Executive summary

Executive summary

Population overview

According to the Office for National Statistics (ONS) by 2025, the population of the West Wales region is estimated at 389,719, an increase of 1.34% since the 2017 population assessment was undertaken.

• 48.8% of the population in the region live in Carmarthenshire, 18.7% in Ceredigion and 32.5% live in Pembrokeshire
• 40% of adults in Carmarthenshire; 49% of adults in Ceredigion and 22% of adults in Pembrokeshire speak Welsh
• 2021 estimates from ONS indicate that people over 65 make up 24.1% of the population in Carmarthenshire, 26.2% in Ceredigion and 26.7% in Pembrokeshire and as large parts of West Wales are both rural and coastal, the area attracts high levels of inward migration of people over 65.

By 2043, current Welsh Government population projections predict an increase in the total population of West Wales to 396,000, with a predicted rise in those aged over 65 to 124,587 or 31.5% of the total population.

Overview and key messages

West Wales has a higher proportion of older people than average across Wales, with inward migration a major accelerating factor for the growth of the older population. Pembrokeshire has an older population than Carmarthenshire and Ceredigion, with a projected regional increase in those 85 and over of 28% by 2030, with variation as follows: Carmarthenshire=25%; Ceredigion=26% and Pembrokeshire=33%.

People are living longer with increasingly complex issues, whilst wanting to remain in their own homes as independently as possible for as long as possible. COVID-19 has had a significant impact on the physical and mental wellbeing of older people. This is as a result of long periods of social isolation, lack of access to health and care services as well as the direct impact of contracting COVID-19.

Care and support arrangements should be designed with older people, should be flexible and include a range of community, digital and technology-based solutions.

Gaps and areas for improvement

Include:

• Involving older people and their carers in assessment and care planning, including discharge planning
• Helping people to remain independent in their homes for longer through continuing development of digital and telehealth support particularly for those in very rural areas and where transport is an issue
• Providing additional support for carers managing multiple and complex conditions
• Continuing development of community connectivity, well-being and resilience services that address a range of needs including loneliness and isolation
• Increasing supply of alternative accommodation options such as extra-care schemes
• Ensuring older people and their families can access services through their language of choice and the active offer through the medium of Welsh is available.

The impact of COVID-19:

The COVID-19 has led to widespread social isolation, with lasting implications on mental health of older people. People have delayed seeking help during the pandemic and now are presenting with much more complex health issues.

Due to the reported mortality rates in residential care older people are now far more reluctant to go into residential care creating a greater demand for alternative accommodation.

Overview and key messages

As life expectancy and inward migration of older people impacts on the percentage of older people in the region, the number of People Living with Dementia (PLwD) in West Wales is expected to increase in the coming decades.

The Dementia Action Plan for Wales (DAP) 2018 – 2022 sets out a clear vision for “Wales to be a dementia friendly nation that recognises the rights of people with dementia to feel valued and to live as independently as possible in their communities.”

Our West Wales Regional Dementia Strategy is being produced and will inform the development of person-centred dementia pathways, co-produced with users and carers.

Key messages are as follows:

• The incidence of dementia on the Quality Assurance and Improvement Framework (QAIF) disease register in Hywel Dda in 2019-20 was 0.7%, in line with the Welsh national average of 0.7%
• In 2016-17 dementia diagnosis rates were one of the lowest in Wales at 45.6% indicating that prevalence rates are likely to be closer to 1.4% although, the number of those diagnosed has increased an average of 3% per annum to 2947 in 2020
• Over thirty genetic, medical, lifestyle, cultural and societal factors have been identified, which impact the risk of cognitive decline differently depending on gender. Some of these factors increase risk more dramatically in women than in men.

