Borderline CFS and applying for PIP

[zeetha]

Afternoon all,

We're now coming up to 2.5 years since my spouse got ill, and was eventually diagnosed with borderline CFS/ME.

We've talked about applying for PIP (and maybe other benefits/schemes) but I'm concerned about the mental and physical toll the application process will have on my spouse and don't want to do it if its going to make her worse for no or not much benefit.

A bit of background - as long as I do most of the housework and cooking she is pretty stable, but we still have to plan all activities to avoid a crash and she is only able to do half the social/work things she used to do. Both the local NHS and a private specialist that she is seeing for treatments (Dr Bansal) have said that she is borderline CFS/ME, but she is not under a CFS specialist or service because she is borderline.

I would try and do as much of the form filling/process as I could but just wondered if anyone else had any thoughts on the likelihood that we would even get PIP, and if so whether the (from what I've read) long and arduous process was worth it?

Also, if anyone else did the application on someone elses behalf, how much of the application were you able to do?

Thanks in advance everyone!

Caroline

 

[keepswimming]

Hi, myself and my husband both recieve PIP, mine is for ME and his is for a separate disability.

Firstly if you decide to apply I would strongly advise getting a years subscription from the Benefits & Work website. It's £20 and they have guides you can download to help you fill out the forms and do the interview. Understanding the meaning behind the questions, and knowing how to phrase your answers makes a big difference to having a successful claim. Their guides helped us a lot.

Their PIP self test is open to non members and should give you an idea if you are likely to be eligible for PIP. If you are having to do the housework/cooking etc then your spouse may be able to get the care element of PIP, or problems walking long distances might make her eligible for the mobility element. A key thing to know is that you have to be able to do something reliably - so if you can do something once but it makes you worse and/or you couldn't do it again, that counts as not being able to do it.

Regarding the claim, you could write out the answers for the form. Your spouse would need to do the interview part of the process, although you could also be present. The interview lasts around an hour. Mine was in the middle of the pandemic so it was over the telephone, from what I've read online telephone appointments are still common. You could request a telephone appointment or home visit on the form if that would help with energy.

I hope that helps

 

[zeetha]

Hi @keepswimming thanks for your very helpful reply!

The being able to do something reliably is one of the areas we are not sure about. I do all the cooking and we have a cleaner now to help me with the housework. My other half could do maybe one easy meal a week, or a bit of housework one day a week, but then wouldn't be able to do the few hours of work that she does that day.

Do we base our answers on the fact that she wouldn't be able to do the cooking every day, or is the fact that we're a couple come into it and I would be expected to be doing some of it?

Hope that makes some sense!

 

[keepswimming]

Hi @keepswimming thanks for your very helpful reply!

The being able to do something reliably is one of the areas we are not sure about. I do all the cooking and we have a cleaner now to help me with the housework. My other half could do maybe one easy meal a week, or a bit of housework one day a week, but then wouldn't be able to do the few hours of work that she does that day.

Do we base our answers on the fact that she wouldn't be able to do the cooking every day, or is the fact that we're a couple come into it and I would be expected to be doing some of it?

Hope that makes some sense!

It should be based entirely on what she can manage. If that's her situation I would tick to say she is unable to do those things, and then explain the situation in detail in the comments box. Only being able to do it once a week, and making herself sick in the process, means she is unable to do it reliably.

 

[Treeman]

You'll need a letter of diagnosis, without one you won't get far.

Fill the form in from a worse case scenario and repeat that during the interview. If your spouse can't do things repeatedly (eg walk 50 Meters), safely and within a timely manner, then it's a no.

The DWP turn almost everyone down. I have a friend who has had a leg amputated and he got a 0 rating! Won on appeal for full pip. That's what we're up against.

The government see us as lazy scrounges unwilling to work and DWP workers have a quarter to refuse.

Expect the worse and don't let it get you down. My partner took theirs to the appeal by an independent judge and during the process he told the DWP worker off twice for their attitude.

It's not a quick process, but be patient. Good luck.

 

[zeetha]

Thank you both again - very helpful! So hard to believe that DWP would turn your friend down @Treeman but thats the system and I'm glad to hear he won on appeal.

 

[Emmarose47]

Hi there
I got awarded Pip 4yrs ago I've had one review since where I was awarded more and have been receiving enhanced rate for both mobility and daily living.
Agree with the mention of the benefits and work site it is so informative and helpful. It's run by a lawyer and ex gov worker they have so much knowledge and experinece. There is a guide to applying for pip and a forum where questions can be asked.

As people have mentioned it's about being able to attend to daily living tasks reliably, timely and safely.if a person can for over 50% of the time then it wouldn't be awarded points.
Give the worse case scenario for each task.
There is an assessment criteria with the points system Google to find it.

It's said hardly anyone gets awarded I'm not sure if that's true. I think we hear about the non awards so frequently that people getting awarded isn't getting the air play.
That being said its not an easy benefit to get but it's worth a shot I say. There are charities and citizens advice can help with form filling.

I'm. Due reassessment soon and will be asking for an extension to complete the forms and also I'll need a telephone assessment.

In my experience it's been in my favour to submit as much evidence as possible.
If your partner isn't under any services it will make it more tricky as there isn't any evidence from professionals. I have hospital service, Gp, mental health team and home helps.
The private specialist I'd say be worth speaking to them saying applying for Pip and could they write a letter. I'd also ask them what they mean by 'borderline'?
From what you've described doesn't sound borderline to me..
Has partner had symptoms for longer than 6 mths?
Look up the criteria for m. E cfs diagnosis. If your partner wants to challenge the doc that is an option.

