1. Understand issues
related to access to health care services for individuals with learning
disabilities.
1.1 - Explain
the rights based approach to accessing health care services.
In relation
to health, a rights-based approach means integrating human rights norms and
principles in the design, implementation, monitoring, and evaluation of
health-related policies and programmes. These include human dignity, attention
to the needs and rights of vulnerable groups, and an emphasis on ensuring that
health systems are made accessible to all. The principle of equality and
freedom from discrimination is central, including discrimination on the basis
of sex and gender roles. Integrating human rights into development also means
empowering poor people, ensuring their participation in decision-making
processes which concern them and incorporating accountability mechanisms which
they can access.
Ø
Some of the reasons why a
rights-based approach to health and social care is considered to be best
practice are that it:
ü
Supports health and social care
staff in meeting their professional ethical obligations;
ü
Improves both the quality and
effectiveness of health and social care, improves decision-making processes and
enhances the health and well-being of all service users;
ü
Helps health and social care
staff to better understand the range of societal and cultural factors that
impact upon an individual’s health and well-being;
ü
Reduces complaints and
litigation.
1.2 - Identify
inequalities in access to health care services in different sections of the
population.
The
distribution of health is determined by a wide variety of individual,
community, and national factors. There is a growing body of evidence
documenting inequalities in both the distribution of health (i.e. health
outcomes) and access to health care both internationally and in the UK. Access
to health care is a supply side issue indicating the level of service which the
health care system offers the individual. |
Researchers have documented inequalities in the distribution
of health by social class, gender, and ethnicity. Inequalities in health have
been measured using many different outcomes including infant deaths, mortality
rates, morbidity, disability, and life expectancy.
Ø
The Black Report
The Black Report, published in 1980
confirmed social class health inequities in overall humanity (and for most
causes of death) and showed that health imbalances were widening. The report
set out four possible methods to explain widening social economics health
inequalities:
·
Social selection:
Health determines social position. Somewhat similar to
Darwins natural selection, i.e. healthy people are more likely to get promoted
while unhealthy people are more likely to lose their jobs.
·
Behaviour:
Individuals in the lower social classes indulge in
comparatively more health damaging behaviour.
·
Material circumstances:
Poverty causes poor health
Ø Whitehall
Study of British Civil Servants
·
The ongoing Whitehall Study of British Civil
Servants http://www.ucl.ac.uk/whitehallII/
is a cohort study following British
civil servants over a long period of time. It collects detailed information on
risk factors such as weight, cholesterol, smoking, and blood pressure. The
study found inequalities in health and mortality between employment grades and
found that risk factors could only explain one-third of the observed variation
in health by employment grade.
Ø The
Acheson Report
·
The Acheson Report published in 1988 found that,
ortality had decreased in the last 50 years but that inequalities in health
remained, and in some instances health inequalities had widened. The report
recommended.
1.
Evaluating all policies likely to affect health
in terms of their impact on inequalities.
2.
Giving high priority to the health of families
with children.
3.
The government should take steps to reduce
income inequalities and improve living conditions in poor households.
1.3 - Analyse how different investigations,
inquiries and reports have demonstrated the need for improved access and
services for individuals with learning disabilities.
People with
learning disabilities have poorer health than non-disabled Service users,
differences in health status that are, to a significant extent, avoidable.
These health inequalities start early in life, and result from the interaction
between multiple processes.
Carrying out of
annual health checks for people with learning disabilities in England has been constantly
recommended over the past 5 years as one component of health policy responses
to the poorer health of people with learning disabilities.
1.
Following a proper
Investigation into the health inequalities experienced by people with learning
disabilities, the Disability Rights Commission in 2006 recommended the
introduction of annual health checks for people with learning disabilities in
England and Wales as a ‘reasonable adjustment’ in primary health care services.
2.
Annual health checks for every
adult on a local authority register were introduced as a Direct Enhanced
Service (DES) in primary care services in Wales in 2006.
3.
The introduction of annual
health checks for people with learning disabilities in England was also recommended
by the 2008 Independent Inquiry into Access to Healthcare for People with
Learning Disabilities. In September 2008 the NHS and the British Medical
Association announced plans for a Direct Enhanced Service (DES) to deliver
annual health checks in England.
4.
In February 2009 directions
were published by the Department of Health that required PCTs to offer GP
practices in their area the opportunity to provide health checks for people
with learning disabilities as part of a DES scheme. The DES, originally agreed
for two years (2008-9 and 2009-10), has since been extended for at least
another year (2010-11).
5.
Since that time significant
progress has been made in increasing access to annual health checks across
Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs) in England.
1.4 - Describe the impact of legislation, policy or
guidance underpinning the need for health care services to enable access to
individuals with a learning disability.
Each of the
four UK countries has its own policies on how the needs of people with learning
disabilities should be met. These policies describe a holistic approach for
supporting people with learning disabilities to reach their potential and take
their place in the community.
