Unpaid carers

2011 ONS Census data indicates there are more than 47,000 known unpaid carers across West Wales, of which, 3,436 were Young Carers (defined as 5-17 years old), representing 12.5% of residents. It is also recognised that there is a considerable number of ‘hidden’ carers who do not define themselves as such.

Early identification and self-identification of unpaid carers is vital to ensure they access the right help and support at the right time, as well as maintain their own health, well-being and independence.

Support for unpaid carers in West Wales is driven through the West Wales Carers Development Group (WWCDG), a formal sub-group of the West Wales Regional Partnership Board (RPB) and a partnership between Hywel Dda University Health Board, the three Local Authorities of Carmarthenshire, Ceredigion and Pembrokeshire, Third and Voluntary sector organisations and representatives of service users and Carers in West Wales.

The Regional Partnership Board published their Carers Strategy in November 2020: WWCDG West Wales Carers Strategy 2020-2025. The West Wales Carers Development Group (WWCDG) are responsible for ensuring that an annual action plan is in place to respond to the key priority areas.

• Carmarthenshire (7.3%) and Pembrokeshire (7.4%) are above the national average (6.9%) of people providing unpaid care between 1 to 19 hours per week. Ceredigion (6.9%) is below the national average.

• Carmarthenshire (1.9%) is above the national average (1.8%) of people providing unpaid care between 20 to 49 hours per week. Pembrokeshire (1.7%) and Ceredigion (1.5%) are below the national average.

• Carmarthenshire (3.9%) is above the national average (3.4%) of people providing unpaid care of 50 hours or more per week. Pembrokeshire (3.3%) and Ceredigion (2.9%) are below the national average.

The most recent data (2018) shows that there were 59 assessments of need for support for young carers undertaken in Carmarthenshire during financial year ending 2018, 53 of which led to a support plan. There were 13 assessments of need for support for young carers undertaken in Ceredigion, two of which led to a support plan and 11 assessments of need for support for young carers undertaken in Pembrokeshire, six of which led to a support plan.

In January 2020, the WWCDG engaged with unpaid carers, with input from relevant support organisations, to find out ‘what mattered to them’. Engagement was primarily undertaken via a survey, with the aim of the exercise being to improve outcomes for unpaid carers in West Wales. Some of the survey results are listed below:

• Only 38% of respondents to the West Wales Carers’ survey indicated that they recognised their role immediately, or within 6 months of becoming a Carer; 49% agreed that they had missed out on support as a result

• 26% of those who responded to the WWCDG Carers survey indicated that they were in employment, with 91% of these aged 35-64

• Survey respondents in the 35-44 age group felt that being a Carer had impacted negatively on finances, work, physical and mental health, as well as on relationships

• 64% of people commented that caring has had a negative impact on their own physical health and mental wellbeing

• Only one-fifth of respondents to the WWCDG Carers survey indicated that they had spoken to a health, social care or third sector organisation about what to do if the condition of the person they care for deteriorates, or they are no longer willing to provide care

• We identified that some things matter more to younger people - or have a greater impact on them; this means we need to plan action that takes account of the different needs of unpaid carers across the different age groups.

The information that was gathered from the engagement was used to develop a long-term strategy for unpaid carers called "Improving lives for Carers".

1. Current work and important initiatives in the West Wales Region

A full breakdown of the work that is being carried out in West Wales under the guidance of the WWCDG can be found in Annual reports produced by the group. These annual reports provide full detail on all the actions and programmes delivered through the carers programme by WWCDG:

• WWCDG-Annual-Report-2021-21-FINAL.pdf (wwcp.org.uk)
• WWCDG-Carers-Annual-Report-2019-20-FINAL.pdf (wwcp.org.uk)
• WWCDG-Carers-Annual-Report-2018-19-final-version.pdf (wwcp.org.uk)

2. Current support services

A range of care and support services are in place across the region to support carers. Some services are commissioned individually by statutory bodies and others are jointly commissioned on a county or regional basis. The WWCDG provides a key forum for partnership working between the commissioning bodies and ensures collaboration on the development of plans for utilisation of Welsh Government grant funding, e.g. Integrated Care Fund and Carers grants.

