National Care Service: consultation analysis

3. Improving care for people

Chapter overview

Benefits of the NCS taking responsibility for improvement across community health and care services

A majority of respondents (both individuals and organisations) thought that the main benefit of a National Care Service taking responsibility for improvement across community health and care services would be more consistent outcomes for people accessing care and support across Scotland (575 of the 751 respondents to this question (77%)). This was followed by better coordination of work across different improvement organisations (543 of the 751 responses to this question (72%)). Respondents tended to welcome the opportunity to create greater consistency across Scotland, while offering more guidance for people accessing care and support and staff.

Risks from the NCS taking responsibility for improvement across community health and care services

Risks identified included the potential loss of the voice of people accessing care and support and of care workers, the impact on local services, understanding of local needs and local accountability, the variation of needs especially where more rural and remote areas such as the Islands are concerned, and staffing concerns with regards to retention and morale. Other areas of concern were around the potential for increased bureaucracy and disruption to those areas that currently work well.

Access to care and support

Respondents were most likely to state that they would access care and support through their GP or another health professional (504 of the 647 responses to this question (78%)). Just over six in ten (384 of the 629 responses to this question (61%)) of the respondents to this question stated that they would be likely to contact a national helpline and a similar proportion (372 of the 633 responses to this question (59%)) stated that they would be likely to contact their local authority online. The majority thought that a lead professional to coordinate care and support would be appropriate at an individual level.

Support planning

Respondents were almost unanimous that they or their friends, families or carers should be involved in their support planning. There was also a majority in agreement with the statement that "decisions about the support I get should be focused on the outcomes I want to achieve to live a full life" (637 of 671 respondents to this question (95%)). Respondents also expressed strong support for a single plan under the Getting It Right For Everyone National Practice model alongside an integrated social care and health record. It was thought by many that these measures would streamline processes and make the system easier to navigate.

Right to breaks from caring

Around two thirds of respondents thought that there should be a universal right to a break from caring. A majority of individuals and organisations (491 of the 607 respondents to this question (81%)) valued personalised support over a more standardised support package. Around half through that flexibility and responsiveness was more important than certainty of entitlement.

Using data to support caring

A large majority of respondents agreed that there should be an integrated and accessible social care and health care record and that information about an individual's health and care needs should be shared across the services that support them. There was support for legislation to ensure that care services and other parties provide information in line with common data standards. Concerns were raised by some in relation to data security and GDPR, cybersecurity; and the implementation risks of large national IT systems.

Complaints and putting things right

There was relatively high support for a charter of rights and responsibilities and agreement that there should be a Commissioner for social care. It was thought that a Commissioner would give people accessing care and support a voice and provide assurance that complaints would be addressed properly. Concerns related to fears of an additional layer of bureaucracy and to structural issues such as independence.

Residential care charges

Opinion also tended to lean towards the view that residents in care homes should make some contribution to the costs, particularly in terms of food and rent, however there was less agreement that care home upkeep should be something for which contributions should be expected, such as cleaning, food preparation, transport, maintenance, furnishings and equipment. There was also a majority view amongst both individuals and organisations that the current means testing arrangements should be revised.

Introduction

This section of the report considers the responses to the Scottish Government's proposals that seek to transform the system, put a human-rights based approach at its heart and strengthen the focus on preventative approaches across community health and social care services. It covers: improvement; access to care and support; rights to breaks from caring; using data to support care; complaints and putting things right; residential care charges and eligibility criteria.

Improvement

The consultation document on a National Care Service for Scotland stated that "improvement must be a key focus of the NCS. The establishment of a single national body, with clear lines of accountability to Ministers at a national level, gives us the opportunity to ensure that consistent, high standards of performance are developed and maintained across Scotland. That national view will also ensure that learning can be shared and implemented across the country. Intelligence gained from inspection and scrutiny of services will be used to identify where improvement is needed, and themes will be fed back into commissioning and procurement."

Q1. What would be the benefits of the National Care Service taking responsibility for improvement across community health and care services? (Please tick all that apply)

	Individuals	Organisations
Better coordination of work across different improvement organisations	361 (72%)	180 (74%)
Effective sharing of learning across Scotland	326 (65%)	171 (70%)
Intelligence from regulatory work fed back into a cycle of continuous improvement	277 (55%)	146 (60%)
More consistent outcomes for people accessing care and support across Scotland	391 (77%)	182 (74%)
Other	132 (26%)	113 (46%)
Total	504 (100%)	245 (100%)

The first question in the Improvement section was answered by 751 people, of whom 504 were individuals. The top benefit of an NCS taking responsibility for improvement identified was "more consistent outcomes for people accessing care and support in Scotland" with three quarters of respondents in total selecting this option. This was followed by "better coordination of work across different improvement organisations".

Other benefits of the NCS taking responsibility for improvement across community health and care services (suggested by 466 respondents to this question) tended to reference:

• A set of national standards for care
• More guidance around standards and how they should be applied
• The opportunity to streamline the service and improve future outcomes
• The potential to present knowledge sharing and upskilling opportunities across the workforce
• Efficiency savings through national procurement
• Improved and better use of data collection and sharing
• A greater potential for innovation
• Improved and more integrated career pathways for the health and care workforce in its entirety (greater career progression, flexibility and parity in pay between sectors and across providers)

The people accessing care and support who responded to this consultation tended to highlight improved access to care, a more consistent approach, ending a perceived "postcode lottery" and greater accountability. Health and social care staff, such as frontline workers, management and social workers agreed with this sentiment, and also highlighted the importance of funding, wage increases and working together across health and social care more consistently.

