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

19 years ago in The Leadmill…

19 years ago in The Leadmill nightclub in Sheffield I met Timm.  I’ve told the story before but I had seen him the week before and not had the confidence to say hi, then I spied him in the DJ box working, my friend Liz went and said to him “my mate fancies you” and the rest, as they say, is history!
Sam and Timm Cleasby

I can’t believe we’ve been together so long!!! I don’t feel old enough to have been with someone for 19 years. I’ve been with Timm for longer in my life than I haven’t.

Its not been an easy ride, he worked away as a tour manager for the first 12 years of our relationship which took its toll. It’s hard to stay close when you’re apart for months at a time but we got through it.

We had three kids in 4 1/2 years so there were manic times where we barely had time for one another but we had a blast. We’re not perfect parents, we rarely do things by the book but we love our babies more than anything and we are a great team.

Sam and Timm Cleasby

Timm was my first love, I was only 17 when we met and my life was chaotic, we had a crazy couple of years of fun and silliness before we had Charlie in 2000, followed by Ellie in 2003 and Thom in 2005. We’ve had 6 houses in that time, job changes, times when money was tight, travels around the world, good times and bad.

We married in Las Vegas in 2004 at the Viva Las Vegas chapel by Elvis and renewed our vows in 2014 at home in a garden ceremony with all our family and friends.

Sam and Timm Cleasby

The past few years have been the toughest of our lives, my ulcerative colitis really took hold of my body and I had my first surgery in 2013 to remove my colon and had my first ileostomy. Since then I’ve had 4 more surgeries and Timm has been my rock.

There have been times when I’ve told him to leave me, when it’s been so hard that I couldn’t bear to put him through it any more. But he’s always been right by my side.

We make a good team, Timm and I, and though it sounds cheesy, we are closer and more in love now than ever before. Something happens when you’ve been together so long, you know eachother inside and out and the level of comfort and safety really kicks in. That’s not to say things are boring, nor do we take eachother for granted but life just becomes easier.

Of course we argue, we fall out and disagree, there are times when we scream and shout, when we get the face on and ignore eachother. I don’t think anyone can be together for so long without there being times of conflict. But we are learning all the time how we can best sort out our arguments.

Everything honestly is better when we are a team, when we fall out, it feels like life is just tougher to deal with. When we are side by side, I feel I can take on the world.

19 years have passed in a heartbeat, I still remember the feeling of butterflies in my stomach as he handed me this chipped Leadmill mug of champagne all those years ago.

Timm, you’re my everything. I wouldn’t be here without your continuing love, support and piss taking. You make me laugh, you deal with all my illness and surgeries with a shrug like it’s no big deal, you hold my hand when I’m struggling and you listen to me when I can’t bear to say things to anyone else.

 

We joke that some things are NSFT (Not Safe For Timm) because he cries at anything remotely emotional. I take the piss out of him for this but I secretly love it. As he has got older he is so much more open with his feelings, he has dealt with a lot during the past few years and sometimes I forget just how hard it has been for him. But it has made him softer and more loving, and that has to be a good thing.

family photo shoot with teenagers in Sheffield urban kelham island

 

We don’t always do gifts but this year I saw this and couldn’t not get it, from The Night Sky who create star maps of certain locations and times, this is the night sky over Sheffield 19 years ago today, these are the stars we looked at on the night we met, the night it all began.

The night sky Sheffield stars

I  so lucky to have grown up with my best friend, 19 years of laughter, being proper daft, of loving and crying and facing all the shit that life has thrown at us.

Cleasby, happy anniversary bubs xxx

Connect Magazine – IBD, a partner’s perspective

If you’re a Crohns and Colitis UK member and get the Connect magazine then you may recognise the folk on the cover!

Crohns and Colitis uk connect magazine Sam Cleasby

 

Thanks to the guys at Crohns and Colitis UK for featuring us and for such a lovely feature.

Crohns and Colitis uk connect magazine Sam Cleasby

 

Sam xx

Stomach bugs and ileostomies

DON’T WAIT!! That’s my general advice on the subject of stomach bugs and ileostomies, don’t wait to see a doctor. If you’ve been ill for more than a day or so with vomiting/diarrhoea/stomach pain, call the doctor!!!

Obviously I don’t follow my own advice and so I’m kind of writing this to my future self as a reminder to not be a dick. I think I’m superwoman when I get ill, I think I’ll just power through it.  I tend to think that 5 surgeries haven’t toppled me so I’ll be damned if a belly ache will!

Which is stupid.

If you don’t have a colon, it’s best to not fuck about with these things.  We can get very quickly dehydrated which is not something to mess with. What is a bit of a nasty bug for a person with a functioning gastrointestinal tract can be quite devastating for those of us missing parts of the bowel.

On Wednesday I was working in town and feeling a little queasy but ok, then I quite quickly got very hot, very tired and my stomach hurt.  I was in a coffee shop and felt wetness on my legs, I thought I’d knocked my coffee over but looked down and realised that my bag had leaked. It had filled to bursting in minutes and had leaked down the back of the seal.  Not good.

