Hi, my name is Fledgling!

Fledgling

Hello Everyone,

I've run into a knotty problem.

On my PIP Assessment my Health Assessor has stated that the abscence of treatments- which she's listed "suggests that aids or appliances are appropriate in managing my Fatigue." And that's precisely what she's done - 2 points in every descriptor I've scored.

Long story short. I have Chronic fatigue syndrome (16 years), and became worse in 2024 when I had a relapse and now have symptoms of severe CFS. - GP confirmed. There is a well documented protracted history and Parliamentary record of the difficulties CFS patients have accessing NHS treatment. It's not a secret.

There are no services for CFS provided by my local Health Trust. This has been further complicated by the 2021 NICE guidance that requires cliicians to have "specialism". I have been refused NHS referrals 4 times and since 20201 citing "lack of specialism". the NICE guidance that was intended to improve the care of CFS patients has become the means of refusing it.

Lots of evidence of no NHS treatment in my area has been provided to the DWP, but they're refusing to budge. It's not statute that's causing the problem but the way they're choosing to apply it eg., they are empowered to disregard the GPs statements BUT they are not required to. There is no statute that says "aids or appliances" must be selected in cases of inadequate current medical evidence. I paid for initial treatment so they can't dispute that I have the condition.

It's internal policy and practice that's leading to my being discriminated against because there is no treatment available to me - not statute.

In brief I'm experiencing discrimination in health care and the DWP are using this to further discriminate against me in benefit award.

MY question is this;

Are the DWP not required to make "reasonable adjustments" to the way they carry out their duties, such as to prevent disability discrimination?

We're accustomed to this meaning things like large print and ramps, but there's nothing I can see that limits the Acts application to these matters.

Would it not have been a reasonable adjustment to accept the evidence of my GP in view of the fact that there's no treatment (well evidenced) available beyond Primary Care Level?

By the way; the Govt have just legitimised the practice of NHS Trusts to "rationalise" their waiting lists. Ie kicking people off waiting lists or refusing acceptance onto them. They've financially incentivised this practice, which has been happening for some years now. So many disabled and sick people are going to find themselves thrown back onto Primary Care ie their GPs, whom as we know, the DWP are authorised to ignore.

This issue is going to become much more widespread.

This really needs case law. But as an individual I am likely to find a remedy at Tribunal, which will prevent me accessing the higher courts. Even if I get to a higher Tribunal their usual remedy is to kick it back for a re-hearing at First Tier Tribunal who cannot make case law. Only an organisation such as Scope etc., can bring a Judivial Review on behalf of the people who's interests they act on behalf of. As an individual my chances of changing this a re next to none, not to mention trying to find £20k +

It's why the DWP can get away with it. ….. the worst they'll have to deal with is a changed decision imposed by the Tribunal. They know that most claimants won't get that far because they lack the personal resources, and it's a difficult decision to argue using benefits law, because they're not contravening that statute.. I think the discrimination act may be the only avenue.

I'd appreciate your thoughts. I'll get a resolution through Tribunal, but that won't answer for the numerous claimants that will be affected by this. I'd like to get this further into the legal system and achieve some case law.

thanks

chiarieds

Hi @Fledgling - & welcome to the community.

You've mentioned a lot of important things, which I'll try to address where I can. By way of explanation I'm a long-retired physio, but still read about many medical matters, tho mainly those neurological, this includes reading medical papers, NICE guidelines etc. I also have a hereditary disorder (the hypermobile type of Ehlers-Danlos Syndrome/hEDS) which is not going to improve, & claim PIP.

I have a fairly decent understanding of ME/CFS as it's a condition I've learnt quite a bit about in the past few years.

So, first, your PIP decision letter; unfortunately a DWP decision maker often relies on an assessor's report, & that, again unfortunately, often contains several 'cut & paste' phrases, which most approximately they deem 'fit' your circumstances. Often they simply do not, as they do not reflect the difficulties you face, appear to minimise these, & cause an awful lot of upset in the process, making a claimant feel disbelieved.

I can appreciate your total disbelief that aids would 'manage' your condition, tho some things may help, but they had to give the closest they thought in reflecting your level of difficulty. You can imagine how I felt when my decision letter said because I didn't see 'a physiotherapy specialist or pain specialist' I could walk further than I'd stated without being in pain (effective pain relief is very difficult in those of us with hEDS). I had stated I was a physio.

This was all before I joined this forum, where I've since learnt more about PIP.

Medical evidence isn't usually needed, as your diagnosis won't be in dispute, & PIP is rather about your 'functional' ability in being able to do any applicable activity 'reliably.' Just over 50% of PIP claims are successful with no medical evidence whatsoever. Any GP/consultant is rarely contacted by the DWP; the onus is all on the claimant. It's your anecdotal evidence that matters.

