New PIP rules - what to do?

Sam2022

So here we go again, new Government, different colour and regressive changes to punish the disabled!!

My situation and what to do for the best?
In June 2016 I received an ongoing award with light touch review after 10 years, so due in June 2026.  I was awarded Low care and standard mobility.  I thought about a MR at the time but 10 years certainty stopped me!  Better the devil you know, than risk losing it all.

In 2021 my health deteriorated overall and I was diagnosed with Ulcerative Colitis.  I again opted not to ask for a COC to my PIP.  Last year as the condition deteriorated I was seriously ill.  I now have regular biological medicine infusions and steroids to try and control the condition.  A colostomy is not an option due to my other health conditions as I only have a 5% chance of getting through the op.  The affect on my daily life has been immense due to continual side effects, this is unlikely to change.

I'm now 12 months away from my 10 year review and worried sick due to the new changes.  I got scored 4 x 2 points for care in 2016.  So will lose that come Nov 2026.  I also get the LCWRA in my UC  so that will also go.

If I wait for them to contact me, given the backlog of reviews will my existing award continue after the 10 year point until they reassess?

If my renewal due to backlogs physically takes place after Nov 26, which rules will apply?  The ones from the renewal date or the new Nov 2026 rules?

Alternatively should I bite the bullet now and ask for a COC bringing the Ulcerative Colitis into my claim, which would mean a full reassessment?

Any advice great fully received.

Spoonie_Turtle

I would say have a look at the descriptors and how it's assessed, see what you should score, and then you can make a decision based on facts rather than fear (to be blunt, sorry).  Because if you should score at least 4 on one of the daily living activities - and you are certain of it so you can fight for it if need be - then whenever you're reassessed you should be fine anyway.

You only need to worry about getting in before the new rules if you truly wouldn't score 4 on any activity.

Edit:

If I wait for them to contact me, given the backlog of reviews will my existing award continue after the 10 year point until they reassess?  Yes, they're routinely extending awards for a year because of the backlog

If my renewal due to backlogs physically takes place after Nov 26, which rules will apply?  The ones from the renewal date or the new Nov 2026 rules?  We don't know yet.  Prepare for the worst, hope for the best?

Alternatively should I bite the bullet now and ask for a COC bringing the Ulcerative Colitis into my claim, which would mean a full reassessment?  You could, it'll still take them a while to get to you but perhaps not as long as if you wait for them to review you.  As above, if the assessment were to take place after the new rules are in, we don't know for certain which would apply.

HillStreetBlues

Sam2022 said:

So here we go again, new Government, different colour and regressive changes to punish the disabled!!

My situation and what to do for the best?
In June 2016 I received an ongoing award with light touch review after 10 years, so due in June 2026.  I was awarded Low care and standard mobility.  I thought about a MR at the time but 10 years certainty stopped me!  Better the devil you know, than risk losing it all.

In 2021 my health deteriorated overall and I was diagnosed with Ulcerative Colitis.  I again opted not to ask for a COC to my PIP.  Last year as the condition deteriorated I was seriously ill.  I now have regular biological medicine infusions and steroids to try and control the condition.  A colostomy is not an option due to my other health conditions as I only have a 5% chance of getting through the op.  The affect on my daily life has been immense due to continual side effects, this is unlikely to change.

I'm now 12 months away from my 10 year review and worried sick due to the new changes.  I got scored 4 x 2 points for care in 2016.  So will lose that come Nov 2026.  I also get the LCWRA in my UC  so that will also go.

If I wait for them to contact me, given the backlog of reviews will my existing award continue after the 10 year point until they reassess?

If my renewal due to backlogs physically takes place after Nov 26, which rules will apply?  The ones from the renewal date or the new Nov 2026 rules?

Alternatively should I bite the bullet now and ask for a COC bringing the Ulcerative Colitis into my claim, which would mean a full reassessment?

Any advice great fully received.

It's an important question and not seen the answer.
My PIP (standard care) was until 2030 (10  year), and was just going to let it run even though I feel it should be enhanced and have a 4 pointer (max is 3 atm). I decided to request a reassessment because of the proposed new rules I am willing to go to a tribunal if needed.

Muttleythefrog

Totally understand your issue... as above... we are not sure which rules would apply at the time you're assessed due to the timing of it likely to run from before the change to after the change. I would therefore at the moment focus on how you may improve the award.

Given some recent timeline postings it is possible you'll be contacted for reassessment paperwork completion in around 9 months before expiry of award... others may have better up to date info.. but that obviously may have impact on any decision to ask to look at worsened disablements due to changed health or simply use reassessment to make case for worsening condition/more disabling descriptors.

