As a carer, over the years, I have suffered serious sleep deprivation, through being disturbed many times in the night over many years. This lead to stress and health issues. It should be a carer’s right to get 8 hours sleep a night. In any other job this would be a given.

Direct payments work well for us, but take a lot of time and effort to run, in terms of recruitment, training, payroll, pensions etc., not to mention complying with employment law in terms of equality of opportunity, disciplinary, sickness, maternity leave etc. In 3 years we have had all of those. However, I consider that we have a good team of care workers. Keeping them is another matter, they have tremendous responsibility, it is a skilled job, but their pay is barely above the minimum wage. Better pay for care workers is a must. Compared to using an agency, in my experience employing directly, using Direct Payments, gives a better standard of care and is cheaper for the local authority. I have found many social workers want to do a good job, but often their hands are tied through lack of funding. They write a care plan which then goes to panel for the funding to be agreed. What do the panel know? They have never met the person. We have seen services change in our area as local authorities are forced to look for cost savings because of reduced funding from central government. Independent Living Fund funding was stopped in June 2015, it took until July 2016 before the local authority made up the difference and it was not back dated. Earlier in the year this particular local authority held a consultation on a proposal that for anyone with a care package of over £500 per week, they would look at putting that person into a care institution, regardless of age. This was to save money and no mention was made of the wishes of the person involved. Where does “Care in the community” feature in this proposal? Services could be improved if more support was given to help those on direct payments. If this was easier more people would be inclined to go down this path. At one time the local authority funded a support charity to do just this, but their funding was stopped. The charity had a list of care workers looking for jobs, would follow up references and do Disclosure and Barring Service checks. All this information was available ahead of interview, which made the process much quicker. When someone resigns, a month is not very long to recruit a new member of staff. The major challenges facing the sector is lack of funding, and there needs to be more joined up thinking between health and social care. If someone is kept out of hospital through good care in their own home, it is assumed that they have no health needs. The distinction between “Continuing Health Care” and “Social Care” needs to be abolished and the two brought under one umbrella, but properly funded. Care agencies provide poorly trained staff and fail to give consistency of workers, so they cannot provide the standard of care required. CQC do an appalling job; I have known an agency, that we were using at the time, to get a glowing report from CQC, whereas I would not recommend them as they failed in terms of consistency and training. CQC only do a paper check and never actually observe a care worker doing their job. They may have done the required hours of training, but there was no check that they were competent. Care worker qualifications need a major overhaul. It seems it is all course work. They can look up the answers on their mobile phones and fill in the questionnaire. There is no check that they remember what they have just read. There is no practical assessment or written exam. I would suggest both are needed. [edited to remove abbreviations]

I am a Personal Budget holder I have had persistent problems with my local authority providing funding to the agreed Personal Budget level. This has meant on several occasions I have been unable to pay for my care when it becomes due which is stressful and has had an effect on both my care and health. The personal budget system works well when running smoothly but the moment a problem occurs I have found the system falls apart rapidly. My main PA got ill and went long term sick and ultimately was dismissed 18 months later on Ill Health grounds. The Personal Budget system failed to cope either the funding or employment processes of this issue. It led to a severe decline in my health meaning extra care was required. I have been unable to recruit Personal Assistants as I was unable to offer permanent contracts a problem which still persists after 30 months. My Local authority has not confirmed my new Budget Level despite it been in place for 8 months now. The impact of a recruitment ban has meant I have been unable to utilise my budget correctly. The council insists on retaining control by repeatedly reviewing my care and not authorising my budget on a basis of more than a few weeks. This is causing undue stress. In the last 18 months I have employed 12 different PAs as I cannot retain staff. I have so much employer burden placed on me that it has become unwieldy for someone who is mainly bedbound. It is now very difficult to get Personal Assistants at all and my care has been in constant crisis for nearly 12 months.

I had to access Adult social care for my elderly mother firstly in Greater Manchester and after moving, in Somerset and the service provided was very different, Manchester was much better. I had no problems accessing Social Services and they were very helpful. The carers have all been very good and were under a great deal of pressure. In Somerset the management of the care provider was terrible, the girls often didn't arrive on time which is very distressing for the person waiting for care and they would often send a male carer(even after my complaints) which was unacceptable. It is important to try and keep to the same group of carers, it speeds things up because they are familiar with the clients needs. The care providers are understaffed and until the carers get a decent wage will continue to be so.

