Publication - Consultation paper

Carers strategic policy statement: consultation

Published: 30 Sep 2019

The Carers Strategic Policy Statement is intended to maximise the benefits from national policies and approaches intended to support carers (including major ongoing reforms such as implementation of the Carers (Scotland) Act and the development of our new social security powers for carers). It aims to do this by connecting a wide range of existing policies.

64 page PDF

2.5 MB

64 page PDF

2.5 MB

Contents
Carers strategic policy statement: consultation
3. Health and social care support

64 page PDF

2.5 MB

3. Health and social care support

Strategic Outcome
People who provide unpaid care are supported to look after their own health and wellbeing, including to reduce any negative impact of their caring role on their own health and wellbeing. (National health and wellbeing outcome 6)

3.1 Why this is important
A great many people in Scotland already rely on the support of unpaid carers, who make a major contribution to our social care system. Demand for social care support is growing faster than our traditional services were designed for. In this context, the role and contribution of carers will be even more critical in the future. This is why the reform programme for adult social care is required to adapt current models of service and support to meet the new levels of need and complexity.

There is a close relationship between social care support for carers and those they look after. Supporting carers in their own right improves outcomes for them and the person they are caring for. Sustaining caring relationships in this way has major benefits for our health and social care system.

3.2 Our approach
Our continuing priority is to embed carers' rights to support under the Carers Act. The need for high quality breaks to benefit both parties is important to our approach to supporting carers, both under the Act and through the voluntary-sector Short Breaks Fund.

The guiding principles of personalisation and prevention (see Chapter 1) will help deliver the best outcomes for individuals and the system as a whole. These principles are at the core of self-directed support as Scotland's approach to statutory social care support. They and the Carers Act itself are also key elements of our wider work to reform adult social care to design a system fit for the future. Part of that reform work will also explore issues of charging for social care, which are often a key concern for carers.

Many aspects of our wider health priorities are also relevant to carers. Our approaches to person-centred hospital visiting and to involving carers in hospital discharge will be important when the person they care for is in hospital. On a day to day basis, carers work with and rely on multi-disciplinary teams within primary care services to support the people they care for. So carers will benefit from our vision for the future of primary care, which is intended to deliver change to better meet evolving needs and demands.

We recognise that if an intensive caring role goes on too long without support it can lead to increased risks to the carer's health and wellbeing and can give rise to risks associated with the person that they care for. Our approach is that we promote the support and protection of people to keep them well and safe from harm.

Our housing policies are also relevant for carers. We recognise that living in the right home with the right advice and support can be the key to enabling people to live safely and independently at home. If the home of the cared-for person is suited to their needs this can make caring for them easier.

Alongside these general policy approaches to health, social care and housing support for carers and the people they care for, our policies and strategies for supporting those with particular conditions also recognise the key role of carers.

3.3 Carers Act

3.3.1 Carers Act – overview
The Act took effect in April 2018. It puts in place a system of carers' rights designed to listen to carers; expand and transform carer support; and prevent problems – helping sustain caring relationships and protect carers' health and wellbeing.

This includes each carer's right to a personalised plan (an adult carer support plan or young carer statement) to identify what is important to them, for example, returning to work or undertaking studies or training. The plan will also identify carers' needs for support and contain information about:

  • the nature and extent of the care provided and the impact on the carer's wellbeing and day-to-day life;
  • the extent to which the carer is able and willing to provide care;
  • emergency and future care planning.

Carers have the right to support to meet their eligible needs. Local authorities must consider whether that support should include a break from caring and record these decisions in the plan.

We have already developed extensive guidance and resources and invested through local authority budgets to support local implementation.

3.3.2 Strategy and leadership
Given the scale of change involved, we recognise the long term commitment and partnerships needed to ensure the Act delivers the full benefits to carers.

