Healthcare for people with learning disabilities
Dr Peter Hall MBBS, MRCPI, DGM
A report from a doctor who has specialised in physical healthcare for people with learning disability for over 30 years, and in health rights over 18 years
Physical healthcare doctor, Hertfordshire Partnership NHS Trust, Chair, Doctors for Human Rights
Summary points • people with a learning disability suffer from more physical and mental disorders, and are at risk of dying younger, than other citizens. • their illnesses are often importantly more difficult to diagnose, investigate and treat because of their diminished understanding of health issues • they are at significantly greater risk of treatment side effects because they suffer from more disorders than others • regular screening is necessary to monitor their health • a carer’s health advocacy skills are often of paramount importance • specialist community physicians (analogous to learning disability psychiatrists and to community paediatricians) are needed to continuously raise standards of care
Putting healthcare into context
health services that meet all their health needs. A survey of the views of 1800 people with a learning disability said health was the third most consequential factor in their lives,only preceded by close contact with relatives and by autonomy.
Some people with learning disabilities live relatively independently, but many need support to enjoy fulfilled lives. People with severe learning disabilities, or with both a learning disability and a physical disability, may need intensive support, 24 hours a day. One of the most important aspects of that support involves realising equitable access to
If the component parts of support are conceptualised as a series of cogs - then each individual requires a unique combination (number, 1
Healthcare for people with learning disabilities size, shape), all of which must mesh harmoniously. Medical care for anyone with a disability has two prime roles; preserving quality of life and longevity (a long life), and facilitating social inclusion. If the medical cog, often one of the largest because of the increased prevalence of physical and mental disorders in people with a learning disability, fails to mesh, then the entire support ‘machinery’ may malfunction. Good medical care is about maximising the capacity to enjoy life to the full.
general population (Hollins et al.,1998); McGuigan et al.,1995), and people with Down’s syndrome have a shorter life expectancy than people with learning disabilities generally (Puri et al.,1995). In addition to their being burdened with more illnesses, their medical management can be rendered more difficult, to the point of representing a significantly increased risk, if they are unable to interpret a symptom for what it is, or describe it, or cooperate over examination, investigation or treatment (Howells G. 1997) - see assessment report Appendix D
The role of primary care is to provide a comprehensive ‘non-specialist’ medical service near to where people live, and comprises a mix of reactive and preventative care. A large part of general practice involves responding to people who develop symptoms that may require some form of examination, and sometimes investigations and treatment. Preventative medical care is a less well appreciated but essential element that forms a cardinal plank in the health strategy for the whole population. Preventative care may take the form of an investigation (e.g. cervical screening) or treatment (e.g. infant immunisation programmes) or health education (e.g. information on weight control).
People with learning disabilities can experience ‘diagnostic overshadowing’, that is reports of physical ill health being viewed as part of the mental health problem or learning disability – and so not investigated or treated. The opposite- ‘investigation overkill’- also exists, though more rarely [see box 4] Increased prevalence of medical disorders • Specific long-standing illness or disability 61% v 31% gen population (Emerson et al, 2005; Summerfield et al, 2005)
Specific health problems in people with a learning disability
• Epilepsy 22% (v 0.75% in gen pop) (Welsh Office, 1996; Chadwick, 1994)
The majority of people with a learning disability have always lived in the community and form over 2% of the population. Most have a mild to moderate intellectual disability, while 210,000 have severe/profound intellectual disability (Valuing People, 2001). Not only do they develop the same illnesses as everyone else, but many have much higher prevalence rates of chronic (long term) medical disorders – both physical and psychiatric [see box 1]. They also experience access barriers in using health services (NHS Health Scotland, 2004).
• Mental disorder 50% (v 25% in gen pop) [Mansell,1993] - including 3% with a psychosis (v 1%) (Doody et al 1998) • Visual impairment 8.5 to 200 x that in gen pop: 40% have a hearing impairment (Carvill, 2001) • More likely to be underweight or obese than gen pop (Messent et al, 1998, Robertson et al, 2000 • Respiratory disease 19.8% (v 15.5 % in gen pop) and is leading cause of death at 46%-52% (v 1517%) & Jancar, 1983; Hollins et al., 1998; Puri et al., 1995)
Box 1
People with learning disabilities have an increased risk of early death compared to the 2
Healthcare for people with learning disabilities Difficulties evaluating responses to treatment are compounded by problems with assessing potential side effects. Moreover, it is likely that as the medical management of illnesses will become more complex as people live longer – maintaining an optimum health status continuously will become an ever greater challenge.
2 had four conditions 5 had three conditions
Only 1 was entirely well
6% 3% 16%
Studies have shown that despite their higher prevalence rates of mental and physical disorder, and although people with learning disabilities visit their GP with similar frequency to the general population, they are less likely to receive regular health checks (Kerr et al., 1996b; Welsh Office, 1995; Whitfield et al., 1996), including people with Down’s syndrome (Piachaud et al., 1998).