Please note that the comments in this section should be read in conjunction with the comments provided in relation to the overall concept of the NCS as many respondents replied to this question in relation to the general concept of a NCS rather than in relation improvement specifically (please see Q20 in Chapter 4 of this report). Free text comments included:

"Less unnecessary and repetitive bureaucracy." (Person accessing care and support)

"Hopefully, less chance of people falling through the cracks, or getting lost within the system. Hopefully, [a] more targeted approach and care. Also, that there would be just the one agency dealing with a person, rather than multiple agencies." (Person accessing care and support)

"Clearer leadership and accountability pathways, with follow through of care reviews and prompt action, instead of lost in multiple layers of local bureaucracy. Fairer eligibility criteria... More efficient communication/fairer care between providers and people using services and those working in the services." (Current or former frontline care worker and unpaid carer)

Of the Easy Read responses received, the vast majority, 37 out of the 41 (90%) who responded to this question, believed that a National Care Service taking responsibility for improvement will help make sure that good practice is shared across Scotland. Verbatim responses to this question tended to suggest that a NCS would:

• Give greater consistency across Scotland
• Achieve greater efficiencies

Q2 Are there any risks from the National Care Service taking responsibility for improvement across community health and care services?

There were 694 responses to the question whether there are any risks from the National Care Service taking responsibility for improvement across community health and care services (Q2). Common concerns were raised with regards to:

• People accessing care and support and care workers 'not having a voice'
• The effect on care, such as creating more confusion and lack of clear communication, funding being diverted and the need for people with lived experience to help inform decision making.
• The impact on local services, such as the potential loss of local empowerment and flexibility to local needs, especially in rural areas where there are "unique service delivery challenges which require bespoke approaches to service provision". As one organisation highlighted in this context: "the pandemic has served to remind us of the importance of human connection and the value of relationships".
• The variation in needs across different areas of Scotland
• Impact on decision-making in the best interest of the Person accessing care and support
• Staffing issues including the potential impact on retention and morale
• Competing governance roles and structural barriers
• Competing priorities and performance frameworks
• Potential risks to local innovation

Risks identified by people accessing care and support included: increased bureaucracy; loss of local knowledge; loss of what currently works well; and a "one size fits all approach":

"The danger is that they will ignore the special problems faced by those in Highlands & Islands area." (Person accessing care and support)

"If things are missed, gaps or faults created they could be replicated across Scotland. Possibility of loss of flexibility and creativity." (Person accessing care and support)

"Local Authorities and Health Boards already have their own ways of working which suit their own area e.g. rural or urban, with a large proportion of older people etc. It is very important that if something is working well, it is not disrupted in order to try to have a one-size-fits-all service." (Current or former frontline care worker)

"[There are] always risks when a single body controls such a wide variety of services necessary to care for an even wider variety of people." (Current or former frontline care worker)

Respondents working in social care also highlighted the importance of retaining local knowledge, particularly in relation to rural and more remote areas.

"Scotland has a rich and varied geography and demographic, therefore it is essential that the NCS takes account of local information, needs and priorities to support improvement across each area." (Current or former social worker)

There were also concerns amongst organisational stakeholders about the risk of additional bureaucracy:

"Added bureaucracy. A NCS that adds a layer of bureaucracy and added governance, or delivery layer would be inefficient. With best value in mind, consideration should be given to the totality of resourcing and capacity already within the system." (Public Health Scotland)

Other risks included disrupting or diluting existing good practice at the local level; the potential loss of existing partnerships; the need to avoid silo working or further fragmentation of services; and the availability of sufficient funding.

"A risk funding for social care support could be "subject to dilution", and that the recommendations of the IRASC will not be fully implemented and a NCS will be watered down." (People-Led Policy Panel, Inclusion Scotland)

"However, there are key issues surrounding the financial underpinning of the proposals, their implications for the Local Government workforce, human rights and other key areas where there is a need for further information and clarification… It is imperative that further detail relating to these areas is provided immediately as there is a not inconsiderable risk that information relating to these issues will not be given due consideration as a result of not being emphasised in the formal consultation respondent form" (COSLA)

Other organisational stakeholders questioned whether a National Care Service was the solution at all.

"A centralised national service is not a necessary nor proportionate solution to all of those failures. Indeed, many of the improvements required could be (and in some cases already are being) delivered more quickly, more effectively, and ultimately at lower cost through the proper resourcing and effective utilisation of existing structures." (SOLACE)

The respondents to the Easy Read consultation also identified a number of risks, including:

• Data security and information sharing
• The risk of creating a top heavy organisation

One respondent to the Easy Read consultation also emphasised the importance of learning from other restructuring exercises such as Police Scotland, as have others in responses to other questions in this consultation exercise.

Overall, many respondents saw the benefits of a National Care Service taking responsibility for improvement across community health and care services, particularly in relation to providing more consistent outcomes for people accessing care and support across (ending the "postcode lottery"), more joined up working across different improvement organisations and greater efficiencies. Risks identified included the ability to respond to local needs; bureaucracy; and funding.

Given that this was the first question in the consultation many respondents used this opportunity to comment on the concept of the NCS in general (please see the following chapter for further comment). Some respondents also stated that there is insufficient detail in the consultation document to allow them to respond fully to this question.

Access to care and support

The section on "Access to care and support" of the consultation outlines the Scottish Government's proposals to create fairer access to care across the country. It states that: "we will remove eligibility criteria in their current form by moving away from a focus on risk and instead focusing on enabling people to access the care and support that they need to lead a full life. This will mean significantly changing the way care and support services are designed, so that prevention and early intervention is prioritised and people can move easily between different types of care and support as their needs change."

Q3. If you or someone you know needed to access care and support, how likely would you be to use the following routes if they were available?

	Not at all likely	Unlikely	Neither/ nor	Likely	Very likely
Speaking to my GP or another health professional (647)	45 (7%)	41 (6%)	57 (9%)	240 (37%)	264 (41%)
Speaking to someone at a voluntary sector organisation (641)	68 (11%)	105 (16%)	108 (17%)	241 (38%)	119 (19%)
Speaking to someone at another public sector organisation (627)	140 (22%)	162 (26%)	147 (23%)	130 (21%)	48 (8%)
Going along to a drop in service (630)	115 (18%)	170 (27%)	124 (20%)	153 (24%)	68 (11%)
Through a contact centre run by my local authority (633)	71 (11%)	79 (13%)	123 (19%)	235 (37%)	125 (20%)
Contacting my local authority by email or through their website (633)	69 (11%)	79 (13%)	113 (18%)	208 (33%)	164 (26%)
Using a website or online form that can be used by anyone in Scotland (633)	58 (9%)	90 (14%)	116 (18%)	217 (34%)	152 (24%)
Through a national helpdesk that I can contact 7 days a week (629)	70 (11%)	73 (12%)	102 (16%)	218 (35%)	166 (26%)

The consultation received responses from between 627 and 647 respondents to Q3 (which routes they would use to access care and support). Speaking to their GP or another health professional, a voluntary organisation, a national helpdesk or national online form were the options that were most likely to be used. Speaking to another public sector organisation or a drop in centre were the least popular options.

