Caring Together and Getting it Right for Young Carers Progress

This report summarises the action to support carers and young carers. It also addressess the issues raised by carers and young carers at the first Carers Parliament.

Part 1: Supporting Adult Carers (with reference to young carers where appropriate)

Income maximisation to help deal with reform of the welfare system.

Support to organisations and to individuals

The Scottish Government is working with a range of organisations to help it better understand the impact of the UK Government's reforms of the welfare system on different groups in Scotland. Carers Scotland is represented on its Welfare Reform Scrutiny Group.

The Scottish Government is doing all that it can to mitigate the worst impacts of these reforms on people and organisations across Scotland. This includes: providing an additional £7.9 million for organisations to give advice and support to those affected; an additional £9.2 million for the new Scottish Welfare Fund, giving a total Fund of £33 million; and providing, with COSLA, a total of £40 million to protect people in Scotland from the UK Government's 10% cut in Council Tax Benefit.

The Scottish Government's guidance to NHS Boards on Carers Information Strategy (CIS) funding includes, as one of the priorities, income maximisation and financial inclusion for carers and young carers.

NHS Board CIS funding has been allocated locally for initiatives such as Money Matters surgeries and specialists in financial advice (eg VOCAL, Edinburgh). Some Change Fund Partnerships (eg South Lanarkshire) are also employing Welfare Rights Officers who have a focus on financial inclusion for carers.

Using CIS monies, NHS Fife supports Kindred in Fife which promotes resilience amongst parent-carers. Over the last year Kindred has supported 179 families in Fife. Some key achievements of the project to date are:

  • 115 families were assisted with financial matters including benefits and trust fund applications;
  • 113 families were assisted with educational matters;
  • 21 families were assisted with housing issues (housing benefit, adaptations and rehousing);
  • 39 families were provided with advocacy for health related issues;
  • 29 families were provided with advocacy with social work; and
  • 37 families were referred to specialist voluntary organisations.

In Highland, as part of the work of the Carers Centres and as an integral part of the Carer's Assessment and Support Planning process, carers are referred to a local Citizens Advice Bureau, Highland Council's Income Maximisation Scheme and Energy Assistance Scotland to ensure that they are receiving the correct amount of benefit and are able to maximise their income.

The integration of health and social care will be important for carers.

Legislation for integration

The Bill which will establish the arrangements for the integration of health and social care will shortly be introduced into Parliament. The integration of health and social care represents the radical reform required to improve care, particularly for adults with multiple complex needs, many of whom are frail older people, and to make better use of the substantial resources that are committed to adult health and social care.

The proposals of the Bill are based on four key principles:

  • nationally agreed outcomes which will apply across adult health and social care. One of these outcomes relates to carers;
  • statutory partners to be jointly and equally accountable for the delivery of those outcomes;
  • integrated budgets to apply across health and social care; and
  • the role of clinicians and care professionals to be strengthened, along with engagement of the third and independent sectors, in the commissioning and planning of services.

From the perspective of people who use health and social care services (patients, service users, carers and families) there are a number of issues that the legislation aims to address including:

  • the inconsistency in the quality of care for people, and the support provided by carers, across Scotland, particularly in terms of services for older people and adults who access a range of support services across health and social care;
  • the unnecessary delay in hospital when people are clinically ready for discharge;
  • the services required to enable people to stay safely at home which are not always available quickly enough. This can lead to avoidable and unnecessary admissions to hospital; and
  • carers to be supported to continue to care and to have a life outside of caring.

Locality planning offers a particularly significant and important opportunity for the effective involvement and leadership of non-statutory partners in the delivery of services in the third and independent sectors, and for representatives of patients, people who use services, and carers. Carers will be fully involved in decisions about how best to put in place local arrangements for planning service provision.

Self-directed support is important both for cared-for persons and carers.

Statutory guidance on the carer's assessment and preventative support

In January 2013 the Social Care (Self-directed Support) (Scotland) Act ("the 2013 Act") received Royal Assent. The 2013 Act will commence in April 2014. The Act makes provision about the way in which certain social care services are provided. In particular, it provides a variety of choices as to how a person wishes to arrange their care and support. The Scottish Government is presently consulting on draft Regulations and statutory guidance to accompany the 2013 Act. The consultation period ends on 10 July.