6 had two conditions
18 had one condition
19%
56%
chart 1
In 1986 Dr Gwyn Howells, a general practitioner in Swansea, was the first to publish evidence demonstrating how inadequately the health problems of people with a learning disability are dealt with (Howells G, 1986). A number of subsequent studies confirmed high levels of unmet physical and mental health needs (Barr et al., 1999; McGrother et al., 1996; Wilson & Haire, 1990). In 1993 an audit of primary medical care for people with moderate and severe learning disabilities living in Harrow was carried out (Hall P, 1993). The findings were measured against a standard set in 1990 by the Royal College of General Practitioners, which recommended a comprehensive annual medical examination (RCGP, 1990). Only one of the 42 people examined was found to be completely physically well and 31 had 53 previously unmanaged or unrecognised medical conditions [-see chart 1]
opportunistic assessments during unplanned surgery visits do not. Regular medical examinations The term screening is used to describe an investigation to discover (so as to treat and hopefully cure) a disorder before it causes any symptoms, and is performed on groups of The following institutions have recommend an annual medical examination • Horizon NHS Trust 1970 • Royal College of General Practitioners 1990 • Welsh Health Planning Forum 1992 • Mental Health Foundation 1996 • Mencap 1996 • Department of Health (Signposts etc) 1998
Importantly, 8 of the 12 patients with longevity threatening unmanaged disorders had been seen three or more times in the previous year by their GP, consistent with the view that systematised annual medical examinations would identify unrecognised disorders where
• Department of Health (Valuing people) 2001 • Department of Health (Min Standards) 2002 • Disability Rights Commission (2006) Box 2 3
Healthcare for people with learning disabilities Specialist healthcare service
It is important that the annual medical examination, as recommended by a number of authoritative organisations (see box 2), is recognised as a form of screening, so as to properly contextualise it within the health strategy for the nation. Some prefer the vaguer title ‘health checks’ but, although a number of the disorders identified might already be causing symptoms, they would have remained unrecognised and therefore untreated had the examination not taken place - thus remaining true to the ethical principles justifying screening [see box 3]
Herts Partnership NHS Trust has for six years provided a weekly physical healthcare specialist service to three London boroughs, staffed by a doctor with 30 years experience in the speciality. An anonymised report of a recent case illustrates the complexities and challenges often faced by patients, carers and health professionals. The report is not only designed to inform doctors but also other learning disability team members, carers/parents and patients See appendix D
The health benefit of regular screening has more recently been demonstrated a number of times (Cassidy et al., 2002; Martin et al., 1997) and Kerr et al 2005 found that of 181 people with learning disabilities in Wales who received a health check, half had newly identified health needs and 9% had serious health problems. Subsequent checks over a year later identified further new health needs among 68, with serious problems in 11%.
people who have relatively high prevalence rates of the disorder e.g. mammography screening in woman between the age of 47 and 73 seeks to identify breast cancer early enough to cure it. Some causes of learning disability are associated with increased prevalence rates of specific disorders, such as hypothyroidism (underactive thyroid gland) in people with Down’s syndrome. These raised prevalence rates make it worth screening people with certain syndromes for the illnesses that occur more frequently. Thus a regular thyroid function can detect hypothyroidism in people with Downs syndrome before it causes symptoms, and can will help prevent complications such as coronary heart disease. A list of other examples is given below: • Prader-Willi syndrome: shortsightedness, dia-
Health screening for people with learning disabilities has been incentivised in Wales but not England. The Disability Rights Commission, having satisfied themselves that screening is an effective way of picking up physical health problems, has recommended incentivisation in England. A comprehensive annual examination protocol has been in used at Herts Partnership NHS Trust for over 10 years [see appendix C]
betes, hypogonadism (reduced oestrogen and testosterone secretion) and delayed puberty, obesity, •osteoporosis, sleep apnoea
Ethical principles justifying screening • But for the investigation an illness would have remained undiagnosed
• Downs syndrome: visual and hearing impairment (multifactorial), hypothyroidism, Alzheimers dementia, congenital heart defects, sleep apnoea
• The investigation is reliable
• Tuberous sclerosis: retinal tumours, cerebral tumours, and kidney and lung hamartomas
• The investigation is not disproportionately invasive or expensive
• Neurofibromatosis: endocrine abnormalities, tumours susceptible to malignant change
• Any illness diagnosed can be effectively treated
• Cerebral palsy: constipation, oesophagitis, • Fragile X syndrome: mitral valve prolapse
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Box 3
Healthcare for people with learning disabilities Institutional Discrimination
Carers role in healthcare
Mencap believes there is widespread ignorance and indifference throughout healthcare services towards people with a learning disability, and their families and carers, that leads to unnecessary deaths and suffering. In its recent report on the deaths of six people it claims institutional discrimination exists within the NHS (Mencap, 2007).
Many carers of people with a learning disability have only a limited understanding of their clients’ or relatives’ medical needs and have never been trained to recognize physical or mental illnesses, or to provide what sometimes amounts to nursing care (Meehan 1, 1995). Nor can they be fully effective advocates until they are empowered with the necessary medical knowledge to enable them negotiate a health system that can sometimes seem intimidating and obstructive, to the point of hindering proper access to both primary and secondary (general hospital based) medical care (Smith B 1996). Some general practitioners rely on carers to take responsibility for anticipating and identifying illnesses when the most appropriate person for that role within the multidisciplinary care network supporting the client may be the doctors themselves (Howells G 1996).
