This briefing paper from the Pharmacy Community Care Liaison Group is intended to assist pharmacists to provide support to people with learning disabilities and their relatives and carers
There are over one million people in the United Kingdom who have a mild learning disability, and around 200,000 who have a more severe learning disability. The latter often require a complex mix of health, social and educational services.
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Confusion can exist over the distinction between a learning disability and mental illness. A learning disability (sometimes known as learning difficulty) is a significant, life-long condition which has three facets:
A learning disability results from irreversible brain damage or malformation during foetal development or childhood and adolescence. Educational programmes, and provision of health and social care can do much to help people with learning disabilities achieve their full potential. One such example of a learning disability where quality of life has vastly improved is Down's syndrome, a genetic condition. People who have suffered physical injury to the brain after it is fully developed are not regarded as suffering from a learning disability. Although reference may be made in the lay press to "mental age", this is not a term used within specialist services.
Mental illness is different from a learning disability in many ways. Mental illness consists of a temporary, recurring or enduring range of symptoms or patterns of psychological disturbance or both (eg, depression, mania or schizophrenia) which cause distress to the sufferer or others. People with learning disabilities can also suffer from mental health problems or dementia, but there is not necessarily any direct relationship.1
Learning disability ranges from mild to severe, and may or may not be accompanied by challenging behaviour. The support for housing, social, health and educational services required by people with learning disability varies enormously and ultimately affects the number of carers involved.
The great majority of people with learning disabilities live at home, either independently or with their families, and use ordinary services. Their carers, generally their families, are not paid. Those learning disabled people who are cared for in nursing homes, residential care homes, group homes sheltered homes, village communities or long-stay hospitals, can expect to be supported by social services organisations, charities, housing associations, private sector companies, not-for-profit organisations and/or NHS trusts.
The usual model of health and social services delivery for people with learning disabilities is that of the multidisciplinary community team. This team provides a single point of access and makes an assessment leading to a range of specialist provision on a peripatetic or outpatient basis. A pharmacist can make a valuable contribution to this team (see "Examples of good practice", p831).
Many health and social care workers and workers from other disciplines support people with learning disabilities in the community. They include teachers and other education and support staff (including transport drivers), district nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists, psychiatrists, and community nurses for people with learning disabilities (previously known as community mental handicap nurses). Others include care managers, and people working for respite services, day services and employment agencies.
In order to deliver a high quality service for people with learning disabilities, it is necessary to support the person and access the carers and agencies involved. Unfortunately people with learning disabilities do not fit in well into the current provider system.1 People with learning disabilities have a combination of health and social needs which will inevitably move between the health and social services.
Across the country there are historical and geographical variations in the service for people with learning disabilities. Coupled with the varying responsibilities of health and social services, this has led to a variety of commissioners and providers with different organisational philosophies or cultures. Knowledge of local service provision for people with learning disabilities will be of considerable advantage in deciding how to deliver pharmaceutical care.
Funding issues Some reprovision programmes (moving people with learning disabilities from long stay institutions into the community) have slowed down as access to transitional grants for individuals and bridging finance for new services is sometimes difficult.
Funding learning disability services is complex. Current concerns include:
Again, knowledge of local issues will be imperative in order to seek resources or funding. The potential role of the nascent primary care groups in this area, and the likely allocation of resources, will be of great relevance. Any reconfiguration of mental health NHS trusts will also have an impact.
Age-related issues People with learning disabilities are now living longer and many children with very severe health problems are now surviving into adult life. Parents and carers become older and eventually unable to care. There are also some problems associated with transition from paediatric to adult services. Adult services start between the ages of 16 and 19. Some adult services may start at a later date than the end of the child services with the result that a teenager can fall through a gap in services. Pharmacists may be able to offer advice on services available and note the problems.
Key differences between child and adult services are that, for children, medical care may be primarily from paediatricians, and considerable input may be available via the school. For adults, day care may be more limited than earlier, school-based care.
