Learning disability

A learning disability affects the way a person learns new things throughout their life. It is different for everyone who is diagnosed, lots of people with a learning disability can gain qualifications, work, have relationships and live alone. Other people might need more support throughout their life. 

To read more on what a learning disability is, click this link here: Learning disabilities - NHS

• The number of people with a learning disability in West Wales is expected to stay about the same.
• The number of people with severe or complex learning disabilities is expected to grow by about 1.8% each year.
• The number of older people with a learning disability is set to increase.
• People with a Learning Disability often have other conditions, such as:
  • Autism
  • Physical disabilities
  • Sensory or communication difficulties
• They are more likely to have poor physical and mental health and multiple health problems.

These issues are often linked to:

• • Poor diet
  • Low physical activity
  • Smoking and alcohol use
  • Difficulty accessing preventative health services
• People with a learning disability worked with partners through the Regional Improving Lives Partnership to create the West Wales Learning Disability Charter.

The charter is a simple list of what those living with a learning disability need to live fulfilling lives.

It is supported by:

• • Welsh Government
  • Carmarthenshire, Ceredigion, and Pembrokeshire County Councils
  • Hywel Dda University Health Board
  • Community and third-sector organisations

To read more about the Charter, click the link here: https://www.ldcharter.com/my-life-my-rights/

The figures below display the 2022 count of individuals diagnosed with a learning disability living in local authority-funded accommodation such as care homes, independent living and those living in housing association properties[NU1] across the West Wales regions. These numbers provide a baseline for understanding the scale of the population group in each area:

• Carmarthenshire: 329
• Pembrokeshire: 450
• Ceredigion: 382
• For a further breakdown of information, click the link here: Persons with learning disabilities by local authority, service and age range.

Annual Health Checks

An annual health check is a free NHS appointment for people with a learning disability. It gives them a full review of their physical and mental health, including checks like weight, blood pressure, and medication. These checks are important because people with learning disabilities often have more health problems and can find it harder to access regular care. The aim is to spot issues early and improve overall wellbeing.

What we know about annual health checks in Wales:

• Before the pandemic, between 30% and 60% of people with a learning disability had an annual health check.
• During the pandemic, between September 2020 and March 2021 just 40% of respondents had a health check. (read more on the importance of Annual Health Checks (AHC) for people with a learning disability here: The importance of Annual Health Checks (AHC) for people with a learning disability. - Improvement Cymru)
• In Wales there are people who are Health Check Champions, they help more people with learning disabilities (aged 14+) get their annual health checks. They work with GP practices to make adjustments like easy-read materials and longer appointments, raise awareness among families and carers, and use tools such as the Once for Wales Health Profile to make checks clear, accessible, and person-focused. (Read more on Once for Wales Health Profile here How the Once for Wales Health Profile helps improve consistency, safety and timeliness of healthcare for people with learning disabilities, by Paula Phillips, Senior Improvement Manager - Improvement Cymru)

Understanding death rates for people with learning disabilities in Wales

• People with a learning disability have worse health than people without a learning disability and are more likely to experience a number of health conditions.
• Adults with a learning disability on average die 19.5 years younger than the general population.
• Around 39% of deaths in people with learning disabilities are considered avoidable with good healthcare, compared to 9% in the general population.
• Read more on Mencap's website here: mencap.org.uk/health-inequalities

Summary from a Welsh Government Report:

A report by NHS Wales provided the first ever Overview of Mortality amongst People with a Learning Disability in Wales (2012-2022).

Mortality means the number of deaths in a group of people over a certain period of time.

The report shows big health gaps and calls for urgent, focused action:

Median Age of Death:

• Median means the middle value when all ages are listed in order.
• For people with a learning disability, the median age of death is 65 (half die younger, half die older).
• The most common age of death is 67.
• In comparison, the average life expectancy in Wales is about 79 years for men and 82 years for women.
• This shows that people with a learning disability die much younger than the general population.

Cause of Death

• Total deaths: 3,299 (2012–2022).
• Most common cause was a wide range of causes (895 deaths) (classified as “Other”)

• Next most common causes:
  • Cancer and other tumours (507)
  • Respiratory infections (499)
• These three categories together account for 73% of all deaths.

Increase in individuals diagnosed with a Learning Disability

• The report shows an increase in the number of people in the data set between 2012 and 2022.
• In 2012, there were 9,659 people identified.
• By 2022, that number had doubled.

Find out more on the mortality amongst people with a learning disability report on the link here: Mortality amongst people with a learning disability | GOV.WALES

This section explores the current service provision in health and social care services and support.

Statutory Care and Support Provision

A range of care and support services are in place across West Wales to support adults with LD to live fulfilled lives within the community.