Hard to precisely advise sadly... but on the face of it I'd be inclined to report change and try to get improved award. Two reasons - one to try to get assessed before change in case you fail to get a 4 point scoring DL descriptor or better (you'll probably then be years from a reassessment to lose award)... second reason to pre-empt the change ahead and overcome it. Look on the Gastrointestinal Disease website or chats to see if any good tailored advice... could prove useful as recently looking at data suggests UC and Crohn's are lower than average in success for PIP claims but obviously your situation is more complex and clearly you have significant health issues.

(Worth noting your likely path ahead and what HSB says about their own situation are precisely what I've warned my MP will happen... as it happens every time we get cuts... people will seek better awards to protect themselves or levels of income and predicted savings will dissipate. I stated to them many are satisfied with lower awards than they should get.. and many will be triggered into action).

Sam2022

Thanks for all the info guys, it is very much appreciated.  I've been trying to look at things from a level headed place, which isnt easy to do sometimes.
I have however worked out we will lose around £153 a week under the changes, how they expect people to just deal with that I do not know!
Today I managed the following things, a shower, a trip to the supermarket where I sat in the car and waited and I helped make up my medications for the next 2 weeks.  I'm absolutely done in, yet the Govt feels I should go and get a job.  I should add today was a better day than a bad one.

I'm not greedy I could have gone for more PIP anytime in the last 10 years but chose to accept a lower amount with certainty.  No way can we absorb a £153 a week drop, like 99% of claimants we just want to be treated fairly.

The thought of reassessment is scary, I have done 2 successful tribunals in the old DLA days.  I was mentally in a better place all those years ago, I'm not sure I could do it all for a 3rd time right now!

Even more worrying is what further cutbacks this Govt will go for on benefits, as the books are not going to balance by October and the budget.

HillStreetBlues

Sam2022 said:

Thanks for all the info guys, it is very much appreciated.  I've been trying to look at things from a level headed place, which isnt easy to do sometimes.
I have however worked out we will lose around £153 a week under the changes, how they expect people to just deal with that I do not know!
Today I managed the following things, a shower, a trip to the supermarket where I sat in the car and waited and I helped make up my medications for the next 2 weeks.  I'm absolutely done in, yet the Govt feels I should go and get a job.  I should add today was a better day than a bad one.

I'm not greedy I could have gone for more PIP anytime in the last 10 years but chose to accept a lower amount with certainty.  No way can we absorb a £153 a week drop, like 99% of claimants we just want to be treated fairly.

The thought of reassessment is scary, I have done 2 successful tribunals in the old DLA days.  I was mentally in a better place all those years ago, I'm not sure I could do it all for a 3rd time right now!

Even more worrying is what further cutbacks this Govt will go for on benefits, as the books are not going to balance by October and the budget.

I don't disagree, I better not get into anything too political (not allowed on this forum) but it did influence my decision  the thought of more cuts / possible changes to the wording  of PIP descriptors. Like most people not sure what will happen next, but I tried to look at the big picture. I just felt it was right for me.

gbhxu

I think it's best to leave things as they are until re-assessment comes around.

I've worked out I could be about £9250 worse off if the 4 points for one question comes in

SURVIVEDCOVID

Sam2022 said:

So here we go again, new Government, different colour and regressive changes to punish the disabled!!

My situation and what to do for the best?
In June 2016 I received an ongoing award with light touch review after 10 years, so due in June 2026.  I was awarded Low care and standard mobility.  I thought about a MR at the time but 10 years certainty stopped me!  Better the devil you know, than risk losing it all.

In 2021 my health deteriorated overall and I was diagnosed with Ulcerative Colitis.  I again opted not to ask for a COC to my PIP.  Last year as the condition deteriorated I was seriously ill.  I now have regular biological medicine infusions and steroids to try and control the condition.  A colostomy is not an option due to my other health conditions as I only have a 5% chance of getting through the op.  The affect on my daily life has been immense due to continual side effects, this is unlikely to change.

I'm now 12 months away from my 10 year review and worried sick due to the new changes.  I got scored 4 x 2 points for care in 2016.  So will lose that come Nov 2026.  I also get the LCWRA in my UC  so that will also go.

If I wait for them to contact me, given the backlog of reviews will my existing award continue after the 10 year point until they reassess?

If my renewal due to backlogs physically takes place after Nov 26, which rules will apply?  The ones from the renewal date or the new Nov 2026 rules?

Alternatively should I bite the bullet now and ask for a COC bringing the Ulcerative Colitis into my claim, which would mean a full reassessment?

Any advice great fully received.

Given some largely ill informed comments made recently by some other very long standing forum members regarding a similar topic (well at least re PIP) could I politely recommend that you contact some people who can definitely give you some pragmatic and balanced guidance. Namely your local council's welfare rights unit. As far as I am aware virtually all Council's have such units. Many friends speak highly of them and find their guidance to be excellent and truly independent. They definitely know about 'light touch' reviews which I understand are unlikely to be changed as part of the proposed current welfare reforms.

Some feedback on this site can on occasions leave you even more confused and can be misleading or inaccurate.