The West Wales Carers’ Development Group (WWCDG) has been able to coordinate several important pieces of work, including:

• Providing young carers with access to a comprehensive information service and enabling them to notify supermarkets, pharmacies, teachers and others that they have caring responsibilities.
• Continued roll-out of the Investors in Carers’ Scheme, increasing the awareness of professionals across sectors including primary, community and acute health care, schools, libraries, social care, Job Centre Plus and third sector organisations of the needs of carers. Over 120 settings are currently participating in the scheme and many more are working towards their award. The scheme also enables people to register as a carer with their GP, leading to the offer of a referral to the local Carers’ Information Service which can provide additional information, advice and support
• Deployment of Carers Officers (employed by the third sector) within hospitals to support health professionals to identify unpaid carers, improve their involvement in the discharge process and provide information and support.
• Continued delivery of the Introduction to Looking After Me (I2LAM) programme for carers across West Wales, helping carers learn new skills and take care of their own health while looking after someone else.
• Roll-out of the Carers’ Resilience and Wellbeing Programme, providing carers with a ‘what matters’ conversation and appropriate support including preventative interventions and respite
• Establishment of the regional Carers Support Innovation Fund offering third sector organisations with short-term funding to deliver support for carers. Initiatives supported include physical fitness sessions, sports reminiscence events, online craft and social sessions and targeted support for older carers
• Roll-out of the Employers for Carers (EfC) scheme in West Wales providing access to a range of resources for statutory and third sector partners. This has enabled organisations to review policies and procedures through a carers’ lens and offer practical support to employees with caring responsibilities through the introduction of carers passports and staff networks
• Various digital inclusion initiatives to assist carers during the pandemic, including the Pembrokeshire Digital Connections Partnerships supporting people, including carers, to access digital equipment and technology.

3. Support and Care Services

In addition to the programmes of work carried out under the WWDCG funded Welsh Government grant programmes, there are also several support and care services available to carers which are commissioned by Hywel Dda UHB and Local authorities. These can be broadly broken down into services that support:

• Identification and recognition
• Advice and information
• Assessment of carers needs
• Practical support (for example replacement care, help around the home, shopping)
• Advocacy
• Condition specific support for the carer and the person they care for.

4. Local Authority and Community

In addition to the specialised health support and services provided by Hywel Dda UHB, there are several other support mechanisms provided by local authorities:

• Universal services - For example leisure centres, community centres, libraries, adult education opportunities although it is recognised that these services do not yet provide consistent equal access to people with LD
• Preventative services - Council grant funding supports the growth of alternative community services that are co-produced with members of communities enabling people to build upon their own individual strengths and resources. These include good neighbour schemes, luncheon clubs, community enterprises, community/ voluntary services
• Day Opportunities - Providing social contact and stimulation, reducing isolation and loneliness, maintaining and / or restoring independence, offering activities which provide mental and physical stimulation, providing care services, offering low-level support for people at risk
• Respite provision - Short breaks/respites is a key commitment in recognition that planned breaks are an essential part of supporting families
• Commissioned Services - Individually commissioned supported living arrangements which enable people with learning disabilities to live in their own tenancies with support at varying levels, and residential services which include both the provision of accommodation and care on site, with care being available 24 hours per day. Advocacy services are commissioned across the region; and
• Direct Payments -These provide another way for individuals to access a range of opportunities by being able to choose who provides the services they need.

5. Response to the COVID-19 Pandemic

In West Wales, the local authorities and third sector organisations have responded very well to the Covid-19 pandemic, quickly adapting their services and in some cases moving activities online.

For example, the Newport Carers group in Pembrokeshire went from meeting face-to-face to meeting on Zoom, supported by a Community Connector. As a result, the Carers group became more accessible to Carers across the County, attracting new Carers looking for online peer support.

Another example is Ceredigion Carers Unit who provided a full programme of workshops, training and discussions around Carers rights over the last six months of 2020-21.

All young Carers services have continued to operate and adapted ways of working, utilising Zoom, WhatsApp and Microsoft Teams.

Regular contact has been maintained with young Carers and their families to address issues.

All services have observed a decline in both young people’s and parents’ mental health over the year and services have responded by offering appropriate support.

The Gaps and Areas for improvement are comprehensive and reflect the engagement work undertaken to develop the West Wales Improving Lives for Carers Strategy published in 2021.