There is little doubt discrimination exists to the extent that services are largely resourced to deal with patients who are informed on health
Example of investigation overkill A middle aged women with severe learning disability, whose long term phenothiazine for agitated restless behaviour was changed to an atypical antipsychotic, soon began pacing the ward day and night, lost weight, refused food and developed sores on newly oedematous feet. Because of mild anaemia and raised ESR, she underwent most endoscopies, imaging and blood tests known to (wo)man. No organic diagnosis was achieved and gradually over months her behaviour ameliorated, and her health returned to its former state
Issues of Consent People with learning disability who are unable make informed decisions that take account of all relevant facts regarding an actual or potential threat to their health, risk unnecessary suffering because they lack what is known as mental capacity. In the past clinicians may have been reluctant to consider and provide the full range of treatment options for people with learning disabilities because of perceived difficulty obtaining informed consent, or for fear of litigation (Howells, 1997; Cumella and Martin 2000). However it may be negligent to withhold treatment because the patient cannot give consent (Department of Health, 1998; Tännsjö, 1999).
Box 4
matters and able to personally engage collaboratively and cooperatively with services. The increased equipment requirements e.g. hoists in clinics, and staffing resources, eg nursing on the wards, and extra time, investigations, and follow up needed to ensure a diagnosis and treatment is correct - stresses a system that is too often inflexible. There is also little doubt that some health professionals harbour discriminatory perceptions (see ‘health rights‘: human rights law in appendix A : & ‘three examples‘ in appendix B)
Evaluation may be complex and difficult. Risks of suffering symptoms (whether psychological or physical) from a procedure have to be
5
Healthcare for people with learning disabilities balanced against the chances of the procedure identifying/preventing/curing a condition, and against the seriousness of the condition. Often there are no black and white answers - rather shades of grey. Thus for example, as there is an enhanced chance someone with Downs syndrome will develop hypothyroidism at some stage, and if that person resists blood tests, it would, in the absence of specific symptoms/signs of hypothyroidism, seem reasonable to reduce the frequency of routine blood testing from annually to every 3 -5 years (Loudon et al., 1985; Rooney & Walsh, 1997). Long standing untreated hypothyroidism will contribute to reduced longevity and increased morbidity so every 5 years may be unacceptably long.
parties. The Mental Capacity Act 2005, which comes into force this October, will henceforce govern responsibility regarding issues of consent for those lacking capacity. Hopefully the new Act, in setting out a new legal framework of how to act and make decisions on behalf of people who lack capacity, will prove to be an instrument that carers and health providers can confidently apply in a way that facilitates prompt provision of good quality healthcare. Practical problems in healthcare There has been concern that people with learning disability are not taking part in routine population screening programmes. For instance women with learning disabilities are much less likely to undergo cervical smear tests than the general population (19% vs 77%; Djuretic et al., 1999; 24% vs 82%; Pearson et al., 1998). In 1997 Horizon NHS Trust, in collaboration with Hertfordshire Health Promotion, and the Women's Nationwide Cancer Control Campaign, demonstrated how cervical screening numbers can be optimised using a focused initiative (Hall P et al, 1999)
The uncommon, but at times unavoidable use of force to carry out necessary procedures, such as phlebotomy or nail cutting, on people with learning disabilities who resist, creates understandable emotional responses in carers. Many carers interpret the absence of specific guidelines, analogous for instance to the 2002 Joint DfES and DH guidance on the use of restrictive physical interventions in challenging behaviour, as indicating the use of force to be unethical or illegal - to the extent it should never be used to carry out non emergency albeit necessary procedures. The lack of clarity over the issue has risked a form of de facto discrimination - so it is the responsibility of carers (all those involved in each patient’s care, including health professionals) to collaborate over evaluating information and taking whatever action reflects the individual’s best interests.
The lessons learned from this programme were that: the numbers screened can be optimised by a focused initiative which includes education of clients and of carers to support the programme; the procedure should only be carried out by women staff to avoid embarrassment; it is not possible to predict who has had sexual experience; and the doctor taking the smears must be skilled and flexible enough to be able to take smears in any position offered; and that it is likely that the experience gained in this initiative would result in better success rates next time.
Hitherto the issue of consent for those lacking capacity has been deceptively simple, despite apparently often causing confusion. The responsible carer or health professional had to ensure anyone lacking capacity receives whatever treatment was in his/her best interests, having consulted with relevant involved
Health rights The NHS acknowledged the importance of health rights earlier this year when it published
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Healthcare for people with learning disabilities the policy document Human Rights in Healthcare – A Framework for Local Action. The main focus of the document is on health rights as interpreted through the Human Rights Act generic legislation which enjoys surrogate health rights status through ‘knights move’ case law. The report does acknowledge in passing the government’s obligation to respect other binding international laws, including the United Nations International Covenant on Economic Social and Cultural Rights (ICESCR), the Convention on the Rights of a Child and the Convention on the Elimination of All Forms of Discrimination Against Women (see appendix A).