Gaps and areas for improvement

Include:

• Continuing to improve awareness, identification, and diagnosis of dementia, including onset of dementia in younger people
• to ensure timely diagnosis and access to appropriate care and support
• Improving co-production of services by including PLwD
• Increasing diagnosis rates in non-specialist community settings by:
  • Improving training and awareness of new evidence-based best practice dementia models within primary care, based on the Good Work Framework
  • Supporting GPs, allied health professionals (AHPs) and nurses to make assessments
  • Improving quality of referrals into specialist care for those requiring it
• Developing more consistent rights-based person-centred care and support
• Continuing improvements in community support, training and help for PLwD to discuss their diagnosis, navigate/co-ordinate services, to build resilience and maintain balance across all aspects of their life
• Ensuring equal access to physical health services and treatment for PLwD
• Ensuring advance care planning and end of life care is fully embedded in wider inclusive, person-centred care and wellbeing planning
• Improving research into dementia by involving care homes in the region in current research opportunities
• Continuing the development of a “hub” or single point of contact approach for PLwD to access information and support.

The impact of COVID-19:

COVID-19 has had a disproportionately negative impact on PLwD, with dementia being shown as an age-independent risk factor for severity and death in COVID-19 patients.

Although the exact impact on the diagnosis and incidence rate of dementia is unclear, stakeholders have identified that COVID-19 has impacted timely diagnosis due to late presentations.

Full information on the impact of COVID-19 upon those with dementia and their carers is not yet available. However, there is some concern that it may cause damage to the brain in the longer term.

Overview and key messages

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 recognised also 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.

Gaps and areas for improvement

Highlighted during the engagement session include:

• Continuing improvements in the consistency of approach, information, advice and assistance provided across the region, within a more integrated system
• Reviewing information provided to carers to ensure it is current, relevant, more accessible and easier to find
• Extending use of social media and technology to identify and provide information to carers and maintain regular contact, particularly for young carers
• Developing a single point of contact to help people navigate the system
• Ensuring respite care fits the needs of both the carer and the cared for
• Addressing the challenges of accessing support in rural areas
• Improving the statutory carers assessment process, which can be challenging, often takes too long and may not always consider carers needs appropriately
• Improving delivery of the “active offer” through the medium of Welsh. Carers want to feel comfortable using their preferred language of choice, including languages other than English and Welsh.

Young carers report:

• They struggle to have a break, are not seeing their friends and don’t 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 require extra support for their mental health and wellbeing.

The impact of COVID-19:

Caring is such an important part of life and the role of unpaid Carers has become increasingly prominent. A significant number of unpaid carers have sought support with their caring role and in an on-line survey circulated as part of the process to develop the PA, many carers reported:

• Feeling isolated during the pandemic
• Being cautious of people coming into their homes due to the risk in virus transmission, with many choosing to suspend domiciliary care, putting further strain on their wellbeing and mental health
• Experiencing financial pressure, as they have had to take more time off work to support the person they care for
• Concern over the adverse effect of limited social contact on the well-being of loved ones in hospitals and care homes, due to strict visiting restrictions
• Young carers missed the break from caring and social interaction with peers that schooling (suspended during lockdown) usually provides
• Improved access to support due to the increased availability of on-line services in response to the pandemic.

Overview and key messages

The population of People with a Learning Disability (PwLD) in West Wales is projected to remain relatively stable. However, projections suggest the number of people diagnosed with severe or profound and multiple learning disabilities (PMLD) is expected to grow by 1.8% each year. The number of older people with a learning disability is set to increase.

PwLD often have additional diagnoses and/or co-existing conditions such as: autism; physical disabilities; sensory and communication impairment. They are more likely to experience poorer physical and mental health and multiple morbidities, often linked to poor diet, low levels of physical activity, smoking, alcohol use and difficulties in accessing preventative health services.

Through the Regional Improving Lives Partnership, PwLD have worked together with partners to develop the West Wales Charter – a simple list of things they expect, and need, to live fulfilling lives, which is supported by the Welsh Government; County Councils of Carmarthenshire, Ceredigion and Pembrokeshire, Hywel Dda University Health Board and a range of community and 3rd sector organisations.

Gaps and areas for improvement

Include:

• Improving awareness of the needs of PwLD and through training and education of service providers, healthcare workers, families and carers
• Improving the quality of communication with and information for PwLD (easy read)
• Widening access to supported accommodation in a location of choice
• Strengthening access to education, volunteering and paid work opportunities in local communities
• Improving processes for managing transition between children’s and adult services and specialist health services
• Supporting self-advocacy for PwLD
• Increasing planning and resources for PMLD and their carers.

