Hi, my name is Fledgling! Any advice on how to go ahead with legal challenges?

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.

chiarieds

Hi again @Fledgling - sorry it's taken a while to get back to you. Whilst there are similarities in our disabilities, of course they are completely different from a medical perspective. However, with EDS there's also no cure & many fight for years to get a diagnosis.

I didn't know what disorder I had, but researched & concluded it was hEDS, & then, with the help of the founder of our UK's EDS Support group, found 'the' best consultant at the time for my son & I to see (it only took 2 and a half years to see him, but this consultant answered my letters in the meanwhile & rang me up a couple of times to discuss things). That's probably me tho, doing things back to front in finding a diagnosis then getting a consultant to confirm it!

My username here is 'chiarieds' because my research of the medical literature had led me to believe that a neurological problem called Chiari 1 Malformation had to be associated with EDS, & then, by a bit of serendipity, I 'met' a New York neurosurgeon online who was just beginning to find some of his Chiari patients also had EDS. We kept in touch, & he helped me raise awareness of this association here in the UK.

So, perhaps I know a bit about medical stuff, & you have your own obviously extensive expertise, but as far as PIP goes, sometimes you've got to put that to one side. I could talk until the cows come home about the association between Chiari 1 Malformation & EDS but it would not help me get a successful PIP award. I didn't even mention Chiari with my PIP assessment; I've had so much bother getting Drs to understand, so there was no point, & PIP is all about your functional problems, not diagnoses.

Like yourself, there's not much that helps EDS patients in the NHS. Our specialists now concentrate more on those with the rarer types of EDS, which is understandable, but at the same time frustrating as the majority of EDS patients have the commonest type of EDS like myself, which is the hypermobile type (there's no diagnostic test for that either it's just clinical evaluation). I'm of course fortunate that I now do the exercises I used to teach!

How do I know about medical evidence rarely being needed? When I joined Scope nearly 6 years ago I came across this Welfare Rights Officer (WRO) on the forum who helped benefit claimants (& many of our members) & from whom I learnt so very much. I took onboard what he'd learnt & shared. He found that unless someone had say a learning difficulty, where medical evidence could help, then anecdotal evidence trumped this every time. He did rely upon statistics, & I saw at the beginning of this year he'd only supported nearly 6000 claimants with their first tier & 200 with their UT appeals.

Some of his other pearls of wisdom:

• Put the assessor's report behind you when doing a MR
• Unless there are one or 2 irrefutable errors in your assessment report, don't concentrate on these, rather where you should have gained points, & why
• tribunals know that assessor's reports are often of poor quality & won't want to discuss them, they are 'inquisitorial,' & actually do want to hear from the claimant, then just need to decide 'on the balance of probabilities' does a claimant have the difficulties they maintain they have relating to the PIP descriptors
• a medical diagnosis will not be in dispute with a tribunal

I had no evidence about my problems; I hadn't seen a consultant for years. I had received 10 points for both the daily living component & mobility in 2017, but, fairly indignant about the physio thing, I did send in proof of my actually being a Chartered Physiotherapist!

As far as the mobility component went, I reiterated that I'm in pain the moment I'm upright (without mentioning this is due to Chiari 1 Malformation). I thought that describing where the pain was & how it made me feel, & how it impacted on the difficulty I had helped; I'll never know. My award was increased to 11 points & 12 for the daily living & mobilty components respectively. I thought my 'argument' must have been convincing, tho when I later mentioned this on the forum this WRO said I'd just been lucky, as MRs can go either way, & he was no longer helping claimants with their MRs because it was essentially just the luck of the draw.

Similarly when someone says they were awarded PIP because of all the medical evidence they supplied, they'll never know if that actually was the case, as it's just their personal opinion, so not objective. I'd rather believe the WRO who knew what he was talking about. We still keep in touch, & much as I'd often like to ask his opinion about different benefit queries that I see on here, we just chat!

