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Contents
Introduction
Is Respite Care Needed And When?
Where Should Respite Care Be Provided?
In What Sort Of Place Would People Like To Get Respite
Care?
What Should People Get Out Of A Respite Care Facility?
Other Forms Of Respite Care
Alternatives To Respite Care
How Is Respite Care Different To A Holiday?
Respite Care and Hospital
Respite Care In The Past
Should Respite Care Ever Be Provided In Hospital?
Should Respite Care Be Provided Only In A Mental Health
Setting Or With Other Client Groups?
Would Respite Care Help Prevent Hospital Admission And
Help People Cope In The Community?
Should People Pay For Respite Care?
Transport
Parents And Respite Care
Accessing Respite Care
What Is Respite Care Like Now?
Respite Care And People's Carers
Do Carers Need A Break And Why?
General Points About The Help Carers Need
How Do We Feel About Carers Needing A Break?
Conclusion
Key Points
Appendix 1 - Alternative Views About When Respite Is
and Isn't Needed
Appendix 2 - What Should People Get Out Of A Respite
Care Facility? Appendix 3 - What Should Happen
In Respite Care?
Acknowledgment
Introduction
Respite care has
traditionally been seen as a mechanism for giving carers a break from
looking after users, either by sending users to facilities that can
cater for their needs and providing carers with some time to themselves,
or by bringing in people to look after users in their own homes and
giving the carers the opportunity to get out for a while.
However, in HUG,
there is a feeling that many users also have their own needs for respite
care.
The subject of respite
care has been discussed in the network of HUG branches on two occasions;
once in the early days of HUG in 1997 and more recently in November
and December 2001. On both occasions the discussions took the form of
a series of informal questions and conversations with groups of members.
On the first occasion
we involved approximately 45 members and on the second 63 members participated.
We have only used the results of the second set of discussions and some
material sent to us by HUG members as the basis for this report. This
was because we wanted to make sure that any report was as up-to-date
as possible.
This report is a
reflection of the views of users of mental health services rather than
that of carers. Therefore this report has a value in being a reflection
of a relatively unknown perspective on many of the issues that carers
have talked about in the past.
When we first discussed
the subject in 1997 most members of HUG had not heard of respite as
a service and very few had had access to it. However people had frequently
talked of the need to find relief and refuge from the pressures of their
illnesses and home circumstances and the idea of respite had great appeal.
Over the intervening
years more and more people have experienced respite, especially at Catalina
House Nursing Home. Many people had become aware that respite care now
existed as a service for some people.
When looking at
the principles and ideas behind respite there was a lot of agreement
between the ideas expressed in 1997 and those of today. The idea of
being able to get a break, to escape for a while, to have somewhere
to pause and reflect in relative safety were still seen as very important.
Being able
to look forward to a planned break in the future gave hope to many people
and to be able to seek refuge when approaching crisis was seen as potentially
life saving by others.
The fact that people
now had to pay some of the costs of respite care caused concern among
HUG members, especially as respite used to be provided in hospital as
a free service and was now mainly available via Social Work funding
through a privately run facility.
Although members
could see that some forms of respite are mainly there to help carers
it became clear that this could be just as much a service to users and
that these distinctions sometimes blurred the issue: users can be carers
and vice versa. Both can be parents or partners and all can be in need
of a break either from each other or from the situation that they are
in.
Over the course
of the meetings it became clear that respite care should be a service
that was available to anyone with a mental illness and that it should
become a routine possibility when helping users plan their care. It
was seen as a service that could play a large part in preventing illness
and in promoting health and, as such, could play a positive and cost
effective part in helping people remain in, and build on, their lives
in the community.
Is Respite Care Needed and When?
Most HUG members
agreed that respite care was very important and that, in its different
forms, it should be a key component in the options for a person's care.
There were a number
of situations where it was needed:
1. To recover
from trauma. For instance, as a way of getting back on your feet
after an acute episode of illness or even after hospital admission.
2. To stop
a crisis that is building up from developing any further:
"In
the early stages - when you are getting symptoms as early warning
signs."
"We
need respite when we know that we need it. Social Work came on Tuesday
and I was in respite care by Wednesday - it was brilliant."
3. As a way
of maintaining and enhancing your ability to manage at home and in
the community:
"Respite
can be the difference between coping with illness or relapsing -
a relapse can put you right back where you started, while respite
recharges you and helps you face life. Ultimately it saves money"
"When
you get sick of being alone, you just need to escape - life has
become like a prison and your house has become like a prison."
"People
usually get such things in crisis but if you could plan for and
ask for it in time it could keep you going."
4. It is needed
as an experience in itself; a change of scenery and people improves
the quality of people's life:
"Just
a break from each other, when you can get away for quiet time to
think and reflect on the situation."
