Introduction
This strategy demonstrates the Trusts commitment to improving the care and treatment of people with learning disabilities when accessing Moorfields Eye Hospital NHS Foundation Trust services. One of the Trusts objectives within its Vision of Excellence (2017-2022) document is to ensure that we pioneer patient centred care with exceptional clinical outcomes and excellent patient experience.This means patients being treated at the right time, in the right place, by the right professional. People will choose Moorfields as their care provider because they will be confident of receiving the best clinical outcome and an excellent personal experience, including supporting the needs of patients with learning disabilities.
This strategy document provides Moorfields Eye Hospital NHS Foundation Trust with a firm basis over the next four years, for delivering high quality, safe, person centered care, which provides people with learning disabilities and their carers with the most positive experience possible.
People with learning disabilities have the right to the same level of healthcare as that provided to the general population and care should be flexible and responsive.
The main aims of this strategy are to:
- Enable staff to develop a better understanding of people with a learning disability and to equip them to deal more effectively with the particular needs of the individual.
- Improve the health and wellbeing of people with learning disabilities who access Moorfields services, working in partnership with people with a learning disability, their families and carers and the local community.
In this strategy the term learning disability has been adopted. The term learning disability is used throughout this report to ensure distinction from the broad range of learning difficulties and is referencing the Department of Health in England (DH 2001)definition of learning disability.
Learning disability and sight loss
Vision problems are surprisingly common among people with learning disabilities - of the 1.5 million people in the UK who are known to have a learning disability, at least one in ten has significant sight loss. This is particularly the case for people who are more profoundly disabled. Six in ten people with learning disabilities will need glasses and although this sight loss is less serious, individuals may not have access to glasses and/or the support to use them correctly.
Overall, the estimates suggest that in the UK today around 96,500 adults with learning disabilities are blind or partially sighted. This may be the result of an organic and/or structural problem linked to the cause of the learning disability and the eye and the brain are very closely connected.
Several conditions (such as Down ’s syndrome and cerebral palsy) are particularly likely to cause eye problems. Many people, particularly at that more profound end of the spectrum, have multiple disabilities. However, sight problems from the correctable to the disabling may be going unnoticed (RNIB).
National context
The Department of Health (2001) Valuing People suggests that learning disabilities areone of the most common forms of disability, affecting up to 1.5 million people in England alone. The NHS is firmly committed to reducing health inequalities and delivering year on year improvements in outcomes for people with a learning disability. The NHS Mandate sets a clear expectation that the NHS will deliver improved outcomes for people with a learning disability. Under the Equalities Act 2010, all public bodies are required to make anticipatory reasonable adjustments to their policies and practice in order to provide fair access and treatment to disabled people, including those with a learning disability.
The experiences and outcomes from services for potentially vulnerable groups of people in society, such as people with a learning disability can provide an important barometer for quality throughout the NHS.
There are predicted changes in health profile and patterns of morbidity for people with a learning disability (Romeo et al 2009, Cooper et al 2004); The prevalence of learning disability in the general population is expected to rise, with an expected growth in the complexity of disabilities; people with profound and multiple learning disabilities living into adulthood leading to more people needing to access mainstream health services in the future(Emerson and Hatton 2008; Parrot el al., 2008).
In England in 2012 it was estimated 236,000 children and young people under the age of 18 had a learning disability, while an estimated 908,000 adults had a learning disability. This means that roughly twenty people in every thousand have a learning disability (Emerson et al, 2012).
Figure: Learning disability PANSI and POPPI estimates: Projecting Adult Needs and ServiceInformation (PANSI) http://www.pansi.org.uk/ Projecting Older People Population Information (POPPI) http://www.poppi.org.uk/
The Government’s view on learning disabilities and other expectations
In response to the “Confidential Inquiry into Premature Deaths of People with Learning Disabilities” (Heslop et al 2013) the Government outlined their views that services have a legal duty to ensure that reasonable adjustments are made to remove any barriers which prevent or make it difficult for people with learning disabilities to access and use services.
NHS England are working with the Government and other health and care providers to make sure that people with a learning disability, autism, or who display behaviour that challenges, including people with a mental health condition get the best possible care.
This work is called ‘Transforming Care’ and focuses on improving health and care services so that more people can live in the community, with the right support, and close to home.
Organisational compliance requirements
There are a range of organisational requirements relating to learning disabilities and autism under the Care Quality Commission and The Monitor Compliance Framework – Governance Indicators for NHS Foundation Trusts, that:
- There is a mechanism to identify and flag patients with a learning disability, and protocols which ensure that pathways of care are reasonably adjusted to meet their needs.
- There is readily available and comprehensible information for patients with a learning disability about treatment options, complaints procedures and appointments.
- Protocols are in place to:
- Provide suitable support to family carers;
- Routinely include training on providing healthcare to patients with learning disabilities for all staff;
- Encourage representation of people with learning disabilities and their family carers;
- Audit practices for patients with learning disabilities and demonstrate the findings in routine public reports.
Local context
Moorfields Eye Hospital NHS Foundation Trust is firmly committed to reducing health inequalities and delivering year on year improved outcomes for people with a learning disability.