The policies aim to improve quality of
life and are based on broad themes:
ü Citizenship
ü Empowerment
ü having choices and making decisions
ü having the same opportunities as other people
ü having the same rights as other people
ü Social inclusion.
The UK
policies on people with learning disabilities are:
Ø
England:
Department of Health (2009) Valuing people now: a new three year
strategy for people with learning disabilities.
Ø
Northern Ireland:
Department of Health and Social Security (2005) Equal lives: review
of policy and services for people with a learning disability in Northern
Ireland.
Ø
Scotland:
Scottish Executive (2000) The same as you: a review of services for
people with learning disability.
Ø
Wales:
Learning Disability Advisory Group (2001) Fulfilling the promises:
report of the learning disability advisory group.
Each policy
addresses health needs in various ways, but focus on similar issues, including:
·
Promoting collaborative working
between general health services (primary and secondary care) and specialist
learning disability services.
·
People with learning
disabilities to access general health services with support from specialist
services when needed.
·
General health care staff to
receive adequate training on the needs of people with learning disabilities.
·
Offering people with learning
disabilities an individualised health care plan.
·
In England and Northern Ireland
people with learning disabilities should be offered a health action plan and
should be facilitated to develop their plan and ensure it is implemented.
·
Ensuring that people with
learning disabilities are offered regular health checks and are included in
health screening programmes.
These
policies have been specifically developed for people with learning
disabilities, but it is vital to remember that all policies and laws are
relevant to people with learning disabilities, including each of the National
Service Frameworks.
1.5 - Analyse how legislation, policy or guidance
on capacity and consent should be used with regards to individuals considering
and receiving treatment.
In the past
it was assumed that having learning disabilities meant people lacked the
capacity to make decisions. However, it is now recognised that people with
learning disabilities have as much right to make decisions for themselves as
anyone else.
UK laws on
consent to examination and treatment serve the population as a whole, which
includes people with learning disabilities. The four countries of the UK have
developed, or are in the process of developing, legislation regarding consent
law. While these acts may differ in terminology and process all are based on
similar principles and, with regard to consent to examination or treatment,
have similar expectations of health care staff.
The
underlying principles of consent to treatment is that no adult can make a
decision on behalf of another adult (an individual over the age of 16 years),
and that it must be assumed that a person has the capacity to make a decision
unless proved otherwise. As health care professionals we may consider that
there is an issue in regards of capacity if a person has a mental disorder. In
England and Wales the Mental Capacity Act (2005) provides a list of what
constitutes a mental disorder, of which learning disabilities is included. This
does not mean that the person lacks capacity, just that you may need to assess
the individual’s capacity to make a particular decision. Other reasons why you
may want to assess capacity include:
Ø
The person has made several
unwise decisions.
Ø
You believe the person is being
coerced.
Ø
The person is suggestible
and/or acquiesces.
When
assessing capacity it is important to remember that adults with or without
learning disabilities can refuse examination or treatment, even if it is
detrimental to their health, as long as they have the capacity to do so.
Before you
can conclude that a person has or does not have capacity, you must ensure that
the individual has been given sufficient support and information to help them
make the decision. People with learning disabilities might have difficulty understanding
information, and health care professionals should take all the necessary steps
needed to support them to make decisions.
According to
the British Medical Association and The Law Society (2004), in regards to
assessing health related decisions the person being assessed needs to:
Ø
Understand in simple language
what the medical treatment is, its nature and purpose, and why it is being
proposed.
Ø
Understand its principal
benefits, risks and alternatives.
Ø
Understand in broad terms what
will be the consequences of not receiving the proposed treatment.
v
Other relevant policies
All policies and laws that apply to the general population apply to
people with learning disabilities. Policies that might be particularly relevant
to people with learning disabilities include:
ü
Carers and Disabled Children’s
Act (2000)
ü
Disability Discrimination Act
(1995)
ü
Human Rights Act (1998)
ü
Mental Health Act (1983)
ü
Mental Health (Care and
Treatment) (Scotland) Act 2003
2.
Understand the health care needs that may affect individuals with learning
disabilities.
2.1 - Analyse trends of health care needs among
individuals with learning disabilities.
Patterns of
health service provision for people with learning disabilities are shifting.
The residual hospital provision is mainly for specialist psychiatric assessment
and treatment and also for some continuing care of people with severe and
complex health problems. ‘Social care’ is no longer the responsibility of
health services and the emphasis is much less on the disability and much more
on support to the individual to build on strengths and respond to needs. There
is a risk that this change of emphasis could lead to neglect of health care
needs, and there has been a recent resurgence of interest and concern in this
area (Lindsey, 1998). The difficulty in separating health from social care,
particularly for people with long-term and complex needs, has led to an
increasing emphasis on partnerships between organisations. Also, there has been
an increasing awareness that the problems of institutionalisation and
poor-quality care can arise in any care setting and that organisations that
commission, provide and monitor services must work together to ensure that
service delivery is optimal in terms of quality and effectiveness.