That is why we are working with the Carers Act Implementation Steering Group bringing together carers, carer organisations, COSLA, health and social care partnerships and others to support and guide implementation. The group has developed a national plan for implementing the Carers Act[24]. The plan covers six key priorities including workforce development; awareness and communications; and measuring progress and impact.

3.3.3 Workforce
Some of the key actions under the national plan for implementing the Carers Act are to ensure people who work in health and social care and education have the skills, knowledge and confidence to identify, support and involve carers in line with the Act.

The Scottish Social Services Council (SSSC) is also working on the design of social work frameworks with a focus on carers' rights. This will involve input to the Post Qualifying Standards for Social Work, as well as an assessment model for the Standards. SSSC also developed a 'Personal Outcomes Planning eBook'[25] to support practitioners undertaking adult carer support plans and young carer statements.

3.3.4 Third sector
We recognise that third sector organisations have a central role in delivering local carer support. We have funded the Coalition of Carers in Scotland to help local carer support organisations build capacity to deliver under the Carers Act and strengthen collaboration between these local carer organisations and their statutory partners. Through the Scottish Council for Voluntary Organisations, we have provided small grants to help local carer organisations across Scotland update their resources, technology and systems to gear up for the Carers Act[26].

3.3.5 Measuring progress
We acknowledge the need to measure progress and impact of the Act, through the support provided locally. The 'Carers Census'[27] is collecting information from the local integration authorities and carer organisations with responsibility for implementing the Act. It aims to establish the number of carers receiving support and what that support looks like, as well as an overview of progress across the country.

3.4 Breaks from Caring

3.4.1 Carers Act
Personalised, flexible short breaks can make a real difference for carers to recharge their batteries - helping sustain caring relationships and enabling carers to have more of a life of their own.

Local authorities and integration authorities have a specific duty to consider whether support to a carer should include a break from caring[28]. We have funded the Short Breaks Market Shaping Think Tank - an action learning project developed in partnership with Shared Care Scotland and iHub - to explore and develop strategies for shaping local markets of short break provision. They will produce a blueprint that can be shared with others involved in shaping sustainable markets in social care.

Integration Authorities also have a duty to develop and publish a Short Breaks Services Statement - to help people understand what short breaks are available to them locally and nationally. The information must be accessible to, and proportionate to the needs of, the persons to whom it is provided (see section 2.4.2).

3.4.2 Innovative approaches to short breaks
Alongside statutory obligations under the Carers Act as outlined above we provide a £3 million non-statutory fund to make a range of short breaks available through the third sector. The Short Breaks Fund is provided on a rolling annual basis through four programmes designed to provide preventative breaks for carers alongside (and not in place of) statutory support.

3.4.2.1 Better Breaks

This programme[29] provides 12 month grants to third sector organisations to develop and deliver short breaks projects and services for children and young people with disabilities (aged 20 and under), and their carers (adult carers and/or young carers).

3.4.2.2 Creative Breaks

This programme[30] provides 12 month grants to third sector organisations to develop and deliver short breaks projects and services for carers of adults (aged 21 years and over), carers of older people (aged 65 years and over), young carers (caring for children or adults), and those that they care for.

3.4.2.3 Time to Live

This programme[31] provides grant funding to carers organisations (usually carers centres) to develop and deliver micro grant schemes for carers of adults (aged 21 years and over), carers of older people (aged 65 years and older) and young carers. Time to Live enables carers to access funds and support to help them take short breaks that meet their needs.

3.4.2.4 Take a Break Scotland

This programme[32], provides direct grants to families of children and young people with disabilities to support personalised leisure activities or holiday breaks.

3.4.2.5 Respitality

Alongside the Short Breaks Fund programmes, Respitality[33] (respite+hospitality) which is delivered by Shared Care Scotland through funding from Scottish Government, encourages carers centres to build relationships with local businesses, such as hotels, B&Bs, restaurants and other leisure providers, resulting in the donation of a range of gifts, breaks and experiences to unpaid carers in the area free of charge. Hospitality and leisure organisations recognise the benefits of becoming carer aware and helping to promote their business in their own community. This provides carers with different break options and the potential for these one-off breaks to be a stepping stone into them accessing breaks regularly.

