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Informing
and deciding
A short break or respite care should be a positive experience for you and
your caregiver (if you have one). It improves your quality of life by
providing an opportunity to have a break from your usual routine. You make
a positive and informed decision about the break, helped by the quality
and accuracy of the information you receive.
Most breaks last from a few hours to a few weeks. Some breaks support you
if you have more complex needs, with longer planned breaks, or as an
introduction to independent living. The pattern of breaks may change to
allow for your changing needs. While most breaks are planned, emergency
care is sometimes needed, and standards reflect this. This may be the case
if the short break relates to family stress or illness rather than
long-term disability.
You must have proper information to help you reach a decision. You can
expect it to be up to date and reliable, in a format and language that you
can easily understand and keep. Information about the services should be
backed up by details that give you confidence that the break will meet
your support and care needs.
First meetings
Being able to meet a representative of the service, or to visit the
accommodation or to have someone visit you, is essential to making a
positive choice about using the service. You may sometimes want your
family, caregiver, friends or representatives to be able to be involved in
these meetings as part of helping you to decide. You can expect that the
people who will be giving you support and care will respect your need to
have enough time to make a decision.
Positive experiences
Whatever the nature of your break, you can expect to enjoy a range of
positive experiences. For example, if the break is away from your own home
it will accommodate you and any equipment you need in a way which supports
your right to privacy and dignity. If the break is in a care home with
permanent residents, the standards will be carefully applied to make sure
that your rights and choices and those of the permanent residents are
respected and that the experiences in both cases are positive.
Your wellbeing and safety are most important in whatever environment you
are in.
Management and staffing arrangements
You must be confident that the service is managed properly and gives those
providing it the support and training they need to provide good quality
care, in line with relevant legislation and guidelines.
You must also feel confident that the respite care you receive is tailored
to fit your individual needs and those of your caregiver. An 'individual
agreement' records your hopes of the service and your needs, and how the
provider will meet these. You can expect that, with your permission, those
providing your care and support will know all the relevant aspects of the
agreement. You can also expect to be able to discuss your needs with your
care manager and service provider beforehand.
Informing and deciding
Standard 1
You have all the information you need, in a format that you can easily
understand, to help you decide about taking a short break or using respite
care.
1. You receive advice and support to make sure that the information
reflects your own situation and need.
2. Your caregiver's need for information, advice and support will be
respected and responded to.
3. You have unbiased information about the possible benefits or
disadvantages of a short break or respite service. Your caregiver's needs
are taken into account when considering the possible benefits of the
service.
4. You and your family, caregiver or representative can discuss your
choice of service with staff from the short breaks and respite care
service.
5. You have detailed information about the service in a language and
format that you can easily understand. The information covers:
-
the aims of
the service;
-
the kind of
service it provides;
-
the cultural
needs it caters for;
-
the basic cost
of the service and the likely charge to you;
-
your rights
and responsibilities as someone who uses the service;
-
insurance
cover for you and your belongings;
-
risk
assessment procedures;
-
arrangements
that need to be made if the service closes or if there is a change of
ownership; and
-
the complaints
procedure and how to use it.
6. Where the
short break and respite service includes an overnight stay away from your
own home, your information includes:
-
living
arrangements and lifestyle;
-
the physical
layout and design of the accommodation;
-
details of the
accommodation, including the number and type of rooms;
-
visiting
arrangements;
-
personal
belongings (including pets);
-
any
restrictions on smoking and alcohol;
-
policies and
procedures about the possession of unauthorized alcohol or drugs during
your stay; and
-
arrangements
with local health and social work services.
First
meetings
Standard 2
You can visit or be visited by a representative of the services which you
feel might be suitable and discuss your needs before making any choice.
1. You can meet a representative of the short break or respite care
service at least once, to help you reach a decision about the service at
your own pace.
2. If you want, family members, friends or your independent advocate
(representative) may be involved in these visits.
3. If the break is to be in your own home you can meet the person who will
provide your care, to discuss your needs.
