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Shining a light on unpaid carers

Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger

This past week (7-13 June 2021) has officially been Carers Week.  An annual campaign dedicated to recognising the challenges faced by unpaid carers and their contribution to the lives of disabled people and families across the UK. 

A man smiling at his phone accompanied by a carer wearing a face mask

To coincide with this event, Carers Week published new research outlining unpaid carers fears about reduced support as the pandemic continues.  Notably, concerns relate to loss of support from services, friends and family, not having breaks from caring roles and feeling exhausted, unable to cope in the longer term:

 … carers lost, on average, 25 hours of support a month they previously had from services or family and friends before the pandemic.

72% of carers have not had any breaks from their caring role at all. Of those who got a break, a third (33%) used the time to complete practical tasks or housework, and a quarter (26%) to attend their own medical appointments.

Three quarters (74%) reported being exhausted as a result of caring during the pandemic, and more than a third (35%) said they feel unable to manage their unpaid caring role.

What support is available for carers?

  • A carers' assessment by your local authority to look at what support would help your physical, emotional and mental wellbeing.
  • Carer’s allowance if you look after someone for 35 hours per week or more and they receive certain benefits.  If you are working, you need to be earning less than £128 per week.  
  • Support if you work dependent on employer policy, with examples including carer leave, time off to accompany the person you care for to appointments and access to a carer support group.
  • Access to Scope’s family services such as Navigate: providing emotional support for carers of disabled children.
For specialist advice, you can also contact the following organisations:

Over to you

Can you resonate with the fears expressed by carers above?  Has your support reduced since the pandemic began?

Let us know in the comments below.  
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited June 2021

    Lucy Watts MBE also shared the following thread on Twitter for Carers Week, outlining:

    the rights, entitlements and expectations a carer should have, receive or be able to rely on.
    These include:

    3. If you work, you have the right to take a reasonable amount of time off work to deal with urgent situations with a dependent. This may include a breakdown in care arrangements, time to organise new care, or the dependent being ill.

    4. In work: you have a right to request flexible working if you've worked with the same employer for 26 weeks (6 months). Requests should be made in writing. Businesses must have a sound reason for rejecting any request.

    5. Protection from discrimination: In England, Wales & Scotland, if you are looking after someone who is elderly or disabled, the law - the Equality Act 2010 - protects you against direct discrimination or harassment because of your caring responsibilities.

    6. The right to continue in employment. The ECHR "Right to respect for private & family life" covers your right to your own identity, to have friends & relationships, & your right to participate in economic activities, including to work.

    7. Benefits: You may be entitled to benefits such as Universal Credit if you're on a low income, or receive old-style ESA, Housing Benefit, Jobseeker's Allowance. Find out more at: Working age   Pension age

    8. Prescriptions: If you receive Income Support, JSA, Pension Credit, ESA or Universal Credit, you may be entitled to free prescriptions. If on Working Tax Credits, you may be eligible for an NHS tax credit exemption certificate.  Visit Carers UK 'Help with health costs webpage'

    9. You may be able to get support with council tax - find out more at Carers UK Council Tax/Rate Relief webpage. 

    10. Understanding your pension as a carer. If your working life is interrupted by being a carer, this can affect your pension. Find out more on the following link about pensions to understand the rules and entitlements. Visit Carers UK 'Help with your pension/carers webpage. 

    Who is a carer? Do you: - help someone with personal care - take them to appointments - do their shopping - spend a lot of time caring for them - support with health/care (i.e. help them take medicines) You may be a carer - even if you don’t identify as one!