Part of the guidance covers carer's assessments and the benefits of preventative support. The link to this consultation is below:

Directions about the carer's assessment

The Scottish Government is consulting on Directions to local authorities about the way that they should approach "the substantial and regular test" on access to the carer's assessment. The aim of the Directions is to reinforce existing guidance about the interpretation of providing a substantial amount of care on a regular basis and to encourage local authorities to adopt a broadly consistent approach to the carrying out of the carer's assessment. The guidance allows for a broad interpretation of "the substantial and regular test" related to the impact of caring and also builds in significant safeguards about the interpretation in relation to young carers. The link to the consultation is below:

Carers and young carers will not be charged for support

The 2013 Act provides for the first time a power in social care legislation to support carers and young carers in their own right. The Minister for Public Health, Michael Matheson MSP said during the Bill's Parliamentary passage that carers should not be charged for the support that they receive as carers. The Scottish Government is consulting on the Regulations and statutory guidance that give effect to this commitment. The link to this consultation is below:

Employment of close relatives

The Scottish Government proposes to change the present situation where service users can only employ family members under self-directed support in exceptional circumstances. The Scottish Government is consulting on draft Regulations which, amongst other things, set out appropriate (and inappropriate) circumstances where the supported person, carer and professional are considering the option of employing a close relative as a personal assistant. The range of appropriate circumstances include those where the person requires palliative care, where there is a limited choice of service providers and where there are religious or cultural beliefs which make the provision of support by a family member preferable. The link to the consultation is below:

It is important to identify carers early in their caring.

Early identification

Early identification of carers and young carers is the key to providing a carer's assessment and support. The following example shows what is being done to identify carers and young carers at an early stage and to support them:

In NHS Lanarkshire the Carer Support Team has developed a staff "Carer Champion" Training Programme in partnership with the Princess Royal Trust Lanarkshire Carers Centre, North Lanarkshire Carers Together, South Lanarkshire Carers Network and Action for Children North Lanarkshire Project. This training session has been delivered to targeted staff within acute and community settings and aims to enhance the ability of staff to identify and support carers and young carers. The training programme aims to build capacity within NHS Lanarkshire to support carers by ensuring that each ward/community location has a "Carer Champion" working in partnership with the Carer Support Team. Delegates attending the "Carer Champion" Training Programme also agree to ensure that the knowledge gained at the training is cascaded to their colleagues. The intended outcome for carers is that they will have improved access to appropriate information and support from staff. Initial evaluations, immediately after the training and after an 8 week implementation period, indicate that staff feel more equipped to identify and support carers and recognise that this is integral to their role.

With partners, the Scottish Government is taking forward a range of initiatives to help identify and further support carers and young carers. These include:

Health and social care workforce

  • funding of NHS Education for Scotland (NES) who are, with the Scottish Social Services Council (SSSC), taking forward workforce development in relation to the health and social care workforce. Following engagement with a range of stakeholders, including carers, NES identified the need to outline core values, knowledge and skills which will help staff to work with carers as equal partners and achieve better outcomes for carers and young carers. In response NES, with partners, developed "Core Principles for working with carers and young carers". Central to the implementation phase will be the development of a network of Equal Partners in Care or EPIC ambassadors across Scotland. The role of EPIC ambassadors or facilitators will include disseminating information and knowledge in relation to working with and supporting carers and young carers and sharing practice, issues and challenges across the health and social care workforce in Scotland;

Further and Higher Education

  • funding of the College Development Network (formerly Scotland's Colleges) for a workforce development initiative so that staff in the Further Education sector can identify and support learners who are young carers and carers. The second phase of the project has now commenced. The emphasis is on the further development of resources and support materials, identifying the support needs of learners with caring responsibilities, encouraging learners with caring responsibilities to recognise their existing skills and future aspirations and adapting college support structures to respond to young and adult carers. Some Higher Education Institutions such as Glasgow University are taking forward their own initiatives to help identify and support carers and young carers. The Scottish Government is exploring further options for universities;

General Practitioners

  • a number of changes and improvements to patient care through the General Medical Services Contract Agreement in Scotland for 2013-14. It also transfers a number of current indicators from the Quality and Outcomes Framework into the core part of the GP Contract. The current indicator about carers is transferred into the core part of the GP contract. This means that all GP practices in Scotland are expected to identify carers and young carersand have a mechanism in place for the referral of carers, including young carers, for assessment.