"There
is a need for a place to rest and also for a place with the structure
and the ability to motivate you."
5. It is needed
to give those around you a break so that they too can cope better.
"If
you are caring for someone you can get to your wits end and need
a break and out of the situation"
"People
can be trying to manage to look after their physical and mental
health, but end up in hospital because their carer can't cope."
"When
the whole family situation is becoming unmanageable, it is often
not one person who is mentally ill in the family it is many."
6. It is needed
when you are not acutely ill but can no longer manage:
"When
you can't get out of bed or attend an appointment."
"When
you are so unwell that you are mentally exhausted, when you can't
cope anymore, when you get physical symptoms of stress, when your
body is exhausted and when your mind is telling you to give up."
7. As an option
for people in distress but not "ill".
"When
you are in a crisis but don't have the good fortune to meet the
clinical criteria so that hospital is not an option."
8. It is needed
as a tool for change:
"
It can also be needed when you need a permanent change and need
to reflect in your own space, in order to make a decision that you
will be happy with."
"….This
could be helped even more if there was a period of follow up once
you left respite care."
9. To help
you with your own responsibilities (such as childcare):
"If
you are a single parent and under stress the only break you get
is when your children are at school. However if your kids are under
five you can get really stressed."
"Even
getting out for an evening can be really good. If you are not getting
out you can end up staring at the four walls, but somebody coming
in to baby sit can be great, otherwise you feel imprisoned"
It was also said
that respite care should be something that people want to receive,
not something they have to take.
KEY POINTS:
- Respite care
is an important part of a person's treatment.
- It can both
provide a break and recuperation, room for enjoyment and room to look
at a person's situation in safety.
Where Should Respite Care Be Provided?
There were a variety
of opinions about this, but the main theme that came out was that respite
should represent a complete change of environment away from the stresses
that people are experiencing.
"The
whole point is to get away from everyone including your carers; otherwise
there is no difference."
Most people would
want to be away from home and their community and in many cases their
family. There was a feeling that a few people might like to be fairly
near to home but that this was not the case for the majority.
"Some
people would like local respite but then you can end up feeling on
top of each other. People can feel obliged to visit and then the problem
is still there."
Most people suggested
that they would like to be in a peaceful, relaxing, quiet place away
from any hustle and bustle.
There were some
(and the impression was that these were mainly younger people) who yearned
to go somewhere lively and exhilarating and yet still safe. Perhaps
a purpose built facility in one of the central belt cities.
"Other
people want a more active break. They want to be able to go off and
do things, almost having a package of things and yet not feeling looked
after."
There was a suggestion
that some people will be in respite to learn how to manage their lives
better and that in these situations it would be good to have links with
the community that they come from.
KEY POINTS:
- Most people
would like a break to occur away from their usual environment. However
there needs to be some choice in the place a break occurs.
- Many people
would like a break to occur in a peaceful setting although there are
some that would benefit from a more dynamic environment.
In What Sort Of Place Would People Like To Get Respite
Care ?
Again the emphasis
for most people was a relaxing, attractive and peaceful homely place:
People suggested:
- A converted
farmhouse.
- A small guesthouse
with a sympathetic landlady (or a hotel.)
- A nursing home.
- Existing facilities
such as Catalina House or the hospital.
- A residential
caravan that could be booked as and when needed by people who use
community facilities.
- It could be
a dedicated facility - perhaps tied into other resources such as
'places of safety' or drop in centres.
"It
should be quiet and away from the public gaze."
What Should People Get Out Of A Respite Care Facility?
There were two main
themes to this:
1. Respite, for
some people, should be purely a place of relaxation and recuperation,
something that they can look forward to and enjoy.
2. Respite for
other people should be seen as an opportunity to take time out, with
support, to look at their lives and home environment and develop the
capacity, skills or confidence to cope with it better on their return.
"Something
like a rehab programme without the breakdown."
The point was made
that many people with mental illness end up on "maintenance"
doses of medication as part of their treatment. People were keen that
therapies such as respite care should also be seen as "maintenance"
treatments and as a valued part of a person's care.
For a list of the
main things people wanted to get out of a respite care facility see
Appendix 2.
KEY POINTS
- Respite care
involves four main elements
- Refuge and
relaxation
- Something
to look forward to
- Having things
to do and enjoy
- Having time
to reflect and learn
- What Should
Happen In Respite Care?
Again the main emphasis
was on peace and tranquillity. Many people wanted to do very little
except to relax and unwind and be looked after. However, a significant
number of people were looking for therapy or activity where they could
both examine their lives and explore new ways of coping or find enjoyable
activities to do or ways of recharging.