Altho many PIP claimants don't credit a Healthcare Professional (some are even physios) with much, they do understand how patients with some disorders will likely be affected. Claimants say that they want assessors who understand their diagnoses. My argument has always been that I'd be waiting a very long time to find one that understood mine, & what about claimants that are as yet undiagnosed, should they not be able to claim PIP? Even Drs can't know about every disorder.

My argument from my personal perspective is imagine a couple of dozen people in a room with the same disorder, let's say osteoarthrosis; I can assure that they will all likely be affected differently. Does that also help in understanding why medical evidence isn't needed; it's how your disorder affects you, not the diagnosis itself.

If you talk to your GP about your problems, & he writes a letter on your behalf, what you've told them then becomes hearsay. A GP doesn't see you bathe, budget, use the bathroom, make a meal, etc. They can't report, even if asked by the DWP, about how their patient is affected with these activities, just a generalisation about how it might be.

Did your health records identify where you might have difficulty in being able to reliably attempt/do an applicable PIP descriptor, or just detail many tests done, did they say why you have difficulty dressing/undressing or preparing a simple meal? I rest my case!

When sending anything to the DWP all you need is a 'Certificate of Posting' as all the mail is just signed for in bulk at a Royal Mail handling centre before it gets delivered to the DWP & uploaded onto their system. Something else I learnt from him.

Fledgling

HI Chairieds,

You're right we do have a lot of common problems in achieving treatment. I knew there must be more than CFS patients that had difficulties with evidence, I just didn't know which conditions.

What you say is really interesting. I'm sure you're right that the Tribunal will basically re-conduct the Health Assessment. but I can't help exploiting my position as a non-legal person. Courts will give leeway to members of the public, when they wouldn't do so for a legal bod. So a little extraneous material won't hurt

I think it helps to set the tone, the "scene" for a court. They won't regard what they're unable to regard in their decisions, but I always take the view that once something has been read, it cannot be unknown. It's about how they "feel" about your case. It's important. Background is important in deciding the balance of probabilities.

Provided it's not just rude or attacking DWP in general, they'll read it. At least most will, unless they're pre-occupied with getting the last train home. That actually happened once in a county court case I was involved in LOL. The judge told the defence barrier to get a move on because he wanted to get the last rain home ! LOL It was a Friday and he didn't want to get stuck in a Northern Town over the weekend waiting to continue the case on Monday.

I can't help adding some other information because if it goes to an Upper Tribunal, you can't add any evidence. And also there are non-legal people on the "bench" in a tribunal. Their opinion will also be sought, though of course in the final analysis it will just be the essential facts that matter. I don't think it hurts provided it's not reams of extra material.

I know I don't need to pay so much for postage, but proof of service is drilled into me, and besides, I like the little photo of my letter which I get when I send guaranteed next day delivery.

As I sense a fellow "seeker after truth" LOL, Have you seen "pipinfo.net." It's a really useful resource - all the case law is in one place for you , and you can search under various headings for anything relevant to your own case. I won't be referring to any of it in my evidence, I don't want to appear like a "barrack- room lawyer" ,but it's quite useful to know how previous decisions were arrived at and avoiding common pitfalls in drafting your own evidence……….and principles can be applied to other situations. No point in arguing something thats already had a judgement against. The court Clerk will probably be up to date on everything and will advise the Tribunal if something relevent pops up, and if it does go to a higher Tribunal, it's something for a Barrister to get their teeth into and develop.

This tribunal preparation is really taking a toll. I'm just waiting for my PIP case notes now and the Health assessment from the UC system. I've had my legal pack , but it's the case notes I need to see if they give me a feel for their objections and what advice they've sought. There might be something useful there.

I self medicate, and it's the only way I could manage to go to tribunal it's an exhausting process once you begin an appeal isn't it?

I'm doing all this because of the injustice I feel. I'll probably be excluded from PIP when the changes come in. LOL It just wound me up.

I expect the outcome is more dependent on the type of day the judge is having LOL.

Have a nice day.

charl1234

Get a occupational health assessment done by local authority

DeerNewt92

I get pip for CFS but I'm bedbound and severe health now

I was honest and had medical records saying how bad I am and pm phone daily asking for help.