The impact of COVID-19:

COVID-19 has had a particular effect on mental health, well-being, health and feeling of isolation for PwLD and their care and support network. There has been a significant impact upon services and care available, such as day opportunities and short breaks which has significantly impacted their health and wellbeing.

Many PwLD have been required to shield during the pandemic, limiting their opportunities to contribute to many of the consultations and planning events around services in LD, including the development of the PA.

Overview and key messages

Autism is a term used to describe people with a group of complex neuro developmental symptoms, of variable severity which affects how people communicate and interact with the world. Autism is generally described as a spectrum and can cover a wide range of behaviours and needs. Autism was covered under the Learning Disability chapter in the 2017 PA however, in response to the introduction of the Autism Code of Practice in 2021, a separate Autism chapter is being developed.

The term ‘autistic people’ rather than ‘people with autism’, reflects the language preferences expressed by autistic people. The term ‘people’ refers to children, young people and adults.

Estimates of the prevalence of autism spectrum disorders suggest rates of around 1% in the general population. This would suggest there are about 4,000 autistic people living in West Wales. However, there is much debate and the suggestion that not all individuals are identified (Brugha et al., 2011, 2016; Chiarotti & Venerosi, 2020; Fombonne et al., 2021; Lyall et al., 2017).

New services for adult diagnosis have been set up across Wales at a time of rising awareness of the spectrum of autism experiences; however, until recently no studies have examined adult autism prevalence in Wales.

Increased rates of diagnosis and more prevalence of autism will require more specialist support in the community.

Feedback from engagement meetings across the region identified the following:

Gaps and areas for improvement:

• Improve waiting times for diagnosis and diagnosis rates for both children and adults
• Improve access to information and advice for Autistic people and their families, including the autism strategy and the associated support services available in West Wales
• Improve awareness of Autism and the Autistic Spectrum Conditions across health, social care services, education and all public services
• Greater emphasis on user engagement and coproduction in service development
• Improving the transition for Autistic Young people when they leave school
• Increasing opportunities for volunteering, work experience, employment opportunities and networking for autistic people.

The impact of COVID-19:

The pandemic has impacted on the care and support available for autistic people as many support services were paused. In addition, the uncertainty and frequent changes to routines and rules will, in some cases have had a significant impact upon people’s mental-health and wellbeing. This has placed increased pressure on family members and carers.

For Autistic People the resumption of and reintegration to activities such as education following prolonged periods of lock down has also presented significant challenges.

Overview and key messages

There are over 82,000 children and young people in the region, approximately 22% of the total population. Although the population of children and young people up to the age of 25 will remain relatively stable, the number of children aged 10-15 in the region is expected to decline by 8% by 2031. It is estimated that 6,105 children and young people live with a long-term condition or disability. Children and young people are considered under the following three groups:

• Up to the age of 18
• Up to the age of 21 if they’ve been in care
• Up the age of 25 if they’ve been in care and are still in education.

The region has a lower number of looked After Children (LAC) than the national average. The Capped 9-point score (Year 11 pupils’ best 9 results from qualifications available in Wales) is 361.7, above the Wales average of 353.8. At 14%, the number of young people not in education, employment or training in West Wales is marginally lower than the Welsh average.

Gaps and areas for improvement:

Include:

• Further integration with early years services
• Involvement of children and young people, including care experienced young people and those with complex needs such as disability in the planning of services
• Further development of preventative and early intervention services, building on established programmes such as Family Information Services, Families First and Team Around the Family and trauma informed models of support
• Considering the importance of physical, mental and emotional wellbeing of children and the key role of community services play in achieving this
• Enhancing partnership working to deliver a ‘No Wrong Door’ approach to services so that children and young people receive the support they need regardless of where they enter the system
• Developing resilience and wellbeing in families to enable children and young people to remain within their families and/ or communities so long as it is safe for them to do so
• Continuing development of multi-agency and individualised approach to supporting children with complex needs
• Developing a regional transition process for children and young people into adult services where appropriate.

The impact of COVID-19:

Children and Young People’s Mental Health and Wellbeing has been significantly affected during the pandemic. School closures, quarantine periods, fear of becoming unwell and impact upon older relatives are factors that have contributed to a decline in their Mental Health and Wellbeing.