A point was made
that a respite care facility could be similar to a hospital except that
there were less medical criteria for admission and that it is used before
things get too bad.
And on a similar
theme:
"It
should be different to a hospital. It should be jollier, there should
be more chances to join in, there should be more leisure activities
and it should be more like one of the drop in centres.
It
should be a place to go to do things when you are still happy enough
to do them."
For a list of the
main things people wanted to happen in respite care see Appendix 3.
KEY POINT
- Respite care
can help people get back on track through experiencing positive activities
in a setting in which they are relaxed and open to change.
Other Forms Of Respite Care
The previous descriptions
have mainly referred to respite care provided with staff in a place
designed for that purpose. However, although the principles of what
people were wanting remain the same, there were other different ideas
suggested that would give people a break.
These were:
Holidays
Many people were very clear that a break in a nursing home or hospital
provided much less enjoyment, much more stress and much less benefit
than if they were able to spend some time as a family on holiday. It
would be, and is, hugely therapeutic for some people and far less costly
than the inevitable hospital admissions that people endure when they
do not have access to any form of break.
"Lots
of people need a break. Getting a break in a 'normal' place could
be as good or better than a specialist facility. If you had to go
to a specialist facility for respite care you could be nervous that
you weren't getting a real break."
"If
you are able to work then you can get a holiday, but if you are on
benefits then you are living from day to day and a holiday is not
possible."
"To
get away, a chance to be whole and to stabilise is very cost effective
ultimately. They should subsidise these things because the majority
of us can't afford holidays. Not everyone wants to go to a nursing
home. People often want to get away and do something that they really
enjoy"
"Where
should respite occur? The South of France! Wherever suits you - it
depends on your likes, dislikes and hobbies."
KEY POINT
- Respite care
does not always have to be a specialised service. A holiday can fulfill
this function for some people.
Supported Holidays
Many people are not well enough to take holidays. However groups of
users have visited other drop in centres or been on trips and holidays.
"
A holiday can be hard to cope with. If we had a group of people who
could support each other and maybe some staff too, then people could
get away for a break. Just to be able to achieve this would provide
a break and increase confidence in itself."
"People
need to get away from their usual environment. Simple things like
visits between drop in centres. Respite should be something to look
forward to - it should be something different. It should be a chance
to meet people in similar situations."
KEY POINT
- Many people
can benefit from a break - some people need support to do so.
Daily Respite
Many people said that the facilities that they use in the daytime
give them a break and provide support as well as giving reassurance
to carers:
"Places
like the Training & Guidance Unit (TAG) where you can offer each
other support, even if only in the short term, are very useful. They
help with daily respite care."
"Coming
to places like the Gardeners Cottage gives our carers and relatives
a break and it also gives us a break."
"Being
with other people with a mental illness is very good. It helps in
itself and is healing in itself - being with each other and sharing
problems and experiences."
"People
'on the outside' can't always see how being together can help and
can try to stop us mixing as it seems so negative to them."
KEY POINT
- Respite can
be provided through people's use of other facilities.
A Cheap Facility To Stay In
There was a feeling that different organisations or groups of users
could share the cost of cheap places to stay, like a guesthouse or a
caravan, to give breaks to those that can manage such things but without
the cost of a major holiday.
Short Term Respite
Some people, especially those with other disabilities or with dependents
and who may also be either users or carers or both talked about the
need to have short breaks at home. The chance to get out in an evening
to meet friends or have a drink were incalculable to some people. If
this was combined with practical help in the home the benefits were
huge.
"Respite
is not just a break. Things like getting home care when you can't
manage is just as important … the combination of practical assistance
and a chance to recharge is just as important"
"The
more services like 'Crossroads' are recognised, the less stigma there
will be about getting respite. We need people to become aware of the
need for respite."
Equally there can
be problems with getting people in to help:
"Getting
totally away can be the solution but it can be impossible to afford.
Even baby sitting can be difficult to afford or arrange - you need
someone who knows your child and what they are like."
"What
if you get a carer in to help and you don't like the carer?"
And if respite is
withdrawn:
"You
can hit rock bottom - it can be so dangerous - you are living close
to the edge and then the respite goes. Withdrawing it can send you doolally."
There was a feeling
that this sort of short break (mainly for carers) was especially important
where a person was very ill and needing constant care and support.
"If
you are looking after someone 24-hours a day then it would be great
to go out in the evening and know there is support."
"One
form of respite for carers when we are ill would be 'person sitters',
a form of companionship for users that would allow carers a break,
similar to the help Crossroads gives."
It was also something
that would apply to parents with a mental illness who were struggling
to look after their children.
KEY POINT
- Some people,
especially carers,(who may also be users) can and do benefit from
short breaks provided at home.
