Lewisham JSNA: Physical Health Needs of Adults with Learning Disabilities

Lewisham JSNA: Physical Health Needs of Adults with Learning Disabilities

Learning disability is ‘a significantly reduced ability to understand new or complex information and to learn new skills, with a reduced ability to cope independently, which started before adulthood with a lasting effect on development’. This topic summary explores the issue of the physical health needs only of adults with learning disabilities. These needs may be either similar to people of the same age without learning disabilities, or those affecting people with learning disabilities differently from their peers. These differences can be in terms of incidence or outcome.

What do we know?

Facts and Figures

• Approximately 20 people per 1000 in Englandhave a learning disability.
• Applying national figures to Lewisham’s population of 264,500 (and adjusting for local population age and sex structure) means that approximately5400 adults in Lewisham have a learning disability
• Learning disability prevalence can also be measured as the number of people registered with local GPs, based on QOF data. The figure below shows all UK PCTs arranged in rank order according to the prevalence of learning disability in 2008/9 from QOF data (number per 1000 population). Lewisham is highlighted orange and is in the bottom quintile. Prevalence is significantly lower than in PCTs in the middle and upper two quintiles.

Figure 1Patients registered on QOF databases as having a learning disability, 2008/9 by UK PCT (Lewisham highlighted orange). Y axis shows rate per 1000 population

Source: (accessed 1.10.2010)

• It is not possible to know to what degree QOF prevalence reflects true population prevalence and to what extent it reflects diagnostic patterns in individual PCTs.

People with learning disabilities[i]:

• Are four times more likely to die of preventable causes than other peopledue to untreated ill health, leading to a high likelihood that avoidable deaths may be occurring
• Are 58 times more likely to die before the age of 50 than other people; life expectancy is shortest for those with the greatest support needs and the most complex and/or multiple conditions
• Do not have the same access to health services as other people
• Have higher levels of unmet need and receive less effective treatment than the rest of the population; they are less likely to get standard evidence-based treatments and checks; less likely to be given pain relief; and less likely to receive palliative care.
• From a minority ethnic group have higher rates of morbidity and mortality
• Still encounter discrimination, abuse and neglect in health services
• Have higher rates of obesity, coronary heart disease, respiratory disease, hearing impairment, dementia, osteoporosis and epilepsy.

Some 26% of people with learning disabilities are admitted to hospital each year, compared to approximately 14% of the general population.

Trends

At present, the public health observatory does not have data to allow meaningful interpretation of trends over time.

Targets

The main targets related to physical health needs among people with learning disabilities relate to the provision of health checks. There are not yet formal quantitative outcome targets.

PCTs are required to offer GP practices in their area the opportunity to provide health checks for people with learning disabilities as part of a Directed Enhanced Service (DES) scheme. The DES was originally agreed for two years (2008-9 and 2009-10) and has been extended for at least another year (2010-11).

DES specifications for health checks required that they were:

• undertaken by a provider with appropriate training
• based on a local protocol that included:

›review of physical and mental healthwith referral through the usual practice routes if health problems are identified

›health promotion

›review of chronic illness

›physical examination

›review of epilepsy

›review of behaviour and mental health

›check on the accuracy of prescribed medications

›review of co-ordination arrangements with secondary care

›review of transition arrangements where appropriate

Performance

In 2009/10, only 5% of people in Lewisham with a known learning disability were recorded as having had a health check meeting theDES specification. Only 3 other English PCTs did worse, performing no health checks at all(See Figure 4).

It is important to note that the 2009/10 data shown were collected just as the Lewisham health checks programme was beginning. Forthcoming 2010/11 data are expected to reflect this new activity and show significant improvements.

Figure 2Percentage of people with a known learning disability having a health check (all PCTs in England). Lewisham is highlighted orange, at far left of chart.

Source: (accessed 1.10.2010)

This figure of 5% having had a healthcheck is also low compared to all other London PCTs (Figure 5). One PCT did no checks, while City and Hackney did the most, with a percentage of 72.9%.

Figure 3 Percentage of people with a known learning disability having a health check (all PCTs in England). Lewisham is highlighted orange, at far left of chart.

Source: (accessed 1.10.2010)

Page 1 of 7

Local Views

Seventy local people with learning disabilities discussed health issues in Lewisham and invited representatives from local health providers to listen and comment on their concerns as part of “Speaking Up in Lewisham”people's parliament day.A follow-up day is being held in October 2010 week to ascertain how much progress has been made against the issues raised. These issues have also been incorporated into the action plan of the Good Health Sub-group (reporting to the Learning DisabilitiesPartnership Board), which includes members both primary and secondary care as well as specialist learning disabilities services.

Additionally, PCT commissioners met with carers of people with learning disabilities as part of the NHS London health self-assessment framework.