Woman with ostomy bag

Post lunch, Pre bag blow out

So I came home and felt grotty for a couple of days, I had terrible diarrhoea and tummy pain and felt really run down. But still I powered through and managed to work from home.

On Saturday my symptoms seemed to ease a little and so Timm and I went to the cinema, by the end of the day I felt really queasy. I knew it must be bad as I couldn’t even finish my wine!

By Sunday night I was crying in pain, my bag was filling with water around once an hour, anything I drank seemed to go straight through me. I had gotten myself dehydrated and I felt sick as a dog.  I was shaking, hot and felt like I was going to pass out. I thought I was going to need to go to A&E and I was pissed off. I felt stupid for letting it get to this point, my feelings of not wanting to overreact were ending up in more trouble.

Thankfully my stomach calmed enough for me to get some sleep but this morning I knew I needed to see a doctor. I called in sick to work (which I HATE doing) and got an appointment at the GP. One good thing of having an ostomy is that it terrifies the doctor receptionist! One mention of the bag tends to get me straight in!

I saw the doctor this morning who got me straight in for blood tests and a stool sample (another positive of an ostomy bag! Easy access to poop!) and has got me straight onto Cipro antibiotics with strict orders to rehydrate and rest.

I usually use Diaralyte but I’m trying the chemist own brand today along with a strawberry flavoured one called ORS which actually taste really nice so these may be my rehydration go to from now on!

Ciprofloxacin antibiotics

 

I wish I’d gone to see the doctor last week when things weren’t so dire. I’m waiting back on the results he says he’ll rush through now to see if I’ll need any further treatment.  If I end up back in hospital I’m going to be fuming with myself.

Often we are scared to seek medical advice because we don’t want to cause a fuss, we worry that it’s not that big a deal but please if you’re struggling with a stomach bug/stomach flu/gastroenteritis or general vomiting and diarrhoea and you have an ostomy, jpouch, missing bowel, please don’t wait.  Get medical advice as soon as you can.

I’m on bed rest today and hope I’ll feel better soon, till then I’ll snuggle back down with my ridiculously cute Lemmy.  Timm caught us this morning in full on chronic illness cuddle mode…

 

Stomach bug and ostomy

 

Sam xxx

Body Fixers – My body doesn’t need to be fixed

Last year I was asked if I would appear on the channel 4 show Body Fixers, I considered it but decided it wasn’t right for me.

The name of the show goes against many of my morals and the ethos behind this blog, the idea that you need to fix yourself to look like other people and fit in with a socially acceptable ideal is not for me.

I was told how it would be a great opportunity to raise awareness of Crohns, Colitis and ostomy bags and the fact that it’s currently in the newspaper shows that could have been tha case, but reading this article I know I made the right decision.

The headline is ‘Crohn’s sufferer stunned by amazing transformation after 12-inch scar ‘disappears’ in Body Fixers’ and tells the story of Scott who has Crohns Disease and has a 12 inch scar after surgery. He says that the scar makes him feel self conscious.

He says: “When I first got it, it was quite thin buts it’s got wider, and as I’ve got older its got a lot hairier, and I’ve kind of got to the point where I don’t want to take my clothes off and show it.”

glastonbury accessible toilets invisible disabilities

The show uses lasers to treat the scar to reduce its visibility, before using his own blood cells to help regenerate the skin leaving Scott’s scar vastly reduced. He says he is happy with the results.

Now although this isn’t for me, I’m not having a go at Scott, I understand that scars and body changes are hard to deal with, that it does affect your self esteem, but for me the issue is more about looking at the root of the problem, why do we feel the need to “fix” people whose bodies are different to the “norm”?

My body is scarred. Like a LOT of scars.  I’ve had 5 surgeries in the past 4 years, I’ve been cut from sternum to pelvis a few times, I have been stitched and stapled together over and over again and my body is covered in shiny scars, some thickened keloid scars.

I have a permanent ileostomy bag and my body has changed beyond recognition.  But this is not something that needs to be fixed.

Its not to say that I haven’t struggled with self esteem and to learn to accept my new body, but the idea that I need to be fixed by a tv show doesn’t sit right with me.  The idea that my body could be a source of entertainment, a way for people to feel better about themselves, a pity party? That’s not for me.

The line between raising awareness and being fodder for the masses is one that I teeter on often.  I get offered a lot of magazines and TV work, and I turn down quite a bit as it’s so important to me that what goes out in my name is something that is respectful to those in a similar situation to me and more and more I find that shows are about using the emotional stories of disabled or chronically ill people to sell their wares.

Sometimes my image and story is used entirely without my permission.  Sometimes newspapers tell me they are running a story and I can be part of it or have no say…

sam cleasby chicken keeping allotments kiveton sheffield

Its the nature of the beast I suppose, I put myself out there and once your image and story is in one paper, others feel they have carte blanche to use it too. But that’s a whole other story!

