Hi, my names Phil I’m a Carer & 1st time on here so hello…
Extremely quiet on this forum as I type.
For every ten or so members reading this post , only one will even reply !
Anything of particular we can help / assist with ?
The forum is yours to explore.
Hello Phil and welcome to the forum
Would you like to tell us a little about yourself and the person you care for ?
We’re a very friendly group of Carers and ex Carers and whilst we don’t have all the answers sometimes we know where to look !
Welcome to the forum.
If you can tell us a bit more about your caring situation, and what you struggle with most, there is bound to be someone else who has struggled with the same thing, and may be able to pass on information that can help.
Hi everyone Phil here I am my wife’s Carer ( registered with carers support wiltshire) my wife has suffered with depression/ anxiety /ptsd for all her adult life, then 3 yrs ago she was diagnosed with Fibromyalgia. We are both in are 50’s & have been married for 22yrs. We gone from very active walkers/ ramblers + a 31 mile charity walk 4yrs ago, to most days my wife is house bound with chronic pain. She now walks with a stick & has a mobility scooter so we can get out more. So yeah!! Life can be hard???
Hi Phil and welcome from a fellow newbie. I became my wife’s carer a few years ago when she became ill with fibromyalgia after losing both her parents within a few years of each other. I can’t offer you many words of wisdom, as FM seems to be different for everybody, but over the years we have both learned to deal with it by various ‘coping’ and ‘avoidance’ strategies. It doesn’t actually seem to get ‘better’ with time, but learning to live with it makes it more bearable.
Be aware, though, that if your wife receives PIP (as mine does) - then the DWP assessors tend to view these strategies as if the condition is ‘getting better’ - simply because you have both learned how to deal with FM over time. Their reasoning is that they do not look at the illness itself - but upon the way that it ‘impacts’ your daily lives. So if you are learning to cope with it, then they will take that to indicate that the ‘impact’ is reduced over time. So you have to be careful how you word your PIP re-applications as and when they come along.
For example, my wife can now take herself into town and do some shopping once a week - which she couldn’t do at all originally. But this is not an ‘improvement’ in the ‘impact’ - even though it may appear to be. We simply realised that as long as she ‘paces’ herself and plans ahead, she is able to spend a few hours in town once a week. This actually becomes painful and tiring for her eventually, and I always pick her up in the car when she is ready - because it leaves her in pain and hardly able to walk eventually - and she will be unable to walk for some time afterwards. So it is not an improvement in the ‘impact’ - it is simply ‘re-arranging’ the ‘impact’ to allow a much-needed weekly morale-boosting visit to the shops, but at the cost of pain and higher disability for a day or two afterwards. The ‘impact’ is not lessened - it is simply ‘re-distributed’ by both of you working together with ‘strategies.’
Another argument which I am currently looking into with the DWP is based on the common FM symptom which often renders sufferers unable to function for 2 or more hours each and every morning. This was ignored in my wife’s recent PIP re-application, despite us pointing it out clearly during the Mandatory Reconsideration (MR) and subsequent appeal process. I am still awaiting the DWP’s clear reasons why they studiously ignored this. There is a guideline hidden away in the DWP’s own PIP Assessment Guide which reads: “If a claimant is unable to complete an activity or needs support to do so at a point in the day when you would reasonably expect them to complete it, then the need should be treated as existing for the whole of the day, even if it does not exist at other points in the day.”
Think about it - any fully-able person is reasonably expected to be able to get out of bed, make it to the bathroom for morning ablutions, go downstairs and prepare a simple family breakfast. So being unable to do so for 2 or more hours each morning means that the claimant should be treated as being unable to do so for the whole of the day. This would make a big difference to the points scored for most of the descriptors - and is perhaps the reason why it has been studiously ignored. I haven’t checked if other PIP claimants are aware of this guideline, but may start a thread here if/when I get a proper reply from the DWP.
This is really useful information for anyone affected. Thanks for sharing…
I’m glad my rambling post made sense, Bowlingbun ! When I have found my feet here, I’ll maybe start a thread about that - as it may be worth further discussion. In the absence of any response from the DWP so far - despite a written reminder followed by a phoned reminder (and a promise to reply) - I have now just sent a ‘Formal Complaint’ letter by ‘Signed For’ post in the hope that it gets a bit more attention.
Yes we know the trappings of pip well. My wife does get pip and we’re actually awaiting the decision on her renewal right now. My wife did a lot of research when she applied the 1st time and has printed off the actual government guidelines for dwp on awarding pip. She found out that for a descriptor to be valid it has to be proved that you can carry out the activity at least 50% of the time and measured over a 12 month period. Also makes it clear you have to be able carry out the activity repeatedly when needed, safely, in a reasonable time and to an acceptable standard. They must also take into account the physical and psychological affect on you that carrying the activity does. Ie; if you’re in pain or pain and fatigue after. Unfortunately dwp do their best to ignore these rules unless you bring it to their attention! Their 2nd speciality is to tell out and out lies!! Pure evil!
For more on PIP as background , the main PIP thread :
There will be no surprise in that it does not make good reading.