Consent to treatment There is a well recognised difficulty in obtaining informed consent from people with learning disabilities. When a competent person refuses consent this should be respected unless circumstances warrant the use of the Mental Health Act 1983, which is only applicable to the assessment and treatment of mental disorder. In law, no one, not even parents or medical staff, can consent on behalf of an adult who is not competent to give consent. It is the responsibility of the treatment provider to determine the person's competence to give consent, and specialist learning disability professionals should be able to advise general NHS staff when required. Local trusts managing learning disability services should have a policy on consent.
Usually, if a person is not competent to give consent, treatment is lawful provided it is in the person's best interests. In many cases it is not only lawful to treat an individual unable to give consent but it is common law duty to do so. However, certain forms of treatment that give rise to special concern, such as sterilisation, should be referred to a court.2
A recent House of Lords judgment on consent3 has implications for learning disability services. In the judgment, it was ruled that a decision to detain a man who had been admitted informally to a hospital or nursing home was justified. Concern has been expressed by mental health groups following the ruling, and one of the law lords stated that this decision created "an indefensible gap in our mental health law". Further guidance on the practical consequences of this ruling is expected from the NHS Executive.
Service users' wishes and needs should be at the centre of all services. People with learning disabilities must always be treated with respect and dignity.2 Pharmacists will find "Signposts for success"2 particularly helpful. It promotes good practice by clarifying the role of the NHS in providing services to people with learning disabilities in the community. The publication of guidance documents, reports and the NHS and Community Care Act 1990 have all recognised the significance of a clear definition of continuing health care needs.2, 4–7
People with learning disabilities over the years have faced many health and social problems. These needs have been answered through a variety of services or lack of service provision where the service users had no choice in what was or was not done to them or for them. People with a learning disability, like all service users, are entitled to choice. Services need to be developed which can support people with a learning disability in living independent lives.
Information on what people with learning disabilities believe they need has been collected by the Mental Health Foundation,1 and can also be found in some community care plans.
What people with learning disabilities are seeking is:
Recognition that people with learning disabilities have equal rights of access to NHS services and responding to these needs were addressed in the health service guidelines HSG (92)42.4
The guidelines state: "Health services professional staff will need to be made available to provide training, advice and support to local authority staff and to help assess the needs of individuals with learning disability, and to provide health services for them." Pharmacists will need to respond.
People with learning disability may have multiple problems. Some of these problems will be obvious, but many are less obvious and difficult to identify. These people often suffer from poor physical health, much of which is preventable through treatment and a healthy lifestyle. The average GP practice has six to 10 people with a severe learning disability. There is no precise information available nationally about the number of people with learning disabilities, or the degree of those disabilities. The number may be growing as advances in health care mean people with particular forms of disability have a greater life expectancy.4 There can be a higher proportion of people with learning disability in some areas, depending on reprovison programmes, as group or community homes are set up near to a closed, closing or evolving institution.
Communicating feelings, symptoms and discomfort can be difficult and frustrating for people with severe learning disabilities: the person may not be able to talk clearly, communication may be by signing, reduced communication will affect the description of illness and symptoms, or illness may be missed or misinterpreted. Palliative care and pain management should not be denied.
People with learning disabilities may have all the usual health problems, including eating disorders and substance abuse, such as that involving excessive amounts of caffeine, nicotine or alcohol. The use of "well woman" and "well man" clinics may not be offered or the need acknowledged.
Physical health needs Some people with learning disabilities also have a physical disability, and may have unusual body size and shape. Resulting issues include:
Medical care needs People with learning difficulties may also have general medical problems, which are often difficult to diagnose and treat. Commonest medical problems are:
Other less common problems may include:
Mental health problems Provision of care may come from mainstream psychiatric services but more often from specialist services. Diagnosis of concurrent mental illness is a large problem.