Your legal rights
Standard 3
You can be confident that the service has written policies and practices
(for example, on data protection and health and safety) covering the key
areas for standards for short breaks services. These are updated in line
with legislation and policy developments.
1. You have a written signed agreement ('individual agreement') with the
service provider which defines how the service will provide for your
needs.
2. You have a copy of this written agreement in a format you can
understand.
3. If your short break is in a care home, you have full information on
your legal position about your occupancy rights in the care home. This
will include:
-
the terms and
conditions of accommodation and residence;
-
payment
arrangements; and
-
arrangements
for changing or ending the agreement.
4. You can ask
for, and be given, a full list of the service provider's policies and
procedures which show how it complies with all relevant legislation
guidance and standards relating to fire, health and safety procedures and
risk management.
Positive experiences
Standard 4
You can expect to enjoy a range of positive experiences during your short
break or respite.
1. You know that the service ensures your wellbeing and safety, whatever
setting you are in.
2. If the break is away from your own home, the environment will
accommodate you and any equipment you need in a way which supports your
right to privacy and dignity.
3. If the service is provided in a care home you can be confident that you
will be staying in a comfortable and homely environment and that the care
home meets the standards for environment for care home services.
4. If the break is away from your own home, your views, and those of your
caregiver or representative, about your room, will be listened to.
5. Where the service is provided alongside facilities for long-term care,
there is separate accommodation for people using respite care. The people
using the service will be of a similar age to yourself.
Management and staffing arrangements
Standard 5
You experience good quality support and care. This is provided by
management and staff whose training and expertise allows them to meet your
needs. The service operates in line with all applicable legal requirements
and best-practice guidelines.
1. You know that those providing your care and support are actively
encouraged to take part in training.
2. You know that those providing your care and support have public
liability insurance and appropriate car insurance.
3. You can be confident that those providing your care and support are
supported at all times by skilled and experienced professionals who have
the time to do so.
4. You know that those providing your care and support are all recruited
and selected through a process which includes:
-
taking up
references;
-
criminal
records checks, where appropriate; and
-
cross-reference to the registers of the Scottish Social Services Council,
UKCC or other professional organizations, where appropriate.
5. You can be
confident that those providing your care and support are trained and
supported to meet your needs without damaging your health or theirs.
6. You are supported by sufficient staff who will help you in your agreed
activities without unreasonable risk to yourself or others.
7. You can be assured that the service has policies and procedures which
cover all legal requirements, including:
-
staff and
training;
-
administration
of medication;
-
health and
safety;
-
'whistle-blowing';
-
environmental
health;
-
fire safety;
-
managing risk;
and
-
proper
record-keeping, including recording accidents, incidents and complaints.
8. You can be
confident that staff know how to put these policies and procedures into
practice. They have regular training to review this and to learn about new
guidance.
9. You can be confident that those providing your care and support will
not use restraint at all unless it is permitted by law and even then,
restraint will not be used until other interventions have failed. If you
are ever restrained, this will be recorded and you can expect to be
supported after any episode of restraint.
Individual agreement
Standard 7
As far as possible, the individual agreement covers your own and your
caregiver's wishes of the service and what is to be provided. It records
an assessment of your needs that is carried out by the provider. The
agreement is in a language and format that you can easily understand.
1. The individual agreement includes:
-
a record of
the agreed service, including what the service is, how long it will last,
how often it is provided, its purpose and cost;
-
a record of
your hopes and your caregiver's hopes of the service and how the provider
will meet them;
-
arrangements
for reviewing the service being provided;
-
what you
prefer to be called;
-
a record of
your individual choices and preferences, including social and recreational
activities;
-
for a break
away from your own home, a record of your preferred accommodation;
-
your personal
care needs;
-
your food
preference and any special dietary needs;
-
the management
of medication and any other medical procedures;
-
cultural,
faith, religious and spiritual needs;
-
risk-taking;
-
contact
details; and
-
procedures to
be used in emergencies.
2. You can
meet a member of staff to discuss your needs before agreeing any service.
