What is PIP?
Personal Independence Payment (PIP) is a disability benefit for people aged 16 to state pension age. It has replaced Disability Living Allowance (DLA) for adults.
PIP is a cash payment aimed at covering the extra cost of having a disability or a long-term health condition. Although if you receive PIP, it’s up to you how you spend it.
PIP is not taxable and is not means-tested. This means you can still claim it if you have a job, other income or any savings. Claiming PIP also won’t change the amount you receive from other benefits.
The payment is awarded using a points-based system. You can be awarded PIP for a short period (up to two years) or a long period (five to 10 years).
Towards the end of your award period, you’ll be invited to undergo a review to see if your situation is still the same of has changed. This means your PIP award could change.
PIP has two components, with two different payment rates:
Daily living component
- standard rate
- enhanced rate
- standard rate
- enhanced rate
To be eligible for PIP you must:
- Have a health condition for three months before applying, and have the condition for a further nine months after applying
- Have been in the UK for two of the past three years
- Be aged between 16 and your state pension age. You can check your state pension age on GOV.UK
- There are exceptions and additional rules to the eligibility criteria if you have a terminal illness, if you live abroad or if you’re not a British Citizen
PIP is awarded based on how your condition affects you, not which condition you have. So having a muscle-wasting condition doesn’t guarantee that you’ll be eligible.
PIP is considered on a points-based system and rated how your condition affects you. The more support you need, the higher your points score will be.
- 8 points for the standard rate
- 12 points for the enhanced rate
You could qualify for the enhanced rate of both the daily living and mobility components. Or the enhanced rate of one and the standard of the other. Or not qualify for one component at all but still be eligible for the other.
Your needs are assessed on the level of help you need with the following areas, or ‘descriptors’
- Preparing food
- Taking nutrition
- Managing therapy or monitoring a health condition
- Washing and bathing
- Managing toilet needs or incontinence
- Dressing and undressing
- Communicating verbally
- Reading and understanding signs, symbols and words
- Engaging with people face to face
- Making budgeting decisions
- Planning and following journeys
- Moving around
When you are assessed, you will be given the score that fits best with your description of how your condition affects you. That is why it is important to give as much detail as possible on your application.
There are two different rates for each component of PIP. You may be able to receive one or both components.
Daily living component weekly rate
- Standard – £58.70
- Enhanced – £87.65
Mobility component weekly rate
- Standard – £23.20
- Enhanced – £61.20
The components will be added together to make a weekly rate, which is usually paid every four weeks in arrears directly into your chosen bank account.
The first steps to making an application is to call the DWP and request a PIP form. It’s usually quickest to phone, on 0800 917 2222, but you can also write or text the DWP.
Making a new claim to PIP: 0800 917 2222
General enquiry line for PIP (also for existing claims): 0800 121 4433
Find out more at www.gov.uk/pip
During the initial phone call, you’ll be asked for details including your full name, date of birth, national insurance number, bank details, address and contact information.
If you have difficulty providing this information over the phone, ask someone to call on your behalf. You’ll need to be present if someone else does this.
Following the call, you’ll be send the ‘How your disability affects you’ form. This is the PIP application form.
The beginning of the ‘How your disability affects you’ form collects some basic information about your muscle-wasting condition and your current treatments.
About your Medical Professionals
You’re asked to list the medical professionals involved in your clinical care. This could include (but don’t worry, it isn’t limited to):
- general practitioner (GP)
- consultant neurologist
- specialist nurse
- care advisor
- occupational therapist
- respiratory consultant
- speech and language therapist.
You may be able to get supporting evidence from one or more of your medical professionals. If you haven’t seen a medical professional in the last three months, try to make an appointment. This helps them to have a clear picture of how things stand with you and your condition, ensuring the most current information is provided.
About your health condition or disability
The next question asks you to outline your medical condition or disability. It’s helpful to give as much information as possible in your answer. You should also include medical evidence (such as a recent clinic letter) to support your diagnosis.
You can apply for PIP without a firm diagnosis. Many people with a muscle-wasting or associated condition may not have a specific diagnosis at first, as tests for these conditions can take time to complete.
Your neurologist may give you what’s called a ‘clinical diagnosis’, while genetic tests are carried out, however this may not always be possible.
In this scenario, you may be given a diagnosis of an ‘undiagnosed muscle-wasting condition’. You can state this diagnosis on your PIP form. In these cases, medical evidence is very important. It helps the DWP understand how your condition affects you.
