Showing posts with label Questionnaire. Show all posts
Showing posts with label Questionnaire. Show all posts

Monday, 12 October 2015

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 ©]

Tuesday, 1 September 2015

Medical Support for the House-bound

Last week I was reminded that Trafford Healthwatch are running a survey:

Healthwatch Trafford have today launched a survey to look at how people with ME /CFS experience health services in the area.

[undated, from April 2015]


According to MeManchester:

WHO IS IT FOR?
 For anyone in England with ME or CFS, even though it says Trafford.


Please complete this questionnaire, if you are able; for, the more responses, the more the likelihood that Healthwatch can and will take action.

I fought for two years, backed by my G.P. and my hospital consultant, to get a support package off Trafford‬ PCT - who did everything they could to impede my success. As I understand it I was only the second person ever to succeed with them.

The now defunct Manchester community nursing ME/CFS‬ support team (sorry - cannot recall their actual name) visited my home, as I was and am classed as "severe" under the ‪‎NICE‬ guidelines and by my hospital consultant. They helped me audit my energy usage and suggested actions I could do to help myself. For example, I still have a chair on the stairs landing so as to take a rest part way down, rather than trying to do in one go. I still have slogans mounted in my bedroom to remind me of various actions that due to dyscognition and memory issues I frequently forget.

My consultant runs specialist ME‬ support clinics at the hospital I attend annually. Alas, due to the severity of my condition - I am for the most part housebound with occasional supported outings - I am unable to access those clinics. I am not in the "most severe" category of those on drips and so forth.

I do think more needs to be done for housebound sufferers, not just of‪ Myalgic Encephalomyelitis‬ but also Lupus‬Fibromyalgia‬Arthritis‬, etc.