Appendix 5: Note on the Committee's web
forum
INTRODUCTION
1. The
Joint Committee on the draft Care and Support Bill set up a web
forum to hear the views of carers. The Committee was keen to hear
about the experiences of carers and what impact they thought the
Government's proposed legislation might have on their own situation,
either positive or negative. The comments helped inform the recommendations
the Committee made to the Government in the report.
2. Practicalities
- The forum opened on 21 January 2013 and was closed
to new comments on 22 February 2013.
- The site was designed and created by the Parliamentary
Web and Intranet Service. During the registration process, users
agreed to a set of discussion rules. The forum was moderated by
Joint Committee staff. Messages were checked to ensure that they
adhered to the discussion rules before they were published on
the forum.
OUTREACH
3. The
forum was announced by the Committee via a press notice. The Web
and Intranet Service publicised the forum via social media outlets
including Facebook and Twitter. Parliamentary Outreach also promoted
the forum to their contact base.
FORUM QUESTIONS
4. Participants
in the forum were asked to address the following questions:
- Based upon your experiences as a carer what impact
do you think the proposed changes will have on the role of local
authorities? Will the proposed changes help carers?
- Based upon your experiences as a carer what impact
do you think the proposed changes will have on the current assessment
process?
- Based upon your experiences as a carer what impact
do you think the proposed changes will have on the current measures
in place to safeguard vulnerable adults?
RESPONSIBILITIES OF LOCAL AUTHORITIES
A number of posts described the shortcomings of local
authority performance in providing social care, often making suggestions
for improvements.
The need for better information, and a clear
idea of who was responsible for what, was a persistent theme:
"Another major issue is information and advice
provided by local authorities. Many are moving over to web based
solutions. Only around 58% of disabled people live in households
with internet and of those many will not be able to access computers
without support. Local authority care packages are increasingly
being focused on basic personal care alone which means that even
if a disabled person has a computer in their home they may well
not have the support to use it. Web based solutions do not work
for disabled people yet, in full knowledge of this, local authorities
are opting to cut face to face and telephone advice and information
services."
"We need:
- One point of contact with the authority to make
things happen.
- A first visit which will incorporate a risk assessment
agreed with the prime carer as to what manual help, psychological
support and provision is required, how often they are visited
by the lead social worker as well as the service providers, and
vision of any service providers' contractual obligations.
- The telephone number you complain to to be answered
by the person who can, there and then, issue an instruction to
resolve the matter."
"There needs to be a one-stop information place
where the process of help is followed through. So many departments
and agencies all blaming each other for what's not being done."
"During the last ten years that I cared for
my late husband, I found local authorities to be less than transparent
when it came to advice about availability of carers and equipment.
One had to forage through websites and a plethora of information
concerning the disease and effects surrounding my husband's illness.
Local social workers were less than ready to divulge information
concerning funding and accessibility thereof. Social workers assigned
to my husband's case displayed apathy not empathy."
One respondent called for
"full information on services and entitlements
to those who are initially self-funding as well as those whose
care the Local Authority pay for. At present there is not cohesive
support for carers of those who are self-funding—you have
to find out things for yourself and it can be difficult to find
out what help is available now (whether or not you have to pay
for it yourself) and what would be available in the future when
self-funding money has run out."
The pressures on carers came through in a
number of contributions:
"Carer needs should be assessed on a personal
level. We want/need a break, myself especially after 24/7 caring
for nearly six years without a break. Having to deal with daily
living and all it entails and look after hubby's complex needs
has left me, at times, suicidal.
"All we wanted a week together in a hotel where
the strain of daily living (washing, ironing, cooking cleaning,
finances etc) was taken off me for a while and where we could
just enjoy being together. But no. We are not allowed a holiday
together, we have to be separated and we do not want to be separated
so we struggle on. Hubby's life expectancy is very short, we're
talking a year or two, and after 43 years together time is so
precious. Why cannot the assessors see our individual needs ?
I have saved the country thousands for what? To spend the last
few months/years struggling on the brink of suicide?"
"The case of carers caring for more than one
person must also be sorted out; the cumulative effect is enormous
and at present is not fully taken into account. Also the issue
of carers who have been caring continuously for over 25 years
must be recognised and the effect it has on your health taken
into account. Training on how to promote carers' assessments and
how to do them properly should be mandatory and moderated to ensure
equality."
