Navigating Disability Benefits – Hints, Tips and Information Resources | 07 August 2019

August 7, 2019

Russell Fleming and Ann Innes, ME Association.

When you have a chronic illness, one of the most draining aspects of management can be dealing with necessary administration and organising your own support.

The DWP benefits system in the UK is no exception, and for many people with M.E., the process can seem incredibly daunting and quite overwhelming.

As a charity, when we post about benefits, we are often flooded with queries and requests for help. And whilst this is very telling of how ill-fitting the current system can be, unfortunately we are simply unable to offer an individual consultation service.

Applying for benefits and enduring the process can provoke feelings of anxiety

However, we’ve invested our limited resources into producing information with the help of Welfare Rights Adviser, Ann Innes, that provides relevant support to those who need it.

As well as providing some hints and tips and sharing our own leaflets and guides, we’ll be using this blog to signpost to various other resources and organisations which may be helpful at each stage of the benefit process.

We hope that in doing so, you will be able to use this page as a future reference, should you feel the need for additional support during your applications and reassessments.

Above all else, do remember that help is out there. Applying for benefits and enduring the process can provoke feelings of anxiety and it can be very time- and energy-demanding.

There remain many things about the system that are unfair but for those who are fortunate enough to make a successful application, benefits can prove to be a lifeline.

We have recently been consulting with the Minister and DWP team-members to inform them of the barriers people with M.E. still face in accessing the support to which they are entitled.

ME Connect Helpline: 0344 576 5326, available 365 days a year

And we continue to collect examples where the rules relating to ‘fluctuating’ and ‘reliably’ have not been appropriately considered by the DWP and cognitive issues have been ignored.

These case studies are being sent to the Minister for Disabled People, Health and Work by the Countess of Mar.

In the meantime, know that you’re not alone. If you’d like to talk to somebody who can empathise and assist with the information available, our ME Connect Helpline is here for you.

It is staffed by professional volunteers with experience of M.E. and is available 365 days a year.

Prepare as thoroughly as you can, make use of the ME Association’s resources, lean on family and friends for support, and do your best. We’ll all keep our fingers crossed that you get the outcome you deserve.


In the sections below, we consider Universal Credit, Employment & Support Allowance and Personal Independence Payment, provide some hints and tips and direct you to resources from the ME Association and elsewhere, to hopefully ensure a more successful outcome for your efforts.

Click the links immediately below to jump to each section.

The Application Stage

Hints and Tips

The Medical Assessment

The Mandatory Reconsideration

The Tribunal Appeal

The benefits process can be overwhelming. Don't be afraid to ask for help from someone who knows you well or from a professional adviser.

The Application Stage

Universal Credit (UC) and Employment & Support Allowance

If you are unable to work because of M.E. and you are under state pension age, you may be eligible for either UC (dependent on whether you and your partner are on a low enough income with savings under £16,000) or the New Style ESA (dependent upon your national insurance contributions).

  • The ME Association has produced a leaflet that explains the complexities of UC and we have a guide to completing the UC and ESA application forms with M.E. very much in mind.
  • These two benefits are known as are called “earnings replacement” benefits, and they aim to compensate for the fact you are unable to work.
  • An application for UC can only be made online whereas ESA is a paper-based application made via the post.

Personal Independence Payment (PIP)

If you are under 65 and your condition affects your mobility or your ability to manage personal care e.g. washing, dressing, preparing meals from fresh ingredients, etc., you may be eligible to claim PIP. 

If you are over 65 and have frequent difficulties with personal care needs throughout the day or night you may be able to claim Attendance Allowance.

  • The ME Association has a guide to completing the PIP application with examples relevant to someone with M.E.
  • Jo Moss has also written a blog post about completing the PIP application from the perspective of someone with Severe M.E.
  • Citizens Advice have a good website page that breaks down the PIP form into individual sections. 
  • PIP is not based on your national insurance contributions and is not a means-tested benefit which means it doesn't matter how much savings you have or if you are in employment or have other forms of income.
  • Once you have made your application for PIP you will receive a form to fill in about how your disability affects you.