The DWP will only assess the impact of your condition, not the condition itself. So it’s important to include information about how your condition affects you and explain what your condition is. Remember, the person reading your form may not have any experience or knowledge of muscle-wasting or associated conditions, so include as much detail as you can and think about how you would describe your condition to someone hearing about it for the very first time.
The daily living component looks at your ability to complete daily tasks to meet your basic human needs and live your everyday life. The DWP will score you based on how you are affected by your condition –not on the condition you have – and if your condition affects you on more than 50 percent of days.
Also, bear in mind how you might get along on a bad day.
Many, though not all, muscle-wasting conditions progress over time.
It’s possible that over time you may have made small adjustments and changes to your everyday routine. You might be carrying out this task in your own unique way to keep you safe and independent without actually seeing that your needs are changing.
So do think about any small changes you have made and add them to the form.
Make sure you take time to think about the adjustments you’ve made and how these actions differ from those of someone without a disability or health condition. Give clear examples of these adjustments and why you make them. Think about whether these adjustments mean that it takes longer for you to do things too.
How to answer the daily living questions
When thinking about answering the questions about each task, consider the below.
Any help you need from other people
- This includes whether other people complete this task for you, or if you need help with key aspects of it, (e.g. you can prepare some food but can’t cut root vegetables).
Any aids or equipment you use
- This includes aids you have been given (e.g.bath board, toilet-seat riser), smaller aids you have purchased yourself (e.g. larger-handed cutlery, lighter cups) and any common items you use as an aid to help you (e.g.sitting down on the bed to put on your socks, holding on to the sink in order to stand up after using the toilet). It also includes any medical equipment you have that helps you complete these tasks, such as a PEG feed or catheter.
How long it takes you
- Does it take you longer to complete this task because of how your condition affects you? Do you do the task more slowly? Or do you have to take regular breaks, meaning it takes you longer to complete the task?
Whether the task causes you discomfort during or after completing it
- Do you experience any pain, fatigue or other type of discomfort while completing a task, or afterwards? For example, if you need to rest for half an hour after showering or if you experience pain while dressing and undressing, because of your condition.
Whether you can complete these tasks as often as you need to
- Do you wash and bathe, or change your clothes less frequently because these tasks are difficult or take you a long time? Write all of this down on the form.
Whether you can complete these tasks ‘to an acceptable standard’
- Do symptoms of your condition mean you can’t complete these tasks to a level that someone without a condition might? For example, are you able to chop food, or wash and bathe, to the same standard as someone living without the same condition as you?
Whether you are at any risk
- Have you ever hurt yourself when completing these tasks? Have you had any ‘near misses’, such as your hand slipping when chopping or almost slipping in the kitchen?
Whether you need prompting
- Do you need someone to prompt you or remind you to complete certain tasks, such as reminding you to eat, take medication or use the toilet? If so, make sure you add this to your form.
Does your condition affect your ability to complete a task in one of the above ways? If the answer is yes then according to PIP guidance, you can’t be deemed to be able to complete the task ‘effectively’. So we would expect you to score points under the relevant questions in the form.
How many points you score depends on how much your condition affects you in these areas.
You should also think about:
- how often your condition affects you in this way (does it vary?)
- whether you need assistance but don’t currently receive it
- whether you need aids and equipment but don’t currently have them.
Remember, the DWP will score you based on how you are affected by your condition – not on the condition you have – and if your condition affects you on more than 50 percent of days.
A great way to figure out how often you need the most help is by starting a diary to track how your condition affects you day to day. Applicants have told us they find it makes them think of things they wouldn’t have usually written on the form.
The questions cover both physical and cognitive conditions. It may be that not every question will be relevant to you. It’s very normal to not score points under every question, so please don’t worry.
If you have another condition that is unrelated to your muscle-wasting condition, you may find it useful to contact a relevant health professional or a charity related to that condition.
The mobility component looks at how your mobility is affected by your condition. This includes your ability to walk, as well as your ability to plan and follow the route of a journey.
Your eligibility for the mobility component is based on just two questions:
- Planning and following journeys
- Moving around
Planning and following journeys assesses difficulty you experience or any help you need going out on your own. This question does not measure your physical ability to get around, but instead takes into account any psychological or developmental factors that make it difficult for you to plan and follow a route independently.
This can include severe anxiety, depression and learning disabilities. If you have any conditions of this description, it’s important to get evidence from a healthcare professional.
Moving around looks at your ability to stand and then move around. It’s a very important question for people with muscle-wasting and associated conditions, as the answers you give to this question are vital to assess your entitlement.
