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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

My boy is raising money for Crohns and Colitis UK

My youngest son Thom is 10 and has beautiful long hair that he has been growing for a few years.  He has decided to raise money for Crohns and Colitis UK by cutting all his hair really short!

I have Ulcerative Colitis and in 2013 I had a colectomy and ileostomy, in 2014 I had more surgery to form a J-Pouch.  It has been a really difficult few years and as family we have had a lot to deal with.

A chronic illness doesn’t just affect the person who is ill, the ripples spread through the family and friends and my children have had a stressful and upsetting time seeing me go through surgeries and treatment.  I am so proud of the way they have dealt with it all and couldn’t be happier that Thom has decided to raise some money for CCUK.

Crohns and Colitis UK provide advice, support and help to the almost 300,000 people in the UK with IBD – they are a great charity and we are pleased to raise money for them.

crohns and colitis uk

 

A message from Thom

Please donate some money because my mum has suffered with lots of pain with her surgeries.  It’s been very hard for me because I didn’t get to see her much and when I did she was feeling ill and it made me sad.

Im cutting off my long hair to raise some money for the charity that helped my mum so they can help lots of other people too.

Love Thom x”

 

sam cleasby mum parenting blog

 

He is hoping to raise £100 and so please head over to his Just Giving page now and give what you can!

 

Sam xxx

Give us your f**king money…

Oh, apologies, I came over all Geldoff then!!

JustGiving - Sponsor me now!

For the past 18 months I have been raising awareness, spreading positivity and sharing my journey with Inflammatory Bowel Disease.  I do this through this blog, Facebook, youtube and twitter because it means so much to me to be able to share my story and let other people with IBD know they aren’t alone.

In 2004 I was diagnosed with Ulcerative Colitis and in 2013 I had a colectomy, surgery to remove my large intestine, I had an ostomy bag for 8 months and then had more surgery to create an internal pouch.  My 11 year journey has been hard, the last 18 months have been to toughest of my whole life.  I battle every day and my road to recovery is long and arduous.

so bad ass sam cleasby

Crohns and Colitis UK mean an awful lot to me and so my aim for 2015 is to make as much money as possible for this great charity to get more support for sufferers and give money for research to find better treatment for the future.

I will be doing a variety of things to raise money over the coming months, and if anyone has a spare pound or two to put in the pot at any time, it will be greatly appreciated.

crohns and colitis awareness week

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

stoma ileostomy photo shoot woman beauty

Thousands of you are reading this blog each month and if you could all donate just a pound or two it would make a MASSIVE difference.

So please make a donation, make a difference…

 

JustGiving - Sponsor me now!

Love Sam xxx

Help with water bills

I have just discovered that people with Ulcerative Colitis, Crohns, a stoma or other long term illnesses that mean they need to use a lot of water could be entitled to reduced water rates.

The Watersure scheme caps your water payments.  To qualify you must…

  • be on a water meter or have applied for one and be waiting for it to be installed
  • be on certain benefits
  • have a high essential use of water.

watersure help with water rates for people with ulcerative colitis, crohns disease or a stoma

Either you or someone in  your household must get one of the following benefits:

  • income-based Jobseeker’s Allowance
  • Income Support
  • income-related Employment And Support Allowance
  • Pension Credit
  • Housing Benefit
  • Working Tax Credit
  • Child Tax Credit awarded at a rate higher than the family element.

 

High essential use of water means if you or someone in your home has a medical condition which they need to use a lot of water OR get this parents, if you have three or more children under 19 in your home.

These medical conditions automatically qualify as long as you meet the other requirements…

  • desquamation (flaky skin disease)
  • weeping skin disease (eczema, psoriasis or varicose ulceration)
  • incontinence
  • abdominal stomas
  • renal failure requiring dialysis at home  – although you won’t qualify for Watersure if you’re already getting a contribution to your water costs from the NHS
  • Crohn’s disease
  • ulcerative colitis.