At the Carers Parliament carers said that they wanted more support from their GPs. The above initiative on the GP contract will help. It builds on the Royal College of General Practitioners Scotland electronic guidance specifically designed for GPs and practice staff to help identify, signpost and support carers. This Guidance can be accessed at:

The following example shows the outcomes that can be achieved when a GP identifies a carer and makes a referral.

Claire (name anonymised) is a 49 year old mother with a dual caring role. She supports her 23 year old daughter with complex learning and physical difficulties and her 84 year old aunt who is frail elderly with a mild learning disability. Claire's aunt recently moved in with Claire. Claire made initial contact with VOCAL via a referral from her GP. At this stage she was interested in a short break and had been told that VOCAL could help her access some breaks. VOCAL supported Claire in this. Claire also attended a seminar about telecare and assistive technology. Following this, she reported big improvements in her knowledge, her confidence in the caring role and in her ability to shape services. Claire said, "I feel less anxious and stressed." Claire then registered for the Caring For an Older Person training course. Following this five-week course, Claire reported a big improvement in her knowledge. Claire also pursued other courses and support, commenting, "Everything feels more manageable now."

The following example demonstrates action to enhance GP awareness of carers:

In NHS Tayside through the GP worker input, effective partnerships are being built with GP surgeries, pharmacies and other health professionals to ensure early identification of and support to carers, young carers and their families. This provides person-centred 1:1 support for carers and is key in signposting carers on to specific services such as counselling, welfare rights advice, group support and training.

There is a need to improve the uptake and quality of the carer's assessment (carer support plan).

The Carer's Assessment

A good quality carer's assessment carried out in an empathetic and supportive way is the building block for support. A meaningful assessment process assists carers to discuss and record the care they provide and any support they may require to sustain them in their caring role.

  • With partners the Scottish Government is producing Practice Guidance on the carer's assessment with the aim of improving outcomes for carers. This will be published later this year.

There are developments locally on the carer's assessment. Some councils, Health Boards and Change Fund Partnerships are rolling out the carer's assessment. For example:

A number of local authorities including Edinburgh and Glasgow are offering carer self-assessment. Then, on the basis of the self-assessment, if the carer is assessed as providing a substantial amount of care on a regular basis, a full assessment will be carried out.

In Angus, all carers identified by social work are offered a carer's assessment and a record is held of whether the assessment has been accepted or declined. Assessments are carried out by social work and carer centre staff. A Carer Self-Assessment (CSA) is also in use. The self-assessment was refreshed in consultation with carers.

In Midlothian, the focus is on having meaningful and outcome-focused conversations with carers and then recording and acting on these conversations.

Carers have rights. Professionals and carers must know about them.

  • The Scottish Government has commissioned Carers Scotland and the Minority Ethnic Carers of Older People Project (MECOPP) to produce a Carers Rights Charter. Carers Scotland and MECOPP are working with the Scottish Consortium for Learning Disability and the University of Glasgow on this important work. They are now consulting carers and professionals. The Charter, which will be widely circulated, will be published later this year.

There is work at local level to ensure that carers and professionals are aware of carers' rights. For example:

Inverclyde Carers Council is revising its local Carers Charter. The Charter aims to inform carers about their rights to access services and support and the ways in which Inverclyde Council and the CHP can assist them.

Information for carers needs to be available early and in one place.

  • On a Scotland-wide basis, the Scottish Government is working with NHS Inform to provide a new service through Care Information Scotland. The existing helpline and website service currently provides a wide range of information on community care services for older people. The new revamped service will include a service for carers and young carers. Development work is underway.

There are local initiatives to provide comprehensive information to carers in a more accessible way.

In Renfrewshire, the Carers Centre now provides comprehensive information and advice to carers using various formats - a web-site, information leaflets and a quarterly newsletter.

In Forth Valley, the Carer Hospital Support Worker is working with staff at the hospitals to identify carers and provide them with information and support whilst the person they care for is in hospital (or the carer is in hospital) and during discharge planning.