disabilities and this is currently being ‘road tested’ ”. However, as the first line of the executive summary does (correctly) declaim “Neglecting people’s human rights is bad for their health. In contrast, the protection and promotion of their human rights is [...] good for individuals’ health” In 2002 Doctors for Human Rights (under its former name) submitted a shadow report to the Committee which oversees the UK’s observation of the ICESCR every 5 years, (Physicians for Human Rights UK, 2002) criticising healthcare for people with learning disability, amongst others, as being discriminatory. The UN committee’s concluding observations expressed concern at "de facto discrimination in relation to some marginalised and vulnerable groups" and urged the UK government to ensure that human rights education curricula and training programmes give adequate attention to the right to the highest attainable standard of health. (United Nations, 2002)
Given the government’s previously negative approach to health rights, a sceptic might be forgiven for concluding the primary reason for publishing Human Rights in Healthcare is to forewarn health authorities of the potential for litigation under the Human Rights Act. The failure of consecutive UK governments to incorporate international health laws, particularly the Magna Carta of health rights - Article 12 of the UN International Covenant on Economic, Social and Cultural Rights - into domestic law so as to render it justiciable has been condemned (Hall P, 2007).
In 2002 the US Institute of Medicine (Smedley Bet al, 2002) in its paper on discrimination in healthcare, quoted research showing that, even well meaning doctors who are not overtly biased or prejudiced, have unconscious negative attitudes that stigmatise minority ethnic and racial groups. A subsequent study by the US Physicians for Human Rights confirmed ”evidence of racial and ethnic disparities in medical care occurring across the full spectrum of disease categories and medical and surgical procedures.” (PHR, 2003)
Interestingly, one of the five NHS Trusts that worked in conjunction with the British Institute of Human Rights to produce the Framework, by developing and applying human rights based approaches in their organisations, was Mersey Care NHS Trust which provides specialist mental health and learning disability services for the people of Sefton, Liverpool and Kirkby. Disappointingly however, although the Trust waxed lyrical about the advantages a human rights approach might be expected to delivery on services, the only information available at publication was that a “new and innovative human rights tool has been developed for use with people with learning
In 2005 the UN Special Rapporteur on the Right to the Highest Attainable Standard of Health‘s report to the UN Commission on Human Rights, was devoted to “a group that is among the most neglected, marginalized and vulnerable: persons with mental disabilities.” (Hunt P, 2005), Twenty pages of his comprehensive and fully referenced address enumer-7
Healthcare for people with learning disabilities ated, amongst other information, the international human rights legal instruments that guarantee people with learning disabilities their equal right to the highest attainable standard of health
disability living in the community, with its complex and interrelated mix of family, social and medical problems, has always appeared a quintessentially general practice responsibility. However the burden of healthcare responsibilities within primary care has greatly increased in recent years and GPs are under great pressure from competing demands upon their time and expertise. Whilst most GPs agree that they should meet the medical needs of people with learning disabilities as part of general medical services, fewer agree that they should take an active role, such as providing regular heath checks (Bond et al., 1997; Ineichen & Russell, 1987; Kerr et al., 1996a; Stein, 2000). Nor are GPs routinely acting as the co-ordinator of health care for people with learning disabilities, and collaboration between GPs, primary health care teams and specialist services for people with learning disabilities has been generally poor (Thornton, 1999).
What of the future There has for some years been a surge of interest in establishing how best to delivery physical healthcare to people with a learning disability. The Department of Health and influential national organisations have campaigned for improved standards. Many local authorities have developed a tranche of new services help ensure that the healthcare needs of people with a learning disability are met, such as appointing dedicated health liaison nurses to facilitate access to primary and secondary health care. The introduction of the new Disability Equality Duty in December 2006 provides an important lever for ensuring the prioritisation of health inequalities at the local level.
Furthermore because of the small number on people with learning disability on each GP’s list, few develop a significant expertise in their medical care. Half surveyed in one study lacked confidence in supervising their medical management which can often seem intimidating and prove problematic (Plant 1997).
Despite the broad consensus supporting annual medical examinations there is no agreement as to what model is best. In the absence of national guidelines many models exist, such as nurse led, general practitioner led, or specialist doctor led screening, but its efficacy may depend more on the enthusiasm and diligence with which service is provided rather than the type of practitioner. (see Herts Partnership NHS Trust comprehensive examination six page protocol is shown in Appendix C)
Two new initiatives Two initiatives would improve healthcare delivery for this medically vulnerable group of people. Firstly, more widespread adoption of the education of medical students about learning disability along the lines within the curriculum at St George’s Hospital Medical School, where the subject is embedded at different times throughout the undergraduate programme.
So far only limited implementation of regular health screening has taken place despite key stakeholders agreement over their importance. Progress on implementation is slow, particularly in England, due to negotiations on renewing the GP contract. Progress has been more positive in Wales where Learning Disability Health Checks were introduced as Directed Enhanced Services in the GP contract
Secondly but more importantly because it would have a more immediate effect on primary and secondary care for people with learning disability, is the creation of a new post of
The medical care of people with learning 8
Healthcare for people with learning disabilities specialist in physical healthcare of people with learning disability, analogous with the national system of consultant psychiatrists in learning disability and community paediatricians, has been mooted for some years. (Cumella S, 1992, Beange H, 1990).
professionals and carers; the carrying out research; and personal supervision of the healthcare provision of the very difficult to manage group of people with complex health problems, with or without challenging behaviour ,with which generic health services have most trouble dealing.