Im getting worse because there is no help, I have been waiting 18 months on bed and doctors keep referring me to CFS department who say to severe

There is medication that has helped people buy you can't get it on NHS only private

So I am now waiting for a neurologist appointment

My poo pays for my care but it's not enough and been waiting 8 months for a assessment and only me and son who is a young unpaid career in full time education

I have been to A&E and told no beds in October 2024

So I know exactly what you are going through,. doesn't matter what NICE or government say on CFS it's not done

I am 43 worked all my life full time and received no benefits and now can't afford food

My advice is don't ask people or group what to say on pip form, be honest on how yyare affected daily show medical records asking for help and pain relief and family statements

Imot what you have it's what you can do, also stress I believe I'm worse because of stress

CFS symptoms are also same as POTS and long COVID and fibromyalgia

Request a neurologist appointment

Good luck

chiarieds

Hi @Fledgling - there are other disorders similar to ours which don't necessarily have diagnostic 'proof' such as fibromyalgia (the pain of which some medical papers suggest is similar to hEDS), many cases of complex regional pain syndrome (CRPS), Functional Neurological Disorder (FND), etc.

If you look at just 'chronic pain,' then even the experts are divided as to what causes it/makes it continue in some disorders. It's difficult to show therefore why you are in pain, as pain is very subjective. This again is why I say, as far as PIP goes, your anecdotal evidence matters, as we're all different. This does not undermine the very real difficulties that someone is facing with a particular disorder like CFS, which I think is often a misnomer as it doesn't say enough. Myalgic Encephalopathy is also way more descriptive than Myalgic Encephalomyelitis according to Dr Shepherd for whom I have enormous respect, & who has ME himself.

My son's wife was just about dismissed by her previous GP last year as only having 'post viral fatigue' after I mentioned ME, which was questioned as she couldn't possibly have had this since being a teenager as ME doesn't affect children this GP 'knew'!

Glory, sometimes I give up on Drs. There's no ME specialists near us either, & altho my son's wife asked me to accompany her to her GP to help advocate for her, she's been put off pursuing this further. We did actually get more sense from a 4th year medical student we saw next, who thought ME likely, but she had to call in a GP at the end of her review, who noted that her vit D was a bit low, so she's been left with vit D tablets since then with no improvement. If it's ME then it's 'mild' compared to yours, but it just might be that.

Probably why I'd say you have ME rather than CFS as I feel that's a term that's somewhat disparaging in the medical community.

A tribunal is different to the sense in which you know it. It will consist of a judge, a Dr, & someone with an understanding about disability. The latter will not be an expert, & could just be a parent/carer of a disabled person for example. Any of them, or just perhaps 1 or 2 will ask questions, but it's not another health assessment at all, it's just trying to ascertain facts as to how you're affected with your daily living & or mobility with regard to the PIP descriptors. You're literally starting again, as in having nothing/no award at all with a tribunal. If they feel that you'd lose your current award, then they will warn you, & if you're sensible you'd not proceed, & your award would lapse, so you'd go back to your current award.

Sometimes the DWP will contact you beforehand making an offer. This, as you might guess. will be either less than they think a tribunal would award, or for a shorter duration, or both. You can accept, then later appeal again without having to go through another MR.

I do agree that 'background' is important, but giving a couple of recent, detailed descriptions as to how you're affected; that anecdotal evidence, is important. e.g. when did this occur, what exactly happened, why did it happen, did anyone witness this, were there any consequences to doing/attempting any applicable descriptor such as pain, increased fatigue, etc? That's the background. You hopefully won't ever to have to worry about case law, tho there's always an exception but only if it goes to an UT!

Yes, the WRO was the one that used to give links to case law, the regs., etc. & I tend to read 'most' everything, as that's my way of learning, tho I had no reason to disbelieve him. pipinfo is a good resource.

The DWP will just object to your appeal for whatever their reasons, you know they're going to do so anyway. Please just concentrate on your anecdotal evidence. It honestly is the best advice I could give you, as I do to others. I want the best for you, but am concerned you're going off at a tangent due to your background.