Most causes
of learning disabilities occur before, during or soon after birth, but become
apparent during the developmental period which extends from early childhood up
to when an individual reaches the age of 18.
Some people
experience brain damage in adult life, following an accident or through the
effects of disease for example, which can result in a significant impairment of
intelligence and social functioning. However, these individuals are not
considered to have learning disabilities since their disabilities were acquired
after their brain developed and are likely to use acquired brain injury
services.
The term
‘learning disabilities’ replaced ‘mental handicap’ in the early 1990s and is
used throughout the UK, although other terms, such as ‘intellectual disabilities’,
are increasingly being used internationally. Some people with learning
disabilities prefer to use the term ‘learning difficulties’, but this can lead
to confusion since it is also used in some educational settings to describe
specific conditions such as dyslexia.
People with
learning disabilities live in a wide range of settings, but the majority live
in the family home. People with milder learning disabilities might live by
themselves or semi-independently, with a few hours of support each day. People
who need a greater level of support, and do not live in the family home, might
live in supported housing which is generally managed by private or voluntary
organisations, although some are managed by health and social services.
Some people
who present with severely challenging or offending behaviour, and/or have
severe and enduring mental health problems as well as learning disabilities,
might live in more specialist services which provide assessment and treatment.
People with learning disabilities who have committed offences might be given a
custodial sentence and, therefore, live in prison.
The health of
people with learning disabilities has steadily improved over the last 30 years.
However, they still have higher levels of health needs than their non-learning-disabled
peers. When people with learning disabilities access primary and secondary
services staff might experience difficulty in meeting their needs.
Although
people with learning disabilities live longer than they did decades ago they
still have higher mortality rates than people without learning disabilities.
People with more severe learning disabilities, and people with Down’s syndrome,
have the shortest life expectancy of the learning disability population. The
highest causes of death for people with learning disabilities are respiratory
disease followed by cardiovascular disease; cardiovascular disease tends to be
congenital rather than ischaemic.
People with
learning disabilities have the same health needs as everyone else, but their
risk of developing certain conditions can differ. For example, people with
learning disabilities are less likely to suffer some cancers, including lung
cancer, than people without learning disabilities.
2.2 - Explain systematic approaches that may support
better health and health care for individuals with a learning disability.
Identification of evidence on access to
healthcare services for people with learning disabilities is vital as part of
an ongoing process of appropriate and effective service development. It is
important that effort focuses on identifying and implementing innovations
effective in overcoming these barriers.
Barriers
related to identification of need and communication difficulties run throughout
the model of access adopted for this study. People with learning disabilities
and their carers require support in identifying need and arranging timely
health consultations. Evidence shows that health check programmes are
successful in identifying health problems among people with learning
disabilities, but there is a lack of evidence on whether, and under what
conditions, health checks can be effective as part of routine, mainstream
health services. It is vital that success in identifying need is complemented
by evidence that patients with learning disabilities subsequently obtain and
use appropriate health services.
NHS policies aim
to provide equitable health services to the whole population of England
implying that initiatives, such as the National Service Frameworks (e.g. for
cancer or mental health), should routinely include people with learning
disabilities. Policy for people with learning disabilities recognises that for
them to make full use of mainstream health services some support or
accommodation will be necessary. ‘Having’ and ‘gaining’ access not only require
that the full range of health services is available to people with exceptional
needs, but that they are responsive to them. Changes in mainstream healthcare
provision, such as adoption of person-centred practices, can address the needs
of this group. However, this will only be achieved if the mainstream workforce
is experienced and confident in caring for these patients.
Recent
governmental initiatives outlined in the NHS Plan6 aim to improve patient
involvement within health services. However it is not clear how developing
initiatives such as the Expert Patient Programme, Patient and Public
Involvement Forums, and Choice and Responsiveness consultations aim to include
people with learning disabilities and their advocates as participants. These
patients are amongst the most challenging to design services for and deliver
services to. Their participation in initiatives of this type can prompt service
improvements that will benefit people with a wide range of disabilities.
Inclusion requires proactive and supportive approaches to ensure the views and
experiences of people with learning disabilities are heard and their health
needs met.
2.3 - Research the difficulties in diagnosing some
health conditions in individuals with a learning disability.
Learning
disabilities (LD) vary from person to person. One person with learning
disabilities may not have the same kind of learning problems as another person
with learning disabilities. One person may have trouble with reading and
writing. Another person with learning disabilities may have problems with
understanding math. Still another person may have trouble in each of these
areas, as well as with understanding what people are saying.
Researchers
think that learning disabilities are caused by differences in how a person's
brain works and how it processes information. Children with learning
disabilities are not "dumb" or "lazy." In fact, they
usually have average or above average intelligence. Their brains just process
information differently.