Its creation would at one signal how seriously the government views unsatisfactory current service achievements, and its determination to change the culture. Through the adoption of a leadership role that displays a positive ‘can-do’ approach to the provision of primary and secondary healthcare for people with learning disability, the post could transform the perceptions of healthcare workers as a whole, and with it healthcare for people with learning disabilities.
People with learning disability live their whole lives under the same increased risk of illness, yet, unlike children and the elderly - analogous populations with similarly albeit less prolonged periods of increased risk - their physical healthcare have never been considered deserving of specialist care. In fact many professional carers of people with learning disability would prefer generic services were uprated instead of the adoption of any specialist status so as to avoid exceptionalism, but that understandable consideration flies in the face of the evidence that specialism in medicine raises standards.
The job description would include the provision of education for patients, health
Barr, O., Gilgunn, J., Kane, T. & Moore, G. (1999). Health screening for people with learning disabilities by a community learning disability service in Northern Ireland Journal of Advanced Nursing, 29, 1482-1491
general practitioners and primary health care teams. Journal of Learning Disabilities, 6, 12-136 Center J, H Beage, A McElduff (1998). People with mental retardation have an increased prevalence of osteoporosis: a population study. American journal of mental retardation, vol 103, No 1, 19-28
Beange, H. & Bauman, A. (1990) Caring for the developmentally disabled in the community. Australian Family Physician, 19, 1558–1563
Chadwick, D. (1994). Epilepsy. Journal of Neurology, Neurosurgery, and Psychiatry, 57, 264-277.
Bond, L., Kerr, M., Dunstan, F. & Thapar, A. (1997). Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. Journal of Intellectual Disability Research, 41, 391-400
Chambers R, Milsom G, Evans N, Lucking A, Campbell I (1998) The primary care workload and prescribing cost costs associated with patients discharged from long-stay care to the community. British Journal of Learning Disabilities. 26, 1, 9-12
Carter, G. & Jancar, J. (1983). Mortality in the mentally handicapped: a 50 year survey at the Stoke Park group of hospitals (1930-1980). Journal of Mental Deficiency Research, 27, 143-156
Cumella S, Corbett J, Clarke D, Smith B (1992) Primary Healthcare for People with a Learning Disability. Mental Handicap. 20, Dec. 123-25
Carvill, S. (2001). Review: Sensory impairments, intellectual disability and psychiatry. Journal of Intellectual Disability Research, 45, 467-483.
Cumella S, Martin D. Secondary healthcare for people with a learning disability. 2000. London, Department of Health.
Cassidy, G., Martin, D.M., Martin, G.H.B. & Roy, A. (2002). Health checks for people with learning disabilities: community learning disability teams working with
Department of Health. (1997) The New NHS: Modern, Dependable. London: HMSO. 9
Healthcare for people with learning disabilities Department of Health. (1998) Signposts for success in commissioning and providing health services for people with learning disabilities.
able standard of physical and mental health to the Commission on Human Rights. E/CN.4/2005/51. United Nations
Department of Health. (2001) Valuing people. London: HMSO
Ineichen, B. & Russell, O. (1987). Mental handicap: the general practitioners’ contribution to community care. Uptake, 15, 507-514.
Djuretic, T., Laing-Morton, T., Guy, M. & Gill, M. (1999). Concerted effort is needed to ensure these women use preventive services. British Medical Journal, 318, 536
Kerr M, Dunstan F, Thepar A. (1996a) Attitudes of general practitioners to caring for people learning disability. British Journal of General Practice. 46: 92-94.
Doody, G.A., Johnstone, E.C., Sanderson, T.L., Cunningham-Owens, D.G. & Muir, W.J. (1998). ‘Pfropfschizophrenie’ revisited: schizophrenia in people with mild learning disability. British Journal of Psychiatry, 173, 145-153.
Kerr, M.P., Richards, D. & Glover, G. (1996b). Primary care for people with a learning disability – a Group Practice survey. Journal of Applied Research in Intellectual Disability, 9, 347-352 Kerr M, Felce D and Felce J (2005) Equal treatment: closing the gap. Final report from the Welsh Centre for Learning Disabilities. www.leeds.ac.uk/disability-studies/archiveuk/kerr/Wales _learning_disability_study.pdf
Emmerson E, Malam S, Davies I, Adults with learning disabilities in England 2003/4. Health and Social Care Centre 2005 Evans G, Todd S, Beyer S, Felce D, Perry J, (1994). Assessing the impact of of the All-
Langham J, Russell O, Whitfied M (1993) Community Care and the General Practitioner: Primary Health Care for People with a learning disability. Bristol: Norah Fry Research Centre.
Wales Mental Handicap Strategy: A survey of four districts. Journal of Intellectual Disability Research 38, 109-33.
