4. Additional topics discussed by stakeholders
In addition to the substantial themes in chapter three, a number of connected topics were discussed by stakeholders in their responses to the questionnaire. Some of these build on the content of the discussion paper.
4.2 The topics (in alphabetical order)
Social care assessments were referenced in responses in a number of different ways. Some responses referred to delays in people receiving social care assessments (one response specifically mentioned hearing this from older people), and the need to address this. Others commented on the need for assessment processes to be more flexible and responsive to changing conditions and individual circumstances. This was to ensure that assessments can be carried out at times that are appropriate and helpful for people. Across all of the responses, there were also a couple of comments on the need to 'streamline' assessments. One response suggested exploring if assessments could be undertaken by social care providers and/or community experts, rather than only social work staff.
Responses also emphasised the human rights basis of the self-directed support legislation; the importance of an outcomes-focus to assessments and for them to be reflective of a person's right to live a meaningful life; and flexibility in the way in which resulting social care budgets can be used by a person to support them. Some also gave examples of people not being given the right information to make a decision about their support. However, one response highlighted that for assessments to be underpinned by choice and control for the person who will receive the support, there must be sufficient resources for this to be realised:
"Other resource issues include assessment and waiting times, and the limits that resource pressures place on realising personal choice and control." (quote from a third sector organisation)
"issues noted [around adult social care assessment and support planning] included a lack of clear information, people not being told about the SDS Options [self-directed support options], many people not being told their budget and a lack of outcomes focussed planning. Members also reported many examples of a lack of flexibility in budgets, for example people being told they could only use their Direct Payment for support hours. Members were also concerned that in many cases people could only access their rights under SDS [self-directed support] and social care by 'fighting' for them." (quote from a third sector organisation)
"There should be no unnecessary delays between assessment and provision of social care support for people living with a terminal illness and their informal carers. Services should also be able to change social care packages quickly to respond to a crisis, deterioration of patient or their carer, or if the person's wishes change." (quote from the third sector)
Some responses also mentioned alternative forms of support, and avoiding formal assessments unless they are necessary and appropriate:
"the identification of social isolation and loneliness should be given a priority for early intervention e.g. through a network of 'Befrienders' who could come from the voluntary sector before the need for any assessment of care needs." (quote from the public sector)
Alongside assessments for social care, some responses suggested that there should also be "regular review processes for everyone accessing social care (including those already in receipt of SDS [self-directed support])". The responses related this to the fact that people's circumstances, conditions, priorities, personal outcomes and needs change, and that it was important to ensure "people are encouraged to fully explore all four options [of self-directed support] to best establish the most appropriate arrangement that meets their outcomes." (quotes from the third sector)
Some responses specifically expanded further on the topic of charges for adult social care. The responses that discussed charging were generally negative on the topic, for example, questioning care charges overall, and describing concerns about impacts of complex and variable charging approaches:
"Disabled people's views and experiences on Care Charges are very clear: Care Charges contribute to disabled people's poverty, stop people from accessing the care and support they need, and constitute a discriminatory tax on disabled people's (sic)" (quote from a third sector organisation)
"Charging […] is a key issue which requires further consideration as there are many inconsistences around charging and an ever more complicated landscape with the introduction of free personal care and waiving of charges for carers. We are concerned that as local authorities face increasing demands on finances, carer support will be achieved (through 'default') by supporting the cared for person where charges can be applied." (quote from the third sector)
Commissioning and procurement
A number of responses raised the topic of practice around the commissioning and procurement of adult social care services. In general, responses called for greater application of flexibility in commissioning practices, in line with the principles of self-directed support:
"It would be good to see an approach that encourages a range of collaborative, creative ways of commissioning and delivering flexible outcome focused support." (quote from a third sector organisation)
One response commented on what they felt was a move away from this sort of approach:
"SDS [self-directed support] raised the possibility of more creative approaches to the commissioning of services, particularity with regard to options 1 and 2 [for self-directed support]. However, in practice we have noted increasingly restrictive approaches imposed by local authorities on what services can be purchased and from whom, thereby restricting individual choice, control and autonomy." (quote from the third sector)
Two responses felt that an issue that required further consideration in the discussion paper was considering how social care provision interacts with the population's increasingly complex needs. Responses felt that the current system/way of doing things wasn't fit for adapting to/planning for complex needs:
"Providing quality care and support to meet increasing complexity of need is an issue that providers of social work and social care are currently grappling with." (quote from a third sector organisation)
Few responses mentioned specifically that digital solutions/technology in social care were topics that were not sufficiently covered in the discussion paper, and that needed further emphasis or a different focus. Some respondents took the opportunity to comment further on this topic. These comments were mixed. Some commented on there being a potential for digital technology to support people in helpful and positive ways. Others expressed concerns about overestimating the improvements and cost savings that digital solutions will have in social care, and commented that digital solutions will not be appropriate for everyone:
