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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

Sheffield Scope Shop opening

This year, Scope opened a charity shop in Sheffield, their first one in the city. It was an honour to be asked to open the store and to get to go in early and have a scout around the clothes. I got to pick a few outfits and then modelled them to promote the shop.

You can find the shop on Division Street in Sheffield and I have to say I went back and bought a few of the items that I modelled for them. There are some great vintage finds and at a brilliant price as well as loads of books and household things. It’s worth a look if you are in Sheffield.

Sam Cleasby opening a charity shop in Sheffield

You can keep in touch with them by following them on Instagram or just popping in. The manager is friendly and welcoming as are the volunteers working in the shop.

Sam Cleasby opening a charity shop in Sheffield

If you are looking for a volunteering experience, get in touch with them at . They are currently at the time of writing this looking for sorters, shop and till assistants, take a look here.

Sam Cleasby opening a charity shop in Sheffield

It’s the first time I have been invited to cut a ribbon and I absolutely loved it! I also do talks around the UK and Europe about Inflammatory Bowel Disease, life with an ostomy, self esteem, body confidence, disability, parenting and more. If you are looking for someone for your event then take a look through my past events here or get in touch.

Peace and love

Sam xx

Crohns and Colitis UK South Yorkshire

I am really proud to be a volunteer for the South Yorkshire group of Crohns and Colitis UK.

We are a small team who all have either Crohns or ulcerative colitis and we raise awareness, raise money and offer support to local people with IBD in our area.

A few weeks ago we had a race night in Hillsborough to raise money and have a great time. We were over the moon to raise over £1000!!

Crohns and Colitis uk South Yorkshire

We were thrilled to get into the Sheffield Star too.

We put on coffee mornings, attend events and put on our own and everyone is welcome.

Our next event is this Saturday at the medical education centre at Northern General hospital in Sheffield from 1-4pm. I will be doing a talk about the emotional and mental health aspects of IBD and there will also be talks by my wonderful surgeon Mr Brown and an IBD nurse.

Everyone is welcome, please do share the event and come along if you can.

 

Sam xx

Can we get this amazing song to Christmas number one?

Have you heard of the Everly Pregnant Brothers? They are a ridiculously funny and brilliant band from Sheffield who play ukulele puntastic covers of modern classics and if you haven’t heard of them, I hope by Christmas day, you will have as they have released their hilarious cover of Sex on Fire by Kings of Leon, Chip Pan on Fire with South Yorkshire Fire and Rescue to raise money for Shelter and Age UK to protect the elderly and vulnerable in their homes.

I first came across Everly Pregnant Brothers at Tramlines festival where they played at a tiny, riverside pub and took over the whole area with thousands of people hanging off railings to see them play.  With classics such as Pork Pie (Parklike), No Oven No Pie (No Woman, No cry) and Sheffield Calling (you get the drift, right?) they are a Sheffield staple and quickly became a firm favourite in the So Bad Ass household.  We bought all their albums and attended lots of their gigs for silly, funny and wonderfully Sheffield lols.

sam cleasby so bad ass every pregnant brothers tramlines

And so when I saw they were releasing this charity single for Christmas, it put a smile on my face.  How fab, I thought, that’ll raise a few quid and more of my friends can fall in love with them.  They started selling well, then it got serious, they were on TV on The Last Leg where they got a standing ovation, in the media and filling my Facebook and twitter feed, bloody hell, could they actually make it? A group of middle aged men playing ukuleles, not taking themselves or life too seriously, could they actually become the light at the end of the shitty tunnel that 2016 has been?

I became friends with Big Shaun (their singer) after a while, we would bump into each other at Tramlines and as anyone in Sheffield knows, EVERYONE KNOWS EVERYONE, so it was obvious that we would have mutual buddies.  I saw him put out a call on Facebook for musicians to play at a one off charity night with him to raise money for the victims of sexual grooming and exploitation in South Yorkshire and shyly got in touch, offering the services of my then 14 year old bass playing son.  He didn’t have much experience, not much more than a few gigs at school and so I fully expected to be politely turned down.

But I don’t think Big Shaun does turning people down, he has a big heart and a love of music and community and so he took my lad under his wing and welcomed him into the gang.  Weeks of rehearsals followed, each one with me collecting Charlie from a room full of musicians apologising for any swear words they may have taught my lad that week, and then came the gig where they kicked arse and raised lots of money for a worthy cause.  They also inspired my boy to have a love of old music, to realise that he could do this and to give his musical confidence a huge boost.  And for that, I will always be truly grateful.

everly pregnant brothers photo by timm Cleasby photography

Photo by Timm Cleasby Photography

And so here comes the science bit, can you afford to buy this single for 99p and not only be raising money for great charities but getting this wonderful band to Christmas number 1?