3.5 Options and decision making about social care

3.5.1 Self-directed support - overview
Self-directed support is Scotland's approach to social care support. It allows people and their carers to make informed choices on what their support looks like and how it is delivered. Greater control of their life and decision making leads to better health and wellbeing for carers and supported people. Self-directed support applies across all ages and user groups, including children and young carers.

For carers, a good experience of self-directed support can contribute to a life beyond caring for themselves and the person they look after. This can mean being able to participate in their communities and make informed and supported choices about their life.

The Social Care (Self-directed Support) (Scotland) Act 2013[34] requires local authorities to offer people who are eligible for social care a range of choices over how they receive their support. Self-directed support offers options to ensure everyone can exercise choice and control including:

  • A direct payment;
  • Funding given to a provider of your choice;
  • The council/Integration Authority can arrange a service for you; or
  • You can have a mixture of these options for different types of support.

Self-directed support is important for carers both in relation to support for themselves and support for the person they care for.

3.5.2 Self-directed support for the cared for person
The statutory guidance for the Carers Act makes it clear that carers should be involved in assessment for self-directed support options and decision-making for the supported person where appropriate.

This may involve a carer assisting the person they care for in decision making. The statutory guidance[35] which accompanies the Social Care (Self-directed Support) (Scotland) Act 2013 refers to the principles of supported decision-making in paragraph 7.23, 'Assistance with Decision making and Understanding'. Further guidance can be found in the Mental Welfare Commission for Scotland Good Practice Guide Supported Decision Making[36].

3.6 Charging for social care support

3.6.1 Support for carers
Carers should not be charged for carer support under the Carers Act. This is because the Carers (Waiving of Charges for Support) (Scotland) Regulations 2014 and the Self-directed Support (Direct Payments) (Scotland) Regulations 2014 require local authorities to waive charges for support provided to carers.

The statutory guidance for the Carers Act includes guidance on this. The Scottish Government, COSLA and social care practitioners have worked together to develop a series of examples[37] to help with interpretation of these rules.

3.6.2 Charging for adult social care
Personal and nursing care in Scotland is free for anyone who is assessed as eligible by their local authority, to receive this service, regardless of their age, income or circumstances. People may still be charged for adult social care support that is not classed as personal care. Charges for social care support are dependent on a financial assessment also carried out by the local authority which is means tested. The three main areas in relation to adult social care and charging are free personal and nursing care; residential care and non-residential care.

3.6.2.1 Free personal and nursing care

The Free Personal and Nursing Care guidance[38] sets out the framework of access to free personal care and/or nursing care to any adult who is found eligible by their local authority as needing both or either of these services. This guidance outlines the implementation of free personal and nursing care for those receiving care at home and for those living in a care home. Personal care services include personal hygiene such as bathing, showering and shaving or help with food preparation.

3.6.2.2 Residential care charging

The Charging for Residential Accommodation Guidance ("CRAG")[39] provides the framework for local authorities to charge for the residential care that they provide or arrange. This statutory guidance is updated annually.

3.6.2.3 Non-residential care charging

The Convention of Scottish Local Authorities ("COSLA") provides the non-statutory National Strategy & Guidance – Charges Applying to Non-residential Social Care Services[40]. This guidance provides a framework that aims to maintain local accountability and discretion of local authorities when charging for non-residential social care services. This guidance is also updated annually and issued to local authorities. Examples of things that are not classed as personal care and that can be potentially charge for include community meals, lunch clubs, day care, community alarms and help with shopping or housework.

3.6.3 Children's services – charging
Children are not charged for any social care support (either personal or non-personal) up to the point that they transition from children's social work services to adult social work services, which can be at any point between their 16th and 18th birthdays for children not looked after by local authorities.