Up to 30% of
people with learning disabilities also have physical disabilities, most often
owing to cerebral palsy, and they need input from a range of specialist
services. A large number of serious health problems are secondary to these
physical disabilities (e.g. gastro-oesophageal reflux, aspiration pneumonias,
risk of choking, joint pains and muscle spasms). The chronic discomfort caused
by such problems may present as a behavioural problem and this can lead to misdiagnosis.
Pain management is particularly important for people who cannot easily
communicate their discomfort.
Ø
Epilepsy
Epilepsy is difficult to diagnose. This is because there is no one
test that can say that someone has epilepsy. Diagnosing epilepsy in a person
with learning disabilities can be even more difficult. This is for several
reasons. For example, some people with learning disabilities have repeated
behaviours, or movement disorders, which can be mistaken for seizures.
They might find it hard to let others know what has happened to
them, or how they feel. An epilepsy specialist is the best person to decide
which symptoms are epilepsy, and which are not. This is important to make sure
the person gets the best treatment for their condition.
Ø
personality disorders
Though contentious, the diagnosis of personality disorders in
persons with learning disability is clinically relevant because it affects many
aspects of management. The variation in the co-occurrence of personality
disorder in learning disability, with prevalence ranging from less than 1% to
91% in a community setting and 22% to 92% in hospital settings, is very great
and too large to be explained by real differences.
The diagnosis of personality disorders in learning disability is
complex and difficult, particularly in those with severe disability. Developing
consensus diagnostic criteria, specific for various developmental levels, is
one way forward. Such criteria may need to include objective proxy measures
such as behavioural observations and informant accounts.
·
Problems in diagnosis
o
In those with average ability,
lasting personality characteristics develop by adolescence. However, the
developmental phase for personality characteristics among people with learning
disability should be longer (Royal College of Psychiatrists, 2001).
o
Communication problems,
physical, sensory and behavioural disorders associated with learning disability
affect the ability to diagnose a personality disorder (Khan et al, 1997). The
diagnosis of personality disorders often requires subjective information about
thoughts and emotions, difficult to elicit in those with severe degrees of
learning disability. Consequently, a particular pattern of behaviour diagnosed
as ‘personality disorder’ in those with mild or moderate learning disability
may be perceived as ‘ behavioural disorder’ in those with severe or profound
disability.
o
The criteria for several
personality disorders assume a level of cognitive ability which may be absent
in those with learning disability. Dissocial (Goldberg et al, 1995) and
paranoid personality disorders are examples. Difficulties in establishing
concepts such as ‘preoccupation with unsubstantiated, conspiratorial
explanations of events either immediate to the patient or in the world at large’
in a group with significant cognitive limitations are self-evident.
o
People with learning disability
often display behaviours that overlap with features of some personality
disorders.
3.
Understand good practice in supporting people with a learning disability to
access health care services.
3.1 - Analyse the effectiveness of existing
communication systems and practices in supporting individuals to meet their
health care needs.
Accessible
information and good communication skills are crucial if people with learning
disabilities are to have equal access to all health care services. People need
to be able to access information they can understand and with which they can
make decisions about their health. People with learning disabilities also need
information on how to stay well.
Health and
social care professionals have to develop effective communication skills in
order to work with the diverse range of people who use and work within care
services. The two contexts, or types of circumstances, in which communication
and interaction occur are one-to-one and group contexts.
Ø
One-to-one communication
Bb One-to-one communication occurs when one person speaks with or
writes to another individual. This happens when a care professional meets with
a person who has health worries or personal concerns, such as during a
doctor–patient appointment for example. Lots of one-to-one communication also
occurs when care professionals meet with and talk to each other or with the
partners, relatives or friends of people receiving care.
Communication in one-to-one situations is most effective when both
parties are relaxed and are able to take turns at talking and listening.
Effective communicators are good at:
·
Beginning the one-to-one
interaction with a friendly, relaxed greeting.
·
Focusing on the goal or
‘business’ of the interaction.
·
Ending the interaction in a
supportive, positive way.
Ø
Group communication follows
slightly different ‘rules’ to communication in one-to-one situations. There is
often more going on in a group, with a number of different people trying to
speak, get their point across and their voice heard. Turn-taking can be more
complicated; relationships and power issues between group members can also be
more complex than in one-to-one contexts.
Ø
KEY Points of effective Verbal
communication:
ü
Always speak to people with
learning disabilities first, not the person supporting them. If they have
difficulty answering questions then ask their supporter, but remember they may
have different views from each other.
ü
To reduce anxiety and build
confidence start by asking the person some questions you know they can answer.
ü
The average gap between a
person listening and then responding during a conversation is three seconds.
People with learning disabilities may need longer to think about what has been
said and formulate a response.
ü
If you are giving the person
new information, ensure you only use one ‘information-giving’ word or phrase
(for example blood test) per sentence.