Alternatives
To Respite Care
There was also a
feeling that the need for respite would be reduced greatly if we had
the confidence to make friends and to go out into mainstream life ourselves.
Courses that would:
- build confidence
- help with
everyday situations
- help with
life skills
- help us face
difficulties in life in safety
- help us to
regain the ability to have fun
would all reduce
the need for respite care and enhance our ability to engage with life.
KEY POINTS
- Respite is
not the only way in which people can regain the confidence to live
a quality life in the community.
- It has to
be seen in conjunction with a range of community support options.
How Is Respite Care Different To A Holiday?
Many people thought
that holidays could be as therapeutic as conventional respite care and
that people should be supported to go on them:
"[Holidays
and respite] are exactly the same thing."
"If
it were possible, a proper holiday would be ideal for some people."
However, we also
felt that it was important to make a distinction between the respite
that a person may get as a service and a conventional holiday. The main
distinction was to do with illness:
"You
would generally get respite when you are unwell. You don't go on holiday
when you are unwell"
"If
I went on holiday I couldn't manage because of the likelihood of things
going wrong"
It is also a service
where people receive support and back-up of a kind that they wouldn't
get on holiday.
"Respite
is much more about support and space and safety. In the situation
where you need respite you couldn't manage a holiday - you need something
specialised with psychiatric support."
"A
holiday can be very stressful. Respite would be a break or holiday
without the pressure."
KEY POINT
- For some people
respite care and a holiday are the same. However, for other people
there is little similarity - respite is a form of treatment and support.
Respite Care and Hospital
What Is The Difference
Between Respite Care And A Hospital Admission?
In some circumstances
the difference between an admission to hospital and getting respite
care can be blurred. This is especially so when people feel that they
are in crisis. There was a call for clear differentiation between the
two options. A small number of users had ended up in respite care when
they had thought they were being assessed for admission to hospital
and had felt very confused and angry when they realised that they had
to contribute to the cost of their stay.
Generally people
thought that respite was a facility to be used when people were a little
better. It was something which people could build on and use to keep
going. The difference was partly symbolic:
"Respite
is for when people are going up - it prevents hospitalisation or getting
worse."
"Hospital
care for many is not an option - it can make you much worse. Hospital
can make you fit into the role of illness and then escalate the problem."
"Where
you get help can dictate or influence how you react or respond."
"It
is important to get away. Hospital is not always appropriate - it
can make you tense up."
KEY POINTS
- There needs
to be clarity about when a person will be admitted to hospital and
when it is more appropriate to admit them to a respite facility.
- Respite is
more about promoting health than dealing with illness.
Respite Care In The Past
Until a few years before the closure of Craig Dunain a number of
people received regular respite breaks there. However this no longer
appears to happen in the new hospital, New Craigs. In the recent meetings
of HUG the effect of this was spoken about.
Although nowadays
the majority of people would not want respite in hospital as a first
choice, the people who did get it there in the past greatly appreciated
it. The patients who received respite in hospital were mainly people
who had been ill for a number of years. They found it very hard to cope
in the community. The respite with a degree of support and back-up kept
them going - it helped them feel refreshed and able to cope:
"It
was a good place, you were not put under pressure, the staff were
excellent - there was freedom there, it gave a rest and was like a
mini holiday. There was enough care and enough support, you didn't
have to do anything at all, you knew everyone and it was familiar
and safe."
People felt that
the effect of withdrawing the respite in hospital was that this particular
group of people got into crisis much more frequently nowadays. They
were admitted to hospital as emergencies more frequently and remained
ill and distressed for longer.
"It
used to be a part of your treatment. It was a load taken off you.
People staying in the community couldn't always manage, but this maintained
people's health by being planned at regular intervals."
Should Respite Care Ever Be Provided In Hospital?
Some people thought that hospitalisation should be an option for people
needing respite care, especially where it is being used as a response
to a person who is clearly becoming more and more ill.
"It
depends on how bad you're feeling and how desperate you are. Hospital
is an option when you are very close to being admitted anyway."
For some people
hospital was a place of safety and familiarity and remains such a
place. For them, respite in hospital would be the preferred choice.
However, for the majority of people hospital can be a busy and traumatic
place where the calm and peace that respite should give will not be
achieved.
"We need a place for quietness, which
you don't get in hospital or at home."
"You
can just want to get out of the situation, to hold onto something
that you enjoy. This is not helped by being shut up in New Craigs"
"It
would be scary to get respite (in hospital)"
"Even
going into hospital can be a break. Away from knowing friends and
family. Alone and away from everyone that knows you - away from their
expectations."
KEY POINT
- Respite care
is sometimes best provided in a hospital setting but should generally
be provided away from hospital.