Supporting medical evidence is crucial to your application. It’s the strongest form of information you can provide to the DWP.
The content of a letter of support from your neurologist, for example, should never be disputed by the DWP.
Other types of evidence, such as a letter from your partner, parent or carer all help paint a picture of the impact your condition has on your life. A weekly diary, outlining all the help you need is also an excellent document to include.
There is a place on the form to write your medical professionals’ contact details. However, the DWP will only contact them if they feel they don’t have enough evidence to make a decision. So it’s important to send in your own evidence along with your claim. This helps them to make an informed decision and can prevent the process being delayed.
Below is a list of some of the health professionals who may be able to provide a supporting letter for your claim. You don’t need to contact them all, so think about the ones you feel know you best.
For example, a physiotherapist would be able to provide information about your walking, mobility and strength.
- Consultant neurologist
- Neuromuscular care advisor
- Nurse specialist
- Occupational therapist
- General practitioner (GP)
- Speech and language therapist
As soon as you begin the process of applying for PIP, let your chosen health professionals know so you can schedule an appointment with them.
It’s helpful to ensure you keep up-to-date with all your medical appointments so health professionals have a clear understanding of how your condition affects your everyday life.
Don’t rely solely on medical evidence. You know your condition better than anyone. If your condition fluctuates from day to day, it can be difficult to answer some of the questions on the form. Keeping a diary is a brilliant way of sharing how your condition can vary day to day. This gives you an opportunity to highlight different challenges the form may not ask you about.
You can also get a letter or statement from a friend, carer or relative.
At MDUK, we have an advocacy team who are more than happy to assist with applications and provide information concerning your condition.
Now that you have completed the ‘How your disability affects you’ form to the best of your ability, you will need to send this in to the DWP. Be sure to include any supporting evidence with your application.
Before you post off your application, check that you have enclosed the following:
- full and completed application form
- medical evidence
- any additional supporting letters
- diary of condition
- condition factsheet (available from MDUK)
Before you send it off, take photocopies or photos of your completed form, as well as all your supporting evidence. It’s best to avoid sending originals where you can.
We would advise sending the form recorded delivery. Where this isn’t possible, ask for receipt for proof of postage.
After around a week or so, if you haven’t heard anything, give the DWP a quick call to ensure they have received it.
Once the DWP has confirmed that your application has been received, there is nothing more for you to do but wait to receive correspondence from the DWP either inviting you to a face-to-face assessment or informing you of a decision.
Not everyone will be called to an assessment. Sometimes decisions are made on the strength of the completed application form.
You may be invited to a face-to-face assessment.
This is a standard part of the PIP process, and it’s expected that most PIP applicants will be invited to attend a face-to-face assessment (even if you have been receiving DLA previously).
The assessor will have a medical/nursing or allied health background but this doesn’t mean they are familiar with your condition. It can be helpful for them to hear about your condition directly from you. You could also give the assessor one of our condition factsheets.
You can get in touch with our support team on 0800 652 6352 for further information.
Speak as openly and clearly as you feel able. There is no rush.
Information required for the face-to-face assessment
The final section of the form offers an opportunity to mention any additional needs you have in relation to this. Here you would share any access requirements you may have, such as:
- level access
- Blue Badge parking
- ground floor room
- access to toilets
- interpreter/sign language interpreter.
Home assessments and audio recordings
Home assessments are carried out on a case-by case basis.
You can ask to audio record your assessment if you wish. If you require this, you should state it on the form and also liaise with the assessment centre before your appointment.
There are usually a number of rules that will need to be adhered to in order to audio record the assessment.
Typically, there are only specific types of recording equipment that can be used and you would need to provide a copy of the recording at the end of the assessment. Please speak to the assessment centre as far in advance as possible to avoid any challenges on the day.
The questions you can be asked at the assessment may vary from the form. Generally, the assessment will cover a mixture of questions from the form itself and questions not on the form. Don’t be alarmed at this. It’s to expand a bit more on the impact your condition has on you, day to day. It’s simply to determine your eligibility under all the descriptors.
The way you communicate and answer the questions will also be noted along with assessing how you are generally in the assessment.
The assessor may ask you questions about your everyday life. This could cover the following activities:
- looking after pets
- visiting friends
- using a computer.
Many people are able to complete all the activities listed and are still entitled to receive PIP, so don’t let this worry you. None of these questions is designed to ‘catch you out’. They offer you an opportunity to share what support you may need.