With your permission, information will be made available to the provider
to help them decide if they can respond to your needs.
3. You can invite anyone you want to support you in making your needs
known.
4. Your caregiver or representative can contribute to any discussions
about your needs in relation to what the service can offer.
5. You have your wishes listened to, and respected, over the purpose of
the short break service. The needs and wishes of your caregiver or
representative are taken into account.
6. You can be confident that the service provider records the views of
your caregiver or representative separately and considers them when
finalizing details of the service that will be provided.
7. If your views and those of your caregiver about the delivery of the
service are different, you will both be helped to reach an acceptable
compromise.
8. You know that the individual agreement takes account of the other
services that are provided as part of your care package.
9. A copy of your individual agreement is given to you, and also to your
caregiver or representative if necessary, and with your permission.
Introduction to standards 7 to 18
Short breaks and respite care should provide a positive experience for you
and a break for caregivers from the main caring tasks. This positive
aspect should be evident, even when the break takes place in an emergency.
Starting to use the service - making choices
Those providing your care and support will know why the service has been
provided for you and your caregiver. They will be able to talk to you
about any worries that either of you may have when you start to use the
service and the choices and decisions to be made.
Feeling safe and secure
You have the right to feel safe and secure during your short break or
respite care. You will be able to choose the risks you want to take in the
same way as you usually do, as long as there is a sensible balance between
your needs and preferences and those of others.
Exercising your rights - expressing your views
The service provider must always respect and actively promote your rights
as a citizen. Using the service, you keep your human rights and you also
have a responsibility not to infringe the rights of others. The provider
must take seriously your comments, concerns and complaints about the
quality of the service and your experience of it. They are your way of
contributing to and influencing how the service is run.
Lifestyle - social, cultural and religious belief or faith
The standards in this section make it clear that you can continue to live
your life in line with your own social, cultural or religious beliefs or
faith.
Eating well and keeping well
Good, nutritious food and drink are important in keeping and improving
your health. Individual choices of food and drink vary, as do dietary
needs. Having your own needs and choices met is an important part of the
quality of day-to-day life. Keeping healthy or regaining your health are
important to your wellbeing and quality of life. You have a right to have
your health needs met and to have support in using the full range of
healthcare services. You also have a right to have your medication
arranged efficiently and safely if you want this.
Private life and daily life
In the short break or respite care, you continue to have the right to a
private life. Your individual agreement will let the service know what
activities and interests you have and how to help you to stay involved in
these or develop new interests.
Supporting communication
People may use different languages or methods of communication for a
variety of reasons. As a result, they may have difficulty in making
themselves understood. However, being able to communicate is essential in
playing an active part in daily life and you should get help to do so if
you need it.
Starting to use the service
Standard 7
You are welcomed by those providing your care and support and are clear
about who will help and support you.
1. You have a named member of the service providing your short break who
will co-ordinate your individual agreement, monitor its progress and stay
in regular contact with you and everyone involved.
2. You can discuss your needs at all reasonable times with that person.
3. If you are not certain about whether the service is right for you, you
can speak to those providing your care and support to help you with your
final decision.
4. If you have to move into respite care because of an emergency or
crisis:
-
every effort
will be made to meet your preferred option before the service starts. The
needs and wishes of your caregiver or representative will be taken into
account when agreeing the service that will be provided;
-
where
information relating to your care needs is not available, a full
assessment of need will take place within 72 hours of you taking up the
service. Your caregiver or representative may be able to take part in the
assessment;
-
the provider
and your care manager will keep in touch to make sure that the service
suits your needs;
-
the provider
will help you keep up to date about the crisis and how it may affect how
long you stay;
-
within 24
hours, you will meet a member of the provider's staff to discuss the
service in more detail and your caregiver or representative will be kept
fully informed about your care, unless otherwise specified; and
-
the provider
will recognize any needs you may have as a result of the emergency
placement.
Making
choices
Standard 8
You can take part in deciding what the service will provide to meet your
assessed
needs.
