Response to Spring Budget 2017 - the social care crisis is a dementia crisis

Alzheimer's Society campaigns team responds to the news of the Spring Budget 2017 and the Green Paper outlining long term social care funding.

We all know that a sticking plaster doesn’t heal a wound.  This is why the announcement today of a Green Paper, to sort out long-term funding of social care, could be a much needed ray of hope in what has been a dark time.

If we’re optimistic, it is a sign of much needed leadership, though long overdue, from national Government on this issue. But they must follow through and deliver change that fixes a broken system for people with dementia, and ends the disgrace that is the current state of care in this country.

Dementia care and social care are, largely, the same thing.  Where other conditions need medication or devices to alleviate symptoms, the symptoms of dementia affect people’s ability to do day to day things – washing, dressing, eating.  With no cure on the horizon and few treatments, people with dementia are relying heavily on care to meet the basic needs caused by the symptoms of their disease. Social care is the only treatment they have for their disease. Further to this,  people with dementia are the majority of people receiving that care – they make up over half of people receiving care from paid carers in their homes, and are nearly three quarters of people in care homes.

The Spring Budget today was an opportunity to take social care, and therefore dementia care seriously. Since 2009, there has been an estimated £4.6 billion cut to the social care sector. It’s had a devastating impact. Services are stretched, corners cut, and mistakes on the rise.

For people with dementia the results have been catastrophic.

Jane, who has advanced dementia had only poorly-trained, stretched homecare workers. Out-of-date food left in the fridge made Jane sick, and she went unwashed for weeks at a time. One day her granddaughter Charlotte tried to visit and discovered Jane had been admitted to intensive care. A homecare worker had found Jane face down on the bedroom floor, barely conscious. The out-of-date food had caused regular diarrhoea, and coupled with poor hygiene, Jane had developed a urinary tract infection.

If either the infection or Jane’s attempts to communicate her pain had been noticed she could have been easily treated at home. Instead, Jane spent 12 weeks in hospital. The incident made Charlotte and her family lose all faith in the care company who sent carers to her home, and when Jane was discharged she went in to a care home.

Jane isn’t alone. Across the country lack of funding is causing neglect, suffering and putting people in hospital when they don’t need to be there. The NHS is getting pressure from both sides – more hospitalisation when care goes wrong, and nowhere safe to discharge people with dementia when they’re ready to leave.

Even worse, people with dementia and their families are being overcharged for the care they do get. Families relying on local authorities for support are now forced to top up their own care, and due to local authority shortfall, self-funders are paying even higher bills to cross subsidise.  People who were promised a ‘cradle to the grave’ welfare state have to sell their homes to pay for their own care.

But today there is some reason to hope.  After furious campaigning by Alzheimer’s Society and others, the Government announced some additional money for social care, and a Green Paper later in the year.  While the £1bn announced for 2017/18 is only half of what is needed, this is the first indication of long overdue national leadership.

We are still a long way off and meaningful change will take time.  Until such long term structural changes are in force people with dementia will still have to pay for their own care, topping up or selling their family homes to do so.  There will still be carers missing operations – much needed to keep them fit and well - because they can’t get help to look after the person with dementia while they are in hospital.  There will still be people with dementia unintentionally suffering at the hands of a rotation of overstretched and poorly trained care workers. What has been announced may be just enough to stop a creaking system collapsing, but it is not enough to deliver the care that people with dementia deserve.

This stage only a chink of light. But what we now have is that ray of light. And even more reason to call for greater support for our campaign to Fix Dementia Care.  For many people with dementia, social care is the only treatment they get for their disease.  They deserve better.

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The East London Borough where I live, carers are left very much to carry the can if things go wrong. This not only causes duplications and waste of funding but leaves patients living at home fending for them selves. The head of three boroughs states that contracts are between the individual carer and the patient but there should be no written agreements between the carer and the patients, as on large packages there is a need for more than one carer, it could be eight to ten carers to cover a two carer, four times each day. By having written agreements/contracts there might be a case for stating the people concerned in the co-operative might be accused of acting as an unregistered care agency. When you are caring for loved ones the extra stress involved in getting proper carers who continue to attend every day is one stress too far. What about a proper system for the carers that will provide a unified system that can be monitored and audited in an acceptable established standard for all that does not rely on the ticking of boxes in the knowledge there is a desperate shortage of carers, which in turn is causing bed blocking in hospitals. Using Care Agencies means that funding will out of necessity need to increase to meet the additional costs incurred by agencies.

