Ramsays Disease
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Info from the ME Association about the New Social Care Act

meassociation.org.uk/2015/0...

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I am interested in seeing how this will fit with the continuing cuts in care services brought about by reduced budgets of local councils. The ILF ( Independent Living Fund) will be scrapped, taking away a national standard that will be replaced at best with a post code lottery of services where there is any provision at all.

Keeping councils up to the mark will involve legal challenges from some of the weakest most vulnerable members of society.

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I have not read it all. I think everyone who is not in the upper middle class and has a cushion of a few thousand pounds plus a good paying, secure job and other assets, is set for a bumpy ride in the next year. We are shamefully funding those who are already wealthy in our society and allowing the most vulnerable to be reduced to grovelling for crumbs.

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Services are already ran as though it was a third world country rather than one that is in the top eight of world economies. I doubt the finances will be released that could change this anytime soon.

legislation.gov.uk/ukpga/20...

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Thanks, very helpful. Just about to be assessed...

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We may be in the top of the world economies, but the economics are not being shared by any stretch of what is possible or equitable.

I feel we are being slowly but surely pushed outside of society, from the bottom up. The poorest and least well educated and sickest and oldest first, the next poorest, etc. after that.

Look what has happened in London. Ordinary people cannot afford to live there at all, or even in suburbs of London, as far as I can see. As developers buy up council properties and other community dwellings, people are calling it social cleansing, forcing people to leave the places they love and have friends and family, schools, churches, etc. from even 4 or more generations back. It's so sad. I am nowhere near London, but it is similar where I live. People who work here as carers or labourers and other service jobs can't afford to live here.

There's a programme this week on BBC Panorama Mon April 20th.. (just saw in next weeks tv guide) on The Great Benefit Housing Scandal.

I am seeing the effects of cuts to advocacy programmes. I've been referred from one to another to another agency and charity, ending up with one that is completely and utterly impotent and unable to even begin to address my problem of finding a doctor who will at least treat some of my symptoms.

I tried and tried NHS Choices lists and survey results for all the GP surgeries in my area... spent hours and ended with nothing as you just cant tell anything about the doctors from those, other than an overall score of generally okay to good or generally average to poor for everything from opening times to friendliness of reception staff and availability of parking.

As far as doctor communication with the patient and listening and providing good care, those seem to count for only a small percentage of the compiled totals from patient surveys. I wound up more confused and my cognitive problems just going mad from all the effort to learn how to read results and checking from lists, websites, doctor's individual (if any were there at all) information...

I've posted all over the forums and in support groups. Nobody seems to know of any good doctor in my area, or if they do, are not saying.

I don't think I'm expecting much to have a urine culture done when I've experienced unusual symptoms over the past several months and am in a lot of pain, or to have an ECG to determine what is going on with my dull chest pain that is getting more and more frequent and lasting longer.

I despair to think what less able people are going to end up with. So much suffering.

I subscribe to a variety of patient forums, websites, twitter news of ME and Fibromyalgia related blogs etc. I sign every petition that seems to be useful, retweet, repost.

But I wonder if there is any hope in sight for the UK and NHS where help for us is concerned. They don't seem to take notice of the new studies that are showing lots of biomedical evidence and the IOM guidelines, etc. Does anyone know if they are showing any signs of changing from the psychosocial model?

Anybody got a good idea how we can get things moving in the right direction for ourselves?

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I had missed out on that info thanks Seascape.

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Thanks for that link. There are some short video clips on the BBC website related to this. I watched a couple. One lady age 87 getting no care help at all and has multiple problems with daily living. They tell us we are entitled to be able to cook or have meals provided, to be able to wash or have a carer help us wash or a bath/shower adaptation, and so on... but it looks like wherever she is, none of this is being provided for her despite her being severely affected by poor eyesight, poor hearing, arthritis, and more.

Post code lottery is about right.

At the opposite end, they have a clip of a man who has got lots of expensive equipment installed in his property so that he can get around without difficulty and is provided with alarm system so that any problem can be attended to immediately. He is in Leeds, which seems to be a leader in this effort to keep people as independent as possible and out of care homes.