1. You can contribute to the way the service is delivered, according to
your skills and interests.
2. Your caregiver and/or representative has the same opportunities to
contribute to the way the service is delivered.
3. Your caregiver and/or representative may be involved in making
decisions if you want them to and if you cannot express your preferences.
4. Your individual agreement reflects your individual choices and
preferences. If it is not possible to provide for your preferences, the
reasons will be discussed with you and the outcome recorded.
5. You can choose whether you want to keep control of your personal
affairs during your short break. You can get help with your financial
arrangements if you need it.
Feeling safe and secure
Standard 9
You feel safe, secure and comfortable in the environment where the service
is provided. Your right to be able to take reasonable risks is also
respected.
1. You choose how you spend your time, depending on your own health and
wellbeing and risk assessment. The provider may ask your caregiver and/or
representative for their views.
2. If the short break is in the home of another family (as in family-based
respite), a risk assessment of the living arrangements will have been
carried out and any recommendations will be followed.
3. Your caregiver or representative is kept fully informed of any accident
or incident that happens during the short break or respite care.
4. You can be confident that you will be in an environment that is free
from bullying, harassment, discrimination and any other form of abuse.
5. In a short break away from home, you know that:
-
your living
environment is safe and secure;
-
you can safely
store your personal belongings in your room;
-
all equipment
that is used to help you in your daily life will be regularly serviced and
maintained;
-
you are kept
informed of all emergency procedures in a way that is suited to your
needs;
-
your caregiver
or representative is asked about any special needs you may have which need
to be considered in an emergency;
-
your personal
belongings will be used only by you unless you want to share their use and
have given your permission. Only you use your clothing and you are not
expected to wear other people's clothes; and
-
staff will
make sure that your clothing and personal belongings are clearly marked.
Exercising
your rights
Standard 10
You keep your rights as an individual.
1. You are confident that staff will treat you politely at all times and
always respect your individuality.
2. You are called by your preferred name or title at all times by staff.
3. If you need help, your request will be dealt with as soon as possible.
4. Confidential information about you is only shared with others if you
give permission.
5. If any information cannot be kept confidential, you will be told why
and who has the right to see it.
6. You can be sure that your confidential records are held securely.
7. You have access to any information or records held about you unless
there are confidentiality policies or legislation that prevent this.
8. You can challenge any information held about you which you feel is
misleading and which may affect the service provided.
9. You can be supported to retain your civil rights (for instance, voting
in an election).
Expressing your views
Standard 11
You are encouraged and supported to make known your views on any aspects
of the service.
1. You can freely discuss any concerns you have with those providing your
care and support or the appropriate member of staff or management.
2. You know how to make a complaint or comment about the service. You are
also aware of the procedure for making complaints directly to the Care
Commission.
3. You are not penalized in any way by the service if you have made a
complaint. You do not have to give your name when you make a complaint if
you do not want to.
4. Your caregiver or representative has an equal opportunity to make his
or her views about the service known and can receive support to do so, if
necessary.
5. The provider deals with concerns and complaints quickly and
sympathetically, and provides full information about what happens as a
result.
6. You are encouraged and supported to use an independent and confidential
advocacy service that can act for you, if you want to.
7. If you have an independent advocate (representative), staff will listen
to what he or she has to say on your behalf, as if you were expressing the
views yourself. They will take seriously any suggestions or proposals
resulting from you using an advocate.
8. You can play a part in the Care Commission's inspection of your
service, if you want to.
9. The manager of the short breaks and respite service will give you a
copy of the most recent Care Commission inspection report about the
service, so that you and your representative can look through it in your
own time.
Lifestyle - social, cultural and religious belief or faith
Standard 12
Your social, cultural and religious beliefs or faith are known and
respected. You are able to live your life in keeping with these beliefs.
1. Those providing your care and support will be properly informed about
the implications for you of your social, cultural and religious belief or
faith.
2. You are given the opportunity and support you may need to practice your
beliefs, including keeping in touch with your faith community.
