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Carers Week 2020

This week is Carers Week and I wanted to talk about the people here in the UK who are carers and the lack of support available to them.

Carers Week

Carers UK say: “Across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill. That’s 1 in 8 adults who care, unpaid, for family and friends. Carers are holding families together, enabling loved ones to get the most out of life and making an enormous contribution to society. Many carers are stretched to the limit – experiencing poor mental or physical health themselves, finding it hard to make ends meet, struggling to juggle work and family life or having to give up work to care.”

Husband, wife and adult son

Carers Allowance

Some carers can claim Carer’s Allowance, but this is the lowest benefit of its kind at £67.25 per week (2020/21 rates). It comes with many caveats including that the carer cannot be in full time education, cannot earn more than £128 a week from work and the person they are caring for must be receiving Personal Independence Payments (PIP), Disability Living Allowance (DLA) or Attendance Allowance.

You cannot usually be paid Carer’s Allowance if you receive one or more of the following benefits:

  • State Pension
  • contributory Employment and Support Allowance
  • Incapacity Benefit
  • Maternity Allowance
  • Bereavement or widow’s benefits
  • Severe Disablement Allowance
  • contribution-based Jobseeker’s Allowance

So those who can actually claim Carers Allowance are essentially ‘working’ for around 50p an hour (if they care for the minimum of 35 hours). Now, of course the carers are not doing this for the money, they are caring for a loved one. But why should their care mean they are financially disadvantaged? Consider that Carers UK say that carers save the economy £132 billion per year, an average of £19,336 per carer.

No support

But many, many more people care for their loved ones with no support at all. My husband and kids have cared for me for the past 7 years. I have had 9 major surgeries, months in hospital and I live with a chronic illness. They have had to do housework, do my laundry, cook for me, help me wash, take me to appointments, take time off work and study to look after me. Yet because my husband juggles to run his own business around caring for me and earns more than £128 a week, and because my children are in full time education, they get no financial support at all.

Over on twitter, Courtney Hodgkiss said “My husband cares for me, a significant amount more than 7 hours a day, but earns more than £100 week in his actual full time job because we can’t live on this pitiful amount of £. Full time carers need banded payments similar to nursing.”

Activist and carer Dan White said this:

Young Carers

Young Minds say: “The BBC estimates that there are about 700,000 young carers in the UK. Being a young carer often means looking after a family member who is ill or helping them by looking after the other members of the family while they can’t. Young carers often do more chores than other children would. On top of providing emotional support to the person they are caring for they may also have to learn how to nurse them or look after their personal needs like bathing and dressing. 

It can be hard work being a young carer. Sometimes other children don’t understand your responsibilities and you have less free time than others. Many young cope well with caring, especially if you have support from other family members and it’s important to look after yourself. You have the right to be looked after too and there are lots of places and people you can go to to get help.

I wrote about Young Carers last year, including my own wonderful children, you can have a read here. These are issues we should be talking about all year round, not just in Carers Week.

Practical and emotional support

It isn’t just about financial support either, what about practical and emotional support? Again, for people who aren’t ‘official’ carers, they can often feel there is no support at all. But even those who are a ‘registered’ carer say they often feel isolated and struggle physically, practically and emotionally. Regardless of whether you claim Carers Allowance or not, there is some support available.

In Sheffield, they have the website doyoucare.co.uk, take a look. They say “Chances are you already know an unpaid carer because 1 in 10 people in Sheffield cares for a family member. Caring can be practical: washing, dressing, collecting medication, cleaning, cooking, sorting out the bills, doing the shopping. It’s also often emotional: helping a person deal with their illness or disability, soothing their pain, fear, confusion, anxiety, depression and paranoia.

Caring can be rewarding, but it is also hard, unpaid work. Carers are more likely to struggle financially and have worse physical and mental health, than people who aren’t carers. In Sheffield, our campaign ‘Do you care?’ is brought to you by the two charities that support carers in the city: Sheffield Carers Centre and Sheffield Young Carers, with generous support from Sheffield City Council. We can all help carers.”

If you aren’t in Sheffield, then search for carer support in your home town. Citizens Advice have information here about being a carer. If you are looking for information about financial support, Carers UK have Upfront, a simple tool for carers who are new to the maze of benefits and entitlements. Fill in your details, spend a couple of minutes answering questions and they’ll guide you to the information you need. They can also offer support on the phone or by email and have a lot of information on their website.

They say: “Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email ()

We provide information and guidance to unpaid carers. This covers a range of subjects including:

  • Benefits and financial support
  • Your rights as a carer in the workplace
  • Carers’ assessments and how to get support in your caring role
  • Services available to carers and the people you care for
  • How to complain effectively and challenge decisions

If you feel you need help in these areas, or want to ask a question that might be helpful to you with your caring, please get in touch. We’re not always able to provide the same level of specialist advice by telephone as we can by email, so if we’re unable to help you in this way over the phone, we will tell you about other ways to get this support including guiding you towards other services and organisations that can offer support.”

Corona

The Corona Virus is having a huge impact on disabled people, ill people and carers with vulnerable people being told to self isolate for months and sometimes vague and ever changing rules. The government has published some specific guidance for carers of friends or family during the coronavirus outbreak. Carers are being told “If you are caring for someone who is deemed to be extremely vulnerable, take extra precautionary measures by only providing essential care and ensure you follow the NHS hygiene advice for people at higher risk.”

