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PIP bedbound how to answer as can't get to kitchen/ bathroom

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2 years 9 months ago #269665 by roseof sharon
Hello, hope you can help me. My OH is bedbound with severe ME and so can't get bathroom or kitchen. Activites of daily living as performed in bedroom. He can walk about 10 steps x 1 daily but can't repeat it. I am concerned that they will suggest we should use aids such as a wheels chair but I know that using aids such as a wheel chair to get him to the bathroom is a no no as by the time I've got him there he is too exhausted to be washed and this then exacerbates all other symptoms for weeks and impacts on his abilty to even sit up in bed/ feed himself / use commode etc . Would it be ok to write something like this on the form. Any other advice would be gratefully received

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2 years 9 months ago #269666 by LL26
Hi roseofsharon,
I sorry to hear that your husband is not so well.
I don't think a wheel chair would be an aid to facilitate cooking. It is a mobility aid only. You haven't described your home, is it a bungalow or house? Stairs would definitely preclude a wheelchair.
Have a look at the members guides if you haven't done so already.
All PIP tasks have to be done safely,to an acceptable standard and within a reasonable time and repeatedly across the whole day as required.
I am going to play Devil's Advocate for a moment.
If your hubby can get to the kitchen, why can't he peel a potato or mix gravy? Why can't he determine whether food is cooked? Surely he could use a timer? Does he do anything in the kitchen? Surely he could do part of the cooking and get help?
ME is a very difficult illness to convince DWP about. Think about the questions I have just posed.You will need to come up with some very strong reasons.
You describe your husband as bedbound, think about how you can prove this.
Medical evidence? If your doctor/nurse will confirm this then this would help. Does husband have wasted muscles? Can he manage to use the commode unaided, does he fall over before he gets there, maybe he soils himself because he can't manage to get there? What makes him exhausted if he does get up, is it psin, breathlessness fatigue etc?
If you can show that husband genuinely spends much of the day in bed, and can't cope with other daily living tasks it is much more likely you will convince DWP he can't get out of bed to cook.
Think about the whole picture portraying all his disability holistically, match up his outdoor mobility and indoor mobility, consider how he moves to the bathroom, how long all things take. (Reasonable time is no more than twice that of able bodied person.) Time things, how long to get out of bed, walk to bathroom, climb into bath etc. Think about what happens if eg GP or hospital appointment is needed - how do you get there, what are the problems etc.
Think about safety.
When did he last cook, why did he stop?
If there are better days these can be ignored, as long as they don't form the majority pattern.
Obviously repetition is crucial too. Whilst preparing food might only be done 2 or 3 times per day, being able to use the toilet could be several times more, and communication is likely to be across the entire waking day and possibly at night too. You need to be able to repeat PIP activities as many times as reasonably necessary.Make sure you explain why tasks can't be repeated.
If your husband needs help to feed himself, get into the bath, wash himself, get dressed, even if this is only into clean pyjamas etc these are all tasks that could give rise to PIP points.A commode can comprise points for aid/appliance.Certainly think how one activity impinges on the ability to do other activities as this is important. You may wish to write a disability diary for a week or two detailing the problems he has, what he can or can't do, help required etc, whether he has pain fatigue, breathlessness, as this could also indicate not acceptable standard.
I hope this helps.
Let us know how you get on.
LL26

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2 years 9 months ago #269686 by roseof sharon
Thank you lots to think about. It is really difficult to explain the nature of severe ME. We do have some evidence from GP notes of him being housebound for last 8 years. At that time we had a stairlift fitted but he hasn't been well enough to use it since his last relapse 3 years ago. It also says in GP notes that he is bedbound. He hasn't been to hospital appointments as going would make him even worse - instead with difficulty we have persauded GP to do advice and guidance and had community visits instead. He's had domicillary bloods, vaccinations at home and NHS dentist came out to him last year. He has not been to the bathroom for 3 years - he can't walk that far and even if i could get him there in a wheelchair he would be so exhausted that he couldn't stand or wash and the impact on him of going outside his energy envelope would be such that he wouldn't even be able to sit up in bed/ have increased pain/ great difficulty speaking etc for weeks or may be months. It's taken 3 years to get to the stage where now I bring flannels to bedroom and 2 or 3 days a week he will wash his hands and I wash the rest of him. How do you prove these things? He is so poorly yet it makes me feel like giving up on PIP but I won't. I have just spoken with a lovely lady at DWP who has done the appointee form with me over the phone so I'm hoping that might help. It looks like i'll have to think through and explain why he can't do things to be able to get some points. thank you for your help. I have looked at the advice on the site, thank you seems would almost be easier if he could do a little more ( sorry I know none of it is easy for anyone I just mean to explain) Thank you again for your help

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2 years 9 months ago #269688 by Gary
Hi roseof sharon

The advice I would give you is to keep a day diary of what you have to do for your husband, it does have a lot of weight at a tribunal, it also acts as an aid. I find most carers under play what support they give to their loved one.

You say that your husband does not use the stair lift, does he live upstairs or downstairs?

If he lives upstairs and there is a fire, how would he get down?

You say that professionals come to the home to carry out any treatment, use any appointment letter as proof.

Is your husband incontinent, if so then explain what you have to do.

Check out our guides, they are very well written and will give you pointers; www.benefitsandwork.co.uk/help-for-claimants/pip

If you have any further questions please come back to the forum.

Gary

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