Should
Respite Care Be Provided Only In A Mental Health Setting Or With Other
Client Groups?
Most people felt
that although we could learn from people with different disabilities,
when we are getting respite it should be amongst our own "community",
people whom we know will understand what we are going through.
KEY POINT
- Respite care
should be provided in facilities dedicated to the needs of people
with a mental illness.
Would Respite Care Help Prevent Hospital Admission
And Help People Cope In The Community?
Although this would
not be its only objective most people felt that properly planned respite
care could stop later admissions to hospital. As part of a range of
community packages it should help people manage their lives better in
the community. However people were also keen to say that:
"Respite
care is a good idea if only because it reduces human unhappiness."
KEY POINT
- Respite care
may be able to reduce hospital admissions and enhance a person's ability
to cope in the community.
Should People Pay For Respite Care?
In the past many
people received respite care in hospital without charge. The fact that
people have to contribute to the cost of respite care has caused a great
deal of anger. However, there were two main themes to people's discussions
on this subject.
Many people said that paying for respite care or contributing towards
its cost was wrong. This was because they and their partners or carers
couldn't afford it. Many of their costs at home continued when they
were receiving respite care. The worry about money and the lack of money
for any form of "treat" when in respite care all made it less
of a positive experience than it could have been.
"Having
to pay a lot of money for respite care misses the point of it. If
you have to pay for respite as well as cope with the costs that continue
at home, then the relaxation and peace that you can get disappears.
You can spend more time worrying about your bills and more time worrying
about costs within the centre."
"For
some people on low benefits it would be impossible for them to afford
respite care, only those that are relatively better off can afford
it."
The other reason
was because people saw it as an essential part of their treatment plan.
They felt that in a country with a welfare benefits system and a free
health service, the practice of contributing to the cost of respite
care (which most people thought was principally a service to maintain
health) could not be justified.
"A
psychiatrist said that I needed respite. If instead he had said that
I needed hospital then I would have got it for nothing."
"You
need to know you will have money. If respite is to work you need money.
People should be able to get tobacco and the occasional pint."
There were, however,
many people who thought that a token contribution that did not cause
hardship was justified. It symbolised a commitment to the process and
encouraged people to get the maximum benefit that they could out of
their stay.
"People
don't mind contributing but they shouldn't suffer because of this."
Some people thought
that if people were getting respite care, and that they had an income
above the income of people on benefits, then a charge would be justified.
When we were discussing
holidays as a form of respite most people could see the point of contributing
to this (although they pointed out the need for some financial assistance
as many people did not have the resources to pay for a break entirely
out of their benefits.) However, people do need to know in advance if
they will have to contribute to the cost of respite care and care needs
to be taken to ensure that the person is in a fit state of mind to take
in this information.
A point was made
that people were only entitled to subsidised respite care for four weeks
in the year. This caused considerable anxiety for some people who felt
that this did not reflect the intensity of the need that they had for
breaks from their home environment:
"You
are only allowed 4 weeks respite care a year. You can end up trapped.
It can get really bad, you don't know what to do, you can fret over
it and feel worse."
KEY POINTS
- If people
do have to contribute to the cost of respite care then that contribution
should only be a token one.
- Respite care
is a form of health (and perhaps social care) whose cost should mainly,
or entirely, be born by the state.
- There should
not be a time limit for respite care - the time spent in respite care
should be determined by an individual's need.
Transport
Members felt that
if people had to travel in order to get respite care then there is a
need for their travel expenses to be paid or subsidised. Other people
who struggle with travel may also need assistance with the travelling
itself. There
may also be a need to pay the costs of carers who have to travel to
visit people.
KEY POINTS
- People's travel
costs to and from respite care should be paid for.
- People who
have difficulty in travelling should be given assistance if necessary.
Parents and Respite Care
This was a hard
subject to find solutions to. It was agreed that parents with mental
health problems are often particularly in need of respite. They need
breaks away from their children (perhaps relations could look after
their children or workers could come in to look after the children),
but they also have a need to go to a facility that caters for families
together. For instance, a set of cottages with support.
However, it is important
that children do not feel that they are the reason a parent needs a
break or that parents feel that their children are seen as at risk if
the parent admits to the need for a break. Generally
there was a need for facilities to become parent and child friendly,
for instance, through the provision of crèches.
KEY POINTS
- Respite care
can be particularly important for parents. They need room both away
from their children and also together as a family in family friendly
facilities.
Accessing Respite Care
Not everyone knew
that there was such a thing as respite care and other people felt that
they were not given it as an option. Some people also felt that they
would have to be very assertive to gain respite care. There
was a call for more publicity about respite care:
"It
can be very difficult for, say a couple, to get a break. There can
be a lot of guilt. It could be very hard to ask for it. You may need
someone to suggest it."
