BBC Panorama - what’s the human cost of dementia care?

Discussion in 'Dementia-related news and campaigns' started by SophieD, May 29, 2019.

  1. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    946
    London
    Hi everyone,

    Today - Wednesday 29 May - at 9pm, the BBC will air the first of a two part series that looks at the state of social care in Somerset. Are you planning to watch the programme?

    BBC Panorama was granted full access by Somerset Council in the interest of showing how constant financial and resource cuts are negatively and unfairly impacting people who need care support. Both episodes include stories around people affected by dementia.

    Episode 1, Who Cares, is on tonight. It focuses on Rachel who is in her late 30s and cares for her mum full time. Her mum has incredibly challenging dementia which causes lots of sleepless nights. Due to council cuts, the only respite care that Rachel receives, two days a week, is about to end, meaning minimal care support for Rachel or her mum.

    Find out more about the programme

    We know that people with dementia and their families are being let down day after day by a broken care system – a system that fails to look after them as individuals. The social care crisis is a dementia crisis and we need a Dementia Fund.

    We are standing up for people who need better care, will you stand with us?


    [​IMG]

    --

    Panorama: Crisis in Care Part 1 - Who Cares? airs tonight, Wednesday 29 May at 9pm on BBC One.

    What are your thoughts on the programme? Have you had similar experiences?

    Please share your experiences below.
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    I'll watch the program first and then comment if ok. Its certainly something I feel very strongly about.
     
  3. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    946
    London
    Absolutely @Palerider. I'm sure the topic resonates with a lot of our members and we welcome you to share your thoughts and experiences on this thread.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,680
    Female
    Scotland
    Poor Rachel. Losing the small break we get fills me with dread. I will watch it on catchup.
     
  5. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,369
    Kent
    IMO all the cases shown had a clear medical need for funding and until or unless it is seen as medical need rather than masked under social care and funded by central government nothing will change. I was however glad that for once challenging dementia and being looked after by family full time was shown together with showing the impact of this on the carer and difficulty of finding a day placement when being refused by some because of the behaviour. Difficult for the council in having to make cuts which had clear impact on so many. I was left with the feeling of sadness and hopelessness in a no win situation of limited funding available...I hope next week's programme offers hope where there doesn't seem much.
     
  6. Baker17

    Baker17 Registered User

    Mar 9, 2016
    237
    I have just watched the programme and I am so angry because my local council must have wasted tens of thousands of pounds on my husband’s case all of it unnecessarily. I’ll explain as briefly as I can, my husband went into a home two years ago unbeknown to me his son complained to SS about the distance to travel (half an hour) it ended up with an advocate being appointed for my husband who decided that my husband wanted to come back to his home town, she has nodementia training and doesn’t know what dementia sufferers talk about going home means. It went to the COP and the judge in his wisdom decided, after he saw my husband and he sang singing in the rain to to him and asked the judge if he’d like to go for a pint, that he should be moved. The son said under oath that he would visit everyday so my husband was moved for a trial period, this was double funded by the council to keep his original place open for six weeks. The advocate decided he’d settled, not the experience I found when I visited him. Well it was decided he should stay by the court, in February the new home said they wanted him out because they couldn’t cope with him and the son visited every three weeks for an hour, I have to go everyday because the home can’t get him to cooperate with personal care. There have been four meetings since February involving SW’s, adovcate, CHESS team, I’ve been tasked in looking for another place, the original one have assessed and said they are happy to take him back, the next meeting I really hope they agree to this. I am angry because the amount of money this case must have cost the council could have been better spent looking after someone who needs care and is not receiving it and they are saying there is not enough money, and they have wasted it in my case.
     
  7. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    144
    Male
    South Northwest
    Isn't it strange, I deal with my mother's confusion and distress daily almost without thinking twice now. But watching someone else in very similar circumstances moved me to tears. Bless Rachael and her mother... how rare and 'welcome', in a horrible kind of way, to see some hard dementia truths shown on TV.

    It's a difficult watch all round though. Despite my socialist inclinations, I know it's really not as simple as saying 'pump more money into care'. This care crisis has been creeping up on us for a generation or more, not just while one government tried to deal with the near collapse of the global economy in 2008/9... a near collapse which was only swept under the carpet, not solved. Which makes things even more depressing now that we've been in 'recovery' for far longer than most economic cycles last.

    Even if it was a simple choice (turn on the money taps!) there's no magic wand to generate committed staff at decent wages, let alone the wages that care as an 'unskilled' profession attracts. Caring has been devalued by society for too long. But while we measure success in house prices rather than free time to help the traditional extended family structure which used to BE the care system, there is no answer.

    Which is why I chose to take on my mother's care for as long as I can; I have no faith in there being an external solution to the care problem. People always say they're in favour of paying more tax to pay for valued services, but the real cost and real tax levels would have most people running in the opposite direction at the next general election.

