provide this for care costs”

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• “Care homes don't always tell people they accept on a self-financing rate they will charge a 3rd party top-up on top of council contribution.”

The costs of care are not clear

• We don't leave them with anything after the conversation about financing care costs

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• “We discuss finance with them but when they're in crisis they can't always listen well, and we have to throw a lot of information at them in one go”

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• "I know things have changed but when we gave people a leaflet they read it and asked questions“

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People don't always have a sufficient record of their conversations around finances

• People will accrue a debt whilst we're waiting for their financial assessment

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• “We can't charge until financial assessment are done. If people don't fill in straight away, they can end up with a bigger first bill”

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• “I don't know how much more we can hammer home the importance of the financial assessment in providing care”

Delays in completing financial assessments can lead to delays in sending out charges and larger initial bills

• “People say that care is free which isn't true”

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• “People often know that they may need to pay at some point but they often believe that they get six weeks free which isn't right”

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• “Care costs can be free for up to six weeks, it's often less than this and occasionally it can be longer, although no one complains about more free services”

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There's a potential myth to bust around care costs being free

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What we found�from the experience of users

Not everyone was sure the financial assessment correctly reflected their circumstances

For some the process was straightforward - "It made sense how they'd come to the figure"

Although there may be individuals with more complex circumstances – “I still don't think I filled it in properly, it was like they're not considering me as well. It wasn't asking is this money for you and your wife ... all the money you see in the bank statement is mine and [my husbands]"

More detail would allow people to check

This Photo by Unknown Author is licensed under CC BY

People don't understand how service costs are calculated

The cost of care is expensive - "Its a lot of money. We could live on it for a month, what he pays per week"

Transparency in showing cost elements would improve this

And people want to know what makes up these costs –

• "Never know how much the total cost of care is“
• "I have a basic understanding of the process, but not how the budgets are determined“
• "We were told he was allowed an allowance but it wasn't clear what this was for"

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Providing financial evidence is not easy and takes time

People understand evidence is needed - "I had to provide all the proof. I was happy to do it. It's necessary"

They may be ways to simplify what is needed

And they worked hard to find it – "It was really difficult to gather all of the information - things like marriage certificate, P60's from pensions, etc

Some queried if it was all necessary - "Do they need everything, e.g. wanting to see proof of ownership for the house, even though they've not had a mortgage for years. the deeds are with a solicitor, etc."

Online financial assessment works well for some

It provided exactly what they want - "the way it works now [using the online account] is ideal. The financial team has full visibility, I've got full visibility, it couldn't be any better"

Identifying ways to provide assistance would help

However they knew others would struggle - "I've done a lot of office work so I found it OK but I think my sister may have struggled to complete the assessment"

And they recognised that help was sometimes needed - "Anyone starting the process, it would be lovely if they could have someone to help people navigate that process, especially people not very good at computers"

Stress and worry make it difficult for people to recall what is said

The experience if often new - "Whenever I spoke to someone, I was learning something for the first time so I was trying to process that."

Being able to access a record of what is important might help

And emotionally draining - "Those first few months are a haze. I spent weeks in tears, it was so overwhelming"

And it impacts peoples ability to engage - "Spoken to a gentleman because on one occasion, concerning my husband in respite. Asked to fill out financial assessment, but I was ill myself at the time, so I told him I had forgotten”

People don’t always know what's happening

Things are sometimes not communicated - "I was told that a PA was going to be appointed but I didn't know that was in place until I saw it on the bill"

Keeping people informed would reduce confusion

And this can be frustrating - "Asked her ‘If I hadn't rang today, would anyone have let me know?’"

And this sometimes results in confusion - “Some communication from finance team to say while your dad is in respite, you will need to keep paying"

Getting specialist support depends upon knowing who to speak to

Where they spoke to the right person, the experience was good

• "Once I've been able to get through to a social worker, I've always had a good experience"
• "Financial team was very helpful"

We could be clearer on who to contact

However some struggled finding out who this is

• "I can need to speak to six people to find out where my mum is in the system"
• "Absolute nightmare because they swapped and changed social workers with her. You tell them everything and you never hear from them again"

Not all users know whether they qualify for help with care payments

Self-funders seemed clearer on their circumstances - "Any assets above £23,500 meant all self-funded"

A simple test may inform users

Those who may get support were less sure of the rules – “I wasn't aware of the financial limits before this but I am now - my mum doesn't have anything like those amounts"

And that they could reapply for support later - "Tell people don't wait until you get to £23,500 before you apply"

And that completing a financial assessment would tell them - "We didn't know that financial help was available until we applied"

This Photo by Unknown Author is licensed under CC BY-SA-NC

People with experience and knowledge know how to navigate the system

And it was recognised as advantageous - "My job helps a bit so I had a head start. I have contact with social workers, etc"

Accessible information about the process may help

Those without experience sometimes struggled

• "I came into the situation with no knowledge of what to do, where to look for information"
• "We'd have liked to retain the existing provider but the process didn't allow this to happen"

And a few said what would help them - "There's no easy sheet of information. No one page of information, especially on our website - maybe a flow chart even"

People who provide support used multiple sources to find what they needed

There wasn't a prominent primary source of information

• "Didn't know support was there. I just read in Alzheimer's magazine about personal budgets"
• "The information isn't all in once place so there's GOV.UK, the council's website and NHS etc."