If anything goes to an UT it has to be because an 'error in law' is found. These are fairly easy to find, but would they mean an award could be made/increased, if not, then it's not worth pursuing.

If you would like some 'light reading', then if you follow the links from the Benefits and Work site clicking on '''Changes to benefits for disabled people' here,'' it leads you to the House of Commons library where you can download the full report: https://www.benefitsandwork.co.uk/news/commons-library-publishes-55-page-green-paper-briefing

Fledgling

deernewt92

I am so sorry to hear what you're going through. It makes me so angry!

I have been honest. I've provided all the evidence I have. The only treatment I ever had was at the start when I was well off and could afford it (I was a director of a private business then and earned a lot), I've provided all the evidence of referral requests that have been refused including neurology who said I should be referred to a CFS clinic - none exists!

I even had my MP onto it, and they recieved a response from the Integrated Care Board (ICB) which decides on which services the health Trusts in their area provide.

Their response was basically yes theres a service gap, there is no service and that this is basically the same throughout the country. It read almost like a typed shrug.

I wrote to the local Health Trust Board. They said they only provide services that are requested by the ICB, and then they enter into negotiations about what they can afford. It's like a circular problem that just goes round and round.

I was intially prescribed something that worked but then it's off-label prescription was prohibited and I've been self-medicating with it for 14 years now. I use it at my own risk. It stopped being as effective over time, and very much so after I had a relapse and became worse.

I couldn't be online or taking an appeal to tribunal without it. It all that's keeping me this side of being able to live independently. But that's getting harder and harder.

I'm not really asking for advice on PIP. I'm trying to find out how to get a policy about lack of evidence, when there's no evidence to provide to a high enough Court to get Case Law. We're penalised twice. No medical Treatment impacts the benefits award. - another circular problem and I believe it's a form of disability discrimination.

It's very clearly stated on my award that lack of treatment equates to aids or appliances - that's a policy decision it's not the law; it's internal policy and practice. It was their over-riding consideration.

It is was not -as has been others stated belief and expectation, that they judged according to my disability - they clearly, incontravertably judged according to my treatment. And they're doing it because they can get away with such a policy - because of the way they're "Interpreting" not following the law - it's a lack of specific direction in the law that's being exploited.

They're equating treatment with degree of disability - at least in my area - thats bad news for CFS and others as I've now found.

If they take into consideration the treatment you receive when deciding your award, they must also take into consideration situations when no care is available, or it's an injustice a discrimination.

It's being held responsible and penalised for something you have no control over, because the disabling condition you have is not treated; unless you happen to have the money to pay for a private consultant who will provide the evidence you need.

I can't bare anymore discrimination.

I'm so angry about you're situation. I wish I knew where you where I'd use my medication to come and help you. God bless your son.

You know they're getting close now. There's been a flurry of research since covid.

They've found changes in the gut micro-biome. ( a strong association with IBS )

Changes in MRI scans and cerebrospinal fluid showing changes to neurotransmitters, and regions of the brain.

Microclots in our blood.

Medicine as a whole still has one foot in the former belief that CFS is not organic, it's psychological, hysterical - that's a position that's getting harder and harder to support. The new understanding isn't filtering through medicine fast enough.

People are inoccuated with professional opinion towards this and that when they start their careers. That's hard to displace, but the NHS is supposed to implementing a training programme following a recent MInisterially led consultation. Change has started and it will continue; Hang on in there newt. keep yourself well enough to take advantage of future improvements.

All the above medical discoveries are sound research. It's just the final push now. We know money's scarce all over the health system, but I wonder if the reluctance to invest in developing a test is partly due to the consequences it will bring on providing health care after, and benefits. I could only prove my diagnosis because of the investigations and treatment I paid for privately. All my love to you and your son.

I know it's probably a daft thing to say but you really need to focus on not getting worse now. Just try to slow down your anxiety and accept that getting help will be slow. You know about spoon theory I expect. I found it helped with putting pacing into practice.