The Easy Read responses followed a broadly similar pattern, with 43 out of the 45 (96%) that responded to this question, stating that they would contact their GP or another health professional. This was followed by a "national helpline that could be contacted seven days a week", with 27 out of 45 respondents (60%) giving this response. There were no real differences by type of respondent.

Respondents were also able to suggest other options for accessing care and support at this question and 335 respondents took this opportunity. Common themes raised when respondents were asked about routes available to those needing access to care or support included perceptions that it is:

• Difficult to know what support was available to them other than their GP
• Difficult to access GP services in the current climate (i.e. in the Covid-19 pandemic)
• Important to consider accessibility for those more vulnerable users

Some of the responses to this question reflected these frustrations with the existing system:

"The access to GPs is really difficult and it makes you feel so alone. I tried a number of times and it feels like GP service is now accident and emergency only." (Individual respondent)

"There should be one single accessible point of access. Instead there are numerous confusing routes." (A friend or family member of mine receives, or has received, social care or support)

"Being from the BME community, many of the above are traditional middle class access points that are not well advertised or understood or accessible to many people that I know from my community." (Unpaid carer)

In general, there was broad and widespread support for more flexible and personalised approaches to providing care:

"A focus on enabling people to access the care and support that they need, through a set of entitlements, is welcome, as is the commitment to prioritise prevention and early intervention and allow people to move easily between different types of care and support as their needs change." (Dundee City Council)

"We know that, depending on their needs, experiences and preferences, people

use a range of different routes to access care and support. It is right that people

should have choice and flexibility and we recognise the importance of a person-centred approach to identifying needs and improving outcomes." (East Ayrshire Council and East Ayrshire Integration Joint Board)

Q4. How can we better coordinate care and support (indicate order of preference)? % ranked 1st

	Individuals	Organisations
Have a lead professional to coordinate care and support for each individual	307 (61%)	86 (56%)
Have a professional as a clear single point of contact for adults accessing care and support services	110 (22%)	31 (20%)
Have community or voluntary sector organisations, based locally, which act as a single point of contact	85 (17%)	37 (24%)
Total	502 (100%)	154 (100%)

When it came to better coordination of care and support, 393 out of the 657 (60%) that responded to this question, stated that having a 'lead professional to coordinate care and support for each individual' was their preferred way to do this.

In relation to the needs of specific groups of people accessing care and support, The Promise highlighted the importance of seeking the views of and reflecting the needs of children and young people and their families in relation to accessing support:

"Care experienced children, young people, adults and families told the Independent Care Review about a multitude of preferences for support and called for recognition that these might change depending on circumstance and relationships… Plan 21-24 describes the need to develop trusting relationships between families and those who provide support to them. Of particular importance is the need to ensure seamless transitions between different supports as circumstances for families change." (The Promise)

There were 44 Easy Read responses to this question. There was a relatively even split across all three answer options with around six in ten selecting a single professional who talks to them and then involves other people and a similar proportion selecting support from local community or voluntary organisations. Free text responses to the Q5 Easy Read question "Do you think the partnership way of working will improve access to care and support?", suggested that a single point of contact would be helpful and that the supported person should be at the centre of decision making.

Support planning

The Scottish Government stated in the consultation document that a critical aspect of the new approach is a single adult's plan and a single planning process. This is intended to cover all aspects of care planning from the point that it is identified that care and support may be needed, through to agreement of the care and support to be provided and beyond.

Nearly all (662 out of 676 respondents (98%)) of the participants in the consultation who responded to Q5 "How should support planning take place in the National Care Service" agreed or strongly agreed that: "Support planning should include the opportunity for me and/or my family and unpaid carers to contribute". Furthermore, a large majority (595 out of 672 respondents (89%)) agreed or strongly agreed that " If I want to, I should be able to get support from a voluntary sector organisation or an organisation in my community, to help me set out what I want as part of my support planning".

Q5. How should support planning take place in the National Care Service? For each of the elements below, please select to what extent you agree or disagree with each option:

Q5a. How you tell people about your support needs

	Strongly disagree	Disagree	Neither/ nor	Agree	Strongly agree
Support planning should include the opportunity for me and/or my family and unpaid carers to contribute (676)	7 (1%)	4 (1%)	3 (0%)	75 (11%)	587 (87%)
If I want to, I should be able to get support from a voluntary sector organisation or an organisation in my community, to help me set out what I want as part of my support planning (672)	11 (2%)	15 (2%)	51 (8%)	157 (23%)	438 (65%)

In terms of what a support plan should focus on, there were high levels of agreement that: "decisions about the support I get should be focused on the outcomes I want to achieve to live a full life (637 out of the 671 (95%) that responded to this question) and that "decisions about the support I get should be focused on the tasks I need to carry out each day to be able to take care of myself and live a full life (560 out of the 666 (84%) that responded to this question).

Q5b. What a support plan should focus on:

	Strongly disagree	Disagree	Neither/ nor	Agree	Strongly agree
Decisions about the support I get should be based on the judgement of the professional working with me, taking into account my views (667)	27 (4%)	100 (15%)	107 (16%)	209 (31%)	224 (34%)
Decisions about the support I get should be focused on the tasks I need to carry out each day to be able to take care of myself and live a full life (666)	16 (2%)	39 (6%)	51 (8%)	211 (32%)	349 (52%)
Decisions about the support I get should be focused on the outcomes I want to achieve to live a full life (671)	4 (1%)	4 (1%)	26 (4%)	159 (24%)	478 (71%)

Q5c addressed whether the support planning process should differ depending on the level of support required. Around 650 people responded to these questions. Three quarters agreed or strongly agreed that "I should get a light-touch conversation if I need a little bit of support; or a more detailed conversation with a qualified social worker if my support needs are more complex" (481 out of the 648 (74%) that responded to this question).