"….
If they could experience how respite works then people would know
enough to ask for it and seeing the good it could do could make it
easier."
KEY POINTS
- There should
be more publicity about the availability of respite care.
- Users sometimes
need to be helped to ask for respite care.
What Is Respite Care Like Now?
Most people who
had experienced respite care had done so at Catalina House Nursing home.
There was a range of opinion about this facility. Some
people thought that it provided a great break. It prevented hospital
admission and made life survivable:
"We
see nothing wrong with the unit, the staff are good and so is the
Manager. They have given me a chance and done me proud - I'm getting
something out of it."
"It's
nice to know that there are skilled people only a few seconds away
who can give you help when you need it. If you were trapped at home
you could end up sitting really scared and eating all your medication"
"It
was quite useful. I needed some space which I got. It was useful that
it was isolated and away from town and people. Looking back I probably
benefited - I needed away from the scene - I didn't need institutionalised."
However there were
a number of people who were extremely critical of the place. Some because
of their feelings about a few members of staff, but mainly because of
its isolation and distance from facilities (it is situated on an industrial
estate outside Alness), and because of the fact that people using the
facility often had little money available to them.
There was also criticism
that there was very little to do at the centre:
"Being
able to go there and having support and peace is very good and therapeutic
for some people, but other people who have gone have felt the lack
of things to do made it very boring."
There
was also worry about the fact that the facility is a private one:
"It
is a tragedy that a place that is meant for respite has been established
to make a profit."
A more general point
was made about people's prospects when their stay ended:
"Respite
is very useful but it doesn't change what you are going back to. No
matter how well I am treated here, the reality is that I have to return
home. I can get very anxious, especially when the time to leave approaches,
knowing that I have to go back home eventually."
Some of the longer
term residents of Catalina House and other residential facilities made
the point that, although they lived in a place that also provided respite,
they also needed respite from the centre itself. This illustrated the
point that the essence of respite care is to provide a break from the
situation you are in and the people you are mixing with:
"People
still need a break from Catalina. There is nowhere to go if you live
there. You need a choice in where you are going. Everyone needs a
break"
"It
(respite care) would be a good thing even if people were already in
hospital or residential accommodation."
KEY POINTS
- There is a
need for choice in the respite care on offer.
- Some people
object to receiving respite in private facilities.
- Respite is
needed for people already living in residential settings.
- There are
varied opinions about current provision of respite care.
Respite Care and People's Carers
Traditionally respite
care is a term used to describe services, which give carers a break
from the people they are looking after. We discussed the respite care
aimed at assisting carers in the HUG branches:
Do
Carers Need A Break and Why?
Everyone agreed that just as we need a break from carers, they also
need a break from us. In some circumstances it was felt that it was
absolutely essential for carers to have a break. The reasons people
had for this were:
"Everyone
needs a break. You can get fed up with the sight of each other whatever
your situation."
The stress of the
situation:
"They
can end up tearing their hair out in frustration and get ill themselves."
"If
there was no respite then we would worry about our carers and start
to feel very guilty."
(At the time of
the meetings we were aware of one carer who had been admitted to hospital
as a result of the stress of caring for another person.)
"They
need it because they are on duty 24 hours a day. If the client is
getting into problems then they can nip it in the bud before the carer
gets snowed under or it develops into an acute illness."
"Carers
can themselves end up feeling that they will end up in hospital. The
sleepless nights can be very draining. You have to have a break if
you are to continue looking after someone."
"They
need a break away from worry, they need a bit of peace. It's hard
to know they need a break - but its reality."
Some people also made the point that neither users nor services providers
should ever take it as inevitable that carers will provide care, and
also that if carers are looking after us they should be guaranteed access
to respite if they need it.
General Points About The Help Carers Need
A number of other points were also made about carers when they are caring
for people:
"Carers
can come under a lot of pressure when they see their relative is really
ill and they try to help but cannot do anything."
"It
can be very frustrating when they are trying to help but cannot find
answers or even information. This can be made even worse by rules
of confidentiality. There is a need for advance directives and for
carers to meet with each other and to share concerns and support."
Apart from a break
carers need:
- Some form of
help in knowing what to do and how to care.
- Getting basic
information and skills can be really good.
- Knowing what
to expect.
- Often there can
be a big strain but carers don't know who or where to ask for help.
- They need recognition
for the job they do.
It is clear from
this that both carers and users can desperately need a break. However
the form of this break can vary. It seems that although users and carers
often need a complete break away from their environment and situation,
carers also have a need for short breaks away from the user at times
when the user needs a lot of assistance.
"If
you are ill then your carers will need a break. You need looked after
in your house usually."