In addition, Children and Young People from areas of poverty were subject to increased risk of poor Mental Health and Wellbeing. Contributing factors included the increased worry of parent financial insecurity, lack of social support, housing quality and poor nutrition.

Children’s Social Services have maintained face-to-face contact for children identified as at risk throughout the pandemic. However, enforced absences form school and time at home has presented significant challenges in identifying and responding to risk.

The region has experienced a rise Children and Young People seeking support with complex emotional and mental health difficulties, including behaviours that challenge.

Overview and key messages

Our mental health affects how we think, feel and act. A healthy outlook can reduce both the intensity and duration of illnesses, whereas poor mental health can have the opposite effect. It has been shown that depression and its symptoms are major risk factors in the development of coronary heart disease and death after myocardial infarction. Stigma surrounding mental illness is common and can play a role in people potentially hiding issues surrounding their mental health rather than seeking help, which can be mitigated through increasing the information, education and public awareness.

According to the Welsh Government’s Together for Mental Health Strategy:

• 1 in 4 adults experience mental health problems or illness at some point in their lifetime
• 1 in 6 adults are experiencing symptoms at any one time
• 1 in 10 children between the ages of 5 and 16 has a mental health problem, and many more have behavioural issues
• Approximately 50% of people who go on to have serious mental health problems will have symptoms by the time they are 14 and many at a much younger age.

The Hywel Dda Mental Health Quality and Outcomes Framework (QOF) register records approximately 4,100 patients in 2019. Through a range of facilitated engagement sessions we were able to identify:

Gaps and areas for improvement

• Improving integration and communication between services, so that patients with multiple issues have access to the range of support and care needed
• Improving processes for those experiencing crisis, to reduce instances where patients in crisis have difficulty accessing services
• Promoting and supporting self-management by educating people on how to manage their conditions, live more independently and make their own choices
• Shifting the emphasis to community-based services
• Recognising the effect of COVID-19 and the resulting increased demand for mental health services.

The impact of COVID-19:

COVID-19 has led to increased isolation and a disruption of normal life, which could have short term effects on mental health. It is not clear what the long-term effects of COVID on mental health and wellbeing might be however, in the period immediately before the pandemic, it was reported that 11.7% of Welsh people suffered from severe mental health issues, which reportedly climbed to 28.1% in April 2020.

COVID-19 has also had a worse effect on particular on those groups who already experience poor mental health outcomes, including those from black and minority ethnic backgrounds, those with existing physical or learning disabilities and those in areas of high poverty.

Overview and key messages

Most people in the West Wales region between the age 18 to 64 will not access care and support for a specific need or protected characteristic. Instead, they are served by public health information and national and local programmes designed to encourage healthy lifestyles and practices. These programmes are aimed at reducing specific health risk factors such as cardiovascular disease, often achieved by strategies to reduce obesity and smoking and improve diets.

There are a proportion of people who have a range of specific needs because of physical disability or chronic health conditions that may require extra support to enable them to live as independently as possible.

Gaps and areas for improvement

identified through engagement include:

• Involving people with a range of disabilities at the planning and design phase of new developments and accommodation, to ensure they are easy to use and accessible
• Improving early identification, treatment and management of preventable and chronic conditions including diabetes, heart disease and respiratory illness, to improve long term well-being and reduce complications
• Improving appropriate access to a range of information, advice and assistance
• Increasing use of assistive technology, such as telecare to transform domiciliary care and supported living services
• Improving access support for assisted living. Many of the current rules and regulations about supporting and helping people with disabilities are too rigid
• Improving access to and communication of financial support such as personal independence payments, disabled facilities grant, direct payments
• Improving the process for home improvements and modifications
• Increasing the flexibility of step up and down provision to respond to changing needs
• Improving access to transport.

The impact of COVID-19:

COVID-19 has led to widespread social isolation, with lasting impact on physical and mental health for those people having to shield during the pandemic.

People will struggled to access or delay seeking help during and are now presenting later, with much more complex health issues often resulting in worsening comorbidities and prolonged illness.

Overview and key messages

Sensory impairment is inevitable with ageing. As sensory impairment can be a significant life-limiting condition, the challenges associated with the condition are likely to grow over the coming decades.

