Changing Minds: the stigma of mental disorder

People with a learning disability are at risk of the stigma of mental disorder and neglect of their health needs as they grow old. Not fitting neatly into either the NSF for Mental Illness or for Older People, their needs are addressed in the less widely known strategy paper Valuing People. Professor David Jolley, Dr Michael Clark, Diane Webb and Lynda Willetts explain why mainstream services must become proactive to promote better health in this vulnerable group.

n the months between the loudly announced but delayed publications of the National Service Framework for Mental Illness (Adults of working age) and the National Service Framework for Older People 1,2 a White Paper for learning disabilities was squeezed quietly into the policy frame.

Valuing People3 focuses attention on the health and social needs of individuals with a learning disability; but who knows about it and who will take notice of its content especially where this relates to older people?

By embracing normalization as a philosophy and aligning with education, rather than health care, the learning disability lobby has put at risk the very people whose interests it aims to promote. Neither the NSF for Mental Illness, nor that for Older People devote time to learning disability. Normalization would demand they should, but consideration of statistics explains why they don't. Not even the Royal College of Psychiatrist's Changing Minds campaign identifies learning disability within its list of target stigmatized conditions4.

People who survive into later life with a learning disability are in danger of stigma and of neglect of their medical and social needs. They are small in number (indeed this population hardly existed in previous generations), not well equipped to speak up for themselves, often hidden from view by their family or other carers and peripheral in interest to the mainstream specialist services.

People with learning disability often have greater health needs than the general population5. The literature reports that, although life expectation for people with learning disability has increased, it still remains lower than that of their contemporaries. Many are at risk of cardiovascular disease because of their limited involvement in activities and poor mobility, high levels of cholesterol and of obesity. Deaths from cancer are increasing, especially from cancers of the gastro-intestinal tract which may be related to diet and obesity. Incontinence of urine and faeces and impairment of eyesight and hearing are more prevalent than in others of the same age. Psychiatric symptoms may persist from earlier years or arise for the first time, there being a particular relationship between Down's Syndrome and Alzheimer's disease.

People with learning disability have lower expectations of health and well-being, tolerate persistent symptoms and don't like to trouble others. When they try to access services, they find it difficult to understand what they have to do to be seen and, when faced with professional questioning, may fail to communicate their symptoms in a manner which can be interpreted correctly6.

There is a danger that older people with learning disabilities who require extra support, investigation or treatment will be neglected by both primary care and secondary care services as each feels baffled and ill-equipped to deal with their complex individual needs. The triple jeopardy of stigma associated with being old, having a life-long mental disorder and, now, new pathology, is a real hazard to well-being and continued survival.

Learning disability is defined by social function rather than IQ and so includes:

  • Reduced ability to understand new or complex information and to learn new skills
  • Reduced ability to cope independently
  • Onset of these disabilities in childhood, with a lasting effect upon development
  • Severe disability equates with need for significant help with daily living
  • People with mild to moderate disability can manage more independently, with support.

    It is estimated that 210,000 people in England have a severe learning disability. Children and adolescents make up 65,000 with 120,000 adults of a working age. Only 25,000 (12 per cent) are older people (sixty years and above). At least 1.2 million people have a mild/moderate learning disability and of these 265,000 (21 per cent) are over sixty years of age.

    Thus an average general practice list of 2,000 patients will include:

  • 40 patients, of all ages, with a learning disability,
  • Eight with severe disability.

    Many older people with learning disability live with family members, either very aged parents or siblings who have carried on the family tradition of care. Others receive care in hostels, residential homes or other sheltered or supported accommodation. They are dependent upon others for support and for help with any health problems which arise.

    Their carers may not be well equipped to identify significant symptoms, nor to access appropriate assessment and interventions from health care agencies. Family carers are often old themselves and may be unwell. Indeed it is not uncommon for grown up children with learning disability to care for their aged parents or older siblings. Families may be reluctant to turn to authorities for help, having struggled alone for decades for fear or shame that their disabled member might be taken into care. People employed to provide care rarely have a sophisticated knowledge of health issues and may respond to new needs simply by giving more care. Implications in practice

    With these considerations in mind, we began a project to review the health of older people with learning disabilities in Wolverhampton, to discover how the realities of life in our service compares with the prospect of stigma and neglect suggested by the literature. We focused on a known group of clients in one of the city's day centres.

