Care & Support Services - Understanding Health
Health and Wellbeing
Health & well being
There is a strong link between health and well being and social inclusion. An individual with a learning disability is more likely to experience a broader range of health related issues than those who do not.
However, it is important for both carers and family to recognise when there are changes to the general health and well being of the individual they care for, as this may not be a result of their condition, but a more serious problem.
This section will seek to raise awareness of health issues related to learning disabilities and provide information on: - Why it is difficult for individuals with a learning disability to sustain good health
- Government policies
- Negative attitudes
- Health action plans
"There is a strong link between health and wellbeing and social inclusion. Having something useful to do, having enough money to live on and feeling that you matter and have something to offer to other people are all good for your health. On the other hand, if you are to live as full a life as possible you need access to opportunities to maintain your health. For too long we have had low expectations of the health of people with learning disabilities."
Scottish Consortium for Learning Disability - Access to Primary Care
Awareness of Health Issues
Individuals with a learning disability are likely to experience a broader range of health problems, both physical and mental, than is found in the general population. For example, individuals may experience:
- Visual Impairment - The Department of Health suggests that 30 percent of individuals with a learning disability have significant problems with their sight. Other surveys have indicated prevalence rates as wide-ranging as 40-95 percent of individuals with a learning disability having some level of visual defect.
- Hearing impairment - Well over 50 percent of individuals with Down's Syndrome have a hearing impairment of a varying degree. Glue ear is also a common condition with Down's Syndrome. This is where the middle ear becomes inflamed and the space that normally contains clear fluid and air accumulates a sticky secreted fluid and needs repeated medical and sometimes surgical attention.
- Physical disability - It is reported that up to 30 percent of individuals with a learning disability also have a physical disability of some description. The most common cause of these physical disabilities is Cerebral Palsy.
- Epilepsy - About 30 percent of individuals with a learning disability have some form of epilepsy and this increases to 50 percent for those who have a severe learning disability.
- Heart Disease - Congenital heart disease is found in 40-45 percent of individuals with Down's Syndrome and in some cases cardiac care services may be needed for the rest of an individual's life.
- Respiratory Problems - Individuals with Down's Syndrome, may experience difficulties with the sinuses and breathing properly due to problems with skull formation and a large tongue and open mouth. This can lead to respiratory problems and repeated chest infections.
- Alzheimer's Disease - As individuals with Down's Syndrome now live longer we are seeing an increase in the number of people diagnosed with the early onset of dementia. In some surveys dementia changes in the brain have been noted in up to 50 percent of individuals with Down's Syndrome, compared to between five and ten percent of the general population at the equivalent age.
- Mental Health - It is said that about 25 percent of the general population are likely to have some mental health problem in their lifetime, compared with nearly 40 percent of individuals who have a learning disability. Schizophrenia occurs in three percent of individuals with a learning disability compaired with one percent of the general population.
- Dental Hygiene - Some 36 percent of adults with a learning disability have unhealthy teeth and gums, whilst for individuals with Down's Syndrome the figure approaches 80 percent!
- Body weight - People with a learning disability are more likely to be either over or underweight than the general population.
Why has it been difficult for individuals with a learning disability to sustain a good health record?
It has often been difficult for individuals with a learning disability to maintain and improve their health in the past, for a number of reasons:
- They may be living lives that are not conducive to good health, including the effects of discrimination, disadvantage and social exclusion
- They do not have enough knowledge to identify and address their own personal health requirements because of intellectual disability
- They may be solely dependent on others (i.e.carers) to be mindful of their health needs
- They have had poor access to formal healthcare and an inadequate response from healthcare providers
- Poor personal literacy levels restrict access to information
- They have communication problems i.e. speech impediment, poor articulation etc.
- Stigma and socially devaluing attitudes reduce concern or priority about health needs and problems
- They are disregarded from sexual health and sex education because of prejudiced attitudes
- They are underrepresentated in health screening
- Inadequate attention has been paid to health issues on a social policy level
Government Reports
Throughout the long stay hospital closure programme of recent years, Government reports have continually referred to the increased health needs of individuals with a learning disability. These include:
- Signposts for Success - Dept. of Health (1998)
- Once a Day - Dept. of Health (1999)
- Facing the Facts - Dept. of Health (1999)
- Valuing People - Dept. of Health (2001)
The latest of these, 'Valuing People', states in chapter six that the Government's objective in connection to individuals with a learning disability is: -
'To enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a consistently high standard and with additional support where necessary'.
As laudable as the objective is, some people feel it is nevertheless an indictment on the NHS regarding the service which has historically been given to individuals with a learning disability. Such a mainstream objective is no less than any person should expect and should already be provided as a base service, rather than having to raise it as a major target in a national policy initiative in the new millennium.
'Treat Me Right' Report
MENCAP's report, 'Treat Me Right - Better Health Care for People with a Learning Disability (June 2004)', addressed concerns of equal access to health services. Amongst the many concerns included that of premature deaths in relation to 'treatable' conditions, which generally do not prove fatal for people who do not have a learning disability. Cases were noted where negligence appeared clear, yet when taking something of an overview, these seemed to have a wider perspective than just individual errors, but appeared to illustrate an underlying social devaluation through dated attitudes.