Additional Help

  • The eligibility criteria for UC, ESA, and PIP are quite detailed so it might be advisable to get a benefits check from a welfare rights service to see what you may be entitled to claim.
  • The Government website explains the criteria for each benefit in more detail as well as how to claim and it includes a benefits calculator.
  • Citizens Advice offer a Help To Claim service for UC, where you can also speak to an adviser on the phone, over web-chat and arrange a face-to-face appointment.
  • Citizens Advice also has online guidance on completing the ESA application, as it relates to work capability.
  • The website pipinfo offers guidance on the correct interpretation of the law around PIP assessments, together with case law.
  • And, the Benefits and Work website also has a very good guide to filling in the PIP form, but this is a subscription based service and requires an annual fee.
PIP is made up of two components: the ‘daily living component' and the ‘mobility component'. Each has two rates: standard and enhanced. If you qualify for PIP you will get money for one or both components.

Hints and Tips

If you have severe or very severe M.E. the above guides and information sources may be beyond your ability to read or comprehend, and you may be reliant upon your primary carer to make the application on your behalf.

Don't ever be afraid to ask for help from someone you know or to find a local welfare rights service in your area. If you can then plan carefully in advance and seek a deadline extension if possible.

Ann Innes, the ME Association’s Welfare Rights Adviser, offers a private fee-based service independent of the MEA.
She can support people with M.E. through the claims process, from application, form completion, preparing for the face-to-face assessment and attending as an advocate, all the way through to mandatory reconsideration and representation at appeal. 
For more information, please contact Ann Innes direct: Phone: 07535 270985 Email: or c/o Stockport M.E. Group, 26 Turncliff Crescent, Stockport, SK6 6JP
  • There are also plenty of free services available that may be able to help, such as your local Citizens Advice service, local authority welfare rights service, law centre, local disability rights charities, impairment specific charities such as MIND if you have co-existing anxiety or depression, or charities like Age UK if you are over a certain age (age criteria varies depending on your locality). 
  • UC is an online application only. For ESA and PIP, you need to return the application application and medical evidence via the post. It is a very good idea to keep a copy of all paperwork including your application because you may need to refer to it later.
  • The most important thing to remember when completing your application form is to give details of how your symptoms and abilities can fluctuate throughout the day as well as over the course of the week.
  • For PIP, if you cannot do a particular task at any given point in a day, you should be assessed as being unable to do that descriptor for the entire day. For example, if you have to pick your time of day to hold a conversation, have a shower or deal with budgeting decisions when your symptoms are less troublesome, this would be highly relevant to state on your form.
  • Do not complete the applications as if it were your worst possible day, as you will be seen as an unreliable witness if you then happen to have your medical assessment on a relatively good day. 
  • The ESA or PIP application will be reviewed by a health professional contracted by the DWP who will decide whether or not you need a face-to-face medical assessment.
  • It is a good idea to seek medical evidence relevant to the tasks being assessed, as although the DWP can request evidence from the medical professional or social worker you indicate on the form, they don’t always do it. 
  • The ME Association have a proforma for ESA and PIP within the application guides (see above) that you can ask your GP etc. to complete. 
  • You should try and obtain recent medical evidence. If you feel it accurately details your level of difficulty, you should photocopy it, write your name and National Insurance number on the top of each page and submit it with your application.
  • If you can’t get it back within the deadline, send it in afterwards with a covering note, explaining it is further supporting evidence for your claim.
  • In most cases, particularly for PIP, you will be invited to a face-to-face assessment at an assessment centre.  It is also possible to arrange for a home assessment (see below). With ESA, if you have provided detailed medical evidence relevant to the tasks being assessed, your case may be decided without one. 
Try to obtain recent medical evidence and submit it at the time of your application. You can't always rely on the DWP obtaining it from your doctor.