Louden MM, Day RE,& Duke EMC (1985) Thyroid dysfunction in Down’s syndrome. Archives of Disease in Childhood. 60, 1149-1151
Hall P, Regan A, Young J. (1993) Audit of primary medical care of people with learning disability living in Harrow . Horizon NHS Trust (unpublished)
Mant D (1994), Editorial: Health checks - time to check out?. British Journal of General Practice 44 (379) 51-52
Hall P, Ward E, (1999). Numbers screened can be optimised by using a focused initiative, BMJ 1999;318:536
Mansell J (1993) Services for people with learning disabilities, challenging behaviour or mental health needs. Project group report.
Hall P, (2007). Health care for refused asylum seekers in the UK. The Lancet. 370 p466-467 Health care for the developmentally disabled - is it necessary? (1989) In Fraser W (ed) Key issues in mental retardation. London: Routledge
McGrother, C.W., Hauck, A., Bhaumik, S., Thorp, C. & Taub, N. (1996). Community care for adults with learning disability and their carers: needs and outcomes from the Leicestershire register. Journal of Intellectual Disability Research, 40, 183-190
Hollins, S., Attard, M.T., von Fraunhofer, N. & Sedgwick, P. (1998). Mortality in people with learning disability: risks, causes, and death certification findings in London. Developmental Medicine & Child Neurology, 40, 50-56.
McGuigan, S.M., Hollins, S. & Attard, M. (1995). Agespecific standardized mortality rates in people with learning disability. Journal of Intellectual Disability Research, 39, 527-531
Howells G, (1986). Are the medical needs of mentally handicapped adults being met? Journal of the Royal College of General Practitioners 36, 449-53
Meehan S, Moore G, Barr O. (1995). Specialist services for people with learning disabilities. Nursing Times 91 (13), 33-5
Howells G. (1996) Situations vacant: doctors required to provide care for people with learning disability. British Journal of General Practice. February 1996, 59-60
Mencap. (2007) Death by indifference. London http://www.mencap.org.uk/html/campaigns/deathbyindif ference/reports.asp
Howells G. A general practice perspective. In: O'Hara J, Sperlinger A, editors. Adults with learning disabilities: A practical approach for health professionals. 1997
Messent PR, Cooke CB, (1998) Physical activity, excercise and health. British Journal of Learning Disabilities, 26, 17-22
Hunt P. (2005) Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attain
NHS Health Scotland. Health needs assessment report. 10
Healthcare for people with learning disabilities People with learning disabilities in Scotland. Glasgow: NHS Health Scotland, 2004.
Smith B, Wun W, Cumella S. (1996) Training staff caring for people with learning disability. British Journal of Learning Disabilities. 24, 20-5
Pearson V, Davis C, Ruoff C, Dyer J. One quarter of women with learning disability in Exeter have cervical screening. BMJ Pearson V; 316: 1979. (June 27th)
Stein, K. (2000). Caring for people with learning disability: a survey of general practitioners’ attitudes in Southampton and South-West Hampshire. British Journal of Learning Disabilities, 28, 9-15
PHR-UK. Response to the UK government's fourth report under the International Covenant on Economic, Social and Cultural Rights. St Albans: PHR-UK, 2002.
Summerfield, C, & Gill, B. (2005). Social Trends 35. London: National Statistics.
Piachaud, J. & Rohde, J. (1998). Screening for breast cancer is necessary in patients with learning disability. British Medical Journal, 316, 1979
Tännsjö T. Informal coercion in the physical care of patients suffering from senile dementia or mental retardation. Nursing Ethics 1999; 6(4):327-336
Plant M. (1997). The provision of primary medical care for adults with learning disabilities. The British Journal of Development Disabilities 43 (1) No 84, 75-8.
Thornton, C. (1999). Effective health care for people with learning disabilities: a formal carers’ perspective. Journal of Psychiatric & Mental Health Nursing, 6, 383-
Puri, B.K., Lekh, S.K., Langa, A., Zaman, R. & Singh, I. (1995). Mortality in a hospitalized mentally handicapped population: a 10-year survey. Journal of Intellectual Disability Research, 39, 442-446.
United Nations. Concluding observations of the Committee on Economic, Social and Cultural Rights: United Kingdom. June 5, 2002: http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/619d3c7868 01b.
Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, Hallam A. Lifestyle related risk factors for poor health in residential settings for people with intelletctual disabilities. Journal of Intellectual Disability Research, 44, 666-676
Wageman A et al. (1998. Osteoporosis and intellectual disability: is there any relation? Journal of intellectual disability research. Vol 42, Part 5 pp 370-374
Rooney, S. & Walsh, E. (1997). Prevalence of abnormal thyroid function tests in a Down’s syndrome population. International Journal of Medical Science, 166, 80-82
Welsh Office (1995). Welsh Health Survey, 1995. Cardiff: Welsh Office Welsh Office (1996). Welsh Health Survey, 1996. Cardiff: Welsh Office
Royal College of General Practitioners working party. Primary care for people with a mental handicap. Occasional paper 47. (1990) London: RCGP
Welsh health planning forum. Protocol for investment in health gain - mental handicap (learning disabilities). (1992) Cardiff: National Health Service Directorate.
