This boy

This boy

We never had wedding vows of in sickness and in health.  Instead our Elvis minister asked us if we swore never to leave each others blue suede shoes out in the rain.

viva las vegas wedding

But he’s aways there by my side.

He puts my tablets in shot glasses with little stickers with times written on them.

He kisses me and holds me close when I cry through pain, frustration or sadness.

He goes to all my hospital appointments with me because he knows I forget what they’ve said as soon as I walk out.

He doesn’t mind when I’m too tired to do anything but lay in bed. And will lay right there with me.

sam and timm cleasby

He runs me a bath, sits on the floor and washes me when it’s all just too much.

He makes me laugh when I am sad.

He comes to my events to support me and never complains about the hours waiting for me.

He works so damn hard to make sure our family has all we need.

Through every surgery he is there.

Through every recovery, he does it all.

Through the toughest of times, he sticks fast by my side.

sam and timm cleasby

Through the darkest of times, he sits under a duvet cave with me whispering and kissing.

He washes the sheets and my clothes when my bag leaks.

He helps me do my hair when my arms don’t have the strength.

He loves me even when I don’t feel worthy of love.

He wants me to be the best version of me that I can.

Wedding renewal

He runs around Ikea with me playing and making fake photo shoots.

He brings McDonald’s and makes a picnic on our bed with all the kids when I’m too sick and tired to cook.

He tells me I’m beautiful even when my hair is falling out and I’m too tired to shower and I’m wearing pyjamas.

He cries with me and tells me that no, it’s not fucking fair.

Love and relationships

He listens to my crazy plans and never tells m they’re crazy, he tells me to get planning.

At night when I can’t sleep, he gives me his hand so I can lay with my fingers on the pulse in his wrist because though it’s batty, he knows it calms me down.

When I’m too tired to go out on Valentines Day, he orders room service and beers and we have them in bed.

He once stole a wheelchair and kidnapped my from hospital so I could sit with the sun on my face.

Sam Cleasby Timm Cleasby

This year, we will celebrate being together for 20 years, and though I never thought it possible, I love him more every day.

This boy. He is my everything.

And he’s never, ever left my blue suede shoes out in the rain.

 

Sam xx

She conquered her demons and wore her scars like wings

I saw this quote today and it felt very apt. It’s been a rough old road at times but I finally feel like I’m conquering those demons and feeling pride in my scarred body.

Conquered demons scars like wings

 

Chronic illness has taken it’s toll on me over the years, there are times when I just feel so defeated. I have this happy and positive online persona and in real life I always try and see the best in any situation but sometimes my heart breaks at the life that has been thrust upon me.

I was once asked at an event, if I could wave a wand and make my illness all go away, would I?

I felt a huge pressure to say no, that I would keep the life I have, but in reality, I would do it in a heartbeat.

sam cleasby so bad ass IBD blogger and writer

I know that my illness and what I’ve gone through has made me the person I am, it’s shown me I’m stronger than I ever imagined, it’s brought a bond with friends and family that can’t be surpassed and it’s also shown me other people’s true colours.

Its led me to having a blog that’s been read almost 3 million times (!) and has given me some amazing opportunities to be on TV, the radio anc in newspapers and magazines all over the world. I’ve spoken at events the length and breadth of the UK and travelled to Spain and soon Germany.

sam cleasby public speaker

Its brought new people into my life who I’d never have met otherwise. I’ve been to parliament. It led me to a job with Scope that I adore. I’ve met Philip Schofield for Christ’s sake!!!

But it has stolen so much from me.

It robbed me of precious hours, days and weeks with my babies. It’s taken it’s toll on my relationship. It forced me into missing days out, nights with the girls, holidays, events. It took my career.

It made me weak and fearful and exhausted. It stole a part of me, both physically and emotionally. It hardened me to the fuckwittery of others (wait, that’s actually a good thing!) but it also toughened my armour and made me push people away.

sam cleasby ibd and children

 

It caused my babies to be stressed and scared, making them fearful yet far too familiar with hospitals. It made them into young carers and forced them to face worries way beyond their tender years.

But we are here and we still stand strong.

Those feelings of guilt, fear, depression, anxiety, anger and a deep sadness that took a tight grip on my soul, all those feelings still linger yet they don’t have a hold over me.

My body that changed so much bears the scars of multiple surgeries but you know, I kind of love it. My scars show my journey, they are the proof that I survived. My ostomy bag is not worn with shame but pride and love and hope.

My demons will be waiting in the shadows for the rest of my life, but I’m finally feeling strong enough to face them, to fight them and to win.

Much love

 

Sam xx

It’s #TimeToTalk

Today is #TimeeToTalk day, a day of awareness of mental health challenges.

It’s a day that brings the nation together to get talking and break the silence around mental health problems.

“Too often, people who experience a mental health problem are also expected to take the lead on talking about mental health in the wider sense. Time to Talk Day encourages everyone to talk about mental health.

Mental health problems affect one in four of us yet people are still afraid to talk about it. For people with mental health problems not being able to talk about it can be one of the worst parts of the illness.

So by getting people talking about mental health we can break down stereotypes, improve relationships, aid recovery and take the stigma out of something that affects us all.”

family photo shoot with teenagers in Sheffield urban kelham island

Ive been quite open and honest about my struggles with mental health, though at times it was really hard to find the words.

After years of chronic illness and surgeries, my mental health took a real battering. I knew it and I tried seeking help through some talking therapy, this did help me sort out a lot of things from my childhood and past and I thought I was getting better.

Then in August last year, I fell into a pit. It snuck up on me until I realised that I was not well.  I am in two minds whether to admit this but I felt so low that I considered ways to kill myself.

