Draft Care and Support Bill - Joint Committee on the Draft Care and Support Bill Contents

Appendix 5: Note on the Committee's web forum


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.


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.


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?


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;


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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Prepared 19 March 2013