Download health care and services

NATIONAL CARERS STRATEGY
SUBMISSION ON BEHALF OF
MS IRELAND
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INDEX
1. INTRODUCTION
2. INCOME SUPPORT
3. HEALTH CARE AND SERVICES
4. PROGRAMME OF TRAINING (DURING CARING AND POST CARING)
5. LABOUR MARKET ISSUES
6. TRANSPORT
7. HOUSING
8. INFORMATION SERVICES
9. SOCIAL INCLUSION
10. RESEARCH AND TECHNOLOGY DEVELOPMENT
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INTRODUCTION:
Carers play a vital role in our society today and we rely on them even more as the
demands on the Health Service far outweigh the resources available. For this reason, it is
imperative that they receive statutory recognition for this important role. The figures on
our recent census show that there are 166,000-recorded Carers who work less then 10
hours a week and 23,000 receive the Carers Allowance at a cost of 400 million. The
assessment of needs show that many are unable to claim the allowance because of the
restrictions of the means test.
Our hospitals are overcrowded and the recent unpleasant exposure of some Nursing
Homes has all attributed to a certain amount of fear among people in our community
leaving them with little option but to undertake caring for their loved ones at home.
The extraordinary work, which carers do is a wonderful example of some people taking
responsibility for each other and in some cases undertaking their role in a purely
voluntary capacity. Whilst caring for someone can be fulfilling, it can also be a difficult
job with inherent emotional and physical burdens and each caregiver will experience very
varied and individual reactions to their particular situation. We may all need to provide or
arrange care for a loved one or even ourselves at a future date. Most carers choose to care
for reasons of love, loyalty, friendship or support for others.
Caring also requires knowledge, patience understanding and companionship. It is a very
personal role and is individual to each person. Carers can become real partners to the
people requiring care, and caring is often founded on close relationships. Carers very
often transform the lives of the people they are caring for the caring role grows out of the
relationship and is one which most carers undertake from choice. All this said, carers
need fundamental support in order to make real choices about the way they run their
lives, maintain their own good health, and exercise independence and for this to happen
their role must be recognised by policy makers and statutory services who are
inextricably entwined.
The provision of more state carers or practical assistance with caring is cited as the top
priority for service development for carers. Providing for assistance in the home would
relieve stress for the carer both emotionally and physically. Empowering carers to
achieve a balance where neither party’s needs are diminished is the only way to a
successful outcome and a positive experience for both parties.
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Multiple Sclerosis is a neurological condition, which affects the sensory and motor
abilities of the person. There are four types of MS and the severity, duration and presence
of symptoms varies from type to type and varies greatly from person to person. In
general, symptoms include fatigue, visual problems, pain, bladder and bowel functioning,
cognitive difficulties and reduced mobility.
People who provide care for people with Multiple Sclerosis are a very diverse group as
this can affect people at different stages of their lives where their requirements can be
many and varied anytime from the young teenager to the later end of adulthood. The
disease process can also require a varied number of support systems to ensure quality of
life within society. The level of care needed depends on the level of dependency. While
at the early stage of the complaint, many people require only a little support there are
others who require substantial care and possibly 24-hour care.
In 2006, the Carers Sub Committee of the Board of MS Ireland undertook a survey and
while the response to the 4000 questionnaire was, only 2%. The survey has shown many
issues that need to be addressed on behalf of carers from an emotional, physical and also
the perception of carers, some of these needs are met through our services and resources.
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INCOME SUPPORT
Many informal Carers are in full time employment when the need for care arises.
Sometimes they continue to combine work around care requirements where the impact is
minimal.
Key findings from the MS survey:

67% of carers for people with MS provided care on their own and without support

76% provided care for spouse or partner

51% of carers provided care for over 45hours a week
The survey demonstrated the following:

