In past decades many people with learning disabilities will have been cared for in large institutions with their own pharmacy departments. The move of people with learning disabilities to community homes increases demand for pharmaceutical care to be provided by pharmacists practising in the community.

This paper has been prepared in order to give pharmacists in all branches of practice an overview of the issues within learning disabilities and the professional support needed from pharmacists.

( previously known as mental handicap )

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:

• reduced ability to understand new or complex information or to learn new skills (impaired intelligence, usually with an IQ below 70)
• reduced ability to cope independently (impaired social functioning)
• a condition which started before adulthood, with a lasting effect on the individual's development.

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. Brain injured 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 and/or patterns of psychological disturbance which cause distress to the self or others.

(e.g. depression, mania or schizophrenia). People with learning disabilities can also suffer from mental health problems or dementia, but there is not necessarily any direct relationship¹.

The usual model of health and social services delivery for people with learning disabilities is that of the multidisciplinary community teams. These provide a single point of access. This team makes an assessment leading to a range of specialist provision on a peripatetic or out-patient basis. A pharmacist can make a valuable contribution to this team (see Section 10)

Across the country there are historical and geographical variations in the service for people with learning disabilities. Coupled with the varying responsibilites 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.

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:

• the role of GP fundholders/Primary care groups
• the gradual removal of the ‘ring-fence’ on long stay funding from April 1996
• pressure on all resources
• accessing social security benefits due to social security changes and to rulings about place of residence¹.
• Trust reconfigurations

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.

People with learning disabilites are living longer and many children with very severe health problems are now surviving into adult life. Parents and carers will also 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 16-19. 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.

4.3 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 sterilization, should be referred to court².

A recent House of Lords judgement on consent (R v Bournewood Community and Mental Health NHS Trust, ex parte L, 1998, The Times June 30th)³ has implications for learning disability services. In the judgement, it was ruled that a decision to detain a man who was 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.

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 disabilties believe they need has been collected by the Mental Health Foundation¹, and can also be found in some Community Care plans.

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)42⁴.

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’⁴. Pharmacists will need to respond. This paper is intended to assist them to do so.

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 (e.g. makaton)
• reduced communication will affect the description of illness and symptoms
• illness may be missed or misintepreted. Palliative care and pain management should not be denied.

People with learning disability may have all the usual problems of health, including eating disorders, e.g. pica, anorexia or bulimia, and substance abuse such as that involving excessive amounts of caffeine, nicotine or alcohol. The use of ‘well women’ and ‘well men’ clinics may not be offered or the need acknowledged.

Some people with learning disability also have a physical disability, and may have unusual body size and shape. Resulting issues include:

• the need for advice on skin care to prevent pressure sores
• catheter care, continence, feeding difficulites and aspiration
• spasticity, which may require specialised wheelchairs, equipment and hoists
• lack of exercise and dehydration, which can lead to constipation
• malnourishment (under nourished) or inadequate hydration which may go undetected

People with learning difficulties may also have general medical problems, often difficult to diagnose and treat.

• Commonest medical problems are:
• Epilepsy - 25 to 30% of people with a severe learning disability also have one or more types of epilepsy.
• Constipation (sometimes severe) which may require complex management
• Vulnerability to heart disease, diabetes and hypothyroidism.
• Reduced or low mobility, and obesity, may exacerbate existing medical problems.

Other less common problems may include:

• Gastro-intestinal bleeds and ulcers, which may be the result of institutional living from associated infection with Helicobacter pylori or the use of non steroidal anti-inflammatory drugs (NSAIDs).
• Respiratory infections from aspiration or resulting from physical shape (see 6.1)
• Feeding issues involving nutritional supplements to be taken orally or via a PEG tube
• Skin rashes, fungal infections and scalp conditions
• Dribbling and excessive salivation
• Gagging or other swallowing difficulties
• Tardive dyskinesia, which may not be drug-related
• Pre-menstrual tension, management of periods, unrecognised menopause
• Gastro-intestinal infections
• AIDS, Hepatitis B
• Unrecognised prostate problems (incontinence may often be blamed)
• Problems associated with ageing, such as cataracts, dementia

Provision 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 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.

