Posts

Disabled Student Allowance (DSA) and Disability Support in university

As you may know, I am going to university this year at the grand age of 39. If it wasn’t scary enough to be heading into education as Im hitting 40, doing it with a chronic illness is even more terrifying. A friend told me about Disability Student Allowance (DSA) and also about the Disability support team at universities. These things have made the world of difference and so I thought I would write about it today.

DSA

Disabled Students’ Allowance (DSA) is there to cover some of the extra costs you have because of a mental health problem, long term illness or any other disability. There are three parts to it; specialist equipment allowance, non-medical helper allowance and general allowance.

You can get help with the costs of:

  • specialist equipment, for example a computer if you need one because of your disability
  • non-medical helpers
  • extra travel because of your disability
  • other disability-related costs of studying

You may get a new computer if you do not already have one, or your current one does not meet your study needs. More information will be provided to you if you’re assessed as needing a new computer. You’ll need to pay the first £200, which is the minimum cost that any student is likely to incur when buying a computer. DSAs do not cover disability-related costs you’d have if you were not attending a course, or costs that any student might have.

Man and woman wearing Sheffield Hallam uni jumpers

How to apply

You can apply for Disabled Students’ Allowances (DSA) if you live in England and have a disability that affects your ability to study, such as a:

  • specific learning difficulty, for example dyslexia or ADHD
  • mental health condition, for example anxiety or depression
  • physical disability, for example if you have to use crutches, a wheelchair or a special keyboard
  • sensory disability, for example if you’re visually impaired, deaf or have a hearing impairment
  • long-term health condition, for example cancer, chronic heart disease or HIV

You must also:

  • be an undergraduate or postgraduate student (including Open University or distance learning)
  • qualify for student finance from Student Finance England
  • be studying on a course that lasts at least a year

You can find more information on the government website here.

You apply through Student Finance where you are led through the assessment and application process. You’ll need to prove your disability through a letter from your doctor or medical team and other medical reports. I used a letter from my consultant that he had made for my PIP application as well as a copy of my surgical history and letters showing my need for further tests and consultation.

UCAS

UCAS have a whole host of information about being a disabled student here. Read through and also contact the university that you are planning to attend to meet their disability support team. Once I had a confirmed place, I contacted the team and arranged a telephone meeting where we went through my illness and how it effects me. I applied for DSA through student finance and sent them all my evidence and once they confirmed I was eligible, I arranged a needs assessment with an assessment centre, there is a fee for this, but it is paid for from your DSA. Don’t book this until asked to by Student Finance England.

After the assessment, you’ll get a report listing equipment and other support you can get for your course. This was a two way conversation with a trained assessor. I was nervous about this, it was done over the phone, but the assessor was brilliant. He put me at ease and was knowledgable about disability. We talked through each section and how things may effect me and what they could put in place.

What you can get

If you need a non medical helper to get you through your course, they can arrange and pay for this. This wasn’t necessary for me. We talked about what equipment I currently had such as laptop and printer and I said I was happy with the ones I had, but they suggested equipment like a laptop tray for bed so if I was struggling, I could still work from my bedroom. Also a microphone to record lectures and a headset and headphones.

I also received software for my computer that may help in my studies, this included mind map software and a recording software that allows me to use recorded lectures or my own voice notes.

With the Disability Support team at the uni, we had another phone call where we created a Learning Contract. A Learning Contract is a document that:

  • recommends reasonable adjustments so that you are not disadvantaged by your condition
  • gives relevant staff the information they need to support you

So for example, my learning contract includes things like;

  • I may need to get up and leave the classroom without warning and may not return
  • Getting up and move around and stretch during classes
  • Needing longer library book loan times
  • Not lifting heavy items
  • Missing classes
  • Extensions

It basically gives me the confidence to know that my tutors have an understanding about my condition and can support me in any additional needs I may have. I also applied for a Parking Permit for the university and can get much reduced taxi fares if my health means I cannot drive or get public transport.

Crohns and Colitis UK

Crohns and Colitis UK have a great guide for students with Crohns or Colitis heading to uni, you can find it here. They say:

You may not see yourself as having a disability, but having Crohn’s or Colitis may mean you have needs other students do not, and that you might benefit from some of the support offered in this way. All Higher Education (HE) institutions should have a Student Disability Services department or team, (although the exact name may be slightly different). Details of how to contact them will be on the university or college website. The site may also give information about the types of provision available.

For a student with a chronic medical condition, such as Crohn’s or Colitis, ‘reasonable adjustments’ might include, for example, arrangements for extra time in exams or extensions to meet coursework deadlines when fatigue or other symptoms are a problem. It might also include arrangements to allow you to eat or take medication during teaching sessions.

Crohns and Colitis UK – Students with IBD

Daunting

I know all this can feel really daunting, and it is quite a lot of admin and takes time and head space. But if you are a student, you are entitled to support to make your experience as easy as possible. You shouldn’t be at a disadvantage because of your illness or disability.

For me, just knowing that my tutors will already have this knowledge about me and I won’t have to stand and explain myself constantly is such a relief. Of course I will keep an open line of communication with them throughout, but I want to be able to start my course without being frightened of being embarrassed by explaining myself in front of others.

Both the DSA assessor and the disabled support team at my university were so gentle, understanding and supportive. They made the whole experience so much easier and had so much knowledge. As the telephone assessment was around 2 hours long, the assessor kept asking me if I was ok or if I needed a break. It has all been dealt with with care and dignity.

This is just my personal experience with some great links thrown in, I hope it helps. If you are interested in finding out more, speak to your university and they will be able to help.

Peace and love

Sam xx

Carers Week 2020

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

Carers Week

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

Husband, wife and adult son

Carers Allowance

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

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

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

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

No support

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

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

Activist and carer Dan White said this:

Young Carers

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

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

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

Practical and emotional support

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

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

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

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

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

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

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

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

Corona

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

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

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

Campaigns

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

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

What else can you do?

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

Thanks for reading

Peace and love

Sam xx

On BBC Breakfast talking about Blue Badges

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

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

sam cleasby at bbc breakfast blue badges invisible disability

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

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

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

Take a look here

 

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

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

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

 

Sam xx

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