Q5c. Whether the support planning process should be different, depending on the level of support you need:

	Strongly disagree	Disagree	Neither/ nor	Agree	Strongly agree
I should get a light-touch conversation if I need a little bit of support; or a more detailed conversation with a qualified social worker if my support needs are more complex (648)	17 (3%)	68 (11%)	82 (13%)	225 (35%)	256 (40%)
If I need a little bit of support, a light-touch conversation could be done by someone in the community such as a support worker or someone from a voluntary sector organisation (647)	30 (5%)	110 (17%)	115 (18%)	249 (39%)	143 (22%)
However much support I need, the conversation should be the same (652)	32 (5%)	140 (22%)	101 (16%)	157 (24%)	222 (34%)

These findings might suggest that respondents would welcome more tailored support depending on the complexity of their needs as levels of agreement are highest in response to this statement but that they would also welcome consistency in the conversation. There were 349 responses to the "other" option at Q5. Common themes or comments here tended to relate to the definition of need and to tailored approaches:

"Someone who seems to only need "a little bit of support" may actually have more complex issues. Who will decide the level of need?" (Person accessing care and support)

"All conversations should be tailored to the individual… having "the same" conversations across Scotland won't be appropriate where people have learning difficulties etc. Everything being clear for every individual is key." (Person accessing care and support)

Comments here also tended to reference the specific needs of the person accessing care and support and the fact that these needs should be taken into account into any consultation or appointment and that, where required, a multidisciplinary team should be deployed:

"Members agreed that support planning should include the opportunity for the person accessing care and support/their family and unpaid carers to contribute and they should be able to get support from a voluntary sector organisation or an organisation in their community, to help them set out what they want as part of their support planning." (South Lanarkshire Adult and Child Protection Committee)

"Support planning must be multidisciplinary, including nursing assessment, where a person has complex needs or in cases where they are already receiving support from another agency, including for their healthcare needs - in which case support planning must involve each relevant agency." (Royal College of Nursing)

Q6 The Getting It Right For Everyone National Practice model would use the same language across all services and professionals to describe and assess your strengths and needs. Do you agree or disagree with this approach?

There was also strong agreement with the approach that the Getting It Right For Everyone National Practice model would use the same language across all services and professionals to describe and assess strengths and needs (Q6a) with 428 out of the 498 (86%) of individuals that responded to this question and 178 out of the 199 (89%) of organisations who responded, agreeing with this statement. There were 520 respondents who gave an explanation for their response at Q6a. Of those who agreed, common reasons given included:

• A model would limit misunderstanding and confusion caused by different languages, jargon and acronyms currently used by different professionals
• It would create a more consistent system of communication and equity in care requirements
• While the aim of consistency was welcome, there was also a recognition that flexibility was required to take account of individuals and their own circumstances
• GIRFEC was an example of a good benchmark for what currently works in children/family care across professions

In the Easy Read responses, a large majority of respondents, 38 out of 48 respondents (79%), suggested that their main priority for support planning (Q4) was a "focus on the things they want to live a full life". This was followed by support focused on daily tasks to allow them to take care of themselves and live a full life (28 out of 48 respondents (58%)). A similarly large majority, 26 out of 30 respondents (87%), thought that a partnership way of working would improve access to care and support.

Q7 The Getting It Right for Everyone National Practice model would be a single planning process involving everyone who is involved with your care and support, with a single plan that involves me in agreeing the support I require. This would be supported by an integrated social care and health record, so that my information moves through care and support services with me. Do you agree or disagree with this approach?

There was also very strong support for a single plan under the Getting It Right For Everyone National Practice model alongside an integrated social care and health record (Q7a). Over 700 respondents answered this question and 446 out of the 502 (89%) individuals and 184 out of the 198 (93%) organisations agreed with this approach. Nearly 500 respondents (485), provided a reason for their response. In general, agreement was based on: the need to reduce complexity; creating a clear and transparent process, while acknowledging the uniqueness of each individual and their situation; easing transitions; and providing continuity of care.

Challenges were also noted around the use of organisations' separate IT systems and data protection concerns. In general, there was a view that the process should be simplified in terms of interactions with different practitioners, data sharing and language.

"Coordinated professional interactions limit the number of professionals dealing with a family, meaning they give a coordinated response possibly sooner as long as the 'power to act' is devolved to individuals with sensible monitoring of process and outcomes." (Person accessing care and support)

"I forgot the number of times I had to recount my mother's story, and due to her dementia, she would often lie about her condition." (Person accessing care and support)

"At present, people report that the variety of language used across the social care sector is complex and frequently confusing. Greater streamlining of language would reduce that confusion for people, especially people transitioning from children and young people's services to adult social care, and for people moving from one local authority to another." (The Alliance)

The Scottish Human Rights Commission (SHRC), the Equality and Human Rights Commission (EHRC) and the People-led Policy Panel, Inclusion Scotland, all highlighted that the language of independent living, equality and human rights should be part of GIRFE.

"We support the proposal for a new approach to planning care. In particular, we agree this should be rights-based, focused on putting the adult's wishes at the centre of decision-making and on improving outcomes. We need a values-driven approach that is built on co-production, recognises the right to independent living and guarantees practical support to help social care users make informed decisions." (EHRC)

Q8 Do you agree or disagree that a National Practice Model for adults would improve outcomes?

There were also very high levels of agreement that a National Practice Model for adults would improve outcomes, with 396 out of the 476 (83%) individuals that responded to this question and 148 out of the 170 (87%) organisations agreeing overall (Q8a). When asked why, those in agreement suggested it has the potential to offer a more fair system with continuity of care, consistency, equitability, more open communication and better outcomes for all - as long as this was a 'people focused' model.