You can also apply for Watersure if there is someone in your household who has another medical condition which means using higher than average amounts of water.  Water companies will ask for details from a doctor.

Apply by filling out a form from your water supplier, I looked on Yorkshire Water website and just downloaded it.

This sort of help is fantastic but no one tells you about it! I just happened upon it accidentally and Im filling the forms in now.  Im shocked about the three or more children rule, I don’t think many people know about this at all!

 

So take a look, hope it is of help for you all

 

Sam xxx

House of Commons Prescription Charges Debate

As a result of Prescription Charges Coalition campaigning, Lib Dem MP Sir Bob Russell, has secured a Parliamentary debate on prescription charges on Wednesday evening. We need as many MPs as possible to speak, to show the Government how serious an issue this is. 

Use this UK Parliament tool  to identify your MP and their e-mail address, facebook or twitter handle, and ask them to go along and represent you in the debate! Use the hashtag #prescriptioncharges. 

The Prescription Charges coalition have put together some information that you can find here – take a look and get involved.

The main points are outlined below…

 

A Parliamentary Briefing from the Prescription Charges Coalition
Prescription Charges and People with Long-Term Conditions
About The Prescription Charges Coalition
The Prescription Charges Coalition is an alliance of 28 organisations concerned with the detrimental impactthat prescription charges are having on people with long-term conditions in England. Following a survey of nearly 4,000 people with long-term conditions, the evidence-based report
Paying the Price was published in March 2013. Over 3,000 people have since contacted their MPs on this issue.
The Issue
Many people of working age with long-term conditions in England today are struggling to afford theirprescribed medicines and are severely compromising their health as a result.Extending exemption from prescription charges to all those with long-term conditions, as supported by theprevious Government,
on the basis outlined in Professor Sir Ian Gilmore’s
Prescription Charges Review would remove a major barrier to accessing medicines.Removing the cost barrier to effective medicine-taking for people with long-term conditions is likely to:
Improve individual quality of life and health outcomes
Reduce health service costs, including unplanned hospital admissions, arising from people nottaking their medicines as prescribed due to the cost
Reduce health inequalities
Better enable people with long-term conditions to maximise educational and employmentopportunities, support themselves and their families and contribute as fully as possible to society
What we are calling for
A clear commitment to extending medical exemption criteria to include all those with long-term conditions
as part of patient-centred care
and completing the work begun by the previousGovernment. This could be implemented through a phased reduction in the cost of the PrescriptionPrepayment Certificate, using a broad definition of exemption criteria, based on the duration andmanagement of the condition, with the exemption reviewed after three years.
Flexible prescribing
– frequency and duration of prescriptions for people with long-term conditionswho are on long-term maintenance medication should be based on individual needs and circumstancesand agreed between prescriber and patient, not bound by rigid 28-day prescribing policies.
Information should be given routinely to people with long-term conditions aboutprescription charge exemptions, the prepayment certificate and the low incomes scheme, at diagnosis, as part of care planning and where medicines are dispensed, for as long as prescription charges remain in place.
Entitlement to prescription charge exemption should be retained for all those who arecurrently eligible following the introduction of universal credit
The Background
Prescription charges have risen every year between 1979 and 2010 (and since), and currently stand at£7.85 per prescription item.
Prescription Prepayment Certificates can be purchased to cover all prescription items for a three or 12-month period at a cost of £29.10 or £104.00 respectively.
Prescription charges were scrapped for all in Wales in 2007, in Northern Ireland in 2010 and in Scotlandin 2011. Audit Scotland and Welsh Assembly research shows that this has not led to an unusualincrease in prescriptions.
The NHS spends £8.8bn on pharmaceuticals in primary care. £500 million is thought to be wasted dueto the ineffective use of medicines. Five to eight per cent of hospital admissions are related toineffective or inappropriate use of medicine
Prescription charge exemption criteria were set in 1968 and have hardly changed since, despitesignificant medical and technological changes