Mental health problems are difficult to diagnose, treat and monitor. For example, depression may occur quite naturally but even the physical symptoms may go unrecognised. This also applies to schizophrenia and anxiety.
Challenging behaviour Challenging behaviour is now used as a term for aggresive and socially unacceptable behaviour, and may be exacerbated by co-existing medical problems. Lack of social skills may appear as aggression, such as touching or grabbing a person inappropriately.
Bereavement The loss or death of friends, relatives or long-standing carers will affect people with learning disabilities as much as anyone. Relevant personal history is essential in identifying problems.
Monitoring of drug treatment Side effects of drugs are a real problem if unrecognised and can seriously affect quality of life. The person will lose confidence in their carer, and the carer in the service provider. The range of side effects caused by drugs can also be confused with symptoms of an underlying condition. An undiagnosed condition may be incorrectly recognised as a side effect of a drug and vice versa. Examples of common difficulties are outlined in Table 1.
Table 1: Examples of common difficulties |
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| Symptoms | Possible causes |
| Gastric bleeding | NSAIDs
Underlying GI ulcer |
| Akathisia (restlessness) | Antipsychotic medication
Can be misdiagnosed as agitation and antipsychotic dose increased |
| Bruising | Anticoagulants
Can be interpreted as abuse |
| Increase in frequency of fits | Excessive or inappropriate use of antiepileptic drugs
Reduced epileptic control following changes in brand of drug dispensed |
| Psychosis or odd behaviour | Use of anticonvulsants (so-called "forced normality")
Schizophrenia |
| Falls or increased clumsiness | Drug-related blurred vision or postural hypotension
Natural clumsiness |
Unrecognised bereavement, sexual or physical abuse, or "copycat" behaviours can also sometimes be misinterpreted as side effects of medication.
People with learning disabilities who have recently moved into the community in a reprovision programme may present an additional set of problems and issues:
All these issues will be addressed for each person through individual assessments and care plans involving all relevant disciplines and agencies.
Advocacy People with learning disability have been stigmatised over the years. Even after moving into the community, a person with a disability may not be allowed to wait in a GP's waiting area in case their presence upsets the other patients. For the same reason, they may have difficulty in obtaining dental treatment. Parents, advocates and carers may need advice as to how to approach a GP or other health care professional, eg, knowing how to describe adverse drug effects, request medication changes or review, knowing the options available, etc. An advocate may have been appointed if there is no family, or where relatives are too elderly or frail. Just like a parent or carer, the advocate will be a representative.
Carers Unpaid carers' needs were considered in an earlier paper produced by the Pharmacy Community Care Liaison Group.8 There are important differences regarding accountability between differing types of carer.
Group homes Many of the pharmaceutical issues which arise will be similar to those in other forms of residential care (see Panel, p829).
Examples of problems that often arise in group homes for people with learning disabilitiesMultiple pharmacies Use of two or more different pharmacies, eg, if medicines are required urgently
Home remedies and over-the-counter medicines A group home may need assistance with writing home remedies and over-the-counter medicines policies because of the risks of interactions with prescribed medicines |
The training of staff and carers for people with learning disabilities raises specific issues unlikely to be encountered elsewhere. For example, in some areas, psychiatrists and neurologists have developed joint epilepsy clinics. The outcome is better where there is a specialist epilepsy service with staff who are experienced in epilepsy and learning disability.2
Joint commissioning is likely to be the way forward to co-ordinate services. During reprovision, social integration issues may be viewed as far more important than health issues. There may be strong anti-establishment or anti-institution feelings, as people in institutions may have had few opportunities to exercise choice. The carers will want people who have moved into the community to achieve as much as possible.
Different organisational philosophies and cultures may cause unforeseen difficulties in training. Carers in a family setting or in an employed position may have strong personal views on medication. For example, an adult who has had fits regularly through life may be perceived as not benefiting from medication. As a consequence, medicines may be taken or given haphazardly, or not at all. Another example is withholding analgesia, neuroleptics, antidepressants, or other drugs in case the person becomes "addicted".