NHS Fife opened a Carer Information Centre in Phase 3 of the Victoria Hospital site.

New technology (telecare and telehealth) should be available across Scotland. There should be effective broadband and the necessary back up in remote and rural areas.

Scotland's Digital Future: Infrastructure Action Plan sets out the steps the Scottish Government will take to deliver a step change in broadband speeds, paving the way for delivery of world-class, future-proofed infrastructure across all of Scotland by 2020.

The Scottish Government has allocated more than £240 million of public sector funding to deliver the Infrastructure Action Plan. Fourteen local authorities have signalled their intent to commit up to £50.65 million for investment in their own areas.

The plan addresses the current digital divide and puts in place infrastructure that will have the capacity to deliver next generation broadband to between 85% to 90% premises and a significant uplift in speed for the remaining 10% to 15% that have no service. The Scottish Government has launched Community Broadband Scotland (CBS) to assist rural communities.

National Delivery Plan for Telehealth and Telecare

The Scottish Government's National Delivery Plan for Telehealth and Telecare will identify solutions for the delivery of telehealth and telecare services to people who live in areas with limited or no mobile or broadband connectivity. This can include, for example, the use of satellite broadband.

In Ardnamurchan, the use of satellite broadband allows emergency responders to video conference through a dedicated bridge (link) to the Emergency Care Centre in Aberdeen Royal Infirmary where a senior clinician can talk them through appropriate actions.

Carers need support to protect their own health and wellbeing. The support should include regular planned personalised short breaks and emotional support. The support should take account of the needs of carers from BME communities and the needs of other carers too.

  • Short breaks
  • Emotional support
  • Advocacy
  • Training
  • Mulit-component support
  • Cultural awareness and responsiveness

Short Breaks

Scottish Government Funding to support the delivery of short breaks is available through the Change Fund for older people, NHS Board Carer Information Strategies, and the voluntary sector Short Breaks Fund run by Shared Care Scotland and the Family Fund. Funding was also included in local authorities' budgets to maintain the extra 10,000 respite weeks. Local authorities can supplement this funding themselves. Some of this funding supports young carers.

One example of provision funded through the Short Breaks Fund is as follows:

Crossroads in Orkney managed a local Time to Live fund that distributed micro-grants of up to £100 to carers so that they could take advantage of preferential ferry fares to get off the island for one or two nights and have a break from caring. Because many of the carers look after older people with complex needs, Crossroads provided replacement care to make the break possible. 25 carers benefited from a break. An older carer on one of the remote outer islands cares for her friend who is 103. Crossroads provided a grant of £100 to allow her to attend the wedding of a relative on the mainland. Crossroads looked after her dependent while she was away, and without this help she wouldn't have had a break as there is no residential respite on the island.

More areas are setting up Short Breaks Bureaux to manage and coordinate short breaks provision and are working more strategically. For example, Scottish Borders Council, in partnership with NHS Borders, carers and the Third Sector has developed a Short Breaks Strategy and work plan.

There are also many good local examples of short breaks provision across Scotland supporting both carers and the people they care for. These include playschemes and activity holidays for disabled children, befriending schemes for both cared-for persons and carers and many other types of provision.

The Take A Break short break scheme for disabled children and young people up to the age of 20 is funded by the Scottish Government and run by the Family Fund.

Through Take A Break, over 1,200 families, with a disabled child or young person have been able to take a much needed short break in 2012.

The Scottish Government has provided a total of £1.3 million funding to the Family Fund for the Take a Break Programme since 2011.

The Take a Break Programme enables families with disabled children, up to the age of 20, to access a grant directly to purchase a holiday, play scheme place, or such items as computers or camping equipment.

The Scottish Government also provided £2.7 million to the Better Breaks Programme, which provides grants to third sector organisations working in Scotland to develop additional creative short break opportunities for disabled children and their families.

There is more to be done in order to ensure better provision of short breaks through well-developed local strategies with clear improvement targets. The Scottish Government is working with partners to take this forward.

It is also important to reflect on, and to learn from, different experiences and to establish the impact that initiatives have had and the outcomes achieved. With Scottish Government funding for a Short Breaks Learning Exchange, Shared Care Scotland has produced an Evaluation Toolkit. The aim of the toolkit is to help short break providers and others to evaluate the outcomes of short breaks in any setting. The toolkit will be available later in May.

