Why the Budget delivers another cold snap for people with dementia

The Autumn Budget promised more cash for the NHS, but it did not address the ever-widening funding gulf facing our social care system.

 budget-dementia

While the government’s Autumn Budget promised more cash for the NHS, it did not address the ever widening funding gulf facing our care system. It is not realistic for the government to look at NHS funding in isolation. The NHS and social care go hand-in-hand – we cannot fix one if the other remains broken.

Earlier this year, it was encouraging to see the government promise a long-awaited consultation on care reform, which indicated real recognition of the difficulties people affected by dementia and other long-term conditions face. But yesterday’s silence on social care funding means far too many people with dementia and their carers will be left without the right support this winter.

People are struggling in the here and now

People with dementia are currently spending hundreds of thousands of pounds on their care. But the fact they are spending so much is not guaranteeing them good quality care.

Local authorities are increasingly unable to provide people with the support they need because of the lack of money in the system. This problem is getting worse. A recent Family and Childcare Trust survey highlighted that only a quarter of local authorities have enough care for everyone who needs it this year.

We see the Government’s promise of a consultation on social care reform next year as a signal of a growing understanding that people living with dementia, carers and loved ones cannot go on as they have been. But people are still struggling in the here and now.

Too often we hear of people with dementia being stuck in hospital due to the lack of available care in the community. We hear of people evicted from their care homes because their needs are too costly or complex. With over a quarter of people saying that care is worse now than it was five years ago, it is clear that more funding for the system is urgently needed.

Keeping the system afloat

It’s imperative we have the conversation about overhauling our care system to protect people in the future, but a fairer deal could take years to be implemented. We also need to guarantee the system stays afloat in the meantime.

The cost of inaction will be severe with more people being stuck in hospital this winter due to a lack of social care.

While increased NHS funding will help somewhat, without addressing the lack of care and support in the community for people with dementia, the NHS will continue to be under pressure. Families too will be forced to spend thousands this winter on getting the care they need for their loved one over Christmas. This must stop now.

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23 comments

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The Budget again ignored people with Alzheimer's Disease ! There is a way to get Care & this is via Continuing Healthcare paid by NHS , so its not means tested . This is provided on a "Needs" basis , so if the Disease is progressing & you can not manage Care on your own , then put forward an Application via your GP.
Guidance is available on my website https://continuinghealthcare.wordpress.com/
Ensure you assert your Needs as NHS will try to avoid responsibility if they can by underscoring your difficulties . This happens regularly in my experience .
Best wishes to you & your loved one.
Peter Garside

Thank you, Peter, I've look at your website with interest !

My own experience a few years ago with my last mum was that you must not assume things are being carried out properly ....... after mum had passed away we found out that the person who did mum's CHC assessment was infact a ''bank'' nurse, who had filled in the forms at a hospital and she'd never ever met mum....!

Hindsight is wonderful , YOU MUST BE AWARE OF CHC .....

Am currently only carer for my best friend who has Young Onset Alzheimer's and am dreading the battle for CHC for her....... so will be looking at your website for sure !
cheers, Peter,

Good luck everyone,
Sandra.

Hi
My Dad suffered from vascular dementia following a stroke.
Afterwards, although he knew what he wanted to say, his speech was unintelligible.
He was incontinent, partially sighted (due to AMD) and had impaired hearing. He did not know not to touch a hot kettle or fire or to keep away from things that would injure him (knives, broken glass etc.). He was determined and followed his own path with no realisation of consequences. Mum couldn’t have managed him so he went to a care home where he was well looked after and for which we paid.
Now to my point. Although my Dad was a danger to himself, and possibly others, needed 24 hour care and supervision and couldn’t make himself understood he paid care home fees in full.
The assessors said he was not entitled to free Continuing Health Care after his stroke because, although he was incapable and in danger and could be aggressive at times, his needs did not fall under the ‘Nursing Care’ banner but under the ‘Community Carers’.
I fought this decision but was unsuccessful.

