The Department for Work and Pensions (DWP), the UK’s social security agency that is supposed to support disabled people, just denied full benefits to a chronically ill and disabled person who lives with 16 different diseases, illnesses and conditions.

The decision shows the abject failure of government outsourcing. But it also demonstrates the callous and incompetent nature of the welfare system.

UPDATE: we urgently need to raise £1,500 to begin with to be able to continue Nicola’s treatment, otherwise everything will have to stop. This is unthinkable for me. If you can please help, donate via http://www.paypal.me/MrTopple

16 illnesses and counting

Personal Independence Payment (PIP) is a welfare entitlement from the DWP. Is it intended to help towards the additional costs disabled and sick people have due to their conditions.

My partner Nicola Jeffery is one such person. You can read all about her medical story here. In short, she lives with:

• Hypermobile Ehlers-Danlos Syndrome (hEDS).
• Myalgic Encephalomyelitis (ME).
• Postural Orthostatic Tachycardia Syndrome (POTS).
• Deformations in left foot, left leg shortness.
• Polycystic Ovary Syndrome.
• Temporomandibular Joint Dysfunction.
• Craniocervical Instability (CCI).
• Atlantoaxial Instability (AAI).
• Hypotension.
• Megaloblastic Anaemia.
• Peripheral Neuropathy.
• Chronotropic Incompetence/Intolerance.
• Hypothyroidism.
• Mycotoxicosis.
• Gastroparesis.
• Non-epileptic tonic clonic and focal autonomic impaired awareness seizures.

Oh, and possible Secondary Mast Cell Activation Syndrome. We’re still looking into that.

Nicola has deteriorated. The CCI and AAI are becoming severe and dangerous. She had a seizure a few week’s ago which caused a fluid leak from her brain. She has brain stem compression. Now, she often cannot leave the house without a wheelchair, as she is too weak:

I gave up work full time to support Nicola. You can read more about that decision here. Since then, we have accumulated probably the best clinical evidence of her illnesses available in the UK. I’d put my neck on the line to say most people have not got the extent of a diagnostic picture she has.

A financial black hole

It has cost a small fortune from my mother’s life savings, and we are now having to fund raise to get further treatment. We are having to fund raise for her seizures, like the one below:

This is because the NHS will only recognise them as “functional/dissociative” or “psychomatic”, even though I have hard clinical evidence that proves otherwise.

Now, we are also having to try and raise the money to continue her treatment.

She is currently under the care of one of the only doctors in the UK that attempts to properly treat ME. She has been on a programme for several months. But now, if we don’t raise £1,500 quickly, this will have to be stopped dead in its tracks, and all the progress she has made so far will be undone. This is terrifying.

We also have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.

This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser.

To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs.

We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. Ultimately, we want Nicola to be tested to her son can then get the diagnoses he needs. This means he won’t have to endure the years of being told his symptoms (some of which he already has) are not ‘all in his head’. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.

You can read about our fundraising here, and if you can help with the £1,500 for the ME treatment, or the £8,000 for the EDS-related work, please donate via this link:

http://www.paypal.me/MrTopple

She is house bound for 85% of the time. When she does go out, she has to build up to it. Afterwards, she is incapacitated for several days. This is just one aspect of her health. The implications of all her conditions are extensive and systemic, affecting every part of her body.

Going back to the DWP

So, she applied for PIP. We submitted several doctor’s reports, a complete diary of Nicola’s life for the entire month of May, her complex treatment regime and more.

After a PIP assessment where the assessor let a fire door slam onto Nicola, almost knocking her over and injuring her hip, we got this decision:

As is usual, the assessor appeared kind and understanding, which we know is never a gauge of the outcome.

I wasn’t expecting the DWP to award Nicola higher rate for both without a fight. But I was expecting standard rate mobility and possibly higher rate for daily living. To say I was furious wouldn’t do my anger justice.

Let me break the DWP’s decision down for you using one area as an example. We have clinical evidence to back up every single claim I make below.

Full time caring? Not according to the DWP

Around four hours of my day is spent preparing Nicola’s complex medication regime and cooking. The former consists of 26 different supplements and pharmaceutical medications, administered at six different points across the day.

This is what she takes in the morning:

The latter consists of a controlled carbohydrate and sugar free diet, where every ingredient has to be measured and the calorie (kcal) content calculated.

Nicola has dysphagia, which means she has difficulty swallowing and can be at risk of choking. She also has impaired cognitive function, meaning she cannot remember what she is taking when. Her impaired cognitive function means she struggles to follow written instructions for something with this level of complexity.

In her May diary, we noted that she attempted to cook a meal once. She struggled to remember the quantities of ingredients and was left exhausted and distressed after trying.

All the supplements, medications and the diet serve various functions to try and improve Nicola’s health; specifically with her ME and hEDS.

To be clear: this is not our medication and diet plan. It’s not a “lifestyle choice”. This is from one of Nicola’s private, General Medical Council (GMC) registered doctors. We also have written evidence of this plan being approved by three NHS, GMC-registered consultants.

The DWP’s score for Nicola on “managing your treatments” was 1 point, the minimum.

The reality? She should have scored 8, as I have to spend more than 14 hours a week preparing and administering it. I also have to “monitor” her “health condition” by taking five blood pressure, heart rate and temperature readings across the day. This is because some of the medication she is on results in changes to these. I also have to “monitor” her “health condition” by documenting her symptoms and being proactive when she has, for example, a Post-Exertional Malaise (PEM) crash, as this requires additional support and medication.