    The world's a mess, isn't it? And yet we always have to remember that no matter how 'bad' things might be here, we are still so, so, so much more fortunate than much of the world's population. I try to hang on to that on bad days. Yes, sometimes I feel isolated and hopeless, but I feel so fortunate that taxpayers are putting about £300 a week in pension, Pension Credit, Attendance Allowance and Carer's Allowance into this household. It means I don't have to worry about the basics at all, which is a luxury in real terms even if it's easy to lose sight of that sometimes.

    Mmm... this is one of those posts I feel inclined to delete and forget, but what the heck. What's the point in being sleep-deprived and gloomily reflective if you can't use it as an excuse to indulge yourself a bit? :)

    Take care out there, everyone. The sun will rise in the morning, the blackbirds will sing, and we will survive another day... or at least pop in here to have a moan about not surviving. Which is, in itself, a form of surviving.

    I did say I'm tired, didn't I? No mention of polishing off the last of the Christmas Port to drown my birthday sorrows. ;-)

    I think you know where I stand on that one. :) <-- that's a resigned smiley, but I don't know the emoji for that.
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #8 Palerider, May 30, 2019
    Last edited: May 30, 2019
    I also watched the program and found myself agreeing with the presenters comments at the end as well as being moved by the journeys those in the program have had to endure. I don't think anyone with a genuine care need or need of support turns to social care unless they are struggling and can't 'self fund' all or most of the care. For many, and myself included giving up my own employment isn't an option either, I like many have to keep going -come what may. Mum is still waiting for a basic package of care, which has been out to brokerage now for two months and its not looking promising. I empathise with Rachel in the program, her and her mums reality is also mine. The system is so broke, that even where funding has been agreed, there are no services left to provide the care, thats my experience to date.

    I think that as a civilised society we have to ask ourselves what is it that we want and whether we are willing to pay for it or at least resolve some of the issues we now face (not forgetting what we do now, will also affect us and our children in the future).

    The Health Foundation (2016) reported this:

    "Pressures on publicly funded adult social care are projected to rise by an average of 4.3% a year, using modelling by the London School of Economics. We assume that between 2015/16 and 2019/20, social care funding may rise by an average of 1.6% a year, based on projections for England including funding from the new council tax precept and additional investment through the Better Care Fund. Between 2019/20 and 2030/31 we assume that funding will rise in line with projected growth in GDP.

    Under these assumptions, there would be a funding gap of £9.2bn for adult social care in the UK in 2030/31, worth 40% of the projected budget." Source: The Health Foundation (2016)
    An estimated £9.2bn funding gap by 2030, that is huge!!. Will more people with dementia be home alone, with no support in the future?. The Kings Fund in 2016, a highly regarded 'think tank' published a document titled: Social Care for Older People: Home Truths. The authors of the document raise some important questions about the future of the social care system and also raise issues concerning carers as well as those they care for. The link is given below:

    https://www.kingsfund.org.uk/sites/...ial_care_older_people_Kings_Fund_Sep_2016.pdf

    One particular key point (written three years ago) supports the Panorama program. Source Humphries et al (2016; p5):

    The funding outlook for the next five years looks bleak. The measures announced by the government will not meet a widening gap between needs and resources set to reach at least £2.8 billion by 2019. Public spending on adult social care is set to fall to less than 1 per cent of GDP. The potential for most local authorities to achieve more within existing resources is very limited and they will struggle to meet basic statutory duties.​


    But the problem isn't just about money, we have an aging population, and some estimates forecast that Alzheimer's will have tripled (8 million) by 2050 in the US alone (Wueve et al, 2015). While in the UK it is expected to reach 2 million by 2051 (Alzheimers Society).

    I think we are going to need a social care system of some sort, long into the future that supports people with dementia as well as other needs.

    I have signed the Alzheimer's Society Petition at the start of this thread -lets hope it makes a difference:)
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,680
    Female
    Scotland
    I would like to share this petition but abhor Facebook. Can you put a simple email or messaging link please.
     
  10. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    946
    London
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,261
    Female
    South of the Border
    I live just half a mile from Somerset - in Devon. I was very interested in what the Head of Social Care for Somerset had to say. He seemed very fraught with the cutbacks in his budgets and his lack of resources to support funding the care of older people.
    Last Sept. I attended a meeting at Devon County Hall, which I found extremely intimidating and, frankly scary. I, and one other lady, were trying to make the committee understand the difficulties caused by lack of social care support here in Devon.
    I subsequently received an email, from someone on the behest of Devon's Head of Social Care - and this is my point - this Head of Social Care, in exactly the same position as his counterpart in Somerset, actually had the lack of insight and humanity to think that only (quote) " two or three carers in the whole of Devon have difficulties."