KEY POINTS
- Carers can
have a great need for respite from the situation that they are in.
- The respite
they need may not always correspond to users' needs for respite care.
How Do We Feel About Carers Needing A Break?
Amongst some communities there is sometimes a feeling of resentment
that people could believe that our friends and relatives could need
a break from the reality of our lives. It
is sometimes seen as demeaning that users should need to be 'looked
after' in order that their loved ones can recuperate from their presence.
We looked at this
within the HUG groups and found that, although some people did have
feelings of guilt about the fact that their partners and friends needed
breaks, for the majority of people it was just a part of their lives.
It was very easy to see why everyone, when faced with the reality of
mental illness, may need a break from it:
"It
is a natural part of our situation. We know they need a break"
"We
are well aware that we can be a nuisance at times. We know that they
need a break."
"Knowing
that people need a break from us is something that you have to resolve
in yourself, but it is still something that has to be done."
"We
need realism and we must realise that those closest to us need to
take a step back to clear their own minds and chill out."
"It's
a fact of life."
KEY POINT
- Although some
people can feel guilty about the fact that their carers need a break,
most believe that it is a part of life to which people need to adapt
and accept.
Conclusion
- Users and carers
and their dependents often have limited access to breaks that will
reduce the impact of mental illness on them and their families.
- Breaks can take
the form of conventional respite care in specialist facilities or
breaks within the home or they can consist of breaks away from home
in the form of holidays.
- Respite care
is not only a way of recuperating; it can be a chance to look at a
person's situation, to review it and make decisions and learn skills
that will help people manage better in the community.
- Members of HUG
believe that access to respite care should become a routine option
in a person's treatment.
- Any payment for
respite care should (at the most) consist of a token contribution
(especially for those on a low income). Users should not lose out
because of the worry they have about their finances.
This report has
been ratified by the HUG Round Table and will be sent out to key professionals
within and outside Highland. It is available from the HCCF office at
Highland House, 20 Longman Road, Inverness IV1 1RY (Telephone 01463
718817).
The report will
be presented and discussed at future HUG 'Round Table' meetings involving
people planning services in the Highlands.
Key Points
Is Respite Care
Needed And When?
Respite care is an important part of a person's treatment.
It can both provide a break and recuperation, room for enjoyment and
room to look at a person's situation in safety.
Where Should
Respite Care Be Provided?
Most people would like a break to be away from their usual environment.
However there needs to be some choice as to where a break occurs.
Many people would like a break to be in a peaceful setting although
there are some that would benefit from a more dynamic environment.
What Should People
Get Out Of A Respite Care Facility?
Respite care involves four main elements:
Refuge and relaxation.
Something to look forward to.
Having things to do and enjoy.
Having time to reflect and learn.
What Should Happen
In Respite Care?
Respite care can help people get back on track through experiencing
positive activities in a setting in which they are relaxed and open
to change.
Other Forms Of
Respite Care
- Holidays
- Respite care
does not always have to be a specialised service. A holiday can
fulfill this function for some people.
- Supported
Holidays
- Many people
can benefit from a break - some people need support to do so.
- Daily Respite
- Respite can
be provided through people's use of other facilities.
- Short term
Respite
- Some people,
especially carers (who may also be users), can and do benefit
from short breaks provided at home.
Alternatives
To Respite Care
Respite is not the only way in which people can regain the confidence
to live a quality life in the community. It has to be seen in conjunction
with a range of community support options.
How Is Respite
Care Different To A Holiday?
For some people respite care and a holiday are the same. However, for
many people there is little similarity - it is a form of treatment and
support.
Respite Care and Hospital
What Is The Difference Between Respite Care And A Hospital Admission?
There needs to be clarity about when a person will be admitted to hospital
and when it is more appropriate to admit them to a respite facility.
Respite is more about promoting health than dealing with illness.
Should Respite Care Ever Be Provided In Hospital?
Respite care is sometimes best provided in a hospital setting but should
generally be provided away from hospital.
Should Respite
Care Be Provided Only In A Mental Health Setting Or With Other Client
Groups?
Respite care should be provided in facilities dedicated to the needs
of people with a mental illness.
Would Respite
Care Help Prevent Hospital Admission And Help People Cope In The Community?
Respite care may be able to reduce hospital admissions and enhance a
person's ability to cope in the community.
Should People
Pay For Respite Care?
If people do have to contribute to the cost of respite care then that
contribution should only be a token one. Respite care is a form of health
(and perhaps social care) whose cost should mainly or entirely be born
by the state. There should not be a time limit for respite care - the
time spent in respite care should be determined by an individual's need.
Transport
Peoples travel costs to and from respite care should be paid for.
People who have difficulty in travelling should be given assistance
if necessary.
