Accessibility of the Personal Independence Payment (PIP) Process for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S)

Merry Christmas and welcome to our last blog of 2023!

We have always known that applying for Personal Independence Payment is difficult for people living with many different disabilities for a range of reasons, including the toxic culture that exists within the Department for Work and Pensions when it comes to ‘disability benefits’. However, the inaccessibility of the process came much closer to home in November 2023 when our own Managing Director, Sally Callow started the process herself.

To be clear, Sally has been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 2006, ‘identifies’ as disabled (M.E./C.F.S IS a disability), is ‘only’ able to work 20 hrs per week BECAUSE of her disability, and has unsuccessfully applied for PIP twice before (2016 and 2019). Both times, the DWP have informed her that she is not disabled, she scored zero on their disability score. But she is trying again because her M.E./C.F.S is worsening slowly over time and a Jobcentre ‘coach’ recently recommended that she apply because she is ‘eligible’ as a disabled person.

To reiterate – Sally was aware of the difficulties of the PIP process before she picked up the phone to call the DWP to ask for a paper application form to be sent in the post. However, she was not expecting to be on the call for 24 minutes.

Watch Sally talking about this phone call as part of her ME Foggy Dog advocacy work

This spurred her on to find out –

  • If this is a new process (she can’t remember having such a long phone call in 2016 or 2019)
  • When the process changed (if at all)
  • If there was a consultancy period for the changes
  • If M.E/C.F.S was represented within this consultancy work.

First, Sally emailed Vicky Foxcroft MP on Wednesday 29th November 2023 and asked –

Dear Ms Foxcroft,
I had personal experience of the ‘New Pip Application’ phone call with the DWP yesterday and I was concerned about it’s inaccessibility for people with energy-impaired illnesses such as M.E/C.F.S and Long COVID.
I am all too aware of issues disabled people have with the PIP process but this is the first time difficulties applying for the application form have come onto my radar.
I was on the call for 24 minutes, at no point was I ‘on hold’ or in a queue. 24 minutes is a long time to be on the phone talking/having a conversation for someone with limited energy/cognitive dysfunction.
Has the inaccessibility of this part of the process been flagged before? I am wondering if DWP consulted charities/orgs who deal with energy-impaired illnesses when this was ‘in consultation’.
I unsuccessfully applied for PIP in 2018-19 and I didn’t have to call anywhere to get an application form, I’m pretty sure I applied for the form online. Do you know when the process changed?
Best wishes.

Vicky Foxcroft MP tabled the following Parliamentary questions on our behalf –

Conservative, Jo Churchill MP (DWP) responded to question 1 on 8th December 2023

We recognise that even short calls can be stressful or difficult for some claimants with certain types of conditions. We therefore offer a number of alternatives:

We can issue a clerical form, known as a PIP1, which claimants can complete and return by post.

Claims to PIP can also be made by via the Video Relay Service (via Relay UK) for BSL users if someone can’t hear or speak on the phone, or via email/accessible forms for those that need that as a reasonable adjustment.

In addition, we aim to make online applications for PIP available nationally by the end of 2024.

We inform claimants of all these channel options on Gov.UK, or if claimants explain their requirements when they speak to a new claim telephony agent.

Tom Pursglove MP(Minister for Disabled People – DWP) responded to question 2 on the 5th December with –

The Health Transformation Programme (HTP) is modernising health and disability benefit services. We are developing the new service carefully, designing it around the needs of claimants.

We have introduced a digital version of the PIP2 health questionnaire, which is now offered to the majority of those making a claim. This is offered to those who call us to begin their claim.

We have also begun trialling a fully online application for PIP. Since 27 July, people in selected postcode districts may be able to apply for PIP online via GOV.UK if they:

  • Live in England.
  • Are claiming for themselves or helping someone with their claim.
  • Are not already claiming PIP or Disability Living Allowance (DLA), or have a previous PIP/DLA claim.

The online service is an additional optional route to apply for PIP and is not replacing the existing methods of telephony or post.

The current testing phase is allowing us to test the functionality and stability of the service; the department intends to scale the service gradually and safely. We aim to make the online applications for PIP available nationally across England, Wales and Northern Ireland by the end of 2024.

Since these responses were published, Sally has contacted Mel Stride MP (Secretary of State for Work and Pensions) and, again, suggested DWP staff including ‘Wellness Coaches’ in Jobcentres participate in our online training courses. Sally has also contacted Penny Mordaunt MP (local MP who supports our M.E work) to see if she could find out if Stripy Lightbulb CIC can contribute to the Health Transformation Programme (HTP) mentioned by Tom Pursglove MP in his response to question 2. Ms Mordaunt is unable to assist due to her ‘new’ parliamentary role but forwarded our email on to Tom Pursglove MP. Unfortunately, as you may be aware, the reshuffle means Mr Pursglove is no longer in this post and so we will have to wait for a response from his replacement.

Given M.E./C.F.S now affects a large group of people (estimated 1.25 million people met M.E./C.F.S diagnostic criteria in June 2023), M.E./C.F.S needs to be represented within this HTP work to make sure the new process is accessible for people living with M.E./C.F.S and all complex needs are considered.

Sally also submitted a Freedom of Information request to DWP to ask –

“Can I please ask for all documentation around the Department for Work and Pensions change of process for ‘new PIP applications’.

I believe this change happened in 2017-19 and changed from asking for a paper application form via the website to a telephone call.”

She received the FOI response this week (screenshots taken for ease!)


And this information was attached –

Here at Stripy Lightbulb CIC, we do not think this existing PIP process is accessible for a majority of people living with M.E./C.F.S or other energy-impaired conditions (this is a separate conversation to that about whether this is deliberate by DWP or not). Sally ‘only’ has ‘mild’ M.E./C.F.S and thought a phone call would be accessible for her but it was the length of the call that was the issue. Perhaps the phone call questions need to be streamlined to make it more accessible, given the answers given on during the phone call will not be contributing to the application itself, we do not see the need for so many questions during the initial call to get the paper application form.

The DWP claim the process has not changed since the last time Sally applied, perhaps she is wrong and she did apply for the form with a phone call, but the point remains that the call was far longer than anticipated or experienced previously (she has a poor memory but would have remembered a 24 minute phone call!).

Our work on this issue will continue in 2024.

Yet again, we believe the poor knowledgebase on M.E./C.F.S at all levels of the DWP means the application process (at all stages) is inaccessible and inappropriate for people living with energy-impaired conditions. A solution for the DWP, should they want one, is to participate in our online training courses.

Sign up today!

Please note, our ‘Pay What You Can Afford Scheme’ is coming to an end in January and courses will cost £59 per ‘seat’. The PWYCA scheme is applied at checkout currently.

We wish you all a Merry Christmas and a happy and healthy 2024!




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