When answering the questions, try and keep in mind some of the questions we’ve mentioned on this page: what do you find difficult and why? Can you complete these tasks alone? Can you complete them within a ‘reasonable time frame’?
Think about any aids you may need too, including mobility aids, adaptations or assistance from another person.
Below are a few suggestions:
- wheelchair accessible vehicle (or adapted vehicle)
- automatic vehicle
- any mobility aid
- any assistance through Access to Work or your employer
- assistive technology (environmental controls and communication devices)
- relying on online shops
- dog walker
You should receive a decision by letter shortly after your assessment. The letter will tell you whether you have been awarded PIP payments, what rate the award is and how long the award will last.
Included in the decision letter will be a breakdown of the points you scored under each descriptor, and a short written explanation of how the decision was made.
The assessor doesn’t make the decision on your PIP entitlement. They file the report and a DWP decision-maker decides the outcome.
Although your assessor doesn’t make the final decision, their report plays a vital part in the outcome.
You can request a copy of the assessor’s report from the PIP customer service helpline if you want to read it.
Can I make a complaint if I’m unhappy with how my claim was handled?
If you feel your claim has been handled inappropriately, you can file a complaint.
This can be done alongside appealing your rate of allowance. Even if you’re content with the award rates, but were unhappy with the process, you can make a complaint.
Initially, contact the PIP enquiry line and share your concerns.
If you’re unsatisfied with their response, ask for your complaint to be looked at by a Complaint Resolution Manager. This can take around 15 working days. If you still feel the complaint has not been resolved, the case can be taken to an Independent Case Examiner for investigation. This is impartial and free.
The process for challenging a decision starts with a mandatory reconsideration. It might then be followed by an appear and an independent tribunal hearing:
- Initial application
- Mandatory reconsideration – must send within hearing one month of receiving decision letter
- Mandatory reconsideration notice
- Request appeal – must send within one month of receiving mandatory reconsideration notice
- Independent tribunal hearing
If you do not agree with a decision, you can ask the DWP to look at this decision again. This is the first step in the process and is called ‘mandatory reconsideration’. A mandatory reconsideration request needs to be made within one calendar month of the date on the decision letter.
If you have missed the one-month deadline, it’s still possible to ask the DWP for a mandatory reconsideration. You would be expected to demonstrate the reasons for submitting a late request. However, the DWP can refuse your request if submitted late.
Reasons to ask for a mandatory reconsideration would be:
- if you think that the level of benefit you have been awarded is incorrect (an example of this would be that you have been awarded the standard rate for the mobility component and you think you should be receiving the enhanced rate)
- if you disagree with the length of the award and feel it should be for a longer period.
Please be aware that the DWP will look at your whole application again. This could go in your favour, but they also have the right to remove any rate of PIP that you were awarded in the DWP’s initial decision.
Requesting your mandatory reconsideration
You need to write to the address or call the number outlined at the end of your decision letter. Calling is usually a quicker, more effective approach to get the process underway. When you call, do the following:
- request a mandatory reconsideration of the decision, and explain why you feel the decision is wrong. Keep it simple at this stage. An example of this would be that the decision does not acknowledge the extent of the support you require.
- ask them to send you copies of their documents so you can review them. This will include the assessor report.
- ask them for a deadline by which you can then send in additional evidence, and tell them they should not proceed with the reconsideration until they have received this evidence.
If you request the mandatory reconsideration in writing, make sure to keep a copy of the letter and proof of postage (sending recorded delivery where possible).
If you request the mandatory reconsideration by phone, take the full name of the person you spoke to and the date and time. We advise also following this up in writing.
You should hear from the DWP within a couple of weeks. If you haven’t, give them a call.
When you get the reports, they’ll give you a wider understanding of why a decision has been made. There will normally be two parts to their documents: a copy of your form and the face-to-face assessment report.
Once you have both of these in front of you, take a look at them side by side. Read the report in detail and see if any information about your condition has been missed or misunderstood.
Highlight these differences in your letter. Also try to get medical evidence to back up your claims. When you have gathered the evidence, make copies for your records and then send it to the DWP.
You can let the DWP know if you need additional time to collect evidence, especially if you are awaiting medical evidence.
Once all the information has been received, a case manager at the DWP will look at the original decision along with any new evidence. A decision will be made based on this.
The DWP will then write to you informing you of the outcome. This letter is called a ‘mandatory reconsideration notice’. Keep this letter in a safe place, as you will need it if you choose to appeal to a tribunal.
You must have been through the mandatory reconsideration process before you can appeal to an independent tribunal.