I felt worthless. Worse than worthless, I felt like a burden to everyone around me, I felt that my very being made life worse for all the people I love. I felt like ending it all was the wisest decision.

What is scary now is that at that time, this felt like a totally rational and sensible decision. I remember googling ‘can you be suicidal and not depressed?’ as I really couldn’t see that these weren’t normal feelings.

It actually scares me to think back on this time, I could see no light, I felt stuck in this quicksand that pulled me down and held me fast but still allowed my head to be up in the real world so I could see everyone around me feeling happy and living wonderful lives.

I thought about running away from home a lot, about just packing a bag and disappearing, I fantasised about just going and leaving everything behind.  And then I felt extreme guilt about thinking about leaving my beautiful family.

I was in a cycle of bad thoughts and guilt.

It came to a head one day when it all came tumbling out, I cried and screamed and shouted at Timm. I lost it, pushing him away and telling him the horrible things that were going through my head.

I had 100% convinced myself that he was having an affair. I couldn’t imagine why he would want to be with me and I was so paranoid and lost that it became the truth.

I feel so sad now thinking back on this, I barely recognise myself in my own words.

The one thing that kept me going was my kids, my amazing children who I knew I would hurt more than I was hurting myself if I wasn’t here.

I read a quote once that said:

Suicide doesn’t take away the pain, it just passes it on to someone else.

And that quote kept me going.

I eventually went to the doctors and I was faced with the most caring and compassionate GP who put all my fears to one side. He took his time and talked through everything, he listened and told me it was all ok. That the feelings I was having were frightening but that lots of people have them.

He told me that my thoughts of running away or ending it were my brain going through options but the fact that I’d made the decision to be there in his office showed that I had chosen the right option.

I started on antidepressants last year and the difference is amazing. This imbalance in my head was addressed and slowly, those feeling ebbed away.

There was no switch, no instant recovery. But one day I realised that I hadn’t had bad thoughts for a few days. My GP said it’s like the sun rising in the morning, if you keep watch it takes so long, but if you turn away to make a brew, you come back and realise that the sun is here.

Im still taking my tablets, they have been life changing but the other thing that has helped so much is opening up and talking to the people I love.

Its hard to admit you’re struggling, but my husband and my close friends listened, loved and didn’t judge and I’m forever grateful.

So there we go, today was my #timetotalk I hope you can find someone to talk to if you are having a tough time right now.

Thanks for taking the time to read

sam xx

 

Why I’m a proud flasher

Don’t worry, I don’t have a mac and follow people around at night flashing my boobies. But I am a very proud flasher of my osteomy bag and here’s why…

I have had many comments about the images I share of my ileostomy bag, most of them are positive but I get the occasional one that says ‘why are you doing this? We don’t want to see it! Is nothing private any more? Won’t somebody think of the children?!!!’

OK, I may have made the last one up! But the point is that people do seem offended by the fact that I happily flash my bag, and these comments always seem to come from a person in the position of priviledge who have never had to face the scary event of surgery to remove your bowel and being fitted with a colostomy or ileostomy bag.

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

So why do I do it?

I remember sitting in a hospital bed, having just been told that I had to have surgery and they were going to remove my entire large intestine and I would have a stoma, they were going to give me an ileostomy bag and I was in tears.  I was terrified, I couldn’t imagine how my life would be afterwards and though I was in part relieved to see an end to the severe and excrutiating pain, diarrhoea, accidents and misery of ulcerative colitis, I was also devastated.

I thought my life would be over, how would I ever feel beautiful or sexy again? What would my husband think of my new body? Would I ever wear a bikini again? Would my new body inspire disgust from others? Would I be able to love myself?  I sat in bed weeping and I felt so lonely.

I googled ostomy bags and it came up with frightening, medical images of sick, old people in bed wearing huge bags on their stomachs looking sad and frail.  And I felt numb.  Was this the end of life as I knew it?  This was in 2013 and there were no UK bloggers talking about this, no one sharing their images of a happy life, no positive, joyful photos, just misery and illness.

stoma ileostomy femininity black and white photography creative shoot #stomaselfie sam cleasby

And that is why I started this blog. And that is why I am proud to flash my bag.

You see, though life can still be tough now, my ostomy bag changed my life for the better in so many ways, it gave me back a sense of control over my body, it made me feel well again, it stopped the pain and the isolation that 9 years of ulcerative colitis had caused.  And once I had the surgery, I realised that rather than fear and sadness, when I looked at my bag and my body I felt pride! I felt strong and powerful, I felt like I had dealt with a huge surgery and my body was still standing.

I realised that I never wanted another person to sit alone, frightened and crying in a hospital bed, wondering what their life would hold for them with a stoma.  I wanted to be the image that came up when they googled that showed them happiness, a fresh start, a normal life, damn it an EXTRAORDINARY life!

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

I wanted to be a small ray of light in an otherwise frightening time that could show someone that life with an ostomy bag is a positive and wonderful thing.  That they could be what they wanted to be with their bag, that it wasn’t something to be feared or disgusted by, but to be proud of.

I wanted to show the world that my ostomy bag saved my life and that I am proud of it and myself.

I wanted to show that I can feel beautiful, sexy, strong, powerful and like ME.

I will never stop flashing my bag because every time I do, I get messages from people thanking me, saying that it helps to see others with a bag, that it inspires them to be proud of their bodies, that even if they don’t want to show their own bag, that they share my images to explain to their friends and family what they have.

ileostomy bag and fashion swimwear

Should everyone flash their bag?