Having a primary trusted source of information would address this

Many searched online but their expectations were not met

• "NLC website wasn't helpful to guide me around what funding was out there in our circumstances"
• "It would be helpful to have all the information brought together in one place online"

Findings we were less sure about

There was some evidence that there were findings about:

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• Difficulties for those providing support to stay involved in the care process
• Lack of awareness of flexibility within finance rules

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These are included here for interest however more research would be needed to confirm if these insights properly reflect peoples experiences.

People understand care isn't free

Most are happy to pay - "I don't mind paying [towards care] and I think my father should have the best care he can afford"

Clarity on local and national rules may overcome some of this

And only a few knew about legitimate ways to use assets - "We've paid his funeral costs in advance, so we don't need to worry about that"

Some were unhappy that savings could not be used as intended - "If you work hard and save money all your life you are penalised, that's my opinion"

And no-one mentioned how our local authority is more generous where it can be

People involved in care and support can find it difficult to be included

Some have prepared for the future - "Had PoA a few years ago. Mum now has dementia"

We can let them know the right way for them to stay involved

However not everyone can easily be involved or has a legally recognised care relationship

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• "It took a bit of managing as I live 200 miles away so I got lasting power of attorney"
• "Unofficially caring for mother in law"
• "I was nominated to look after my mum's finance"

What we recommended�opportunities for Alpha

Themes for Alpha

We synthesised our discovery findings from our interviews and desktop research to identify three themes for exploration in alpha

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• Information, Advice and Guidance
• Financial Assessments
• Processes, communication and training

Information, Advice and Guidance

• design an information pack suitable to leave with people when they enter the service and corresponding online versions

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• prototype different formats and scopes to test with users, to determine the most effective ones, e.g. leaflet vs. booklet

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• co-design content with ASC subject matter experts, graphic design and comms specialists

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• research with users to understand what questions they would like answers to

• experiment with different ways to help people understand the charging model and eligibility criteria for financial assistance

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• design a consistent conversation format and content for people coming into the service

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• ensure IAG content is suitable for staff, i.e. can be used as part of training, serves as a reference for them, contributes to consistency

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• learn about printing and production costs to assess cost vs. benefit

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Financial Assessments

• review Financial Assessment online tool (BetterCare) and paper form to look for ways to make it easier to understand and complete

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• review evidence requested to understand opportunities to streamline, avoid duplication or evidence from what we already know

• investigate options for providing further digital assistance facilities, e.g. community hub, telephone support

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• understand whether support can be provided by other teams, with training and guidance materials

Processes, communication and training

• look at opportunities for standardisation and increased frequency of communication between the service and it's clients

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• research and test appetite for use of electronic communication methods and automation to keep clients informed of progress

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• revisit existing online training for staff in financial assessment and support available

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• review, clarify and embed a standard process for how we manage the transition of clients between different teams and case managers

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• continue work to give every client an allocated case manager, to provide a single point of contact and an agreed back up option to account for staff absence

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Alpha

Revised vision

We held an inception workshop to create a project roadmap for alpha with shared vision and goals iterated from Discovery.

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We revised our vision for Alpha to

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• A service that supports people to make good choices about their care, based on accessible, consistent, easy to understand information and transparent processes

Goals

Our goals for the Alpha were

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• Costs of care are fully understood by care users and their families at the earliest opportunity
• Staff are equipped to provide the correct information to people at the first possible opportunity
• Streamlined end to end processes to support and inform service users along the way

Tasks for Alpha

• design a prototype information pack suitable for online and offline for people when they enter the service.
• test with users to determine the most effective formats
• research with users to understand what questions they would like answers to
• learn about service user’s appetite and capabilities for potential future electronic communication to keep clients informed

• experiment with different ways to help people understand the charging model and eligibility criteria for financial assistance
• design a consistent conversation format and content for people coming into the service
• learn about printing and production costs to assess cost vs. benefit

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Who we spoke to

Users

• We surveyed users and people who support them to learn about the topics of importance to them
• We spoke to our experts by experience group to gather feedback on prototypes

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Staff

• We surveyed staff to gather feedback on our eligibility prototype
• We spoke to staff to understand how a checklist may help

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Our prototypes

What we produced

We produced a number of prototypes to show service users, their representatives and staff to help with conversations and find out what was important.

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We used these to learn whether they helped addressed the findings we made in Discovery.