I worry that people will watch the show (it’s on tonight on E4 at 9pm) and look at their own scars and wonder whether they too should be ashamed and self conscious, should they have their scars removed in expensive cosmetic treatment? I worry that people who are feeling vulnerable, who have scars like this man will feel pressured into hiding them away as a source of shame.

This isn’t about one mans choice, it’s about how we simply don’t see people with scars in mainstream tv or magazines everyday.  We don’t see people who are happy with their bodies, who are proud of their scars.  And so when people with scars are seen with such a negative connotation then that becomes the norm.

Im not against people having treatment to reduce scars at all.  But where is the alternative? Where is the show that says ‘hey, your scarred body is beautiful and sexy and wonderful, let’s celebrate it you awesome lovely!’?

My body isn’t perfect. It is scarred and marked and wears an ostomy bag. It has stretch marks and lumps and bumps.

But it is mine and it doesn’t need to be fixed so it’s easier for you to look at.

 

Sam xx

 

the dark smog

I finally feel that I have enough energy to post about how things have been for me recently. I have posted about feeling down and anxious and seeing a counsellor but things have got worse and the last week has been the toughest time of my life.

Ive felt things slipping for a while, work has been stressful, my hernia is back (that’s a wholllllleeee other post!), my mum fell out with me in May and hasn’t spoken to me since, counselling brought up a lot of things from my childhood that aren’t resolved, Timm and I are having a rough time and so I’m really overwhelmed right now.

My sister came over from Australia for work for a few weeks which was amazing!!! But her going back is just a reminder of how far away she is. At the minute it feels like she’s the only person in my close family (not including Timm and the kids) who loves me and gives a shit, so her heading back home was tough and I miss her terribly.

But really, I don’t know what sparked this low point off. The past couple of weeks have been dark, this week I literally didn’t have the energy to move. I lay in bed hiding from the world.

I managed to work (I work from home) and so I kept things going on that side, but everything else went to shit. I couldn’t breathe, I couldn’t think, I couldn’t move. Everything felt pointless, I felt pointless.

I suppose the biggest thing is that I’ll need another surgery and that has hit me hard. I just can’t believe I’m back to square one and I’m devastated. It’s made me feel so down on myself and my body. I feel like a failure. I feel like a burden. I feel like I only bring stress and shit (both literally and figuratively) to the people around me.

The thought of leaving the house and speaking to anyone made me cry and shake. I cancelled all plans. Even those with my best friends, I just couldn’t bring myself to move, let alone speak.

But for once I was honest about it, I text them and explained I was struggling. That was hard to do but I didn’t want them to think I was cancelling (yet again!) because I didn’t care. I didn’t want to be a shit friend.

I cancelled on my cousin for her child’s birthday party. But again, I was honest. I said I was struggling and couldn’t deal with a crowd.  I did joke that I should have come up with a more socially acceptable excuse but it actually helped to tell the truth.

I felt dark. Like everything was black and heavy. Like gravity had gone into overdrive and my body weighed more than is humanly possible. My mind went from spinning and whirling with terrible thoughts, to blank, silent numbness.  My mind was telling me how useless and worthless I am, it told me what a huge burden I am to everyone, it told me everyone would be better off without me.

It hurt.  No one ever told me that depression hurts, like physically pains you. My chest hurt, my head pounded, my mouth was dry and became ulcerated. My limbs ached, my back hurt, my eyes were dry and raw.

It came to a head on Friday, I exploded in grief and rage and fear and hurt. I threw it all at Timm and pushed him away from me. I said horrible things to hurt him. I told him to leave me.

I screamed and raged at him, I whispered the dark thoughts from my head and then waited for him to leave.

Because everyone leaves. My experience in life is that people who are meant to love you, they walk away and it tells you that you are worthless, that you literally aren’t worth the effort.  My dad did it, my mum has now done it, my sister doesn’t speak to me, cousins who I grew up with turned away at the blink of an eye, aunties block you without thought or care.

Everyone leaves.

Only he didn’t.

He kissed me and stroked my hair.  He rubbed my back and whispered words that told me I’d be ok.  He told me we were a team. He ran me a bath as I’ve not had the energy to bathe for a while. He loved me. He told me he has a choice, that he can choose to leave if he wants but he isn’t going anywhere.

He didn’t leave.  He stayed and loved me.

And it gave me a tiny bit of strength back, it helped me get dressed and take the kids to the opticians with him, it helped me to leave the house and see friends.  It showed me a crack of light in this dense, dark smog that is smothering me, it made me smile.  Even if it was only a small smile.

Its not a cure all. I’m not ok now, but I have slipped my fingertips into that chink of light and through it I can pull enough energy to call the doctors on Monday. It is just enough to allow me to ask for help.

And that’s what I will do.

 

Sam xxx