Emotional Support

Different types of support to carers including the provision of information and advice, the work of the mental health development co-ordinator based within the PRTC Scotland, short breaks and training enhances carers' wellbeing. Equally, some carers do want, and benefit from, counselling services. NHS Boards with partners offer counselling and other low-intensity treatments to the general population, including carers. There are however local examples of counselling services for carers.

In West Lothian three counselling sessions continue to be fully booked. The Carer Information Strategy monies pays for the counsellor to provide two sessions and the counsellor then provides the third session on a voluntary basis.

There are also local examples of emotional support to carers through support projects.

In Midlothian the Café Support Group for people with dementia and their carers provides invaluable support to the carers. The café numbers continue to grow and the carer support group time has needed to be increased to meet demand. The group continues to be an open forum that allows carers to share problems and solutions and to talk freely with others in the same situation. Many carers who attend have stated that the café group is a vital support to their role as carer and appreciate the reliability the group offers. The carers also find it very useful to have somewhere sociable to go to together with their husband/wife/family member which accommodates both their needs in a supportive and friendly environment.

Multi-component support

Dementia Advisory Clinics for service users and carers are in operation in East Dunbartonshire. They provide better screening and identification, whilst providing support at diagnosis, post-diagnostic support and support to carers. Intensive, multi-component interventions to support carers can delay nursing home admission for people with dementia. By enhancing the coordination of existing activities the dementia clinics provide:

  • multiple points of entry for information;
  • signposting;
  • anticipatory planning for people with dementia;
  • carer support;
  • implementation of dementia care standards;
  • hospital, GP and care home in-reach; and
  • a dementia training hub on dementia.

Carers Link is one of the partners who deliver the clinic service. There is specialist service provision for carers from Black and Minority Ethnic (BME) communities through the BME Dementia Advisory Clinic. There are also developments expected later this year to support young carers of people with dementia.

Advocacy for carers

The Scottish Government is convening a group involving the voluntary sector, including VOCAL, the Scottish Independent Advocacy Alliance, Health Boards, local authorities and others to produce guidance on advocacy for carers. Local advocacy services for carers have grown over the past few years. There are a number of advocacy services provided by carers centres and by other organisations, for example, in Fife, Grampian, Perth, Edinburgh and Dumfries and Galloway.

One example of successful carer advocacy in South West Glasgow is as follows:

Amanda (name anonymised) cares for about 70 hours a week for her mum who is immobile following a stroke. Amanda also has a brother who has Huntington's disease. He was admitted to a mental health hospital after his symptoms worsened. The hospital was three bus journeys away from home. When Amanda visited her brother he was alone in the ward with nothing to do and no one to interact with. Also, the outside lights did not work which meant that Amanda and her friend were walking in the pitch dark when they walked to the bus stop after visiting time. Amanda called the carers advocate to help her get her brother transferred to a hospital that was both closer to home and more suited to his needs. Amanda said that things seemed to get moving after a call from the advocate.

Training for carers

One of the priorities of the Carer Information Strategy funding is training for carers and young carers across a whole range of different areas. The Scottish Government has also funded the National Carer Organisations for a carer training programme.

There are a large number of local examples of training including:

In Glasgow, training pathways are being developed by the Carers Planning and Implementation group to support carers. Some of these are generic and available to all carers, for example, personal effectiveness and others are condition specific, for example, dementia awareness and moving and handling. NHS Greater Glasgow and Clyde CIS funding has been instrumental in supporting the development and delivery of the training pathways allowing greater strategic spend of this fund.

Carers have said about training courses provided by VOCAL, Edinburgh:

"I attended a course for carers of people with dementia. It made a huge difference to me, equipping me for dealing with potential future problems (many of which have since occurred!)."

"The moving and handling course I attended helped me to avoid injury as my relative's condition deteriorated."

Equalities: Cultural awareness and responsiveness

All Scottish Government Carers Branch Strategic documents reinforce the importance of the equalities dimension in identifying and supporting carers. However, concerns were raised at the Carers Parliament that BME carers are not adequately supported nor their needs fully recognised.