If you feel the mandatory reconsideration decision isn’t correct, the next stage is to take the case to an independent tribunal. An appeal needs to be made within one calendar month of the date on the mandatory reconsideration decision letter. If you have missed the one-month deadline, it’s still possible to appeal the DWP’s decision. The tribunal service will review your appeal submission and make a decision on whether your appeal can go ahead. You would be expected to demonstrate the reasons for submitting a late request.
Her Majesty’s Courts and Tribunal Service (HMCTS) review appeals. This service is independent of the DWP. Any information must be submitted directly to the HMCTS.
Details will be on your mandatory reconsideration notice.
You can download a copy of the SSCS1 appeal form from the government website (England, Scotland and Wales only).
Alternatively, call your local HMCTS and ask for an appeal form to be sent to you by post.
In Northern Ireland, you can download the appeal form NOA1(SS) from the government website for Northern Ireland.
The forms will ask for your name, address and, if you have one, details of your chosen representative.
Your representative is someone who can speak about your condition at the tribunal. You do not have to have a representative. It may be that you are representing yourself. If this is the case you can bring along a friend or relative to support you.
There is a section where you can share why you feel you have grounds to appeal. You’ll be asked the decision date, name of benefit and the outcome. This information can all be found on your mandatory reconsideration notice.
The next section will ask you to state why you feel the decision is incorrect. Explain in your own words why you feel the decision is wrong.
If possible, link back to any medical evidence you have provided to the DWP. For example: ‘the report stated I could chop vegetables but my consultant letter stated I have a very weak grip and am unable to hold a knife safely’.
You will be asked if you wish to attend the hearing. There is no pressure to attend and it is completely down to you, but it can be helpful for the tribunal panel if you do go along. If you choose not to or are unable to attend the tribunal, a decision will be made using the evidence you submit.
Make a copy of the form and return it to HMCTS at the address on the form. A copy of the mandatory reconsideration notice also needs to be included.
Once the tribunal service or HMCTS has received the form, you’ll receive an acknowledgement in the post. HMCTS will then send a letter to DWP informing them of your appeal.
The DWP will write to the HMCTS outlining why they made the decision they did. This will include your original application form and their assessment report. A copy will also be sent to you and, if you have one, your representative.
Your local MP may be able to offer you support, so do let them know your situation and why you are appealing. You can find your MP on the Parliament website.
Waiting for the hearing
It can take some time to have your appeal heard. We know this wait can be stressful for many people. The length of time depends on where you live and how busy your local service is.
It’s important that you let HMCTS know of any upcoming appointments or holidays you have booked. It can be quite time-consuming to get an appeal date moved so it’s good to avoid this if you can.
While you’re waiting for your hearing date to come through, think about any additional people you could approach who could provide additional evidence. You can send information through up until two weeks before the hearing date.
If you have opted to attend the hearing you will receive a date in the post. Don’t worry; the independent tribunal is not like attending a formal court. The venue should be accessible and the clerk of the court will be there to assist you.
If you need support from a carer or family member, they can also attend the tribunal hearing. Please ensure that you arrive promptly and allow additional time to pass through security.
You can bring notes to help you remember everything. It can be helpful to read through the information and highlight key things you want to ensure you get across in the hearing.
The tribunal panel is usually made up of three independent people. A solicitor will lead the tribunal. There will be a person with a medical background and a lay person who has some experience of disability. All will introduce themselves to you and your representative.
The DWP can send a presenting officer to put forward their position and challenge the points that you have made in the appeal document. This is standard practice and should not be anything to worry about.
The panel will then ask a series of questions based on what you have put on your form and any additional supporting information you have provided them with. Take your time and don’t feel rushed – this is your chance to explain to them how your condition affects you. If you need to pause or take a moment for a drink of water, this is perfectly acceptable.
If a DWP presenting officer is there, they will have an opportunity to ask you a few questions. If you have chosen to have a representative, they will also have an opportunity to raise anything they feel may have been missed and challenge any points made by the DWP.
You’ll be then be asked to leave the room for the tribunal panel to discuss your case. You’ll either be informed that day of their decision or very soon after your hearing. You’ll receive a copy of the decision notice and a copy will be sent to the DWP.
If the outcome is in your favour, then the DWP will make the necessary changes and you’ll start to receive your award. Within a few weeks of the decision being changed, you’ll also receive any back payment, backdated from the date you made the claim.
If your appeal is unsuccessful, you can request (in writing) a detailed explanation of why this is.