National Care Service - making sure my voice is heard: regional forums - findings summary

What we learned

Complaints and redress – what is working well?

We presented key insights of what appears to be working well in relation to complaints and redress. In general, across the sessions:

• people agreed it is positive that anyone can make a complaint, whilst highlighting that people do not always know how to complain
• people agreed it is good that complaints about care services can be made anonymously or confidentially to the Care Inspectorate
• people agreed it is positive that services are encouraged to resolve issues as soon as possible however, many said that this does not always seem to happen
• people mostly agreed it is good there is a standard process for complaints but said this process can be used differently across providers

In addition to the insights we presented on what appears to be working well:

• some people shared positive experiences of making a complaint. Feeling listened to and accessing services that try to resolve the issue or getting a positive outcome from their complaint led to a more positive experience
• people said it is important to have the option of taking the complaint to an independent body if it cannot be resolved
• some people with experience of providing social care services said there has been a culture change in recent years of complaints handlers becoming more aware of issues like the impact of dementia and trauma-informed practice
• some people with experience of accessing social care services talked positively about services that asked for their feedback

Complaints and redress – what is not working well?

We presented key insights of what does not appear to be working well in relation to complaints and redress. Across the sessions, the people who attended generally agreed that:

• some people do not get a response to issues until they make a formal complaint
• some people find it difficult to find out how to make a complaint
• some people would like more help and support to make a complaint
• some people fear that their support might be taken away if they complain.
• some people’s complaints did not improve their care or other people’s care, as they had hoped
• complaints information is published in different ways, so it is hard to understand the number and types of complaints people have made

In addition to the insights we presented about what does not appear to be working well, people also told us that:

• information about the complaints process or the support available is not always accessible to the people who might need it most
• services do not always give people information upfront about how to make a complaint
• using words like ‘complaints’ and ‘complaining’ can be a barrier for people who want to raise issues but do not want to make an ‘official complaint’
• some services do not welcome complaints and feedback and view them negatively instead of as opportunities for learning and improvement
• there is a need for adequate resourcing so services can provide complaints training to staff and allow time for staff to have good conversations with people

Complaints and redress – how might we improve?

People shared ideas of how we might improve complaints handling to inform the development of the NCS complaints service. The suggestions mainly related to:

• making it easier to understand how to complain for example by making a single entry point to the complaints system
• providing information on how to complain in accessible formats (e.g. digital accessible formats or audio)
• making sure people who cannot use or access the internet can get advice and submit a complaint (e.g. a phone line and postal address)
• providing clear, transparent, and consistent information on the complaints process in simple language, including what should happen and when
• having the option of speaking to someone about the complaint, such as an advice line or a named complaints handler
• having joined-up complaints processes across sectors like health and social care
• encouraging people to raise concerns and provide feedback
• more focus on resolving issues at an early stage
• encouraging a culture change across services so complaints and feedback are welcomed and used for improvement
• increased training, mentoring and support for staff on complaints handling skills, such as communication and early resolution
• ensuring there are strong links between the complaints system for the NCS and independent advocacy
• improved information sharing so people do not have to repeat their complaint
• having a system for gathering and reviewing feedback

Independent advocacy – what is working well?

We presented some key insights of what appears to be working well in relation to independent advocacy. Across the sessions, people generally agreed that using an independent advocate helps people feel supported to challenge decisions about their care, although some highlighted that experiences of advocacy services can be mixed.

In addition to the insights we presented of what appears to be working well, some people who attended said:

• advocacy support is particularly important for those who cannot use their voice or have additional communication support needs
• there is good advocacy support for complaining about the NHS. One person described the advocate as being ‘like a tugboat by their side, guiding and protecting them’ during the complaints process
• where someone is in conflict with one body or service, independent advocacy often leads to the issue being resolved
• it is important that advocacy is independent. Some people said the Scottish Independent Advocacy Alliance (SIAA)’s definition of an ‘independent’ advocacy service or advocate explains this well

Independent advocacy – what is not working well?

We presented some key insights of what does not appear to be working well in relation to independent advocacy. Across the sessions, the people who attended generally agreed that:

• some people do not know about independent advocacy services and what support they can provide
• people might not be able to access face-to-face advocacy support if they live outside cities and in remote or rural areas
• some people are worried that because advocacy services are funded by local authorities, they are not truly independent

In addition to the insights we presented of what does not appear to be working well, many people who attended the sessions talked about:

• a general lack of knowledge and understanding of what independent advocacy is and what it can do for people
• there are gaps in independent advocacy service provision, particularly for those in rural or remote communities, those accessing social care support, and for carers
• there is not enough accessible information about independent advocacy and people often only hear of it ‘through the grapevine’
• care professionals, rather than independent advocates, should be talking to people about their care support options. The primary role of independent advocates should be to help people claim their rights
• some people expressed concern about a lack of scrutiny around the quality of support provided by independent advocacy services
• some people said it can be hard to find an ‘independent’ advocate in rural or island communities, as advocates might know the details of an issue from both sides because the population is so small

Independent advocacy – how might we improve?

