Week 11

Question 1

User involvement

Answer 1

-making decisions about own health care
-commissioning and designing services
-teaching professionals and developing learning materials
-staff recruitment
-evaluating services
-governance (non executive roles)

Question 2

Making decisions about own health care

Answer 2

Patients can play a distinct role in their health care by:
-understanding the causes of disease and the factors that influence health
-self diagnosing and treating minor self limiting conditions
Selecting the most appropriate treatment for acute conditions in partnership with health professionals
-managing treatments and taking medications appropriately
-monitoring symptoms and the effects of treatment
-being aware of safety issues and reporting them
-learning to manage the symptoms of chronic disease and
-adopting healthy behaviour to prevent the occurrence or recurrence of disease

Question 3

Health literacy

Answer 3

“The ability to make sound health decisions in the context of everyday life-at home, in the community, at the workplace, the health care system, the market place and the political arena”
-functional skills
-interactive skills
-critical skills

Question 4

Health literacy interventions around the world thus have three key objectives

Answer 4

To provide information and education
To encourage appropriate and effective use of health resources
To tackle health inequalities

Question 5

Sharing is a two way exchange

Answer 5

Health professional as an expert
Patients social circumstances, attitudes to illness and risk, values and preferences will have a weighting
Patient shares the decision making but also the responsibility for the decision and risks

Question 6

Self management self care

Answer 6

The goal of self management support is to enable patients to perform three sets of tasks:
-managing their illness medically- for example, taking medication or adhering to a special diet
-carrying out normal roles and activities and
-managing the emotional effect of their illness

Question 7

Self efficacy (bandura)

Answer 7

An individuals belief in their capacity to learn and perform a specific behaviour
Confidence and ability is key to empowerment and motivation
Interventions for self care: building confidence and equipping patients with knowledge and skills

Question 8

Initiatives to educate patients in self management skills

Answer 8

People with chronic conditions: depression, eating disorders, asthma, hypertension, diabetes, COPD
Patients gain health benefits
Reduction in the rate of hospital admissions

Question 9

Self management

Answer 9

Well trained clinicians, nurses, pharmacists
Patient empowering techniques:
-coaching
-prompt cards
-diaries or topic lists
Decision aids give patients a more accurate perception of risk

Question 10

To foster a culture of partnership between health professionals and patients, professionals need to develop a specific set of skills and attributes. These are:

Answer 10

An understanding of the patient perspective
Ability to guide patients to sources of information on health and health care
Ability to educate then about protecting their health and preventing the occurrence or recurrence of disease
Ability to elicit and take into account of patients preference
Ability to communicate information on risk and probability
The ability to share treatment decisions
The ability to provide support for self care and self management
The ability to work in multidisciplinary teams
The ability to use new technology to assist patients in becoming more engaged in their health and
The ability to manage time effectively to make all this possible

Question 11

Health and social care act 2012

Answer 11

“ no decision about me without me”
Applies to individual patient care
Applies to service development and change
Applies at local and national level
The act strengthens the collective voice of the patient

Question 12

Patients involvement in NHS planning

Answer 12

There is no consensus about what ‘public involvement’ means or involves beyond its contribution to service improvement
There is still a fundamental difference within local health economies between those who value involvement work and those who remain sceptical about it
Professionals may consider public involvement to be too compromised by the lack of representation or knowledge of users or too risky because of the vulnerability of users

Question 13

Healthwatch

Answer 13

The act provides for the establishment of healthwatch England
In addition there will be local health watch organisations
Practice patient involvement groups
Lay members/advisors

Question 14

NHS England 2023 working in partnership with people and communities: statuatory guidance

Answer 14

• centre decisions making and governance around the voices of people and communities
  -involve people and communities at every stage and feed back to them about how it has influenced activities and decisions
  -understand your community’s needs, experiences, ideas and aspirations for health and care using engagement to find out if change is working
  -build relationships based on trust especially with marginalised groups and those affected by health inequalities
  -work with healthwatch and the voluntary community and social enterprise sector
  -provide clear and accessible public info
  -use community centred approaches that empower people and communities making connections to what works already
  -have a range of ways for people and communities to take part in health and care services
  -tackle system priorities and service reconfiguration in partnership with people and communities
  -learn from what works and build on the assets of all health and care partners- networks, relationships and activity in local places

Question 15

NHS England, ICBs, NHS trusts and NHS foundation trusts are subject to the new ‘triple aim’ duty in the health and care act 2022

Answer 15

This requires these bodies to have regard to ‘all likely effects’ of their decisions in relation to three areas:
-health and wellbeing for people including its effects in relation to inequalities
-quality of health services for all individuals including the effects of inequalities in relation to the benefits that people can obtain from those services
-the sustainable use of NHS resources