There are guidelines that the assessors use (please see the 'Reliability' section here as it's a very important concept): https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

There are also guidelines for decision makers, which are based on the Social Security Regulations about PIP.

If you haven't given enough of the correct detail in your claim form, then the decision maker will rely upon the assessor's report.

An individual can ask for a Judicial review, tho I would seek help if doing so, & suggest a 'letter before claim' comes with no cost. However, I can't see here that such action is applicable.

I'd first have a look at where points may be applied: https://assets.ctfassets.net/vms0u05139aw/pip_descriptors.pdf/93820be60dcc6420191292ed56e2c95f/pip_descriptors.pdf

then, if you haven't got an award, or don't think these points reflect your level of difficulty, or you might increase a standard award to enhanced (which needs 12 points or more), then the next stage is a Mandatory Reconsideration (which is the first stage of appeal) where another decision maker will look at everything again.

I think I've said enough for now, & with apologies if you already know all this. For now, please come back if you decide to do a Mandatory Reconsideration (MR) as we have members that can help with that (just please don't ring the DWP to request a MR as it's way better to put it in writing). Hoping some of this may help.

Fledgling

Thank you it's a great relief to "talk" to someone with experience.

Yes I've done the MR and am in the process of preparing the tribunal evidence.

I take your point about medical evidence, but in this instance the HA has stipulated

" ……nil physio or occupational therapy, and although her fatigue is long standing no fatigue management …..suggesting aids should be sufficient in managing her fatigue.", and she's selected aids and appliance in every category I've scored any points.

even in preparing food, which was totally inappropriate for me - and which the DWP have changed to microwave as they've recognised the error of using "aid or appliance" for that but not considered that error in respect of all the other activities.

This has been repeated verbatim in the Case Manager's decision. the lack of medical treatment has an an impact . I feel the DWP are effectively implying- no treatment equates to minimal disability.

The trouble is it does seem to be a little like the wild west when it comes to HAs. My impression is that others may have taken a different view. Indeed I've just been allocated LCWWRA ( I know it's different elements that are considered.)

I can assure you they had plenty of evidence. I got my health records and took the trouble of finding relevant parts for them. This is a matter of internal procedures not statute.. I'm suprised to hear that many claimants do not provide any medical evidence, I'm being held over a barrel because of it.

Maximus were my assessors maybe it's dependent on the agency?

I have, since the assessment, made myself familiar with the guidance, statute and case law, though don't ask me to quote it!

I also worked in the Public Sector for some years and enforced statute ( housing law mainly), but I know that every Public service must have regard to "public law" principles about how they perform their function eg not acting or enabling ultra vires etc.

An individual has to exhaust other means of settling the dispute and achieving a "remedy" before their request for JR will be allowed, and as an individual can have that complaint adequately remedied before exhausting other remedies, they will not be permitted to have a judicial review.

Judicial Review under the benefits legislation is difficult because the DWP are given extensive liberty. Also the established legal route after a first tier tribunal (FTT) for benefits is a higher tribunal, and they tend not to make case law, but to send the matter back to the FTT.

It's very very difficult for an individual to achieve a JR, because you can only complain if you are directly affected (not on the wider principle of an unjust application of the law), and you have exhausted all other means. It's also tightly restricted to within 3 months of the injury.

Disability groups don't have to be personally involved in an "injury" - they can take a JR on the basis that it's in the interest of their members to correct an injustice "at large" so to speak- the principle of an injustice.

How did you find out that most cases don't require evidence? I might be less upset by this issue if I could satify myself there isn't currently and won't be widespread discrimination related to evidence. Is it in the Office for National Statistics Reports?

There isn't a specific duty to provide medical evidence in the statute, but they're empowered to ask for it, and do, as far as I can see. They certainly send for the GP reports. I know the onus is on the patient to aquire it from their consultants, the DWP won't because it attracts a fee (non recoverable).

Maybe it's CFS they don't like, there's no diagnostic test and it's open to abuse, but that's not my fault. It's the medical "no-mans-land" that we've been dumped in for years.

My experience is it's your medical not your anecdotal evidence that's prioritised. I'm not even certain that submissions are thoroughly read, there were some incorrect spellings of medications in my HA report. I'm almost sure they're not read by the Case Manager at the initial award stage, they rely entirely on the HA. It won't get read until appleal as far as I've been able to ascertain from benefits advisors. They process thousands of applications, they won't look at it until they have to.

I'm interested to hear how you resolved your assessed mobility problem, it's essentially the same issue as mine - no evidence!

Don't worry. Everything goes in writing and recorded delivery !

Thanks again.