3.7 Reform of adult social care support programme
The reform programme is based on the expertise and experiences of people who use social care support, carers, and those who work in the sector. It has followed a co-production process to develop a shared vision of what adult social care support will look like in future, and a set of priorities for making the changes required to achieve this.

The programme's priorities[41] include: a shared agreement on the purpose of adult social care support, with a focus on human rights; social care support that is centred on a person, how they want to live their life, and what is important to them – including the freedom to move to a different area of Scotland; and investment in social care support, and looking at how it is paid for in the future.

The programme includes a refreshed implementation plan for self-directed support. This plan contains actions to support and build on progress made in local areas to date towards more flexible and responsive social care support, co-produced with communities and supported people.

The programme will support change through a set of workstreams that will focus on particular elements. Carers may be particularly interested in the plans for:

  • The purpose and value of social care support and self-directed approaches
  • Consistent experience and expectations
  • Models of care and support
  • Investment in care and support

Carers often raise the cost of care and how it is paid for as an issue. Exploring this together will be a key part of the programme. Together, we will consider alternative models for funding care and support that will support us to achieve our aims for health and social care support into the future. This includes a proposal for a potential new national scheme to provide extra financial support to people with the highest social care support needs. In turn, this could make a significant difference to the support that carers receive in these caring situations.

Our models must enable investment at both ends of the scale – in high-end care and support needs, and in low-level and preventative support.

3.8 Caring roles and protecting people
If an intensive caring role goes on too long without support it can lead to increased risks to the carer's health and wellbeing and can give rise to risks associated with the person that they care for.

In situations where the caring situation is causing harm to the carer's wellbeing or that of the cared-for person, it may be necessary to provide additional support and in some cases to raise an adult support and protection[42] concern in line with local multiagency adult support and protection guidelines. See also section 5.4.2 on Keeping young carers safe from harm.

3.9 Carers and the NHS

3.9.1 When the cared-for person is in hospital
3.9.1.1 Visiting hospital
Hospital visiting arrangements are very important for carers when the person they care for is in hospital. We are working with NHS Boards to implement person-centred visiting across Scotland.

Person-centred visiting shifts most of the control over visiting to the patient and their immediate family, much like the arrangements commonplace in children's hospital settings. It is a partnership approach between patient, carers and clinical staff to ensure people stay connected, on their terms, to the people that matter most to them.

Organisations which have developed a patient and carer friendly culture which puts visiting under the control of the individual and their carer have demonstrated wider impact on safety and effectiveness. Positive impacts include reductions in falls and complaints, as well as improved patient and carer experience. There is growing evidence of the benefits of allowing people better access to carers while they are in hospital, for patients as well as staff and the Programme For Government[43] 2018-19 contains a commitment to person-centred, flexible visiting across our NHS by 2020.

There are already good examples of flexible, person-centred visiting across Scotland. We are engaging with Boards to help drive implementation and supporting them to test and spread improvements to person-centred visiting.

3.9.1.2 Leaving hospital
As highlighted in Chapter 2, NHS Boards have a statutory duty to involve carers in decision making about when the person they care for leaves hospital.

We are working with NHS Education Scotland and the Scottish Social Services Council to refresh the Equal Partners in Care[44] (EPiC) resource and to evaluate projects in health boards exploring approaches to involve carers in the decisions around the hospital discharge of the person they care for. This should lead to more successful discharges with carers who are better equipped to care for the person once they leave hospital.

3.9.2 Primary Care and GPs
Primary care is the first point of contact with the NHS and is where around 90% of all health contacts in Scotland take place[45]. Primary care is often made up of multi-disciplinary teams including General Practitioners (GPs), community nurses, dentists, pharmacists, allied healthcare professionals, social workers, social care staff, the voluntary sector and other specialists.

