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TOPIC: PIP success !! Woohoo

PIP success !! Woohoo 1 year 2 months ago #4073

  • Supergran
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I took on the local ambulance service. I contacted the manager and wrote him a letter basically asking for more information for paramedics. Check this out were you live...in glasgow there is a system called the Key Information Sumary on the computor and it was available to all medical front line staff. Check with your GP and contact the local ambulance manager and ask if it is available to his staff. That is the start line it took some time and the manager did his own research on dystonia then produced a booklet which went out to the ambulance stations with a covering statement which said 'you have a patient in your area with dystonia please read the enclosed and familiarise yourself with this condition.
It has had a good level of success here so I wish you good luck!

I also want you to be aware that the new thing here is that a person presenting at hospital with dystonia symptons is being assumed to be a drug user/, I have done the research and it would appear that cocaine and not heroin itself but the stuff it is cut with can cause a dystonic reaction which is different to true dystonia. I have now taken this on and written a letter of complaint asking for dystonia awareness to be raised to a more reasonable level so that when a patient presents at hospital it is not assumed that the person is a drug user, There is an acknowledgement of the complaint but no answer as yet...watch this space!

Good luck and it would be good to see how you get on should you decide to challenge the system. I feel that if we dont then nothing will change.

God bless
christine xxx
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PIP success !! Woohoo 1 year 2 months ago #4074

  • nrps43
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I have an alarm system with council - life line and a key safe. They tell the ambulance service I have had a seizure which creates a category A call. Most crew have not heard of paroxysmal Dystonia which is why they tell them seizure.
The problem come when I have had an attack outside the house.
I wear bracelets saying Dystonia on them, but they often don't notice them.
As I am a regular visitor to A&E a lot of the nurses and doctors know me.
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PIP success !! Woohoo 1 year 2 months ago #4075

  • Supergran
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I was the same with regular visits to the a&e dept but recently my nearest hospital has changed to a much bigger affair in Glasgow and we have staff from other hospitals etc whose only knowledge of dystonia is associated with street drugs. Its horrendous and not much sympathy or empathy to be had any were. There is an expectation that as a dystonia patient allowances have to be made for staff who see far more drug users than they do dystonia patients and so we are to in some way be grateful....not quite figured that out yet! and at best I find it offensive and insulting. If you followed through with that does it mean that above a certain age you automatically have dementia/Alzheimer or if you are under a certain age does it mean your problems are due to over indulgence of alcohol! surely we have the right to be assessed on an individual basis and not grouped together with what the doctor feels he can cope with! At the end of the day surely the question...what happened to bring you into hospital is appropriate?...it used to be!

Sorry am on such a rant right now am in the middle of a dystonia crisis and am struggling to manage asthma, dystonia and a chest infection all side by side, with the chest infection having the potential to be silent pneumonia. In the last 24 hours I have had the input of 2 contacts/appointments from my own GP and 2 emergency contacts to be able to stay at home because my last trip to hospital was so traumatic I cant face going back. I am very blessed with a fabulous GP.

Things are a bit more settled in that my lungs feel a bit better and I am breathing easier, I have slept for 14 hours today with exhaustion and the knowledge that I know how much I have pushed my luck with this but at the same time I can not praise the GP services highly enough for the support and understanding and for having the courage to allow me to stay at home even if it did mean contacting them every 3/4 hours they have been amazing.

Sorry for the rant. I have made a complaint and asked for dystonia awareness to be raised in the department and feel that am not confident enough to subject myself to another drug test before I get treatment for dystonia, especially as the hospital has been caring for me and my dystonia attacks for years!

All the best
Christine xx
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PIP success !! Woohoo 1 year 2 months ago #4081

  • caddy24
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I am considering applying for PIP and just wanted to share my story. I retired from the NHS this year due to cervical dystonia, over the past five years every possible adjustment had been put in place to support me in continuing to work, however after a period of long term sick last year due to continuing spasms I could no longer use a pc, could not drive (I worked in the community) could not even carry a bag due to weakness and spasms, could not look to the left, or look down to write . I was supported through ill health retirement scheme. My sick pay ended and I was claiming ESA for a few months, however, following my work capability assessment, I was told I was fit for 'some type of work ' my ESA was stopped, I did appeal but the decision was the same and I was told to claim job seekers allowance. I attended the job centre with my partner this week, the job coach did complete my application form but I was in so much pain I could hardly sign my name, since then I have spent the rest of the week laying flat and taking diazepam, I have obviously cancelled my job seekers claim and explained that if I can not even sit thru an interview to make the claim how can I apply for jobs, attend interviews etc. Surprisingly one of the jobs being advertised was for a PIP assessor and I was informed by the job centre that due to my qualifications I could apply for that!!!!!!! After reading these posts I am feeling more positive that Dystonia is at last beginning to be recognised by some health professionals as a long term condition. Xxxxx
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