PIP Attending Medical

MECFS_2

In 2010 I attended my DLA medical with a support worker from MIND. Although my disabilities are physical the impact on my life had been so strong I'd become depressed.
Who is best to take to a PIP medical? I live alone and rely on care from friends. £82 a week of higher rate care on DLA does not buy me a full time carer! I am worried about who to take to the medical. Is there somewhere or some organisation that I can ask for someone to come with me who is used to these situations? I could take a friend but they wouldn't know what to look out for if the assessor asked leading questions or what happened last time in 2010 said things like ' you don't need night time care do you?' and then just moved on before I could answer. A supportive person or advocate who understands these situations would be useful. Many thanks in advance for your replies.

Cyclamen

Hello

Have you seen the guides written by the various CFS/ME charities for PIP assessments..?

Do you have a local support group?
Are there any disability advocates in your area? DIAL might have some links.
Are you near an independent living centre.. charity organisations who provide free unbiased advice on living with chronic health/disability.

Most of the big ME charities have facebook pages and the option to get an anonymous post, so you could ask where your local PIP centre is and if there are any local advocates.

There are also a coupe of big cfs/me community forum pages that may have some answers for you.

I had a home assessment.

You mention you can travel short distances but if you need significant 'heavy duty meds' to sit up and you mention these in your other posts. Will the sitting around waiting, appointment and travel home (I am assuming public transport but maybe you drive) have a negative impact of your symptoms, pain and safety? If so perhaps consider asking for a home assessment. Would your GP back this?

Sadly I have found it very difficult to find an advocate from an outside agency who actually understands my limitations. You may be better off with a friend who you have briefed to ask the assessor to give you time to answer, allow a rest etc.. I did my early assesments on my own at home with PA in the house in another area but now my husband sits with me.

I always have a highlighted chart of the eligibility points showing where I think i fit and briefly listing evidence to act as a prompt but have never needed it.

Sometimes a 2 week (or longer) symptom/activity diary can help explain things..take a copy to give to assessor if you havent posted one.
I also have an accidents book where i date and list when things go wrong and what if any help i needed.. burns, letting pans boil dry, falls, getting trapped behind heavy doors etc..

I hope it goes well and you get the award you should.

pollyanna_26

I've just read the original post . Have you tried contacting MIND?
As you have had support in the past you may be able to have someone to support you through this claim including any assessment .

As I said elsewhere it's a priority to make the calls to try to find that support .

Some very good advice there from Cyclamen , the internet is such an amazing source in so many ways .

polly

MECFS_2

Thanks for your posts. Yes I will contact MIND to see if they will offer someone to come with me to the medical. I will also contact my local ME support group to see if I can arrange for someone to come with me.

Cyclamen- I have read the Action For ME Guide to PIP. However I found the detailed guides provided by Benefits and Work and Disability Rights UK more useful as they go into far more detail. I guess so long as you know the symptoms of your illness/disabilities and how they effect your daily living/mobility the principles are the same. I would get someone to drive me to the assessment as trying to use public transport is out of the question.

Cyclamen

ME/CFS

I'm glad you found guides to help. I have the unpopular view that although the info in benefits for work is sound its far too wordy and too much history/politcs stuff to wade through.

We share a condition.. I use the MEassociation stuff (£3) and the MS society free stuff (not my illness but similar limitations).

Are you aware that assessment centres will fund taxi's for those who can't use public transport. That way you can be dropped right by the door. You have to get approval and pay the fair but can reclaim it. However a friends car with all your cushions, pillows and supplies may be more convenient.

I know there are a lot of horror stories out there from when things go wrong (and these posts need to be shared so support can be given) but please remember that for some of us the system does work and go right first time.

I had a PIP assesment last Autumn (at home)the assessor was a nurse who understood CFS/ME as a neurological disease. Yes I asked her qualifications and if she knew anything about my various conditions, but in a friendly way. My assessment went as well as these things can. I hope yours does too.

The other thing I do is answer questions with a No not reliably/safely/repeatedly or in a reasonable time if I can't do something rather than 'yes sometimes'. Just incase after yes they stop listening ;-)

MECFS_2

Cyclamen I know exactly what you mean about the Benefits and Work guides! Although the information is sound they are very wordy and can make it hard to remember all the descriptors and their relevance to my condition. Do you recommend the ME Association stuff for helping to apply for PIP?

Cyclamen

Hello ME/CFS

I joined the MEassoc shortly after diagnosis in 2009, I still subscribe. Honestly I don't know much about the other ME charities, I follow a few on facebook but can't afford to join them all.

I like the MEAssoc leaflets, some are a bit 'washy' but most are excellent. It used to be a phone call to order or writing a letter but you can now download them after paying online which is far easier and doesn't matter if you spill a cuppa on them.

I think the ESA and PIP leaflets are good. At the begining they are the only ones I used (although it was DLA back then). I help others (friends/family) with their forms and my father too and although he doesn't have cfs/me the explanations helped me complete his form.