ü
If you are talking about
existing information you can use up to four information-carrying words or
phrases per sentence (for example, blood test, clinic, 9am, Monday). For people
with more severe learning disabilities, only use two information-carrying words
per sentence.
ü
It may be helpful (or essential
for people with severe learning disabilities) to have photographs or objects to
accompany each information-carrying word. Some people might use symbols. Talk
to the person who supports them, or contact their speech and language
therapist, so you are prepared.
ü
Try to avoid using negative
words such as don’t, can’t, no and won’t. People with learning disabilities,
and especially those with autism, can find them confusing and harder to
understand. Use positive language, for example, ‘we will go out later’ rather
than ‘we can't go out now’.
ü
If you ask a question that
offers a choice of answers, be aware the person might choose the last one. You
can check this by asking the question again later in a different way.
3.2 - Evaluate different ways of working in
partnership to support individuals to meet their health care needs.
Health
promotion services should work with service users, carers and the agencies
involved to ensure that health promotion is accessible to people of all ages
with learning disabilities and geared to their needs. They also have a role in
educating carers and professionals, who can then promote the health of this
population. It is important to promote mental as well as physical health, but
this is often neglected.
Screening
services should understand the importance of including people with learning
disabilities and helping them to cooperate with screening. Guidance on
accessing breast and cervical screening services has been produced by the
National Cancer Screening Programmes (National Health Service, 2001a,b).
Primary
health care services not only provide care and treatment but also act as a
gateway to specialist services. They therefore play a key role and need to be
well-informed about the needs of people with learning disabilities (Lindsey
& Russell, 1999). A Government White Paper for England (Department of
Health, 2001a) states that by June 2004 all people with learning disabilities
should be registered with a general practitioner (GP) and that all general
practices will have identified all people with a learning disability registered
with the practice. Staff from community learning disability teams will take on
the role of health facilitators to support people with learning disabilities in
gaining access to the help that they need from primary care and other NHS
services. The role of health facilitators should embrace mental as well as
physical needs. Each individual with a learning disability will also be offered
a Health Action Plan, and responsibility for completion and subsequent updating
of this will rest with the health facilitator in partnership with primary care
nurses and GPs. The effectiveness of this novel approach to improving the
health of people with learning disabilities has yet to be evaluated.
Access to
general hospital services continues to cause concern for many families because
these services often lack the sensitivity and flexibility required to respond
to special needs. People with learning disabilities and their carers often
complain that the attitudes of staff are discriminatory. Nevertheless, they
also report a steady improvement over the years, with greater equity of access
and treatment. The same standards of care available to the general population,
for example those described in the recent National Service Frameworks for
England (Department of Health, 1999, 2001b) apply equally to people with
learning disabilities.
3.3 - Explain how to promote access to health care
through the use of reasonable adjustments.
Since the
Disability Discrimination Act, people with learning disabilities (along with
other groups of disabled people) have had a legal entitlement to have equal
access to public services, including those provided by the NHS. Over time,
principally through the Disability Discrimination Act and reinforced in the
recent Equality Act, this fundamental entitlement has been increasingly
well-defined as the Disability Equality Duty.
In law, all
public sector services have a legal duty to make ‘reasonable adjustments’ to
the way they make their services available to people with learning
disabilities, to make them as accessible and effective as they would be for
people without disabilities.
Reasonable
adjustments include removing physical barriers to accessing health services,
but importantly also include making whatever alterations are necessary to
policies, procedures, staff training and service delivery to ensure that they
work equally well for people with learning disabilities.
This legal
duty for health services is ‘anticipatory’. This means that health service
organisations are required to consider in advance what adjustments people with
learning disabilities will require, rather than waiting until people with
learning disabilities attempt to use health services to put reasonable
adjustments into place.
Over the past
20 years, the substantial and wide-ranging health inequalities experienced by
people with learning disabilities have become increasingly well-documented. A
major contributory factor has been stark inequalities in the accessibility of
health services for people with learning disabilities, and the treatments they
receive (or are denied). These inequalities in access and treatment to
healthservices have been thoroughly documented in a series of investigations
and inquiries.
In 2006, the
Disability Rights Commission reported on the findings of its formal
investigation into the physical health inequalities experienced by people with
learning disabilities and/or mental health problems, focusing particularly on
primary care health services. Although there were isolated examples of
effective reasonable adjustments, the general picture was that primary care
services, whilst they had removed physical access barriers (for example through
installation of wheelchair ramps), had not altered the policies, procedures and
requirements that made them in accessible and unresponsive for people with
learning disabilities. There was also evidence of substantial unmethealth needs
amongst people with learning disabilities that were not being addressed through
primary care health screening and subsequent treatment.
