The instance I wish to point out as to the way in which the disabled are fobbed off and treated without much thought as to the consequences of the 'authorities kind words of help & advice', I use that not towards the people that care for me within the NHS as they truly are helpful & I am able to open up completely to them without any hesitation, or maybe another term could be guilt or shame, I don't know.
My little story started off with Twitter when the group Epilepsy Action put forward a plea on this page http://www.epilepsy.org.
We’d like everybody with an interest epilepsy in the UK to do the following:
- Contact your local MP. You can find out who your MP is, and contact them, through www.writetothem.com
- Tell them that there’s going to be a reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) Bill straight after Prime Minister’s Questions on Wednesday 24th November.
- Ask them if they are going to be in the House of Commons chamber for Prime Minister’s Questions. If they are, would they stay in the chamber for 10 minutes to support the bill.
- Tell them your experiences of epilepsy and epilepsy care. How does epilepsy affect you? How good or bad are the services for epilepsy in your area?
Epilepsy Action also asked if you heard back from your MP then could you tell Epilepsy Action what the response was, I cannot remember if I did or not, admittedly I have short-term memory loss, whether or not that is why I can't remember I don't know. Andrew Robathan replied and said how sad he was for my loss (my wife having died a few months earlier) and how hard it was for myself & my son, he also had the audacity to say how he understood what it was like to suffer from epilepsy as a great friend of his has epilepsy (this is where my writing might turn into a rant so excuse me), which makes me boil up a lot & makes sense as a spoonerised sentence to prove you are not homophobic that goes along the lines, "I'm not homophobic some of my best lesbians are friends."
Grrrrr... Inside I was going, background ammunition was needed to make him understand, a quick bit of research told me he was married with children, to say anything that would upset the innocent is just pure evil, but the ignorant, ahhh. My MP is primarily involved in issues with the defence, he has a military background. I took this & made a simile hoping he'd understand he'd made a total *rs* of himself by saying he understood about being epileptic, I said I understood what it was like to lose your legs in action protection queen and country as I have a friend that was in the army. Same logic, but it was on his field of expertise.
Suffice to say he didn't go but he told me Valerie Vaz did, he also told me I didn't understand the Bill.
I replied to him, unfortunately a bit red misted & I gave him a dressing down, unto which after I felt that he wasn't going to reply and the actual Bill et al had sank out of existence for me as it was a testing time coming and I knew this was so, all was focussed on me and my son.
Well imagine my surprise, well don't because it was more of a about blinking flip time I'd forgotten about this, when I got a photocopy of a letter addressed to Andrew Robathan MP from Paul Burstow MP Minister of State for Care Services (oh, short term memory comes from dyslexia which makes Paul Burstow's position read as Minister for State Circus)
10 Paragraphs
(1) Thanking my MP for correspondence about epilepsy.
(2) Apologies for me having epilepsy, that makes it better? And the difficulties it causes my 'family' and son, who is named as my whole family in correspondence, first hint of not reading the correspondence. Sorry to read of my wifes death, actually could have helped there by putting more than 1% cancer research money into the 5th highest killer in cancer, my wife & I thought she'd be dead 2 Months after diagnosis of pancreatic cancer, but we were so happy that we got 10 months. All she wanted to do was see her 'baby' turn 16, she 8 weeks before his 16th birthday. This is valid, Dept of Health made one woman in particular feel like she has (and still has) a yoke of lead around her neck because she was the one that was given the test 'results' to tell my wife that they were negative. If terminal cancer is negative then I feel that the Care Services need a lot of cash injections. He also understands that I am going through a difficult and painful time and I do accept he condolences as I hope he does mine, as to understand this time his wife/partner must be dead too.
(3) This is word for word as this is the only piece of correspondence pertaining to the original correspondence, not enough reading methinks.
I would like to assure Mr Smith that the Government is committed to improving services for people with epilepsy. I note his interest in the Epilepsy and Related Conditions (education and Health Services) Bill and as he points out it is due to have its second reading on 4 March 2011.
It is not a lot in the scheme of things. Committed to the point of not going to these meetings and saying it doesn't matter yet as this is a meeting to see if there will be a meeting later on, so why have the preliminary? Oh and punctuation, its should have an apostrophe as it is in the belonging to sense.