No, of course not! It is a totally private and personal decision, I am happy to flash my bag but that doesn’t mean that everyone should.  I hope that showing my bag off will help those people who want to wear a bikini on a beach to do it with pride, to show them not to be scared of being themselves.  But some people are very private and don’t want to have their ostomy bag on show and their privacy is as important as my desire to flash mine.

sam cleasby chicken keeping allotments kiveton sheffield

The stigma around talking about poo is part of day to day life, generally if we talk about toilet habits, it is done by making fun about it.  We find it hard to have an honest and open conversation about our bowels and that needs to change.  This fear of talking bums stops people from accessing medical help when they have bowel issues, it stops them from asking for help and that can have a hugely negative effect on our health.

The aim of my blog has always been to help others, to stop poo being taboo and to raise awareness of IBD, Crohns, Colitis, Ostomy bags and invisible impairments as a whole.  If I have to continue flashing this scarred body of mine and showing off my ostomy bag to keep the conversation going then I will do this till the day I die.

Sam Cleasby blogger ostomy ileostomy colostomy stoma

I am a flasher and proud!

 

Love Sam xx

On BBC Breakfast talking about Blue Badges

So there has been an announcement that Blue Badge rules are going to be looked at to make it easier for people with an invisible disability to get them.

I think this is great news, and Scope have said it is “A victory for common sense.”

sam cleasby at bbc breakfast blue badges invisible disability

I was invited onto the BBC Breakfast couch on Sunday 21st January to talk about my experiences of the blue badge and why I think it is a good idea.  It was an honour to go on BBC Breakfast again, I was there a couple of years ago talking about accessible toilets and so it was great to be back!

make up room bbc breakfast backstage at bbc breakfast sam cleasby blogger bbc media city

Timm came with me and filmed some of the day and put together a great video, apologies for the quality of the interview itself as we had to use one recorded by a family member off her TV!

Take a look here

 

If you want to have your say then please take part in the Blue Badge consultation, you need to do this before the 18th March.

For more support on this matter, you can head over to the Scope Community and chat with other members about how this will affect you.

You can chat with me about this on my facebook page or on twitter.

 

Sam xx

HUGE news!

I have been desperate to share this news for a few months but had to wait for everything to be confirmed, but I have some HUGE news!

In February 2018 I will be traveling to Munich, Germany and co-hosting an amazing event to raise awareness and money for Crohns and Colitis UK and Lupus Foundation with none other than Hollywood actor Ian Harding from Pretty Little Liars!!

You can find more information and buy tickets here.

ian harding lupus sam cleasby crohns and colitis uk

Just in case you can’t read German, here is a translation from the website:

“Autoimmune diseases Lupus and Crohn’s disease Crohn’s are a treacherous affair: often doesn’t show the suffering people go through, and yet a diagnosis has serious consequences for life.

To raise public awareness of the incurable disease, actor Ian Harding – coming known from the hit series of Pretty Little Liars and multiple winner of the teen choice awards – and the renowned British Blogger Sam Cleasby host an exclusive benefit concert in Munich.

Together with Cleasby, Harding leads through the program of the evening. Afterwards, you can meet Harding and Cleasby personally, when they will be signing event-designed T-Shirts, posters and flyers to  all concertgoers.

The proceeds of the event go to the organisations Lupus Foundation of America and Crohn’s and Colitis UK, whose Ambassadors are Harding and Cleasby.

The Bands Splashing Hill, Liann and a third act which is yet to be announced provide the musical accompaniment. Supports the event is through the European Crohn’s and Colitis Foundation ECCS, by the Director of the Crohn’s and Colitis Centre in Munich, Prof. Dr. med. Thomas Ochsenkühn. This serves the medical backgrounds of the events, which will also be addressed in the context of a discussion panel with Cleasby and Harding.

Regular updates to the event can be found on the Facebook page of splashing Hill.”

ian harding lupus sam cleasby crohns and colitis uk

I am over the moon and so proud to be part of this awesome event and can’t wait to team up with Ian and give a great show! It would be amazing to see some of my european readers over there, it’s going to be a blast!

I have done talks around the world, but this will be my first time speaking in Germany and so I am really excited to get to hang out and get to know some badasses from around Europe.  I am always so proud to be asked to speak and this will be my first time hosting an event, so I just hope I do you all proud.

I hope to see you there!

Sam

The best moment in your life

Someone recently asked me what was the best moment in my life, and I thought about it and realised how blessed I am to have so many to choose from.

Of course, the birth of my three kids were amazing, I think especially my first son as it was that life defining moment when I became a mother.  The kids changed our lives forever, they are just the best three people, they are smart, funny, loving, caring, sensitive and have beautiful souls, we couldn’t be prouder of them all and there are thousands of memories of amazing moments through their lives that have brought me so much joy.

My wedding days, yes multiple! We married in Las Vegas at the Viva Las Vegas wedding chapel by Elvis which was so much fun. And then we renewed our vows after ten years in a ceremony at home in our garden. Both of these were so special.

At our first wedding, we booked this amazing suite at the MGM grand, it had a hot tub and the biggest bed I’ve ever seen, it was super romantic. We had two kids when we married, Charlie was 3 and Ellie was 15 months old, the day of the wedding Ellie was sick, she’d cried all day and just wanted to be held and it was so stressful! My mum was supposed to be having them overnight so we could have a wedding night alone but she called to say she couldn’t cope with Ellie being poorly and so we picked up both kids. Our wedding night was spent with the kids playing in the hot tub and then all four of us ordered room service, got in the huge bed and watched Peter Pan. I suppose some might think it ruined things, but honestly, that moment of snuggling together and for the first time all having the same surname was perfect.

viva las vegas wedding

Our wedding renewal was one of the best days of my life, it was just perfect and I wish I could relive it! It was heaven, but there was a moment when all the guests had gone home (or passed out in the house!), it was quiet, 3am and after a whirlwind of a day, it was finally just me and Timm, I took off my shoes and got muddy stockings, Timm got a blanket and two glasses of champagne and we laid in a hammock together under the stars. That moment was pretty wonderful.

moody wedding photo bride with pick hair sequin dress

But there is one moment that is just my favourite. It’s the moment where if I had to live forever in it, I think I’d be happy.

