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Learning Disability

What is a Learning Disability?

Within Greater Glasgow & Clyde there are approx. 5700 adults with learning disabilities. A learning disability is a significant, lifelong, condition that starts before adulthood. It affects a person’s development and means they need help to:

  • Understand information
  • Learn skills
  • Cope independently

Learning difficulties, such as dyslexia, ADHD, dyspraxia and speech & language difficulties are not defined as a learning disability due to the specific nature of their developmental delay.

Learning Disability and Discrimination

People with learning disabilities represent a diverse group. Historically, people with learning disabilities lived in hospitals. Then, in 2000, policies were introduced which advocated that people with learning disabilities should be supported to live in their local communities and have equal access to employment opportunities & health services. Despite this shift towards independent community living, people with learning disabilities are one of the most disadvantaged groups within Scotland.

90% of people with a learning disability have described an experience of bullying or harassment, with 32% experiencing this daily.

65% of people with a learning disability would like a job. In 2010/2011, 6.6% of people with a learning disability were in paid employment, the majority of whom worked less than 16 hours a week. This is significantly less than in the working age population (77.3 %) and the disabled population (47.4 %), NHSGGC is one of the partners involved in running an award winning learning disability employability programme called Project Search.

People with learning disabilities die younger than the general population – on average 13 (for females) or 20 (for males) years younger, with many of these deaths being from preventable causes.

Learning Disability and Other Protected Characteristics

People with a learning disability will also possess other protected characteristics and their experience of inequality will be made worse as a result.

Protected characteristics – characteristics that are protected by law, such as Disability – are listed on our home page and include sex, age and race.

Gender-based Violence & Women with Learning Disabilities

Research tells us that disabled women and girls are more susceptible to gender-based violence than non-disabled women and girls. Women with a learning disability are at greater risk of sexual abuse and are more likely to experience violence from perpetrators that are not partners, most notably other service users and men with learning disabilities.

Dependency on care, attitudes of staff and carers, poverty and isolation can make women more vulnerable or make it more difficult for them to disclose abuse. Poor availability of services such as day care centres also make it difficult for women to find help and support. As a result, the abuse often goes undetected and unreported.

To tackle gender based violence and support women with learning disabilities, services need to remove barriers to disclosure and provide better access to information and health and support services. Within NHSGGC, a programme of work is underway to raise awareness about the experience of gender-based violence amongst people with learning disabilities and to build staff confidence and competence in knowing how to identify and respond to this.

Learning Disability & Human Rights

When the behaviour of people with learning disabilities challenges carers and services, complex and competing human rights issues may emerge.

A Human Rights impact assessment was carried out in Netherton Learning Disabilities Unit. This initiative looked at human rights in relation to everyday practices in the Unit.

This work, which included workshops and interviews with staff and patients, highlighted a number of issues around the patients’ rights. For example, some residential units allowed free access to kitchen areas whereas others were much more restrictive. By using human rights guidelines along the PANEL principles set put below, they were able to explore the differences between practices in a patient-centred way.

  • Participation – People should be involved in decisions that affect their rights.
  • Accountability – There should be monitoring of how people’s rights are being affected, as well as remedies when things go wrong.
  • Non-Discrimination – Nobody should be treated unfairly because of their age, gender, ethnicity, disability, religion or belief, sexual orientation or gender identity. People who face the biggest barriers to realising their rights should be prioritised when it comes to taking action.
  • Empowerment – Everyone should understand their rights, and be fully supported to take part in developing policy and practices which affect their lives.
  • Legality – Approaches should be grounded in the legal rights that are set out in domestic and/or international law.
Why Learning Disability matters to Health

People with learning disabilities experience some of the poorest health outcomes of any group in Scotland and much of their health needs are unrecognised and unmet. In addition to the same everyday health needs as the general population, people with learning disabilities have a different pattern of health needs

People with learning disabilities –

  • have differing causes of death (respiratory illness, cardiovascular disease and gut cancers, as opposed to lung cancer, heart disease and strokes in the general Scottish population)
  • have more physical health problems
  • are more likely to have mental health problems – 40-50% of the learning disability population compared to 1-10% of general population
  • on average, have 5 long term health conditions, compared with 1 or 2 in the general population
  • are more likely to have a sensory impairment (approximately 60% will have a visual impairment and 40% will have a hearing impairment)
  • are more likely to be underweight or obese than the general population.