Seidell J, (1998) Effects of obesity. Medicine 1998 Nutrition. 26: 11, 4-8
Wilson D, Haire A (1990). Health screening for people with mental handicap living in the community. British Medical Journal 301, 1379-80
Singh P (1997) Prescription for change. Mencap. Smedley BD, Stith AY, Nelson AR. Unequal treatment: confronting racial and ethnic disparities in health care. Washington: National Academy Press, 2002
Whitfield, M.L., Langan, J. & Russell, O. (1996). Assessing general practitioners’care of adult patients with learning disability: case control study. Quality in Health Care, 5, 31-35.
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Healthcare for people with learning disabilities Appendix A
Human rights law promoting health rights
grey indicates non binding international aspirational declarations or targets WHO in its constitution Universal Declaration of Human Rights
1977, World Health Assembly "Health for All" by the year 2000 1978, the Declaration of Alma-Ata further linked the "Health for All" goal with rectifying inequalities in health status
The European Social Charter
International Covenant on Economic, social and Cultural Rights Article 12
The right to the highest attainable highest attainable
Disability Discrimination Act Human Rights Act Disability Equality Duty
red indicates binding international law
Article 12 Article 24 Convention on the Rights of the Child
blue indicates legally enforcable domestic law
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Convention on the Elimination of All Forms of Discrimination Against Women
Healthcare for people with learning disabilities Appendix B
Three examples of discriminatory medical practice
1980’s (arrogance)
Mr. RA was 24 when he died of a fulminating pneumonia. He had profound learning disability due to foetal toxoplasmosis and hydrocephalus. He was totally dependent with tetraparesis (weakness of whole body), blindness and epilepsy. His mental functioning was that of a 9 month child and he had grown to be the size of a 5 year old but with a particularly large head. He had relationships with individual carers and teachers and responded to them by smiling and enjoying their attention but he whimpered at other times for no obvious reason Shortly before his last illness he spent 4 weeks in the local hospital’s paediatric ward with an undiagnosed pyrexial illness. Within a week of returning he developed fulminant pneumonia overnight. The local hospital’s paediatric registrar, who knew him well, refused to admit his other than for conservative treatment i.e. she specifically said she would withhold parenteral (injected) antibiotics. An admission to another hospital was promptly arranged, where he died despite parenteral treatment within hours of admission. The short delay in admission due to arranging an alternative hospital is unlikely to have influenced the outcome
Comment: The junior doctor [who always sounded very competent and conscientious during communications over Mr. RA’s earlier illness] knew him well. She unilaterally decided he would be denied potentially life saving treatment by choosing to withold minimally invasive therapy based upon her perception of the quality of his life when he had been an inpatient with another illness. Firstly, judgments made when someone with learning disability is below par with an illness and separated from familiar people and environments, are inevitably misleading, particularly in terms of assessing their quality of life. Secondly there must have been many hundreds of carers who had nursed or cared for Mr. RA over his 24 year life. They had assiduously, day in day out, communicated, clothed, washed, toileted, fed him perhaps loved him. Many dozens still had an active relationship with him when he died. Each had an investment in his existence, yet none were considered worthy of participation in the decision to withold treatment and allow him die. Lastly, there are enough variations in the different philosophies on life to ensure there are few certainties sufficiently absolute to allow any single person the power to withhold the opportunity to live from anyone who does not suffer from an imminently fatal disease.
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Healthcare for people with learning disabilities
1990’s (partonising)
Appendix B Mr. X was a 54 year old in patient at a long stay residential leading disability hospital. He had chronic schizophrenia that left him with a low level of mental functioning, and indecisive. He had been married and had two children. He was diagnosed as having aortic stenosis after a heart murmur was detected at routine annual physical examination. His cardiac status was fully Appendix B (ii) evaluated at the local general hospital and he was appropriately referred to a cardiac surgeon at a tertiary referral hospital, for aortic valve replacement. It had been concluded by the learning disability team who knew him that he could and would cooperate over the operation but because of his indecisiveness and because symptom onset is insidious, it was not possible to assess if he might be experiencing early symptoms of a gradual decrease in B2 exercise tolerance which put him at risk of sudden death due to an abnormal rhythm. The surgeon said he did not want to put him through the operation at that stage because of his mental condition and decided to review him one year later. Shortly before his 12 month appointment I wrote asking the surgeon to approach the decision to monitor or operate on Mr. X as objectively as he would any other patient. A week before his appointment Mr. X was found dead on the path that led through a wood adjacent to the group home where he had been relocated
Comment: Because of Mr. X’s psychosis induced indecisiveness he was did not have the capacity to give informed consent/ refusal. Patronising people with mental disorders can be bad for their health, however well intentioned. Decisions about appropriateness of treatment should be based upon their best interests, and take account of the opinions of carers and family who know the patient well enough to contribute to properly informed decision on
2000’s (failure to take account of carer’s concerns)
Miss LQ has profound learning disability and is tetraplegic (unable to move all four limbs) - so is
AAppendix A totally dependent on her mother’s care. Her brother, who had the same condition, died some years ago. Miss LQ fell at day care, and sustainted a fracture of the left humerus (upper arm). She was treated with plaster of paris immobilisation and sent home. Over the next thirteen weeks she was in almost continual pain, severe enough to keep her awake at night and make her either whimper or scream much of the time - depending upon when she last had pain suppressing tablets. Control of her epilepsy deteriorated, such that having previously has seizures once in two weeks she now experienced them several times daily despite the dose of her anticonvulsants being doubled by the neuorlogist.