Timm and I went to Vegas for a friends wedding a few years ago, we flew into LA and drove to Vegas. We stopped a night in a place called Pioneertown, Timm had been there before when he was touring and was desperate for me to see it. We got there late at night and so there wasn’t much to see, there’s one tiny motel and we crashed in bed exhausted.

pioneer town motel

We woke super early, it was still dark but jet lag kicked in and we were wide awake. Timm grabbed his jeans and I pulled on my boots and a hoodie with my nightie and we went outside as the sun started to rise. As we left our room I got my first glimpse of this amazing view, we were in the desert and I looked out on a street that could have been straight out of an old school western movie.

We went to the back of the motel and all we could see was sand, cacti and the biggest sky I’ve ever seen. There was so much sky, and as the sun slowly rose, it was every shade of pink and orange, no artist has ever painted anything as beautiful as that sky. We sat on a rock, hand in hand in silence, just watching the most perfect sunrise over a vista of empty space. No cars, no buildings, no people, just silence, nature and beauty.

pioneer town pappy and harriets

I looked back and found I had taken a picture of this morning, it’s not the best! We both look ever so tired and a bit rough and it doesn’t do the view justice at all!! But this is it, this is my best moment.

If there was one place I could go back to, Pioneertown would be it.  Ive had such a tough few years, five surgeries and one more to go, all the treatments and recovery, the anxiety, the depression… There have been times where I just didn’t know whether I would make it, but in the darkest of times thinking about the joy and love at the Pioneertown Motel kind of kept me going.  We plan to go back, I am not sure when, it is hard to plan too much when you are in and out of hospital but one day, Timm and I will be back under that sky.

sam and timm cleasby pioneer town us

I did some meditation recently and it suggested you imagined a place of peace, beauty and happiness and as I closed my eyes, my mind went straight to that moment, that place, that perfect moment.

 

What is your best moment? Let me know.

 

Sam xx

PIP – claiming Personal Independence Payments

PIP (Personal Independence Payments) is a non means tested benefit for working age people aged 16-64 who need help with some of the extra costs caused by long term ill-health or disability.

It is a complicated process that is distressing to lots of people and can be really confusing, I have tried to pull together lots of information here from start to finish, this means it is probably the longest post I have ever done, but I really hope it will be helpful to you.

What is Personal Independence Payment (PIP)?

PIP is a benefit for adults who have difficulty with daily living or with getting around because of a disability or long term health condition. You must be aged 16 to 64 to start a claim. It is not means tested and can be paid to people who are in work or out of work.

You could get between £22 and £141.10 a week by claiming Personal Independence Payment (PIP).  The amount you get depends on how your condition affects you, not the condition itself. You’ll be assessed by a health professional to work out the level of help you can get.

PIP has two parts (components):

1. Daily living component 2. Mobilitycomponent.

You may qualify for either or both parts, depending on how your disability or health condition affects you. Each component has two rates:

  1. Standard rate 2. Enhanced rate.

PIP claims are assessed using a point scoring system. You may be able to score points if you have difficulty with specified activities such as managing toilet needs or incontinence, washing and bathing, or moving around. Entitlement depends on the impact of your health condition, not the condition itself.

PIP is there for the extra costs associated with having a long term illness, Scope research shows that disabled people are, on average, £550 a month worse off than a non disabled person and this money is there to support you with this.  You can claim PIP regardless of if you work or not, lots of people seem to think that it is for those unable to work, and it is but it is also for those in work.

A good place to start is to do a PIP self test – this shows you the markers that they are looking for and gives you an idea of if you fit into them and what you could potentially score.  If you don’t score highly enough but are struggling financially then you can also do an online benefits check to see if you could be entitled to anything else.

You must have a ‘limited ability’ or ‘severely limited ability’ to carry out daily living activities and/or mobility activities. This is assessed using a points-based system and looks at how your disability or health condition(s) affect your ability to cope with daily life and mobility. It’s not enough to be diagnosed with a health condition – you must show that your health condition affects your life in particular ways to qualify for PIP.

You must satisfy the disability conditions for at least three months before you can start getting PIP and you must be likely to continue to satisfy the disability conditions for at least nine months after you claim.  For people with IBD, this is really difficult as you have times of remission and flare up and so proving that you will have the symptoms for the following 9 months is very tough.

If you have an ostomy bag or other complications around your IBD that are more steady and ongoing then this is much easier.

PIP and IBD ostomies ileostomy

The application process

The phone call

To start the claim process you have to phone the DWP on 0800 917 2222, before you call, you need to have to hand your National Insurance number, home address and phone number details, your bank account details plus the names, addresses and phone numbers of any medical professional who can support your claim.  This may be your GP, your consultant, your IBD nurse, your stoma nurse or any other specialists you see.

You also need the names and numbers of anyone who will be helping you fill out your forms, this may be your partner, a friend or your IBD/stoma nurse.

The call takes about 20 minutes and is handled by a call centre operative, they don’t ask you any medical questions but go through the information on their screens and so it does take a while.

If you struggle with communicating on the phone, perhaps due to mental health issues or any accessibility issues, another person can make the call for you, but it would be wise that you prepare all your details in advance and be with them as they make the call.

They ask if they can contact your medical contacts and get your medical history, you don’t have to agree to this, but it is likely this will hinder your case if they can’t get to see your medical needs from a professional.