    Carers are as diverse as the rest of us: whether providing personal care, practical support, social & emotional support or health related care. Even a cared-for person can be a carer for someone else. Don't judge what or who a carer is based on your assumptions. #CarersWeek2021

    Visit Lucy's Twitter page to read more about her work fighting for disabled people's equality. 
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    The problem I am haveing is finding someone who can sit with my mum on Tuesdays so that I can have a break and see my partner my mum gets to much money and has to pay everything herself 

    My brother has agreed to pay for carers for the two nights I work he has power of attorney over my mums finances but he said I would have to pay someone myself to look after mum on a Tuesday as he said quote  why can't you get a volunteer like I did un quote 

    Is there any where in wales that may be able to help and advice in the West Glamorgan area 
  • woodbine
    woodbine Community member Posts: 10,424 Disability Gamechanger
    @lisathomas50 have you spoken to your local carers association (if you have one)?
    Seasons greetings to one and all 🎄🎅🏻🌲
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    @woodbine we don't have one here where I am I am going to have a search on Monday things like age concern dementia friends alzheimers help line and we have something called tonna but trying to avoid places where there are to many people as we have high corona virus cases with the delta variant 
  • craftyarts
    craftyarts Community member Posts: 19 Connected
    It has been found that women in the past have been expected to provide the unpaid care for their family. This has made it difficult for women to find a better paid position and this has then affected their standard of living and their pension status . Women born in the 1950’s have been particularly compromised because of this . The organisation WASPI can give you a better insight into this .
    it is about time there was a better social care network for people in need and not rely on family members which will compromise their position in later life or lead to burn out because of working full time and then working long hours doing the cooking , cleaning and personal care tasks .
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    My years of being a carer in the community has hopefuly paid off I have hopefuly found someone to have my mum for 7 hrs every Tuesday a carer who I have worked with and trust and is a good match to my mum as mum used to teach yoga likes walking and going out seeing different things and the person I have found is happy to do it and will let me know for definite on Monday 

    The Tuesday care starts in July  and I also have a night carer for the two nights  sorted out personal products 

    Feel less stressed and alot happier now and ready to have mum here in two weeks 

    I know its not going to be easy and it will change how I live my life but with routine and love and care me and mum will be ok 
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,462 Disability Gamechanger
    Oh that's good news @lisathomas50! I'm glad you managed to find someone you can trust :) 

    And yes routine, love, and care can go a long way. 
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • Jean Eveleigh
    Jean Eveleigh Scope Member Posts: 183 Pioneering
    I receive 16.5 hours a week of paid care via direct payments from social services even though they have acknowledged in writing I need 24 hour care.

    I have a flatmate/lodger who provides me the rest of the care hours I need in return for free board & lodgings (food, bills, sundries, etc.) so in essence, I pay for 151.5 hours a week care out of my disability benefits along with all of my other bills and outgoings.

    If this person was to claim carers allowance I would still be paying them that money as it would be stopped out on my benefits so my income would go down but my outgoings would remain the same and this person would still be receiving less money for substantially more hours than my paid carer receives.

    They get no support from carers services nor do they want any that are available, they do not take stock in counselling or group therapy - their opinion is if they get a chance to get away from me they want to get away from me not be stuck in a room talking about me, they want to go to the pub, play pool, play poker, go swimming - anything that doesn't involve talking about me and what it is like living with me.