Carers rely on many of these services on a day to day basis to support the people they care for. These services are also well placed to identify carers and put them in touch with sources of carer support. This section highlights particular opportunities.

3.9.2.1 Vision for Primary Care
The Scottish Government's vision for the future of primary care services is for these multi-disciplinary teams to work effectively together to support people in the community and free up GPs to spend more time with patients in specific need of their expertise. We are already working to transform primary care in order to develop new ways of working that will help to put in place long-term, sustainable, integrated change to better meet evolving needs and demands[46]. This includes:

  • Putting general practice and primary care at the heart of the healthcare system.
  • Ensuring people who need care are more informed and empowered than ever, with access to the right person at the right time, and remaining at or near home wherever possible.
  • Developing multi-disciplinary teams in every locality, both in and out of hours, involved in the strategic planning and delivery of services.

3.9.2.2 Pharmacies
The community pharmacy network is located at the heart of our communities and provides a range of pharmaceutical care and support to patients and their carers. The pharmacy team has a unique and specialist knowledge of medicines and is well placed to support carers with advice on the safe use of medicines and to help self-manage any care needs.

In some cases young carers may be responsible for collecting prescribed medicines from the community pharmacy on behalf of the person they care for. It is important that the pharmacist and the pharmacy team help and advise the young carer in the safe use of medicines[47].

3.9.2.3 GP receptionists
As part of the Scottish Government's vision of primary care, the role of the GP receptionist is evolving. As part of their new care navigation role, the receptionist will have a conversation with the patient or carer to establish what the problem might be in order to support the patient to see the right clinical professional.

This approach values the carer's knowledge of the cared-for person's condition and support better health outcomes. If the carer presents as a patient in their own right at the GP practice, then their own needs will be captured as part of these conversations, and the receptionist would direct the carer to the appropriate support.

3.9.2.4 Community link workers
The Scottish GP Contract, introduced last year, expands the multi-disciplinary team that supports GPs to improve patient care and reduce GP workload. We are investing to increase the number of other health professionals working in primary care.

As part of this reform, we committed to increasing the numbers of community link workers (CLW) by at least 250 by the end of this parliament. A CLW is a generalist practitioner based in or aligned to a GP practice or Cluster who works directly with patients to help them navigate and engage with wider services. Their purpose is to improve patient health and wellbeing, reduce pressure on general practice and tackle health inequalities.

A CLW offers non-clinical support to patients, enabling them to set goals and overcome barriers, in order that they can take greater control of their health and wellbeing. They support patients to achieve their goals by enabling them to identify and access relevant resources or services in their community. A CLW also maps local services, engaging with and developing productive relationships with these services including keeping informed of the status of existing and new services.

A CLW's knowledge of local services should include knowledge of local carer organisations and support, which will be dependent on the local area and the needs of the individual. Currently, CLW's are targeted in areas of deprivation. Sometimes caring can arise from a lack of choices and exacerbated by inequalities of low incomes and poor health.

3.9.2.5 Flu vaccinations
Adult and young carers are entitled to free seasonal flu vaccination between October and March from their GP to protect them and the people they care for from the effects of seasonal flu. Carers should contact their GP to book an appointment.

3.10 Carers and Housing
The Scottish Government champions independent living for older and disabled people within their communities. Living in the right home with the right advice and support can be the key to enabling people to live safely and independently at home. If the home of the cared-for person is suited to their needs this can make caring for them easier.

3.10.1 Housing Strategy
Age, Home and Community – The Next Phase[48], is Scotland's refreshed housing strategy for older people. It reflects changing needs and demand, demographics and looks to address issues of isolation older people can face as well as improving access to suitable housing. Carers who care for older people can also face issues of isolation if the intensity of caring is high or they live remotely.