The forms – PIP2 – How your disability affects you

So next, you should be sent the PIP forms, you should get these within 2-3 weeks, if you hear nothing after this time, you can call to check on the progress and ask for support.  The number for PIP enquiries is 0345 850 3322.

Filling in the forms can be an overwhelming task, I would strongly advise that you don’t try to do it all in one go as it can be very hard going.  Also if you have anyone who can support you in filling them in, then do ask for help.  You could ask a friend or family member, or you could seek professional support from the Citizens Advice Bureau (CAB). Either way, take your time.

Crohns and Colitis UK have produced an amazing document to help you fill in the PIP forms, you can download it here. They say:

“The purpose of the guide is to help people with Inflammatory Bowel Disease (Ulcerative Colitis or Crohn’s Disease) to apply for Personal Independence Payment (PIP). The guide explains who can qualify for PIP and how the application process works, as well as giving information about what you can do to increase your chance of a successful claim.”

The CAB have produced an amazing support document to filling in PIP forms, it goes through each question step by step, explaining in full detail how to answer and what information they need.  For example on question one, it asks you to give details of medical professionals that you see.  It seems simple and you may list your doctors, but the CAB advises this:

You need to give the DWP details of any health professional you’ve seen about your condition.

“Include:

  • doctors, GPs, consultants and nurses
  • counsellors, psychotherapists and occupational therapists
  • people like care workers, support workers, social workers and physiotherapists
  • their contact details – in case the DWP need to know more about your condition
  • the date you last saw them

If you don’t know the exact date you last saw them it’s ok to just give the year.

If you’ve not seen a health professional in the last 3 months it’s a good idea to try and get an appointment with them. This way you can tell them you’re claiming PIP and explain the day-to-day difficulties you have so that they’re up to date if the DWP contact them.”

Question two is about medication, the CAB advises:

“List all the tablets, medications, treatments and therapies you use and any that you’re about to start. This includes anything you pay for yourself (for example, painkillers) as well as anything you’ve been prescribed.

If you’ve got a printed prescription list you can attach this to your claim form – write your name and National Insurance number on it.  You don’t have to record the frequency, dosage and reason you take it.

If you’re not sure whether a tablet, medication, treatment or therapy is relevant, it’s best to include it anyway. If you have medication to help you with side effects from another medication, you should include it. Also, if there’s medication you should take but can’t because of the side effects you have, include it here too.”

I won’t go through all the questions as you can read through yourself on this link but I strongly advise that you use this brilliant tool when filling in the forms. Note everything, don’t assume they will read between the lines (they won’t) and don’t assume that your doctor will explain it.  If you can evidence it, then do so.  Use doctors letters, prescription forms, ask your doctors for letters and evidence of absolutely everything.

Give examples or describe specific incidents where possible. Don’t just say “I am at risk of falls when getting out of the bath.” Instead say something like “Two weeks ago I lost my balance, slipped and fell when getting out of the bath. I hit my hand on the radiator and cut it. I lay there for a few minutes before I could attempt to stand up. Due to the weakness in my arms and legs it then took me several attempts before I managed to get up.”

Don’t be embarrassed to explain in detail the things you struggle with, use clear and concise language, for example “My ostomy bag can leak and has happened X times in the past week, when this happens the faecal matter burns my skin and gets on my clothes, I have to take off the appliance and clean myself, I have to shower and my clothes need to be rinsed and then washed.  Cleaning myself and putting on a new ostomy bag can take up to X minutes and if I have taken medication or am fatigued I need someone to help me by washing my clothes/helping me shower/assisting me”

An important question for us is number 7 – managing toilet needs.

This question is about how your condition makes it difficult for you to:

  • get on and off an unadapted toilet seat
  • clean yourself afterwards
  • if applicable, manage your incontinence

Try not to feel embarrassed, miss out information or put on a brave face. If you do, the DWP won’t get a true picture of how your condition affects you and this can make it harder to get PIP.

PIP and ileostomies

Question 7a

Do you use an aid or appliance to go to the toilet or manage incontinence?

  • Yes
  • No
  • Sometimes

You should probably tick “yes” if:

  • you’re incontinent and have to use aids such as incontinence pads
  • you use an adapted toilet seat or toilet – for example, it has handrails
  • you don’t use a toilet – for example, you use a commode or catheter instead
  • you use an aid either all the time or sometimes

Question 7b

Do you need help from another person to go to the toilet or manage incontinence?

  • Yes
  • No
  • Sometimes

You should probably tick “yes” if:

  • someone helps you (even if it’s just with your aid – for example, dealing with a used portable bidet)
  • someone is around in case you need help
  • someone reminds you to go to the toilet
  • someone explains how to clean yourself properly
  • you need help but don’t get it

It’s important you tell the DWP more by explaining your situation in the box. It’s your chance to give the DWP a true picture of the difficulties you face because of your condition. They’ll use this to decide if you get PIP. You can also use this space to explain what help you need but don’t get.

List all the aids you use:

  • to help you get on and off a toilet seat
  • to clean yourself
  • to manage any incontinence – clearly state if this includes incontinence pads, a temporary or permanent catheter, a colostomy bag, or similar

Never miss any aids off your list because you think it’s obvious and always:

  • explain how they help you
  • explain if you have to use them because you can’t use a toilet
  • make it clear if a health professional advised you to use them
  • include any that would help you if you had them

Make it clear if you need help but don’t get it.

