Myalgic Encephalopathy (M.E.), DLA & debt

maytaurus

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sleepymy

chunky79 wrote: »

Uhm very interesting.

I have mentioned many times to my BIL that he may have ME. He also had a pituitary tumor 25 years ago resulting in the gland being removed. i wonder if it is an adrenaline issue with him i looke dat the ME site and foudn i could tick almost every box but as he has suffered fromt eh tumor alot of the doctors are reluctant and just blame that but that was over 25 years ago and surely its not just come about. he has suffered like this for about 8 years.

Does Anyone know a good doctor they can recommend?

From what I remember a pituitary gland tumour can cause ME symptoms, I'm not sure if they should stay after the tumour is removed though. Action for ME might be able to recommend good doctors in your BIL's area or give you the contact details of a support group who may have a list.

Love the t shirt maytaurus! lol

jehane

Hi Jenna

You should definately renew your DLA, the worst they can do is award you nothing. Just be honest on the form and preferably get help from an experienced benefit adviser to complete the form, me/chronic fatigue/fibromyaligia are all tricky to get DLA for. The other important thing to do is to ensure that your GP is aware of how your condition affects you - this is a mistake that many people make with DLA applications as the gP is the first person that the DWP write to when you apply or renew. If your GP hasn't seen you in a while they tend to assume everything is ok.

I saw that someone said to put down what you're like on your worst day - the new forms now ask you how many worst days you have in a week and the variability in your illness. If you have less than 4 bad days in a week then you may find your award decreases.

If you're on high rate mobility and you walk 10 minutes to work now, then it may be difficult for you to get this level of award on renewal.

Finally if you do get a lower or nil award on renewal consider getting specialist benefit advice regarding challenging the decision. Doctors are notorious for writing very little on the forms the DWP send out to them - and this causes a lot of claims to fail. With a good benefit adviser helping the person get extra supporting evidence some claims then then be awarded on reconsideration or appeal stage.

Jehane

jehane

Sorry forgot to say, also consider tax credits if you're not already claiming - as you get a decent disability element if you're working and on DLA - also can be backdated 3 months and sometimes further.

Jehane

Lindsey1948

Jenna, please do not feel guilty about claiming DLA. As another poster has put they do look at your worst day scenarios. I have a friend with ME, and she cannot fill her forms in and I have had training on filling DLA and AA forms in so do it for her. You must stress on the forms the reason for you not being able to do something is "because of the ME I cannot do .........." and I know it sounds a bit much but you must repeat this and any other reasons several times thoughout the form.

The two main criteria for getting DLA are these: 1. Whether you can prepare from scratch a meal for yourself, cook it using a cooker/oven, test whether its cooked and serve it up. No think about every single step this involves. Plan the meal, look up recipes to follow instructions, make a shopping list, Go to shops, buying the food, preparing the veg/meat etc, filing pans with water, putting in oven (meat) timing the process, checking if cooked, emptying pans of contents safely, taking meat out of oven, dishing meal up. If there are any of this you cannot do on a bad day, then you are entitled to at least low rate care. If you need someone to remind you to take medication/bath/drink/feed/help with bed needs then you would be entitled to middle rate as you have.
2. Your walking distance is no more than 300 yds BEFORE you start feeling severe pain or discomfort. Again think about this - most people with ME will say that they cannot walk more than a few steps without feeling discomfort, the fact that you struggle to walk for 10 mins to work, doesnt mean you are not entitled - because you may well be in pain from yourgarden gate. Do you get my drift?

The Disability Alliance produces a very good handbook for anyone to buy I think I pay about £17.50 for it but it gives all the rules and regulations in an easy readable format for getting any of the disability/pension/IS/IB benefits.
Hope that helps.

natzini

jehane wrote: »

Sorry forgot to say, also consider tax credits if you're not already claiming - as you get a decent disability element if you're working and on DLA - also can be backdated 3 months and sometimes further.

Jehane

Yup, it def is! Unfortunately OH and I 'earn too much' (supposedly!!) for WTCs, but it def is worth applying for, as they can only say yes or no.

natzini

Just thought I'd give everyone an update... went to see my (new) GP yesterday and they are upping my Thyroxine, hopefully that'll give my lazy thyroid a bit of a boost! I'm coming off of the Gabapentin and trying something else (not sure what yet) and I have more blood tests next week and will be referred to at least a rheumy (still hoping to see Prof Davies too). If people don't know who Prof Davies is, check out the link here.

jehane

For middle rate care you need to show that you need help throughout the day and that you need it frequently. For instance if you just needed assistance in the morning with showering, dressing getting out of bed, taking medication etc and then at night getting undressed and into bed and taking medication then this would not qualify for middle rate care - make sure that you include examples of things you need assistance with throughout the day - give examples of what time of day you need the help and then how often and at what frequency. Also put down on the form anything you struggle with but don't get help with for any reason as DLA can be paid out for help you need even if there is no one around to provide that help.

If you need help at work or special arrangements making for you put that down too - there are several sections where you can write in anything that you feel is relevant - for instance if you have a full time job but can only go into work 3 days a week because 4 days you're barely able to get of bed.

DLA mobility is not genarlly paid unless you can only walk 50 metres or less. If the speed of walking is incredibly slow or laboured then this will sometimes be extended. Do you walk for 10 minutes without stopping or do you stop and rest along the way. What's you're walking speed like. Can you walk that distance every day - or are you only able to walk it a few days a week. Even if you can walk for ten minutes a few days a week then put down on the form how you are for the majority of the week - so if 4 or 5 days out of seven you cannot do something, or you need help with something then this is what you put on the form.


Jehane

maytaurus

jehane wrote: »

For middle rate care you need to show that you need help throughout the day and that you need it frequently. For instance if you just needed assistance in the morning with showering, dressing getting out of bed, taking medication etc and then at night getting undressed and into bed and taking medication then this would not qualify for middle rate care - make sure that you include examples of things you need assistance with throughout the day - give examples of what time of day you need the help and then how often and at what frequency. Also put down on the form anything you struggle with but don't get help with for any reason as DLA can be paid out for help you need even if there is no one around to provide that help.

If you need help at work or special arrangements making for you put that down too - there are several sections where you can write in anything that you feel is relevant - for instance if you have a full time job but can only go into work 3 days a week because 4 days you're barely able to get of bed.

DLA mobility is not genarlly paid unless you can only walk 50 metres or less. If the speed of walking is incredibly slow or laboured then this will sometimes be extended. Do you walk for 10 minutes without stopping or do you stop and rest along the way. What's you're walking speed like. Can you walk that distance every day - or are you only able to walk it a few days a week. Even if you can walk for ten minutes a few days a week then put down on the form how you are for the majority of the week - so if 4 or 5 days out of seven you cannot do something, or you need help with something then this is what you put on the form.


Jehane

EXACTLY How can you answer these questions when you have ME and never know what you're going to be like from one minute to the next

jehane

maytaurus wrote: »

EXACTLY How can you answer these questions when you have ME and never know what you're going to be like from one minute to the next

Best thing is to keep a diary for a few weeks then use it as a guide to how many good and bad days you have - save the diary as evidence in case you want to appeal if unsuccesful.