3. Your holy days and festivals, birthdays and personal anniversaries are
recognized and ways found to make sure you can observe these as you
choose.
4. Your routines, preferences and any cultural needs relating to your
personal care will be respected, for example, the way you look after your
skin and hair.
Eating well
Standard 13
Your meals are varied and nutritious. They reflect your food preferences
and any special dietary needs. They are well prepared and cooked and
attractively presented.
1. You can be confident that those providing your care and support will
make sure that your meals reflect your choices and preferences, including
ethnic, cultural and faith ones, and take account of any special dietary
needs (for example, if you are a vegetarian or have diabetes).
2. You can be confident that your meals are well prepared and well
presented and that all food handling follows good food hygiene practices.
3. You must be able to eat and enjoy your food and drink. If you need any
help at mealtimes (for example, adapted cutlery or crockery, a liquidized
diet or help from your those providing your care and support or care
staff), the service will arrange this for you.
4. Those providing your care and support will note anything that may
affect your ability to eat or drink, such as your dental health. If there
are concerns, they will support you to get advice and help if you want.
5. If you are unable to say if you are getting enough to eat or drink,
those providing your care and support will keep an eye on this for you if
you want them to. If there are concerns, they will explain them to you or
your representative. With your agreement, they will take any action
needed, such as seeking advice from a dietician or your GP.
6. If your short break takes place away from your home, you are free to
eat your meals wherever you like, for example in your own room or in the
dining room. You can eat them in your own time and you can have snacks and
hot and cold drinks whenever you like.
Keeping well - healthcare
Standard 14
You can be confident that the service knows your healthcare needs and
arrangements are in place to meet them in a way that suits you best.
1. You continue to be registered with your usual GP and dentist. If this
is not possible, arrangements will be made in advance for you to be
registered as a temporary resident with the GP and dentist of your choice
from those providing services in the area.
2. You can be confident that, if you were receiving healthcare services
(for example, attending hospital clinics, physiotherapy or counseling)
before your short break and you still need them, arrangements are made to
ensure that you continue with them.
3. You can expect those providing your care and support to be aware of
issues about the assessment and management of any symptoms you may have
and how to access any specialist services.
4. If you become ill or your health is not improving, you know that your
doctor or other relevant healthcare team member will be contacted, if you
cannot do so yourself.
Keeping well - medication
Standard 15
If you need to take medication, those providing your care and support know
this and there are arrangements in place for you to take your medication
safely and in the way that suits you best.
1. You can be confident that the service knows whether or not you are
taking medication and tells those providing your care and support about
this.
2. If your short break takes place away from home:
-
you can choose
whether to manage your own medication, unless there are specific legal
provisions applying to you that prevent this;
-
if you are
managing your own medication, you will be given your own safe place for
keeping it. If you need it, you will also have special storage somewhere
else (for example, in a fridge) that is accessible to you;
-
you can get
help with ordering and collecting any prescriptions you may need during
your short break;
-
if you have
your medication managed for you, you can be confident that the service has
comprehensive systems for ordering medication and for its safe storage and
administration, and for the safe disposal of unused medicines. Those
providing your care and support or care staff know about these systems and
follow them; and
-
if you are on
medication that someone else needs to administer (for example, an
injection), this will be arranged for you and will be given in a way that
recognizes and respects your dignity and privacy, as set out in your
individual agreement.
3. If you have
any questions about your medication which those providing your care and
support cannot answer, they will help you to get the advice from your
community pharmacist, GP or another member of the primary care team.
4. You can expect those providing your care and support to be aware of
issues around the assessment and management of any symptoms you may have,
including pain, and how to access any healthcare services if there are any
concerns.
5. You can be confident that those providing your care and support will
monitor your medication and the condition for which it has been
prescribed. If there are any changes or concerns about the medication or
the condition, they will get medical advice, if you agree.
6. If you are capable of understanding the need to take medication and
what will happen if you do not do so, but you refuse to take it, those
providing your care and support must respect your wishes.