If you do get help, give the relationship of the person to you (for example, carer or friend) and explain:

  • why they help
  • how they help
  • how often they help

Make it clear if you need them to:

  • always help you on and off a toilet seat
  • always help you clean yourself
  • help with just some of your toilet needs
  • be on hand – for example, to help only if needed or to make sure you’re safe
  • remind you to go to the toilet, empty your colostomy bag or wash your hands
  • explain how to use the toilet or clean yourself

Always explain what happens (or would happen) if you don’t get help. For example:

  • you’re more likely to soil yourself
  • you’re more likely to have an accident – for example, you’re epileptic and at risk of a seizure while on the toilet
  • you’re less likely to go out because you might need to go to the toilet

It’s ok to estimate how often you need help but say if you are. If it’s too difficult to estimate – explain why. For example, because your condition fluctuates.

Tell the DWP if you have or are likely to:

  • slip or fall when getting on or off the toilet
  • fall sick or get an infection because you find it hard to clean yourself

Make it clear:

  • why it can happen
  • how often it can happen
  • how you try to prevent it – for example, you rely on a handrail or someone to help you
  • if it’s because someone didn’t help you
  • if it’s because you get confused or have trouble remembering

Tell the DWP if it takes you twice as long as someone without your condition to do any of the following:

  • get on and off an unadapted toilet seat
  • clean yourself
  • wash your hands afterwards

Try to explain how long it takes. It’s ok to estimate but say if you are. If it’s too hard to estimate explain why.

Remember to:

  • include time for breaks if you need them
  • explain if it takes you even longer on a bad day

Explain how you cope managing your toilet needs on both good days and bad and how you manage over a longer period of time (like a week). This gives the DWP a better picture of how you cope most of the time.

Make it clear:

  • if you have good days and bad days
  • how often you have bad days
  • if you have bad days more often than not
  • how your difficulties and any symptoms differ between goods days and bad

Explain if the difficulties you have getting on or off the toilet, cleaning yourself or managing your incontinence cause you any physical or mental symptons. For example, pain, tiredness or stress.

It’s helpful to explain the symptoms and give an example, including:

  • how often you have them
  • how long they last
  • if they’re likely to increase the risk of an accident or you soiling yourself
  • if they affect your ability to carry out any of the other activities on your PIP claim form – for example, you’re so anxious about managing your incontinence that it prevents you from going out

For example “Sarah finds it difficult to manage her toilet needs so she doesn’t eat or drink properly or go out with her friends as much as she used to because she’s anxious about having to go to the toilet.”

Remember that the person who assesses your PIP claim may have very little knowledge of Crohn’s Disease or Ulcerative Colitis. They won’t have any background knowledge of your personal circumstances or history. They probably won’t have access to information about other benefit claims you have made or previous medical assessments. Don’t just tick the tick boxes – write in the larger boxes and describe exactly how your condition affects you.

Don’t worry about repeating yourself on the form. You may need to repeat the same information for different activities. For example, if you suffer from pain on bending this could affect your ability to cope with several different activities such as bathing, wiping yourself clean after using the toilet, and getting dressed. If that is the case you will need to repeat several times that you have pain on bending.

Many people find that it is easier to cope with a health condition or disability by being positive, or by accepting limitations in what they can do. Just for the purposes of the PIP form, you need to focus on your limitations, and whether activities are difficult or painful. For example, you may have grown used to taking your time to get dressed, putting up with pain when you bend over to put on shoes and socks, or having to wear shoes without laces. Talking things through with a friend or relative could help to get a realistic picture and make sure that you don’t leave anything out.

Remember, the PIP assessment is based on whether you are able to complete the activities reliably:

Can you complete each activity safely, or is there a risk that you could injure yourself or make your condition worse by doing it?

Can you complete each activity to an acceptable standard? Or do you have difficulty doing it properly because of your condition?

Can you complete each activity repeatedly (as often as is reasonably required for that particular activity)? Or do you have to rest for a long time after completing the activity?

Can you complete each activity in a timely manner? Or does it take you much longer than it would take a person who didn’t have a disability or health condition?

I know this is a lot to take in and this is why it is important to take your time and get support in filling in the forms.  It may be useful to photocopy the forms before you send them back so you can refer to them for the later stages of application.

Evidence and explaining clearly is key at this point, PLEASE use the resources at CAB and Crohns and Colitis UK, they both talk you through each and every question.

If your condition fluctuates (you have good and bad days) it can be helpful to keep a diary. A diary is a handy way to record your bad days and how they affected you. You could use a diary as evidence as well as use it to help you fill in your PIP claim form. To help you, you can use our template diary. You can also ask someone to help you write it.

Download: template diary to help you keep a record of how your condition affects you [ 78 kb].

The form must be returned within 30 days of the date it was sent out. The DWP will tell you the deadline for returning it. If you miss the deadline for returning the form, your claim will be refused unless you can show that you had good reason for the delay. Illness, mental health problems, or personal factors such as bereavement could count as good reason for returning the form late, depending on your situation.

If you think you will be late returning your form – for example, because you are ill or because you are waiting for an appointment with an adviser – phone the DWP to tell them and ask for an extension. If you have already missed the deadline and are returning the form late, include a covering note or letter to explain why.

PIP help for ulcerative colitis crowns and ileostomy

Next stage – face to face consultation/assessment

You will be invited to a face to face consultation where you’ll be asked questions about your ability to carry out activities and how your condition affects your daily life. The meeting will usually be at an assessment centre, and will take about an hour though you can request an assessment at home.

It’s an opportunity for you to talk about how your condition affects you – it’s not a diagnosis of your condition or a medical examination. Assessments are carried out by a health professional who will write a report and send it to the DWP.

You should be prepared to talk about how your condition affects you even if you’ve already detailed it on your PIP claim form. It can be hard to do this but it will really help if you can talk about:

  • the kind of things you have difficulty with, or can’t do at all – for example, walking up steps without help or remembering to go to appointments
  • how your condition affects you from day to day
  • what a bad day is like for you – for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything’

It’s a good idea to take a copy of your PIP claim form with you. That way you can refer to it in the assessment and make sure you tell the assessor everything you want them to know about your condition.