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Information about care

We heard people didn’t have the knowledge to navigate care effectively

We designed

• a “guide to adult social care” booklet covering the social care journey
• discrete care leaflets covering topics of care such as the financial assessment

Contact cards

We heard people get frustrated trying to contact someone and we wanted to learn whether a card left with people would help.

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We designed two prototypes in two different sizes

And containing different contact information

Financial eligibility tool

We heard people didn’t understand whether they might get support with finances.

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We designed an online tool to quickly check

SMS

People told us they weren’t always up to date with progress

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We created a couple of sample messages to understand how useful they might be

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We test paper/card prototypes to gather initial views, as our planned testing sessions were in-person

Consistent conversations

We wanted to explore the idea of a simple checklist and how this might be used to stimulate conversation

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And to understand how this might be used practicality and potential for enabling recording

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We used a very basic sketch of a checklist to stimulate conversation with staff

What we found�from prototype testing

• "I think the booklet will be better because you can lose that [leaflet] very easily.“

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• “…to have that information where you can actually read through it, think on it and know you can refer back to it.”

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• “[I] would prefer to have one thing at a time rather than the big booklet, so it's not overload “

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There was a mixed response to the leaflets and the booklet

• “it’s a good idea, it’s not just for you, it’s for anybody”

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• “I feel like you need to keep things like that in my wallet, or a lady could put in her purse”

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• “there’s no point in including the Age UK or Alzheimer's information”

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People like the idea of a card to keep with them, and they have clarity around the format and content they need

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• “to have the option [of SMS] would be fine”

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• “Well, if it's updates. If you've been waiting for something ... If they can't get hold of you just like simple text, please ring me. Only you know what's going on”

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• “I don't realize I read it out loud. If it had anything private on…”

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• Your social worker or whoever should do it [save number in phone] and so when they send you a text … you know it's the right number.

People are open to receiving simple messages but trust and security need consideration

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• “Very clear for income and allowances but didn't explain if you owned a house”

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• “Could be clearer as a lot of people worry about what they pay already and what they might need to pay. Sometimes think it would help if it didn't give an estimate”

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• “I had to go back to the form after reading this question.  The form mentions - if you are having or have had an assessment  you can click the Bettercare link - perhaps something to signpost where to go if you haven't had an assessment yet might be helpful.”

Eligibility for financial support was clear however there were opportunities to simplify and inform

• “I make myself little headings on my pad first so I know whether to have that conversation with that person”

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• “Yeah, we tend to just follow the format of the care needs assessment which has already laid out for us”

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• “you never know what you're going to be met with until you get there”

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• “It's not very person centred, if you're sat typing”

Staff already prepare individual checklist before visits because each clients needs are different

Some additional insights we identified in Alpha

We heard some other things of interest during Alpha

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• about how referrals are managed
• on contacting us by phone
• on contact recording

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These are included here for completeness, they did not form part of thinking in the Alpha.

Managing referrals is a challenge for all involved

They come from many sources - "not only have the calls coming in, we have referrals coming in from ambulance services, Fire and Rescue and Police services, we have to deal with referrals coming through on email"

Capturing the right information in referrals from partners might improve this

Which all need managing - "it's checking and any contact with our team and prioritising the call backs to people"

And sometimes users have to tell their story multiple times - "They've already said the same thing to a mental health work, ... to a private care agency and then when they're coming to us, it's like we've already said this. How many times more times do we have to say it sort of things"

It's hard for people to get through on the phone

The single contact number is confusing - "Main number [297000] .... some people you get to have chosen the wrong options so you could get anything on the other end of the phone"

We could make it easier to contact Adult Social Care

And this particularly impacts people in need of support -

"customers are really struggling to get through to adult social care. The two nine 7000 is is presenting customers with such stress and anxiety it's a miracle they actually get through to us"

Staff know it's important to evidence work

To show we have asked the right questions - "It's important to get evidence that you've asked the questions and you've listened to exactly what they've said"

A mixed record keeping model might provide the right level of detail

And that a simple checklist isn't sometimes enough - "And it's like, yeah, tick that box. But it's like, would you know, can you document what it it's backing up? Really. I think there needs to be something a little bit more"

But capturing the voice of the user may lead to over recording - "Sometimes you feel like you, you’re having to type war and peace ... I do like to put quite a lot of information down. I've been told I do like to write a story sometimes"

This Photo by Unknown Author is licensed under CC BY-NC

What we found�about printing costs

500 booklets would cost about £420

That’s about 24 hours of junior social work time*

*Social care vacancy assuming midpoint grade 7 including on costs

1500 leaflets would cost less than £150

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That’s the same cost* as 12 of the longer conversations the community connectors can have

*Community connectors at midpoint grade 3 including on costs

At under 2p each, what might this be worth for stressed users and busy staff?

5000 business cards would cost £85

However we decide to provide information printing costs are not prohibitive�

Thanks

servicedesignteam@northlincs.gov.uk