The role of carers should be better understood and
explained by Government, one respondent told us:
"The government overall could do a great deal
more to enlighten the general public about carers and the caring
role - people still do have an outdated understanding of what
caring means and still think caring is about people being paid
to go into someone's home to help them prepare a meal or do some
cleaning for them."
The quality and pay of social and care workers
were seen as inadequate by some respondents:
"Care workers desperately need worthwhile training
and better pay in order to provide a quality service.
"Social workers need more experience of the
needs of the elderly. The generic nature of the social work degree
does not equip them with the tools to deal with care for the elderly.
Once you find out that the social worker is just a pen pusher,
knows very little about the elderly or about local services you
withdraw and help yourself."
"You get what you pay for. Pay a better wage
and a better quality of staff will be prompted to work in this
industry. Currently 'bank' staff receive more than regular staff;
what message does this send and what continuity of care does this
provide? "
Some wondered whether local authorities would find
it possible to shape the local care market (Clause 3):
"In terms of promoting diversity and quality
of local services local authorities struggle to support the development
of a range of providers. I have been involved in setting up a
user-led disabled people's organisation to provide peer support
and advice for disabled people. We have faced many barriers with
the local authority contracts and procurement processes that are
designed to work with large organisations ... Working with a range
of smaller services as opposed to a few big ones creates extra
work for local authorities at a time when ... their funding is
being cut and they are over-stretched. In my experience that have
neither the capacity nor the will to change their practices to
support the development of more options for service users. Who
is going to measure whether they have done all they can to support
the market to develop?"
Respondents often pointed to the problems involved
in meeting the needs of those with specific conditions:
"Whilst I find Clause 3 laudable in promoting
the quality of local services I am concerned that it will fail
to allow access to specialist services where the local authority
is of the opinion that it provides adequate services to meet the
needs of the individual. In our case we had to battle to obtain
funding for our daughter to attend a national Specialist College
where she receives a full range of therapies and support to assist
her continuing recovery from brain injuries sustained in a car
accident nearly three years ago when she was nearly 18 ... My
fear is that short-term penny pinching will reduce choice to the
local provision even when it has no specialist knowledge, rather
than recognising that every inch of gained or regained independence
represents a long term cost saving."
"It is important that whoever is responsible
for assessing the needs of anyone on the autistic spectrum has
had training in order to interpret responses around, for example,
needs and aspirations. Support to prevent and provide early intervention
is to be welcomed; however any reduction in presumed dependency
should be done with caution to avoid crises.
"Simplifying support makes sense only if it
does allow for flexibility in a new system as those requiring
care are so diverse and one set of 'rules' may well not fit all
needs."
"I care for my brother who was diagnosed with
psychosis 18 years ago. I can honestly say I have had no caring
support of any use ever offered to me. Unfortunately all that
was on offer was a leaflet & someone basically feeling sorry
for me. This is not helpful to be able to look after the people
we love. The people who are supposed to give you support have
no or little knowledge of psychosis, so for me and I'm sure others
the barrier starts there."
"A social work degree does not equip social
workers with what is needed for accurate and meaningful assessment
of clients and their situations. Skills of knowing what is around
for clients and how to access the provision are often limited.
I found that in the end when I became a very substantive carer
I did all the research / investigations, myself to get available
services."
There were questions about whether the duty on local
authorities and others to co-operate (Clauses 4 and 5 of the
draft Bill) would work in practice:
"Greater co-operation between councils and other
local organisations is a very welcome move in my view. However
I have little or no faith in local authorities using monies for
the purpose it is intended; the carers' grant is a prime example."
"In my area of inner London I know that often
professionals in the health field do not necessarily think highly
of the local authority officers or its social workers, but use
them as a necessary 'pass on function', in the hope that clients
will be helped. Of course they never follow up to see what actually
happens. In my case as a carer- very little and harmful actions
due to failures to assess relevant information already held ...
This Bill will change nothing as it is the same people and system."
"If the proposed changes are implemented it
will help enormously to have streamlined services with perhaps
one point of contact to help guide one through the many and varied
agencies and financial obstacles for the carer. Something akin
to the Admiral Nurses used by Dementia UK should be adopted. These
nurses are invaluable for those lucky enough to have them in their
areas."
"I am a carer for a mother who has dementia
and who has not found the current system easy to navigate. The
care and support access needed and the constant battle between
local organisations has unduly created more stress for carers
and their families. More needs to be done to reduce interfaces
and blame culture between organisations ..."