In 2007, a
national audit of specialist inpatient healthcare services for people with
learning disabilities carried out by the Healthcare Commission, reported
concerns about aspects of the quality of most services, with common problems in
safeguarding procedures, access to advocates, care planning, staff training,
institutional regimes and rigorous scrutiny of service quality. Also in 2007,
Mencap highlighted the cases of six people with learning disabilities who their
families believed had died avoidably while in NHS or social services care (see
also the ‘Six Lives’ report of the investigation into these six cases by the
Parliamentary and Health Service Ombudsman and Local Government Ombudsman in 2009).
3.4 - Analyse the rights of others significant to
the individual to be involved in planning health care services.
Good quality
service and support should reflect an individual’s needs and goals and take
full account of the individual’s expressed preferences. A failure to take full
account of these matters tends to result in the provision of relatively
generalised service and support, which may not be capable of adapting
sufficiently to effectively address an individual’s needs or goals. By
focussing on the individual, individual planning should encourage service
flexibility and innovation; inform an authority’s strategic service planning
and commissioning processes and achieve better outcomes for individuals.
Health policy
can be defined as the "decisions, plans, and actions that are undertaken
to achieve specific health care goals within a society." According to the
World Health Organization, an explicit health policy can achieve several
things: it defines a vision for the future; it outlines priorities and the
expected roles of different groups; and it builds consensus and informs people.
Health-related
policy and its implementation is complex. Conceptual models can help show the
flow from health-related policy development to health-related policy and
program implementation and to health systems and health outcomes. Policy should
be understood as more than a national law or health policy that supports a
program or intervention. Operational policies are the rules, regulations,
guidelines, and administrative norms that governments use to translate national
laws and policies into programs and services. The policy process encompasses
decisions made at a national or decentralized level (including funding
decisions) that affect whether and how services are delivered. Thus, attention
must be paid to policies at multiple levels of the health system and over time
to ensure sustainable scale-up. A supportive policy environment will facilitate
the scale-up of health interventions.
The modern
concept of health care involves access to medical professionals from various
fields as well as medical technology, such as medications and surgical
equipment. It also involves access to the latest information and evidence from
research, including medical research and health services research.
4.
Understand how to support others to develop, implement, monitor and review
plans for health care.
4.1 - Explain how to champion a person-centered
focus to the health care planning process.
Person-centred
planning is at the heart of much recent policy relating to the provision of
social care services. It refers to a family of approaches aimed at enabling
people who use services to plan their own futures and to get the services that
they need. While the terminology varies between different user groups, the
fundamental values of the concept are the same – embracing the principles of
independence, choice, inclusion, equality and empowerment as the foundations of
service provision. A substantial change is needed in thinking, so that thinking
that has long guided approaches to support person-centred planning becomes
standard within social care services.
Traditionally,
disabled people have been expected to fit into existing services. They have had
little input into the design or delivery of the service they receive. There is
evidence of a change within services in the direction of person-centred
planning; however, this remains partial. While person-centred planning has been
widely endorsed, it has not as yet been fully adopted or implemented across
social care services. Even though the policy focus is on person-centred
planning and it is broadly accepted as the way forward for service provision,
it has proved easier to talk about it than to do it.
Current
services have inherited resource systems that are based on outdated models of
service provision. They were often managed and allocated on a whole-service
basis without reference to the individual. Likewise, funding arrangements need
to be restructured in order to give individuals more choice and control in
designing their own support. An increase in the use of Direct Payments is
conducive to increased choice for individuals. Adequate staffing to support
work with individuals is needed, together with the allocation of sufficient
time for staff to work with service users on devising and delivering
person-centred plans. The potential for person-centred planning is improved
through the development of strategies to support multi-agency working and through
mainstream services being accessible to social care service users. A
requirement of these changes is a fundamental change in the culture that
permeates services so that the idea of person-centred planning is fully
accepted.
Because of
the legacy of traditional approaches to service design, service users often
feel that they have little impact on the way that services are planned and
delivered. However, there are clear calls for more control on the part of
service users and their families. The degree of a person’s disability, illness
or the complexity of their needs should not be regarded as a barrier to
person-centred planning, which, with time and thought, should be available to
each person who uses social care services. The inclusion of family members and
informal support networks is a key component of person-centred planning. The
onus is on services to devise the best way to bring families in and to
encourage the growth of informal networks of support. Families and
professionals may not always agree about what constitutes the best approach to
service delivery, but it is imperative that service providers work to foster
good relationships with families. In relation to service users and their
families, cultural changes in the form of a realignment of power relations
between service users and service providers are needed to facilitate
person-centred planning.
Staff are a
key resource in the delivery of good-quality social care services. While many
skill deficits are identified among frontline staff, there is also an
acknowledgment in the literature that the full range of skills that
practitioners possess are not always recognised or used. Some staff are
described as naturals, in that they instinctively deliver services with a
person-centred approach, without having had any training or direction in doing
so. Moreover, staff often have gathered skills outside their working
environment that could be used within their workplace. While it is important
that existing skills are recognised and valued, there remains a need for
training for frontline staff and for managers in the delivery of person-centred
planning. Training should be designed with the particular needs of support
workers in mind and should take a person-centred approach.