Community Team Learning Disabilities (CTLD)

There are four Community Team Learning Disabilities (CTLD) Services across Hywel Dda for adults with learning disabilities. The CTLD are for people who have profound and multiple learning disabilities, often with challenging behaviour, or with mental health issues, or additional physical health needs.

In the CTLD there are:

• Learning Disability Nurses – Support health needs, give advice, and help people stay healthy.
• Occupational Therapist – Helps people with daily activities like cooking, dressing, and using equipment.
• Physiotherapist – Helps with movement, exercise, and physical health.
• Speech and Language Therapist – Supports communication and swallowing difficulties.
• Psychologist – Helps with thoughts, feelings, and behaviour through therapy and assessments.
• Psychiatrist – A doctor who treats mental health problems and can prescribe medication.
• Behaviour Practitioners – Help manage challenging behaviour and teach positive strategies.
• Social Workers – Support with care plans, housing, benefits, and safeguarding.

The CTLD can:

• Give specialist help for people with complex or challenging needs.
• Support access to health services and stay healthy.

• Work on projects to reduce health inequalities for people with learning disabilities.

Read more about the CTLD here: Learning disabilities service - Hywel Dda University Health Board

Regional LD Employment and training project

The Communities for Work Plus (CfW+) is a Welsh Government community-based employability programme is a run in partnership with all local authorities in West Wales. The programme is delivered through employability mentors based in community venues across Wales.

Read more on the scheme on the link here: Communities for Work Plus (CfW+) programme | GOV.WALES

A third sector in Pembrokeshire offer the supported employment programme, which is a group of local authority-based enterprises that employs over 75 people with a disability or work limiting health condition. As well as offering paid supported employment, it also offers work experience, training and a work-based day opportunities to a further approximately 75 people each week.

Read more about the scheme on the link here: Pembrokeshire Supported Employment Programme - Pembrokeshire County Council

Third Sector Provision

Carmarthenshire and Pembrokeshire People First Organisations

There is a Carmarthenshire and Pembrokeshire People First, both are independent charities run for and by people with learning disabilities and/or autism, both organisations run groups and safe spaces for adults with learning disabilities and autism.

Read more about Carmarthenshire People First on the link here: Home | Carmarthenshire People First

Read more about Pembrokeshire People First on the link here: Pembrokeshire People First (PPF)

Our Voice Our Choice

Our voice, our choice are based in Ceredigion and is a self-advocacy group set up for people with learning disabilities.

Read more here on the link here: Our Voice Our Choice | Newcastle Emlyn | Facebook

Clynfyw Care Farm is a Community Interest Company.

Clynfyw Care Farm supports disabled and vulnerable people using numerous meaningful projects as tools for learning. It offers a day centre, respite and a mental health recovery centre.

Read more about what Clynfyw Care Farm do on the link here: What We Do | Clynfyw Care Farm

Dream Team

The Dream Team is made up of members from CPF, PPF and Our voice Our Choice. Every member of the dream team has a diagnosis of a learning disability, autism or a cognitive difference. The Dream Team work with the health board and the county councils in West Wales to work on projects that change how care and support are delivered in our community.

Their moto is ‘nothing about us, without us’.

Read more about the Dream Team on the link here: The Dream Team! | Facebook

A range of care and support services are in place across the region to support adults with LD to live fulfilled lives within the community.

1. ‘A Change in Approach’: Coproduction and Involvement

Following the 2015 PNA particular focus has been placed on developing an ethos of co-production. The support and care services have aimed to include people with LD in all aspect of the care and support delivery plans in West Wales. The focus on co-production has led to the presence of service users on committees such as the RILP and the formulation of the ‘Dream Team’ and production of the West Wales LD Charter.

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

In combination with the LD charter and co-production approach, several other initiatives have been put into action. These projects have had capital investment and are all designed to address the varying gaps and needs outlined by the previous PNA. The key to these initiatives is to ensure that citizen’s voices are heard/listened to and ensure citizens can access the right information, when it is needed, in the way they want it and use this to manage and improve their well-being.

• 2.1 Health check champions

  PwLD supporting their peers to access Annual Health Checks thereby, reducing prevalent health inequalities.

• 2.2 Tech apps

  Co-producing accessible digital solutions to paper-based systems such as Health Passports and Care Plans and access to other on-line support, such as travel information.

• 2.3 Repatriation and Progression project

  A virtual team reviewing residential care placements to develop appropriate alternatives to long-term institutional care in -line with individual assessed needs

• 2.4 Regional LD Employment and training project

  Support to address limited opportunities for people with LD to engage in volunteering or paid work as identified in the LD Strategies across the region, by scaling-up a successful pilot in Pembrokeshire.