"I approve of the theory of the new Bill but
I have seen attempts in the past to generalise services and they
have not worked. I think co-operation must be improved but if
you ignore the needs of carers in special areas like mental health,
young carers or physical disability you will be selling the carer
down the river. We have managed to persuade our county council
to reverse some decisions they wanted to make recently in these
areas, when they were forced to really listen to the carers involved."
"Clause 3 outlines a framework for providing
service users with choice over their care providers. The insurance
industry is not geared up for this, and in fact is several years
behind in its response to the last government's increasing emphasis
on choice in home care."
"It may not be the place of the Bill to make
provision for agreements with insurers, but it certainly does
not in its current form. For any people who rely on these health
cash plans to supplement the cost of their care, personal choice
of care is a non-starter unless the government makes supportive
agreements with the insurance industry."
There was recognition of the important role of the
voluntary sector, especially the Alzheimer's Society, in filling
gaps apparently left by local authorities and the NHS:
"Without the Alzheimer's Society I would still
be struggling to care for my mother. There is no proper support
at all. The phrase "all words and no action" comes to
mind. I didn't need a lot of help but what I needed was essential
to both our well beings. According to local authority we didn't
meet their criteria so they weren't interested in giving any help
at all."
"In our area so much of the support for Alzheimer
sufferers and carers is initially actually organised and provided
by the Alzheimer's Society charity and not the local authority
anyway, in many cases."
There was a welcome for some of the provisions, including
those for the support of carers, but also scepticism that
local authorities would be able to fund the extra services:
"I think the proposed changes will help carers
if implemented by Local Authorities - but will they be in practice?
Doubtful whether the required funds will be there to do so. "
"These proposals are very fine on paper, but
central government must provide adequate funding for local authorities
to implement them."
The role of prevention is prominent in the
draft Bill, and one respondent saw this as a way in which local
authorities could reduce dependency and so keep costs down:
"Let's not kid ourselves - the main thrust of
this Bill is a reduction in care costs. What is more legitimate
is to try and provide more, better quality and adequately funded
prevention and early intervention support services. If done properly
(a big if!) this will reduce (but not eliminate) the need for
very expensive high level support and care. There will still be
a need for this but if it's a reduced need, perhaps we can focus
on making this better too?"
Assessing needs
A number of respondents said that financial pressures
were preventing local authorities from meeting the assessed needs
of service users. For example:
"After an assessment is done [it is] referred
to a panel who have no knowledge of the persons involved and report
back on their findings. This is where finance rules supreme and
goal posts are moved to make it easier for the panel to refuse
to give more care help. There should be national standards to
adhere to as the duty of care is the thing that is lost in the
decision making."
"At the moment there are plans to close the
Independent Living Fund from 2015, with no replacement ring-fenced
funding being made available to local authorities, to provide
the support needed for people with high support needs to continue
to live independently in the community, nor any firm plans for
how those with the highest support needs and their families will
be able to get the support they need. This is in spite of the
fact that only 2% of the ILF budget goes on administration, compared
to as much as 24% in some local authorities.
"I do not think the proposals in this bill afford
adequate ways in which those who have high support needs will
be given the support they need. In particular, although there
are some minor improvements being suggested in terms of portability
of care and support, unless every local authority has to provide
the same levels of support to meet the same needs there is still
no guarantee that someone can move to another part of the country
and have their needs met, as each council will still have its
own eligibility criteria."
There was concern that the requirements of those
with complex needs should be assessed properly, especially
where Continuing Health Care (CHC) is needed from the NHS:
"It is essential that the assessment process
is made fit for purpose, and that those with profound disabilities
that will require 24/7 support in everything they do for ever,
are not forced to fit into an assessment process that does not
fully cover the complexity of their needs. This is also essential
for those funded by CHC from CCGs where the assessment process
is very different and the two processes should be dovetailed so
no one is made to suffer if they move between the two.
"As a carer it is also essential that I have
the right to an assessment of my needs and that my input even
if my daughter is in residential care is still recognised."
Others had similar comments:
"I think the government has missed a vital
opportunity to put national eligibility threshold in place now,
rather than 'in the future'. A national criterion which states
whether those on low, moderate, substantial or critical needs
are eligible would end the current postcode lottery of access
to care and support services."
"As a carer for an elderly parent it came as
a shock to me that no provision is made for people of my age (59/60).
The Carer's Allowance goes no way to recompensing people for giving
up full time work, and then, to add insult to injury, pension
dates have been delayed to 2015 onwards. You cannot realistically
claim Jobseeker's Allowance because you are not available for
full time work, and then if you do have part time work the system
seems incapable of working out what you are entitled to."