3.10.2 Fairer Scotland for Disabled People Delivery Plan
Our Fairer Scotland for Disabled People Delivery Plan[49] sets out a number of housing related actions. For example we have recently published new practical guidance for local authorities that will support the delivery of more wheelchair accessible housing[50]. For carers, good accessibility of a home can make a huge difference and reduce injuries from inappropriate manual handling.

3.10.3 Adaptations
Adaptations such as a level access shower or stair lift can improve safety, dignity and wellbeing of both the individual and the carer. Integration Authorities are responsible for the planning and commissioning of services to improve outcomes for people who require adaptations, and Health and Social Care Partnerships are responsible for the delivery of those adaptations[51].

3.10.4 Technology enabled care
Technology enabled care (TEC) in the home can help individuals live with greater independence and have a positive impact on the carer. The Technology Enabled Care in Housing Charter[52] has been developed to support and underpin the use of TEC in creating and delivering housing solutions. It has seven pledges including taking account of people's needs and putting them and their carers at the heart of the co-design, testing and review of services, to enable people to live in their homes safely and independently, for as long as possible.

3.11 Carers and policies/strategies focused on particular care groups
As discussed in the introduction, the issues carers face will be strongly linked to their caring situation and significantly the cared-for person's condition. Any successful support for the cared-for person often relies on the carer's expertise and understanding of their condition. An increasing number of our strategies for different situations and conditions therefore include a focus on working with carers.

3.11.1 Supporting Disabled Children, Young People and their Families.
Caring for a child with a disability can be both rewarding and also bring challenges in relation to the social care support as the child ages. The Scottish Government has identified three priority areas to support disabled children, young people and their families. This is to ensure they get the right support, at the right time, and in the right way from birth to adulthood.

We have published an online resource, Supporting disabled children, young people and their families: guidance[53], which concentrates on these priorities. The resource has been developed to ensure that children, young people and their families/carers:

  • are more aware of the support available nationally and locally and understand their rights, what their entitlements are and how to realise them;
  • have improved access to support and services, by providers ensuring their needs are identified quickly and they receive the support that is right for them;
  • receive the right support and services at key points of transition, in particular when transitioning from children to adult services.

A particular challenge that is often raised by family carers is when young people with disabilities make the transition into adult service provision. If this is not managed well, it can have a profound impact on the health and wellbeing of not just the child but also the family carers. The roles of education and social work alongside health are key to ensuring a successful transition from children's services to adult services. Often other agencies play an important role as well including the third sector.

3.11.1.1 Family Fund for families with disabled children
The Scottish Government currently funds Family Fund £2.983 million annually to support low income families raising disabled and seriously ill children and young people. This is to ensure that they have the same opportunities as other children, by supporting their carers with the extra costs this may incur. The fund provides grants for essential items such as kitchen appliances, clothing, bedding, sensory toys, computers and tablets, as well as much-needed family breaks and more.

3.11.1.2 Out of School Care
Out of School Care encompasses breakfast clubs, after school clubs, holiday schemes and childminders. It is mainly aimed at primary school children, although some secondary school children also use these services.

Available evidence[54] on Out of School Care highlights links to child poverty. Access to affordable and accessible childcare for school-age children presents a barrier to parents taking up or retaining good quality employment. We know that parents and carers who have children with a disability or additional support needs can find it more difficult to access appropriate services than other families.

The Children (Scotland) Act 1995[55] places a statutory duty on local authorities to provide daycare for school age children "in need" both before and after school and during holidays[56]. "In need" is defined as 'being in need of care and attention[57]' because, amongst other things, the child may have ill-health or a disability, or because they are affected by a disability of a family member. This legislation may therefore be particularly relevant for carers who care for a child with a disability or for those children who care for a disabled relative.

The Tackling Child Poverty Delivery Plan[58] commits to developing new Out of School Care support to help low income parents reduce childcare costs, work more flexibly and increase their incomes. We are engaging extensively with parents, carers and children to draft a strategic framework for Out of School Care by the end of this Parliamentary term.