The loss or death of friends, relatives or long standing carers will affect anyone. Relevant personal history is essential in identifying problems.

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.

Unrecognised bereavement, sexual or physical abuse, or ‘copycat’ behaviours can also sometimes be misinterpreted as side effects of medication.

• In long stay institutions, nurses will have cared for people with a learning disability. On reprovision, the majority of people will be cared for in residential settings. The depth of knowledge and experience of the carers will be variable and consequently adequate training will be a priority.
• In institutions certain behaviour may have been ignored. Once in the community, this behaviour may be socially unacceptable or put the vulnerable person at risk.
• In an institution regular meals and drinks are provided from a centralised kitchen. In a small community setting there will be free access to a kitchen with home cooked meals. Gulping food and drink, burns from hot food and drink, excess wind and choking must all be addressed to prevent upset for the person. Heartburn, choking, regurgitation and weight changes may present as symptoms and may mislead those without specialist experience.
• Sexuality and family planning may become a complex issue for some people on reprovision.

All these issues will be addressed for each person through individual assessments and care plans involving all relevant disciplines and agencies.

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, or 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 e.g. knowing how to describe adverse drug effects, request medication changes or review, know the options available etc. An advocate may have been appointed if there is no family, or where relatives are too elderly or frail. Just as a parent or carer, the advocate will be a representative.

Unpaid carers' needs were considered in an earlier paper produced by the Pharmacy Community Care Liaison Group⁹. There are important differences regarding accountability between differing types of carer.

Many of the pharmaceutical issues which arise will be similar to those in other forms of residential care.

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 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 unforseen 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 medication 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 include the following:

• ordering, receipt, storage
• administration, recording, disposal
• what to do about missed doses (e.g people getting up late, absent etc)
• self-administration, verbal orders
• the use of bottles or monitored dosage systems
• ensuring all labels have full directions
• refusing medicines

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 whilst taking sensible precautions in everyday life and social activities, for example to prevent injuries during a fit. Guidelines and clear procedures to follow must be provided with rectal diazepam training². Such issues can be addressed through risk management.

• the use of medication and the recognition of side effects
• daily care of their body
• epilepsy, cerebral palsy and sensory impairments
• maintaining and using aids such as hearing aids, contact lenses and communication aids
• health risks associated with conditions that cause learning disabilities

Providing accessible information means consulting with service users and developing:

• appropriate language, gender and cultural approaches
• text in short clear sentences without jargon
• use of both text and the spoken word together
• involvement of carers, relatives and advocates to reinforce important messages
• good communication, e.g. allowing plenty of time to address communication barriers².

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 very 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 following are more likely to arise.

Signposts for Success 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;

Contact:
a) Mike Straus, Community Pharmacist, Herbert and Shrive Ltd. 0181 977 1967
b) Kingston Road Houses: Debbie Paterson, Service manager, 0181 977 1226

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, 0181 977 6881
Rosemary Smith, Community Services Pharmacist, 0181 355 2807

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 have been resettled into the community. General Practitioners 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, 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
• minimise side effects and adverse drug reactions
• achieve the greatest possible reduction in seizures
• improve quality of life

The pharmacist uses her knowledge of drugs, their doses, 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 medication, on compliance aids and on the care and storage of medicines at home. The pharmacist is available to answer carers’ queries in between appointments.

Contact: Judith Barton, Pharmacy Manager, Horizon NHS Trust, Harperbury Hospital, Harper Lane, Radlett, Herts WD7 9HQ Tel: 01923 427239

1. Update learning disabilities, The 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, Jan.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, 1998 The Times June 30th

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. Department of Health 1995.

8. Take Good Care of Medicines, A training pack for staff in residential care Centre for Pharmacy Postgraduate Education, University of Manchester 1990

9. Mental Health - a distance learning pack for pharmacists Centre for Pharmacy Postgraduate Education, University of Manchester 1994

10. Supporting carers - a role for pharmacists, Pharmacy Community Care Liaison Group September 1994, (available on Group’s website www.nmhc.co.uk/pcclg.htm)