People with sensory impairment are more likely to feel lonely and isolated. Research by RNID in 2000 found that 66% of deaf and hard of hearing people feel isolated due to their condition excluding them from everyday activities.

Sensory impairment is something that cuts across system wide services; it is important that sensory impairment awareness and services are embedded in the whole system of provision.

The combination of two sensory impairments can mean that a deafblind person will have difficulty, or find it impossible, to utilise and benefit fully from services for deaf people or services for blind people. Meeting the needs of deafblind people therefore needs a different approach.

Apart from the day-to-day difficulties, people with sensory impairment also have poorer health outcomes, higher rates of poverty and lower educational achievements than people free from disability.

• Both visual and hearing impairment are projected to increase in West Wales over the coming years
• Accelerating factors for sight loss include diabetes and obesity
• Sensory impairment is associated with increased risk of falls and fear of falling has a major impact on people’s ability to remain independent.

Gaps and areas for improvement

• Improving awareness and understanding of sensory impairment
• Improving the accessible implementation standard and developing a process to audit implementation
• Improving provision of accessible information e.g., braille letters
• Extending provision of the interpretation service outside 9-5 and increasing availability of interpreters
• Enhancing record systems such as Welsh Patient Administration System (WPAS) to be able to record more than one impairment.

The impact of COVID-19:

The COVID pandemic has contributed to communication difficulties for both hearing and visually impaired people. Access to information has been more difficult to obtain for the visually impaired e.g., reduced access to braille in surgeries. Where services have shifted from face to face to video consultations, they don’t work for sight impaired people, who prefer phone conversations.

The pandemic has also led to challenges for hearing impaired people around communication e.g., face masks make lip reading impossible. People with sensory impairment are more likely to suffer from isolation and loneliness, which has been exacerbated by the COVID pandemic.

Overview and key messages

Welsh Government has recently launched its new Substance Misuse (drug and alcohol) Delivery Plan for 2019 - 2022. The new plan builds on the progress made during the lifetime of the 2008-2018 strategy and is a key reference for the PA.

Gaps and areas for improvement

• Improving prevention and harm reduction
• Reducing smoking prevalence levels
• Supporting individuals to improve health and aid maintain recovery
• Supporting and protecting families
• Tackling availability of substances and protecting individuals and communities
• Developing stronger partnerships, workforce development and service user involvement
• Developing accommodation provision in response to care and support needs.

The impact of COVID-19:

The effect of COVID-19 pandemic may have had a significant impact on substance misuse however, at present data is not available.

Overview and key messages

Violence against Women, Domestic Abuse and Sexual Violence (VAWDASV) is a major public health problem, a criminal justice issue, and a violation of human rights. It causes harm to individuals and families, and its impact can be felt across whole communities, societies, and economies and can impact on victims in many ways. For example, sexual violence can lead to a multitude of health consequences including physical, reproductive, and psychological harm.

The Violence against Women, Domestic Abuse and Sexual Violence (Wales) Act 2015, together with the statutory guidance on commissioning sets the conditions and expectations for service developments in Wales, with progress reported annually.

Gaps and areas for improvement

• Increasing awareness of violence against women, domestic abuse and sexual violence
• Enhancing education about healthy relationships and gender equality
• Ensuring professionals are trained to provide effective, timely and appropriate responses to victims and survivors
• Providing equal access to appropriately resourced high quality, needs led, strength based, gender responsive services
• Improving prevention focussed initiatives e.g. IRIS/Ask Me.

The impact of COVID-19:

Emerging literature suggests that levels of VAWDASV have been impacted by the COVID-19 public health restrictions, including lockdown, shielding and social distancing regulations (Snowdon et al., 2020). Whilst the full picture of how the pandemic has impacted on VAWDASV is still to fully emerge, it appears likely that both the scale and nature of VAWDASV may have worsened, with rising helpline contacts for all forms of VAWDASV and increased reports to emergency services for domestic abuse in some areas (Hohl and Johnson, 2020). Many prevention strategies and programmes have been put on hold or been forced to adapt during the pandemic because of restrictions on movement, face to face interactions and public events. Given the increasing number of reports of VAWDASV during the pandemic, it is more important than ever to promote prevention through the transformation of norms, attitudes and stereotypes that accept and normalise violence.