3.11.1.3 Out of School Care Fund
We have created a £3 million 2 year fund for delivering community based childcare and activities which will help to reduce the cost of living for low income families by providing subsidised or low cost childcare for school aged children.

Each project should be able to demonstrate direct positive impacts for at least one of the 6 priority groups identified in the Tackling Child Poverty Delivery Plan and also demonstrate positive outcomes for children, including those "in need".

3.11.2 National Dementia Strategy
Scotland's National Dementia Strategy 2017-2020[59] sets out national action to support better services and supports for people with dementia and their carers. Key areas include more and earlier diagnoses, increasing access to support after diagnoses, improving integrated home care and taking a national approach to dementia palliative and end of life care. Like the two predecessor strategies, it has a specific focus on supporting and enabling family carers of people with dementia.

In particular, theStandards of Care for Dementia[60] provide human rights-based standards that people with dementia and their carers can expect across all care settings. There is a specific standard that people with dementia have the right to have carers who are well supported about dementia. Carers are entitled under the standards to be involved in all aspects of care planning (see also section 2.5) to be well informed about dementia and to access appropriate peer support. We fund two national dementia workforce programmes to support local implementation of the dementia standards.

In addition, everyone newly diagnosed with dementia is entitled to at least a year's dedicated post-diagnostic support, coordinated by a named Link Worker. The Link Worker works with the person with dementia and their carer(s) to understand the illness, plan earlier for future care options and build a personalised care plan.

The Scottish Government provides funding support for two national dementia carer groups, which are involved in developing and implementing the strategy – including informing workforce development and services modernisation.

During the course of 2019/20, we will engage widely, including with service users and carers and statutory, third sector and independent sector partners to develop our fourth National Dementia Strategy, building on our internationally recognised action in areas such as rights-based care and post-diagnostic support.

3.11.3 Scottish Strategy for Autism
Scotland's National Autism Strategy Outcomes and priorities for 2018-2021[61] sets out priorities for action to improve outcomes for autistic people and their carers living in Scotland. The outcomes were developed following engagement with autistic people, carers and professionals. The document sets out our priorities to ensure that autistic people can live a healthy life; have choice and control are able to live independently; and be active citizens by participating in all aspects of community and society. For carers it is vital that we create a society that works for autistic people that they care for.

Our autism outcomes and priorities strategy emphasises the joint commitment of national and local Government to autistic people and their carers. The framework sets out a range of priorities which will increase support for people with autism, which in turn helps carers and improve public understanding of the condition. These priorities include improving the diagnosis process and care pathway for autism. We will be working with Scottish Autism to improve the support given to newly diagnosed autistic people and their carers. Carers will be made aware of the blue badge scheme and encouraged to apply for it.

In addition, we will continue work with Education Scotland to refresh the autism resource available to all schools. The framework will also include having a national autism awareness campaign.

3.11.4 The Keys to Life – Learning Disability Strategy
The Scottish Government is committed to improving the lives of people with learning disabilities and supporting their carers. In 2019, we published, with COSLA, a new joint framework to support the delivery of our 'Keys to Life' learning disability strategy[62]. This implementation framework sets out how to meet the strategy's goals for people with learning disabilities in Scotland.

The framework sets out our priorities to ensure that people with learning disabilities can live a healthy life; are treated with dignity and respect; are able to live independently; and participate in all aspects of community and society. Everyone with a learning disability should have the opportunity to shape their own lives and deliver on their potential. For carers, adequate support needs to be available at the right time and right place to allow them to continue their caring role.

The framework is an important step towards this. It is vital that people with a learning disability are listened to and supported to make choices about how they want to live their lives. In taking forward the new framework, we will be working closely with people with learning disabilities as role models, their carers and leaders to raise awareness and challenge perceptions in Scotland. The framework also emphasises the joint commitment of national and local Government to people with a learning disability and their carers.

