My care this January

January in review

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I did not leave the house once, which is typical of the month if I stay in the country. The weather customarily effects my arthritides etc.

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I had no visitors during the month. Probably best given health-issues (more below)!

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I started February as a continuation of much of January, with diarrhœa!

January gave me two serious bouts. The first we suspect was norovirus which lasted six days and then over a week to recover. Prior to fully recovering I had a further three days of diarrhœa. Again over a week for my system to recover.

I was forced to stop taking most of my meds, as: one, I was really not up to swallowing, I was for the most part sipping liquids; and, two, the medications dehydrate, so the NHS advises to stop until recovered from the dehydrating effects of diarrhœa.

Yesterday I was due to start taking the full dose of the dehydrating medication, which I managed just before a fresh bout of diarrhœa.

Thankfully matters seemed to have stopped me up. [Fingers crossed!]

 

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January had 31 days.

Housemate gave me 30 meals (4 breakfasts, 5 brunches, 2 snacks, 19 dinners). Of the 19 evening meals, 2 were snacks; only 17 were proper cooked meals. The breakies/brunches were solicited, i.e. only proffered due to my recalling to request. The 2 snacks were unsolicited. I made dinner once with housemate supervising. Over all it works out at an average of one meal per day, where ‘meal’ might be a slice of toast, cereal or a sandwich for the whole 24-hour+ period.

I missed 4 evening meals due to my own illness or because it was too late to eat by the time housemate came home (after 21.00).

Housemate forgot to feed me on 6 evenings.

Housemate was too ill to feed me on 2 evenings.

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Over the course of the month I was assisted with 3 baths, 0 showers, 0 washing, 0 teeth-cleaning.

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All in all, this appears to be a typical month, and certainly much better than December’s record.

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P.S. As ever, my apologies for how Blogger makes the text appear. I have tried other options, but it makes it worse. 

Disablies are Dying in the UK

I have been having a really bad few months.

Since prior to my housemate finding new employment, I have been trying to obtain a formal statement of need from my local social services.  I had one but being socially minded, I chose to let my housemate look after me whilst he was unemployed, thus saving the Council money in paying for formal carers. A social worker got involved this time, instead of the usual council assessors. The assistance was requested in October, and only just before this bank holiday weekend did the social worker contact me with her assessment, which completely ignores my known needs as backed by my own G.P. (family doctor). This will now of course require me to appeal, further delaying the assistance I need to eat, take medications and deal with my personal care. My housemate now is so fed up of it all, that he has decided to throw his hat in the ring and advise Trafford Council that they either come up with an appropriate care package, or he will refuse any caring for me. This of course will then mean the council and social services will have to provide a much more expensive package as well as the cost of more frequent visits from the social worker and other bureaucrats. There is a social care crisis in England & Wales: tens of thousands of elderly, disabled and sick folk cannot obtain a care plan and thus the care they need just to stay alive.

I was assaulted and injured in December by an acquaintance who knew full well I am disabled and could not fight back. Because he is dating one of my good friends I feel constrained about reporting it to the police, as he would end up with a criminal record and the likelihood is that he would lose his livelihood. This then would likely put inordinate pressures on my friend’s affinity. The evidence is mixed, but the general consensus is that disability hate crimes have been on the increase since 2010. A report by the EHRC was misreported as stating that there had been no increase; but the agency swiftly issued a clarification. Unfortunately, by then the media was reporting the non-increase in hate crime...

In January I finally received my electronic Personal Independence Payment (PIP) claim-form from the UK’s notorious Department for Work & Pensions (DWP). It was necessary to get my Member of Parliament (MP) involved as the DWP were very reluctant to assist me with a non-paper form and provide me with one that could be completed via computer. This is a legal requirement of UK anti-disability discrimination legislation. However the DWP regularly fails to issue forms appropriate to inter alia blind & partially-sighted folk, for example, so is constantly breaching the Law. They also do not publicise the email address from which one can request accessible format forms. I only found it out due to having connections from my disability rights activism. (Ultimately I hope to lodge this issue with the Equality & Human Rights Commission (EHRC). Unfortunately, the UK government has cut this body’s funding to the bare minimum, so that it is now very difficult for them to fulfil their statutory obligations.) Due to arthritides writing for me is exceptionally difficult if at all possible. The form is actually a forty-plus A4 page booklet. I have cognitive difficulties at the best of times; but during the winter months my (progressive) aphasia is at its worst. Thankfully, I dealt with a very understanding civil servant who permitted an extension, so I had sufficient time to fully answer all the questions. It is now more than two months since the DWP received my claim and I have still had no decision.

Very large numbers of disabled individuals have been losing their disability payments as they are moved from Disability Living Allowance (DLA) the UK’s previous, far from generous, top-up payment for the extra costs incurred by those with impairments and disabilities. Losing this extra cash is not the only ramification of being found ineligible for PIP. It is an access payment to other social security benefits, such as housing benefit and the Motability scheme, whereby one is entitled to an adapted vehicle, electric wheelchair &/or mobility-scooter. Tens of thousands of disabled folk have had their adapted transport confiscated and are now trapped in their homes, many also have lost their jobs as they are unable to access public transport. The Citizens’ Advice Bureaux (CAB) network has calculated that some half a million disabled will lose out under the UK government’s cuts to benefit payments.

[*TRIGGER WARNING* Please do not continue reading if discussion of death/suicide may upset the reader!]