Some members may abuse me for saying the above, but at least when you speak to a welfare rights officer at least you will know who you are speaking with as distinct to dealing with a potential keyboard warrior or troll.

Best of luck. 

Sam2022

I just realised last night I miscalculated when working out how much we would lose   It just gets worse!!

I failed to realise that my partner would lose CA because I won't get DL component of PIP.  So with those two plus the additional UC we will lose £252 per week.

How can any Govt of whatever colour believe that is a fair way to treat disabled people?  Do they not understand the effect of ripping that type of support away will leave hundreds of thousands of people in a financial mess?

I'm going to have to work with the descriptors to try and go for the 4 point score somewhere.  My conditions are a lot worse now than in 2016, so there is nothing to lose.

I've written down the options of each option going forward and am looking at the pro's and cons of each.  I'm leaning towards waiting until I am called next year.  If there are long delays and my current award is bumped on then that could give me another 12 to 18 months PIP plus the other elements.  That at £252 a week is a lot of money, especially if it went on for 18 months.

12 months down the line a lot I hope will have changed.  Surely to God these changes will be significantly watered down, or scrapped?  I can already see legal action being taken.

If it was all about giving disabled people the option to try and work, then all your benefits should remain in place until the Govt can provide the suitable jobs the disabled people can do!!

TELLIT01

I can't answer the questions the OP asked, but do foresee utter chaos with people appealing the decisions to stop their PIP, and/or people making new claims after being disallowed.  At the same time as a major change to entitlement rules the Government is looking to cut thousands of Civil Service jobs!

I would add that I do see the need for closer scrutiny of claims as there are undoubtedly many fraudulent claims made.  Not for one moment am I suggesting the OP or their partner are amongst them.  The ex-partner of somebody I know has claimed to have ME, fibromyalgia and several other conditions, all of which are very difficult to disprove.  She clearly has a very unusual strain of these conditions as they seem to ease at weekends when she regularly goes out 'clubbing' or whatever the correct term is these days.  I'm afraid it's people like her who cause others to question the system.

Muttleythefrog

Sam2022 said:

I just realised last night I miscalculated when working out how much we would lose   It just gets worse!!

I failed to realise that my partner would lose CA because I won't get DL component of PIP.  So with those two plus the additional UC we will lose £252 per week.

How can any Govt of whatever colour believe that is a fair way to treat disabled people?  Do they not understand the effect of ripping that type of support away will leave hundreds of thousands of people in a financial mess?

I'm going to have to work with the descriptors to try and go for the 4 point score somewhere.  My conditions are a lot worse now than in 2016, so there is nothing to lose.

I've written down the options of each option going forward and am looking at the pro's and cons of each.  I'm leaning towards waiting until I am called next year.  If there are long delays and my current award is bumped on then that could give me another 12 to 18 months PIP plus the other elements.  That at £252 a week is a lot of money, especially if it went on for 18 months.

12 months down the line a lot I hope will have changed.  Surely to God these changes will be significantly watered down, or scrapped?  I can already see legal action being taken.

If it was all about giving disabled people the option to try and work, then all your benefits should remain in place until the Govt can provide the suitable jobs the disabled people can do!!

Yes... as I've been raising (including with MP).... the Green paper (and ministers who have spoken since) essentially ignored the issue of carers who could lose their entire income indirectly as a result of proposed changes to PIP DL. I should have raised the possibility here.

Obviously we cannot discuss the politics of the changes.. or we try to avoid...lol. I would say yes parliamentary processes and politics may play out to see the changes changed, watered down, amended, added to etc. I suspect.. and would work with the idea... that the 4 points minimum PIP DL descriptor issue will be implemented.

So focussing on your dilemma in terms of next action... I am inclined to remain of suggestion of reporting deteriorated health... even more so due to the additional potential loss down the line. Looking even further down the line possibly we can ignore as either option of waiting for reassessment or reporting changed health would likely take you to same place in regards to the elimination of WCA and reliance on PIP (DL) award to primarily determine health element eligibility... and do so before those changes. My concern is if you wait for reassessment and argue much worse health they may be curious as to why you never reported it (raising perhaps slightly the risk you will be considered unreliable for evidence which would be less likely if reporting change and documenting it with medically supportive details such as regarding treatment).

So I would be inclined to bite the bullet and aim for a DL enhanced award (with at least one 4 point scoring descriptor) plus mobility as per what you think suitable. You've had at least one commenter of opposing view... and I can certainly appreciate there are some merits... but on balance.. from the information available... risks with either option I see the lower risks with triggering a reassessment of entitlement... my view would shift a bit if we could be sure which rules (old or proposed) you would be assessed under and unfortunately that information is not available... if you were going to be naturally re-assessed under old rules as award runs out then I would not have a clear view one way or other particularly if you were satisfied to retain a standard DL rate. Get a feel for views perhaps... and like you're doing weigh things up.