Impact of being a carer on well-being and mental health

Being an unpaid carer, whilst being inspiring and rewarding, can leave them feeling:

• Exhausted, isolated and in need of emotional support and counselling
• Concerned over the financial burden of being an unpaid carer and its effect on their employment
• They have lost the ability to maintain a balance between the caring role and work-life balance
• They have lost their identity beyond that of being a carer
• Their ‘voice’ is not well enough recognised
• The WWCDG Carers survey revealed that 75% of former unpaid carers who took part in the survey felt that they had experienced a negative impact on their physical health and mental well-being due to their caring role.

Supporting the needs of carers

Self-identification of unpaid carers and identification and recognition of their role by health and social care professionals is vital to ensure that they access the right help and support at the right time, as well as maintain their own health, well-being and independence. Unpaid carers report:

• There should be an improvement in the consistency of approach, information, advice and assistance provided across the region, within a more integrated system
• Information provided to carers needs to be reviewed to ensure it is current and relevant, more accessible and easier to find. Having a single point of contact to navigate the system would help people to identify relevant information and access the support to which they are entitled
• Access to appropriate respite should ensure that it fits the needs of both the carer and the looked after person
• Support is particularly difficult to source in rural areas
• The statutory carers assessment process can be challenging, often takes too long and carers needs are not always properly considered. Whilst it is recognised that not all unpaid carers need or want a statutory carers assessment, it is important that those that do, know how to apply and outcomes are reviewed to reflect changing needs or circumstances
• Response to the WWCDG Carers survey indicates that 81% of people had not had a Carer’s assessment or review of their assessment within the last 12-months
• 62% of those surveyed who had an assessment or review during the transition from children to adult services, felt that the assessment process and subsequent consideration of the care and support needs did not consider their needs properly.

Digital Inclusion and Technology

Digital connectivity has become even more important since the Covid-19 pandemic. Engagement events identified:

• Most people are using technology but not all. Efforts must be made to ensure technology is available to all and that digital inclusion (and training) as well as non-digital alternatives are offered
• Better use could be made of social media channels to identify and provide information to carers, particularly for young carers
• Technology could be used to make it easier for support staff to keep in regular contact with the carer to make sure they do not burn out.

Young People

Many young carers and young adult carers fed back that their caring responsibilities mean:

• They struggle to have a break, are not seeing their friends and do not have their own space
• They find it difficult to balance schoolwork, homework and their caring role and can feel stressed, worried and anxious at school, as they are away from the person that relies on them for care
• They may need extra support especially for their mental health and wellbeing.

During the COVID-19 pandemic the role of unpaid carers has become more prominent. The experience of lockdown during the COVID-19 pandemic, and the need to safeguard people who are more at risk of the disease, has further highlighted the important role that unpaid carers play within our communities [6].

Hywel Dda University Health Board (HDdUHB) has been proactive in supporting unpaid carers to access COVID Testing and, more recently, identifying unpaid carers through eligibility checks for COVID-19 vaccinations. This resulted in over 3,000 unpaid carers self-identifying between April - May 2021, who had not registered previously as an unpaid carer with their GP practice [9].

As part of HDdUHB action to make every contact count, the Health Board Carers Team provided follow up information to each newly identified carer including information about third sector support services and the Introduction to Looking After Me courses delivered by the Education Programme for Patients.

Many unpaid carers have felt increasingly isolated due to the COVID-19 pandemic. Some of the concerns expressed in engagement events and feedback from an on-line survey circulated as part of the process to develop the PNA highlighted the following:

• Many were very cautious of people coming into their homes due to the risk in virus transmission, with many choosing to suspend domiciliary care. This increased their isolation and put further strain on their wellbeing and mental health
• Many experienced financial pressure, as they had to take more time off work to support their cared for person
• A reduction in access to respite care as care homes closed their doors to new clients increased their isolation and put further strain on their wellbeing and mental health
• Many were concerned about the adverse effect on the well-being of loved ones, due to the strict visiting restrictions in hospitals and care homes
• Young carers missed the break from caring and social interaction with peers that schooling (suspended during lockdown) usually provides
• In some instances, unpaid carers reported they were able to access more support due to the increased availability of services on-line because of the pandemic.

References:

1. [6] https://phw.nhs.wales/publications/publications1/voices-of-carers-during-the-covid-19-pandemic-messages-for-the-future-of-unpaid-caring-in-wales/
2. [9] WWCDG-Annual-Report-2021-21-FINAL.pdf (wwcp.org.uk)