My husband purchased a benefits and work membership a couple of years ago so we could see what it was like..and I agree the forms are excellent when you wade through them, but its too much info for me and after reading it through with a highlighter over a number of days I didn't use it again.

I have a quite a large collection of the MEassocs other leaflets that help explain things. Struggling today so my husband downloaded the help sheet for Orthostatic Hypotension which has been reassuring and given me a much needed kick to do things a bit differently.

The purple book free with membership but otherwise about £8 i think has been really useful to me with understanding the science, symptom management and meds. It's written by Dr's for Dr's so quite 'heavy reading in places' but it discusses symptoms, possible medications, research etc.. my GP has used it a few times when i've turned up, apologised for coming with 'stuff offline' and asked him if he thinks it might be worth trying X or if Y might explain a symptom as i wildly point at the page full of post-it notes and questions..

There is so much 'squabbling', 'old science' that has been debunked and info out there in the MEcommunity it can be hard to find your way. However I think all the charities want to help their members so it doesn't matter too much who you plump for. I was given an AFME guide to pacing by the local clinic which seemed well written but said pretty much the same as the MEassoc so its just personal choice.

I also use one of the online cfs/me forums for support, friendship etc and find sharing support with others who have the same 'label' a really useful and reassuring thing along with having made some excellent friends.

Hang in there and good luck with your assessment

MECFS_2

Hello Cyclamen,

Do you mind me asking what PIP award you achieved? If you do no problem . I'm currently on the higher rate for both DLA components and naturally concerned about the PIP transfer as I can't afford a drop in income. In addition to ME/CFS I have Fibro, certain severe urology problems and a spinal injury which is now inoperable and means I take a lot of medication. I know when claiming DLA it was best not to mention variability of condition. However I believe this is different under PIP. How would I word 'variability' of my ME without diluting my claim?

Cyclamen

Hello ME/CFS

I'll drop you a message via this site as i'm not really that anonymous.

I have always told them my health, symptoms and ability fluctuates. There used to be a 'tell it like its your worst day ever' mentality an dwell I couldn't subscribe to that otherwise in my eyes everyone would eb entitled to higher everything.

Focus on the reliably, repeatedly, safely and timely. There are explanations and definitions of these terms in most guides.

Look at the points criteria and decide where you think you fall.. i started by highlighting 'not-so-bad' day in pink and 'normal for me' in green and 'rough patch' in yellow.. quite often the highlights were all in same place. I don't have good days, many of us dont just days that are not as bad sadly I am always poorly.

Wording variability.. i use their language.. keep going back to reliably, repeatedly safely, timely

I am a stickler for honesty, but also believe in giving them examples.

e.g a question about bathroom equipment
I say I can't get up of loo without grab rails reliably or safely. That last time I tried I ended up on floor at my Dad's house so he's added a rail for me. That I sit on a stool to wash my hands most of the time, occasionally I stand but wobble and it isn't safe. Very occasionally I can use a 'non railed' loo but it is not something I can use whenever nature calls and it comes with risks. I tell them I don't lock the door so its easier for help to come (whoever I am with waits outside).

Have aread of teh free MS society guide and if you ahve the spare cash one of the ME chaity guides.. i use the same format for verbal answers i use in filling the form. But always the truth.

Identify problems.. its tricky because
state ability and frequency
what happens when it goes wrong,
how i have adapted to be able to manage
what symptoms occur as a result

I do make a point of explaining PEM as its a term i use often. I try to say symptom flare but when tired and loosing the plot the easier acronym slips in.

It sound slike you are sadly very poorly. That you are likely t be entitled to enhanced rates and that like with most of us you are really anxious about this.

I know it is not easy, but try to remember that sometimes these things work as they should. In all the people I help 4 friends with cfs/me and two family members with 'other stuff' they ahve all recieved the award we felt appropriate. It can go right.

Have you had any more thoughts about a home visit?

MECFS_2

Cyclamen thanks for your post it is extremely useful! I've read B and W guides and other guides but it's too much wordy information without sticking to the useful facts. I've found your advice more useful and to the point - maybe you should write your own guide, I'd buy it!

Yes I am constantly unwell and variability is just between awful and horrendous. I use some aids and appliances such as walking stick, wheelchair (try to use as little as possible to prevent deconditioning), perching stool in kitchen, shower seat etc. However I've found many aids and appliances just don't help. Although I find sitting difficult due to my back problem in general my range of movement is normal. However as I am in debilitating pain and have overwhelming fatigue then all movement is difficult whether using an aid/appliance or not.

I haven't thought about a home visit yet. My GP's letter is extremely strongly worded about my disabilities and how they effect my daily living and mobility. It has the tone of voice of 'why are you bothering this man again when you previously gave him an indefinite award and as I said last time nothing is going to change'.

IAmWales

Are you unable to go out alone?