Although the extra funding announced in the spring budget is very welcome I am concerned that much of it may go straight through to pay for increased fees by the private care home industry. They have already passed on the forthcoming increase in the living wage rates and will certainly see this increased funding as another opportunity to hike up their fees ( and their profits )
This must be resisted by the NHS and Social Services. The extra money must go towards more and better quality care.

Agree. End privatisation of care homes and care services.

Yes much of what you say is sadly true, but instead of castigating the Govenment in this manner surely we should be encouraging those in power to continue the awareness now evident......., less stick - more carrot.
We have suffered similar problems in our family and firmly believe this is a natural resonsibilty for family and friends to shoulder, leaving those less fortunate to call on the State.
A "Caring Society' is needed right across the board.

Privatisation of care services and care/nursing homes is the root cause of neglect, cruelty and funding crisis. They are unreliable and close at whim which results in decline in resident's health because of relocation and unfamiliarity. There is a conflict of interest between welfare and profit making. The greed of private care companies can never be satisfied (they are paid more than enough for each resident) and no amount of money paid to them by government, top up fees by family will every satisfy this greed or improve care. Private care companies can do as they wish with people and get away with it. There is no will or way of adequately holding them to account unless you are rich enough to pay legal fees and nobody is in that position. We need a bit by bit reinstatement of statutory care and statutory care/nursing homes so at least there is a mixed economy of care. There would be retention of staff as well for staff find it difficult to remain working in an environment where they themselves, as well as the residents, are badly treated by private care companies/care homes. It will take government planning and budgeting. The downfall of social care came with the introduction of privatisation during the Thatcher years and was never meant to reach the full scale privatisation of care that we have today. BRING BACK STATUTARY CARE AND STATUTAT CARE/NURSING HOMES

One of the most galling parts of paying full cost for care ( currently £950 per week) this also seems to be topping up the funded places for which the local authorities pay considerably less and get the same dare. Again those who scrimped and saved to buy a house and now have to sell to pay for ongoing care, are supporting those who didn't or couldn't.

Sorry typo! "Same care"

my brothers wife has alzheimers he looked after her for years at home while he could but as she got worse it all got too much for him he had no life at all. she went in a care home once a week overnight to give him a break but now she is in the care home full time and because he worked all his life and was careful with his money he has to pay for her care something like £22,000 a year while his savings run down. that is where it wrong if you save and own your own house and are careful you pay but if you don't work or don't save smoke or go drinking and squander your money you don't pay that is what is wrong it is not fair at all keep up the good work

It is not about whether you worked ,saved or enjoyed life, my wife as worked for the nhs for 34 years she gets £73 per week esa ,has had alzheimers for 4 years she is just turned 59 . as i am her carer ,we both now cannot work .if you money is under 14,500 you do not pay,over 14,500 -23,500 you a percentage anything over you have to pay all ,but that is just on the person cared for money . Funding as been cut at the day centre were my wife goes to.So we raise funds for them to help out.

You are so correct in everything you say ,don't work ,don't save get everything free but if you work and save you pay I know because my husband is suffering from dementia and if I need a two hour break ( for eg) I have to pay just over £52 ,I don't have thousands in the bank I have my home which I worked very hard to own ,too much money spent on admin and care given free to those who did not contribute to the system this surely is not correct

I don't have £14.ooo but I have to pay for my husband

I feel so strongly that something needs to be done for peogle suffering with dementia NOW. They have no rights and we are the only voice they have.

My mother has suffered with dementia for the last 15 years which has given me an insight into many aspects of care offered from home carers, daycare and carehome facilities. The lack of caring and understanding in all these areas is frightening. I have visited many homes and most you wouldn't feel comfortable leaving your dog.

Any complaints system is closed and you never get a response whether you make the complaint to the carehome, social services or the POVI team.

Caring for someone with dementia can be so frustrating.

We are lucky that my mum is in a good home, although there have been problems and there is nowhere to go for help.

I know there are a lots of really good caring people our there trying there best it's just a shame that good practice can't be identified and shared.