One of the most under-recorded and under-shared issues occurring in the UK is the sheer huge numbers of disabled people who are being “nudged” to commit suicide or are dying due to lack of food, appropriate medicines, accommodation that means they can lead independent lives, etc. The UK has gone from being one of the better countries supporting disability rights globally, to a pariah state quietly killing off its disabled & chronically sick populace. The mass media all but refuses to report on these issues, due to being in the main controlled by supporters of the ruling party. Only a few weeks ago one of these right-wingers suggested that it was appropriate that disabled folk and poor folk committed suicide in order to reduce the burden on the country’s economy - sounds similar to the polemic of 1930’s Europe and the USA, when it was euphemistically called eugenics and which led ultimately to the deaths of millions, a genocide. Currently the numbers dying due to the failures of the UK state are in the tens of thousands. This is termed ‘democide’. But when does democide become genocide?

The United Nations (UN) has already published three reports heavily critical of the UK’s approach towards the vulnerable in British society. A fourth report is due after the snap election, so too late to have any real effect on the electorate - assuming, of course, the media actually reports on the findings.

Europe has been asked by several disabled people’s organisations (DPOs) to investigate the deaths of we disablies. Up to now they have refused to do so. The UN can only write report after report. Meanwhile more disabled folk die needlessly each and every day. The relevant European Commissioner appears to have made no public statement about what is occurring in Britain. The European Union (EU) also appears completely unprepared for the tsunami of disabled/chronically sick people who will flood into Europe once BREXIT is complete, if not beforehand.

My academic background means I should have preferred to publish this blog completely annotated with supporting links to documentation, reports, statistical analyses, etc. Alas, I am not well enough to do so. However, my long-term readers know I do not exaggerate. Please do your own searches to check the facts.

The United Kingdom IS KILLING disabled &/or chronically sick individuals: family members, friends, neighbours, community members…… NO-ONE is lifting a finger to support us. I can only hope that this blog will survive to record what is happening here and that historians will once again record that the world stood by why innocents were killed by an uncaring state.

Please stand witness with me & my ilk!

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This blog-post is published as part of Blogging Against Disablism Day 2017 (#BADD2017). For this year's articles and previous years' archives, please see here.

 

Non-Governmental ESA & WCA Research

Ekklesia are researching how Employment & Support Allowance (ESA)‬ & the notorious and much-hated ‪Work Capability Assessment (‎WCA)‬ might be reformed or replaced. To this end they have devised an online questionnaire. Most of the questions are multi-choice with optional boxes.

I only wrote one long answer in respect to how any future benefit ought to look. My answer for Q. 30:

"I think it should be far more tiered, with the more points you get the higher the benefit awarded in order to account for extra costs - or if not tiered then with the addition of non-refundable grants. For example, someone with impaired mobility should be given an award towards a wheelchair and with each additional impairment an extra grant; someone who is sight-impaired should be given a grant to cover the costs of technology. At the top would be quadriplegics awarded grants to cover all necessary equipment.

Alternatively, the State should have a centralised purchasing body in order to save money through mass purchasing. Or a mixture of the two, so if someone wishes to pay more for equipment or does not want the State-offered product, they are free to choose.

Those requiring care, ought to receive additional components to cover such costs or the State ought to be obliged to pay for necessary care as in Sweden, for example. The additional benefit to society is the creation of employment opportunities and thus more folk boosting the economy.

There may also need to be a way for folk to receive grants or extra benefit to access private health-care which the NHS will not/cannot provide. E.g. I need physiotherapy, which I have to pay myself, as due to very variable conditions I cannot keep appointments, thus the NHS refuse to provide. Similarly, I cannot access mental-health support, etc."

If you have been through the WCA-process, please do help out with this research. One is given plenty of opportunities to save and go back at a later time, if one so wishes.

[Image description: Ekklesia logo ©]

Global Endemic Plague

Imagine if the total populations of:

Vatican City

Gibraltar

San Marino

Monaco

Liechtenstein

Faroe Islands

Guernsey

Andorra

Isle of Man

Jersey

Northern Cyprus

Iceland

Malta

Luxembourg

Montenegro

Cyprus

Estonia

Kosovo

Latvia

Slovenia

Macedonia

Albania

Lithuania

Moldova

&

Greater Manchester (England)

were struck down with an illness and could not work. What a terrible effect this would have on their communities and economies! These are the kinds of figures we are dealing with on a global scale of the numbers of individuals struck down with my infirmity. For those afflicted, their families, loved ones and communities have to care for them. Worse still: the ill probably do not receive, unless very fortunate, appropriate medical care let alone nursing support. The medical establishment in most countries all but ignores the illness and next to no research is executed into finding the cause/es let alone possible treatments.

The illness is more common in the United Kingdom than Parkinsons, Multiple Sclerosis, Cystic Fibrosis, Motor Neurone Disease, and equal to 75% of those affected by all cancers.

Imagine if your government banned you from donating blood or organs, even after death, but then colluded with the medical establishment to dismiss sufferers as only needing cognitive behavioural therapy (C.B.T.) and/or exercise to get better, despite the evidence demonstrating that these do not work.

This illness is Myalgic Encephalomyelitis or M.E. We need help and support now!

Every year the month of May is designated #MEAwarenessMonth and 12th May is #InternationalMEAwarenessDay to co-incide with the birthday of Florence Nightingale, one of the most famous sufferers.

Please consider googling "UK ME charities" and making a donation or even offering your time and service by volunteering.

And yes, whilst I have some good periods, most of my life for the past several years has been abed. The following description very much describes my quotidian experience of the disease. (Apologies to the visually impaired for not transcribing - it's very long!) 

[Image courtesy & © MEAwarenessPics]