Poor health can result from social isolation and deprivation. A large majority of people with learning disabilities have endured a lifetime of exclusion resulting from lack of choice and opportunity. People with learning disabilities experience a number of barriers when trying to access appropriate healthcare within the NHS. These include:

Communication – Many people with a learning disability may take longer to express what they want to say and may simply require patience and understanding on behalf of the listener to allow them to do this. Some people with learning disabilities have limited verbal communication skills and difficulties with understanding and processing information which can impact on their ability to understand health information. Health services are reliant on written information for advice, appointments, signs and information and this creates a significant barrier if it is not provided in an easily understood way. NHSGGC’s Clear to All accessible information policy aims to ensure that we provide effective communication for everyone and that information is provided in the format and language required.

Physical access – NHS establishments are required by law to be accessible to those with a disability. However, accessibility and signage is not always clear and navigating health centres and hospitals can be difficult for wheelchairs users or those with poor mobility who also are unable to read.

Attitudes – NHS staff all strive towards person centred care. However, many have not had experience of working with people with learning disabilities or had learning disability awareness training. This can often lead to negative assumptions about a person’s ability, even when it is well intentioned eg, a health care professional may talk to a carer to obtain health information instead of asking the person directly.

Diagnosis overshadowing – This occurs when a behaviour change is attributed to a person’s learning disability when it is in fact due to physical ill health or pain. Unfortunately this is common for people with a learning disability and can lead to delayed treatment and in some cases death.

How we are addressing learning disability issues

NHSGGC is working to ensure that the organisation is addressing health inequality experienced by people with learning disabilities.

NHSGGC continues its engagement activity with patients and 3rd sector organisations. This includes our co-production work with The Life I Want partnership forum. This work is a valuable way of sharing information between our own organisation, learning disability support services and patients themselves and is one of the main ways in which we receive up to date feedback from patients regarding their experiences of accessing and using our health services.

We are also planning a new programme of staff training designed to provide a better awareness of how we can provide the best support for patients with a learning disability and improve their experiences of using our services. Patients with a learning disability will be involved in developing and delivering this training.

The Keys to Life (2019) is the Scottish Government strategy to promote inclusion and equality in all areas of life for people with learning disability. NHSGGC is committed to delivering these recommendations which promote a vision and shift towards independent living, employment opportunities, equal access to health services, education that meets the needs of every child and a Scotland with zero tolerance for inequalities.

The Learning Disability Liaison Team supports and enables NHSGGC services to adapt their approaches to meet the needs of people with learning disabilities. The Team supports the system to anticipate and respond to the general medical needs of people with learning disabilities. It also works with local learning disability teams and other agencies to ensure a co-ordinated approach in addressing health inequalities for people with learning disabilities.

For information contact: PCLTAdmin.Generic@ggc.scot.nhs.uk

A Strategy for the Future is NHSGGC’s service redesign for all community based learning disability specialist services. The redesign will enable NHSGGC services to deliver responsive and appropriate healthcare and provide specialist support when required. It aims to give people with learning disabilities more equality and control as well as improving health, wellbeing and safety.

The Scottish Learning Disabilities Observatory has been funded by the Scottish Government to help build understanding of the causes of poor health and health inequalities experienced by people with learning disabilities. The aim of the Observatory is to produce high quality evidence to support learning disability policy and practice and to work in partnership with the NHS, local authorities and Scottish government to improve the information gathered on people with learning disabilities.

Project Search is a targeted programme of employment training and support for young people who have a learning disability (18-24). Participants learn job skills which are transferable and marketable when looking for full time paid work. Students are supported to find work with their job coach either on site with the host business or with another employer. NHSGGC is planning for the 3rd year of this programme following 2 successful years resulting in graduates securing employment within NHSGGC.

As part of A Fairer NHSGGC 2020-24 we have a specific outcome looking at improving service delivery and experience of healthcare appointments for patients with a learning disability. This includes a programme of engagement with patients and third sector organisations to ensure service users are involved in this work.

People’s Experiences

Edwards’s Story

The video below is from a website featuring people with learning disabilities and their carers, written in collaboration with the Rix Centre. It presents the thoughts and feelings of these individuals in their own words, so that doctors and other health professionals can see what people want and how they wish to be involved in their own healthcare.

NHS Greater Glasgow and Clyde gathers stories and experiences of patient with a learning disability through our ongoing engagement activity. Some of these individual patient experiences will be used to inform our staff training programme.

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