  • The Scottish Government will continue to give a strategic lead and have, for example, funded an audit tool produced by MECOPP and a Gypsy Traveller project.

Some local examples are provided below:

In Dundee CIS funding is used to employ two development workers for South Asian and Chinese communities to provide a range of services including advocacy, support groups and welfare rights capacity.

In Glasgow, there are dedicated multi-lingual staff located with the voluntary sector supporting carers from Asian communities. The diversity of Glasgow has changed dramatically over recent years as a result of the city's support to refugees and asylum seekers and all carer services make use of the Interpreting Services to support a range of carers whose first language is not English. Links are also being built with organisations including Deaf Blind Scotland and MS Revise to identify disabled carers.

In Lanarkshire the BME development worker post is hosted within the carers centre. This post enables BME carers to receive individual support and encourages growing numbers to utilise the carer services available. This post supports the continued development of the International Women's Group which helps provide mutual support, relevant information and relief from isolation for BME carers.

Alcohol and Drugs Partnerships (ADPs) should support carers of people with substance misuse problems.

ADPs are working locally to identify and support carers and young carers of people with substance misuse problems.

In Angus there is a dedicated carer development worker based within Angus Carers Centre which is funded by Angus ADP to work with adult carers and family members affected by substance misuse.

In East Renfrewshire, current work specifically relating to addictions includes the following:

  • A clear referral pathway between Social Work and Health and the Young carers services
  • Close links and referral pathway between Young carers service and Youth Addictions Project
  • Young carers staff routinely attend social work case meetings
  • Young carers Voices Peer Education Project delivers sessions in local secondary schools and to health and social work teams

Falkirk ADP is mindful of the role played by carers in relation to recovery from alcohol and drug problems. The ADP supports Grangemouth Family Substance Abuse Support Group (GFSASG) which provides services to family and friends (adults) of substance users within or outwith the treatment setting and where a young person is identified as the carer they would be referred to the most appropriate services.

Carers need support from employers to help them stay in paid employment.

Employers Kitemark

The Scottish Government is fully committed to ensuring that carers and older young carers too can access employment and remain in work. It can be frustrating for carers if they feel that they have to give up work or reduce their working hours when they don't want to but feel they have no option. Employment provides not only an income but a life outside of caring. There are some good employers across the country who support carers well but more needs to be done. That is why there is a Manifesto commitment to produce and implement a Caring for Carers Employers Kitemark which will recognise those employers which support carers.

The Scottish Government knows that industry bodies, trade unions, employers and others are committed to this initiative. Carers Scotland, who is working in partnership with the Scottish Government to deliver this commitment, appointed a Kitemark worker in April to drive forward the necessary work. The Scottish Government has also funded MECOPP to look at the experiences of Black and Minority Ethnic carers in employment and the Princess Royal Trust for Carers in Scotland (Carers Trust) for work through carers centres.

Carers should be equal partners.

Carers as equal partners

Carers are rightly concerned to be treated by all professionals at all levels in organisations as equal partners. Therefore, carers need to be fully involved in decision-making about services for the people they care for and support for themselves. Carers need to be equal partners in decisions about planning, shaping and delivery of services and support.

Much has been achieved and there are many good local examples. Equally, there are concerns that this is not fully understood or implemented. The Carers Rights Charter will provide an additional impetus.

  • The Scottish Government also funded the Coalition of Carers in Scotland (COCIS) to produce Best Practice Standards for Carer Engagement. The Standards are to be finalised and disseminated.
  • The Scottish Government has worked with a number of Change Fund Partnerships on carers as equal partners.

The Carers Parliament said that health and social care services need to listen to all carers, including those carers who care for people with mental ill health. The Scottish Government is taking this forward:

Commitment 2 of the Mental Health Strategy for Scotland 2012-2015 states that the Scottish Government will increase the involvement of families and carers in policy development and service delivery. We will discuss how best to do that with VOX (Voices of Experience) and other organisations that involve and represent service users, families and carers.

As a first step, we have asked VOX to run a series of events with service users to understand how families and carers can be more involved in people's care and treatment. This approach with service users first of all recognises that service users may sometimes have reservations or objections to involving family members in their care or sharing information. We will build on the work with carers.


Email: Dawn Sungu

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