    WE NEED properly paid carers to support all carers professional, familial and friends.  For too long successive governments have expected friends and/or family to take care of sick, disabled or elderly relatives with little or no support either financial or emotional and if they are unable to do so pay minimum wage and class one of the most stressful and distressing jobs in the wold as unskilled --  SOMETHING NEEDS TO CHANGE or we will end up with our loved ones being warehoused in institutions again
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    There will always be unpaid carers but one thing I can say for myself is its not about the money its about giving quality of life and being there for someone that needs me I will go that extra mile for any one to make them happy and keep them safe and make sure they have a good life ?
  • sandrasandalwood
    sandrasandalwood Community member Posts: 7 Listener
    The needs of young carers and the fact that they cannot get benefits to look after their single parent is definitely an unmet need. 
    Young carers / children are falling through the cracks and many are turning to suicide. 
    When are the government and the carers charities going to support childern who without adult help end up being the only / main carers to a parent with a degenerative illness and paralysis? 
    It’s time we though of the children. As my experience has not matched the human rights or the same support for adult unpaid carers. ??
  • RichardLel
    RichardLel Community member Posts: 48 Courageous
    I found the whole thing a struggle a contradiction in terms being a unpaid carer but also registered disabled, so confusion is who caring for who.. If I did not find out about my autism, I would not found about my family autism and made the changes needed to protect the home from lack of understanding from services caused it.  Issues of stereotypes for being disabled not capable caring others from wider services, but left with the problems anyway for lack of support which pushes if my direction as the last resort. I problem get into trouble saying this as a former pro carer, that said  to my own care support, which also ended up a advice for family support as parent, than using advice for my self care. That unpaid carers operate well beyound what I did within a hospital environment, without the pay, without the training, without the staff support, that can’t go home end of a shift as their home is a place of work! That parents of autistic children as example easy judged on their ability as carers from like family services, when expectations unreasonable as standards needed go beyound what I learned in nursing and saying something and as parent with child with autism, without the resources or backup. It’s a credit to unpaid carers that dedication to caring for loved ones under very difficult circumstances as not much to do it for lack of support.
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    I know people won't like me saying this and I apologise  but I don't think children should be carers  children need to be children for as long as possible its to much pressure and they have to grow up to quick 

    @sandrasandalwood children don't get help because these days people don't tell social services  that their children are careing for them  it doesn't always have a good result 
  • craftyarts
    craftyarts Community member Posts: 19 Connected
    Absolutely children should be children without the responsibility of looking after someone else or even supplement care for someone. 
    There is a charity that recognises children who provide / supplement care for others . This charity organises days out for them ! I  am not saying this is good enough in any way but these children can be nominated for awards.  In some areas a youth club has been set up so as they can talk to others get away for a few hours and have someone to talk about their concerns .
    Carers can feel isolated and drained and in some areas a group has been set up so they can share their experience and gleen knowledge from others 
    When someone has a disability everyone is affected by it and to achieve the best outcome everyone in that family need to be supported and have a safety net of where to go to for advice.  The main thing is the famillies income is usually negatively affected in some way. Citizens Advice , Turn2 us can be helpful, social services and charities for specific needs . If someone is in hospital contact the socialworker explaining what the needs will be and if required get a OT assessment.  I would suggest this needs to be sorted out before one is  discharged .
    A jar openner or sock puller on as simple as that sounds can be the making of the situation and the individual needs less caring time because they are more independent and dont need as much care as they did .
    Carers good natures  are certainly abused and exploited but their intervention time could be reduced with proper aids and equipment! Plus the individual becomes more independent and you will find they will start to grow and gain their self worth .
    Alexa can do many tasks now which aleviates many carers duties.
    I do understand for some this is not always possible, but I believe it is worth trying.  Nothing ventured nothing gainec ! 
  • sandrasandalwood
    sandrasandalwood Community member Posts: 7 Listener
    I totally agree with every point. But wether we agree, the sad face is that even now, children are being left to be the carers of the disabled parent. 
    That’s what happened to me when my husband ran away after I became very physically disabled. Leaving 13 year old twins and a daughter turning 15, to not only care for me, but to care for the home, make dinners, washing laundries etc. The social work know this happens and they have no resources to support young carers. The personal care was only that. Personal. But all were and still are being left for children to look after their parent when the other parent abandons the family. My children were doing high school exams. A daughter who was fast tracked to study medicine, couldn’t cope and tried to commit suicide. The pressures on young carers is not being tackled as most people are adult carers. The needs of children must come first but in social services or education, nothing is being done to improve their lives. 
    That the reason I wrote this. Young carers must be prioritised, must be made publicly aware and must have support to be children without the strain of looking after a chronically ill disabled parent. Paralysed through an antibiotic and left to get on. With no career, no financial stability we lost our family home and as the local councils believe that they only need yo house disabled in 2 bed homes, they added insult into injury in splitting my family apart. My 18 year old twins had to rehome themselves and I was left with my 20 year old daughter. These things are happening day and daily. And no carers support is available to them. No support, no assistance and no care for children who are forced to be young carers. And there’s tens of thousands of these children in the UK who are not being supported by the broken system. 
    Young carers MUST be supported both in education and by all council departments including social work, housing etc. 
    It exists. It’s wrong and it’s the hidden shame of the carers community. 
  • sandrasandalwood
    sandrasandalwood Community member Posts: 7 Listener
    I should add, I’m paralysed from the shoulders down. So none of these aids are of any help to me. 
    A neurotoxic reaction from an antibiotic caused this. I am tube fed and have a specially adapted NHS power chair, hoist etc. There’s nothing I can do to make me more independent. If there was, I’d do it. 
    But when this happens and the marriage breaks down- 75% do and more males leave paralysed wives, then the OT and social work put in carers 4 times a day. I get 2 hours very basic care. 
    Nothing to help my children. No support in anyway. What happens after 7pm when the carers have put me to bed- and I have a incontinence accident. Do I lie for 15 hours awaiting their return the next day? Or do I emotionally break as my children clean me up? No independence promoting aides or adaptations. 
    The only option to keep the family together and not lose my children to the child care system, which is far worse option. 
    Disabled people is just aging. It’s young adults with children who no fault of their own who end up in this situation, then lose everything when councils don’t build family homes for disabled people with children. 
    Our children need to be children. Young disabled parents need more support to allow their children to be fully supported too. 
    But when it’s an accident caused by a antibiotic that does this to 1 in 10,000 people being administered it, then the government should pay. But no, I’m supposed to take pharmaceutical giant Johnson and Johnson to court!!! Not in the UK, as no one will take the case on. The damage has been done and my children have been damaged by the lack of support and help to YOUNG CARERS. ?
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hi @sandrasandalwood