Parents and Respite
Care
Respite care can be particularly important for parents. They need both
room away from their children and also time together as a family in
family friendly facilities.
Accessing Respite
Care
There should be more publicity about the availability of respite care.
Users sometimes need to be helped to ask for respite care.
What Is Respite
Care Like Now?
There is a need for choice in the respite care on offer. Some people
object to receiving respite in private facilities. Respite is needed
for people already living in residential settings. There are varied
opinions about current provision of respite care.
Respite Care
and People's Carers
Do Carers Need A Break And Why?
Carers can have a great need for respite from the situation that they
are in.
The respite they need may not always correspond to users' needs for
respite care.
How Do We Feel About Carers Needing A Break?
Although some people can feel guilty about the fact that their carers
need a break, most believe that it is a part of life to which people
need to adapt and accept.
Appendix 1
Alternative Views About When Respite Is And Isn't Needed
A small number of
people looked at respite in the following ways:
Some saw illness
in terms of a spectrum -
At one end of the
spectrum a person is very ill and life a constant struggle, even simple
tasks become unmanageable and distress is a constant feature. For such
people hospitalisation is an ever present possibility and respite from
their situation, as a positive alternative to hospital, would be welcome
as a part of their treatment.
Other people are
at the other end of the spectrum and are coming out of a period of their
lives that have been dominated by illness. Life is looking up but they
have had little time to enjoy themselves or relax and have great problems
with their self confidence and motivation.
For such people
respite care could act as a bridge to a new and more positive life and
would also be welcome.
Then in the middle
there are some people who are maintaining a life but with great difficulty.
For some of these people change and holidays and breaks could be more
than they could cope with, both because it requires a great effort to
organise but also because facing a 'better' life away from home just
serves to remind them how hard life at home is. This pointed to the
agony of situations where home life is almost insupportable and changes
in routine only serve to point out how fragile their life has become.
A small number
of others who thought that respite care, especially any respite care
that could be seen as enjoyable, should not be an option.
This was for two
reasons:
Many people with
a mental illness are barely tolerated in their communities. If they
were seen to be getting breaks that other people weren't then the community
would react even more negatively to them.
"People
still have a misapprehension that hospital or respite is about having
a good time."
The other related
reason was that many people live in difficult situations (for instance
those who are in long term unemployment or those on very low incomes).
They cannot afford breaks, and do not expect them, and therefore why
should people with a mental illness? Can they demonstrate that they
have a greater need than any other disadvantaged group?
People were also
keen to say that everyone needs a break from their environment whether
they are ill or disabled or not, and that one of the main problems was
that some sections of the community did not have this opportunity.
Appendix 2
What Should People Get Out Of A Respite Care Facility?
People wished to:
1. Recharge themselves
2. Feel refreshed
3. Get peace of mind
4. Become de-stressed
5. Have nothing to worry about
6. Be able to talk things through with another person
7. Be able to reflect on their situation and how to cope when they get
back to it
8. Get a break
9. Get away from pressure and their home situation
10. Give their carers a break
11. Look at the problem they are escaping from along with the support
of staff at the centre
12. Escape from their problems
13. Gain insight into how they are managing
14. Get back to how life used to be
15. Have help with coping
16. Have a review of their treatment
17. Get used to life again
18. Jumpstart into a new way of living
19. Have something to look forward to
20. Have help with both their health and social circumstances
21. Increase their confidence
22. Have a chance to learn
Appendix 3
WHAT SHOULD HAPPEN
IN RESPITE CARE?
People would like:
1. To rest
2. To sleep
3. To be looked after
4. To be left to their own devises to a certain degree, and to do what
they want when they want
5. Minimum rules and order - just enough to keep the place safe and
functioning
6. Nothing should happen at all
7. There should be gentle activities which you might be gently prodded
into doing
8. It would be possible to opt in or out of activities
9. To be taken out, treated, do things, enjoy ourselves - a real break
10. There should be good food
11. An opportunity for arts and crafts
12. Physical activity
13. Anxiety management and other groups
14. Self-management courses
15. People there to do things for you when this is needed
16. Little pressure
17. It should not be authoritarian or controlling (although routine
is important)
18. There should be games, activities and distractions
19. Being able to get to know people with similar illnesses
20. To get to know people and know that they are there for you when
you need them
21. It should provide security and safety
22. It should be enjoyable
23. No uniforms
24. There should be access to a library and computers
25. There would be space and peace
26. It would be a gentle place
27. It would be an attractive place and would be well equipped
28. There should be access to people who are friendly and also know
what they are doing.
29. There should be ways in which you can express your anger and frustration
- perhaps a punch bag
Acknowledgment
With thanks to all
the members of HUG, and other mental health service users, who contributed
to this report.
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