    If two adjacent counties can have Heads of Social Care with such profoundly different attitudes to their tasks - how on earth can the whole country be 'joined up'???

    I could have wept for the poor Dad, Dave, trying to look after triplet 3 year olds and a 36 yr old wife in extreme disability and constant pain from arthritis.

    What a programme, and so brave of the people concerned to bare their souls for the cameras in the hope of showing the country what life is like as a carer.
     
  12. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    316
    Female
    High Peak
    It was good to see a 'challenging' person with dementia for once. The old lady's constant anxiety and need for 24/7 care was clear. How her poor daughter copes is beyond me, though she was clearly struggling.

    One thing that really wasn't covered was people who are self-funding - how we are just left to 'get on with it' and organise everything ourselves.

    A particular bugbear of mine (again not mentioned) is the fact that most care homes will not accept the very basic LA limit requiring family to pay a top-up (not mentioned) but it also means they (the care homes) have to claw back the shortfall by charging more to self funders. My mum's care home does accept some LA residents for which they are paid around £570 per week. Mum, in an identical room, pays nearly £800 per week. THIS IS TOTALLY UNFAIR!
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,364
    Female
    I haven't watched yet, I will catch it on iplayer. I saw an interview on BBC breakfast yesterday with a rep of the Alzheimers Society and a carer (Rachel, I guess?)

    @Jaded'n'faded I didn't mind having no SS support - I suspect their 'support' would have been obstructive, insisting she stayed in her own home way too long. I count my mother as 'lucky' as self funding gives options. She too pays £800 for her CH. The LA used to be the CH's biggest client, but they no longer accept LA clients because they cannot afford to do so - I believe our LA pays less than £500 a week. So the CH appears to be charging £800 not in order to subsidise, but to provide good care.

    I actually hope she is 'subsidising herself' and when her money runs out they will keep her on at LA rates. If they don't, I can't top up so will have very little control over where she goes, our council has cut services to the bare legal minimum in order to avoid going bankrupt, so it ain't going to be anywhere nice. I really dread her outliving her funds. As @Andrew_McP has said, I can't see a solution. Even throwing money at it, which won't happen anyway, wouldn't necessarily resolve it (thank you for not deleting, Andrew).
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West

    I agree. If mum goes into care her home will have to be sold and she will be self funding, for however long that lasts (? 4 years). It is very much a catch 22 as things stand. I also worry when that money runs out what will happen if mum is still going, where she will end up.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,199
    East of England
    I am watching the Panorama report on Somerset Social Services problems and the daughter caring for her Mother with Alzheimer’s was a reflection of my day getting my husband’s personal care attended to. What a shocking inditement of the state of affairs in this country the whole program is! The thing that struck me was that this situation is only going to get worse and the price we pay is a lot more illness among the people who are looking after their family with the increased pressure on the health service.
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,151
    It seems successive governments have saved pennies to waste pounds, since 2010 the pace has increased. I felt angry then tearful as I saw the people and their suffering.
    Carers UK sent a petition by email, I click and a letter went to my MP. I hope to find time to follow it up by a personal letter. I just felt stunned afterwards, even though it was what I expected.
    It needs a cross party plan to ensure the next PM will not swing away from a decision.
    It should be treated with funds in the same way as any severe emergency would be.
    I feel that the hidden cost on Carers health and well being is totally ignored. It seems Lies Lies Lies are the order of the day. People are tools taxes can be cut at what cost?
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,151
    Many homes are 12 to 1400 per week around here and extra nursing/care is an extra, non profit making are about a 1000. Plus of course extras. The Council commissioned beds are a long way from us. Last night I had a dream I had an extra room I did not know about for a Carer! I woke before I found the pot of gold!
     
  18. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    616
    Female
    Exactly and how many others? I sadly suspect yours is not an isolated case. Heartbreaking and totally unnecessary.
     
  19. Lawson58

    Lawson58 Registered User

    .
    Governments will always ignore as far as they can the situation of carers because to do otherwise will cost them buckets of money. They know that they can rely on carers to plug on for little recompense so it is inevitable that they will continue to exploit them.

    Unfortunately, we can't go on strike and it doesn't seem to matter how many letters we write, how many emails we send, governments will continue to have no sympathy for people like us.
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,364
    Female
    We can dream (it's about all we can do)!

    The only non-profit-making CH I know of round here is about £550 a week, I viewed it and it wasn't brilliant. It didn't have a reliable locked door policy - the manager cheerfully told me about one resident who wandered off and got a train to Birmingham. And they only wanted early-stage easy residents, a resident who sundowned (pacing, asking to go home) was asked to leave within a fortnight. Wouldn't have worked at all for my mother.
     

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