People who attended shared ideas of how we might improve independent advocacy. The suggestions mostly related to:

• raising people’s awareness and understanding of independent advocacy and what it can do for them
• ensuring there is easily accessible information in simple language about independent advocacy support and how to access it
• advocates should be independent of the service provider - they should not be employed by the service or attached to it
• recognising there are local differences and local needs.
• increasing provision and access to face-to-face advocacy services, as a lot of advocacy services are online only
• having advocacy services for carers, who may have a different view or needs to those of the person receiving care
• independent advocacy services should be funded sustainably and there should be funding for specific issues
• advocates should be trained and knowledgeable on the issue at hand
• ensuring people have access to independent advocacy to support them in making a complaint, particularly those with additional needs
• recognising the difference between person-centred and person-led advocacy. Person-led approaches are preferable, as the emphasis is on decisions being made by the person accessing care support
• building on existing services and practices by gathering information about what advocacy services are out there and what is working well

Support planning – what is working well?

Across the sessions, several people shared positive experiences of the current system as follows:

• carer centres are valuable in terms of the information they provide and their approach to discussing people’s needs. However, it was also flagged that ‘delivery is patchy’
• taking a conversation-based approach to support planning is good and some people had positive experiences of this. People felt this works well where good communication is at the centre of interactions.
• however, people felt this was not consistent and they made a lot of suggestions on how it could be improved

Support planning – what is not working well?

The main things that people felt were not working well within the current process for accessing support planning were:

• a general lack of awareness about how to get support. This was the case amongst individuals with support needs, unpaid carers and also members of the workforce
• services for first telling people about social care support needs are not the same across Scotland
• community hubs and community link workers were flagged as positive services by those who had experience of them, but overall there was limited awareness of these services and people felt there was a general lack of provision
• people described the support planning process as stressful and daunting. Some people felt like they were being judged, which made them feel anxious and afraid about the outcomes. People said ‘you really fear getting the call,’ and ‘people are terrified because they fear losing their support’
• some people noted that assessments can happen without any conversation with the individual ever taking place
• where support planning conversations do happen they are not always conducted by qualified professionals
• feedback and communications from social workers can be slow with people feeling like they have to chase them
• people can be required to repeat the assessment process if they move local authority areas because they cannot take their existing care package with them
• there can be a lack of awareness and recognition of the role and needs of unpaid carers (amongst professionals but also more generally across the community, including amongst unpaid carers themselves). People also noted a disconnect between legislation that sets out rights for carers and implementation
• a lack of social work resource was felt to be a key reason for many of the things that are not working well within the current system

Other comments appear to focus on difficulties obtaining the social care support services people need after support planning and assessment, such as:

• there is inconsistent availability of social care support services with people noting that services ‘change all the time’. It was suggested this could be because many services are provided by the third sector and there is the perception that these are not properly funded. Variability in provision of day care centres across the country was also specifically mentioned
• services are often targeted towards older people rather than wider groups of people with social care support needs
• there are long waiting times for support services to be put in place. People felt this was mainly due to insufficient staff resource. Some also felt this was because services in their area are disjointed and fragmented

Support planning – how might we improve?

People’s suggestions for improving the process for accessing support planning were as follows:

• addressing the stigma surrounding receiving social care support
• providing people with clear information throughout their journey, but especially from the beginning
• making support services available when people have lower level or earlier stage needs. Some felt that community health contacts are the best place for people to go initially. GPs and pharmacists were mentioned specifically but others recognised that other / new services might also help avoid overburdening existing community health services
• services should be able to do more such as signposting to or ‘prescribing’ local community supports such as befriending services or local walking groups
• introducing a ‘lead person’ or ‘single point of contact.’ This would provide a coordination function, helping people to navigate the process and provide them with continuity. This could be an extension or evolution of the existing community link worker scheme. Parallels were drawn with the ‘lead professional model’ within the Getting it Right for Every Child programme. Link workers available through Alzheimer’s Scotland were also mentioned as an example of good practice
• having a centralised helpline promoted with a campaign to raise awareness
• taking a ‘whole community approach’ so that people can recognise when they need support, particularly when they have earlier-stage needs and where they live alone or have a limited network of friends or family.
• investing in community-based supports was felt to be key. Specific ideas that people supported were having community offices and community hubs as a first contact service, particularly in rural areas
• better partnership working with third sector organisations because they can sometimes be better placed to provide services. This would help to ‘lighten the statutory load’ and deliver positive outcomes for people