Haul in anyone who helps or witnesses and get them to write a letter. You yourself will be classed as a carer so u can say the impact on you.

I suggest looking at a copy of the pip form and the scoring criteria. You'll then gain a better understanding of what your dealing with.

 

[godlovesatrier]

Really interesting, I see Dr Bansal too but he's neversaid I am borderline. Guess I must tick a lot of boxes, didn't really think about it because I am mild. Just out of interest did he say that due to a lack of PEM, ability to sleep really well or no brainfog/neurocognitive dysfunction?

RE PIP you should still be able to go ahead, and then get the tribunal afterwards. I am seriously worried about catching long covid and having a major ME flare which stops me working, it's my primary concern these days. Last time I got covid it didn't even break through the vaccine and it still took 3 months to recover.

The advise I also always had was make sure you do quite a bit but not too much the day before. Sadly with this illness aggressive pacing is your best friend, but with PIP that could go against you. I Assume things are still really really bad because of the government idiots so airing on side of caution may be the best thing to do until the government changes hopefully soon!!

Good luck and best wishes with the process.

 

[Emmarose47]

The pip assessment system is flawed according to benefits and work.. Often when it gets to appeal stage the rightful assessment takes place

 

[zeetha]

Thank you again for all the suggestions and support!

Very useful advice about giving the worse case scenario. We've been thinking more about what she *could* do my help without thinking about how she would be if I wasn't here or able to do as much which is what the PIP should assess for.

Whilst discharged from the NHS CFS service as she is borderline, shes still under Dr Bansal and he has said he will write a letter in support as will a therapist she spoke to.

The reason she is borderline is that her main symptom is fatigue, with brain fog and PEM only if she does too much which we are learning how to prevent as much as possible. She doesn't have trouble sleeping, or have pain etc so per the scoring of both Dr Bansal and the CFS service that makes her borderline for a CFS diagnosis. For her mentally its better that she doesn't have the diagnosis, but it probably works against her regarding PIP.

 

[godlovesatrier]

Interesting, so I have the sleep issues, they were always mild but they have now got worse and I go through periods of insomnia. But I think the insomnia can be treated with antibiotics in my case as it's due to got dysbiosis on the whole. I drank some kefir last night (not much) and had severe insomnia and anxiety all night and it's not completely gone today. Healed my intestinal issues tho which was something.

Anyway thanks for replying with the info. I also have never had any pain, but when crashing it can feel like my skin is burnt all over my body, I also get painfully swollen glands sometimes, so it's there but not sure it's the same thing.

Dr Bansal is also convinced I have MCAS and an entereovirus. Tbh i think he's right abouth both things, MCAS is a recent issue for me, I started over reacting to things gradually over the last 8 years, it seems to be much worse with each passing year.

Good luck.

 

[Emmarose47]

I don't have sleep issues..
Does your partner get any discomfort in their body? Aching throbbing anything?
Mine started mild just a sort of numb weird sensation in my legs and I got. Diagnosed

 

[zeetha]

Nope no discomfort or pain at all, even when having a crash. It really is just the fatigue, and then brain fog when she gets extra tired/overdoes it.

Sorry to hear about your MCAS and insomnia etc @godlovesatrier

Rang PIP claim line this afternoon to start the process. I'm glad I was able to do it mostly on her behalf as even that alone would've made her more tired as they kept asking for the same information like surname and address (presumably on different screens of the process). My heart goes out to anyone who is not well trying to do this process alone.

 

[liza58]

The ME Association also have a guide on filling out a PiP form, explaining the score for each answer. It's £1 to download it. https://meassociation.org.uk/2022/07/new-personal-independence-payment-pip-application-guide/

 

[zeetha]

Thanks @liza58 - we've got that guide

The form finally arrived this afternoon so we can start filling it in at last

 

[Emmarose47]

Best wishes with it.. Shout if u get stuck.. I've done 3 rounds of it now... Also work and benefits forum v good

 

[zeetha]

As expected the wheels of bureaucracy run slowly, and having submitted the form in December we have a telephone consultation with an independent assessment service this coming Friday. My wife is a bit nervous about it but I guess all we can do is by honest about how she is and how we have adjusted our lives to deal with it! Anyone got any advice about a telephone assessment?

Keeping our fingers and everything else crossed that this is all worth it!

 

[Treeman]

When describing the limitations just highlight the bad days and experiences. Good luck.

 

[keepswimming]

As expected the wheels of bureaucracy run slowly, and having submitted the form in December we have a telephone consultation with an independent assessment service this coming Friday. My wife is a bit nervous about it but I guess all we can do is by honest about how she is and how we have adjusted our lives to deal with it! Anyone got any advice about a telephone assessment?

Keeping our fingers and everything else crossed that this is all worth it!

If you have the guide from benefits and work it has a list of possible questions they might ask you.

Also I remember one good piece of advice, if you are telling them you can do something, always remember to say “but"! In other words, don't just say yes even if it's something you can do - also explain the consequences of doing that activity.

I hope it goes well for you.

 

[Emmarose47]

Yep same I submitted Nov but 6 mths before it's due. Glad to get it out the way.
Benefits and work is v good as Tree man mentions.
Suggestions I've had call them and ask for the phone assessment to be recorded they then sent me a cd. The rational is that the person has a copy if needed in the future.
I ask for breaks whilst having phone assessments so 5 min rests etc.
I also used percentages to describe activities eg '70 % of the time I use a perching stool to heat my food up..

Best wishes with it.. Have they been awarded before?