Paperwork/research is piling up. Horrible but necessary paperwork. Today I pulled together relevant bits from various online Board minute meetings. Gotta try and keep the legal costs down, particularly given the way in which the Southern Health ‘muck about muppet’ tactics are rocking up the the legal costs. Exponentially.
[Fundraising update alert. Tomorrow hopefully…]
I trawled through reams of online stuff, screen grabbing relevant sections, pulling them into a word document. I was struck/’pleased’/relieved by the Non-Executive Directors’ sensible contributions/interventions which I ‘live’ tweeted while I worked. Whistling and all. Glimmers of sense/sensibility in a beyond nonsensical experience.
Then I got to this. Section 26.2. Board minutes from 29.10.13. Relating to the CQC inspection report of STATT and other recent CQC inspections of Southern Health provision:
Does an NHS Foundation Trust with specialist learning disability provision really (really?) need to learn about epilepsy care and implement an epilepsy care pathway? One in four learning disabled people have epilepsy. I know this and I ain’t no medic. This ‘learning’ is shared across other divisions?
[howfuckingcrapshitecanthegobshitewankstainsbe?] This for me is like a state run nursery leaving a four year tot on the M25 and ‘learning’ that moving traffic can be catastrophic. Then sharing this ‘new learning’ among other state run nurseries.
We’re not talking proper risks here. Potentially life threatening operations, life limiting conditions and the like. We’re not talking anything really. Other than the most basic of ‘health’ care.
LB should never have died. And an NHS Trust should never legitimately be able to say that sharing an epilepsy care pathway is “learning”.
Oh wow, the tidal force of underwhelm gets stronger….I completely agree it’s not learning, but for this shower of muppets, their starting point was obviously soooo low it no doubt is. I’m sorry to be so bloody negative all the time, but this is shite, seriously shite. How can it be acceptable?
A few years ago I read a book by Kay Gilderdale, who a few years ago was on trial for the assisted suicide of her daughter Lynn, who had very severe ME for 16 years. On several occasions, her treatment was messed up and her condition got far worse because doctors did not believe in ME and insisted on treating her condition as psychological.
On one occasion, she went in with both gastric problems and a nasty rash on her back, and the doctors ignored her gastric problem and insisted that her rash must be “dermatitis artefacta”, or self-induced skin inflammation, which they surmised must have been caused by her mixing her skin creams and rubbing them round in circles. The family could get nowhere with them so they took Lynn home. A while later, they read in a cat magazine that you could pick up various infections from cats, including ringworm, and a picture of that looked a lot like Lynn’s rash.
I told this story to people I know, neither of them doctors (one a teacher and one a patient transit ambulance driver, who had worked with Lynn) and both told me that they could spot ringworm. It was quite a basic mistake, caused by prejudice.
You have the crux of the matter – epilepsy care or rather the lack of it. Only 2 centres of expertise in the country Queens Square and the Walton Centre in Liverpool. I am 30 years ahead of you in this, and the level of care and knowledge is worse than it was in the 60s Everyone should have an epilepsy careplan they carry with them the whole time, together with emergency AEDs. I ve written before bath epilepsy medical negligence. Keep fighting dont let the bastards get you down
My mind boggles at what an Epilepsy Care Pathway might look like/read like. Does it start or end with Don’t leave unsupervised in the bath? Are they likely to discuss with patients, carers? So individuals can point out where it might be a wee bit off?
My daughter’s fits are now just about controlled – but we had about 15 years of uncontrolled, atypical nocturnal fits. A nightmare, and it wasn’t made easier by a breezy, no big deal approach from some. Sadly, I know of two other young people where lack of simple awareness and proper care contributed. So heartbreakingly sad.
Hi Sara, I think your blog needs a ‘BASTARDS’ button as well as a ‘Like’ ! Epilepsy – always the poor relation it seems. The ‘Stamp out Stigma’ campaign went a long way to raising public awareness, lots of hard work went into training staff in schools. Disgraceful that no apparent advances have been made in the training of staff caring for epilepsy patients (allegedly?) rant rant .. Xx
A lot of hospital departments seem to think that if a person is admitted for something other than epilepsy per se, then it’s not the department’s business to manage the epilepsy. As though a person could just stop being epileptic for the duration of their stay on the orthopaedics (or whatever) ward.
I expect people with other potentially life-threatening conditions like insulin-dependent diabetes or heart conditions have similar experiences.
Care – never mind holistic, individualised care – appears to be a mirage of fable in many settings.