Don’t let the assessor rush you and try not to just answer ‘yes’ or ‘no’ to their questions. Always try to explain how doing something would make you feel afterwards and the impact it can have on you if you had to do it repeatedly in a short period of time.

Download the PIP assessment help sheet – to take with you to your assessment [ 97 kb].

Print it out and take it with you. It includes tips on what to take to your assessment and dos and don’ts during the assessment.

The assessor will use the information you gave on your PIP claim form but also draw opinions from what you say and do on the day. For example, they might ask you how you got to the assessment centre. If you say you came on the bus, they’ll make a note that you can travel alone on public transport.

You might also be asked to carry out some physical tasks during the assessment. Don’t feel you have to do things in the assessment that you wouldn’t normally be able to do. If you do them on assessment day, the assessor may think you can always do them. If you’re not comfortable with something – say so.

You can take someone with you as long as they are over 16 and I would recommend this, someone who knows you and your impairment can be really helpful.  If you usually have someone with you when you go out to somewhere new then do take them with you.  They can take notes for you and take part in the discussions.

If you need any adjustments then say so, do you need a lift? Do you get anxious in small spaces? let them know.  You must go to your assessment otherwise your PIP claim will be rejected and you’ll have to start the application process all over again.

You may ask if you can record the assessment, but centres will have rules around this.  If you secretly record your session and they find out, they can end the assessment, your recordings can also be inadmissible in any appeals.

The assessments can feel stressful and overwhelming, you may read about other people’s experiences and feel worried but it is important that you attend.  Be honest and clear about how your disability or illness affects you.

I have applied and been turned down for PIP once (and I am trying again), one of the reasons they turned me down was that I “looked clean and well kempt”, they didnt ask about how difficult it had been to get washed and dressed that morning or about how I would be in bed for the rest of the day afterwards.  Im not saying you should deliberately look dirty but making the effort to look nice for the appointment went against me and next time I will go how I feel that day.

In your assessment, you need to be totally honest, but make sure that you are honest about how you are on a bad day.  Don’t put a brave face on it, be clear about how your illness affects you and your life.  Be aware that there are sometimes cameras outside and in the waiting areas and these may be used in them making their decision.

If you can arrange for somebody to give you a lift to the assessment centre, that is probably the best option. If you travel by public transport or drive yourself, the health professional may draw conclusions about your ability to walk or do other activities. You can also claim travel expenses, ask the receptionist at the assessment centre for a travel expenses claim form and pre-paid self-addressed envelope. Include all your tickets and receipts with the claim form.

On the day of your assessment you may need to get up extra early to eat before leaving the house, or take anti-diarrhoeal medication. It is worth mentioning if you have had to do this. Be clear on what difficulties you may have faced in attending the assessment.

The health professional may begin by asking how you travelled to the assessment centre. They may treat your answer as evidence of your ability to walk or plan a journey, so it’s important to mention any difficulties that you had on the journey. For example, if you had to walk from your home to the bus stop it’s important to mention if the walk was slow or painful. Or you may have needed a lift and been dropped off right outside the centre.

The health professional will ask questions about your health condition(s) or disability and what treatment, therapies or medication you are using. They will ask about how your condition affects your day to day life. They may ask you to describe a typical day. If your condition fluctuates they will ask you to explain more about how it varies.

The health professional will probably ask you about activities which are not directly included in the assessment, such as whether you work, do housework, go shopping, take part in hobbies or look after children or pets. Your answers to these questions may reveal evidence about whether or not you have difficulty with things like bending, walking or using your hands. This can help to show whether you are likely to have difficulty with the other activities included in the assessment. If you have had to give up hobbies or activities you previously enjoyed, or if you can only take part in social and leisure activities occasionally because of your health condition, make sure you explain this.

When answering the health professional’s questions, remember to explain if you have difficulties with performing the relevant activities reliably. Don’t get caught out by leading questions into giving an overly optimistic picture of your abilities. For example, if you have difficulty walking then, in your case, ‘walking the dog’ might involve walking a few metres from a car park to a park bench and then letting the dog run around while you sit and rest. Or perhaps you have to walk to collect your children from school because there is nobody else to do it, but the walk is very slow and painful for you and you have to rest for a long time afterwards. Explain this, and avoid leaving the impression that you can walk a long distance without difficulty if you really can’t.

The health professional may carry out a physical examination or do non-invasive tests such as testing your blood pressure. They may ask you to perform certain tasks or movements, such as raising a leg or bending over. However you should not be forced to do anything which would cause you pain. They won’t ask you to do a formal walking test, but they are likely to observe how you walk from the waiting room to the consultation room and how you move around during the consultation.

Throughout the consultation the health professional will also observe how you cope with activities such as removing your coat, handling your bag and holding a conversation. If you are having a consultation at your home, they will notice the home environment and any aids and adaptations. If they are in your home they shouldn’t look into rooms that they haven’t been invited to enter.

If you bring any written evidence to a face-to-face consultation, the health professional should take a copy of it and take it into account when completing their assessment report.

sam cleasby ibd blogger

Waiting for the response

It can take between six to eight weeks to find out the result of a PIP assessment. However, if you need to find out more about the status of your claim, then the contact info for ongoing claims is 0345 850 3322.

PIP rates

PIP is made up of 2 components (parts) called daily living and mobility, and each can be paid at either a standard or enhanced rate.