In relation to people with learning disabilities, their family and carers:
Quality…
- Ensuring patient satisfaction through person centred care that takes into account a person’s needs, concerns and preferences.
- Ensuring our practice is evidence based and follows best practice guidance.
- Ensure that learning from incidents involving people with learning disabilities who attend Moorfields Eye Hospital NHS Foundation Trust is shared.
Integration…
- Ensure pathways across services are designed around the needs of the individual; not making a square peg fit a round hole.
- Prevention that focusses on early intervention
Growth…
- Developing services that are responsive; high quality and innovative to meet the needs of people with a learning disability, their family and carers.
- The service will be recognised as a provider of high quality service both locally and nationally and people will choose to have their care within our services.
Delivering Moorfields Eye Hospital NHS FoundationTrust Strategic Priorities
What we will do to make this happen
We will work together with staff and other people who support you. To make this plan work we need the support of people with a learning disability and their carers. We will now work to make the plan happen and make sure that people with a learning disability are at the heart.
Outcome
- We will support you to get the right health care you need to live a healthy life.
Aim
- The person is involved as much as possible around decisions regarding their care and treatment.
- Care and support that takes into account a person’s needs, concerns and preferences.
- Clear identification of people with learning disabilities in all healthcare record systems.
Key milestones
- Clear and easily visible on health care records that the person has a learning disability.
- Includes flagging and helping hands stickers.
- Training to clinical staff on the Mental Capacity Act and how to support in best interest decisions.
- Promote Mencap’s Treat Me Well campaign
- Changes people need to support them accessing health services is clearly recorded on their record and in all referrals.
Outcome
- Working in partnership with families, carers and paid carers.
Aim
- Recognise and value the voice of carers.
- Carers being actively involved in care planning and decision-making.
- Supporting carers with information on services.
- Ensuring that carers have an assessment of their own needs so that they can stay healthy and well.
Key milestones
- Comprehensive carers leaflet.
- Supporting informal carers to be offered a carer’s assessment.
- People with learning disabilities, their families and carers to be represented in appropriate Trust meetings.
- Patient information screens throughout the Trust and Patient information Poster at City Road entrance.
- Trust website to include information for carers.
- Learning Disability and Dementia Work Group, and other groups, to have representation from people with learning disabilities.
Outcome
- Look at extra things we need to do, so people with learning disabilities can get health services as good as other people.
Aim
- Making sure that information on health services is accessible to people with learning disabilities
- Health care professionals develop more skills to support people. Giving people more time with health care professionals
Key milestones
- Accessible information available on the Moorfields website
- Consistent implementation of care pathways across the Trust.
- Easy read literature, hospital passport and patient letters available at health information hub at City Road.
- Easy read literature also available on the intranet Learning Disability page for all staff across the trust to access.
- Training and education for staff on the needs of people with a learning disability across all sites.
- People with learning disabilities, their families and carers to be involved in training where appropriate.
Outcome
- To have better information.
Aim
- Provide clear and easy to read information about our services.
- Information available for people on how to get help if they are not happy with the care they have received.
Key milestones
- Staff are able to clearly identify communication support needs from peoples (service users/their carers) healthcare records.
- A wide range of accessible information resources about services and treatments are available at the hospital sites.
- Information resources easily accessible on the Trust website.
- People with learning disabilities are involved in the development of information resources.
Outcome
- Employment in the NHS
- NHS Employers and NHS England are committed to supporting the employment of more people with learning disabilities.
Aim
- Demonstrate our commitment to employing people with learning disabilities.
Key milestones
- Pledge our commitment to employing more people with learning disabilities.
- Create an action plan to employ more people with learning disabilities.
- Implementation of Project SEARCH -
- A supported internship programme for young people with learning disabilities and/or those on the autistic spectrum.
References and Bibliography
Emerson E, Hatton C, Robertson J, Baines S, Christie A, Glover G (2012), People with LearningDisabilities in England 2012 Improving Health & Lives: Learning Disabilities Observatory.
Glover G & Ayub M (2010). How People with Learning Disabilities Die. Durham: ImprovingHealth & Lives: Learning Disabilities Observatory. www.improvinghealthandlives.org.uk/publications/928/How_people_with_learning_disabilities_die
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A & Russ L (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final report. Bristol: Norah Fry Research Centre, University of Bristol.
Heslop P, Blair PS, Fleming P, Hoghton M, Marriott A. & Russ L (2013). The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. The Lancet, Early Online 11 Dec 2013.
Mencap (2012). Death by indifference74 deaths and counting. A progress report 5 years on. London: Mencap
Michael J (2008). Healthcare for All: Report of the Independent Inquiry into Access toHealthcare for People with Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities
Parliamentary and Health Ombudsmen (2009) Six Lives: the provision of public services topeople with learning disabilities. The Stationary Office
Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, et al. (2013) Identifying the factors affecting the implementation of strategies to promote a saferenvironment for patients with learning disabilities in NHS hospitals: a mixed- methods study. Health Services and Delivery Research 1(13).
http://www.nhsemployers.org/your-workforce/plan/building-a-diverse-workforce/need-to-know/creating-a-diverse-workforce-learning-disability
http://www.rnib.org.uk/