There is a wealth of research, including international studies, which shows that cost has a key impacton medicines-taking behaviour and therefore needs to be addressed within medicines optimisation
The Health Select Committee considered the system of charges to be “a mess” and medical exemption criteria to be “confusing” and “outdated” in its report on NHS Charges published in July 2006.
Professor Sir Ian Gilmore was commissioned by the previous Government to carry out a PrescriptionCharges Review into implementation of exemption charges for all those with long-term conditions. Heproposed a phased approach, using a broad definition of long-term condition based on duration andmanagement of the condition, with the exemption reviewed every three years.
The Evidence
Recent research from the Prescription Charges Coalition shows that one third of those with long-termconditions, who are paying for each prescription item, have not filled a prescription due to the cost.
Many respondents reported missing doses, cutting tablets in half and substituting cheaper but lesseffective over-the-
counter alternatives to “eke” medicine out until pay day.
Of the 36% who reported not taking their medicine as prescribed, three quarters felt their health hadgot worse as a result and 10% said they had ended up in hospital as a direct consequence of not takingtheir medication.
Where people are taking their medicines correctly, they often report having to cut back on essentialhousehold costs, such as food, rent, utility bills or petrol to get to work in order to do so. This is also likely to impact on an individual’s condition and health outcomes.
The anxiety created by the fear of being unable to afford essential medication could also have a negative effect on the condition and the
individual’s ability to manage this.
This is affecting people with all kinds of long-term conditions of working age
I have to go without to get prescriptions but when my children need things then I have to go without my medication. I often cannot do both and so have to make that decision as to which should take priority.
(45-54 year old with fibromyalgia, high blood pressure and a mental health condition).
 I could not afford the prescribed medication for anxiety, so thought I would try and go without, ended uphaving panic attacks all over the place and losing my job
(16-25 year old, with asthma/respiratoryproblems, a heart condition and a mental health condition).
It’s a struggle when I have 4 children to provide for and need to pay for 4 different items on a prescription,also if I have a flare up of my colitis I don’t get any sick pay so therefore even harder to pay for my  prescriptions. And if I don’t take the tablets there is a risk of being hospitalised therefore surely costing theNHS more money?
(26-34 year old with inflammatory bowel disease and pernicious anaemia).
This month I cannot pay for a prepayment certificate – and I will not be able to get my medicines at all. Itake 15 different tablets and inhalers. I cannot choose which are the most important – so starting thismonth, I will have to go without my medicine.
(55-64 year old with arthritis, asthma/respiratory problems,high blood pressure and a mental health condition).
I ended up being hospitalised for 2 weeks because I missed 5 days of medication
. (16-25 year old withinflammatory bowel disease).
I always have to go without things to pay for my meds. Some less serious conditions get free prescriptionsbut CF doesn’t qualify even though we will die younger than others. This is cruel.
.(35-44 year old with cysticfibrosis).
I cut down on food in order to get medicines. I’ve also not paid some bills e.g. utilities so got into arrears
.(55-64 year old with HIV/AIDS)
It is possible to have all of the 28 conditions represented in the Prescription Charges Coalition and still pay for one’s prescription charges
Actions for MPs during adjournment debate on ‘Exemption of prescription charges for people with long-term conditions’ on Wed 10TH
July
The Prescription Charges Coalition would like to suggest the following points are raised during the debate
The Government has committed to “continuing to look at options for creating a fairer system of prescription charges”
but there has been no progress on this, as the list of exemptions has onlybeen amended once in 2009, to add cancer, since it was created in 1968.
There is a lack of relevant data into the costs and consequences of the current prescriptioncharging system and the potential gains of reform research is needed to inform policy-making
The Government reports that 90% of prescription items are dispensed without charge, but up tothree quarters of those with long-term conditions of working age are believed to be paying for theirprescriptions
For further information, please contact:
Phil Reynolds, Policy and Public Affairs Officer, Crohn’s and Colitis UK (lead organisation for the Prescription