45% were in receipt of Carers Allowance

3% received Carers Benefit

3% Domiciliary Care Allowance

49% received Respite Care Grant.
If carers have to reduce the hours they work significantly or give up work altogether, the
financial and emotional implications can be far reaching. Loss of pension is a prime
example and has not been given due consideration by the Government. Paid employment
is vital for financial independence and to subsidise the costs of caring, it also offers an
external focus and source of satisfaction. Carers must endeavour to maintain social
networks and friendships, which will help to maintain Carers’ self-esteem.
Flexible employment policies are essential. Less then half the carers surveyed are in
receipt of Respite Grant or Carers Allowance. Only 5% rely on paid Carers. Carers’
Allowance should in future not be means tested.
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HEALTH CARE AND SERVICES
Support Services need to be greatly increased as shown in the results from our survey.
23% received services from the Public Health Nurse
21% receive physiotherapy
This is a vital service for people with MS who require regular physiotherapy, as it is
known to have therapeutic value in maintaining movement and muscle tone and thus
relieve dependency.
3% receive assistance from a work related Personal Assistant,
8% receive assistance with Bathing and Toilet requirements.
20% have domestic help
9% attend a day activity service
11% avail of respite.
28% found it very difficult to access services.
The top priority should be to improve the availability services and to develop more
support services. These must be a statutory requirement and an important part of the
future strategic plan.
Another source of support that carers need is accurate and reliable information to enable
them to make decisions. The onset of caring can be sudden. Carers may have to deal not
only with the immediate needs of the person they are caring for but also a range of new
concerns-details of the illness or medical condition and what services are available and
who to approach for help.
Many new carers will have limited previous contact with statutory and voluntary
services and even the language and interpretation can have a daunting effect.
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PROGRAMMING OF TRAINING (DURING AND POST CARING)
Training can empower carers by giving them new confidence allowing them to make new
contacts and equipping them with the skills which enrich their lives. Ideally, a defined job
description needs to be established and the training needs built into these requirements.
From the MS survey:
9% of carers received training in personal care (eating, bathing, toileting)
10% of carers received training in dispensing medications and assisting with treatments
6% receive training with emotional support.
There are a wide variety of services required and the list can increase, as more
dependency/support is required e.g.
Assistance with personal hygiene/preparing light meals/ assisting with medication. /
Assistance with entertainment.
All of the above require specialist training.
1. Lifting and transferring techniques to protect both the carer and the client
2. Training people in personal care to ensure that the dignity and respect of both
parties is always a paramount priority.
3. Education on feeding, nutrition and food hygiene
4. Basic First-Aid/Response to emergencies.
5. Basic knowledge on medication.
6. Communication skills/ patient etiquette/emotional/psychological support
7. Safe use of Aids and Appliances
The training could expand to different levels as the role changes. Regular assessment and
a combined mentorship programme is an essential part of any training programme.
At present, the majority of carers help with domestic and household duties. This is
closely followed by assistance with transport and emotional support is shown to be a very
common provision.
There should be a separate programme available for those returning to the work place
after a significant amount of time spent caring. However, it could also be acknowledged
that the carer has learnt and become proficient at a number of new skills during the caring
time. This could be an attractive attribute to a number of employers.
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LABOUR MARKET ISSUES
The government needs to reform Social Welfare so that people can become independent,
rather then locked into dependency. Welfare is about work for those who can, and
security for those who cannot. Carers need a single gateway, which will bring together
the Employment Services, Benefits Agency and other welfare providers at a single point
of contact.
Everyone applying for carers benefit needs to have access to personal advisor to help plan
a route back to independence, whilst also ensuring that they receive the benefits to which
they are entitled. This will help carers to remain in touch with the world of work and will
ease their transition back to employment.
The government is obliged to assist those whose caring responsibility has ceased. The
focus should in particular be on the younger person who may have been on long-term
unemployment and need to retrain or to return to work. There is also a proposal in the
United Kingdom that carers should be entitled to a second pension based on the numbers
of years of their caring. Precise conditions need to be established but this would ease the
carers concerns on their old age pension entitlements.
Carers who are in employment also need to have access to flexitime without suffering
retribution. There are always a number of medical/other appointments to be covered and
they may require carer’s leave at short notice; employers need to facilitate the carer.
Carers have to be held in greater value by both the government and society.
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TRANSPORT
Carers need to have accessible public transport available and the provision of reliable
specialized transport for both themselves and the person for whom they care.
At present, drivers or passengers with physical disabilities (in receipt of Primary Medical
Certificate from the Health Service Executive) are entitled to claim exemption from
Vehicle Registration Tax and Value Added Tax on their vehicles, as well as repayment of
duty on fuel and exemption from annual road tax. These benefits are only available to
those drivers or passengers who meet stringent conditions. This approach prevents many
people with MS from benefiting from these rebates.
MS Ireland recognises that access to motorized transport is essential to enable people to
lead independent lives and participate in the community. The private car remains the
most suitable option for many people, particularly those living in rural areas.
However not all people can afford their own personal transport and the government needs
to improve the present system. Only some buses and trains can facilitate disabled
passengers. There is also a need for a greater number of taxis and a more efficient system