National and Local Strategies

Locally, the 2010 NHS Lewisham document, “Learning disabilities performance and self assessment framework: top targets, key objectives and progress criteria 2010”, addresses the physical health needs of people with learning disability. The document provides a framework for progress, outlining issues to be addressed as well measures and suggested evidence of progress towards the objectives. Key objective 2 is that “PCTs are working closely with local Partnership Boards and statutory and other partners, to address the health inequalities faced by people with learning disabilities”

Nationally, UK legislation underpins the delivery of health care for people with learning disabilities, including:

• The Disability Discrimination Act (1996)

This relates to provision of equal treatment. It includes a duty to promote equality for disabled people and take steps to take account of disabled persons’ disabilities even where that involves treating them more favourably than others. Since 1999 providers have been required to make ‘reasonable adjustments’ to the way that services are delivered in order to meet the needs of disabled users.

• The Mental Capacity Act (2007)

This describes treatment for people who lack capacity. The Act states that a person must be assumed to have capacity to make a decision regarding his or her care or treatment unless proved otherwise. The aim is to protect people with learning disabilities and other conditions associated with cognitive impairment, such as Alzheimer’s disease, by providing guidelines for carers and professionals about who can take decisions in which situations. The Act requires ‘all practicable steps’ to present information in a way that is appropriate to the person’s circumstances.

• The Carers Act (1995)

This gives people who provide ‘substantial care on a regular basis’ the right to request an assessment of their needs from social services. A ‘New Deal for Carers’ was announced in 2007. This included additional monies for councils to provide emergency cover for carers, the development of a helpline and an expert carers’ programme.

Current Activity and Services

• The Lewisham community learning disabilities team has produced a care pathway for people withlearning disabilities and dementia. This enables appropriate medical checks to take place in a timely manner to ensure accurate diagnosis and better future planning.

• Lewisham learning disabilities commissioning has funded a project to ensure that the same symbol/picture system(Photosymbols) is used by all services in the borough (local authority and NHS). This project is to be extended to Guys, and St Thomas’ Hospitals Trust with the aim of producing common templates for e.g. outpatient letters that all ward staff can use.

• Lambeth, Southwark and Lewisham have agreed to work jointly to produce a common hospital passport for people with learning disabilities,consider a joint training programme for all health staff and ensure that, where possible, any secondary care initiatives are supported on a sector-wide basis.

• Guy’s and St Thomas’(GSTT) have committed recurrent funding for a learning disabilities coordinator role within the hospital. Any work undertaken within GSTT will be shared with both King’s CollegeHospital and University Hospital Lewisham to ensure consistency of approach.

What is this telling us?

What are the key inequalities?

People with learning disabilities have markedly worse health than the general population. Specifically:

• Around one person in three with learning disabilities is obese, compared with one in five of the general population;
• The incidence of respiratory disease is three time higher in people with learning difficulties than in the general population;
• Approximately 40% of people with learning disabilities have a hearing impairment and many have common visual impairments;
• The rate of dementia is four times higher and the rate of schizophrenia three times higher than in the general population;
• People with learning disabilities tend to have substantially lower bone density and experience higher levels of osteoporosis;
• Epilepsy is over 20 times more common in people with learning disabilities than in the general population, and sudden unexplained death in epilepsy is five times more common;
• About 26% of people with learning disabilities are admitted to hospital each year, compared with 14% of the general population;
• Those under the age of 50 are 55 times more likely to die prematurely. For those over 50, the risk is 58 times more likely.

There is also evidence that inequalities are worse among people from ethnic minority groups.

Page 1 of 7

What are the key gaps in knowledge and services?

The key gap in the short term in Lewisham is that too few people with alearning disability are receiving the recommended annual GP health check. This shortfall is being addressed and involves ensuring that:

• people with learning disabilities are registered with, and known to, their GP practice with a consistent read code (918E)
• people with learning disabilities are offered a GP health check
• GP health checks are done to a standard of thoroughness set out in national guidelines.

Other gaps include:

• accessibility of information (e.g. needing simpler leaflets using pictures as well as words)
• health professionals’ understanding of the Mental Capacity Act
• the incorporationof the particular health needs of people with learning difficulties into mainstream health agendas (e.g. considering their special needs in screening programmes like bowel cancer screening)

What are the risks of not delivering our targets?

The most important risk is that people with disabilities will continue to experience avoidable health problems.

A critical risk for the PCT (and organizations that, in the future, take on the role and responsibility of PCTs) is being in breach of the Disability Discrimination Act through failing to provide adequate services.

What is coming on the horizon?

Health system changes leading to the abolition of PCTs by 2013 (and possibly earlier in London) will have important implications for delivery of health services for people with learning disability. It is important that the responsibility to provide focused services outlined in this JNSA document is properly handed over and taken on by a new lead organisation(s).

What should we be doing next?

• Continue to increase the number of health checks for people with known learning disability, and assess the impact of this years’ work in the 2010/11 report from the Learning Disabilities Public Health Observatory
• Improving the identification and registration of adults with a learning difficulty who are not currently registered with a GP practice
• Ensure that people with learning disabilities are represented and their special needs considered in mainstream health programmes like cancer screening
• Audit and research to continue to explore ways in which significant health inequalities can be redressed
• Forward planning to ensure a smooth transition of services and responsibility post abolition of PCTs

Page 1 of 7

[i] NHS Yorkshire and the Humber. Healthy Ambitions for People with Learning Disabilities. September 2010