Support for
staff is crucial. This needs to be in the form of appropriate and
person-centred management, and through the development of informal support
structures, such as mentoring or the development of support groups made up of
members of interagency staff teams. For managerial support to be effective in
the implementation of person-centred planning by staff teams, managerial styles
need to be person-centred and inclusive. This would develop a whole-service,
person-centred culture, increasing the likelihood that it would be a sustainable
approach to delivering support.
Several
factors need to be in place to make person-centred planning work. These
include: adherence to the underlying principles of person-centred planning;
sufficient resources and appropriate funding; a trained, confident and
well-equipped staff team who are managed in an inclusive and empowering style
that institutes clear planning and direction for the future.
Achieving
person-centred planning is not a rapid process and it is important that
sufficient time is taken for initiatives to be put in place, and for policy
makers, practitioners and service users to retain their enthusiasm for
establishing this policy, before moving on to the next initiative.
4.2 - Explain factors to consider when supporting
others to develop and implement plans for health care.
Care plan
implementation involves an array of care management activities through which
the care plan is put into effect. These activities may include providing
information about available services, as we ll as educating clients and family
members about how to access services or perform specific care activities
themselves. It may also entail “service coordination,” which can define as the
active involvement of a person or persons, such as clients, family members, or
case managers, in arranging for or maintaining specific services.
Geron &
Chassler (1994) state that care plan implementation should be timely and
cost-effective, with the goal of maximizing “client independence and choice
while using the least intensive, least intrusive, most cost effective, and
highest quality interventions.” Information and education are also seen as
important components of the process, since many consumers are not knowledgeable
about the long-term care system and require specific instruction about how to
maximize their access to and utilization of needed health and social services.
There is also recognition that implementation involves a variety of
considerations, such as the services and goals identified in the care plan,
funding limits and authority to purchase services, availability of local
providers, and size of caseload.
It is widely
recognised that not all clients need or want help with implementing their care
plans. For example, they may not need information about services when the care
plan is simply a replication of services already in place, or they may wish to
coordinate services themselves or have family members who are capable and
willing to do this. On the other hand, some clients do not have the capacity or
desire to implement their own care plans due to factors such as lack of family
support or cognitive or physical impairment. Under these circumstances,
assistance with implementation of care plans for these clients, including
service coordination, may be desired by them or required to ensure safety.
4.3 -
Explain how to support others to monitor and review plans for health care.
In some circumstances for example where service users are particularly
vulnerable or where they might lack capacity it will be necessary to commence
or continue the involvement of an advocacy service in speaking up for the
service user and carer. Where the practitioner judges that this may be
necessary they should consult with their line manager with regard to taking
this action forward.
4.4 - Explain how to challenge health care
providers and services when required to advocate with or on behalf of
individuals.
Advocacy in
this field began when the families of people with mental disorders first made
their voices heard. People with mental disorders then added their own
contributions. Gradually, these people and their families were joined and
supported by a range of organizations, many mental health workers and their
associations, and some governments. Recently, the concept of advocacy has been
broadened to include the needs and rights of persons with mild mental disorders
and the mental health needs and rights of the general population.
Among the
groups involved in advocacy are consumer and “survivor” organizations and a
range of nongovernmental organizations. In several countries, advocacy
initiatives in favour of mental health and persons with mental disorders are
supported and, in some cases, carried out by governments, ministries of health,
states and provinces.
In many
developing countries, mental health advocacy groups have not yet been formed or
are in their infancy. There is potential for rapid development, particularly
because costs are relatively low, and because social support and solidarity are
often highly valued in these countries. Development depends, to some extent, on
technical assistance and financial support from both public and private
sources.
The emergence
of mental health advocacy movements in several countries has helped to change
society’s perceptions of persons with mental disorders. Consumers have begun to
articulate their own visions of the services they need. They are increasingly
able to make informed decisions about treatment and other matters in their
daily lives. Consumer and family participation in advocacy organizations may also
have several positive outcomes.
The roles of
families in advocacy overlap with many of the areas taken on by consumers.
However, families have the distinctive role of caring for persons with mental
disorders. In many places they are the primary care providers and their
organizations are fundamental as support networks. In addition to providing
mutual support and services, many family groups have become advocates,
educating the community, increasing the support obtained from policy-makers,
denouncing stigma and discrimination, and fighting for improved services.
4.5 - Explain how to support others to raise
concerns and challenge health care services.
Usually, the
best way to raise a concern is to do so openly. Openness makes it easier for
the organisation to assess the issue, work out how to investigate the matter,
understand the issues and get more information. A worker raises a concern
confidentially if he or she gives his or her name on the condition that it is
not revealed without his or her consent. A worker raises a concern anonymously
if he or she does not give his or her name at all. If this happens, the best an
organisation can do is to assess the anonymous information as best they can to
establish whether there is substance to the concern and whether it can be
addressed. Clearly if no-one knows who provided the information it is not
possible to reassure or protect them.