for booking these cars particularly in rural areas. The government should establish a
major national review of voluntary and community transport, particularly door-to-door
services for disabled people.
MS Ireland calls on the Government to review the current criteria for drivers’
concessions, in order that anyone diagnosed with MS automatically becomes eligible
for these rebates
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HOUSING
Living in the right sort of accommodation can make a considerable difference to the lives
of carers and their clients. It might be necessary to move in with the person or to live
nearby. This can mean that the home has to be adapted to suit the needs of both parties.
Living in proximity to ‘work’ can have its own negativities and requires very careful
planning.
Carers need good information on the range of housing options available to them, the
repairs/adaptations required and the effects of their tenancy rights if there had to be a
move to other accommodation. It should also be proposed that joint tenancy agreements
should be allowed where one party is caring for the other. Local Authorities should be
encouraged to prioritise the allocation of housing to facilitate carers.
People needing care should be able to benefit from a range of services provided with their
accommodation. These may include the services of a warden, a call system in case of
emergencies and other facilities.
Incentives should be created for local housing and social services to work together to
deliver cost- effective and high quality services to the more vulnerable of our society.
Grants for adaptations should be administered under a Home Improvement Agency and
the process needs to be speeded up and greatly improved.
The proposal should bring the funding of these services on to a more secure legal footing
for the benefit of these people so that they can remain independent in the community.
Carers should be entitled to expect an efficient and high quality service.
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INFORMATION SERVICES
This area should include information for the carer on how to support her patient for their
particular health needs and the treatment of the person they are caring for particularly the
medication and recognising side effects arising. They also need information to allow
them to deal with the symptoms of some illnesses and to recognise when they should
urgently ask for professional help and how best to obtain it for specific problems.
The patient’s consent will be required as to the amount of detail that is released under
‘Patient confidentiality’. In addition, how much information is required to allow the carer
to function within their role. Carers need to be fully versed in their responsibilities to
‘confidentiality’
Carers from minority groups may have additional needs; they may require interpreters,
information on cultural traditions and religious practices. People from ethnic minorities
may also have particular health problems.
Patient discharge information is also a priority and the hospitals should involve the carer
so that transition to home goes smoothly.
Telephone Helplines can be a means of keeping carers up to date as information can
change and this would be easily accessible. Text messaging service has also been of
value in some medical settings.
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SOCIAL INCLUSION
Caring can become all-encompassing particularly in a close family setting where the
carer often forgets to have ‘ a life of their own’. This can have a detrimental affect on the
Carer and even more particularly when the caring time has passed.
Carers can become a unique group of people and should be encouraged to form their own
groups where they can draw strength from each other and can communicate their fears
and concerns without risk of reprisal. Carers study days and workshops are very
successful and have been organised by MS Ireland from their regional offices. They have
regular ‘Carers Days’ where carers not only avail of relevant information, but are also
given some very necessary pampering time in the form of aromatherapy sessions and
massage. They also organise a number of coffee mornings and evening dinners
throughout the year.
A ‘sitting service’ should be considered allowing time off for the carer to attend an
evening course or some form of entertainment, which would give the carer an opportunity
to relax.
Community Networks Ireland a charity of over 20yrs experience has recently officially
launched a new unique service ‘Social Telephony’, which is the first of its kind and is
specially for the voluntary sector. This will link groups of people by phone and allow
people to become part of a support group and remain active in the community, regardless
of where they live. The service will allow colleagues in the voluntary sector to stay in
touch and attend meetings by providing them with an operator-led conference call
service. This affords a real opportunity for people in the community who are alone,
immobile housebound and restricted from socialising. This will create opportunities for
social inclusion and positive community engagement
Giving strong support to carers over service planning and provision will help to ensure
that they become partners with the statutory services in the provision of care.
Better-supported carers will be better able to make better lives for people for whom they
are caring.
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INFORMATION TECHNOLOGY
Communication technology is a great enabler and in some cases a lifeline providing
access to information and education that can literally change people’s lives and prospects.
This area should be the way forward for the carer to access easily all up to date
information, which must be user friendly. Training may be required and centres should be
available for the individual carer e.g. GP’s surgeries libraries and other locations.
The information available should be:
1. All Social Welfare Benefits
2. Information on all the different charities
3. Lists of relevant telephone numbers e.g. Help lines
4. Leaflet information on particular issues
5. Contact details for support groups
6. Information on health problems and specialist services
7. Specific health information in connection with medical conditions and their own care
requirements.
Service providers must ensure that through an assessment, process carers are provided
with individualised information on supports available to meet their particular needs and
they in turn must support them in their caring role by provision of information for the
person for whom they are caring.
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Information is central to Carers needs without it they do not have the means to
make choices and to have control over their own lives.
People in statutory services are honour bound to provide
‘RIGHT INFORMATION RIGHT FORM AND RIGHT TIME’
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