If you are still in doubt, here are a few reasons why you should…

  1. Ukuleles are flipping cool.
  2. Raising money for Shelter and Age UK.  Do it for the older people and those struggling with housing problems.
  3. 2016 has seen us lose so many musical geniuses, David Bowie would want you to buy this.
  4. You could piss off Simon Cowell and keep another x factor conveyer belt, cookie cutter singer off the number one spot.
  5. The video was shot with zero budget, these guys have no big marketing team and millions of pounds behind them, it’s just some Sheffielders doing what they love and playing tiiiiinnnnny guitars.
  6. It will put a smile on your face, guaranteed.
  7. All the cool kids are doing it.
  8. Sheffield is basically the centre of the universe and it is only right that we host the xmas number one.
  9. Wooooaaahhhhhhhhhhhh my chip pan’s on fire.  Best. Lyric. Ever
  10. Because I am asking you reallllly nicely.

Come on lovely readers, stick your hand in your virtual pocket and fork out 99p to make my year!

 

Sam xxx

Crohns and Colitis UK Community Champion! That’s me!

Oh blimey! I am so overwhelmed and proud to let you know that I am now one of Crohns and Colitis UK’s Community Champions.

“Crohn’s and Colitis UK’s close community is our biggest strength and we would not be able to continue our fight against Inflammatory Bowel Disease (IBD) without the support of those who are making a huge difference to support the charity and the wider IBD community.

We are honoured to recognise several dedicated supporters as Community Champions, because of their dedication, passion and exceptional efforts. Community Champions do incredible work across the UK, they are campaigning to raise awareness in the media, striving to resolve stigma associated with bowel conditions, raising money that funds research, support lines and much more as well as volunteering to support their local community.”

sam cleasby crowns and colitis uk community champion

 

I became a member of Crohns and Colitis UK shortly after I was diagnosed with Ulcerative Colitis.  I had never even heard of the illness before the doctors told me I had it.  At first I was just relieved that I didn’t have bowel cancer, but then as I read up on it, I got pretty scared.  I searched the internet for answers and found some scary stories that made me feel worse than before, and then I found CCUK.

It was such a relief to find a website with all the information and support that I needed in one place, I used the forums and read up as much as I could.  Then when I had my surgery to remove my colon in 2013, I rediscovered the site and it was even better, there was a lot of information but it was easy to read and access.

Crohns and Colitis UK have done so much for me and I knew that I wanted to give something back, I am a member and would recommend it to anyone who has IBD or is a carer or family member, you can join from £15 a year, get a magazine, can’t wait card and a ton of support and your money goes to research, support and information, if you join in October, you get a free RADAR key).

Since then I have done fund raisers, joined my local branch and raised awareness of this amazing charity and I will always continue to do so.  To be made one of their community champions is a very proud day for me.

sam cleasby crohns and colitis uk community champion

And I am in such amazing company too! Ellie Pugh is just 11 years old and has raised so much money for CCUK after being diagnosed herself, what an inspiration! My lovely friend Charlotte Guinea, who I met through our shared love of stopping poo being a taboo is also one of the Community Champions and of course, the wonderful Get Your Belly Out team.  Take a look at all the champions here.

I don’t do what I do for recognition, I do it because this is my life, I know how it feels to have IBD and face the uncertainties, fear and struggles of life with a lifelong, chronic illness.  I share my story because in my darkest days, I wish I could have read about someone else’s journey to give me hope that there is life after an IBD diagnosis.  But I am extremely proud, humbled and honoured to be part of something so special.

Thank you Crohns and Colitis UK, thank you

 

Sam xxx

The #GetYourBellyOut birthday ball 

I was super excited to be invited by Crohns and Colitis UK to attend the #GetYourBellyOut 2nd birthday ball with them.  As it was Timm’s birthday, he came along too!

#GetYourBellyOut is a great group who raise money for CCUK and awareness of life with Inflammatory Bowel Disease.  To join in the campaign, all you have to do is upload a picture of your belly to your chosen social media accounts using the hashtag #GetYourBellyOut! You DO NOT have to have IBD to join in the campaign, just a willingness to help raise awareness!

You can also make a donation by sending the text IBDA99 and your donation amount E.g. ‘IBDA99 £3’ to 70070 (UK mobiles only) or you can donate to the JustGiving page online here. ALL donations go to Crohn’s and Colitis UK.