• 2.5 Exercise buddies

  Increasing the health and well-being of adults with a learning disability and their parents/carers, by developing a range of supported exercise and activity groups.

• 2.6 Supported accommodation

  Improving access to supported accommodation through improved policies, systems, processes and engagement with Registered Social Landlord (RSL) partners.

• 2.7 Transformation of day opportunities

  An engagement programme to develop a future model of day opportunities. Aimed at transforming day opportunities by developing alternative delivery models and piloting of new ways of working.

• 2.8 Prime of our lives

  Developing partnerships, disseminating information, sharing experiences, providing mechanisms to ensure that the voices of older people with learning disabilities are heard and responded to.

• 2.9 Carms PBIS

  Local services that support PwLD and their families, to reduce reported incidents of challenging behaviour, number of placement breakdowns and high cost of out of county placements.

• 2.10 LD Innovation Fund

  Opportunities to test alternative service delivery models to support and empower those with learning disabilities by piloting innovative and co-produced services that meet gaps in provision.

3. Hywel Dda UHB Support and Care Services

Across Hywel Dda UHB there are a arrange of services and specialists that help to care and support people with LD, these include: Consultant psychiatry, psychology, community nursing, Speech and Language Therapy, Occupational Therapy and Physiotherapy. In addition, there are several services specifically available to the LD community across the Hywel Dda UHB to help ensure people with LD have access to the services and care they need and minimise any health inequalities. These include:

• 3.1 Community Team Learning Disability (CTLD) service

  There are four Community Team Learning Disability (CTLD) services across the Hywel Dda area. The teams work together and are made up of learning disability nurses; occupational therapists; physiotherapists; speech and language therapists; psychologists; psychiatrists; behaviour practitioners; and social workers. The teams also work in the community supporting primary care, GPs and private providers, including clients in supported living and residential units, while also supporting individuals living on their own. The teams also support carers, families, and day services.

• 3.2 Learning Disability Health Liaison Service for adults and children

  The Learning Disability Health Liaison Service is for adults and children with learning disabilities who are having or due to have hospital treatment and may need advice and support.

  • Provides training to staff about the needs of people with LD.

  • Provides advice about following the LD pathway and using the ‘Care Bundle’

  • Liaise with the hospital staff to ensure that reasonable adjustments are in place

  • Provide advice and support to individuals and their carers during their hospital admission

  • Provide support to ease communication between the patient, carers, and hospital staff

• 3.3 PMLD/Complex Health Needs Clinic

  A new clinic due to be commissioned. The PMLD/complex health needs clinic aims to ensure that people with profound and multiple learning disabilities have access to consistent high-quality health support from the Learning Disabilities Service. Individuals are identified by members of the CTLD and referred to the PMLD Pathway. Aims and objectives of the clinic are:

  • Identify individuals who require multiple specialist LD health professionals

  • Complete coordinated assessments and reviews in clinic setting

  • Complete MDT care plan to meet complex needs and share with SU/carers/families

  • Identify interventions required and training needs for carers/families

  • Signpost to other professionals as required.

• 3.4 Learning Disability Intensive Support Team (LDIST)

  The Learning Disability Intensive Support Team (LDIST) is a pilot scheme. The LDIST consists of LD and MH nurses and health care support workers to provide intensive or additional support for adults with LD during a time of need. Support is available for a limited period to help manage or overcome a certain issue, problem or change. The support may include advice over the telephone, individually, in groups, by observational methods, assessments, via direct support, short term treatment, training to carers or through meetings. The LDIST work closely alongside CLDT and provide support that requires an increased level of input for a short and focused amount of time. The LDIST is community based, supporting people with LD/ their families or their care providers where they ordinarily live to continue delivery of care over the longer term.

The specific care and support options do vary across the different LA, with specifics available from: Carmarthenshire family information service, Pembrokeshire People First and Ceredigion Community Team for Learning Disability.

The Learning Disability Strategic Action Plan 2022 to 2026 is the Welsh Government's core strategy for developing and implementing all learning disability policy during the current government term.

The Action Plan focuses on several key priority areas:

• Team work across the government
• COVID Recovery
• Health
  • Reducing health inequalities.
  • Reducing avoidable deaths.
• Social Services and Social Care
• Independent Living and Access to Services
• Education: Includes services for children and young people.
• Employment and Skills
• Housing:
• Transport

Read more on the action plan on the link here:  Learning disability strategic action plan 2022 to 2026 | GOV.WALES

Read more on the delivery and implementation plan on the link here: Learning disability delivery and implementation plan 2022 to 2026 | GOV.WALES

This population needs assessment was coproduced with the Dream Team.

Under Review