The Medical Assessment

  • The ME Association guide to ESA has a good section about preparing for your medical assessment.
  • It can be a good idea to take someone with you to the assessment who knows your condition well.
  • The disability charity Scope has a range of resources and short informational videos on preparing for an assessment. These include tips, reasonable adjustments and claiming back travel costs.
  • Citizens Advice also have a downloadable help sheet on their website which you can fill in and take with you. This can help combat any brain fog and ensure your needs are heard. However, bear in mind that if you have written on your application that you have difficulties with reading and you are seen to be reading or even handling papers during your assessment, you are unlikely to score points for the reading task.
  • Bear in mind that you are only allowed to change your assessment date once, with prior notice. If you cannot attend on the day you will need to show “good cause”. What is considered “good cause” is down to the DWP’s discretion, so if you think there is a possibility you might not be able to attend because of your degree of impairment, you should consider asking for a home assessment.
  • If you feel you should be entitled to a home assessment, then inform the provider using the number on your appointment letter. You have more chance of getting a home assessment if your medical evidence that you submit with your form states that you need one. If you ask for an adjustment and it’s not made, this could sometimes be considered discrimination – contact your local Citizens Advice for more help in this regard. 
  • Claimants may face a long wait between sending off their application and receiving an assessment. If you have a change in circumstances during this time e.g. your health significantly deteriorates, it may be wise to inform the DWP. Again, Citizens Advice have information online for doing so. However, anecdotally some disabled people have faced administrative issues when attempting to register a change in circumstances that have delayed the process or adversely affected their chances, so it’s important to think carefully about taking this course of action.
  • You can ask for your assessment to be recorded and this is often a good idea. For PIP you have to supply 2 identical recording devices that record onto CD or tape. You must make this request over the telephone to the assessment provider as soon as you get your appointment through and at least 3 working days before the assessment for PIP. 
Home assessments are sometimes possible depending on availability. It can be worth requesting one especially if you are unable to travel due to disability.

The Mandatory Reconsideration

If you are not happy with the outcome of your assessment or the decision the DWP has made, you can ask for a mandatory reconsideration, whereby the decision is looked at again, usually (but not always) by a different decision maker. 

  • They will look at the whole decision again, not just the bit you disagree with, so it is advisable to seek advice from a welfare rights adviser before deciding whether to ask for a mandatory reconsideration as you could risk losing what you have been awarded if your case isn’t strong.
  • You only have one calendar month from the date on the decision letter to ask for a mandatory reconsideration. And it is a good idea to request a copy of your assessment report to see if the assessment was accurate and what, if anything, you dispute.
  • If you decide to proceed will benefit from additional support.
  • The ME Association has produced a guide to mandatory reconsiderations and appeals that is relevant to both ESA and PIP.
  • And, Advicelocal has a search tool on their website to help you identify local support outlets near you who may be able to provide practical help.
  • Once you have lodged your request with the DWP, you will receive a mandatory reconsideration notice, explaining what the new decision is and why. 
  • If you still disagree, you again have only one calendar month to lodge an appeal with Her Majesty’s Courts and Tribunals Service.

The Tribunal Appeal

If you decide to proceed to appeal, the reconsideration decision will be reviewed by a tribunal panel consisting of a judge, doctor and, in the case of PIP, a disability expert, who are independent of the DWP. 

  • The panel will look at the whole decision, not just the bit you disagree with, so it is advisable to seek advice from a welfare rights adviser before deciding whether to appeal as you could risk losing what you have been awarded if your case isn’t a strong one. 
  • The waiting time for an appeal varies according to your location, but there are often very long periods between requesting an appeal and the date of your hearing, sometimes up to a year.
  • To find out the waiting time in your area, call the number detailed on your previous letters and correspondence. If appropriate and suitable for your condition, you may like to express an interest in short-notice appointments, should there be any cancellations in the near future. However, this depends on your ability to attend appointments with little notice, which could be a significant barrier for people with M.E. who need to plan and pace themselves, and also a barrier for the person representing you to be able to attend, if you have a representative.  
  • It is a good idea to have a representative who is a welfare rights adviser at appeal, as they should know how the law is interpreted and will be able to spot any procedural errors in the tribunal that could be used to challenge an unfavourable decision. 
  • However, a representative cannot speak on your behalf. They can make written and verbal submissions and ask you questions where they think further evidence might be useful.
  • Attending an appeal in person gives a higher chance of success than asking for a hearing based solely on your paperwork. However, if you have severe M.E. and are housebound you may be able to request a telephone or Skype hearing.
  • The ME Association has produced a guide to mandatory reconsiderations and appeals that is relevant to both ESA and PIP.
  • Information on the Scope website outlines what happens at a tribunal, and what to expect.
  • Scope’s online community is also a great forum for connecting with others who are going through the process, and to ask any questions which may not have been covered on existing resources.
  • And, Benefits and Work also have a detailed guide about Appeals available to their members – it is a fee-paying service.

Image credits: 123RF/Katarzyna Białasiewicz/Marina Pokupcic/Ian Allenden/daraanja.

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

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