EB disability benefits

Benefits calculators are free to use and anonymous and can help you find out the following:

• what benefits you could get.
• how to claim.
• how your benefits might change if you start work.

Before you start, we would recommend that you have all the financial information you might need to be able to complete the assessment including your income, details of any existing benefits, and an overview of any current savings.

For more information and to access the benefits calculators recommended by the UK government, please visit the benefits calculators page on the GOV.UK website.

If you live in Northern Ireland, please visit the nidirect guidance on benefits calculators.

PIP is a benefit which replaced the Disability Living Allowance (DLA) for any adults (over 16s) making new claims.

Adults already on DLA will be asked to claim PIP instead of DLA even those with an award for ‘life’ or an ‘indefinite’ award. If you are invited to claim PIP and choose not to, your DLA will end.

As with the DLA, the PIP allowance is formed of two components:

• the daily living component helps cover the additional costs of everyday tasks.
• the mobility component helps cover the additional costs of getting around.

Each component has a standard rate and an enhanced rate for people more severely impacted by their specific condition. Depending on the severity of EB, you/the person you are caring for, may be eligible for both components, just one, or neither, but please don’t be discouraged from applying for PIP as it is dependent on how EB affects you personally not on EB has a general condition.

The application process for PIP will require you to write about your EB or how EB affects the person you care for and will take the form of a questionnaire, but it can also often include a face-to-face assessment. The DEBRA EB Community Support Team is here to support you with your application.

Before applying for PIP, we would recommend that you check the eligibility criteria on the DWP website.

The first stage of the application for PIP is either a telephone call with the DWP, or you can start your claim by post, but this takes longer. If you request a PIP paper form by telephone, then your claim will start from the date you make the phone call.

Contact details for telephone and postal applications including options for people who cannot speak or hear on the phone can be found here.

For this first stage you will need to provide the DWP with the following information:

• Your personal details including name, address, telephone number, national insurance number, nationality, or immigration status.
• Details of your current health condition and disability. It is worth specifying which type of EB you have so the DWP are aware of your exact condition and send the form.
• Details of any time spent in a hospital, residential care home, or hospice.
• Details of any time spent outside of the country.
• Your payment (bank account) details.

Following the first stage you will receive in the post either a ‘how my disability affects me’ form (PIP2) to complete or a letter explaining why you do not qualify for PIP.

If you have been told you do not apply qualify for PIP, that is not necessarily the end of the process, you may be able to start a new claim. Please contact your DEBRA EB Community Support Manager who will be able to advise.

If you are successful at the first stage you will receive the PIP2 form ‘how my disability affects me’, this is your opportunity to describe how EB affects your daily living.

Citizens Advice have created this guidance to help you fill in your PIP application form.

Our EB Community Support Team has also pulled together some handy tips to support you in completing the PIP2 form.

• Explain how your EB affects you in as much detail as possible, think about the bad days vs. the good days, and give examples of how EB impacts your daily activities the most on your bad days.
• Consider how (and what) treatments or support could help improve your quality of life, remember you don’t have to already be receiving support.
• Explain how you struggle to manage daily activities, e.g., which activities do you struggle to do safely, well enough, or repeatedly, and in a reasonable amount of time?
• Keep a diary that covers good and bad days to use as evidence of how EB impacts your daily life on the bad days, and timestamp the key milestones in your day that are impacted by EB, e.g., getting pain relief and the waiting time for it to take effect, length of time taken for treatments, impact from daily activities including washing, eating, walking etc.
• Compile a list of your medications, dressings, creams, home remedies and other treatments, including over the counter pain relief and medicines you cannot take (e.g., due to adverse side effects) but have been prescribed.
• Ask your EB healthcare team (and other health professionals involved in your care) if they can provide a supporting letter. Alternatively, you could send copies of any recent medical letters containing details such as recent assessments, hospital visits, write-ups from specialist appointments, or a diagnosis letter.
• For help with the PIP2 definitions please click here.
• Don’t worry if you think you are repeating yourself, all the information you provide is important and will help the assessor to fully understand your situation.
• Include your name and National Insurance number on each additional sheet you use.

Once you have completed and submitted your PIP2 form and supporting evidence, the information will be reviewed by a health professional.

In some cases, there may be enough information to make an official assessment, in most cases though you will be invited to either a telephone or face to face consultation for which you can be accompanied by a family member, friend, social worker, or anyone you feel can provide support and assist you. It is really helpful to read through your copy of the PIP2 form before this consultation, to refresh what information is included as the assessor may want you to expand on what is written on the form.

The healthcare professional will ask you questions about your living circumstances, your EB, and how it affects your daily life. They will review all the evidence gathered against a set of everyday activities to assess the challenges that you face. They will then compile a report for the DWP where a decision maker will then decide whether you’re entitled to PIP, at what rate, and for how long.

For more information on the PIP assessment please read the DWP guide.

You will be informed of the PIP decision by post with a letter providing information about the decision and how it has been reached.

Positive outcome

If you are successful, your letter will tell you which component of PIP you have been awarded, the rate(s) you will receive, for how long, and when you should expect to receive payment.

PIP can be awarded for a short time (1-2 years) or longer (5-10 years) and you will only receive PIP indefinitely if you receive PIP for both components and the assessor considers your condition unlikely to change in the future. All cases will be periodically reviewed to make sure you receive the most appropriate level of support and there is a possibility that your allowance for one or both components could increase or decrease with each review.

Negative outcome

If you feel you are not receiving the correct rate of PIP allowance or if your application was declined, you are entitled to ask for a reconsideration of the decision before entering the appeals process. However, you must request this reconsideration within one month of the date of the decision letter. Reconsiderations are more likely to succeed if you can provide medical evidence to support your case – a supporting letter from your EB specialist team is helpful at this stage.

For more information on how to challenge a benefit decision including PIP please visit the GOV.UK website. Please contact our EB Community Support Team as well if you need any further help, as we can support you in requesting a reconsideration.

The process to challenge a benefit decision for people living in Scotland is different. For more information please visit the mygov.scot website.

If you still do not agree with the decision after a reconsideration, you will be given an opportunity to appeal. The deadline to submit an appeal is again within one month of the date of the outcome letter.

To submit an appeal you will need to complete form SSCS1, which you can download here.

The DEBRA EB Community Support Team is here to help you through the process of challenging a benefit decision or submitting an appeal. You can also find more information about challenging a PIP decision on the Citizens Advice website.

To enable people who are terminally ill to receive support more quickly there are simplified rules. If this applies to you or the person you care for, you do not have to meet the qualifying period for the daily living and/or mobility test, nor be normally resident in the UK (but you should be resident at the time of claiming).

Terminally ill applicants should complete a Special Rules SR1 form which has replaced the DS1500 form.

To find out more about the Special Rules application please visit the GOV.UK website.