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. The charter 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.

  • In 2020 there were an estimated 1,206 people aged 0-17 with a moderate learning difficulty in Carmarthenshire, 770 in Pembrokeshire, and 395 in Ceredigion
  • In 2020 it was estimated that there were 68 people aged 0-17 with a profound and multiple learning difficulty in Carmarthenshire, 43 in Pembrokeshire, and 22 in Ceredigion
  • In 2020 it was estimated that there were 241 people aged 0-17 with a severe learning difficulty in Carmarthenshire, 154 in Pembrokeshire, and 79 in Ceredigion
  • In 2018 there were an estimated 2,006 people on the learning disabilities Quality and Outcomes Framework (QOF) register in the West Wales region.

To provide an assessment of the current services and to determine the gaps and areas for improvement, several engagements were undertaken, both through interviews and workshops that captured the views of PwLD and those who provide and deliver their care. These groups include:

  • Services Users: Engagement with the LD community has been through workshops and responses with members of the Dream Team. The Dream Team primarily consists of people with moderate LD and tend to be more independent. In addition, parents and carers involved in support and caring for people with LD with more complex needs were also invited to provide their views on their behalf

  • Service providers: Opinions from a range of different specialities, services, and commission bodies across the three local authorities.

Engagement activity with PwLD and those providing care and support has demonstrated that although there is some way to go, lessons learned from the previous PNA in 2017 have resulted in several improvements and developments in the approach to supporting PwLD, which include the development and implementation of the LD Charter and the work of the Dream Team.

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.

Dream Team

The Dream Team is a collaboration of people and members from the Pembrokeshire and Carmarthenshire People First charities, together with representatives from Ceredigion. The members of the Dream Team consist of citizens with first-hand expereince of living with a LD. The Dream Team are a group of individuals with an LD who advise care providers and the local authorities on what really matters, to hold the services to account and to ensure that the care and support needs that matter most to people with LD are being met.

LD Charter (

Over the past 5 years, the LD community in Carmarthenshire, Pembrokeshire and Ceredigion have worked together to develop a Charter – a simple list of things they expect, and need, to live fulfilling lives.

“The West Wales LD Charter brings together our rights, our needs, and our wants, in a simple document aimed at everyone in our community. “It covers crucial areas like support, health and relationships, and brings them all together in a document anyone can – and should – sign up to. “I wasn’t sure about using the words “we demand” – but we do! It’s only fair that we demand to be treated like everyone else, to have a social life, to do things that fulfil us, and to be treated with dignity and respect.”

James Dash, Co-Chair of the Learning Disability Programme Group

The West Wales LD Charter has been developed with support from the Welsh Government’s Intermediate Care Fund, the West Wales Care Partnership, and Pembrokeshire College. It is supported by the County Councils of Carmarthenshire, Ceredigion and Pembrokeshire, and the Hywel Dda University Health Board. The Charter has been developed and led by the Dream Team, people with LD’s, and not professionals, social services or even charities. The Dream Team are also involved in holding people to account. They visit businesses and organisations to get them to sign up – and checking that they really do follow through on their commitments.

The LD charter underpins all the future planning and provision for LD services in West Wales and has been designed by people with LD for people with LD.

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 main gaps and needs identified in the chapter are covered by 6 main themes, some of which are also common to other population groups:

  • Improved Communication
  • Improved Access, Support and Planning of Peoples Care
  • Better Training and Education for All
  • Changes to How Placements and Accommodation is managed
  • Improvement in how Transition between Services & Specialities are Managed
  • Improved Services and Education for Children & Young People with LD and their families.

Children and Young People

The following areas were identified in respect of services and provision for children and young people with LD. These included:

  • A need to focus on children with LD to ensure they are getting the support required
  • Implementation of the Additional Learning Needs Act
  • A need to provide specialist training and support to foster carers who look after children with learning disabilities
  • Ensuring that parents of children and young people with LD can access information, advice and support if they need it.
  • There needs to be an overall strategy and better links between health, education, children’s and adult social care to ensure there is a joined-up way of meeting the care and support needs of children and young people.

Coronavirus has had a continued profound effect on PwLD in Wales. According to Phase 2 of a 2021 Disability Wales study, during the pandemic almost 30% of PwLD paid for a direct payment service they were not receiving and around 70% of PwLD had restrictions on visitors [1]. PwLD rely on contact with their GP, community or learning disability nurse and / or social worker to maintain their health and well-being. During the pandemic, PwLD had more difficulty accessing GPs, social workers and day / community services, leading to increased social isolation, a negative impact on their mental health, general health and well-being and increased stress for their carers and support network. 67 A report published in February 2021 by Improvement Cymru, shows that in Wales, PwLD are 3 to 6 times more likely to die from Coronavirus than the rest of the population, due to inherent health inequalities.

“This report is an essential piece of on-going work to highlight the health inequalities we so often find with people with learning disabilities. This report is vitally important in maintaining the focus on improving the lives of people with a learning disability both now and in the future.”

Dr Rachel Ann Jones, Learning Disabilities programme Lead at Improvement Cymru

The pandemic has impacted on the implementation of continuous improvements planned for LD services in the region, including a buddying programme between PMLD and members of the Dream Team.