"Yes, it would be good to see this consistently and meaningfully applied." (Person accessing care and support)

"If this works the way it is supposed to, then it would be a lot easier and less stressful for not only the claimant, but their family or friends, and hopefully it will mean a lot less lost paperwork or reports, and help with any needs that are required." (Person accessing care and support)

There was also a view that the necessary funding needed to be in place and implementation had to be done properly.

Rights to breaks from caring

Q9 For each of the below, please choose which factor you consider is more important in establishing a right to breaks from caring

In this section (Q9) respondents were asked a series of questions to select which factor in each question they considered more important when establishing a right to breaks from caring. There were four statements and respondents were asked to select from two statements or to state no preference. These statements were as follows:

• Standardised support packages versus personalised support
• A right for all carers versus thresholds for accessing support
• Transparency and certainty versus responsiveness and flexibility
• Preventative support versus acute need

Q9a. Standardised support packages versus personalised support

	Individuals	Organisations
Personalised support to meet need	366 (81%)	125 (82%)
Standardised levels of support	30 (7%)	2 (1%)
No preference	57 (13%)	26 (17%)
Total	453 (100%)	153 (100%)

Four in five, 366 out of the 453 (81%) individuals that responded to this question, agreed that 'personalised support to meet need' would be more important than 'standardised levels of support'.

Given the high level of support for "personalised support", there were only some differences amongst the respondent subgroups, but these should be treated with caution given the number of respondents in each category. There is some evidence that respondents who identified as local authority organisations were more positive about personalised support (14 of the 15 or 93% respondents to this question who identified as local authorities) compared to third sector organisations (45 out of 52 (86%) respondents to this question. Care should be taken however in interpreting these differences between groups given the limitations on the data analysis outlined in Chapter 2 of this report.

Q9b. A right for all carers versus thresholds for accessing support

	Individuals	Organisations
Universal right for all carers	291 (65%)	104 (69%)
Right only for those who meet qualifying threshold	118 (26%)	20 (13%)
No preference	40 (9%)	27 (18%)
Total	449 (100%)	151 (100%)

Around two thirds of individuals and organisations (65% and 69% respectively) agreed that 'universal right for all carers' for accessing support was preferable to a right only for those who meet a qualifying threshold (Q9b).

Q9c. Transparency and certainty versus responsiveness and flexibility

	Individuals	Organisations
Flexibility and responsiveness	229 (51%)	68 (46%)
Certainty about entitlement	137 (31%)	22 (15%)
No preference	83 (18%)	57 (39%)
Total	449 (100%)	147 (100%)

Half, 297 out of the 596 (50%) that responded to Q9c, believed that 'flexibility and responsiveness' was more important than 'certainty about entitlement'.

Q9d. Preventative support versus acute need

	Individuals	Organisations
Providing preventative support	286 (64%)	76 (52%)
Meeting acute need	35 (8%)	10 (7%)
No preference	122 (28%)	61 (42%)
Total	443 (100%)	147 (100%)

Just over six in ten, 363 out of the 591 (61%) people who responded to Q9d, believe that 'providing preventative support' was the more important factor compared to 'meeting acute need'.

At Q10, respondents were asked whether they preferred standardised entitlements, personalised entitlements or hybrid approaches. A slight majority of respondents, both individuals and organisations, preferred a hybrid approach combining a smaller, guaranteed minimum flat-rate entitlement which is easier to access for those in less intensive caring roles; alongside a more personalised entitlement, based on identified needs for those in more intensive caring roles. There were slightly more organisations in favour of a hybrid approach than individuals.

Q10. Of the three groups, which would be your preferred approach? (Please select one option.)

	Individuals	Organisations
Standard entitlements	31 (7%)	6 (4%)
Personalised entitlements	164 (37%)	51 (33%)
Hybrid approaches	245 (56%)	96 (62%)
Total	440 (100%)	153 (100%)

There were 454 respondents who gave a reason for their responses to this question. For the unpaid carers who selected "Group C - Hybrid approaches" (124 out of the 208 (60%) that responded to this question), the main reasons given were the need for flexibility and that "one size does not fit all ." Some highlighted the potential wider burdens on carers:

"Not all carers are recognised as such. For Covid vaccinations only those who were unemployed due to caring duties were considered carers initially. Many carers work full time in demanding jobs and have young people at home as well as their caring role. These carers are less likely to seek or receive help." (Unpaid carer)

A third of unpaid carers, 71 out of the 208 (34%) that responded to this question, preferred personalised entitlements. Again, flexibility was thought to be key and many emphasised that everyone has different needs and that prevention should also be taken into consideration.

"This would meet the needs of everyone. Currently you only receive help if you are deemed to be in crisis. A preventative approach supporting carers with regular breaks will prevent crisis and enable them to care for longer. This has to be better for the cared for person, the carer and social care too (financially)." (Unpaid carer)

There were no clear or meaningful differences in response by organisation type to Q10.^[1]

Public Health Scotland also supported a personalised approach:

"To meet the needs of the citizen receiving care and their carers, the personalised care plan needs to take full account of a carer's needs as well as the recipient of care. Whether that is part of the care recipient's plan or a separate plan for the carer is a matter to resolve in designing the service delivery model. Either way, a formal process for recognising and meeting the needs of carers will be needed which should consider the type and detail of support and fair access to resources to meet their needs." (Public Health Scotland).

Carers Scotland (through the Carers Parliament) agreed that a right to a break should be a universal right but raised concerns about a flat-rate entitlement given the likely demand and the fact that the " the resource available would have to be spread very thinly due to the large number of carers concerned ." Carers Scotland were also concerned about the complexity of the current system of assessment and use of eligibility criteria and the lack of availability of suitable provision.

"Having a right to a break is rather meaningless if there isn't the support or services available to enable people to claim this right." (Carers Scotland)

There were a number of respondents to the Easy Read consultation who replied to the open ended question "Do you think everyone should have the same support to take a break from caring? Should support be personalised to a person's needs, or should it be a mix of both?" (Q6). There was a balance of views between preferring a personalised approach and a hybrid approach, with the most common reason being that respite needs can be very different and that this should be taken into account.