The Public
Interest Disclosure Act 1998, known as PIDA or the whistleblowing act, is
intended to promote internal and regulatory disclosures and encourage workplace
accountability and self-regulation. The Act protects the public interest by
providing a remedy for individuals who suffer workplace reprisal for raising a
genuine concern, whether it is a concern about patient safety, safeguarding,
financial malpractice, danger, illegality, or other wrongdoing.
Whistleblowing
is the term used when someone who works in or for an organisation wishes to
raise concerns about malpractice, wrongdoing, illegality or risk in the
organization (for example raising a concern about patient safety) and/or
covering up any of these. The malpractice has a public interest aspect to it,
usually because it threatens others. Whistleblowing applies to raising a
concern within the organisation as well as externally, such as to a regulator
like HIW. Concerns about the actions of healthcare organisations or their staff
and the effects these have on the people they care for inevitably arise from
time to time. Doing something about them is always far better than doing
nothing and we
recognise
that this isn’t always easy.
5. Be able
to develop processes to support others to meet the health care needs of
individuals with a learning disability.
5.4 - Evaluate the impact of systems in meeting
individual’s healthcare needs.
It was common
for a health check to be carried out by a General Practitioner (GP) to measure
individuals health care needs. One study placed a prompt card in GP medical
records to encourage opportunistic health screening of people with learning disabilities.
Other studies describe health checks being carried out by a practice nurse, or
both a practice nurse and GP. Other studies report health checks being carried
out by a community learning disability nurse, or a community nurse, sometimes
in conjunction with a GP, teams of healthcare professionals, through joint
clinics, or by the study authors themselves. One study was identified where the
patient themselves carried out the health check, with the assistance of a
health facilitator.
Studies
varied with respect to how the outcomes of health checks were measured. The
most common outcome measure employed was the extent to which health checks
identified previously undetected health needs. Other studies did not
specifically differentiate between health needs which were newly identified by
health checks and those which may have already been identified. Further studies
look not at health needs per se but the actions arising from health checks,
such as referrals made, health promotion activities undertaken, access to
primary care services and health gain.
The evidence
is clear in indicating that health checks are effective in identifying
previously undetected health conditions in people with learning disabilities.
Only one study found that the intervention made no significant difference to
this outcome. However, in this case the intervention was the insertion of a
prompt card into medical notes which was designed to promote opportunistic
health screening by GPs rather than health screening per se.63 The authors
concluded that: “These results lend weight to the argument that, in the absence
of statutory regulations and considering their current pressures of work, GPs
are unlikely to provide the necessary screening on a purely opportunistic
basis”.
Ø
UK Studies:
“Of 65 patients 57 (88%) had specific health needs identified
through a health screening process. Seventeen had one unmanaged health need,
and five more than one. Unmanaged needs were: hypertension (2); congenital
heart disease (2); arrhythmias (6); abdominal pain (1); testicular abnormality
(3); hypospadias (1); secondary incontinence (1); intermenstrual bleeding (1);
seizure disorder (9); weight loss (1); and blepharitis (1). Of the three people
identified as having testicular abnormalities, one had seminoma and needed
surgery and radiotherapy. Of the six people identified as having arrhythmias,
most had bradycardias in the context of Down syndrome, probably a symptom of
previously undetected hypothyroidism (of 19 people with Down’s syndrome and
only 4 had had their thyroid function checked in the last 5 years). Thirty
three people had wax totally obscuring one or both eardrums; 15 of these failed
the hearing test. Carers were poor at predicting hearing and vision impairment.
For example, carers correctly predicted failure of vision and hearing tests in
less than 50% of instances.”
References
Ø
NHS Health Scotland. People
with Learning Disabilities in Scotland: Health Needs Assessment Report.
Glasgow: NHS Health Scotland, 2004.
Ø
Nocon A. Equal Treatment -
Closing the Gap: Background evidence for the DRC’s formal investigation into
health inequalities experienced by people with learning disabilities or mental
health problems. Manchester: Disability Rights Commission, 2006.
Ø
Department of Health (2009)
Equal access? A practical guide for the NHS: creating a single equality scheme
that includes improving access for people with learning disabilities, London:
DH.
Ø
NHS Quality Improvement
Scotland (2006) Promoting access to healthcare for people with a learning
disability – a guide for frontline staff, Edinburgh: NHS Quality Improvement
Scotland.
Ø
Royal College of Nursing (2007)
Mental health nursing of adults with learning disabilities, London: RCN.
Ø
Royal College of Nursing (2009)
Dignity in health care for people with learning disabilities, London: RCN.
Ø
Scottish Executive (2000) The
same as you: a review of services for people with learning disability,
Edinburgh: Scottish Executive.
Ø
Diploma in Leadership for
Health and Social Care Level 5 – By Nelson Thornes.
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