I work in the Gloucestershire area with 800 elderly and disabled people who live in sheltered accommodation. All on site support workers and associated services have been terminated but the service charge is still levied as part of the rent thus cannot be withheld. The repercussions of this action has seen a loss of independent living, greater isolation and increased depression. We have tried to fund a replacement service but because the service charge is still being made double funding has proved impossible. We have tried to seek support and advice from both local and national bodies but are either ignored or passed onto meaningless complaints procedures. The landlord has saved about £1m per year but we now find that much needed sites ( The waiting list is over 500) are now being sold off for redevelopment and the elderly and disabled residents are being forced to move. Local Adult care staff have also seen budget cuts and the part time independent service is limited and part time. We are receiving notifications of calls for carers are now taking weeks or months for a response. In some cases this delay is too long. Independent support is too expensive and everyone is aware that to seek additional finance will put your entire benefits at risk.

My local Council's assessment process seems arbitrary. One person I know of receives 18 hours per week of support to help her socialise successfully (she has no significant physical needs). I live alone and my family are scattered across England and Scotland (and soon the world). When I asked for help to socialise, I was told: "Well, you've got Skype, haven't you?". This felt like a crushingly heartless thing for the officer to say.

My local Council recently outsourced advice and support services for personal budget holders to a private company based in North Wales (I live in England). At a meeting held shortly after the contract was awarded the company admitted that none of its staff are indemnified against giving wrong advice. This places an unreasonable burden on vulnerable people who may get things wrong and be taken to an employment tribunal despite seeking advice from the Council's contractor. The company also promised to establish and maintain a Personal Assistant Finder. I used this once but it has apparently been discontinued, making it more difficult for personal budget holders to find suitably qualified and trained staff. This company, and others like it, only seem interested in winning customers for their payroll service and are very poor at giving advice.

Statutory guidance states that the hourly amount given as a personal budget should be an equivalent sum to that paid by the Council for "local quality care provision". I receive £8.50 per hour for weekdays and £10.00 per hour for weekends. Yet, the Council pays domiciliary care agencies £12.20 per hour and this rose to £12.92 per hour on 8 August 2016. This is clearly unlawful. I cannot work full time as a result of my disability but I do engage in part-time work under the ESA Permitted Work (Higher Limit) rules. However, the charges for my social care are too high to allow me to afford to employ someone to help with employment support at times when I do not have an Access To Work award. I am therefore in a position where I cannot afford to work and have no choice but to go full time if I want to continue working, even though this is likely to damage my health.

trying to access social care is really difficult with the first point of contact being the access team who often make judgements on the phone. I have been told things like we no longer do carers assessments and we no longer send forms out for you to fill out in advance.You are told someone will get back to you and then you do not hear anything at all. when you phone back to chase up your referral you are told that they are very busy and that you must wait some more. I waited 14 months! I had to phone several times. Eventually someone came to my home and filled out a form for me and then I had to wait again for several months before I got a care plan which was full of mistakes/missing information. I never had the follow up assessment and had to phone up about having the review several times and then had to wait again for so long that they had to start the process all over again meaning I missed out on two reviews. I am a disabled carer and when I asked about having a separate needs assessment as well as a carers assessment I was told that unless I want people coming to my house to wash and change me then it would be a waste of time. I would say the service is non existent and in chaos.This treatment made my health deteriorate.

Hard, harder even harder still. having to jump through hoops to get your entitlement and being debased at the same time. Care really does not enter into the vocabulary at all. Those involved should care, not just about reaching targets, or getting paid, but about the people that are in need. Listen to them, understand them help them. one day they may need to be on the receiving end. For now the whole scheme seems to be one designed to get as many people off the benefits they are entitled to by making it harder and harder to get them. As for services, again a complete misnomer. Any request for help seems to be beyond them to answer. I for one feel a third class citizen simply because I have an incurable condition.