Some of the other reasons noted for failure to deliver an appropriate health service to individuals with a learning disablility included:
- Most General Practitioners having had no training with respect to learning disabilities
- 'Diagnostic overshadowing' affecting the attitudes and assumptions of medical and nursing staff. This would mean wrongly attributing symptoms to the 'condition of a learning disability', when such symptoms or changes would have raised concerns in others
- A failure to communicate with the patient and understand their needs
- Poor quality of care. It is becoming a norm for most hospitals to expect the family or carers from the residential home to come and provide care and support to the patient on the ward. When this is not the case, for some reason, the patient's general care appears to be put at risk, despite the 'duty of care' remaining clearly with the hospital
- Appointments being too short
- Lack of accessible health information
- Health screening programmes failing to reach individuals with a learning disability
Negative Attitudes -Treatable Conditions
The Julian Worricker programme on BBC Radio 5 on 23rd January 2005 addressed concerns over the health needs of individuals with a learning disability in the NHS. Contributors gave evidence of a recent survey of three London Boroughs where individuals with a learning disability were 58 times more likely to die before 50 years of age than other people. Similarly, it was reported that 50 percent of individuals with a learning disability die of a chest infection compared to only 16 percent of the general population. Chapter 6.8 of 'Valuing People (2001)' states that evidence of avoidable illness and premature death amongst individuals with a learning disability is a major cause of concern for the Government.
Professor Sheila Hollins, a contributor on the programme, said individuals with a learning disability appeared to be dying, on occasion, of treatable conditions. She went on to describe that it is as if there is, in some parts of the health service, an 'institutional' discrimination towards individuals with a learning disability. There is a lack of awareness of their needs and of how services needed to adapt to give them equal access. These may not be conscious features, but they are still present and proved by people not having equal access to medical services.
Professor Greg O'Brien, commenting in the same programme, said that it is as if the NHS sees only the learning disability and not what is behind it. There is a perception that people who look different and look less able tend to be less healthy. This being seen as 'different' ensures that on some occasions individuals are being treated differently and are deemed to be less deserving. There appears to be a problem regarding appropriate attitudes to individuals with a learning disability, although he did not believe it was deliberate.
Furthering Equal Access
MENCAP made the following recommendations in the 'Treat Me Right' report which it feels would assist the Government in achieving its policy of providing equal access to health care services to individuals with a learning disability and thereby complying with the requirements of the Disability Discrimination Act:
- Specific training for all health care staff. This should consist of disability awareness training with a focus on the values and attitudes surrounding learning disabilities
- Training for General Practitioners who are the front line of primary health care
- Communication skills to use with individuals who have a learning disability
- Longer and more flexible appointment times
- Accessible forms of information to be provided in all health practices
- Health screening programmes to recognise the needs of individuals with learning disabilities and what might be required to achieve access
- Identification on health records that the individual has a learning disability
- Use of appropriate ways of 'auditing' to monitor progress of how well individuals with a learning disability are accessing mainstream services
- Annual health checks should be offered to all individuals with a learning disability
- Hospitals to fulfil their 'duty of care' in providing appropriate levels of staffing to support patients with a learning disability - for some this may even be 1:1
- Inquiries into premature deaths
Health Action Plans
Supporting the 'Valuing People (2001)' White Paper and concern for health related issues, additional guidance was issued by the Department of Health in July 2002 in the form of 'Action for Health - Health Action Planning and Health Facilitation (Detailed good practice guidance on implementation for Learning Disability Partnership Boards)'.
This document is very detailed but gives an introduction to 'Health Action Planning' as follows:
'A 'Health Action Plan' details the actions needed to maintain and improve the health of an individual and any help needed to accomplish this. It is a mechanism to link the individual and the range of services and supports they need if they are to have better health.'
The plan is primarily for the individual with the learning disability and is usually co-produced with them. Useful (secondary) functions of Health Action Plans might also be:
- To educate or inform the individual and those working with them about health
- To improve the co-ordination of services for the individual
- To influence services and other structures which affect the individual's life (including the collection of data to inform change)
However, if there is conflict between the primary purpose of the Heath Action Plan in maintaining and improving the health of the individual and these secondary purposes, the former must take precedence.
The guidance covers the following areas in detail:
- Health Action Plans
- Principle of Health Action Planning
- Who will have a Health Action Plan
- Health Action Planning in practice - Health Action Plans for people with:
- Sensory impairments
- Profound and multiple impairments
- Health Action Plans and black and minority groups
- Health Action Plans at the time of transition
- Choice, consent and confidentiality
Among the many important initiatives in Health Action Planning guidance is 'Health Facilitation'. 'Valuing People (2001)' stated there should be clearly identified Health Facilitators for individuals with a learning disabilitity. The two levels of the Health Facilitation role are described as:
- Level one - Service development work and informing planning and commissioning
- Level two - Person to person work with people with learning disabilities
Level one is clearly a more strategic and corporate role. As we are addressing the question of 'Understanding Individual Needs' let us examine closer the second level 'person to person role'. The guidance document lists the following as the essential responsibilities of facilitation: - Helping to identify and record health targets for the Health Action Plan
- Supporting access to all health services including NHS screening programmes
- Ensuring the Health Action Plan is an integral part of Person Centred Planning, transition planning or other personal care plans
- Helping to identify and meet health education needs
- Monitoring individual health outcomes through regular review and, where necessary, agreeing changes to the Health Action Plan
Additional responsibilities may include:
- Ensuring an individual living in residential care has an annual health check as specified within the National Minimum Standards for Care Homes
- Ensuring an older individual with a learning disability benefits from the Single Assessment Process, as specified in the National Service Framework for Older People
- Training family carers to ensure optimum health outcomes
- Supporting individuals with a learning disability and their carers to raise concerns about, complain about or compliment service providers on the quality of services provided and liaising with PALs in a NHS trust about a complaint or concern where necessary
- Reporting discriminatory practice to Partnership Boards to ensure they are aware of concerns in practice
- Reporting any service deficits which limit individual health improvement