"Empower individuals and communities to be contributing, active citizens, especially in areas of high deprivation. This demands longer term investment in local communities and groups to ensure people are supported to live well outside of hospital, e.g. using technology to support and enable self-management, and easy access to information and tools to improve health and care literacy." (quote from a third sector organisation)
"IT and technology related solutions will only go some way to provide solutions for multiply challenged, very elderly people." (quote from the public sector)
"Digital technology such as the use of prepayment cards to manage and monitor SDS funding, or 'telecare' systems to supplement other forms of social care support, may have a part to play in 'modernising' services and making best use of limited resources. However, they may also exclude large groups of disabled people who are 'digitally excluded' and unable to use them to control their support. […] 'telecare' systems may be seen as more cost effective by funders, but they also risk increasing the anxiety, reducing the flexibility to meet urgent need, and ultimately adding to the isolation from human contact that many disabled and older people are already more likely to experience. We would argue, therefore, that both options should be available if they are positive choices that enhance an individual's ability to control their own life; but neither should be imposed on a person purely out of financial or administrative expediency." (quote from a third sector organisation)
One response felt that there was a particular need to help spread the use of digital technology to the third sector, and that the national programme was an opportunity to do so:
"Third sector providers have expressed a willingness to explore digital and technological solutions, but have reservations about the cost and risk involved in developing these, as well as the lack of specialist expertise and knowledge within the sector. The national programme could have an important role in supporting knowledge exchange and reform, connecting them to the higher education and private sectors." (quote from a third sector organisation)
Many respondents felt that changes to the current eligibility criteria for adult social care was an issue that wasn't sufficiently covered in the discussion paper. Broadly, this was referenced either in regards to a) a "tightening" of criteria over time, and people not being eligible for support that previously would have been available to them; and b) criteria currently being at levels such that only "critical" need is being addressed.
Other topics referenced included: an "inevitable tension between the use of eligibility criteria and the principle of preventative support." (quote from the third sector);and the 'discrepancy' between health and social care insofar as there being universal criteria for access to the NHS, yet local criteria for access to social care.
A small number of responses commented on the need to be more explicit in the discussion paper about considering the specific challenges for, or characteristics of, particular demographic groups:
"Understanding barriers to engagement (awareness of services, ability to navigate systems, language, disabilities both physical and learning disabilities) and consulting with 'harder to reach' individuals and communities, will help to design a universal service that is proportionate to need." (quote from the public sector)
"particular and unique challenges faced by ethnic minority groups to accessing social care (often language/culture barriers), travelling communities, etc." (quote from a combined group from the third sector and independent sector)
One of the responses highlighted the need to remember that social care is accessed by a wide range of people, and that care should be taken to ensure a reformed system is not biased towards a particular demographic (their specific example was in relation to older populations):
"The national agenda for Adult Social Care should explicitly include all demographic groups including people with mental health problems, those with physical disability and those with learning disability, to counter any tacit assumption that adult social care refers solely to the older population." (quote from a third sector organisation)
A few responses specifically listed "flexibility" as an issue within the current adult social care system. It was also often referenced within responses to other parts of the questionnaire. Comments generally revolved around either a lack of flexibility in how social care is currently delivered, or the need for greater flexibility in the system and processes around adult social care in future.
What each response meant specifically by 'flexibility' was not often elaborated upon. However, references to flexibility were often when responses were discussing self-directed support:
"Related to this is the need to look at how the system can be made more flexible [to] respond to needs that change, often quite quickly. Self Directed Support should support this flexibility." (quote from a third sector organisation)
Some specific examples that were given of increased flexibility included increasing the 'portability' of care, so that people are able to relocate within Scotland freely whilst still receiving the same care provision; and a greater degree of flexibility around what individual social care budgets can be used for. One response mentioned specifically that there was an opportunity for more innovation around the potential to use budgets for support focused on enabling people to participate in the community. Another called for measures to flex access to self-directed support payments according to a person's situation – for example, allowing self-directed support payments for someone who is at the end of life to be made to family members if they wish/that is appropriate.
A few responses related the current level of flexibility to a "reluctance to change" within the system:
"Many respondents identified reluctance to change (personal/organisational and systemic) was at the root of the challenges faced in social care. Inflexibility of the system was identified as the key driver for inflexible procurement and contracting approaches; eligibility criteria; and; assessment processes. Reluctance to change was also seen as a driver (and cause) of rigid expectations of what 'a good life' looks like for supported people and rigidity in the provider- contracting authority relationship." (quote from the third sector)
A few responses felt that increasing access to advocacy and good quality, free information and advice for people accessing or trying to access social care, should be added to the topics considered in the discussion paper:
"The availability of free advice is also a key issue within the adult social care system. We believe it's a necessity within reforming social care that people are aware of their options and rights, and where they can access further advice and support" (quote from a third sector organisation)
Suggestions revolved around opportunities for more information on self-directed support to be provided both nationally (e.g. by Health and Social Care Partnerships, Scottish Government, etc.) as well as locally (e.g. by GPs, hospitals, social workers, healthcare professionals).