Remember both you and I have had medication that helps, and that proves it's treatable.

There is an answer and we will reach it. We must, the govt must, because now there's a virus circulating (Covid) that causing people to become similarly ill each and every day. It's costing Billions - all those engineers, doctors, teachers, lawyers ,nurses, business people, skilled employees etc etc becomming economically inactive.

Just keep putting one foot in front of the other slowly, and try to be calm in your efforts to get help , one step a time. It's exhausting I know when you have to advocate for yourself.

And Chairied, thank you I hadn't thought of that. I just have to get over my reluctance to make appointments and embarrassment about having anyone visit me in my encroaching squalor.

I am also largely bed-ridden and using an infrequently emptied commode, having very infrequent baths and getting fatter and fatter from readily available junk food like chocolate and cripsps that require no more preparation than removing the packaging. I'm losing muscle tone by the day, and failing in my (medicated) efforts to hold back the domestic squalor. I also have ant-phospholipid complex, so I'm probably a prime candidate for a stroke - at which point I expect I'll be worthy of healthcare! and can provide evidence of my treatment ! LOL

Onwards and Upwards eh ? x

Fledgling

Chairieds,

You're a star - I've found occupational health, after a minor diversion into the LAs internal employee services. LOL I could never get access to MSK tried twice - " no specialism" response.

I will now probably spend a couple of weeks buiding up courage to face my personal fears and embarrassments before contacting them. But I will contact them. It's almost shocking to find something I might actually be able to access - thankyou !!!!!

You're absolutetly right of course about my evidence and I will incorporate more personal narrative and photo's ( because I never know if I'll actually get to an appointment).

I am certainly going off at tangents and am repeatedly having to delete something I've got carried away with and wasted energy writing. It's my personality type, I'm afraid, made me good at my job but wastes energy now. I can't help it. I'm honed to spot dysfunction in an organisation and remedy it. It can actually make me feel ill to see counterproductive, stupid, and poor practice - no joke!! I can literally feel as though i might vomit LOL

I would probably have murdered somebody or been sectioned if I'd worked in the NHS. It made me feel ill for days after watching the docudrama about covid and the refusal to hand out protective equipment to staff who were treating Covid patients. It was because they were on trolleys "oustide of the specified ward" in corridors. I would have driven me to direct action, without a doubt.

I won't be able to disregard it totally but I will make it less prominent, in my evidence, if not my mind.

I found it helpful using the case law to understand what they find relevant. For example they're not concerned with how effectively you can clean yourself in either a bath or shower, just that you can carry out the activity -that made a lot of my evidence irrelevant. I now concentrate instead on the respective levels of fatigue caused by each.

There is also case law regarding CFS, about preparing food and the effect of other activities on that ability. I know it's in the guidance - but the specific judgement helps, and it'll be a gound for appeal if not accounted for.

I meant to say that I'll be judged on each of the activities again, as if it was a totally new health assessment. I've researched the process, and know it's not the same procedure as a HA. but thanks for mentioning it.

It definately has a use in preparing evidence for a Tribunal Chairieds, to look at relevant case law.

The nomenclature; I dislike ME because it's diagnostic and incorrect. CFS is totally inadequate because all adults are chronically fatigued. But I can't use something diagnostically incorrect; we don't have brain swelling, and it might be "undermining" amongst clinicians to use that term with them.

I also am mindful of how incredibly severe this illness is for some people and feel instinctively that I should reserve the term ME for those people, within the community use of the term - silly I know but it's how I feel. I don't have a feeding tube. I can leave my bed sometimes.

You're very helpful. Thank you. Enjoy your day x

PS I may be joining you in wobbly joints now. I have a wobbly knee now, which I keep kinking. I'm almost cetain is the loss of strength due to inactivity. A sympathetic joint wobble Chairieds. LOL Symptoms because of symptoms, hey ho, shrug.

I'm knackered now - but it was worth it LOL !

Fledgling

I'm sorry, I realised after that I mught have sounded as though I was making light of your condition Chairieds, i'm not, I'm making light of my own relatively insignificant aches and pains.