We heard that some carers who could make a contribution
to wider society were not able to do so under present arrangements.
"The bill states that it aims to modernise care
and support law so that the system is built around people's needs
and what they want to achieve in their lives. This could also
be achieved with a system for paid leave for carers, so as to
avoid them having to give up work and those skills lost to the
company they work for."
"As a carer of my husband, I agree with carers
having all support they can and should get. But why are we not
getting a proper allowance? And carer's allowance is taxed. This
is wrong. Many carers can't go out & work. My husband is partially
sighted in both eyes, also deaf and has chronic ongoing osteo-arthritis
of the spine, hips & knees. I have been a carer since the
early 1990s. Carers should also be entitled to regular yearly
carer's breaks; if needs be we should also be able to take our
loved ones with us and not separated."
One person who was a main carer for their 28 year
old son, and a nurse, told us:
"I have had many assessments but very little
action. I have had to give up the job I love because of the state
or lack of care for my son. How can this be right ? Now I am a
main carer I want my needs met ... and would love to go and study
and keep myself involved and up to date but cannot get the support
to do this."
The quality of assessments was criticised
by a number of respondents, with some expressing the hope that
the draft Bill will bring improvements:
"I have just spent ages composing a response
which got lost. Nothing will ever compensate me for the loss of
pay, promotion and pension for being the unpaid carer of my disabled
child—there are not enough hours in the day. We assessed
and assessed and assessed—when they are not short of assessors
and we never fit the boxes ... all disabilities are different
and costly and in different family environments and it is never
that simple....."
"As a substantive carer who was well aware of
my rights to an assessment I requested my inner London authority
adult services to provide this. This was a farce. It took 18 months
for this to be done, although as a very substantive carer of two
frail elders the stress on me was made very obvious. After it
was done I received no services because of a complete failure
of adult social services to be concerned by the fact or to take
into account that I cared for two persons who needed assistance
in my absence- both of whom had been assessed as in substantive
need. What was the point of wasting everyone's time?"
"As a carer for the past 30 years I welcome
the move forward that the draft bill represents, although it could
probably go further. I welcome that it states that the assessment
will focus on the outcomes the person wishes to achieve—however,
due to the economic reality of local authorities I wonder if this
will be translated into practice or if assessment will continue
to focus on care needs alone as that is all that the local authority
can afford to meet. I also welcome the emphasis on carers' right
to have a life and that there is some recognition that the life
of the carer and the person being cared for is interwoven - so
for many of us a joint assessment makes sense. At present the
tick box type of assessments carried out by many local authorities
are so rigid—there is little recognition of the symbiotic
relationship that exists between carers and the cared for person—as
that does not easily fit the tick boxes. Finally words are easy
and unless there is some financial backing to this bill I will
remain sceptical that things will change for either the carer
or cared for person."
"My carer's assessment meant listening to the
life story of an assessor, no help. And as my mother would have
to pay for care they weren't interested in helping. What difference
would this [Bill] make ? Probably none. More wasted money."
"A carer's assessment should be done at the
same time the caree is assessed. Many carers I support have not
been offered or realise their needs should be assessed as they
are not the one having that particular care needs."
The chair of one carers' organisation said that
"the assessment needs to be done more than once
as the person's moods change from day to day The feedback from
carers is that the forms are too long and some have said they
think that assessor does not appear to understand what a carer's
role is We need to look at ways for equal pay for elderly carers
who only get a pension but are still caring so when assessing
look at the income into the family and the needs of the carer.
"
There was a call for local authorities to arrange;
"timely care assessments and ensure they are
done by adequately trained and knowledgeable staff. If there aren't
enough people in social care to do this, why not use properly
trained people from relevant voluntary organisations ?"
And local authorities should, it was said, also:
"ensure all carers know as early as possible
in their caring life that they are entitled to an assessment,
even if they are likely to have to pay for any services. At least
they would find out about advice and other help that they could
buy in. So often, caring is a very lonely job."
"The assessment cannot be a boxed set standard
form, as many disabled people/children have very different needs."
There was a call for clarification of one Clause
in the draft Bill:
"Under Clause 10 (carers' assessments) it is
not clear whether this would give local authorities a duty to
assess more than one carer per adult. My sister and I share care
for my mother, but when we were offered a carer's assessment in
2009 (which consisted only of completing a questionnaire each)
the local authority said they would disregard my assessment because
they could only accept one carer assessment per service user."
