Why being called a medical “enigma” or “puzzle” is not helpful

A blog post on being a medical enigma, how it feels to be labelled as such…

craftyinsomniac

A few days ago I was talking to a friend of mine (who also blogs and can be found at
https://danonwheels.wordpress.com/) and we got onto the subject of doctors, I had had a particularly unhelpful doctors appointment where 95% of my issues and concerns had been dismissed as something that she couldn’t do anything about, now I’m not saying that my GP isn’t good as she is but as usual my complex medical conditions leave her (like me) with nowhere else to turn to get help. Now while this is more than a little annoying it seems it is a regular occurrence, not just for me but for pretty much every other disabled person I know. We were discussing this further and the term “medical enigma” and medical “puzzle” came into it, both of us have heard this on many many occasions, and on those many occasions we had…

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The Taboo Around Disability And Sex Limits Everyone

Same Difference

There remains a heavy taboo around sex and disability in our culture. Research by the charity Scope found that only 7% of non-disabled people have dated a disabled person, while disabled young people are let down when it comes to sex education, often receiving none at all, or nothing appropriate to their needs.

The writer and activist Penny Pepper, who writes extensively about disability and sex, including in her erotica collection Desires Reborn, told me: “If disabled people aren’t having sex, they would like to. And the reasons they’re not are overwhelmingly to do with the barriers in society. I’ve known quite a few disabled people who [because of this] have resigned themselves to never having sex.”

This isn’t just wrong because of the obvious: sex is fun, enables procreation and for many people is vital for wellbeing. It’s also wrong because it’s part of a…

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Grieving daughter handed her mother’s ashes to ESA assessor to prove she wasn’t ‘fit for work’

Grieving daughter handed ashes of dead Mother to DWP assessor who visited to see if the Mother was fit for work…

Politics and Insights

A grieving daughter furiously handed an urn containing her mother’s ashes to a benefit health care professional who turned up to assess if the dead woman was fit for work, following an inexcusable and heartless blunder by the Department for Work and Pensions. 

Louise Broxton had suffered a host of neurological problems for which she received welfare support. She tragically died from lung cancer at the age of just 47 in August.

Her daughter, Hatti, immediately informed the authorities of her mother’s death and all her benefits were cancelled. After initially saying the information had been placed on file, however, some seven months later the Department for Work and Pensions sent an assessor to the door of her home in Wolverhampton to see if Louise was “fit for work.”

Hatti, a prison administrator, said: “I’m so upset and angry about what’s happened.

“It’s our government that has done this…

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Stem Cell Treatment ‘Game Changer’ For MS Finds International Study

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Doctors say a stem cell transplant could be a “game changer” for many patients with multiple sclerosis.

Results from an international trial show that it was able to stop the disease and improve symptoms.

It involves wiping out a patient’s immune system using cancer drugs and then rebooting it with a stem cell transplant.

Louise Willetts, 36, from Rotherham, is now symptom-free and told me: “It feels like a miracle.”

A total of 100,000 people in the UK have MS, which attacks nerves in the brain and spinal cord.

Just over 100 patients took part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paolo in Brazil.

They all had relapsing remitting MS – where attacks or relapses are followed by periods of remission.

The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.

The patients…

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Three Hundred Thousand ESA Claims To Be Reviewed After Latest DWP Error

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Tens of thousands of severely disabled and ill claimants are set to receive backdated payments of up to £20,000 after being wrongly underpaid for years by social security officials, the government spending watchdog has revealed.

An estimated 70,000 claimants were underpaid about £340m between 2011 and 2014 after being transferred from older benefits on to employment and support allowance (ESA) during a government overhaul of incapacity benefits, the National Audit Office (NAO) said.

The error occurred when officials at the Department for Work and Pensions (DWP) failed to follow their own legal guidelines governing the transfer process, meaning that in many cases they failed to properly check claimants’ full entitlements.

Meg Hillier, the chair of the Commons public accounts committee, said: “The government’s shoddy administration of ESA has resulted in vulnerable people being deprived of thousands of pounds they were legally entitled to. The NAO’s report shows the DWP was…

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BBC One To Screen Oscar-Winner Silent Child

Looking forward to this. Will be recording it as well.

Same Difference

Oscar-winning British short film The Silent Child is to be shown on BBC One on Good Friday, giving UK viewers the first chance to see it.

Written and directed by ex-Hollyoaks stars Rachel Shenton and Chris Overton, the 20-minute film tells of a young deaf girl who struggles to communicate.

Maisie Sly, a six-year-old girl from Swindon, plays the title role.

She travelled to Los Angeles earlier this month to attend the Oscars and see her film named the winner.

Shenton, who is from Stoke-On-Trent, was inspired to write the film because of her own family’s experience.

When she was 12 her father went deaf after receiving treatment for chemotherapy.

She learned sign language and became a qualified British Sign Language Interpreter and ambassador for the National Deaf Children’s Society.

She and Overton, who is now her fiance, cast Maisie after conducting a nationwide search and auditioning 100 children.

Millions…

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Animation by my publisher – Bloomsbury

Which me am I today?

I really wish I could remember when the lovely people from Bloomsbury came to my house along with the two lovely guys from the animation company……..but I can’t…It must have been before Christmas as the animators were kind enough to send me the original prints used in the animation, which I framed and gave one each to Sarah and Gemma for Christmas.

I do remember having a wonderful day and laughing lots…..

They wanted to produce a simple yet beautiful animation to promote my book, and beautiful it certainly is, especially since my girls have become 2 cartoon characters within it🤣

Well we had to keep the animation under wraps until this week, which has been so hard that I had to delete the email with any mention of it so it wouldn’t pop into my head.

Secrets are usually very safe with me, for obvious reasons, but I often…

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Dreams or Reality….?

Which me am I today?

After a wobbly few days I thought I’d share this with you…..

Recently I’ve found it increasingly confusing to decipher what’s real and what’s been dementia playing tricks….

I remember pre dementia, waking up after a vivid dream, thinking for a minute and then realising it was a dream. Now, however, I’m never sure. I have to find the proof now to separate fact from fiction. I’ve always ‘heard’ things that aren’t real – the knock on the door, the tap on the window with no one in sight.

One night I lay awake and heard a cry of help from someone who sounded like my daughter Gemma. She was shouting ‘mum, mum’. There was knocking on my door. I then heard a car door slam and it drove off. It all happened so quickly but when I looked out of the window it was silent, dark and still. It…

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The DWP Is Happy To Lose Cut Price PIP And ESA Appeals

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With many thanks to Benefits And Work.

A briefing document prepared by the DWP for work and pensions select committee reveals the scandalously small amount of money the DWP spends on carrying out mandatory reconsiderations and preparing appeals. It also explains why the DWP are happy to get personal independence payment (PIP) and employment and support allowance (ESA) decisions wrong so often.

Cut-price submissions
People often argue that it must be costing the DWP huge amounts of money to process so many mandatory reconsiderations and appeals and that it would be cheaper to just pay the benefits to claimants.

In fact, it turns out the DWP can knock out a reconsideration decision for under £40 and an appeal can be done for under £100, the cheapest being in connection with claimants being forced off DLA and reassessed for PIP.

Figures published in a document entitled ‘Work and Pensions Select Committee…

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