Question 16

Defining care

Answer 16

Care as a set of tasks: includes help with personal hygiene (bathing etc), continence management, help with eating, help with mobility, advice, personal assistance (eg getting in and out of bed), shopping etc
Care as an emotional commitment: traditional association of care with love and concern
Emotional commitment may be essential for the effective delivery of care tasks

Question 17

Defining carer

Answer 17

Designates a person who provides long term help to a disabled person, usually a member of their immediate family. Legal recognition in invalid care allowance in 1975. Initially excluded married and cohabiting women, leading to a political campaign by the association of carers in 1981
‘Carer’ later extended to include social care staff (ie staff who were not qualified social workers) who worked with disabled people in residential and day care services

Question 18

Current usage

Answer 18

Common now to distinguish ‘family carers’ from ‘ paid carers’ or ‘staff carers’. But family carers can be paid receive carers allowance or manage social security payments (such as attendance allowance) received by the disabled person for whom they care
The terms ‘formal’ and ‘informal care’ are therefore also used in the UK, with the latter term including family and friends. Note that ‘informal care’ may be highly-organised

Question 19

Care providers

Answer 19

Families and friends of disabled people
NHS No. ‘health’ v ‘social’ care divide
Local authorities: provide residential, day and domiciliary care. Means tested charges for services (and growth of direct payments and individual budgets)
Charities: similar range of services as local authorities, but often more specialised
Private sector: especially in nursing and residential homes

Question 20

Staff carers

Answer 20

Social care providers in England
Adult care/nursing home
Domiciliary care agencies
Paid personal care assistants

Question 21

Problems with staff care

Answer 21

Concern with instances of abuse and neglect by paid carers
System of abuse in contracting system which forces down expenditure, leading to poor pay, difficulty in recruiting suitable staff, unfilled vacancies
Accountability

Question 22

Examples of care dilemmas

Answer 22

Treating a person with a severe cognitive impairment as an autonomous adult versus the need to ensure they receive basic nursing and personal care essential for their health and survival
Allowing people to take risks versus the need to protect from exploitation and danger (eg in sexual relationships)
Allowing people to make choices versus the need to protect them form the consequences of a poor diet, excessive alcohol consumption or smoking

Question 23

Problems with the term ‘carer’

Answer 23

Many families say the help and support they give to the disabled person is part of the ordinary obligations and activities of family life. The words ‘mother’, ‘father’ etc convey more meaning and prestige than the government assigned terms carer
Support within families is reciprocal ie the disabled person may be giving as well as receiving care. Designating one person as carer may be misleading
The term carer suggests that disabled people are in permanent need of the attention of others and thus incapable of leading an independent life

Question 24

Care by spouses/partners

Answer 24

Feeling exposed and vulnerable, insufficient information
Changes in employment and income
Change in relationships and family responsibilities, eg from husband/wife to patient/carer
24 hour on call with limited personal resources to plan changes
Stress greatest in early stage of disability and towards the end of life, associated with numbers of hours engaged

Question 25

Impact on family life: caring for a child

Answer 25

Parents of disabled children are from all social classes but are more likely to be single parents and live in poverty
Caring for a disabled child is usually more time consuming and costly than for other children and hence can limit parental employment opportunities and subsequent retirement income
This can have a disproptionate effect on parents who have low incomes or who are members of ethnic minorities and hence restricted in accessing local health and social services

Question 26

Care of a disabled child- other impacts

Answer 26

Stigmatisation of parents as responsible for the creation of a disabled child
Stigmatising parents as neurotic as a consequence of their guilt in producing such a child
Analyses of the burden for families providing care for their disabled members and the impact on the income, quality of life and mental health of family members. ‘Disabled family’
Recognition that families are diverse, flexible and capable of adaptation to unforeseen events such as the birth of a disabled child and the care of a disabled adult

Question 27

Disclosure

Answer 27

The disclosure that their child is disabled is often mentioned by parents as a particularly difficult time, which in some cases is handled badly by professionals
There are still examples in which professionals assume that parents will not wish to keep their child. Yet there is evidence that the majority of parents will be satisfied is professionals are honest with them, give as much information as possible, speak to both parents and are sensitive to the individual needs of each family

Question 28

Impact on parental mental health

Answer 28

Common belief that having a disabled child is associated with poorer mental health among parents (eg Olshansky and ‘chronic sorrow’) many personal accounts of severe stress on parents, especially where the child has severe behavioural problems
Recent research with mothers of children with ID has found higher rates of common mental disorders (35% v 25%). Mothers of a child with learning disability more likely to worry about their child and report that their child’s problems had made them tired, 14% said their child’s difficulties had made their relationship with their spouse/partner ‘more strained’. But an equal number said that is had made their relationship stronger