    The project aimed to:

  • Review the health needs of the clients
  • Raise awareness amongst all care providers of the health needs of the individual older people
  • Develop partnership working and integration across services to support the highest quality of life for the clients.

    Two nurses undertook a review of the health of each person using the OK Health Check, a readily available tool designed for the purpose7. This provides a comprehensive series of questions (152 items) covering all aspects of health and function divided into 16 domains5 including body measurements, medication, circulation and breathing, urinary, physique and mobility, foot health, oral hygiene, eyesight and hearing, sexuality, skin, mental health and life-style risks. Information to complete the checklist is collected by a combination of physical measurements (height, weight, pulse rate, blood pressure etc.), consultation with the individual with learning disability, questioning of their main informal and professional carers, and extract of data from health and social care records.

    This is a challenging and time consuming exercise, instructive and potentially therapeutic in itself. The present generation of carers may not be privy to the activities and knowledge of their predecessors and records held by different agencies can lack continuity.

    Gender and marital status
    There were 11 men and 11 women involved in the project; none had ever married. Ages ranged from 58 years to 80 years and all were white and British. Eight were living in residential homes. Five still lived within their family home, five were in adult placements and three lived alone with support.

    Physical health checks
    Twelve (55 per cent) had not received a recorded full physical examination by a doctor since childhood. Only six out of the eleven women had received an invitation for breast screening, ten had failed to receive invitations for cervical screening and half of those eligible for flu vaccinations had not received them. Where problems were discovered, they were drawn to the attention of the GP. This resulted in appropriate action within primary care or they were referred on to specialist care.

    Medication

  • Five involved in the project (23 per cent) were on no medications
  • Ten of them (45 per cent) were prescribed 1-2 medications
  • Five (23 per cent) received 3-6 medications
  • Two (9 per cent) were receiving six or more medicines daily
  • Only ten (45 per cent) of them had received a medication review within the last 12 months.

    Mobility
    Mobility problems affected 92 per cent of the group, including difficulties with co-ordination, poor posture and skeletal deformity, pain on movement and limitation of fine and gross motor activity. Only one third of those with such difficulties had been provided with aids and adaptations to assist them and only one had been assessed recently by a physiotherapist. Many of the facilities at the day centre, were unsuitable for people with limited mobility.

    Foot problems
    Problems were identified in 15 of the group with 12 having infections of the toe nail, seven having poor circulation to the feet and others having problems arising from the shape of their feet or condition of the skin.

    Skin
    Skin problems troubled 12. These included uninvestigated cases of scratching to the point where skin integrity was compromised, psoriasis, eczema and pressure sores.

    Circulation and breathing
    Eight attendees had some evidence of oedema, six had pulse rates below 50 beats per minute and six of the 15 who could cope with a measurement of blood pressure were hypertensive. Respiratory rate was raised in three, three complained of breathlessness on exertion and recurrent chest infections troubled six.

    Digestion and elimination
    Five were chronically constipated, it was difficult to achieve appropriate intake of fluids for three and appropriate intake of food for four. Five were in receipt of special diets, including three who were known diabetics. Dental problems were identified in six, though half the group did receive regular dental checks.

    Continence
    Sixteen (73 per cent) reported continence difficulties, such as nocturnal enuresis, urinary frequency or stress incontinence but only four been referred for a formal continence assessment even though their symptoms produced practical difficulties both at the centre and on transport.

    Special senses
    Impairments of vision affected 18 and 14 had prescriptions for spectacles but only half were wearing them. Only half of the group received a regular eye test, though this was made available at the day centre by an annual visit from an ophthalmic service. Thirteen had impaired hearing, but only two had received a hearing test previously.

    Epilepsy
    When epilepsy was examined it was found that three (14 per cent) of the group suffered from it, but regular monitoring and accurate recording of the condition was evident for only two.