One carer called for a simpler assessment process,
with:
" One form that I could complete with all relevant
information that would then be centrally assessed and all relevant
benefits paid e.g. attendance allowance, housing benefit, pension
top-ups etc. rather than having to apply to several different
bodies, often with very similar information, and at a time that
is already extremely stressful;
SAFEGUARDING ADULTS AT RISK OF ABUSE AND NEGLECT
Respondents were in no doubt about the scale of
potential abuse and the need to tackle it:
"I have been staggered by the statistics of
abuse ... there are 5000 incidents reported monthly in the UK
and it is estimated that only 1:6 cases are actually reported.
These statistics are an indictment of our society which is failing
the most vulnerable people in our care homes. Mandatory training
with proper screening, supervision and appraisals would address
this scale of abuse as it would wheedle out the wheat from the
chaff and ensure that only those who genuinely do care are employed
for the demanding and rewarding role that they undertake. I also
propose that all care staff, upon successful completion of the
apprenticeship training programme, are then entered onto a national
register similar to that of trained nurses."
One linked the risk to changes in funding:
"These proposals do nothing to prevent abuse
or neglect from taking place. Disabled and older people are at
great risk of abuse and neglect within residential and institutional
settings like Winterbourne View, which was far from an isolated
incident as the follow up BBC Panorama programme showed, and which
anyone who has spent much time in 'care' settings knows. Yet the
closure of the Independent Living Fund is, as the government admitted
in its response to the Future of the ILF consultation, going to
mean a loss of support for existing claimants and likely to lead
to some disabled people with higher support needs being forced
into residential care against their will."
One respondent referred to "the most worrying
area of responsibility" for carers, and explained:
"People with learning disabilities are proven
to be at greatest risk of abuse in the community
"The practice of housing people separately in
social housing situations is unsuitable for many dependent people
who are being given' independence training' which makes them even
more vulnerable. The inspection system leaves much to be desired.
A safeguarding adults board seems like another talking shop where
the members rarely if ever meet people who have problems with
communication. As an elderly carer I have concerns about financial
abuse after I have gone as my daughter has no family member to
take care of her."
Several respondents were sceptical that local authorities
could effectively enquire into cases where there might be abuse
or neglect of those with needs for care and support. One said:
"Social services / workers have been given this
role in the assumption that their actions and omissions do not
result in serious harm or even death.
"The experiences of many families suggest that
this is far from the reality as social workers frequently ignore
warnings from family carers / members and breach Mental Capacity
Act principles. Research shows that this is little taught and
understood on social work courses. I have witnessed an approved
mental health social worker walk into the room to interview client
and without ascertaining mental capacity shout out 'I am acting
in your best interests'. This goes against the very principles
of the MCA. This behaviour denies the rights of decision making
by those who can and would wish to make their own decisions."
"The whole of safeguarding needs a rethink as
it is done so badly by most local authorities. Removing a person
from a presumed abusive family environment, where the relationship
is long established, can precipitate fast decline and death if
the vulnerable adult does not want to be separated- how can this
be a good outcome from a safeguarding investigation? The human
rights issues cut both ways- the right to freedom from harm and
abuses, but also our own right to decide whether our family relations
are so bad that we need to be 'policed' or removed as adults without
our consent."
Others said all relevant bodies needed to act quickly,
and in particular to take action to prevent harm before
it starts:
"We need local authorities/ CCGs that act when
things go wrong, we need the inspectors CQC to have teeth and
to act when things go wrong. We need avenues of communication
for carers and families to register concerns and for these to
be looked into quickly."
"In the area of assessing need of a person suffering
from mental ill-health, early intervention cannot be stressed
highly enough. It also follows that, on subsequent occasions,
when the patient's health deteriorates, speed is of the essence
again. The delay in re-commencing or maintaining previously successful
medication is detrimental to the long-term welfare of the patient.
"Informed opinion declares that the attained
level of well-being is unlikely to be achieved again, leading
to the need for higher levels of input, which may well have adverse
financial consequences."
"Preventative safeguarding work cannot be dissociated
from other aspects of care and support provision.
"Carers (and the people they care for) should
be able to benefit from social worker assessments that have the
courage to identify when either party may be at risk of abuse/significant
harm if their current situation continues and then help them to
take steps to avoid (i.e. prevent) things getting that far. This,
of course, may require services, which the given local authority
has to fund. There is a real risk of nothing really changing for
people if this doesn't happen, and carers/cared for are left until
something does actually happen and we get the same old reactive
intervention."
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