The event was held at the National Motorcycle museum in Solihull and it was an absolute blast! It was amazing to be in a room filled with so many inspirational and wonderful people, stories were shared and the drinks flowed as people talked about their own IBD journeys and the difference that the campaign has made to their life.

IBD is known as an embarrassing illness and it can be hard for people to speak out about their illnesses and how it affects their lives.  So to be at this event where everyone is speaking openly (I was going to say ‘poo was on everyone’s lips’ but that sounds very, very wrong!) was just brilliant.

#GetYourBellyOut is doing amazing work and I was so chuffed to be invited, here are some of the photos from the night.  I’d highly recommend you head over and check out their work.  Someone asked me if I felt in competition with the group and with other IBD bloggers, and I can wholeheartedly say NO!  I think we are all on the same team and we all do what we do to try and make the lives of other people better.  I happily promote and share the work of other bloggers because I want to get everyone talking about their health, it is all about raising awareness and the more voices out there, the better.

When I was diagnosed with Ulcerative Colitis in 2003, there was so little support, the internet and social media have brought together so many people who are willing to speak out and to offer help to others and that is just so special.  I started this blog in early 2013 when I couldn’t find much info and support in the UK, nowadays there are so many more blogs, websites and support groups and this can only be a good thing.

Let’s celebrate all those who work hard in tough circumstances to shout out, to stop poo being taboo, to raise awareness, raise money and work to find a cure.  The Get Your Belly Out birthday ball was certainly a celebration of all those things.


Thank you guys for all your fantastic work!

I suppose it is only right that I get my belly out for this event, so here you go!

 

Sam xx

Scope’s #EndTheAwkward Romance Classics

It’s almost Valentine’s Day and the fabulous Scope are all about the romance.  As part of their End The Awkward campaign, they’ve kicked off the most romantic time of the year by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

They created Scope Romance Classics in response to their new polling that shows just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder. This is because too often people don’t see disabled people in romantic situations. So they made them the romantic leads for Valentine’s Day.

I love it! I love the whole End The Awkward campaign that aims to normalise disability by showing people with disabilities in everyday situations in the media.  On Valentine’s Day, it is a great time to think about everyone in society, not just able bodied.  How often do you see people with disability in romantic situations in the media?
mills and boon scope

 

 

I was really proud to be part of Scope’s A-Z of Sex and Disability last year which aimed to share the experiences of people, educate and support those struggling with their own sexuality due to illness, accident or disability.

mills and boon scope

 

For more information on Scope and End The Awkward, head over to their website now.

 

The Plug and CCUK 

Last year, The Plug nightclub in Sheffield got in touch with me, they’d seen my blog and the work I do and wanted to help.

They choose charities and donate the income from their guest list donations. So basically, if you are put on the guest list to see a band at The Plug, you are asked on the door for a small donation. Seems fair if you’re blagging your way in for nothing!

Anyway, they asked me who I’d like to donate to and I, of course, chose Crohns and Colitis UK.  I volunteer for the South Yorkshire branch of CCUK and so the money will go directly to the people of South Yorkshire which is just awesome!

plug sheffield charity crohns and colitis UK

I would like to thank The Plug for an astounding £732.62! This money will make a big difference and I am super proud of being part of this.

If you live in South Yorkshire and either have Crohns or Ulcerative Colitis, or if you have a close family member or friend who does and you want support and information, then please do get in touch, attend the coffee mornings and get involved!

CCUK are a charity so close to my heart, it is well worth joining the national charity for support and info and then getting involved in the group in your area.

 

Sam x

Crohns and Colitis UK Dinner Dance

Back in September, I was invited to a dinner dance arranged by Stephanie Donnelly, a woman who set up a support group for people who have or are about to have stoma surgery.  It was in aid of Crohns and Colitis UK and Breakaway and I was asked to be part of their fashion show at the Midland Hotel in Bradford.

crohns and colitis event charity blogger sam cleasby

It was a great event and they raised a lot of money for two great causes, it was an honour to be part of the day.  Sometimes, being an IBD blogger can be lonely, you sit alone writing for a huge audience but don’t actually get to spend time with others and so attending events like this is a great joy.

crohns and colitis event charity blogger sam cleasby

I have never done a catwalk (there doesnt seem to be much call for a size 16 woman covered in scars to model!!) before but it was tons of fun and fantastic to be part of a runway filled with inspiring women who have or have had an ostomy.  There was a Photo Booth and a swing band called the 309’s, all in all it was a fantastic night!

Thanks to Timm from The Picture Foundry  for being my wonderful date and for photographing me in these shots.

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

crohns and colitis event charity blogger sam cleasby

Sam x