Direct support to people with a learning disability in group homes, residential settings and day services will involve the administration of medicines. Awareness and knowledge of the providers' drugs policy or guidelines and the staff allowed to administer medicines, will be vital in the training in medicine administration. The policy or guidelines should cover the following:
Epilepsy can worry carers in all settings. Training in relation to management of epilepsy is particularly important. This should include recognition of seizures, and how to live as normal a life as possible while taking sensible precautions in everyday life and social activities, for example, to prevent injuries during a fit. Guidelines and clear procedures on administration of rectal diazepam must be provided.2 Such issues can be addressed through risk management.
Areas where pharmacists can provide support to people with learning disabilities and how pharmacist support can be made available
People with learning disabilities and their families require access to general health information, which pharmacists can provide through health education activities and other means. The families also wish to know about particular problems experienced by people with learning disabilities and about the services available.
Examples quoted in "Signposts for success"2 include:
Providing accessible information means consultation with service users and the development of:
People with learning disabilities have many problems in gaining access to health services. These are similar to those experienced by many people. They include: physical access, staff attitudes, waiting times, low expectations, fear of clinical settings and communication and literacy problems. Personal health records may be kept by individuals and their carers, and may be a useful source of information (in addition to patient medication records kept in a pharmacy). Personal health records can be valuable in ensuring that the person and the carers know what has happened in the past, the reason for future appointments and also for co-ordination of professional input.
Many of the pharmaceutical needs of people with learning disabilities are no different from those of other people, but the ones that are more likely to arise are outlined in Table 2.
Table 2: Pharmaceutical problems and support suggested |
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| Pharmaceutical problem | Pharmacist support |
| Health needs may not be recognised and appropriate help obtained2 | Offer advice on the role and appropriate use of drugs |
| Patient information leaflets are often not provided and medicines may not be used properly if labelled "to be taken or used as directed" | Patient information leaflets and full labelling |
| Even if person has reading skills, sight problems may preclude use of normal labels | Large print labels or pictograms may be appropriate |
| A condition may not respond to drug therapy because medicines are hidden or tablets are spat out | Check this with carers |
| Bottles and products for internal and external use may be used for several years after opening | Mark expiry dates after opening |
| The application of "for external use only" medicines and measuring out oral liquids require more instructions than the average label provides and counselling is essential | Some examples of simple but practical questions and issues typically raised by carers:
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| If female clients require cyclical treatment, those administering medicines may not appreciate the importance of following the requisite days | Advise all carers, especially men, of rationale for cyclical treatments |
| Advice on self administration of medication may be requested | The decision to commence self-medication should be multidisciplinary, and follow an assessment process. Success relies on good communication between all concerned, and may require a considerable time commitment. The group home or family will need assistance in the risk management process. Whatever option is chosen, the situation must be reviewed on a regular basis to allow for any changes in circumstances. Resources are available to support pharmacists advising on self-medication programmes9 |
| Optimising constipation management and reducing need for enemas | Advise on most suitable laxative use. A healthy diet, including fibre and adequate fluid, is to be encouraged |
| Dose(s) may be missed | Give advice on action to be taken |
| Clients may go on holiday for a few days or weeks, in UK or abroad | Carers may need advice and assistance on:
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| Taking oral medicines may not be as simple a task as for others | Taking medicines should be explained. Advice should include simple instructions such as taking with food. If the medicine is not liked because of its size, is there a liquid or dispersible presentation available? Can the tablet be crushed or incorporated in a favourite food? |
"Signposts for success"2 recognises the importance of community pharmacies in providing a means for self-referral for pharmaceutical services, and that primary health care teams (and the pharmacists within them) need to work closely with paediatric and learning disability services to provide an integrated service. It also recognises the importance of the pharmacist's ability to help service users, their families and carers, and facilitate access to services. People with learning disabilities need to have information about how to use their medicines correctly.