    I'm sorry to hear about what you and your family have been through over the years, it sounds really difficult but you must be so proud of your children for how strong they've been.

    I have sent you an email from [email protected] to see if there's any way in which we can help you, so feel free to give it a read and get back to us.
    Online Community Coordinator

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  • sandrasandalwood
    sandrasandalwood Community member Posts: 7 Listener
    ?? thanks. 
    I’m now challenging the OMSES scheme cap limits on homes disabled people can get assistance to buy. It’s a great scheme on paper, but each local authority puts a limit on homes per apartment. 
    It just seems like I have to fight the system for everything. I’m no one special and I don’t want anything I’m not entitled to. But even to get the basic entitlement, why do disabled people and their carers have to fight for the crumbs of entitlement?
    my oldest daughter started a young carers charity. She set up a board with other young carers, and fundraiser from age 18-24years. She became chronically ill herself and asked social services if they could take over the young carers charity, which funded support and respite breaks for young carers in Lanarkshire. Instead, social work told her to give the funds raised to the local carers network who only supports adult carers. She did this, but after receiving the funds and charity, they didn’t run a child carers service. 
    She’s been to government meetings with th many care charity’s stating there’s no child carers. 
    But in our local authority, there was over a thousand, and all these child carers are slipping through the net. 
    Education in Scotland  now is the only support for child carers. And it all depends on the school. Our nations children are being used by the system to care for parent with MS, paralysed , cancer, addiction, mental health etc. With little or no support- all depending where they live. A postcode lottery. As a parent of three children both the system and their farther failed, I really would like no other child to try or commit suicide, because they can no longer cope at school or home. 
    And I’m Scotland, where all the onus are on education to assist child carers. But what happens to the children when term time holidays and out of school hours leaves them alone and unsupported? Surely, the government funding must be put into social support services for children who are young carers? 
    As you will read, I’m passionate that all child carers get recognised as child carers. That a National support network gets put into place. 
    Even now, with the virus and laws, child carers are not coping. The virus did not break the systems of health and community care, education and social services. 
    But the virus does d show that these systems were already broken and beyond repair. 
    Thanks for your interest in this hidden topic. Child carers are unsung heroes which affect them for life. 


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