3.11.5 National Action Plan on Neurological Conditions
It is estimated that there are around one million people in Scotland living with a neurological condition, of whom at least 10% are disabled as a result. This Plan for 2019-2024 sets out a vision for driving improvement in the care, treatment and support available to people living with neurological conditions – and their carers - in Scotland. Its vision is that 'Everyone with a neurological condition will be able to access the care and support they need to live well, on their own terms.' An aim is to ensure people with neurological conditions and their carers are partners in their care and support.

In order to help deliver this, the Plan includes a commitment to work with the NHS, Integration Authorities, neurological and carer organisations to help ensure:

  • Carers of people living with neurological conditions are aware of their rights under the Carers Act; and
  • Local carer information and advice services know how to access the most relevant information and training for carers of people living with neurological conditions.

3.11.6 Families affected by substance misuse

The national strategy, Rights, Respect and Recovery (2018)[63] outlines commitments to support not only treatment options for drug and alcohol use but also support for those living with or affected by this. This strategy sets out a shift towards a whole family and family inclusive practice approach to treatment, with lived and living experience at the heart.

We know it is most often the families who are there 24/7 as the first point of contact, caring for a family member or a friend affected by drug and/or alcohol use, coping with very challenging situations. This includes kinship carers, often grandparents looking after grandchildren as well as dealing with their own adult child's alcohol or drug use.

Our key commitments include ensuring family members, including those who are carers:

  • will have access to support in their own right, and where appropriate included in the cared-for person's treatment and support
  • are involved in the planning, development and delivery of services at local, regional and national level; and
  • will have access to services (both statutory and third sector) provided through a whole family approach in line with GIRFEC values and principles. The whole family approach explores tailored support for all that are affected, including carers of people affected by substance use.

3.11.7 Mental health support
Mental illness is one of the major public health challenges in Scotland. Around one in three people are estimated to be affected by mental illness in any one year. Improving mental health is a priority for the Scottish Government.

We want to make it easier for those caring for people with mental ill health to make informed decisions by improving the information and support available. We will enhance the '111' telephone service which provides urgent health advice out of hours, to better support carers. We will also make online information more easily available.

Sometimes people with mental ill health require additional support to help them make informed decisions using supported decision-making[64]. This can refer to any process in which an individual is provided with the support they need in order for them to be able to make a decision for themselves and or express their will and preferences within the context of substitute decision making e.g. guardianships or compulsory treatment for mental illness or informally, in family relationships for example. The purpose of supported decision-making is to ensure that the individual's will and preferences are central to and fully respected in decisions that concerns them. In supporting a person to make decisions, carers will have to continuously work to do 'the right thing', disregarding their own needs and preferences in favour of those expressed by the decision-maker.

The Scottish Government will improve the way mental health services support carers for example through developing community services[65] for 5 to 24 year olds to provide direct and immediate access to counselling sessions, not only for children and young people, but also their families and carers.[66]

We also fund the Triangle of Care project[67], delivered by Carers Trust Scotland. It provides a framework with resources and training to support mental health professionals to involve carers in the care planning and treatment for the cared-for person in mental health settings. The main Triangle of Care resources are being refreshed and will be ready around November 2019.

The approach of the Triangle of Care is equally relevant and appropriate for Child and adolescent mental health services (CAMHS) and adult mental health services. Therefore Carers Trust Scotland will develop a new resource to supplement the main Triangle of Care resources to help mental health professionals in CAMHS to better identify, understand and support carers. The new resource will also be designed to be useful for carers, families and young people using CAMHS. It is intended that the resource will help carers understand how CAMHS staff should engage with them and value their caring role and the importance of partnership working.

A new CAMHS assessment tool has also been developed, heavily based upon the main Triangle of Care self-assessment tool, enabling CAMHS teams to get a true picture of how they engage with carers and families, supporting them to create action plans to improve.


Contact

Email: joanne.pierce@gov.scot