Free personal care
A few responses felt that free personal care should be explicitly referenced in the discussion paper as a topic to consider in the national programme for adult social care reform. Comments often suggested there was ambiguity in regards to how changes in free personal care policy will impact on social care delivery:
"Consideration should be given to the implementation of free personal care for under 65s and the impact to current models of adult social care and how this will be resourced." (quote from the public sector)
A few responses specifically discussed the topic of human rights. They felt that they should be considered explicitly in the national programme, and should be the overall foundation for social care and social care reform. For example, a few responses commented on the need to embed a human rights-based approach into the refreshed Implementation Plan for self-directed support.
"The social care system should be based on a framework of Human Rights and equal participative Citizenship." (quote from an individual)
"We believe that the reform should be outcome led and informed by a framework of human rights […] The language of human rights is increasingly being used in social care and associated legislation but we have yet to see this fully embraced by local authorities." (quote from a third sector organisation)
Joining up with existing work
A few responses felt that the national reform programme was an opportunity to tie into and expand upon work that is already underway:
"[The national] Programme should recognise the opportunity provided by the Health and Social Care Delivery Plan in terms of building upon and considering the whole system of care" (quote from the public sector)
Similarly, one response commented that there could potentially be confusion around how the national programme to support social care reform and other ongoing pieces of work tie together:
"There are obvious risks of confusion between the adult social care reform and other policy developments such as Fairer Scotland, self-directed support, health & social care integration and Keys to Life review. Opportunities exist to model cross policy approaches at a national level that will enable local coordination. Agreeing a common vision and outcomes and consistent use of language would help." (quote from the third sector)
A few responses emphasised leadership within the system as one of the key areas to focus on in the national programme. Leadership was often discussed in the context of building capacity within the system; collaboration across the system; and models that support collective and dispersed decision-making:
"We consider that 'Local and National Leadership' is fundamental, as all the other issues are dependent on strong and effective leadership. While effective local leadership is crucial, we consider that the challenge in respect of the adult social care agenda is so significant that leadership from the Government is key. So, national leadership then local leadership." (quote from the public sector)
"We believe that co-production approaches to public policy reform requires a different sort of leadership to traditional 'leading-from-the-front' models. While we want Local HSCI [Health and Social Care integration] partners, IAs [Integration Authorities] etc, the third sector and communities to take ownership of the changes, we are concerned that the current leadership models are more about retaining or gaining power, which does not lead to the outcomes [we are aiming for]" (quote from a third sector organisation)
"Strong and collective leadership is needed and leadership in social care reform needs to be far ranging. A process that allows for collective decision making is key to enable local change, this will help to ensure decisions that are made nationally are realistic for local delivery and are based on local needs." (quote from the public sector)
"[the vision for adult social care will be achieved by] National and local sign up at all levels to the vision/outcomes" (quote from the public sector)
Chapter 5 of this report discusses in more detail what stakeholders said about collective leadership for the national programme and for the reform of adult social care.