But the government have already done consultations and Green Papers ........their flagship manifesto pledge several years ago was to bring in a Lifetime Care Cap in April 2016 , but once returned to power promptly postponed it until 2020 !!!

So, they are going to waste even more money on consultations and Green Papers.... WHAT ABOUT THOSE CURRENTLY STRUGGLING TO COPE WITH THIS CRUEL DISEASE ? WHERE'S THEIR HELP ?

AS USUAL, KICK THE BALL INTO THE LONG GRASS AND WASTE A FEW MORE YEARS......... WHILST THE UK GIVES MILLIONS IN FOREIGN AID......

I would imagine that Theresa May is showing early signs
of dementia as most of her promises, she forgets about

We currently have a government who has no idea.

There is one small and not expensive way the government could help the carers of dementia, that is add dementia to the criteria of blue badge parking, getting around with a dementia sufferer is very difficult, and being able to park near a destination would make life easier for both the carer and sufferer and would cost very little.

This is a good idea

I certainly agree with that. My mum gets confused and agitated if we have to walk too far. However it is just one small issue in a jigsaw puzzle of issues.

I too think that it should be added to the blue badge criteria it’s an illness that doesn’t get any better but it’s given to people for less

Your social worker and your GP can get the blue badge form for you and help you to fill it in. They did it for me and my wife has Alzheimer’s.Also you can check it out with your county council authority.
Hope you are successful, it will be a great help to you.

You can get a blue badge for dementia sufferers, but the application form is worded for physically disabled not mentally.when you apply it asks can the applicant walk certain distances,in my wife's case the answere was yes,so they refused,when I reapplied I then added truthfully that she could walk but required assistance as she was unaware of surrounding dangers and trip hazards so could not be left on her own,this time they gave her the badge,what a blessing this has been because we have to have the door wide open for her to get in and used to park at far end of carparts in case someone parked to close.

Dorset council will supply blue badge for dementia sufferers at a cost of 10pounds.

I agree entirely. If one has to park and pay it is extremely difficult to get a dementia sufferer out of the car while you buy a ticket from a machine. If left in the car there is a danger they may open a door and get knocked down by a passing car.
Life would be much simpler with a blue badge. It's the same old story if you cant see the disability it doesn't exist.

The Goverment need to remember that Charity begins at home NOT in foreign aid.

I just can't see how and why the government will not try to help fight this cruel decease , It seems they are doing a Cinderella with it,sweep it under the carpet, it will not go away, it will get much worse, something MUST be done and done fast, please please please ACT NOW.

The main problem concerning Dementia, is that it affects mainly the elderly, and I think we are all aware of the attitude of our politicians towards the older generation, ......they are living too long, so consequently are being targeted by certain individuals, as a reason for cuts in benefits, housing and NHS problems. I am not surprised that the government are ignoring this dreadful disease, as it is overtaking Cancer as the illness people fear most.

Yet again dementia care is not being acknowledged. Care agencies are making a very good profit on home care. Care agencies in our area currently charge £17.50 per hour with carers receiving around £7.50 per hour of this. Our rates went up by £3.50 per hour last year. They even charge double time on Bank Holidays. That is £35 per hour. People in care homes get a better deal with a set weekly rate. One hour of care at home per day costs around £6,000 per year. A hugh burden for anyone wanting to remain at home with care being provided by care agencies. There needs to be a fairer system with everyone paying towards this. It shouldn't be that people with dementia are having to carry all the financial burden just because they own their own home or have some savings. There should be a fairer funding system.

What else can you expect from "Compassionate Conservatism"? Or "New Labour" for that matter! I well remember Tony Blair's address at Party Conference all those years ago before he was first elected. He stood at the podium, arms crossed, indignant expression, and got a huge ovation when he pronounced "No old person should have to sell their house to pay for care." He's now too busy making a fortune, presumably to pay for his own future care. A few politicians do,in fact,show concern about the plight of those needing social care, but they are never the ones to make it power. I wonder if Jeremy Corbyn would deliver? I have my doubts!