    Mental health
    Fourteen demonstrated one or more mental health problems beyond their learning disability. Four, including all three with Down's Syndrome, had evidence of dementia. Four showed repetitive self injury behaviour, two demonstrated obsessional rituals, two were irritable and explosive verbally and behaviourally and two were abnormally anxious. No psychotic symptoms nor evidence of major depression were identified.

    Life style risks
    Only one client admitted to be a regular smoker but 18 (82 per cent) were involved in no regular exercise. Seven per cent of the group were outside the healthy range for the Body Mass Index and 30 per cent were obese, 35 per cent less spectacularly overweight and 10 per cent were underweight.

    Our findings underline the vulnerability of older people with learning disability. In practice even these privileged individuals already well known to services, had many unrecognized and unmet health care needs. It is probable that others with similar impairments remain hidden in alternative modes of care. Their problems will surface when a crisis occurs either in their own health or in that of their carers.

    It is important to take to heart the messages of Valuing People and the NSF for Older People and to take positive steps to identify this small special cohort of survivors and to make sure they don't miss out on the possibilities for improved health in their later years. Such action will benefit them individually and those who care for them. They represent a new challenge and one which will become more significant as numbers increase. The characteristics and nature of their circumstances and difficulties have been identified. These are likely to endure but be modified over the coming years. Whilst the determination of parents is unlikely to fade, the commitment of brothers and sisters in the future may not be of the same order.

    Our study encountered no individuals from ethnic minority families, yet learning disability is more common in some groups and this is likely to impact on services8. But better awareness amongst Social Service and independent sector carers and greater involvement of health care staff could and should transform the picture.

    There is ample opportunity to improve the life styles of people with learning disability to improve mobility, reduce obesity and risks of cardiovascular illness. Early identification of other disorders will reduce suffering and complications. To achieve these benefits, localities must organise collaborative projects to identify the clientele. This can be done initially through Social Service registers, supplemented by general practice and other sources able to discover or remember people who have been lost to the main providers.

    An approach such as that described from Wolverhampton may be attractive and feasible in other settings. We have been pleased with the outcome of this pilot exercise. For each individual reviewed, the data in the health check has been used to form an individual Health Action Plan (HAP), as recommended in Valuing People. Each HAP identified individual health needs and specified people responsible for actions to improve health.

    The collective data from the group has been used to inform recommendations for service developments. This has led to an improvement in staffing and facilities at the day centre, additional training for staff and closer collaboration between health and social care staff. We have begun to liaise with the relevant health agencies to investigate why people have not received services such as breast screening. Also actions are being taken to ensure that the needs of older people with learning disability are more widely understood and special precautions are to be taken to ensure their inclusion in screening programmes from now on.

    Dr Michael Clark is a research and development co-ordinator at Wolverhampton City Primary Care Trust, Diane Webb and Lynda Willetts are community learning disability nurses at Wolverhampton Health Care NHS Trust and Professor David Jolley is medical director of Wolverhampton Health Care NHS Trust

    References

    1 Department of Health. The National Service Framework for Mental Illness, 1999; HMSO, London

    2 Department of Health.The National Service Framework for Older People, 2001; HMSO, London

    3 Department of Health Valuing People. A new strategy for Learning Disability in the 21st century, 2001; HMSO, London

    4 Royal College of Psychiatrists www.rcpsych.ac.uk/campaigns/cminds Date last accessed: September 2002

    5 Moss S. Goldberg D, Patel P, Wilkin D. Physical morbidity in older people with moderate, severe and profound mental handicap and its relationship to psychiatric morbidity. Social Psychiatry and Psychiatric Epidemiology, 1993; 28: 32-9

    6. Howells G. Are the medical needs of mentally handicapped adults being met? Journal of the Royal College of General Practitioners, 1986; 36: 449-553

    7.Matthews DR. The OK Health Check,1998, Second Edition. Preston Central. Fairfield Publications

    8. Ahmed W. Learning difficulties and ethnicity, 2001; Centre for Research in Primary Care, University of Leeds

    16.Curran S, Wattis JPW, Lynch S. The Practical Management of Depression in Older People. 2001; Arnold, London

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