7. You may not understand that you need to take medication and what will
happen if you do not do so. If so, there are legal powers2 that allow
other people to give permission for you to receive treatment, if it is
necessary for your health and welfare.
Private life
Standard 16
You have the right to a private life.
1. Your personal care needs are met in a way that respects and meets your
need for privacy.
2. If your short break takes place away from home and you need help to
meet your personal care needs, you can choose who helps you, depending on
which staff are available, your personal wellbeing, and health and safety
requirements.
3. Your wishes regarding personal space are respected wherever possible,
in line with the type of service provided and the physical space
available.
4. Those providing your care and support recognize that your sexuality,
sexual needs and preferences are important to you. They accept and support
your right to have intimate relationships that you have consented to if it
is legal to do so.
5. If your short break takes place away from home, you are consulted
beforehand about visits or visitors.
6. Your belongings are treated with respect.
7. Those providing your care and support in your own home will only go
into those parts of your home that you have given permission for, except
in exceptional circumstances.
Daily life
Standard 17
You make choices and decisions about day-to-day aspects of your short
break or respite care and about how you spend your time.
1. You receive information in a way that you can understand and that will
help you to follow your interests and chosen activities.
2. You can keep up relationships with family, friends, caregivers and
relatives and links with your own community. If you want to, you will be
supported to do so.
3. You have support in making the most of opportunities to meet other
people and develop new relationships or to take part in new activities if
you want to. Your caregiver's views may be considered when agreeing what
activities you can take part in. The individual agreement will record
them.
4. You have opportunities to take part in relaxation and activities which
are enjoyable and take account of your preferences, age, abilities and
culture.
5. You have help if you want it to keep up your personal appearance,
taking account of your preferences, age, comfort, fashion and culture.
6. You can be confident that, in a short break away from home, none of
your opportunities will be affected because you are only staying for a
short time.
7. You can be confident that, where the service provides transport, this
will be available to help you maintain your existing relationships and
activities.
Supporting communication
Standard 18
You have help to use services, aids and equipment for communication if
your first language is not English or if you have any other communication
needs.
1. You can be confident that communication support is available for you at
all times.
2. You have help to keep in touch with your family, caregiver and friends,
if you and your family, caregiver and friends want to.
3. You can communicate in whatever way you want, at any time and at your
own pace.
Adults with Incapacity Act 2000; Mental Health (Scotland) Act 1984
Introduction to standard 19
The short break or respite care may be part of an accepted routine of
breaks from living with your family or on your own. It may be a stepping
stone to greater independence. Whatever the reason, the support and care
you receive then should prepare you for moving on or going home again.
Ending the short break or respite care
Standard 19
You are involved in plenty of time in planning and discussing the best way
to prepare for you going home or moving on. The planning and discussion
involve your caregiver or representative (or both) and staff.
1. You know when and where your next short break will be. Your caregiver
and/ or representative also knows when it will be.
2. You can choose what information is shared with your caregiver or
representative. Where your ability to choose or communicate is impaired,
your caregiver or representative will learn about the short break on a
need-to-know basis only, to help them to respond when you return.
3. You can be confident that any requests from your caregiver or
representative for information on anything to do with your short break are
properly responded to. If there is anything in the organizational policies
and procedures which prevents them from receiving this information, this
will be made known to them.
4. You can be confident that the information that you take with you is
complete and has been collected with your involvement and agreement.
5. You are supported to keep in touch with any friends you have made, as
long as those involved all agree.
6. You take part in regular reviews of your respite care service to make
sure it continues to meet your needs. Any review considers the needs of
your caregiver or representative as well.
7. You can ask to alter the arrangements at any time during the agreed
period of service, unless doing so would harm you or put your health in
danger. The service provider will tell you (and your caregiver if
necessary) of any costs involved.
Reprinted with permission from St. Clements House, United Kingdom.
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If children live
with pity, they learn to feel sorry for themselves.
If children live with encouragement, they learn confidence.
From Children
Learn What They Live, Dorothy Law Nolte |
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