We need to put Social Care back in the hands of Social Services and stop commissioning to agencies whom cost the Service millions Pay their unqualified work force now the basic minimum ,under- stretch the time allowed to deal effectively with each individual. whilest singing the praises of foreign national working in the Care systems my experience both in the professions and the community has been that we are now becoming the foreigners. That is not racist they communicate with each other in their native tongue in your company and are difficult to understand and fain difficulty in understanding spoken English.Out sourcing work is not new I know ,but why do we expect it to work any better in our Social and Health system.

My husband was recently assessed for his % of NHS funding he was worse on three of the criteria. Still same funding as before even after a re assessment vascular dementia is only an illness to some people but not NHS .I am saving the NHS £19,000 thousand a year !!!!!!!!
My husband can't walk talk is doubly incontinent has difficulty swallowing I have to feed him, have carers 3 times a day still get him out he smiles,tries to make noises think he is trying to tell me something.

Dear Kathryn,
Your message is very moving, and I feel great sympathy for you. I have Alz and one day my partner will be in the same position as you. I can hardly think about the unfair burdens put on carers. When you think that there are near a million of us now, there surely must be a national plan to assist carers. It is a national emergency affecting at least 2 million of us! We need to shout loudly and make a real fuss! We are dying too politely! How about forming an Alzheimer's Army of carers and patients to make a big fuss about it? Even a small fraction of us could bring central London to a halt! But I must also say that your husband is deeply grateful for your love and care, even if he can't express it. You are devoting your life to him, and that is a very great gift. He surely knows that, and not only feels immensely grateful but also feels guilt about being a burden to you. This is a burden that should not be yours alone. There must be a national service to help carers like you, and it it must be set up now, or the Alzheimer's Army must get on the march!
Very best wishes, Martin

My Husband has Lewybody dementia is incontinent both ways cannot walk or stand has osteoarthritis in both legs and is suffering with ulcers in between his toes which is very painful he is also on warfarin which I find he feels the cold very badly.
I try to get him out twice a week so that he can get some fresh air but that is limited because getting a taxi or getting the Dail a ride is difficult taxi do not like taking wheelchairs and dail a ride I find it difficult to get I am 87 years old I have to feed my husband do everything in the house and also manage the household.
Carers come in three times a day for 4 days and four times a day 3 Days they just wash him and change his pad the rest I have to do medication cleaning teeth shaving etc I am finding this very difficult but it seems the more you do the more they want you to do where is the help that I need

Hi Doris, thanks for your comment.

That sounds difficult to manage, so in the first instance it's worth reviewing your husband’s care plan. It's also possible to request a carer’s assessment so you can revisit what you are capable of and what must be looked after by the social services community care team.

You can read more about assessments for care and support here: http://bit.ly/2nqhDKE

You can also also report his ulcers and the problems with warfarin etc. to the GP to be confident that he is getting the best medical care too.

There may be local Alzheimer’s Society services nearby that can offer face-to-face help, advice and support, and they may be able to identify community transport that has facilities to take wheelchairs on board. Details can be found here: http://www.alzheimers.org.uk/site/scripts/home_info.php?homepageID=428

You may also find it helpful to visit our online forum 'Talking Point', as other people may have discussed similar issues. There's no sign-up necessary to search through the forum, so you can read other peoples' posts and find out about their experiences. The forum can be found at:
http://forum.alzheimers.org.uk

I do hope this is helpful, please remember you can contact us if you need any further information or support. Our Helpline is open Monday to Friday from 9am to 5pm extending to 8pm on Monday, Tuesday and Wednesday; Saturday to Sunday from 10am-4pm, and can be reached on 0300 222 1122.

We also have a Live Online Advice service which is available Monday to Friday 9am – 12pm: Monday to Wednesday 6pm – 8pm. Click here for details: https://www.alzheimers.org.uk/info/20012/helpline/686/live_online_advice – 52k – 2017-01-12

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