A few responses listed current legislation around social care as an issue that should be discussed further. Some of these responses felt that current legislation allows for inconsistency in how it is implemented between different areas of Scotland, and that the system resulting from it is overly complex:
"[a concern is] The patchwork of legislation that determines what and how social care is delivered, and issues and inconsistencies in its implementation as well as the complexity it creates for people who need care." (quote from a third sector organisation)
"Scotland has led the world on setting a person / citizen centric approach to delivering public services and empowering individuals to self-drive, self-direct their own lives. This policy is in our view correct but policy needs to be implemented and Scotland is fighting the inertia of the market, the status quo and generations of organisation centric thinking. Policy will only realise its potential if an ongoing proactive and positive endorsement and education of that value and clarity of what person / citizen centric means and how it can be implemented." (quote from the third sector)
Local authorities and NHS Boards
A few responses specifically discussed the role of local authorities/local government and NHS Boards, and felt that this should be considered explicitly in the national programme. Typically, these responses argued that current power and decision-making structures would need to change in order for widespread improvements in social care, and more widely in the integration of health and social care, to be seen:
"A fundamental change in the relationship between local authorities and health boards in order for the integration of health and social care to deliver transformational change in services required. The reform of adult social care is a significant opportunity to do so." (quote from the third sector)
"The current [31-authority] Scottish Local Government structure, although beyond scope of this programme, should be acknowledged as a significant issue in relation to effective reform." (quote from the public sector)
"Decision making and authority [reference to a category included in the discussion paper]: This area [of work, if included in the programme] needs to encompass the requirement to shift power away from local authorities and health boards and towards communities, as one of the fundamental principles of Integration [the integration of health and social care in Scotland, as legislated for in 2016]." (quote from the third sector)
Furthermore, some responses called for the 'streamlining' of local processes around adult social care, to "enable better and speedier access to personalised options." (quote from a third sector organisation)
Local IT infrastructure
A few responses felt that greater IT system capacity and capability within social care to meet future challenges was a topic that required further emphasis within the discussion paper:
"robust IT systems that communicate between health and social care." (quote from the public sector)
New 'models of care'
In their responses across the questions in the questionnaire, a few respondents specifically mentioned creating opportunities for new ways of supporting people. This was mentioned in the context of ensuring that social care support can be person-centred:
"there also needs to be a debate on what types of care and support are eligible for state funding. There are many tasks and interventions that could potentially have a very positive impact but they are not classed as 'social care'. Care Managers in the main still decide what a person needs and the individual has to choose from what is on offer. Genuine personalised services are very rare." (quote from a third sector organisation)
One response suggested exploring new ways for how social care providers operate:
"[There should be] Incentives to encourage community based providers to deliver care with a mix of voluntary and paid work to deliver on individual outcomes. This will expand provision and create more resilience and sustainability into the social care economy as well as contributing to other social and economic benefits." (quote from a third sector organisation)
Out of hours care
Access to out of hours care was raised as an issue in one response as needing further attention, and that should be an element of what is considered in the programme.
Palliative and end of life care
Two responses felt that palliative care deserved specific attention in the reform agenda. This was mentioned particularly in light of demographic changes, with more people living longer on average and with more complex needs towards their later stages of life. Responses mentioned this both in terms of a) access to care for people living with a terminal illness and those at the end of life, and b) a more holistic approach to support and support planning throughout life, and a role for adult social care and social work professionals in this:
"The [national programme to support] reform of adult social care is a significant opportunity to ensure that people with terminal conditions and those at the end of life get the care and the support they need in all settings. As such, we believe there should be much more of a focus on people's journeys and how they move across different services and between different settings, and making sure social care is organised and co-ordinated in a way to support that." (quote from the third sector)
(NB: The Scottish Government has committed to ensuring that, by 2021, everyone in Scotland that needs palliative and end of life care has access to it. More information can be found in the document The Strategic Framework for Action on Palliative and End of Life Care. This Framework was launched in 2015. It sets out the key actions to be taken to deliver the Government's commitment on access to palliative care. It is accompanied by a Supporting Evidence Summary document which is informing how the actions in the Strategic Framework are being taken forward.)
A few responses provided further comments on how risk is evaluated and approached across the management and delivery of adult social care. They felt that measures to support the adoption of a "risk enablement approach" would be an important part of reforming adult social care:
"Risk-enablement will be a key area of focus for the future. This links directly to the SDS [self-directed support] aspect of the discussion paper." (quote from the public sector)
One response suggested that "local authorities/individual practitioners may be 'risk averse' rather than enabling positive risk taking", and there needed to be efforts made "to encourage greater autonomy at individual social worker level". (quote from the third sector)
One response cited unmet need as one of the issues that should have greater specific consideration in the discussion paper. There were also various references to unmet need in the answers to all of the questions in the questionnaire. A few examples of these are:
"It should be established if existing data sources can be aligned to give a more holistic picture of outcomes, expectations and levels of unmet need, or if more significant changes are required." (quote from the third sector)
"data on unmet need could then be used to identify the real level of funding required to make independent living a reality for all disabled and older people. Information of this kind is essential if we are to have a meaningful public debate on the future funding of social care in order to inform future policy and decisions about public expenditure priorities. […] As a first step [in the programme] we urgently need to start collecting meaningful information on the level of unmet need. This does not mean information based on professional assessments (which are often tailored to locally determined eligibility criteria and are designed to ration demand, meet budget constraints, and manage risk). Proper assessment of unmet need must be based on the core principles of independent living." (quote from a third sector organisation)
"[a priority for the programme in the short term should be] Quantifying resource needed to provide adult social care services currently and what the unmet need is." (quote from the public sector)
One group of stakeholders from the third sector and independent sector commented on the need for the programme to "explicitly recognise the difference between challenges in urban and rural areas (e.g. accessible public transport, availability of care providers, etc.)". A few responses also made reference to rurality in response to later questions within the questionnaire. These references similarly related to differences between rural/remote areas and urban areas affecting what approaches to social care were appropriate, as well as differences in challenges between the two. This was particularly in regards to the cost of care, recruitment of social care staff, stability of care home availability, and the range of/ability to attract care and support providers.