Same experience. Totally agree. We need statutory care homes. Private care homes bully and punish and are not accountable

No matter how we try we are not making much progress in getting rid of the stigma attached to Alzheimer's or other dementia. Why don't people realise it is simply an illness affecting the brain unlike pneumonia etc which affects other parts of the body. If we break a bone the limb is affected where if a tiny part of the brain breaks it can affect various parts of the mind and body as it is the bodies control centre Ike the motherboard Ina computer. It is no bodies fault and until they can do something about it we're stuck with the resulting incapacity. It takes a lot of care and patience to care for this illness and the careers are stuck in a time warp something near to hell if we can't provide help or the money to supply the care and for people alone everything.

There will never be any improvement in care for patients with dementia as long as the condition is seen as a social problem. It is a medical problem, a neurological illness and should be the responsibility of the NHS and needs specialist nurses in just the same way as there are specialist cancer nurses and diabetic nurses. Carers however kind and consciencous simply do not have the level of knowledge to deal with this difficult neurological disorder.

As much as I admire the campaign, I feel that it is not strong enough to convince the government for more financial aid. My husband has Alzheimer's, and as I was unable to cope after several years, he was admitted to a care home, unfortunately, after only a few hours he suffered a fall, resulting in a broken neck, and was immediately taken to hospital, where he has been for five weeks........the staff have been wonderful, however, there is nothing more they can do for him, and as there is no place available at the hospice they wish to return him to the previous home where the neck incident occurred, for end of life care......I am at the end of my tether, and pray, before he leaves the hospital he will die peacefully in his sleep, particularly after browsing the end of life procedures on the internet. We do not have the finances to make his life more dignified and easier in his last days,and it is breaking my heart.

It would improve things for patients and carers if LAs and health trusts were responsibly for ensuring needs were met as well as assessing and funding. A lot of time and money is spent assessing needs and then trying to agree between LAs and NHS over whether people meet CHC criteria. CHC is a big factor because NHS reject so many dementia cases it is left for LAs to fund. A big premium is then paid to agencies for providing carers who receive less than half of the hourly fee. It is very difficult to find paid carers where we live - the low wage and type of work is obviously not attractive. Social worker drew up a care package last summer but cannot find agencies to fulfil it. I tried ringing all of the agencies only to be told that they do not have anyone in our area to meet my husband's needs. As a consequence I am currently very tired and sleep deprived and I have my own health needs which I neglect. This is true for many carers.

Dementia is an umbrella term for a wide range of symptoms caused by progressive disease causing irreversible damage to and death of brain cells. Being placed in the "older peoples and mental health teams" is unhelpful. I have (several times) asked our local NHS trust and LA to set up a dedicated dementia team including a Young Onset Dementia team. I also question why there are no neurologists or dementia trained psychologists in local teams rather than old age psychiatrists. Would this help us? I have found that being under mental health has in the past implied the chance of recovery and for CHC purposes the need for my husband to be breaking up the house or a danger to himself or others before they will consider him as having a "health need"

I, too, feel very aggrieved about the lack of care for those suffering with Dementia.

Why? Because my mother was diagnosed almost a decade ago with this terrible illness, and it has been heart breaking seeing the decline in her physical and mental states, especially over the last four or so years. A decline to the point where she is incontinent and doesn't know when she needs the help of her carers. It is also very difficult getting her to eat and drink, let alone taking her medications.

I am her nominated carer, but am severely physically disabled myself and have always said that I couldn't cope when she got to this stage. A daughter might be in a different position to a son, but unfortunately, mum only ever had boys! However, even as her memory gets worse, and she resorts to punching me at times, and talking absolute rubbish but expecting an answer, there is no way I will consent to her being placed in a care home, as I wouldn't get to see her at all then.

Quite what she is thinking about worries me more than it seems to do her. She will sit for hours, in her own little world, even when it has gone dark, reading any piece of paper with writing on it, but she does so out loud, and repetitively to the point where I just have to turn off. This makes me feel worse, and I thank goodness for the times when the carers are here.

Sadly, my parents have been estranged for many years, although they have continued to live in the same house. Father is something of a hypochondriac, and has made absolutely no attempt to get an understanding of the illness mum suffers, nor how she feels or what she is thinking of. He has started attacking her carers as they unlock the door (yes, we have reached the point where we have to keep all external doors locked), not physically, but with his 'ailments', and despite my telling him many times that her visits are time limited and there is no spare time to help him, he uses his deafness as an excuse and continues as if nothing had been said.