In terms of the support planning process, it was stressed by many that relationship- building needs to be the focus rather than making structural changes. People suggested that:

• there should be a focus on conversations that take a person-centred and strengths-based approach rather than assessments
• conversations should start with people’s goals and ‘what good looks like for that person’ rather than being determined by available resources (which people felt was often the case at present)

For this approach to work people suggested that:

• conversations should follow a format that is the same for everyone while responding to individual rights and needs.
• conversations should be led by qualified professionals
• people should be provided with examples of different options that might meet their needs to help them think through what they want. Success stories could also be shared to help people learn from others’ experiences
• there should be an opportunity for friends, families and carers to be involved. It was noted that some individuals do not always remember to share details of appointments with family members and so direct communication with representatives would help (where appropriate)
• there should be more frequent reviews to reflect changing circumstances
• conversations should be based on people’s whole needs (not just physical needs)
• more social workers are needed because of the amount of time taking this conversation approach takes. To do this it was felt that the social work profession needs to be made a more attractive place to work

Some front line staff who participated specifically stressed that wider system changes in terms of eligibility and availability of social care packages are also required if the above outlined support planning improvements are to make any difference.

Improvements for unpaid carers were also a specific area of focus. The key points raised were:

• increase awareness and recognition about the role and value of unpaid carers and who they are across the community rather than identifying them based on who is in receipt of carers allowance.
• two specific suggestions for how this could be done were changing the terminology to enable people to recognise themselves as carers, and having more information hubs to provide relevant information
• build carers’ needs into the support planning and assessment process, including acknowledging their own circumstances such as work and other commitments and any illness or disabilities they may have
• make the carer assessment process easier and less daunting. One specific suggestion was to automatically offer support for carers when someone with support needs first seeks support. Another suggestion was to standardise carer support planning across health and social care so that carers do not have to repeat themselves
• offer practical supports for carers like access to training
• improve the visibility of Carers Centres
• ensure there is independent advocacy support for carers

There were also general comments about improvements that could relate to support planning but also about the provision of services more widely:

• a consistent approach to social care training that embodies a holistic approach
• being able to employ family members / friends as personal assistants

Eligibility criteria – what is working well?

There were no positive comments about the current eligibility criteria or their application.

Eligibility criteria – what is not working well?

People felt strongly that the current eligibility criteria and their application do not work. Some of the comments overlapped with similar comments about the support planning process. The main issues raised were:

• the way eligibility criteria are currently applied often means that people are at crisis point before they can get the support they need
• eligibility is based upon availability of resources rather than individual need, which may be ‘substantial’ or at crisis point before the person becomes eligible to receive support
• portability of care when people moved area was raised as an issue for both assessment services and eligibility to receive adult social care support.
• people felt the support planning process can be used to filter eligibility in advance by confirming that people’s needs are not serious enough for a full assessment and to ‘talk people out of the care they need’
• there is a lack of awareness and access to the different self-directed support (SDS) options. There was also a sense that limited budgets mean people are often not able to choose the best option for them. A lack of resourcing for Personal Assistants (PAs) was cited by one person while another felt ‘money is the main barrier to being able to access support’
• there can be an assumption by professionals that people want things done for them rather than making decisions themselves
• many people encounter lengthy waiting times for services to be put into place
• people want consistency around eligibility to receive social care support, as this can differ between local authority areas
• people want flexibility in support planning as people will have different needs and ‘the same size doesn’t fit all’
• people said that eligibility criteria are discriminating and excluding people

Eligibility criteria – how might we improve?

Suggestions for improvements were as follows:

• based on comments about what is not working, people feel that a change to eligibility criteria categories and/or how they are applied would be an improvement
• however, there was also the suggestion there is a need to go further and to ‘abolish’ eligibility criteria entirely
• having a standardised approach to eligibility with the same criteria/procedures applied across Scotland
• look at shared decision-making and identify if there is any good practice that can be incorporated
• having a named and trusted social worker who knows the person and will be able to re-assess when things change. One person said ‘relationships are key but named social workers are non-existent’
• more accessible information about what will happen so that people can be prepared