Component                                                Weekly rate
Daily living – standard rate                       £55.65
Daily living – enhanced rate                       £83.10
Mobility – standard rate                       £22.00
Mobility – enhanced rate                       £58.00

Appeal

If you are turned down for PIP or if you receive an award lower than you think is correct, you can appeal the DWP’s decision.

Mandatory Reconsideration

The appeal process starts with asking for a Mandatory Reconsideration within 30 days of receiving your decision. You can apply for a reconsideration by writing a letter to the DWP explaining why you disagree with the decision.

You need to give specific reasons why you disagree with the decision. Use your decision letter, statement of reasons and medical assessment report to make a note of each of the statements you disagree with and why. Give facts, examples and medical evidence (if available) to support what you’re saying.

The DWP doesn’t have to make the decision within a specific timescale and sometimes it can take several months to get your decision letter – this letter is called a ‘mandatory reconsideration notice’. You’ll be sent 2 copies – you’ll need to send 1 off if you need to go to the next stage of appeal.

If the DWP changes their decision, you’ll start getting your PIP payment straight away. Your payment for PIP will start from the date of the original decision. If you’re challenging the rate you’ve been put on and the DWP changes the decision, they’ll pay you the difference for the time it takes them to make the decision.

Don’t be put off if they don’t change the decision, not many decisions are overturned at this stage. More decisions are changed after the second stage of the challenge – if your mandatory reconsideration is turned down you can appeal to a tribunal.

Appeal to tribunal

DWP will look at your claim and tell you their new decision.

  • You have a month to ask for an appeal if you are still unhappy.
  • This must be in writing and it’s best to appeal using form SSCS1 (pdf download). Download the pdf of guidance notes to help you.
  • You must state your reason for the appeal clearly and forward any supporting evidence as soon as possible – do not wait for the hearing.

You can download Form SSCS1 (pdf)

Section 5 is where you must state your reasons for your appeal. You must write down the reasons why you think the decision is wrong. Your reasons do not have to be lengthy or written in legal language, but you need to say more than just ‘I disagree’. Explain simply why you think the decision is incorrect and what you believe the correct decision should be.

Send your appeal to HM Courts and Tribunals Service. If you live in England or Wales you should send your appeal to:

HMCTS SSCS Appeals Centre
PO Box 1203
Bradford
BD1 9WP

Telephone: 0300 123 1142

Don’t forget to sign the form and enclose your mandatory reconsideration decision letter.

The latest government statistics show that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, so do challenge the decision if you think it’s wrong.

The DWP will look at their decision again once they have received your appeal. They can revise your award at any point up until the hearing if for example, you send in new evidence.

You will be told the date of the hearing 14 days in advance. You should receive directions to the venue with transport links, accessibility information and also expenses. Review your paper evidence and think about what extra evidence you might need. Attending the hearing and telling the panel about your disability counts as evidence.

You can send in evidence at any point up until the hearing but don’t save it all up for the hearing as this could delay matters.

All papers relating to the appeal will be sent to the panel members before the hearing. This will give them the chance to identify if there are any problems or issues that may affect the hearing from going ahead.

Going to tribunal hearing

Take someone with you. This can be your representative if you managed to find one, could be your partner, a family member or a friend.

The tribunal will be made up of a tribunal judge, a doctor and a disability specialist. All are independent from the Department of Works and Pensions. Their role is to check the DWP’s decision and to ensure that the law has been applied correctly.

This is your chance to talk about how your disability affects you, how you feel you meet the descriptors and anything else that went wrong during the assessment process. Normally tribunals will make a decision on the day and will confirm this in writing but sometimes the decision will be made and then sent to you at a later date.

If you’re unhappy with the decision made by the first-tier tribunal, there is a further appeals process. You can appeal to the Upper Tribunal if you believe there has been an error in law.

This is a very complex area and you will need the help of a solicitor or a welfare benefits specialist. There may be some legal aid available to help you with your case.

I know this has been a long and complex post but it is a long and complex process, I hope it has helped.  Lots of the information here has come from CAB, Crohns and Colitis UK and Scope, so massive thanks to them all for sharing such valuable resources.

For more information please take a look at the following:

CAB – help filling in the PIP forms

Crohns and Colitis UK – PIP

Scope – Appealing a PIP decision

 

Sam xx

Independent Advisory Group – South Yorkshire Police

I was over the moon to be asked to join an Independent Advisory Group for South Yorkshire Police recently.

It is a chance to offer input on how they police our communities and how they can better meet their needs.

The Independent Advisory Group (IAG) aims to discuss the impacts of policing on different communities and look at ways in which we can improve the policing service to the diverse communities within Sheffield.

A/Chief Inspector Shak Ahmed, said: “As a member of the IAG you’ll offer us helpful and constructive criticism, helping us to build and develop an insight into the needs and wants of communities who may be under-represented in Sheffield.

“This is a chance for you to challenge the way we think and share your beliefs on how we work, to ensure our work meets the requirements of members of the community as we are keen to ensure the group reflects Sheffield’s diverse communities.”

Sam Cleasby sheffield

As someone born and bred in Sheffield I care about my community and it’s important to me for the police to be held to account and ensure that underrepresented groups’ needs are met.

I have lived experience of disability and chronic illness as well as my professional experience of working with disabled people every day.  Disabled people are notoriously underrepresented in society and often the needs of disabled people are not appreciated and so I hope I can make a difference.

As well as this my background is ethnically diverse and it’s important to me that we consider the diverse groups of people in South Yorkshire.

I love Sheffield and I care massively about the disabled community and so I just hope that I can do something good for people in South Yorkshire. I know I’ll get told off for fitting another thing into my already hectic life but it means so much to me to give something back and to help others.

My first meeting is later this month and I am so excited! Wish me luck and if you have any thoughts on how the police can be more inclusive to disabled people, please do let me know!

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