The DWP did not recognise any of this. It was the same story on most of the other descriptors. I won’t go into them as this article will turn into an essay.

But it’s the mobility decision that is the most infuriating.

Mobility chaos

The DWP did not believe that Nicola’s uncontrolled, random seizures warranted me having to support her to make familiar and unfamiliar journeys. Even though I have witnessed her having them in the street, and also at any time of the day. It did not equate that if she did have a seizure, on her own, in the street, and collapsed she would be at serious risk of neck injury owing to her CCI and AAI. Nor did it intersect this with the fact that Nicola can only attempt to go out one day a week.

It didn’t equate for the fact that Nicola cannot risk using public transport anymore due to, again, the risk of injury to her neck. Nor did it equate for Nicola not being able to use public transport anymore due to the risk of infection due to her weakened immune system. It didn’t equate for Nicola having an anaerobic threshold of four metabolic equivalents (METs), meaning she cannot do any exertion which takes her over this. Walking the 0.8km to our train station would be this. Going to and from a bus would use up part of those four METs.

The DWP didn’t take into account that Nicola can no longer plan and go on an unfamiliar route unaided, due to her cognitive impairment leaving her at risk of getting lost. Nor did the DWP take into account that Nicola forgot her parents address recently. They live 30 seconds walk away from us.

A whitewash

Overall, the assessment was a whitewash of the severity of Nicola’s health. The assessor even had the audacity to say that she was “not diagnosed with any cognitive conditions”. Even though ME, hEDS, CCI and AAI all effect cognitive function, as stated in the literature available.

As a side note, the assessor also said:

You are not taking any medications to treat your symptoms of nausea and vomiting and there is no evidence to suggest these symptoms in your plan.

The second part is firstly a lie, as the evidence was there in Nicola’s diary. The first statement about medication shows the incompetence of the assessor and the DWP. Nicola is taking adrenal hormone replacements which, in part, her doctor has prescribed to attempt to improve her digestive transit, thus improving her gastroparesis.

Back in 2016…

What sticks in the throat even more is that Nicola is getting the exact same PIP award as she was previously getting in 2016. That is, standard rate daily living component. This is despite at that time only living with an incorrect fibromyalgia diagnosis. But moreover, this is despite a severe deterioration in her health, which I have fully documented. It shows a systematic failure by the DWP to ensure health assessment providers comply with working from the standardised guidelines. Or the department has built in this fault in the system to ensure the muddying of waters when it comes to a level playing field for claimants across the board; with the goal of saving money. It’s probably a bit of both.

The decision also shows the preposterous contradiction that sits at the heart of the DWP.

Toxic contradictions

We are bombarded with this constant narrative of ‘scroungers’, ‘shirkers’, ‘benefits cheats’ and the notion that the government wants disabled people to get back to work.

Yet if you buy into that distinctly capitalist mantra, Nicola’s decision goes against this. Surely the DWP wants to support her to live independently and to get back to work? But by denying her entitlements it’s stopping her health improving. And ultimately, it is stopping her finding a job.

So, which is it?

Neither. Apparently the corporate-driven push to force as many sick and disabled people into work doesn’t apply to complex chronic illnesses. Nor does the notion of the state providing support when life metes out its worst at you, apply either.

Complex chronically ill people, often living with ME and EDS, are literally being left to rot. In Nicola’s and other’s cases, it is partly because the system and specifically the NHS does not even recognise her conditions. The assessor didn’t even know what several of them were. It is also because the PIP criteria is essentially incompatible with these kind of conditions.

Their carers and advocates are also left on the scrapheap. They are left scrabbling around, begging and borrowing, desperately trying to garner some minuscule quality of life for their loved ones. The same DWP contradiction applies here, too. I cannot work full time and therefore contribute tax while Nicola is so ill. Yet by denying her full PIP I cannot get state support either.

Lives, wasted

Two lives. Literally being wasted.

And for what? To save money on a welfare budget [pdf] that makes up around 2% of the UK’s total gross domestic product? We and millions of others are literally paying the price for economic illiteracy, personal incompetence and ultimately nefarious greed. But of course, the system is such it’s supposed to be like this.

Overall, Nicola is housebound the majority of the time. Her son has had to move into his dad’s due to the severity of her illnesses and our attempts to improve her health. She is left:

• Unable to cook.
• Unable to clean.
• Unable to write more than a few sentences.
• Unable to have visitors for longer than two hours.
• Unable to use social media for long periods of time.
• Unable to read more than a few pages of a book.
• Unable to have sex.
• Unable to eat properly.
• Unable to have proper bowel movements.
• Unable to shower daily and properly.
• Unable to live any kind of life.

If she does any of the above, her health deteriorates.

And still, all this is worth £57.30 a week to the DWP.

Out of options?

We are now left with a Mandatory Reconsideration, and most likely an appeal. Moreover, we are also left with hardly any financial support.

But most of all Nicola, who was for years told her 16 illnesses were ‘all in her head’, is left feeling disbelieved, isolated and abandoned. Again. Like she has for most of her adult life, not least by her family, some of whom still disbelieve her to this day.

All this just so the DWP can save a few pounds and force people back into work. Our society is truly broken.

I want to give her some quality of life back, despite what the DWP thinks. But I need your help to do it. Please donate what you can below.