Using data to support care

There was strong support for a consistent, integrated and accessible electronic health and social care record and for it to be shared across support services.

Q11. To what extent do you agree or disagree with the following statements?

	Strongly disagree	Disagree	Neither/ nor	Agree	Strongly agree
There should be a nationally consistent, integrated and accessible electronic social care and health record (688)	23 (3%)	27 (4%)	45 (7%)	200 (29%)	393 (57%)
Information about your health and care needs should be shared across the services that support you (686)	24 (4%)	36 (5%)	39 (6%)	208 (30%)	379 (55%)

The table above presents the views of the 688 individuals and organisations who responded to Q11a, "There should be a nationally-consistent, integrated and accessible electronic social care and health record": 390 out of the 459 (85%) individuals and 201 out of the 227 (89%) organisations who responded to this question, agreed or strongly agreed.

Respondents to Q11b "Information about your health and care needs should be shared across the services that support you", also showed strong support in favour (384 out of the 461 (83%) individuals and 201 out of the 223 (90%) organisations who responded to this question, agreed or strongly agreed).

Both individuals and organisations tended to agree that care services and other relevant parties should be required by legislation to provide data to the NCS, with a slightly larger proportion of organisations in agreement with the proposals. There was no real difference in views across individual and organisational groups.

Q12. Should legislation be used to require all care services and other relevant parties to provide data as specified by a National Care Service, and include the requirement to meet common data standards and definitions for that data collection?

	Individuals	Organisations
Yes	367 (83%)	168 (87%)
No	78 (18%)	26 (13%)
Total	445 (100%)	194 (100%)

There were 452 respondents who gave a reason for their response at Q12. Common comments included: balancing the need for data in accordance with data protection legislation and protecting personal data from unnecessary usage and cyber security concerns. While the ethical use of personal data was a major theme, there were also concerns around the practicalities of implementing a nationwide robust IT system.

These views were shared across most stakeholder groups. Of those who disagreed with legislative changes, the main themes related to: the current IT systems; data protection and security; and localisation. Specific concerns related to:

Limitations in the existing IT infrastructure, including a perceived lack of an interface between different IT systems

• Historic implementation issues and the need for time and resources to establish the right way forward
• Cybersecurity risks and the need to protect the human rights and privacy of people accessing care and support

"Anyone believing that a huge national database is always secure and will never be misused is extremely gullible. The proposal would be a huge security risk and sort of breach the human rights of Scottish citizens." (Person accessing care and support)

"Significant work has been done over the last 20 years in trying to manage data effectively and to reduce multiple requests to the sector. To date this has not entirely succeeded, often due to the Government's own desire for specific information at particular points in time. Standard data sets and data expertise are absolutely necessary. IT support for existing systems or changes over to better systems could support a strong cultural shift which would be more effective in resolving this problem than the blunt instrument of legislation which could have the unintended consequence of diverting resources from people who need it and undermining supportive relationships built on trust." (Scottish Association of Social Work)

Some respondents suggested that there are many considerations in implementing the correct legislation and supporting framework, with some suggesting that:

• The data needs to be available, current and accessible at all times as well as secure
• Social and health care staff need access to IT equipment and training

Specific comments here included:

"The accessibility and maintenance of care files must be key to the implementation of the data standards." (Caraidean Uibhist)

"The expansiveness of the approach in the consultation document regarding "a nationally consistent, integrated and accessible electronic social care and health record" could be problematic. A balance needs to be found between the need for the National Care Service to use data effectively to ensure the best use of funds and resources to provide the best possible care and support; and the fundamental requirement that an individual's personal data is safeguarded and access continually complies with legislation." (Turning Point Scotland)

"The most important thing is ensuring easy, safe and secure sharing is possible; that, provided they want to, citizens can share information about health and care needs with the minimum of friction, effort, risk and cost across the services they use to receive care and support." (Mydex CIC)

"Our members highlight the need for ethical considerations to ensure the correct balance between people's right to privacy and their right to safety and protection. Additionally, members expressed concern about the cost involved in a new system where monies could be better spent in social work and social care, failings of current IT systems, their lack of integrative functionality and whether a national system on this scale is, in fact, affordable and deliverable even where they did support it." (Scottish Association of Social Work)

Q13.Are there alternative approaches that would address current gaps in social care data and information, and ensure a consistent approach for the flow of data and information across the National Care Service?

There were 400 responses to the question: "Are there alternative approaches that would address current gaps in social care data and information, and ensure a consistent approach for the flow of data and information across the National Care Service?" (Q13).

The main suggestions raised were in relation to the sharing of data across the National Care Service and the National Health Service. Common themes also included the importance of a single source of data, e.g. a 'digital health record' which follows the same data structure across both the NCS and NHS and which should align to allow different professionals across healthcare, e.g. GP and social workers, to work together to achieve the best possible care for the individual. There were also concerns raised in relation to the security of this single source of data, as well as concerns with regards to funding, safeguarding, local variations in service offering and the need for investment in supporting IT systems.

"Introducing and paying for an up to date system that is accessible to all professionals and is easy to use. Lack of funding over years has had a significant impact on what people have been able to share. 'National Data Guardian for Health and Care, review of Data Security, consent and opt outs' is an excellent publication and assume such documents will be used to inform the approach going ahead. Other things presently around e.g. the Caldicott principles all influence practice. So I don't see the need for further legislation." (Social worker and person accessing care and support)

Localisation is another key consideration for several respondents, including the availability of, and access to, services in remote areas:

"A single patient record in healthcare (the NHS) would be a good start. The ability to log onto Local Authority systems, for example Care First, would be a good starting point, even if this is read only. Start small, start local, do not go for the 'one system will fix everything idea'." (Person accessing care and support and works, or has worked, in the management of care services)

"There are differences in parts of Scotland - e.g. the concept that someone's assessment just moves with them if they move doesn't work if they move from Glasgow city to a remote island in the Highlands or Argyll & Bute. You can't move to Islay or Jura and have three days of day service attendance, just because you had that when you were in the city. So, consistency is not as simple as just passing on assessments when you move." (Social worker)

There are also considerations needed as to the data that is required to support people accessing care and support as efficiently as possible versus 'all' personal health and social care data.