The Guardian reported last week that “There were almost 10,000 unexplained extra deaths among people with dementia in England and Wales in April, according to official figures that have prompted alarm about the severe impact of social isolation on people with the condition.” That social contact that carers give is so vital, it isn’t just about washing or feeding but the day to day emotional support and care they give, that can be completely life saving.

The Guardian article continues: “A survey of 128 care homes by Alzheimer’s Society reveals that 79% report that lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia. Relatives of those with dementia in care homes have spoken of their loved ones feeling confused and abandoned, stopping eating and losing the ability to speak.” The Alzheimers Society are currently running an emergency appeal to fund companion calls to people with dementia.

Campaigns

I added my voice to the Carers Weeks campaign to #MakeCaringVisible, you can pledge your support too.

Whether you are a carer, the person who is cared for or you just want to support carers in the UK, there are ways you can help this Carers Week. There are lots of ways to volunteer, donate or support Carers UK here. There are also a lot of campaigns you can get behind, including breaks and respite for carers, fairer financial support, parking for carers at hospitals and most recently ensuring Carers are taken into account within the Corona Virus Act.

What else can you do?

If you know someone who is a carer, reach out to them, say hi, ask how they are. If you can offer support, this could just be a friendly face to listen. I know that my husband wouldn’t describe himself as a carer. Despite the fact that he is and has been for years. He says he is just looking after his wife because he loves me. And this is true but it doesn’t stop the reality that he is under added pressure because of it. I can’t tell you how much we appreciate it when someone gets in touch with him when I am very unwell. That thought and kindness of checking in with him to see if he is doing ok is everything.

Thanks for reading

Peace and love

Sam xx

Carers. Actual superheroes…

People sometimes tell me I must be very strong to deal with the illness, surgery and recovery that I’ve been through over the past ten years.  The truth is that the strongest person in my house is Timm, my husband.  You see, he has dealt with everything I have been through too, but he doesn’t get the support that I do.

Timm is my carer, he looks after me every day both physically, mentally and emotionally.  Part of me HATES this, I despise the fact that my husband has to look after me in this way, I want us to be equal partners and I feel bad that he has to care for me.  But the biggest part of me has just the hugest amount of gratitude and love for the man.

Carers are superheroes in my eyes and a grossly under appreciated resource in this country.  I can’t even imagine how I would have survived the past year without Timm in my life.  Not only did he take on all the responsibilities of the kids, housework and our business, he had to become a nurse, a therapist, an advocate and an all round hero.

 

sam cleasby timm cleasby so bad ass sheffield

 

 

Whilst I was recovering from surgery, Timm was brilliant.  As I lay in bed, resting and allowing my body time to heal, he did EVERYTHING.  But now four months down the line, I’m sad to say he is still being my carer and looking after me.  As I have blogged, things are not great at the minute with my jpouch, I am going to the toilet 15+ times a day, getting up through the night several times, I have massive fatigue and mentally I am not in a great place.  And this is where being a carer gets so much harder.  It is not about a brief period of nursing, when you are a carer of someone with a chronic illness, it is a life long relationship.  And that must suck.

I write this today whilst I am sat in bed.  This morning my husband got up with the kids and sorted them for school, he then got ready for work and came up, kissed me and told me to “rest, sleep and feel better”.  Every night I am waking 3-6 times and so I never get into really deep sleep so mornings are terrible.  I am so tired all the time!  I feel drained from pooing 15 times a day, I am fatigued and have this ache deep in my joints.  Yet the worst feeling is guilt.

I feel so guilty that I am not working, we run a photography company The Picture Foundry and currently Timm is doing everything.  I feel guilt and sadness that our ‘partnership’ is very one sided at the moment.  None of this is coming from him. He has never done anything to make me feel like he is fed up with this, he is never anything but supportive and wonderful.  It is all from me, I wrote recently about chronic illness and fatigue and there I talked about a feeling of waking with a desire to take over the world, that I feel I have a million ideas and want to do EVERYTHING, but then my body reminds me that it is broken and feels like a 90 year old!

 

being a carer is hard work

 

I just wanted today’s post to be a little recognition to the people in our lives who look after us.  Being a carer for someone you love is a role thrust upon you not usually one you would choose.  It’s a special thing to have the patience to care for another person, I know that Timm would brush this off, he would make a joke and say that he does what anyone would do.  This is one of his best qualities as a carer, he jokes about it, he takes the piss out of me, it isn’t all serious, he makes me laugh when the last thing I feel like doing is laughing and always makes me remember that my illness doesn’t define me.

If you are a carer then please go take a look at Carers UK, it is a great resource for anyone in a caring role and gives some pretty interesting statistics plus help and advice. There’s a statistic that says that 1 in 8 people in the UK are carers and that saves the state £119 billion.  Take a peek at the forum to speak to other carers.

There are also support services specifically for people with IBD and their friends and family, take a look at Crohns and Colitis UK.

carers in the uk saves the state billions

 

 

I just want to thank Timm once again for being so bloody awesome, he is just the best bloke in the world and makes every single day better for me.  I don’t know how he does it and keeps all the balls up in the air, he is juggling business, family, home and my health and does it all with an amazing sense of humour, a kindness that breaks my heart and constant love and support.

sam and timm cleasby sheffield

 

Love Sam xx