(4) Mr Smith (me under false name protect innocent etc) may be interested to know, NICE published guidance on clinical and cost effectiveness on new pills to help us all. IN 2004? I KNOW I WAS ONE OF THOSE TAKING THE THINGS AND HAVE SINCE BEEN TOOK OFF THESE MONEY SAVING NEW DRUGS!!!!! NEW SEVEN YEARS AGO! Does a new born baby go to junior school? According to Paul Burstow MP Minister of State for Care Services it would seem in his clock would say yes, reverse dog years?
(5) NICE published guidelines in 2004, help raise treatment, care and support. Website address.
(6) NSF I have found pledges it focuses on improving standard and quality of services for people with neurological conditions (here's something NOBODY has ever told me) and pledges that everyone with a long-term condition will be offered a personalised care plan. I have got this bloody condition for the rest of my life and my neurologist has told me so I believe the official term is chronic-epilepsy, it doesn't matter as I used to have grande mal, fits, epi's, but now the 'name' is tonic clonic. It's long term and I should have died on my 24th birthday after having a fit and going through my mum's front door in the middle of the day. The ambulance man told her I should've died with lacerations all over my head & blood from the bottom the stairs all the way to the bathroom. It shook my mum up especially when my cheek was numb, she told me to get my finger out of my head, big gash no nerve endings, but I'm not dead and the only way I know 100% that I have had a fit my own personal care plan is if I have bit my tongue ragged.
(7) Here we have notes on GPs getting £££ for caring for patients, under QOF guidelines it appears. Since being diagnosed 36yrs ago was seen by one GP and that was the one that referred me to my first neurologist. This is sending out lots of mixed messages to me and I am finding them hard to filter and get into my fingers to type.
(8) I apologise about my language here, but this is the clincher, the actual beast within the photocopy that tells me it is the unfortunate employees of these fuck-witted, shit eating, bastard self defecating, Cameron/Clegg cocksucking fucking insensitive air biscuit collectors.
It tells me about high quality information from NHS Choices, published in NHS Guide To Epilepsy.
It provides a guide with comprehensive info about symptoms, diagnosis, treatment, living with epilepsy, managing epilepsy during pregnancy & videos of people who live with epilepsy. Now the only one there that doesn't apply to me is the epilepsy during pregnancy. These are just more bits of the promoting, feel good, appeasing the fools that think they can get us to change our mind by writing to us replies I get upset by. Here comes a good one that defies all logic and I refuse to let certain people read this letter. It's the last sentence in this paragraph and I'll write it as it is here.
It also includes information on the risks associated with sudden unexpected death in epilepsy, and includes a link to the Epilepsy Action website, which has more detailed information.
There is a risk with death? Maybe Paul Burstow the 'Care' MP should have 'spoken' to Andrew Robathan the 'Defence' MP as he has some experience regarding the risks associated with death. However the information is obviously not for me as the death would be mine so he is expecting me to pass it on to a 16yr old boy who has just lost his mother. Unexpected death? WTF? So there is an expected death, thank crikey. It is also nice to know that the CARE Minister is pointing me into the direction of a government supported....Oh it's a charity...
He is the most evil thoughtless thing as there has not been any reading of the correspondences, or any read through the reply with any thought as to it going to an individual so much a league table.
(9) NHS Choices + QOF = statistics about the performances of NHS. That is all
(10) I may be interested to know the MRC is involved in several projects involving epilepsy, if I want to find out more. No I wanted to find out more of what you skimmed over in the 3rd paragraph. Basically if the voter wants to pursue it further the voter must do this then correspondence can resume. That's how it makes me feel and that is bad 'customer relations'.
Finally I hope this reply is helpful, polite and acceptable.
Then his signature, his name in bold letters.
But underneath yet another kick in the nuts
Approved by the Minister and signed electronically in his absence to avoid delay
He had time to approve it but not sign it how does this work, I am asking does the Minister actually read/dictate/listen to these letters?
If so then I'd start fawning to the max
no respec' to the Burstow
@robbsart
Thank you. I never knew what an air-biscuit was until now... I think I just re-qualified for DLA MRC on the basis of urinary incontinence. =8-)
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