Two relevant quotes from "Signposts for success" from people with learning disability are, "I can't read the instructions when I get tablets and things. It would be good if they put it on a tape", and "They could tell us about our tablets and what they do for us".
Some examples of good practice in the matter of supporting people with learning disabilities follow.
Pharmaceutical care provided by a community pharmacist for a home with 12 residents A wide variety of practical medication issues have been addressed, including over-the-counter medicines and clinical problems.
Contact: Mike Straus (community pharmacist, Herbert and Shrive Ltd, tel 020 8977 1967) or Debbie Paterson (service manager, Kingston Road Houses, tel 020 8977 1226)
Epilepsy training package: What is epilepsy? How do we deal with it? A pharmacist and nurse from the joint service for people with learning disabilities (Kingston and district community trust and the London Borough of Richmond upon Thames) have prepared a training package and give presentations to staff and carers within the service.
Contact: Danny Bungaroo (community learning disability nurse, tel 020 8977 6881) or Rosemary Smith (community services pharmacist, tel 020 8355 2807)
West Herts community health NHS trust - epilepsy clinic The clinic was set up in July, 1995, under the guidance of a consultant psychiatrist, to provide continuity of care for people with learning disabilities who had been resettled into the community. GPs were also invited to refer any of their learning disabled patients with poorly controlled epilepsy who were living at home. A multidisciplinary approach was taken, the team comprising a staff grade psychiatrist, a clinical nurse specialist and a clinical pharmacist. Each member contributes their own particular expertise to the service, providing support for each other, the clients and their carers.
The objectives are to optimise drug therapy, aiming for monotherapy, to minimise side effects and adverse drug reactions, to achieve the greatest possible reduction in seizures, and to improve quality of life.
The pharmacist uses her knowledge of drugs, their doses and interactions and interpretation of blood tests to achieve these objectives. The incidence of side effects is checked at each visit and changes to medication recommended where necessary. A thorough explanation is given when a new drug is introduced and a written record is provided when a regimen is changed. Advice is given on suitable formulations for people who have difficulty in taking medicines, on compliance aids and on the care and storage of medicines at home. The pharmacist is available to answer carers' queries between appointments.
Contact: Judith Barton (pharmacy manager, Horizon NHS trust, Harperbury hospital, Harper Lane, Radlett, Hertfordshire WD7 9HQ, tel 01923 427239)
ACKNOWLEDGMENTS We thank Ms Judith Barton, (Harperbury hospital, hertfordshire), Dr David Branford (South Derbyshire mental health trust) and Ms Brenda Haymer (Halton general hospital).
| 1. Update learning disabilities NHS Confederation. Issue number 2, May, 1997. |
| 2. Signposts for success in commissioning and providing health services for people with learning disabilities: Good practice. NHS Executive, 1998 (obtainable from Department of Health, PO Box 410, Wetherby LS23 7LN). |
| 3. R v Bournewood Community and Mental Health NHS Trust, ex parte L. Times June 30, 1998. |
| 4. Health services for people with learning disabilities (mental handicap). NHS Executive HSG(92)42. |
| 5. NHS and Community Care Act 1990. |
| 6. Social care for adults with learning disabilities (mental handicap). Local Authority Circular (92)42:6. |
| 7. The health of the nation: a strategy for people with learning disabilities. London: Department of Health 1995. |
| 8. Supporting carers - a role for pharmacists. Pharmacy Community Care Liaison Group. September, 1994 (available on group's website www.nmhc.co.uk/pcclg.htm). |
| 9. Take good care of medicines, A training pack for staff in residential care . Centre for Pharmacy Postgraduate Education, University of Manchester 1990. |
Pharmacy Community Care Liaison Group
The Pharmacy Community Care Liaison Group is an appointed body which includes experienced pharmacist practitioners from many branches of the profession.
The group's website is located at www.nmhc.co.uk/pcclg.htm |