The carers have nothing but my absolute admiration for what they do, and how they care for and treat my mum. She has four calls per day; 45 minutes to get her up, washed, dressed and fed, and then putting her washing, including bedding into the washer, all the time trying to prompt her to eat and drink. Then it is emptying the commode and changing the bed before dashing off to their next client.

30 minutes at lunch-time to feed her and do whatever toiletry is necessary, despite some vehement refusals at time from mum (these are usually at times when she most needs help in that department), emptying the washer and finding space to dry her clothes and bedding.

At tea time that is when we usually have our hot meal of the day, and once again the carers have just 30 minutes allocated to basically repeat the lunch call.

There was a time when I would prepare her meals, but as with her medication, it became more and more difficult to get her to do anything I wanted, and that was the point I just had to call for help. Even now, if she thinks I have cooked her meal to help the carers, she will refuse to eat it.

Finally we have 15 minutes during which time they have to get mum upstairs to her bedroom (and believe me, there are some nights when this is no easy task, as she will keep stopping and finding anything she can that 'must' be done before going to bed.) Getting her changed isn't easy, unless either the breakfast or lunch time carers has had the time to 'prepare' everything needed for bed time.

Although I receive a schedule each week of which carer is coming, and at what time; these don't always tally with the actual visit, and this only serves to confuse mum even more. Calls to the carers base to enquire when a carer is going to call are not always responded to despite promises to the contrary. There have even been times when my medications have 'kicked in', and I have fallen asleep before the carer arrives.

Most of the carers who we see regularly are over-worked and under-paid. I wouldn't fancy having to get up at about 05:30 to 06:00 in order to be ready to start work at 07:00, not getting a lunch break of any description, and no rest breaks, before finishing on more than an occasional basis, later than is good for their own health. I am talking here of any time up to 01:00 the following morning. And then grabbing a precious few hours sleep before repeating the same schedule.

The comments I have heard include "they do get a break - in between visits to clients." That is not a legal break, as they are multitasking (i.e. driving a car), and everyone is surely, by law, entitled to an hour's break for lunch?

No matter which party holds the key to the money chest, we have heard promises of additional money for dementia suffers for so many years that I have lost count, and yet the actually per capita payment received has fallen in real terms to a point that a massive injection of cash will only go partly towards solving the problem. The only solution is a total rethink of care as a whole instead of arguing about leaving Europe and wasting money on second homes for politicians who are already over-paid and under-worked.

You are so right. Of course governments (E,S,W,NI)take advantage of us unpaid carers who save them billions of pounds a year. The division between Health and Social care should be done away with anyway.

My husband has suffered from Alzheimer's for the past 7 years and now requires help with everything. I don't think anyone with dementia should live alone it is too risky. And carers cannot possibly manage calling in three times a day in the time allotted and keep the patient safe, clean, Fed and happy. Whoever gave these timescales should be ashamed and try them.

I was diagnosed with "Early onset Dementia" approx. 3yrs ago, my with has had a lot of trouble with her Ankles (amogst other complaints) and, is scheduled for Ankle Replacement surgery in approx. a months time. We both worked, me 35yrs with Royal Mail, my wife, her parents' business. Before all this kicked off, we'd never asked for assistance, except when I came out of hospital after a 2 month stay and, that was all down to the very helpful social worker. (That only lasted a week). So, the "extra" money the Gov. is giving, spread over the whole country, over 3yrs is just a pinprick in the provision of Care.

Presumably, you won't have had to seek the assistance of carers yet, but we have to contribute for mum's care.

On the same day that the government's 'generous' announcement was made, we got our Council Tax bill, and this year I noticed an extra charge on it. An Adult Social Care Precept (i.e. a charge the local authority can make without going through a referendum - in other words we're being robbed by any other name). Basically a contribution (£60 on band D properties) towards care costs for the elderly and infirm.

So now we are paying the career home charges for the carers, AND this levy to the local authority.

I said it before, and I'll say it again. Fire them all, and concentrate on getting the urgent matters sorted out before wasting time and millions of pounds on getting out of Europe!

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