Question 29

Impact of siblings

Answer 29

Belief that parents will not wish to keep a newborn disabled child based on assumption that this will have an adverse effect on the attention received by its siblings, with consequent results for their development. Limited research in this field but a meta-analysis of 25 studies by Rossiter and Sharpe 2001 found only minor effects on siblings of children with learning disability, mainly relating to levels of depression and anxiety. Not an argument for ignoring problems that may arise with siblings but neither does it justify the view that a whole family becomes disabled because its includes a child with disability
In many cases, siblings (as well as other relatives) can become involved in the ‘shared family business’ of supporting the disabled member of the family and helping him or her lead as normal life as possible

Question 30

As disabled children age

Answer 30

Families often resilient and adapt to needs of a disabled member. Type of adaptation will change as the disabled person ages. When their disabled child is still young, families usually aim to maintain as ordinary a family life as possible
As other siblings leave home and establish their own families, parents realise that their lives are distinctive in the sense that a dependent disabled child has become an adult who remains in the home and requires continued support. The departure of siblings from the home reduces the amount of support available to parents
Third of adults with learning disability live with elderly parents. Mutual interdependence common

Question 31

Planning for the future

Answer 31

As parents age or die, surviving members of the family face the need to either arrange a move to another family member to provide support to enable the disabled person to continue living in the family home (if this is still available) or arrange a move to residential care
Decision making involves facing the prospect of death and infirmity and many family do not make plans. Where both parents are alive, there is an assumption that the other would take over if one became infirm or died. But most lone elderly family carers are unwilling to plan
Reluctance to plan based on lack of confidence in residential care, sometimes based on previous experience

Question 32

Young carers

Answer 32

Varying estimates but, every child matters claims there are 150000 young carers in England. Usually support disabled parents, often for several hours/week. May involve personal care, domestic work or translating
Young carers can suffer social isolation from other members of their age group as well as less time for education and employment
Worry and stress common
Development of several local schemes to support young carers

Question 33

The 7 most commonly reported situations by GPs where its reasonable to consider the risk of elder abuse or neglect were seen as including:

Answer 33

-carers with problems of their own eg psychological, alcohol
-older people with dementia who are left alone all day
-older people in households where too much alcohol is drunk
-carers who get very angry about the burden of caring
-older people with dementia who are violent towards their carer
-carers who are unable to meet properly the needs for daily care of the older person
-older people living with adult with a severe personality disorder

Question 34

Official support for carers

Answer 34

Public policy to support family care is quite a recent development. Was a sharp divide between institutional care (which absorbed almost all funding) and unsupported family care
Growing recognition that institutional care usually followed a breakdown of family care, and that services to support the family carers could avoid or delay this outcome with the added advantage of being less costly than the alternative
National carers strategy 2008: carers at the heart of 21st century families and communities, is a 10 year cross- government strategy

Question 35

Current patterns of support

Answer 35

Financial support
Respite care
Domiciliary support
Social and psychological interventions
The National caring with confidence training programme

Question 36

Respite care for family carers

Answer 36

Respite care allows families to continue domestic routines, overcome social isolation and continue employment
Diverse range of respite services specific to particular disabilities include:
-daycare (day centres, adult training centres and sheltered work schemes)
-social clubs
-day hospitals
-overnight breaks and short holiday breaks for people with an intellectual disability

Question 37

Domiciliary support for family care

Answer 37

Domiciliary support has historically been targeted according to the extent of disability and the unavailability of alternative sources of help. The presence of a family carers (either in the home or visiting frequently) thus reduces the prospect of support such as meals on wheels, home helps etc
Caring about carers identified a need for domiciliary services to meet the need of carers, and followed the 1995 carer (recognition and services) act and subsequent legislation. These empowered family and other informal carers to have a formal assessment of their needs

Question 38

Family care and services

Answer 38

Conflicts of interests and differences of outlook between family carers, professionals and the disabled person may impede the delivery of effective support. Some services orientated towards client to exclusion of family carer
Service assign a low priority to certain groups, eg children’s services are oriented towards prevention of abuse, so that capable but stressed parents of disabled children not regarded as a priority

Question 39

Warrior carers

Answer 39

Results is that substantial numbers of family carers do not receive the help they need. De facto blockage (eg statementing, care assessments)
Result is that access to services often depends on family carers skill in acting as an advocate (warrior carers) those who are less able to perform this role may fail to gain access to services. Tend to be those with less education, literacy, time (because consumed by care task). Lead to inverse care law

Question 40

Equality act 2010

Answer 40

From the 1st October 2010 millions of carers gained new rights under the equality act 2010
This means that carers cannot be directly discriminated against or harassed because they are caring for someone with a disability