"Being able to access the right data at the right time for an individual would greatly enhance the quality of support they receive and facilitate immediacy when needed. However, the focus should be on accessing the information needed at the correct time. This does not mean everyone involved in the care of an individual always has access to all of their data, all of the time as this is contrary to an individual's rights and freedom under the Data Protection Act 2018 and UK GDPR." (Turning Point Scotland)

The Coalition of Care and Support Providers in Scotland (CCPS) noted the data requirements on providers and that there should be clarity on what information should be collected and used.

A majority of respondents who used the Easy Read format agreed that their information should be shared across the different services they use (29 out of the 38 (76%) that responded to this question) (Q7). When asked why, several stated that it would reduce the -time and stress associated with re-sharing the same information with different service providers and ultimately improve care. Some, however, highlighted that not all information should be shared and that consent should be gained from the supported person.

Complaints and putting things right

Q14. What elements would be most important in a new system for complaints about social care services? (Please select three options)

	Individuals	Organisations
Charter of rights and responsibilities, so people know what they can expect	292 (65%)	128 (64%)
Single point of access for feedback and complaints about all parts of the system	283 (63%)	89 (45%)
Consistent model for handling complaints for all bodies	257 (57%)	112 (56%)
Clear information about advocacy services and the right to a voice	236 (52%)	110 (55%)
Clear information about next steps if a complainant is not happy with the initial response	208 (46%)	81 (41%)
Addressing complaints initially with the body the complaint is about	162 (36%)	81 (41%)
Other	35 (8%)	41 (21%)
Total	450 (100%)	200 (100%)

There was a relatively high level of agreement for a charter of rights and responsibilities so people know what they can expect, with around two thirds of respondents to this question selecting this option. There was also support for a single point of access for information on making a complaint or giving feedback about social care. Organisations placed slightly more emphasis on advocacy services. There were 450 responses from individuals and 200 organisations to this question.

People accessing care and support were slightly more likely to agree that a charter of rights and responsibilities would be important for them, as well as 'clear information on next steps if a complainant is not happy with the initial response' but less so with 'addressing complaints initially with the body the complaint is about' while those who are, or have been, a social worker placed more importance on 'consistent models for handling complaints for all bodies'.

"We believe that the opportunity to create an independent, accessible mechanism for review, supported by additional routes of access to justice, including independent advocacy, should be explored in the creation of the National Care Service. " (SHRC)

Q15 Should a model of complaints handling be underpinned by a commissioner for community health and care?

Three quarters of those who responded to Q15a "Should a model of complaints handling be underpinned by a commissioner for community health and care?", were in agreement (416 out of 573 respondents (73%)). Individuals tended to be more in favour than organisations (307 of 409 (75%) individuals compared to 108 of 163 (66%) organisations. There were 362 respondents who gave an answer for their response.

Some of the reasons given by those that agreed were that it would:

• Give people accessing care and support 'a voice'
• Provide clarity and assurance that complaints would be addressed
• Be seen to be objective, independent and the overarching oversight would allow someone to guide the changes, seen as necessary by some, within the system
• Accountability was a common theme throughout

People accessing care and support were slightly more likely to value a commissioner appointed for community health and care. Similarly, organisations from the private sector who provide care or support services appear to be more likely to favour a commissioner appointed for complaints handling than other organisation types^[2].

Some of the reasons given by those who disagreed were that:

• It would create another layer of bureaucracy
• It is better to sit with an independent body, such as the Care Inspectorate, who has the legal power of enforcement and inspectors to ensure this happens
• If the right people were in the right post and if there was clear information about advocacy services and a right to a voice, there should not be a need for a commissioner
• It should be the responsibility of the Health and Social Care Minister

Q16 Should a National Care Service use a measure of experience of those receiving care and support, their families and carers as a key outcome measure?

There was also very strong support at Q16a (Should a National Care Service use a measure of experience of those receiving care and support, their families and carers as a key outcome measure?) for using a measure of experience in demonstrating how feedback and complaints have been taken on board and actioned. Overall, 370 out of the 419 (88%) individuals that responded to this question, and 184 out of the 193 (95%) organisations who responded, were in agreement.

"In principle we agree that measuring how successful or not a NCS is should include a measure based on the experience of people who use it. If lived experience is to be at the centre of a NCS then it, alongside equality and human rights conventions and the language of independent living, must be embedded in all aspects, as recommended by the IRASC." (People-Led Policy Panel, Inclusion Scotland)

There were 385 respondents who gave a reason for their answer at Q16. Key outcome measures are considered important for those receiving care and support, their families and carers. However, many respondents did understand and acknowledge that this is not the only metric when measuring experience.

Those who disagreed that the National Care Service should use a measure of experience as a key outcome measure (58 out of the 613 (10%) that responded to this question) believed that it was subjective and therefore hard to assess and quantify.

"This has been tried before and those who think it's a good service do not respond and those who do not like something complete the form and make the statistics incorrect. Has the government learned nothing from the Quality of Outcomes Framework?" (Person accessing care and support and has worked in the management of care services)

"In every complaint there are those that are happy with an outcome and those that are not. Experience is subjective and not always reflective of the whole." (Person accessing care and support and social worker)

"The proposal lacks definition. Without knowing what dimension or component of 'experience' is being referred to, how it would be measured and what outcome it would represent, it is impossible to make any informed comment on whether this would assist in measuring the successful implementation or quality of services. In general terms, we would regard gathering feedback on the experience of those using social care as a key component of the cycle of learning from complaints and service improvement, not just as an element of the complaints process." (Glasgow City Health and Social Care Partnership)

"This measure of experience should be included in the overall feedback on assessment of the care and support. The "customer" reality from these key groups is real and reflects how they feel about their care and its outcomes and is therefore important. However, it can have a subjective element to it, and therefore we do not support its inclusion as a key outcome measure." (Community Pharmacy Scotland)

Amongst the respondents who used the Easy Read format, there was a relatively consistent view about what would improve a new system of complaints (Q8). Around two thirds of these respondents agreed that:

• There should be a charter of rights and responsibilities that says what people can expect from the service
• There should be a single point of access for complaints about all of the system
• The model for handling complaints should be the same for all services
• There should be clear information about advocacy services
• There should be clear information about next steps if a complainant is not happy

Several respondents to the Easy Read consultation also noted the importance of an independent body to oversee complaints.