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Healthcare for people with learning disabilities
Because of the pain she refused to eat normally and lost weight. Her mother took her to orthopaedic Appendix B out patients weekly and repeatedly asked for the fracture to be re-Xrayed to find out why her daughter was in such pain. Because of the awkward shape of the plaster Miss LQ no longer fitted into her matrix chair, so Mother had to carry her from room to room in the outpatient department there being no suitable alternative form of transport, After some weeks LQ began to vomit frequently, whether due to her agitated state provoking gasto-oesophageal reflux, nausea provoked by the side effects of the analgesics (pain killers), the constipating effect of the painkillers, the higher dose of carbamazepine - or a combination of two or more of all these. She lost weight and became weaker.
Appendix B (iii) Appendix B (i)
Comment: health professionals must take account of carers expert knowledge of people with learning disability. They have been repeatedly criticised for not providing adequate pain control for all patients. The evidence given by Miss LQ’s mother appears to suggest a violation of Article 3 of the Human Rights Act - the right not to be tortured or treated in an inhuman or degrading way , as explained on page 37 of NHS policy document Human Rights in Healthcare – A Framework for Local Action (Equality and Human Rights Group. 2007)
She had two admissions to the medical ward during this 13 weekw. The first with a pyrexial illness lasted a few days and was she was diagnised as having a virus. The second lasted two weeks after she was judged dehydrated, and she required intravenous fluids or nasogastric feeding - and at one stage intravenous morphine for pain control. Her mother, fearing Miss LQ would die if her relentlessly progressive decline was not halted, persuaded the medical team to arrange an Xray of the humerus - which showed the two broken ends of the bone to be lying alongside each other rather than end to end. She immediately sought out the orthopaedic surgeon responsible for her care and asked him to do whatever was necessary to cure her symptoms and heal the bones. He asked her “Do you want me to kill her?”. (He later apologised saying he had lost a patient that day). He agreed she might benefit from an operation but said it would have to take place at a nearby tertiary referral centre. He said she would have to wait as there three patients already waiting on a prioritised waiting list, one of whom had a broken neck . Miss LQ’s mother arranged for her to be admitted privately to the tertiary referral centre the next day, and she was examined under a general anaesthetic the day after that. The surgeon removed the plaster, manipulated the fracture and Miss LQ has remained well since - her pain, increased seizures (and anticonvulsant dosage), poor appetite and weight loss all improving progressively from that day.
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Healthcare for people with learning disabilities Appendix C
Herts. Partnership NHS Trust six page physical health assessment protocol
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities
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Appendix D
Healthcare for people with learning disabilities Anonymised Herts Partnership NHS physical health assessment report on a patient whose medical management was problematic
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities
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Healthcare for people with learning disabilities Hertfordshire Partnership NHS Foundation specialist physical healthcare assessment report
Osteoporosis He is at risk of osteoporosis because of his low weight, risperidone treatment and living in an institution. He should ideally undergo bone densitometry - a scan, called a dual energy x-ray absorptiometry (DXA) scan, that is used to measure the density of bones and compare this to a normal range. This test is currently the most accurate and reliable means of assessing the strength of bones and any risk or fracture. Bone densitometry Bone mineral density (BMD) is a measure of the amount of calcified tissue in bones. BMD is best measured using DXA scanning. Dual energy X-ray absorptiometry (DXA, previously DEXA) is a means of measuring bone mineral density (BMD). Two X-ray beams with differing energy levels are aimed at the patient's bones. When soft tissue absorption is subtracted out, the BMD can be determined from the absorption of each beam by bone. DXA is the most widely used and most thoroughly studied bone density measurement technology. DXA does involve a small amount of radiation, it is usually administered by a department qualified to make use of radiation for medical imaging. Commonly known as a bone density scan or bone densitometry, DXA scans are used as a screening and diagnostic test for osteoporosis. The bones that are most commonly fractured in humans with osteoporosis are scanned for screening purposes, although osteoporosis can occur in any bone and is not necessarily uniformly distributed in the skeleton. These include the proximal femur, and the lumbar spine. Under some circumstances, the distal radius and ulna are also scanned, usually in obese patients, or those whose orthopedic impairments make scanning of the spine and hips impossible. Maximal BMD occurs at age 30 in both males and females. This BMD is used as the standard to which all DXA results are compared. A DXA scan report shows the measured BMD, the difference between the measured BMD and the age-sex matched average, known as the Z score, and the difference between the measured BMD and the sex matched average 30 year old standard, known as the T score. A T score of -1.0 to -2.4 is diagnostic of osteopenia, which confers a modest fracture risk. A T score of -2.5 or less is indicative of osteoporosis.
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