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Stage 4 bowel cancer

Chris82

Personal Independence Payment (PIP) and stage 4 patients

There have been several threads about PIP over the past few months. While other patients can and should claim PIP if they meet the criteria, this benefit is particularly relevant to stage 4 patients and I thought it might be useful to gather some information here with us in mind. Please note any opinions here are mine, not those of the charity.

Things you should know:

* Personal Independence Payment is a tax-free and non-means tested benefit designed to help with the extra costs of having a disability or health condition. However, it is a cash payment and you don’t need to provide evidence of specific expenditure.

* There are ‘daily living’ and ‘mobility’ components of PIP, with the maximum award being £139.75 per week.

From a stage 4 cancer perspective, you should know:

There are two routes to claiming PIP, with different criteria and assessment processes:

Under the ‘normal rules’:

* You must have experienced difficulties for at least three months and expect them to continue for at least nine months. This rules out many patients where treatment and side effects are (thankfully) limited to a shorter period.
* The difficulties you have will be assessed according to a form you complete, probably followed by an assessment over the phone or face-to-face. You’ll be awarded an amount based on the points you score.

Under the ‘special rules’ for 'terminally ill' people:

* The process is faster. You probably won’t have an assessment or need to fill out a long form, but a medical professional (GP, nurse, or consultant) will need to sign form DS1500. You will usually be awarded the highest rate of PIP.

“But I’m not terminally ill!” most people will say. The DWP state that for this route your death should be ‘reasonably expected’ within six months. Who on earth ‘expects’ to die within the next six months? Not most of us.

I personally would encourage anyone who has advanced or incurable cancer to consider whether they should apply under these rules, and try to put the potentially upsetting language to one side. You will find that ‘reasonably expected’ is open to a lot of interpretation, and many medical professionals would support your claim given you will be expected to live with the effects of cancer on an ongoing basis.

If you do still claim under the normal rules, I would still advise you to ask for help with this process. A common key mistake in filling out the paperwork is for cancer patients to ‘under report’ their side effects. You should make clear on your form how you are affected on your worst days. If in doubt, you will find that organisations such as Macmillan or local advice centres may be able to help you fill out the assessment form.

For more information (including how to claim) the pages I’ve found most useful for full information are:

The official gov.uk pages, at www.gov.uk/pip/overview (where any changes would be announced)

Macmillan, as it focuses on cancer, at www.macmillan.org.uk/...ersonal-independence-payment.html

Marie Curie, who talk about the ‘special rules’ at www.mariecurie.org.uk/...ess/personal-independence-payment

If in doubt, do feel free to ask questions on here and we can help each other navigate the process.

Chris

Skye

Thank you @Barbara I will try again. The advisor was adamant about this and I did have to indicate household income on the forms. Nothing is straightforward is it!

Barbara

Think you might have been directed to wrong payment then @Skye There are means tested and non means tested ones. I did not have to declare income but doctors had to say I was expected to live less than 6 months. Happily I have outlived that prognosis and am still well. Though unhappily also still terminal of course! Macmillan adviser did it over phone for me and I was even given mobility allowanc although I didn't claim it. If you get it you should also get a blue badge and be able to apply for things like disabled railcard, which has been a great benefit to me as I travel to London a lot to see my daughters and granddaughter.

Skye

Thank you again @Barbara, the other bit I 'failed' on was that I was too well despite having a 18 month prognosis at the time. Maybe i need to get under 6 months? I will try to see another advisor this time as I feel a bit peeved about it all now as my wife has paid for 100% of of all my support.

Barbara

I think you do have to be under 6 months, which is obviously a lot to take on board. I think the form is DS1500 from memory of other posts. Perhaps you could search that on the forum? @ Skye.

Skye

Feel a difficult conversation with my Onc coming on @Barbara but feel I definitely have more than 6 months so will probably fail again I guess.

Ally13

Hi @Skye and @Barbara. I got higher rate PIP, and this was definitely not means tested, and I was stage 3 on a curative pathway. Awarded till May 2018 last July (2016), but I have just completed a review form, and I may or may not be re-awarded. All forms completed by Maggie's centre.
Good luck.

Skye

Hi @Ally13 thank you...its all so confusing and i don't understand why it's so difficult. I will try again but I don't hold out much hope.

Polly 1

Hi @Skye PIP is definitely not means tested. We were not asked about our income/capital at all.

Hubby got standard daily living for 3 years to be reviewed next year after 2 years. Unless you are on DS1500 form it does depend on how your illness/treatments are affecting your daily life.

You should try again I think and make sure it is PIP forms they are filling in. Depending on situation (working/pension) your wife may be able to claim carers allowance once you get a PIP award.

All the best :x:

Skye

Hi @Polly 1 that is really helpful thank you so much

Polly 1

Hi @Skye why don't you phone and get the PIP forms yourself? If you do get it awarded in the end your claim is backdated to when you rang them.

We originally got Macmillan to assist us with the form and they were useless so I took it back off them and filled it in ourselves. The Macmillan lady told us not to bother applying as we wouldnt get it but we did it anyway. We had a face to face assessment from Capita but eventually it came through OK.

Just reading back through your posts I see your wife has a high income so in that case don't think she could get carers allowance.

Best of luck :x:

Skye

Thanks again @Polly 1 that sounds like a great idea. The last time I was with the Macmillan advisor for a couple of hours and did all forms only to be told at the end I am not ill enough(as if stage 4 cancer with gruelling chemo is not bad enough) and my wife earns too much. Will try again though many thanks

Beck R

@Skye Is there a Maggies centre near you? They were really helpful, although so we're Macmillan as they passed forms to them and then the specialist oncology nurse filled in the ds1500. I got a copy of the form and it didn't actually say six months left, just that I had stage 4 incurable cancer. It may be there was a covering letter though that I didn't see? I then had to phone the pip number and had a telephone conversation about how far I could walk etc etc Wasn't sure that I would get the full mobility part as I can manage more than 50m and advisors says it can vary who gets full mobility amount but I did get it all.
It''s definitely not means tested so they must have given you the wrong advice/forms.

Skye

Thank you @Beck R thats great advice. I am going to try again and also ask about the ds1500.

Ally13

@Skye, I phoned and answered some basic questions about bank account details, address etc., then forms sent to me. I handed form to welfare adviser at Maggie's. She asked me questions on form and completed it and sent it back. I was told (for me at stage 3), that usually gp's input has great influence. I didn't have face to face or telephone interview from dwp. As I got the higher rate for both components, and I'm stage 3, it can't be based on '6 months left.' Maybe it's a lottery and just depends on the decision maker at dwp. I was actually surprised to get it.
It was a help as I didn't get ESA as this is means tested. Maggie's will help you with the process. They are wonderful. Best wishes.

Ally13

Should have said, 'I phoned dwp.....'

Skye

Thank you @Ally13 its so helpful

Chris82

Hope you get this sorted soon @Skye. Get in touch if I can be of any help.

Skye

Thank you very much @Chris82 I will contact the DWP and take it from there

Regalo

@Chris82 I just wanted to thank you for flagging up PIP. I had absolutely no idea about it, let alone that I would be eligible. I have been awarded the full amount continuing until 2020. So thank you so much for your time and effort in posting your original message. :x::x::x:

Chris82

Glad I could help @Regalo and pleased to hear you're getting the support you're entitled to!