Residential care charges

There were 459 responses in regard to self-funding care home residents' contribution towards accommodation-based costs. Most (over 64%) were in agreement that residents should contribute in some way to basic costs such as food and rent, however there was more of a mixed response to on site facilities such as entertainment, laundry and utilities. There was less agreement that care home upkeep should be something for which contributions should be expected (46% or less for each of the following), such as cleaning, food preparation, transport, maintenance, furnishings and equipment.

Q17. Most people have to pay for the costs of where they live such as mortgage payments or rent, property maintenance, food and utility bills. To ensure fairness between those who live in residential care and those who do not, should self-funding care home residents have to contribute towards accommodation-based costs such as (please tick all that apply):

	Individuals	Organisations
Food costs	261 (72%)	61 (64%)
Rent	234 (64%)	58 (62%)
Leisure and entertainment	206 (57%)	51 (54%)
Laundry	191 (53%)	51 (54%)
Utilities	188 (52%)	53 (56%)
Cleaning	168 (46%)	45 (48%)
Food preparation	166 (46%)	36 (38%)
Transport	163 (45%)	44 (47%)
Maintenance	148 (41%)	46 (49%)
Furnishings	128 (35%)	36 (38%)
Equipment	87 (24%)	27 (29%)
Other	51 (14%)	31 (33%)
Total	364 (100%)	94 (100%)

There were 350 other responses and comments provided in relation to Q17. Other suggestions in relation to self-funding care home residents and their contributions included views that:

• Care home costs should be similar to that of someone who is still able to live independently. Everyone has a 'right to care'
• Certain life-limiting health conditions should negate the need for payments, such as dementia
• Comparisons made to health care (where there are none of these costs) versus care homes and the need to balance this within the care home sector

Comments from respondents in relation to this issue included:

"No - people have worked hard all their days and contributed to the system via tax...why should they be penalised because they have chosen to use their money differently. Why should they sell their house etc. to pay top up fees. Where is the fairness and equity in that?" (Person accessing care and support and social worker)

"If the NCS is to be an equivalent of the NHS, it should be free at the point of delivery. Means testing should not be part of its process. Being able to 'afford to pay' is not factored into cancer treatment, heart surgery etc. so ethically we can see no reason why people who experience general physical debility, chronic illness or degenerative brain disease should be treated differently. In terms of fairness and equality matters, we believe the proper way to deal with inequalities in wealth is through death duties which apply to everyone… We therefore believe that, even on a transitional basis, provision of food, utilities etc. should be free. No-one in residential care should be left with less than the current basic rate of state pension." (Common Weal)

"Self-funding care home residents should pay the equivalent of whatever the national average is paid by those not living in residential care. This could mean those who had been maintaining a high living cost in a large house would continue to do so as opposed to someone leaving a bedsit. Councils have already set the accommodation costs allowable by property size so this could be used for people as a basis for charging. The costs of Care Homes have risen substantially in the last ten years, but the council contribution has not risen in line with this." (Person accessing care and support)

In the Easy Read questions relating to fees and funding, the highest levels of agreement around resident contributions were:

• Food (16 out of 35 respondents (46%))
• Utilities (12 out of 35 respondents (34%))
• Leisure and entertainment (13 out of 35 respondents (37%))
• Cleaning (12 out of 35 respondents (34%))

Q18 What would be the impact of increasing personal and nursing care payments to National Care Home Contract rates on self-funders, care home operators, local authorities and other stakeholders?

The consultation document noted that free personal and nursing care payments for self-funders are generally paid directly to the care provider on their behalf (Q18). Respondents were therefore asked what would be the impact of increasing personal and nursing care payments to National Care Home Contract rates on self-funders, care home operators, local authorities and other stakeholders.

There were 333 responses to the questions on self-funders and respondents expressed a variety of views on this question. Some common views were:

• A reduction in overall costs for the self-funder
• Protection for their 'capital' such as homes
• An increase in affordability for them and/or family
• More equality and more choice
• Concerns with regard to it actually imposing more costs to the self-funder if not managed correctly. This could include, for example, care homes putting up prices as a result, or self-funders effectively subsidising others care.

There were 311 responses to the question on care home operators. Respondents tended to suggest that it would:

• Allow for improved care, facilities and standards
• More opportunity to increase wages therefore impacting staff turnover and applications
• Potential to decrease costs for residents, 'bridging the gap'

There were 280 responses to the question in relation to local authorities. Some respondents suggested that the proposed changes would:

• Incur increased costs however would result in a more equitable system for all residents
• Require increased funding in order for the Local Authorities to be able to do this
• Result in more oversight and control as standards and approaches could be centralised

There were 137 comments in relation to the final open question in this section. These comments tended to reiterate the above points or to give personal examples of the impact of the current arrangements on them or their family. These included, but were not limited to: financial difficulties around affording care, such as respondents having to sell their home in order to afford care. Some respondents highlighted that their family members with dementia were at a disadvantage with how their care was financed and treated, compared to other illnesses.

Q19 Should we consider revising the current means testing arrangements?

In terms of revising current means testing arrangements (Q19a), respondents were very much in agreement that this should be considered, with 292 out of the 376 (78%) and 86 out of the 101 (85%) individuals and organisations indicating so. There were 350 open ended responses to this question. Other suggested considerations were:

• Revised capital limits, for example by bringing them in line with Wales
• Means testing in a care setting was considered to be unfair especially with regards to including the family home as capital
• Modelling based on the NHS with regards to essentials, such as food costs and preparations and cleaning