I'm a bit afraid that those of us who become more disabled with ME or Fibromyalgia, especially at younger ages than the average care home resident (80s and beyond) are going to wind up in psychiatric care. This does worry me as we are still being treated as mentally/psychologically disabled or malingerers rather than physically.

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More care when I want some help because still have habit of waiting until crisis before asking. Allowing carers into my kitchen breaks my heart, my life is gone when I must suffer this.

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SophiaG, I absolutely understand that mindset (of waiting til crisis before asking). Yet reached the point of realising I need it, so recently asked for a health & social care assessment. My hope is that accepting some support will aid some return to better health...so hopefully not a 'forever' situation...

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I had two assessments before but was not given funding for a carer on the first two, as they said they could only fund people who were classed as 'severe needs'. On the last one, a few months ago, I was given funding for daily carer visits of one hour in the am and 1/2 hr in the late evening.

I didn't think I could handle having people come in every day twice a day. My carer manager was very very nice and fully believed all I told her. She understood my difficulty adjusting and we did it somewhat gradually, with me being able to say what I felt would be best for me.

All things considered, it has been very good for me. To live in a clean and tidy and organised way once more is wonderful. I hated not being able to keep things clean and tidy. It drags you down, makes you feel you are failing, leaves you feeling less than human.

It is such a mood lifter to have a cheerful and kind carer and they are worth their weight in gold, so if you get a good one who does the job well, try your best and insist on holding onto them if yoou can... at least as a 'main' carer to keep continuity.

I get my care from a private company and it is arranged to be paid for by the care fund from my council, with me topping up the difference between the charge the private company has and the amount allowed by Soc Serv. I can do this from my DLA money, and it is according to means testing that the Soc Serv. do when arranging it.

Also very helpful was the OT who came even when I did not get paid care, a few years back. She provided a number of excellent adaptations, liasing with my housing association, and things like perching stools, easy on and off taps, a four wheel trolley which is so useful for many things.

I now use it as a mobility device, as I prefer to use my legs as much as I can rather than a wheelchair, and I can put much of my weight on the trolley as I move about from room to room.

I still get irritated when I can't find something n the kitchen or when my own system is not adhered to. You can't expect perfection, but they do try to do it as you tell them you want it done. I still rearrange the fridge and the cupboards sometimes. They don't complain when I do it, and it helps me feel i am still mistress of my own kitchen.

I KNOW I would not have got to the point of being 'severe needs' if I had been allowed this help several years ago. It is good to have someone to make an omelette or a sandwich, to check you have taken your meds... you know how sometimes brain fog makees that tricky, and run an errand, take deliveries and put them away when the groc arrive.... and many more little things they can do.

I wish you all the best and hope that you will persist in asserting what your needs are and what will help you most until they are met at least in part. I don't think you will regret this, although it wil be a challenge and require mental and emotional adjustment.

Once you do adjust, I think you will see there are many benefits and remember we all need help sometimes. We can't do anything about that fact, but we allow others to help us and feel grateful. The interactions are heart warming if you have a good carer. I hope you will.

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Thank you so, so much Budgiefriend. It really helps me to read your reply. I had the first 'informal' assessment and the next stage is a 2-6 week evaluation process.

I do feel quite daunted about the number of interactions, as even getting up to open the door feels a major 'event' (physically) for me. I live in these apartments which have a rather strange fob thing to open up the gate...a bit too expensive to get copied but I'm sure there'll be a solution...

And yes, I absolutely know the feeling of things mounting up, simply undone...not through lack of wish or will power or motivation, yet simply because all energy is going on basics- and even then not actually managing...(to understate it !) So it would be tremendous to have help and gradually get sorted.

So I wish to thank you Budgeifriend for all your sincere and helpful reply. I feel very encouraged :-)

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I am so thrilled that you found my reply helpful. I hope you will keep us informed as you go through the next steps and hopefully get the help you need.

Hugs from me

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